ORIEN ROSE UPDATES

6-24-08 - morning

2008-06-24T08:47:00.000-07:00

Orien Rose is in. She went in this morning at about 8am. We are looking at a minimum of 4 hours for the procedure (that does not include prep and post time).

Sitting in the waiting room, watching the newer parents turn their head every time a doctor walks in, we remember that feeling. Because we are "veterans" doesn't make this any less scary, we are only more prepared to occupy our time.

Orien plays on his phone, takes a number of walks...goes for fresh air. I have written, emailed, gotten frustrated at all the places the hospital network will not allow me to go (and thanks mom for your WWAN...which I am borrowing to get into the blog site).

We are almost 4 hours in so far...

Thank you all for the calls, emails, texts and support sent our way already today. Once Orien Rose is out and we are settled (we are told we will initially be in PICU), we will post again.

Blessings

6-23-08

2008-06-23T09:58:00.001-07:00

6-23-08

In ten minutes we will leave to go to a pre-op appointment. I feel the need to be connected, through words, feelings, others in the land of the web. Orien and I tried for a moment of solace this morning and snuck out to breakfast while Orien Rose still slept (her family there to watch her if she woke before we returned).
Instead, the morning brought frantic phone calls, confusion, antagonistic anger and blame (not from us, but office staff who were obviously having a bad day). Boy, are Orien and I a good team. Like pro’s, we fielded the phone calls to the right people (he does medical, I do billing) and have prepared to get done a few final things before we embark tomorrow.
There was a small blow-up, quickly resolved with a few key words, though I have to say I anticipated another as the tension began to grow while more phone calls came in. In the end, we were able to keep it together and get through it. A shower and some packing aiding our bodies in staying connected. We are good at what we do, though…we can see our blessings.
This morning, before I left, I stared at Orien Rose asleep in bed. I sat down and ran my hand across her cheek. I looked at her profile, how perfect the face of my child, so serene. The unscarred cheek was presented as she laid on her stomach, her right side to me, her breath easing me into her rhythm. I stroked her hair, said a few prayers and hurt with love.

6-22-08

2008-06-22T15:18:00.001-07:00

6-22-08

We are nearing the next, and hopefully final, surgery for Orien Rose. A lot of you have followed the story since last year, and we are incredibly appreciative. (If you are just joining us, please go back to May 2007 and read the first few posts for the complete info about the accident.) We have been taken care of, supported, gifted with blessings of energy and miracles. We have had energy sent our way from people all over the world. We are still hearing stories like the one told to us at my sister’s wedding in December. A family friend’s mother lives in Ireland. When she got the news, she gathered the people in the Pub (Church is open Sundays, the Pub is open every day) and they all prayed for us. We got emails from people from all over the US and from Canada, Africa, India, Australia…
Orien Rose is amazing, yes…and we (Orien and I) can’t discount that we have made it through this last year as well. The trials for us have been many…patience, willingness, wanting to give up so many times we learned to balance our needs. I have written more this year than I have in a long time and am merely waiting for an end to my book to finally put it together, at the goading of many of you.
A lot of energy has been sent our way, and as we retrospect over the last year, we can see the patterns of happenings. We have been blessed to open up to so many new people, to solidify long standing relationships and truly get a clear picture of where we stand in people’s lives. Our lives have been touched by so many who report the changes in their lives because of our story. This truly makes US feel worthy of our blessing.
What is in store for Orien Rose? Who knows? She has survived a near fatal accident. As we revisit the occurrence for another article for the Times Herald Record located here, we are reminded of the numbers, the statistics, the fact that 1-3cm to the right and she would have been dead. We pull out various PR pieces we have done for the Ronald McDonald House and Hasbro, pictures of Orien Rose a reminder of our miracle. We are reminded that the slice up her face was centimeters outside the tympanic membrane in her ear, yet she can hear. That the slice through her face damaged her tear duct and we were told we would forever have to put drops in her eyes to keep them moist, yet she tears. We were told she would be in PICU for weeks, the hospital for months and rehab after that. We left PICU after 4 days, HASBRO after a few weeks and rehab for an even less amount of time. Yes, it has been a long year, but as Orien says, “when you’re in the middle of a miracle it’s rude to say, ‘hurry up.’”
So here we are, getting ready for surgery. The doctors’ intention is to finish it up Tuesday, to be done with the inside of Orien Rose’s head. The scar on her face by her eye is almost unnoticeable. The scar on her cheek requiring more treatment, scar massage and care…but she is young and man is she a trooper. She was taught at Free Spirit how to massage the scar, and is doing so every day now.
We returned from Free Spirit glad to have been able to attend. For me, the stress wasn’t lessened, but the rest was increased. Time moved too quickly for me that week, but I was glad to have another week home before we left again. Finding balance in that, we moved forward to tie up some loose ends and to get ourselves situated for the next few weeks. We exchanged our festival clothing for “real” clothes and packed the cars.
We left for Rhode Island on Thursday evening about 5pm. Not too much traffic at that time, since we would hit Danbury about 6pm. Generally we leave later, but I was anxious to get on the road, anxious to begin this next leg of our journey where we get Orien Rose’s skull work done.
Orien Rose and I went to drop off “Zenzilla” at my mother’s house before we hit the highway. Our other two dogs found a thought in my mind, a slight pang of missing, knowing they were being well taken care of and so loved, the thought passed quickly.
Orien would be trailing slightly behind us as we left him home packing. When we finally got on the road, we were within miles of each other. We decided to take two cars after discussing our plans for the upcoming weeks of time.
I need to travel home on July 1st for a mid-term and will attend my Wednesday night class as well. Depending on what the plans turn out to be, I will either drive back to RI from school or return home to wait a day or two for Orien and Orien Rose to come home. I am not sure if we will be home for my mother’s annual Fourth of July party.
Why I decided to attend a Summer semester…who knows. I wanted to be done with school by now. I wanted to be pursuing other certifications at this point. Orien Rose’s accident set me back a year, and for whatever reason I believed I needed to jump on it again. I think there was fear, really, that I would give up, that I would just stop. I definitely have wanted to. I am tired and my brain is definitely not where it normally is. This has gotten a little frustrating for me. Then I remember what Orien Rose goes through to sometimes remember simple things. I remember what it looks like when we can see her brain finding a new route and I breathe.
So we are here, at the “Cottage” spending time with Grampy and Aunt Toni and waiting on Aunt Sandi’s arrival this evening. Anxiety is increasing for Orien and me as we get closer to Tuesday. Orien Rose is anxiously excited for Aunt Sandi’s arrival. Tonight we will all go out to dinner.
I make a conscious effort not to slice, but feel I am failing in staying connected. So I just keep walking away. I am in desperate need of cuddling, touch…but then I don’t want it. Keeping the Emergence group fresh in my mind I ask myself if I am learning from my suffering and use blame as a measure for my pain. If I am blaming, I am not learning, I am merely trying to avoid my pain. My fear grows and then subsides as I anticipate Tuesday’s surgery. I tried to escape into a book, and read a whole one yesterday. It was enjoyable, some of the time, but mainly provided my dreams with fresh material to keep me from resting fully.
Sleep has not come easy for all three of us. Orien Rose is excited about the surgery, but has expressed some fear as well. I am glad she has been vocalizing it, allowing for different outlets that are not all physical. Orien is a little edgy, I am edgy…we have gone out, sat some, gone out again, and sat some more together and independently. Time feels as if it moving so slowly, and then it seems as if a whole day has gone by without even taking notice of the fluctuation in our emotional state.
The past few days, we have gotten phone calls, emails, comments on MySpace and texts. Each one brightening our day and reminding us, when we feel alone, that there are so many supporting us. We appreciate ALL of you! Orien Rose loves hearing the messages and reading the emails! It allows us a moment to sit together and connect. This is a great tool when we are sitting in our dis-ease. It is a moment to step out of ourselves and connect not only with each other, but with all of you…our community, our support, our “clan” again. We are big believers that it “takes a Village.” You have all shown us just how powerful that village can be!
Thank you for continuing to read! I will update a little more frequently now that we are in the middle of major movement.
Blessings to all of you!

6-16-08

2008-06-16T09:42:00.000-07:00

6-16-08

Today would have had us traveling to Rhode Island if last Monday had gone very differently. However, we have learned that things change. Simple. Period. Things change and most of the time, you can’t do anything about it. Though we can struggle to regain power, it isn’t until we admit powerlessness that the pressure can dissipate.

Last Monday began with a cheery feeling that we would all embark on our journey to Free Spirit. Returning refreshed and rejuvenated we would drive straight to RI for Orien Rose’s surgery. A journey that we anticipated with butterflies in our bellies as we knew we would have a chance to thank, again, those who worked for us. We knew we would see people we hadn’t seen now in TWO years. The children got bigger. Two years is a lot of time for little ones to grow.

Then I made a phone call, at about noon, to Plastics to confirm that on Monday, June 16th (today) we would go for a pre-op appointment. That was when I was told…”oh, you are no longer scheduled for that date. Something came up.” So, of course, I was thinking to myself…”what the F*%!” We were 100% with both offices. Neuro and plastics BOTH confirmed the date with us. We finally made the call to CA to say, “yes, its time to come.” They were coming. We were leaving in less than 24 hours for a retreat.

But, things change, and after 6 hours on the phone back and forth with plastics, neuro, family…we were exhausted and no where closer to finding out WHY and if things could change again. Orien is amazing, I have to say, in fielding the medical world. He knows the language, he knows where to put pressure and (mostly) where to back off. It is like the fine art of reflexology, where pressure in one spot triggers healing or movement in another. This is not my forte. I struggled for the two and a half hours until he got home to take over the dance of the phones. All through it, though, we stayed connected to each other.

My concern was what would keep them from doing it again, from saying…oh, you are no longer scheduled for that date. We know that it is essentially out of our hands, but I think we made it clear that another time would be extremely unsatisfactory and we would take larger measures to make sure Orien Rose was taken care of. I mean, the child has been wearing a helmet for over a full year! It is time to give Orien Rose her head back.
So, we embarked, without answers on Tuesday to Free Spirit. The car was packed and ready to go Monday night. We just needed a little sleep and we were off. There was no rush, nothing too controlled, no stress about what time we got there. The ride was pleasant as we talked about who we were going to see, some of the classes we wanted to take, the rituals we would be apart of. We talked about who we hoped would be there. Then the phone rang as we were nearing the event. The doctor’s confirmed we would not have the 17th, but the 24th instead. Roll with it. What will keep them from changing again? Roll with it. I need to change a LOT of things around…ROLL WITH IT! Okay, we have our answer, move on to the festival.

And we arrived, and it was great. My head not fully leaving the fact that Orien Rose’s surgery was coming up. My head not fully grasping that it was time to relax and sometimes so overwhelmed all I could do was rest. I was gifted with an amazing massage, one that worked out over a year of tension from holding the world. When I got on the table, the beautiful woman said to me, “what do you want.” I said, “Take all of it out.” She said, “All of it?” “Yes,” I said. It was no joke. She is a healer of the finest degree, very much affected by my last year as well. She could see what I have been carrying. She talked to me and gave me the permission to let it go, sometimes having to be slightly firmer as I resisted. I closed my eyes and as my shoulder muscles were being released, I could see the opera. I could see the Viking woman, blonde braids and helmet with horns singing her heart out. I could see her struggle slightly with her breath as the immensity of the Universe overwhelmed her, then suddenly the Earth appeared in her hands and she was no longer slipping.

Orien Rose was so happy to see so many, and they were happy to see her. Over and over, people came to us and told us how happy they were we had made it this year. And two years had gone by, not just one missed Free Spirit, but two years. For some of the children, there was drastic change. But Orien Rose went to school at Lady Amber’s and learned what they taught. This year, when the bell rang, she was there and ready to go. No one had to tell her to be. I could hear her being reprimanded in some instances for touching things she shouldn’t. More so, however, I heard her participating and sharing and asking questions. Each meal, she ate apart from us, meeting new people and talking to them. She saved the magic show on Saturday night (Magnus told her so), getting up with one cue and finishing the task another couldn’t. Orien Rose got a kick out of telling Magnus we have been watching him on television….lol….

On Thursday night, I called in to my team teleconference where we worked out the logistics of the upcoming meeting that I would no longer be able to attend. My team is wonderful and they are stepping up beautifully! Of course, they loved the background goings on as Lori and I sat outside the tent talking on speaker phone. I am sad that I will not be able to attend. I have put so much energy into it, but I also trust my team to more than make up for my absence.

I took some classes and have more direction. My life keeps piling on top of itself, showing me doorway after doorway of opportunity and I can’t wait to share it, put it out there, do it! All of this from sitting for a few days with amazing people as I watched Orien Rose have some Freedom that she longed for. Very few meltdowns were had (though there were a few). Thank you to all of you who spent the last few days with us.

Today is Monday, June 16th. By Wednesday, I will have my business for the next few weeks wrapped up. Hopefully, my papers for school will be written and I will pass the semester. But, really…none of that matters. I may not be “at my best” in some areas of my life, but I am still good. It has been a year of time, and all of that will still be waiting for me. If it is not, then it wasn’t meant for me.

It has been so clear to us that what matters is US; Orien, Orien Rose and I. Our relationships matter, being present matters, connected matters. Orien, Orien Rose and I are what are important. We know that we would not have gotten this far without the aide, energy, blessings, prayers, and actions of those around us. We live this 24/7. In dealing with the doctors we need to remember that they are not. We live this 24/7 and in our, sometimes, loneliness we need to remember that others are not. We are strong and we know how to reach out. We are blessed in so many ways, and yes…sometimes blessing can weigh heavy. Our burdens have been shouldered not only by ourselves, but by others willing to help in our healing. Our dogs, who were not able to get the love they needed from us, have a new beautiful home (thank you so much Shannon!). Though we are struggling financially, we are doing it. We are readjusting our needs, readjusting our mental state and our thoughts to keep our heads above the water. Though sometimes the exhaustion leads us to believe we are drowning, we are actually swimming hard, moving in the right direction…or a boat comes along to give us a ride for a little while.

The coming weeks will see an end to one leg of this journey and the beginning of another. We are staying as calm as we can, expressing and releasing our anxieties in a spiral of energies that get absorbed into the Earth. Orien Rose is vocalizing her fear now, and we are talking about the positives of the surgery, we are talking about what she will be able to do again.

For now, we are asking for people to put something on your alarm clock on Monday, June 23rd, something to remind you when you wake up on the 24th to take a breath for us. We will be admitting Orien Rose at 6:30am on Tuesday, June 24th where she will go through a lengthy surgery to reconstruct her skull and the facial (orbital) part that needs to be finished. The goal is to have it completed on the 24th, to get ALL of it done. We would like this to be her last surgery.

So, please envision this with us: Orien Rose will ride horses again, she will continue her Tae Kwon Do training, advancing in her degree. By the end of the Summer, Orien Rose will be able to swim in a pool without a helmet because her head will be completely healed. The doctors’ hands will be steady and swift, they will be focused, precise and artists of the finest caliber.

For you: thank you again for everything you have done. Thank you to all of you who are stepping up to fill my absence on the 24th (I am so proud of you ladies – my team). Thank you to all of those who came up to us at Free Spirit and gave us the hugs we needed. Thank you to all of you who keep sending us energy, cards, well wishes, phone calls, emails…time on the porch! Many, many, many blessings to all of you!

6-6-08 We have a surgery date!

2008-06-06T13:17:00.001-07:00

6-6-08

Okay, this one is short and sweet (we’ll see…maybe I will get writing). We went to RI yesterday and got the green light from the Plastic surgeon. We have a date of June 17th for Orien Rose’s surgery. He believes this to be the last one. During this surgery, he will fix up more of the facial portion of the injury and repair the bone that has settled since the last surgery, harvesting bone from the back of her skull. He will also be putting in the prosthetic piece to replace her skull. Her bone should grow directly into this. Meaning, we should not have to go in again!

So, we leave early Tuesday morning to go to Free Spirit, our annual spiritual retreat that we had not missed in over decade until last year. Orien Rose is happy to be getting back, as are we. We stay there until Sunday, June 15th. From there, we will drive home, drop off the camping gear, pick up the “real” clothes and head to RI for pre-op on Monday, June 16th. We will admit Orien Rose at 6:30am Tuesday, June 17th for surgery.

Needless to say, we are all a little anxious and it is imperative that Orien Rose keep her hands from her head. There will be no swimming from now until surgery (and sometime after), which means the Free Spirit pool will “haunt” her, but we will have lots of fun by the fire and drumming.

We will be in RI for two weeks following her surgery (with me coming home for the Waterbury Event on June 24th and class on June 25th so I don’t miss too many of them, then back to RI).

Thank you all for keeping us in your thoughts. As we get to the surgery, I will update more often so you know how it is going. For now, we are centering, grounding, releasing, dealing with the “real deal” and letting anything else wash itself away. We are blessed, and you all make that so!

5-28-08

2008-05-28T06:30:00.001-07:00

5-28-08

Perhaps I am avoiding it, perhaps I feel I don’t have much to say. Either way, I am writing because you have asked me. You have asked me what is happening, you have sent wishes and thoughts as we mark a year since the accident. You have reached out to us, anticipating what we may be feeling during these moments. So, thank you! Thank you for keeping us in your prayers, thoughts, and energies. We are appreciative and each time we begin to struggle beyond our capacity, the Universe sends us another phone call, email, card, or some other kind of connection.

We are struggling right now, but not as much as we have in the past. It reminds me that it is easy to ask for help when things are really hard, but not so much when they are just hard. Because I like to introspect and pull things apart to look at the pieces, I keep analyzing what I am feeling, why I am feeling it and what I have come up with is the long, hard road. The adrenaline of the accident and the months that followed kept us going on pure need. Today, we find ourselves with mundane struggles catapulting the underlying hopes and fears.

Recently, Orien Rose came into the bathroom when I was in the shower. She said, “Mom, look!” As if I could get a moment alone…lol… I told her to give me a moment and she said, “no Mom, look!!” And as I pulled the shower curtain back, there she was in her Tae Kwon Do uniform, her advanced green belt (tied correctly she showed me) around her waist, her gloves and foot gear on, and her helmet (not the one she was supposed to be wearing) and she says,” I am ready to spar!”

Oh boy, my heart sank and laughed in the same moment. She is ready for the surgery, too. She is also scared and has finally begun to express some of that rather than picking her head to avoid it. Yes, she got to her head again last week, but at this point she is so healed that the spot is miniscule.

Next week, I will drive to RI to meet with both plastics and neuro to talk to them about the impending surgery. I have put in the call to let them both know that we are ready. She is healed, she is ready, we are ready. Hopefully, the doctors are ready. Plastics wanted three months from the time of her head healing. June 5th will be 9 weeks, which puts us at the first week in July. These are OUR plans. Nothing, as we have learned, is set in stone.

So, we go about our days, making phone calls, working as much as possible and trying to survive. Yes, we are back to survival, living at the basest we can manage, and even then we sometimes feel we are drowning. But I believe in the power of Will and the Universe’s desire to take care of us. I put my prayers out there every day. I take a moment in the morning to listen to the music and feel my body and thank the Gods that my feet work, that my legs work, that I can feel the weight of my stomach, my heart, and then Orien turns over (now he can hear the music) wakes up and hits the snooze button and I am frozen until I can come out of shock and resume my morning mediation. J

Then the day begins…

We are blessed by our routine, that Orien Rose is in school and each morning is a normal struggle between parent and child to get the duties of the morning met before the bus. This morning, we sat down at the table together, all three of us, and discussed what instrument she will play next year. I try hard not to sway her decision, as I desire my cello greatly (I have yet to get one that works). I remember the way it felt in my arms, cradled by my legs, a full body wave of motion as the music played deep, enveloping me. There were times I would get so lost in the vibration of the wood, the movement of my body, and I knew that was what love was.

Orien points to all the instruments he played on the list they have given her. I talk to her about all the instruments I played. She tells me she wants to play them all. That’s my girl! I think. But, she decides on Violin as her first choice. Aunt Kelly will be proud!! And, Flute as her second choice. Then she says she wants a third choice…Cello (wooohooo, I am thinking!!!)

All of this, and a year ago there was a moment that I knew she decided to live. She has stuff she needs to do. We all have our fears. We all have our stresses of daily living: enough food, money, time…but each day brings with it so many blessings. In a moment of pain, if I can look, really look, at my family the pain vanishes. If I am in pain, and I can peek at my reality, it lessens opening the door for more healing.

So, next week we will go to the doctor’s and hopefully have a clearer picture. The following week, we will go to Free Spirit, our yearly spiritual retreat. This is where I get recharged for the year. This is where I can sit and watch my child grow up with the community that is so much a part of her. This is where I get to relax, talk, be. I have some work that needs to be done, some of it will, some of it maybe won’t depending on how the Universe deems. Orien has work to do…and Orien Rose…she is the manifestation of that work. I see that now!

So many of you talk about her survival and thriving as a result of how we raise her. I see what you are talking about, but I still can’t take the credit for it. We are doing the best we can. With all of you, that best becomes incredible!!

4-24-08

2008-04-24T10:49:00.000-07:00

4-24-08

Today is Abigail’s birthday; an event that I am so glad happened as she, my baby sister, is one who made it possible for Orien Rose to survive. She is the little girl of 10 years old, who didn’t give up and took her lesson of only ten minutes prior (on how to start the boat), and got the boat started. She had drifted that day, after Orien killed the motor to jump into the water seeing Orien Rose surface face down. She, Abigail, drifted and could have been helpless. But she wasn’t, she was persistent.

She got the boat to them, she held Orien Rose against the boat for Orien to get back in, she yelled at Orien Rose to stay awake. She yelled that she loved her and kept her conscious as Orien drove the boat to help. I can’t even imagine what she saw and went through, what she holds with her.

I have heard her say that if it was her that had fallen in, she wouldn’t have survived. I have heard her question her strength. She is so strong, though. She is a hero. I am so glad she was born! Happy Birthday, Abigail!

As we near the end of a year, we plan to celebrate life on Memorial Day weekend. We plan to hang out at the Cottage, and do what we normally do. We are feeling that it is coming up on a year and as such, I have looked back some. Still very much in the middle of the miracle, I am not always afforded the ability to retrospect. Being that I can some days is a sign, though. It let’s me know where we are at.

On Monday, we fitted Orien Rose for a new helmet knowing we were coming into the Summer months and that surgery is put off for a little bit. This time, she went with a very cool blue snakeskin. The new helmet has ventilation holes in it, but no longer has the larger hole to get air to the open portion of her head. At this point, the hole was a detriment to healing as little fingers were getting in.

We spent a few days in RI, playing on the beach, fishing, being. It was a nice few days. It was calm, peaceful, and right. Orien and Orien Rose are on Spring Break and I am home in time for my class tonight. On Wednesday, which is what you are all waiting for, I am sure, we visited with the plastic surgeon.

At this point, the goal was to get her in there with a healed head. There has been no puss for a few weeks now and only minimal scabbing. The scabs were gone by the time we got to the appointment on Wednesday. What the doctor saw was basically a pink spot, still traumatized, but healing nicely. He asked us how long it had been that way, I said 2.5 weeks, Orien said 3. He was pleased. Our strict nightly regiment of shower and cuddled to sleep (head without band aid) and then morning band aid as soon as she gets up is working!

The doctor then asked us if we had any more questions. No, was our response, but Orien Rose chimed in with, “so does this mean I can have surgery now?” J She said what we were all thinking. The doctor responded by smiling and saying it was something on all of our minds. That now, we need to coordinate with the neurosurgeon as well. He is including the three weeks of healing in the clock, and expressed a total of three months post-healing. When I said that puts us in late June early July, he would not be pinned down, but acknowledged that was a probability. He wants to see us in another 4-6 weeks to check up on our progress.

We picked up Orien Rose’s new helmet and then returned to the Cottage to clean and close up. There was some tension manifested as we cleaned, battling with wanting more relaxation and needing to get on the road. There was some tension; I am sure as we think about what is next, whichever direction it goes. We questioned our negative thoughts and concentrated on the positives. Orien and I talked and questioned our ability to get through this, and then…once we get through the next step, where are he and I? In so many ways, our relationship has taken a back seat, and in so many more ways, it has blossomed, become more compassionate, harder and yet more understanding. There is a depth that has fleshed out our commitment to each other, a death of certain fears, a renewal of passion (in both directions) and general growth. Some days, I feel as if we have grown so strong and others, I feel as if a light wind could knock us to our knees.

Life is getting situated, but sometimes I feel as if it were just yesterday that we resided in a hospital. There is still a pile of mail as you enter my house and one day, I may just burn it all. Debt has come and taken some luxuries, but our home is beautifully utilizing what we have collected over the years. And…working diligently, it is almost gone!! Some of our toys are minimized, but we are connecting so much more. Who cares that I can’t get internet on my phone! When I am out, I should be enjoying being out and what I am doing, rather than checking 30 times to make sure I respond as quickly as possible. The way we want to live our life is the way we are living it. We are proud of our energy in our home. I can walk into each room and see there are parts that we have done together. I can look up at the shelves we put in the living room, decorated with some fabric I had laying around and say, “we did that…together.” This time, forced so close, has allowed us opportunities to find ourselves within a tight unit. It has allowed us to be ugly AND forgiving. It has shown us the beauty in our suffering and the pain of our blessings.

Each morning, I light a candle that was sent to us, in honor of our relationship. I stand still for a moment as I bring the flame to the wick, and I pray for strength for all of us. I pray for clarity and the willingness to put one foot in front of the other to do the next right thing. In that moment, I see you all, smiling at me in some David Bowie/Jim Henson Labyrinthesque scene. This scene has me looking in the mirror (really closing my eyes) to see you all standing behind me, singing, praying, chanting, sending energy in our direction. When I turn around, you are not physically there, but you are with me. We feel you! As I write this, and as you read this…we feel you. Thank you!

Blessings

3-25-08

2008-03-25T07:52:00.000-07:00

3-25-08

For the past few mornings, I have woken up thinking about what I want to write, the words hammering my head like the Ringing Rocks in PA, drawing beauty from action. And I knew that it was almost time, but I didn’t have enough information. I have gone to bed, and in the state of hypnagogic phenomenon, had visions of what was to be put on paper. And I have hesitated, waiting until I had more to tell you. I fear the writing itself was sacrificed in order to collect information.

And I am reminded of being connected, and once I make the information more important than the person(s) I have already lost. So, I am disappointed in myself, or perhaps I am just scared. I want to talk to you, I want to tell you about the past few weeks since I last gave an update.

There is a part of me that feels I should be through this already, yet the opposite is actually happening. I know (KNOW) that is not the truth and this is a process, but I don’t want to feel as bad as I do.

I envision Orien and I like chalices, full to over brimmed capacity. Sitting on a table, in a still room, we can maintain the perfunctory of the fullness, not moving, being still, breathing carefully. It is when a child, or animal, or wind blows even the slightest, that we are in danger now. And recently, for both of us, it was as if Orien Rose came running through our small house, her head just barely clearing the TV armoire door. She came running through on the wooden floors and shook the whole room. And there our cups went, not just spilling slightly, as we have managed in the past, but toppling completely.

I am not saying it was Orien Rose, only using her as a picture to describe how I, and I am assuming Orien, have been doing. I can let it out slowly, in little spurts, but every once in a while I feel like I can’t do it anymore, I can’t keep going. I feel lonely, abandoned, void of company in times like this, yet I know there are so many around us!

The other day, a friend “accidentally” called us from Maryland. She meant to call someone with a similar name, and the phone dialed us instead. She and I spoke for a little while about taking care of ourselves, doing what we need to do to maintain some balance, some sanity. We talked about dreams, and exhaustion. We talked about healing and pain. And then she said, “I know you probably have support all around you, but I wanted to let you know that I would be willing to come from Maryland to New York to hang out with Orien Rose so you and Orien can have some time together. Or, bring her here, and let her hang for 48 hours, take some time.” That moment made me feel worlds better.

I keep having the feeling that I just want it to be done. Once it’s done, I can fall down, I can loose it, I can go away for a few days WITH Orien, just the two of us. Perhaps we can fall apart together. We have each taken a few days here and there by ourselves to recharge. We know how to do that. We are good at maintaining our energy.

It seems, however, that the past few weeks have been extremely difficult. Perhaps we hadn’t taken time. I can look back and see that there was not much. I have not taken time, he has not taken time, and we have definitely not taken time. We are both working hard to make sure we have the basics. We are making progress with bills, but they are unforgiving and they keep coming. We have cut our expenses and I have increased my income. We are learning to live simply again, and in an amazing way, it feels right. But it is a journey, a reconditioning.

We have both felt the need for more connection and less commitment. We have reached out to many people in varying circles of life, but it has been almost a year and we talk about how we fear our miracle has burnt people out. We fear that we have lost a few who meant a lot to us. Then we think about it again and realize that life situations like this are phenomenal filters.

We are still in need almost constantly. We had to learn to ask for help, and in the beginning it was easy. Our needs were so raw that we didn’t think about it. It is not so easy now as life returns to the daily grind of getting those needs met.

Orien Rose is feeling all of this. She knows we are stressed, she knows we are anxious. She has her own anxieties. Though school is going well, she knows she is different. Her biggest peeve is that the kids treat her differently because of her helmet and what that means. She can feel others anxiety around her.

Orien Rose is doing well, though. Sometimes she comes home and homework takes us 30 minutes. Sometimes she comes home and it takes almost 2 hours. Her test scores reflect the fact that she is retaining learning as well as whether she has had an “on” day or an “off” day. Sometimes the tests are in the 90’s and sometimes in the 60’s. Either way, I can ask the questions at a different time and she will give the correct answers. So all the numbers tell me are if she was connected or not that day.

Her brain is healing. We know that the neurological part will take years. We have had discussions with neuro about how nerves heal. We have spoken about how they heal about a half an inch every six months, and as they are finding not just from the brain out, we will be finishing up the first inch soon, with an inch and a half…a year and a half to go. I am a numbers person, I know that is not an accurate look at my daughter’s healing, but it is something I can put my mind around. It keeps me in the moment, for now, realizing this is an ongoing process.

It is hard, sometimes, to see the difference. Every once in a while, though, it’s as if she peeks through and shows me some amazing growth. I know that Orien Rose is strong, she is willful, she is powerful…but every once in a while I SEE it, I feel it to my core that she is healing.

I spent an hour with my therapist talking about my inability to let myself go, to loose it largely, to fully empty the cup. I know it will feel good, I know it needs to be done, but I don’t want it to have a major effect on my family. I also know that holding it in is no good for them either. So I found myself, over a week’s time, moping, crying, curling up in front of the television, taking a lot of baths, burning candles galore, making my environment comfortable. It took me a week, but I did it slowly and with little explosion. I found that I can be incredibly forgiving of myself, and even fell in love with my ability to be sad.

Recently, Orien Rose, Orien and I walked through, re-visited the day of the accident. We agreed to be filmed as part of the hospital’s fundraising Gala. I don’t think we realized the intensity of the project. We started at 7:30am that day. We went to the plastic surgeon’s visit where the film crew had already been interviewing the doctor for a half an hour. Then we went through our visit with a camera crew taping most of it. Then on to another CT scan to get an image for the prosthetic piece replacing Orien Rose’s skull.

At this point, they were talking to us about how we felt walking down that corridor that day. Orien spoke of being wet and thinking he was hallucinating as the walls and floor depicted sea creatures. I spoke of seeing the doors close and my only connection being their voices. It was this moment, not the ER, that I had lost it, that I had fallen to the floor in a panic. I spoke of the nightmares I have now, the terrors that keep me awake.

From there we had more taping of seeing nurses, saying hello, talking to the hospital staff who had taken amazing care of us. Then Orien and I were interviewed individually for about 40 minutes each. We were asked questions about that day. I was not in their for Orien’s interview, but I know it was hard.

I was asked where I was sitting when I heard the ambulances, what I was thinking. I was asked what I saw when I got into the ER, what I thought, what I did. I talked about the singing, Orien and I singing to Orien Rose and the staff singing along. I sang for them. Yes, I sang on command, and I did a good job. I didn’t hesitate. I was in a mode, transported back to the day of the accident.

I don’t think either one of us realized the extent to which we would revisit that day, that we would visualize, re-feel, re-experience the day of Orien Rose’s accidents and all that occurred. We found ourselves retreating to the Cottage before going home, both of us passing out we were so exhausted. And then began the raw, nasty, fearful feelings again and neither of us saw it coming. It wasn’t pretty for a few weeks in our house. It was tense. It was dark. It was lonely. Life events coinciding with this made it harder and we felt so lost.

And we are up in the air at this point about the next surgery. Orien was supposed to go away for a few days last week, a little reconnection with self, and the doctor’s office called to change our appointment. This caused Orien to cancel his plans. Within hours, the office called back to tell us that they were wrong, we didn’t need to come in then and that the Neurosurgeon we had been using would not be working with us. But perhaps we wanted to come in and meet the Neurosurgeon we would be working with?

At this point, the time schedule is in the hands of the plastic surgeon. So, after plans were cancelled and changed we decided that it wasn’t necessary to drive 4 hours to meet someone we have already met (in the hospital) for them to really tell us nothing new. It was frustrating, to say the least, but a good lesson. We work with a TEAM of doctor’s. And so, we should work with a TEAM, not put all our energy into one doctor.

So, we made a few phone calls. On Monday, yesterday, we arrived at the plastic surgeon’s office getting ready to schedule an interim, minor, surgery as we had discussed as a possibility due to Orien Rose’s head not healing all the way. We had prepared ourselves for a possible minor surgery in April. When we got there, however, the doctor said it looked good, it could heal on its own, showed me how to clean it and said he would see us in a month to take a look. THEN he would begin the discussion of reconstructive surgery.

So, after all this lengthy writing, this is what I have for you, the same as before. We are not sure of the date of Orien Rose’s surgery. We know, at this point, that it won’t be until AT LEAST the summer. The plastic surgeon wants at least three months of healed head before he will go in. She has a small spot, where there was a flap that pushed out a mass of ingrown hairs and got infected. Orien Rose just finished a 10 day course of antibiotics utilized to help it along. It is looking healthy now, but still needs to close.

There are some decisions we have had to make. Do I go to school? Do I stop for a while? How much do I increase the weekends away from my family in order to make money? Does Orien teach this semester? What do we do with the dogs? Can we bear to get rid of them? To find them a home?

For now, I am in school for two classes a semester and I am struggling, but I am doing it. I will be done in May 2009. I am working as much as I can while still maintaining at least one full weekend of time with Orien and Orien Rose. Orien will not be teaching. He is doing well with his job at OUBOCES. He loves it there, and he still does work on the property. The dogs…

My biggest heartbreak in all of this has been the dogs. I love them immensely. They are good dogs. They are loveable and cuddly. We have tried to accommodate them, the build their dog pen, to walk them frequently (including Orien Rose), to play with them. But…and a big one…we cannot keep them. It is too much for us right now and it is not fair to them. So, as we approach a year from her accident, that is the time limit we have set to find them a good home. If we don’t find them a home before Memorial Day weekend, they will be going to a shelter.

So, this is what I ask for this post. Please help us to find them a good home. Please envision a path opening up to a beautiful place with people who have an amazing heart with room for our dogs. That is the direction my energy is going in. We are visualizing, praying and opening up our hearts to let go.

We, as always, are appreciative of your support. We continue to thrive because of your kind words. There are occasional cards that still come in. The calls and emails to check in make us feel energized. We feel so blessed to be walking in the middle of a miracle, but we know that is it still a little heavy.

I am making my way slowly through thank you cards, each one bringing back memories and feelings, so I have to do it slowly or it hurts too much! I want to personally thank you all, to remember what you have done for us and continue to do. I have a box of cards that are beautiful and one day will find a home in a large book for Orien Rose. But for now, I am not ready. We are not ready to go full force into it.

So as we slowly make our way to your personal thank you, please accept this in the meantime. We are blessed to know you, to have felt your energy and we continue to hold you all in our thoughts as we reach for connection. We are powerful and healing because of your support, love, prayers, healing and energy sent our way. Orien Rose knows that she has been touched by all of you and we are grateful for the massive amounts of energy that you all spared to save our daughter’s life. Thank you and blessings!

2-17-08

2008-02-16T13:14:00.000-08:00

12-16-08

I don’t have much to give you, energy wise, as I write this update. It has been an exhausting few months, to say the least. So I am going to keep it short, simple and to point.

The day coincided with a video we agreed to do for Lifespan (the hosptial’s organization) and their fundraising gala. So our day began at 7:30, after the interview with plastics already began.

We met with the plastic surgeon on the 10th to discuss Orien Rose’s next surgery. He has not seen her in about 6 months and was pleased with the work he has done. He will not reopen her face, but instead give it a “treatment” that will aid in softening the scar and speeding up the healing. He wanted to take no chances on aggravating that spot again. He spoke to us about the procedure and how he will shave some of the bone on her eye (there is a bump there) and fill in the crack that has formed. This is the spot they had to pack with soft tissue to keep a barrier between her nose and her brain as the Dura Mater re-opened with the jostling of the orbital reconstruction.

The plastic surgeon was concerned with the spot on her head that now hosts two small scabs. Not seeing her in months, and not seeing the progression, he was greatly concerned and wanted us to take yet another trip to ID. Orien worked his magic and got us into see ID between our plastics appointment and our 10am CT scan. It was determined that nothing could be done, and she was fine (ID said).

So, after a short delay at check-in due to paperwork, we were on to the CT scan and revisiting the moment I fell to the floor watching the CT scan doors close. I could hear Orien and Orien Rose inside, and I spoke outside about fear and nightmares. I spoke about what it was like to be in that long, sterile hallway…alone. My only connection to the two most important people in my life was through a closed door and connected by voice only.

From the CT scan, we visited floor 5 where we said hello to some of the nurses, got some more good shots and then Orien and I were interviewed separately. This took about 40 minutes a piece, where we revisited our experiences with the accident and in the hospital. I don’t know what I said. I know I cried a lot, though and tried to maintain stature as I wanted to say something important, something that would let people know how important the work Hasbro has done is.

After the interviewing was over, we had one last stop. We had to go to the plastic surgeon’s office so they could take pictures of Orien Rose for the upcoming cranial reconstruction. Here we discussed a time limit for the next surgery. Neuro wants it in April, plastics is saying they will not operate if there is even the slightest scab on the head. And…once it is healed, they want to wait three months from that point. So, this is where we step out and let plastics and neuro do their dance. We will keep you updated once we know more.

As always, thank you for your support. It is much needed as the energy picks up around schedules, more appointments, doctor’s schedules and preferences, etc… Orien and I are being hard with each other as stressors pick up. I know that I need to readjust to the changing energies and greatly appreciate the calls that still happen to check in. It keeps me grounded in what is important, it keeps me focused.

1-28-07

2008-01-28T09:34:00.001-08:00

1-28-08

Orien Rose is hanging in there, as are we. Life has given us a lot to work with the past few months and we are pulling on all of our resources. We are looking forward to the future, inspecting the past, and generally taking it day by day.

We recently had a CSE meeting where Orien Rose not only has a 504 (medical) classification as TBI but a Special Education classification as well. She will get what she needs from school. It is more official now. School has been incredibly understanding and accommodating. Orien Rose’s academic testing shows her intelligence is still there! She has the ability to remember past learnings and the ability to learn new things. Her fluency is stressed, but typical of brain re-patterning. She understands the visual the psychologist gave her of finding new bridges! When something is hard, Orien Rose has been given the tool to understand that “bridge is out” and she needs to go a little further down the path to find a new one. It works. She is utilizing it, and stress has decreased.

Orien Rose remains unfocused in a lot of things. She is curious, she is struggling with the lack of a physical outlet, but she is being aided by a 1:1 in school that helps her to get organized. Since this person has been implemented in Orien Rose’s day and since the bus changed situation, the stress she has been feeling is relieved slightly. Orien Rose no longer comes off the bus crying and frustrated. She is better able to ask for a few moments to collect herself. And now, when she starts to cry over small things, we know she is tired and can accommodate that.

We spend our time talking about the trips we will be taking, the festivals we will be visiting, and the ones we won’t. When I tell Orien Rose that we can’t just go to the mall right now, she says, “oh, because of the Greece trip?” When I answer her with a resounding, “Yes, “she gets it. She is looking towards the future, having a time line! It is great to see her thinking of moments beyond the “now.” Our trip this summer is not lost on her either. She is so excited to drive across the country, to go to CA and back, to see her cousins, to spend time with Grampy and Mama and Papa…to caravan with Grandma and Abigail and Uncle Andrew. We started to solidify those plans (books and maps in hand) the weekend of Orien Rose’s accident…so the final stages are being finished now. Though, it looks as if those plans will go through a new morph, so we will see how far we get. It looks as if we won’t make it the whole way due to time constraints of the people involved. Orien Rose and I will discuss it as it gets closer. Even if we travel to PA and back in the camper, she will be excited!!

Orien and I have strengthened our bonds and are beginning an exploration of our ideas and creativities. We are talking about our experiences teaching, feeling the empty nest, the longing to teach and wondering if the past seven years brought to fruition the beauty we expected, had no idea was there, is not there as we want it…and all the other reflections that happen when one phase is coming to an end and another is beginning. We are looking at what is most important to us, and seeing that it is all right here! We have been shown a massive amount of support, we feel the massive amount of support, we are blessed with the life we have! The support we have been shown has allowed us to connect to an even greater degree.

This past week has been rough, emotional, wonderful. I think Orien put it well when he said, “it ain’t pretty, but it’s beautiful!” I know he had a specific occurrence in mind, but I have been thinking about the past week, the changes that have come, and it fits.

Sara moved to NJ, off the property, two hours away. The dance of goodbyes, or avoiding them more so, has hurt. The growth and possibilities are beautiful! It is wild to ride a wave that has so many ups and downs.

And yes, the doctor’s visit. What I have received a number of phone calls and emails about. You are truly watching, paying attention, you truly care…and I think that throws me off a little, but that is not this story! I am honored to keep you informed…so here goes:

On January 23rd, we visited with ID who told us that Orien Rose is definitely infection free. They gave the okay to go ahead from their standpoint and to keep them informed of progress. We then visited with Neuro, who had some great news and some disappointing news. Neuro agreed that Orien Rose’s head looked fantastic and has started the clock to the surgery. We are scheduling it for April, sometime in the middle to the end. They will take into consideration Orien Rose’s Spring break, as we plan to be in RI for two weeks. The week of the surgery and the week following. This way, she (and Orien) will only miss one week of school instead of two. The exact date will be determined by the neurosurgeon and the plastic surgeon (info I will get to in a minute).

After discussing this, we were informed that our neurosurgeon will be leaving the practice as of April 1st and moving to CA. Of course, we offered to travel to him there, as we do have family there. He assured us, however, that he was sticking around to do Orien Rose’s surgery for us.

The next step is to meet with plastics. The appointment is set up for February 10th. Orien and Orien Rose will be going to that one as I am home that weekend with a full schedule and they are going to take a few days in RI before the appointment. I received the call today that Orien Rose needs another CT scan, and the prosthesis will be in production. We will schedule that appointment for the same day, as well as a few others for the pre-operation preparation.

Now, is where I, we, need the calm the most. As plans begin to pick up and coordination begins to happen the energy is rising. As appointments need to become more frequent and communications more punctuated, our energies are focused on staying calm, collected, excited! The anxiety that visits gets quickly visualized into love, especially from all of you.

Orien Rose knows her surgery is coming up, she is anxious too, so we paint, we cuddle, we hang out. We keep our focus on what is pleasant and steady right now. We move it away from the things that make us sad and towards the brightness of the here and now! We look towards the future, we respect the past and we honor most of all the moments we have now. It is a good life, a life you have all helped to maintain for us, with us.

After a long, exhausting and exhilarating weekend, I am glad to be home and glad to have been away. I learned a lot about my confidence this weekend, a lot about my fears and how to rise above them to realize my power. Orien had a great weekend, too. And as we drove home, we talked about all that we know, we talked about all that we don’t know. We were gentle with each other, little blame to be had. We allowed ourselves to be sad, without needing to fix it. We cried, not something we do often together, but that was healing, cleansing, solidifying.

Thank you to all of you who have checked in with me, with us. Thank you for continuing to ask how WE are doing. Thank you for continuing to lend support to the process that has become CO2 (Christine and Orien squared for those of you who have never seen us sign that way before). We are so grateful to those that have shown up, and to those that continue to show up, to move out of your comfort zone…there are no words that can express our gratitude. They are little moments, moments of importance, moments that have made things so clear for us! Essentially, we are keeping it simple!

12-30-07 - Happy New Year

2007-12-30T12:41:00.001-08:00

12-30-07

Emily is staying with us for a few days, a woman is coming to bury her dogs on our property, Orien and I will be away next weekend with the Goddesses, and our annual body transformation weekend is coming soon (the weekend after that). It is a good life! A life that we have seemed to embrace once again.

Orien and I spent the last few days cleaning, dealing with people’s pain, re-organizing the house, stepping in when encouragement was needed. It has been an interesting dance, a dance where we have remembered to take time for us in it, too. In that, we had brunch today with some pretty amazing people (thank you so much for the invite, Ed). Orien and I spent last weekend, almost totally in bed, fluctuating between tenderness and releases of anger (directed at neither of us in particular). We have reached outward and we have reached inward, battling our own demons (so to speak).

This past week has been good for all of us, but for Orien and I in particular as we have had some time to just be…in our home. Orien and Orien Rose are off school this week, and though I still had some work to do, I am pretty much on a break as well until Wednesday. We have all taken the time to reconnect with each other, to take an inventory of not only our hearts, but our home. We are grateful to be where we are, physically. We have embraced our humble house and have begun to make it extraordinary (in our terms) again. Creativity and resourcefulness have reared their heads again, saying, “PAY ATTENTION TO ME!”

I step next door, where we keep a lot of stuff, to rummage through bins of fabric I am going to use on the window dressing. I find myself being drawn into the mysterious boxes, getting inspired to utilize the stuff we have collected or held on to. It is a reminder that we have all that we need, that we are full and able to give back. We are on a return journey, where the thank you tour is becoming so much more. It is good to feel like we have something to offer.

And I am speaking a lot of “we” today, because I feel the unit again. I feel the trinity of power that is Orien, Orien Rose and I. I see my child becoming even more powerful as the days go on and she is challenged with understanding, mind and body, that she is strong (yet different). She is beginning to explore her anger over the way people are on edge around her, and her warmth for those that dare delve into her spirit. She has found some kindred spirits more readily since her accident, and I think she gets this, too. She is naturally gravitating towards those that are welcoming.

I am watching the both of them, Orien and Orien Rose from my bedroom window as they dig a hole to bury a woman’s dogs that she lost recently. The pain I can feel coming from Orien after he speaks with her is amazing. The process he is going through is beautiful. He feels the ability to give again, as well. We both spent two days cleaning out stuff, and reclaiming our space. A big part of it was our altars, both for the home and each individually. We have claimed our space together and separately. It is beautiful, it feels good, it is in preparation (I feel) for our next phase of giving/teaching.

We are very much still giving to Orien Rose. We are embracing giving to ourselves and each other (again, brunch was wonderful!). We are letting in those on the outside who need us. Orien Rose is teaching us so much about all of it. She is exploring new things, new creativities, new spiritual experiences. She has words to put to her experience that speaks to both Orien and I. She is bridging a gap between us. I think she realizes, not through discipline, that Orien and I stand together. She does not need to manipulate us, or work us against each other, she needs to work with us.

This has been an amazing thing to see in her. Before, if she wanted something, she would talk to me and then her father, unaware that we were aware. She would fight for her way. She would make her point. She would cry or yell. She would get frustrated. We stood together in our decisions, but it was difficult, especially when we agreed to disagree and went forward with a decision that either one of us, or neither, was truly certain about.

Now, we have learned that we both speak differently, Orien a body first person and me a mind first person. Orien Rose a product of both of us (though definitely leaning in one direction), has learned to navigate this already. She has learned to communicate to us in our languages, to create a bridge. This is a skill Orien and I have been trying to learn, and she has it already. It makes for much less yelling and suffering, and there is so much less blame on all our parts. It also makes exploration of our individual relationships a whole lot of fun.

Orien Rose is having some struggles, but we are working as a team (with much support) to heal through it. We have learned to ask for what we need, and we are receiving. We have sought supports that are whole and able. Orien Rose is channeling her energy into the things she is able to do right now (drawing, painting, walking, etc..), and though there is longing for her other activities (horseback riding, Tae Kwon Do, gymnastics, etc..) she is doing so well and the work is amazing. As long as our focus remains true, and does not take on too much baggage (from us), paths remain very clear! It is refreshing.

There is some sadness we feel (it seems to be the time of year to reflect), some pain at those who have decided to retreat from us, but we understand that is the way of attrition. We also understand this says more about them than us (yes, there is me trying to disown my suffering, Steven…I am paying attention). There are people who have been here the whole time, those that have come and gone and come again, and those that have just gone. It is the way with major life changes, is what I have learned. Please, Ed and I hadn’t seen each other in ten years, since mine and Orien’s wedding day. Now, he is a pretty prominent figure in our healing. I know there are others I will probably not ever see again. Some, I don’t want to.

However, since good reflecting requires both sides of the coin, I have to say, we spend more time on the other side. Mostly, we are focused on those who continue to show up, long after the adrenaline of crisis is over. We are focused on those who continue to tell us their stories and who share in our healing. It amazes me when I think about the time span. It hasn’t been that long since the accident itself. It hasn’t been that long since a major shift, a major ripple was sent out from our lives and we are doing so much! We are working, though living a little more humbly (which has been a delight). Creditors are calling, we have downgraded our luxuries, and all through this, faith is there to say, “we will be okay…no, we ARE okay.” We have what is important.

Which brings me to you, all of you who continue to read and send energy, those of you (especially) who make yourselves known. Don’t doubt that we feel it. We know you are helping us still. When you email or call, or get in contact with us in some way, in re-energizes us. When you stop us at a festival, ritual, in a doctor’s office, on the street and tell us how our lives have affected yours, we are more grateful of the reminder than you can know. It reminds us of ourselves, it brings us back into ourselves (and out of the “have to do” moments) and allows us to heal a little bit more. We can take a breath, deeply in, and exhale slowly during those moments we meet you, over and over again.

The balance is allowing for a shift, and boy does that feel good! To be able to give and not just receive (though learning to receive was really important through all of this, and is still quite a lesson). Today, we will give back by offering two women options and safety. One woman who has been a part of our lives for many years and another we haven’t met yet.

Thank you for reminding us we have something to offer! Yet again!!

I want to wish you all a very Happy New Year! At this time of the year, it is customary to give bread or fuel for the fire. It is customary to make proclamations! So, here is my fuel and bread for you (and print this and burn it if you want to), here is my proclamation for you:

Because we have been given so much, I will receive with gratitude
Because you reminded me of that I have something to give, I will give with ease
Because you have told me your stories, I will listen with my heart
Because you have reached out your hand, I will reach for the next one

I will stay strong in my faith that all things will work out and my challenges will be met, my family will be provided for, and we will retain our power to see what is most important.

Thank you!

12-10-07

2007-12-20T09:32:00.000-08:00

12-20-08

At 2pm today, I got to pick up Orien from work so we can go to Orien Rose’s school to talk with the school psychologist about her last set of test scores. For the past few months, Orien Rose has been going back through the battery of academic testing to determine where she is at right now. Some of the tests are not new to her, but this set included tests she has not seen before.
I loves numbers and patterns, so this part of the process excites me. It is concrete, I can see it. Does it mean anything? Who knows? I know that there are always things to consider when looking at the numbers, but the patterns are what really intrigue me.
Orien Rose liked doing the testing. She would talk about when she had to go to the psychologist’s office and is sad that she will not be doing so anymore. Orien Rose is inquisitive, creative and likes new things. She is powerful that way. If it is something she enjoys, she can do it forever.
Which, I am glad to say, I am finding Orien Rose is bed more often now, with a book and markers drawing more and more detailed pictures. We were concerned, as things started coming back, that her art might suffer the blow of her accident. Now, she is identifying with Frida Kahlo and her accident. Now, Orien Rose sees her artwork as a vehicle, not just something that feels good. She is making inferences that often blow me away. Perhaps I am unintelligent in these ways, or (more likely) Orien Rose is sophisticated.
We went to the doctor last week after the last month of anti-biotics. The neurosurgeon just kept saying what a miracle she is. “Look at her, “he says. “She is there.” In speaking with ID and Neuro, it was agreed that Orien Rose would come off the anti-biotics for the month and she how she does. I had expressed (and I don’t think that the ID doctor took much account, though the Neuro Resident did) that I wanted her off the anti-biotics, that it was working against her now. So, in the end, we were all in agreement anyway.
The goal, for this month, is to get Orien Rose’s head to close up. When we arrived at the doctor’s office, Orien Rose’s head was moist and open, looking as it did the month before. The neurosurgeon said to come back in a month, and if her head was closed, we would start the clock. However, he feels as if the surgery won’t happen until the Summer. That is not acceptable to me (lol), so I told him her head would be closed by the next visit at the end of January.
Since taking Orien Rose off of the antibiotics, her head has begun to scab, to turn red with blood, to oxygenate. Her head has begun to heal over, with minor setbacks as the scab sometimes gets moved by her prodding. But, it is a scab, not just moist skin! This is what we want! It WILL be closed by the end of January and we WILL show up at the appointment ready to begin the countdown to full skull!
I find myself jumping around a lot in my thoughts (which tells me I am getting back to normal). However, I do want to talk about our Story. I am amazed at how this has touched so many people. I am amazed as I watch my daughter walking through the isles of the toy store to buy her aunt and uncle a present. I am amazed that this came from your support.
So many people have reached out their hands to us, and that is our Holiday Gift. I am reminded of this on a daily basis. I am reminded to keep it simple and be grateful for the abundance of Love that we have been given.
Orien Rose is a “good girl.” She is more than that. She is strong and powerful, she is willful and a survivor. I find myself contending with an idea of Santa Claus that we did not put in her head, and I find myself angry at the message she has been given about Christmas. I hear her saying things like, “I hope I get ____ for Christmas, I was a good girl,” and I cringe.
I remember the Solstice Orien and I celebrated just before I got pregnant, where we decorated a tree outside with cranberries and popcorn for the birds and we drummed until the Sun went down, honoring the longest night of the year. I knew that I wanted things to be good for my future children, I wanted to raise them, her, to know that it is about the turning of the wheel. I wanted her to honor the birth of our God, to honor the labor the Goddess went through. I wanted her to understand that now is the time for the Mother to retreat to take care of her child, for the Holly King to retire to the Oak King’s reign. It is the time when we are reminded that the Light will return! That the Earth will be green again, and that new life will be borne.
I didn’t want her worth to be based on the amount of presents she got under the tree. I didn’t want the gauge of her behavior to be based on this concept. I can’t provide that for her. I will do my best, but according to that barometer, Orien Rose will not get the Christmas morning due her strength. I have cried the past few days over this, I have gotten angry, and I have searched deep down for solutions.
There are things Orien and I need to take care of; finances that need to be cleared up and straightened out and work through. I keep pushing forward, getting inspired by my business, my education, his strength and skill. I keep praying for clarity, for the solution, for the next right thing to show itself. I know this requires change, and I am willing! I knew it once, and Orien Rose has reminded me so clearly about it.
As I work my body out everyday, I am learning to be gentle with myself. I keep telling myself that it is the simplicity that matters most. It is the stability and strength of facing our fears, and confronting those that mean something to us. It is the gathering of family and friends, the forgiveness of past mistakes and the warmth of a good cup of hot chocolate shared that tells us our worth. Not the amount of packages under the tree!
Thank you for being a part of that!

12-10-07

2007-12-10T07:29:00.001-08:00

12-10-07

I am sitting in bed, in my favorite spot, looking out the window at the ice-coated trees, and I was thinking of all of you. I was thinking that I would like to send you all a holiday card, a thank you, a wish for a good new year. Then I was thinking of the people we continue to meet as we raise our heads to breathe fresh air as if coming out of our fish bowl of healing. And I wonder if I could even get it together in time.
I have the paper, the envelopes and the address labels, all with beautiful snowflake designs. I have the story in my head of what I would write, and even a picture I might include. Where I come up short is all the addresses. There was a notebook, you see, not as in the movie, but one that had addresses from the beginning of our hospital stay. I cannot find it. I have looked through all the bags I have yet to go through (and there are quite a few of them) and the piles of mail I am slowly sorting, and I cannot find it. It had many addresses in it. If you are interested in being on our paper mailing list for the Holiday card, please send me your addresses by emailing moonbeams4moonfinder@yahoo.com with the heading HOLIDAY CARD ADDRESS
It seems that there are items, books, cards, that have just gone missing as if the gift of healing was given and dissipated as needed. I am troubled by this, but I understand. I feel responsible, but I can’t beat myself to pieces trying too hard. So, I use the outlet I do have, and that is to write to you all.
As you have heard me speak of, we are still on the “thank you” tour. We are still meeting people that have given us the gift of prayer and thought and healing. I walk into the chiropractic office to meet an amazing woman with a generous heart who tells me of the thoughts she has had for us and Orien Rose. I meet another woman in the same office who says, “are you so and so’s friends? This is your little girl. We continue to pray for you every day! You are amazing.” I meet others that tell of our strength and speak in tribute of our parenting and I return with, “thank you! We can’t do it without community! You are who keeps us strong.”
Friday night was my sister’s wedding, and it was so beautifully cold and snowy. Our bodies, our dresses, fit in with the holiday spirit. Orien officiated (for the first time without me, but he did so wonderfully). The ceremony was sweet and short and spoke of the community we are so fond of. The vows were clean, crisp, clear. They were easily understood by all who attended, especially the part where they vowed to walk side by side in a partnership. Its lessons were not lost on me.
When I stepped outside of the bridal room, I saw one of my mother’s old friends, and she stood up and gave me the biggest hug she could. We walked outside to enjoy the crisp air and she told me of her own reactions, her own journey impacted by Orien Rose’s accident. She then spoke of her mother, living in Ireland, right outside of Belfast, and the prayer work that went down there for us.
In the middle of this, another man walked outside, another friend of the family’s, another person I remember with a fond heart as he dressed up, clown style, and entertained us (when we were younger). He spoke of being at the beach on the day of the party for Orien Rose, wanting to be with us, he collected some shells. Orien Rose had brought those shells into me not 20 minutes earlier and told me they were a gift. He wanted his hug, too. And gladly I gave it.
He also spoke of checking the blog every day to see if I had written, and then he told me the last date I had written. I realized I may have been neglecting you all, but then in another breath realized that we are getting life back together. The woman with us made a great comment, to the effect of, “when the writing stops, that means things are getting better.” I have to agree, but I also don’t want to neglect. So, I am putting it out there now. The book, the one that so many have told me to write, is in the works. If anyone out there knows a good route to go, a good publisher to seek, please, share. J
Orien and I are staying strong in our relationship, realizing that this could have gone a couple of ways. It was very clear from the beginning that we had no choice but to put aside our crap and play to the strengths we both have. As life gets normalized and daily routine sets in, it becomes a conscious effort, however. We are careful to monitor our own exhaustion and look forward to when we can simplify even more.
I have left my day job (which was supposed to only be for a year anyway so I could then start my internship) to stay home, to try and get the house organized, and to run my business. I have succeeded in burning myself out, then doing nothing, and hopefully, finally, reaching a point where I can balance home, work and school. For me, I work a few hours during the day on my business, a few hours on the house, and an hour or so on me. The majority of my work hours are on the weekends, when I go out to people’s homes.
My goals, right now, are to douche the house of unnecessary things, to not bring in anymore unless an equal or greater amount leaves. To organize the paperwork and Orien Rose’s bedroom, to make good decisions about money spending. My goals are also to grow my business even more, to support my team so they succeed. My goals include finishing my degree (which was pushed back about a year and is a struggle to keep going right now) and start my internship next year. I can’t think much past the next semester, or I feel as if I just want to stop for one.
Orien has decided not to teach sign language at the college next semester, so he will be home every evening (except Tuesdays when he is out to take care of himself). He is putting the energy into Orange County (he was teaching in Sullivan and Ulster). My hope for him is to take the time to recoup. He went right back into working two jobs once September came, not allowing for any time at home for him. I also hope he gets more connected to our home.
Magically, we have started work on not only strengthening our family, but our home, the four walls we live in, as well. With all the healing energy being sent our way, there was a back lash of things that decided to break (hot water heater, furnace, AC, cars, etc..). We have been working diligently to bring the balance back without taking away from Orien Rose’s healing.
So, since most of you read to find out how she is doing, let me finally get to her. J Orien Rose is fantastic, she is strong. She is wise and creative. She goes to MOMA and as Orien is trying to explain to her why she can’t touch the exhibits, she takes it in deeply. She listens to him as he points to all the people below them in the museum. She listens as he says to her, “what would happen if all those people touch the exhibits? What would happen to the art?” I get what he is trying to say. So does she. She turns to him, though, and says, “But there is dead fruit on these trees, Papa.” I then realize that an old friend, Bob Amery, and she would have gotten on so well! He was fantastic with his art, including the kids, working as a Shiva, creating his work, destroying it with passion with the aid of the children, and then piecing it back together in partnership with them! She has always been drawn to the piece he gave me for my graduation so many years ago. I should have known he would make his presence known again! I am saddened for a moment, as I think about his passion. I am saddened for my world that misses him.
Orien Rose is showing us everyday what it means to be strong. She is faced with social pressure, being in third grade now, and is struggling with acceptance. She has a keen sense of fairness, and doesn’t like it when things are unjust. She says that she plays a lot by herself in school, that she doesn’t think the others kids like her and the she is lonely a lot. She has been internalizing things as well. For example, two weeks ago, Orien Rose was supposed to stay after school for tutoring. She was put on the bus instead. So, she found herself on her bus, remembering just before she got home that she wasn’t supposed to get on the bus. When the bus got to our stop, no one was there to meet it, as I was on my way to her school to pick her up. When I got the call, turned around and finally got home, she was crying and upset. She apologized profusely and told me that she thought I would be mad at her.
Of course, I wasn’t mad at her. It was not her fault. However, for the rest of the night she said things like, “I’m so stupid. I am a bad kid. I just want to be a good student.” For me, Orien Rose is the best student I know. She studies life, she works through her struggles, she is compassionate and understanding. She is empathic and empathetic. Those words coming from her mouth seemed foreign to me.
When we talked about the kids at school, she said she doesn’t feel like she fits in and is afraid they will treat her different because of her helmet and she didn’t want them to. I asked her how she thought they would treat her different. She said, “at lunch, there is a girl’s table and only girl’s can sit at it, but they let ____ sit there because he has crutches. I don’t think that’s fair. He shouldn’t be able to sit there just because he has crutches. They shouldn’t treat him any differently than the other boys who can’t sit there.” She was adamant about this. So I said, “ Do you sit at the girl’s table?” She looked at me with “that look” and said, “No, all they do is talk, talk, talk, talk, talk!” While telling me this, she is moving her hand in a gabby motion to show me.
So I said, “Where do you sit?” She said, “The boys table. They eat…and talk a little.”
Orien Rose is powerful and strong and threatening to some I am sure. Whatever the language, those who have positive thought and energies tend to get it. Those who are scared, who can’t deal with different, who shy away from conflict or trauma don’t stay too long. Orien Rose breaks my heart when I see her sad, or when I see her internalize other people’s issues, but I know she is strong. We give her lots of love, and we are maintained by all of you who keep supporting us.
In order to heal the way we need to, we have needed to simplify. The money coming in is managed and maximized, but we have better hours. School is a priority so I meet the deadline and won’t need to take an extra four classes. Our house is full, so we donate more (I have put at least three bags of clothes in the past month into a bin). There is food in the refrigerator and we eat out less. This process is a learning experience in itself, but once we get to another point, once I get to another point of simplicity, it feels so clean, so good, so healing. Thank you!!

11-23-07

2007-11-23T06:03:00.000-08:00

11-23-07

We are at the “Cottage” in Rhode Island, which shares a different feeling for each of us, I am sure. The day of Thanksgiving has passed, but we are no where near done being thankful. For us, everyday is a thanksgiving.

Being here, I know that Orien Rose is getting back into her body, as she is not questioning so much here. She is doing what she used to do: taking her time upstairs, drawing, visiting the beach, visiting with us every once in a while. It looks to me as if she has such a similar connection to this place as her father does, perhaps even deeper. That is helping in her healing. She is connected to this place by ancestry, by their blood and hers, both in her conception (she was conceived here), and the spilling of her blood (not only the accident, but her placenta was buried in the River). The water has surrounded her being since time for her began.

I can imagine Orien here as a child, running the length of the beach below, finding treasures. I can see him, silent, sitting and contemplating his pain, and moving on quickly because there was too much to discover. I can see him climbing “Pirate Rock” and scraping his hands on the barnacles, stamping him a true pirate. His little legs would carry him until exhaustion was inevitable, and then his legs would grow longer and he could explore some more. I see that in Orien Rose. It is a good place, here.

I do find myself in a struggle with Orien here for down time. This has always been the way, as I get it too. It is a place to relax, to forget troubles, or just wash them away in the River, allowing the salt to cleanse them. But we have found our ebb and flow of relaxation and responsibility (or at least something of one after almost 10 years).

It is hard for me to remember what I wrote last time (and yes, I could go back and read it, but that would not smooth my flow any). Since the last time I wrote to you all I do know, though, that good things have happened. Orien Rose’s bus situation has changed and she has gotten a permanent “shadow.” These two things have decreased her anxiety so much so that she is not putting things in her mouth. She is not coming home crying or screaming. She is coming home to tell me that she likes school again.

Having just had the parent teacher conference, I have to say I was not surprised by much. Orien Rose’s “scores” are all over the place as she re-acclimates to her body and her brain heals. However, she is going to the nurse and bathroom less, as she can ask to go for a walk with her shadow. I love that, “a walk with her shadow.” The first time that came out of my thoughts, I had to delve deeper. I had to think on that some more, to think what it would be like to take a walk with my shadow. I am not talking about Peter Pan, here. I am talking about going deep inside, addressing the Moon of me. Orien Rose does this well.

Every day, when Orien Rose gets home, I ask her how school was and she says, “What do you think?” I say, “I think that you took three naps, ate green jello, and met a walrus,” or something of the sort. She laughs and the door is open for her to tell me what really happened. Generally, she talks about all the teachers she works with. Recently, she has talked a lot about China. She is loving Social Studies.

Socially, I think she is a little awkward right now, as she is, like a typical third grader, trying to find her place. From what I understand, and the reports I have gotten, the children are being kind to her, but they don’t necessarily like her. She is overcompensating and trying to imitate what she sees. She does have a few good friends in class (whom I had the pleasure to meet last weekend at her birthday party), though.

So, we talked about it. The example given is that she wants to make people laugh. So, if someone makes people laugh, she copies them, but doesn’t get the same response. So she repeats it. As we all know, this can get annoying. So, we talked about how to make people laugh. She said, “Mommy, what do you do to make people laugh?” I said, “I talk about Papa farting in Best Buy (a private joke we all share).” She laughed. Then I said, “Actually, I say funny things, make funny faces, read people to see how they are feeling and work with that. It depends on the person and what they react to. Making people laugh is an art form.” She says, “You mean a Fart Form?” So, I laugh. She got it!

Her test scores are increasing, and I am interested to see how her academic testing for her classification goes as far as any learning challenges. For now, on a daily basis, we walk (sometimes crawl) our way through the school stuff. She is getting better about doing work independently at home, at least with math. She is grasping new math concepts and we are working to bring back her love of writing again (she saw the Fly Fusion pen and is really interested, so we are contemplating it). She works on a computer now at school (or will be soon) and that also seems to alleviate some of the stress of writing. We were afraid her art work wouldn’t come back and it has blasted us out of the water, I know that her love of writing stories will come back too!

The medical aspect of this all is showing some light, too. We had our last appointment in the beginning of November. At this appointment, Orien Rose got to show off her head (and her new head of hair). Both ID and Neuro were looking to make sure the spot on the top of her head was healing. Both agreed that one more month of oral antibiotics was a good idea. Once the oral antibiotics were done, we can begin a three month clock to the next surgery.

For one week prior to the appointment, Orien Rose did not touch her head and it started to crust over. It looked good when we got there. Somewhere between Rhode Island and NY (probably in the car), she rubbed it raw again! She made it to the appointment, and for that I am proud of her. So, we just took a deep breath and started again. So far so good (though we don’t like to draw attention to it) for the time being. Our next appointment is December 12th. This will determine our next course of action.

Orien Rose is ready to have her skull in place again. She is talking about Tae Kwon Do and Horseback riding. She is talking about playing outside and riding her bike. She is talking about our cruise in 2009 and being able to climb the rock wall. She is physically stressed. She wants to move, to explore, to be on the run. Her aid in school helps with this as they get to take walks during the day to release some of that energy. For now, she is deep in art, using that energy to create drawings, paintings and sculptures. She learned how to do knot work the other day to make a bracelet. She is exploring other physical activities that do not require much all body movement. She is doing well. She is understanding.

Sometimes, I find myself frustrated for her and for us. It is then that I step back, feel my body and ask myself if I am getting frustrated because my needs are conflicting with hers. Most often, the source of frustration is that. So I take another deep breath and I determine whether my need at the moment can wait. It has become a neat little trick for me. Most of the time, I can do this and most of the time, my need can wait. However, not forever, so I explain it like this: “Okay, we (you) will do this now, but in about 20 minutes Mommy needs to _____.” She seems to do well with it. If it is a need that has to be met right away (for me), like if I have to pee, then it goes like this: “Mommy needs to ______, and in about 10 minutes you will have my undivided attention.”

Sometimes her needs are so glaring, so in my face, that I get caught off guard. It is then, that I really have to get back into my body (and out of shock) and work quickly. These are generally my opportunities to help her (and me) heal the most. These are the times when there is a lesson for both of us. At these moments, it is hard to get her to focus, to be still, to even see that I am there, but we get through it. We work through it together, as I struggle to find the connection. Once we do, we are golden, on our way to leap and a bound of health.

Moving towards health is a priority for all of us. I can’t speak for Orien, but I can for me. I have gone back into therapy and started some body work on a regular basis. I need a kick in the butt to get me to center right now. I have left my day job to take care of my household and to increase my success in my company, and I find myself trying to do six months worth of work in days. My first week off, I found myself working from the moment I got up, to the moment I went to bed. And even then, the ideas were infiltrating my dreams. This past week has been about moving more towards balance, without having to go to the opposite extreme (where I do absolutely nothing). I struggle with keeping a decent balance without the guilt of taking care of myself. I find myself “shoulding” on myself a lot and interpreting looks from my family to mean they don’t believe I am doing enough.

So, my house is still a mess, but slowly getting organized. I could really use one of those “organization” shows…lol. I have half the kitchen table cleaned off (I think I left it that way) and my chair in my room is empty of clutter. The laundry is still piled up (even though I do about two loads a day), but my living room is coming together. So, it will happen, I know. It will just take some time, as six months have passed without any real maintenance. It is in these moments that I think about all that you have done for us and I know that we will be okay and beating myself up is counterproductive to healing. So I turn myself around and envision my house as comfortable, and the mess doesn’t matter (for now…lol…). It allows me to look at one or two things, rather than the whole of it.

All the while, I have felt more accomplished in my business, booking more parties and talking to more people about healthy sexuality. I did a health and wellness expo, and got such a great response. People were really receptive to having a sex-positive experience, a holistic outlook on their needs, that I realized that I am needed! We are needed!!

I ran a group in my counseling class last week that I was proud of. It was a psycho-educational group for parents to learn how to talk to their children about sex. The group presented with all different situations, and differing age groups. The group lasted an hour and fifteen minutes and the analyzing lasted another hour or so. We got some great feedback and brainstormed possibilities for similar groups. I was so happy with it, and my co-leader, that is inspired me to start writing my classes again! It made me feel some passion about school again. There is actually a small piece of me, now, looking forward to next semester.

On the “bigger” Orien front, he is loving his job right now (that is what he tells me). He likes what he does and where he is working. It is a fantastic schedule and we get about an hour for us before Orien Rose gets home. I am always amazed at what a great interpreter he is, at what he has to offer. I could watch him forever, signing. His movement is smooth, confident. He is powerful in his body when he is signing. Though he is still teaching college, he will not teach next semester. Like all of us, he tried to get back into what seemed normal very quickly, too soon. He didn’t get much time to be. So he will take next semester off and see what happens from there. As well, I will be in class two nights next semester, so he will be with Orien Rose and we will have more family time.

Since I have written quite a bit, this brings me to the end of the update for now. I do have to say, please encourage me to write if you are curious. Since I am trying to do a mountain of things all at once, sometimes my writing gets pushed aside (though I did just set up a stag ink well and pen on my window altar to remind me) and I need a reminder. So feel free to say, “hey, where’s the next update?” We have not forgotten you all, though I know the updates are coming slower now. We are adjusting, we are trying to get into ourselves. I don’t want to say we are trying to get back to normal, because normal is different now. How can it not be? I have found pieces of myself that have gotten buried over the years. I find myself not only speaking the positives, but feeling them as well.

So, thank you all who continue to pray and do work for us. Thank you to those of you who continue to think about us. We are healing, all of us, because of you. As I walk through each day, if I find myself feeling disconnected, I bring you to mind and I am okay. As I meet some of you who I have not known before, I know that we are loved. I am grateful for the people we have reconnected with and for those we are newly connecting with. If a moment seems hard, we draw on the strength you have sent us and we remember the positives. We use the laws of Attraction and we bring abundance, because we are worthy of receiving. We use the laws of Karma and we send abundance, because we are worthy of giving. You have solidified that for us!

11-4-07

2007-11-04T05:59:00.000-08:00

11-4-07

I have done it. I have resigned from my day job to take care of Orien Rose. We were not sure how Orien Rose would be in school, so when we started this school year we kept our minds open. Orien Rose is loving school, most days, but feeling really restricted physically. This, for her, is such a big deal, as Orien Rose is a mover. It is hard to tell what is going on in her head, but she is letting us in more and more each day.

Orien Rose, a few weeks back, let herself out for recess. She told her school that we said she can go outside now. We are not sure if she is holding onto the six month time limit we had in the beginning of this whole journey, or if one of the monitors generically said, “see ya on the playground.” Either way, her brain is working differently.

Orien Rose knows that she is different from before. Where she could take 15 minutes of her after school time to do her homework, it is now taking her three hours. Where she could wiz through writing a story (and she loved writing them) she doesn’t want to write three sentences now. She can still tell a story like no one else I know, but she doesn’t want to write it down. I miss her stories, with her intricate pictures. I miss her enthusiasm for sharing them.

We had our second meeting with the CSE since last I wrote to you all. I had a list of concerns I wanted to discuss when I walked in the door, but I have to say the chair was on it before I could even say it. After the first few people spoke (speech, resource and teacher) our biggest concern was evident. Orien Rose is stressed. Before I could say that keeping her level of stress to a minimum was our biggest goal, it slid out of the mouth of the chair of the committee. I was relieved.

The meeting took almost two hours, as twelve people sat around that table. Orien Rose’s teacher from last year was there to say, “yes, Orien needed to be re-directed occasionally, but she would work independently. No, this is not the same kid as last year.” There was some relief in that, but also some sadness. In this meeting we learned that not only was Orien Rose putting things in her mouth (which we have discussed with her teacher, counselor, each other…) but she was swallowing them now, too. Something I wish I had known a little earlier than that moment.

We also got to see a drawing she did of herself, where her head was not there. It was just not there. Her body was proportionate, her hands, legs, feet…but her head did not make it onto the paper. The drawing was done on the top of the paper, so we saw the bottom of a circle that would be a head and then the rest of the body. As a former student of art therapy, and obviously as a parent, this is the clearest statement of how Orien Rose is seeing things right now. I am glad that school is on the same page with it. It is clear, from everything that happened at the meeting, that Orien Rose’s behaviors are consistent (at home and at school).

I am a little frustrated that I do not know what is going on daily with Orien Rose. When I went in to speak with my principal about leaving, she had a good point to make. During Orien Rose’s medical stay, Orien and I were on top of everything. She was not left alone, we made decisions together, we were in control of her healing. With her education, we need to be as vigilant. Right now, this is where she is doing a lot of healing. So, when she comes home, gets off the bus, and starts screaming my heart hurts for her. My body cringes as the levels of cortisol rise in her body. This is not good for her healing. She should be encouraged to explore, to feel, to create… allowing serotonin to dominate right now. Her brain needs to heal.

So, I am staying home. I will be home to make sure the house is taken care of during the day, rather then when I would get home from a day job. This way. I am free when Orien Rose gets off the bus to walk down the dirt road with her, picking leaves from the ground, sticking them to our faces, pretending to be an autumnal Green Man. I will be home to monitor my energy, so time spent with Orien Rose is about Orien Rose. I will be home to support Orien as he arrives from his work day. I will be home to run my business more thoroughly, to work smarter, not harder (thank you Sheri-Lynn for repetitively implanting that in my brain).

Speaking of the bus, Orien Rose is now on a different bus. Each day was like playing Russian Roulette with her emotions. We never knew if she would come off crying, screaming, cursing, or if she would have waylaid the emotional torture and been okay. Now, she is on a bus with fewer children, leaves later in the morning and comes home about the same time. Now, she has a smile on her face, a new bus driver and an aid to help her!

With all of this going on, Orien Rose is in third grade, a time when social priorities are becoming more evident. She has a “best friend” now in school. She got a phone call last night from another class mate RSVPing to her party and spent a good 30 minutes on the phone talking and laughing. I overheard her talking about a boy in class she doesn’t like, and one she does. With all of this, Orien Rose is okay in a lot of ways. She is different in some ways, but so okay.

Orien Rose needs breaks. Going to the nurse ten times a day was her way of being in tune with her body. Now, we have spoken about having someone walk with her for a break (I believe this is happening now…yes, I know Debbie, be more on top of it…I am working on it). Orien Rose needs someone to sometimes write for her, so we alternate at home for homework. Orien Rose will have access to a computer program at school that will take some of that pressure off of her. I was told Wednesday they were working on it. It will take a little bit to get it set up.

As we go along, we learn what she needs. We learn what is frustrating her. Orien Rose begins her testing next week to determine any learning disabilities. From there, we move from a 504 to an IEP. From there, we decide what the next best thing is for her healing. Who knows how Orien Rose has changed, who knows what is going to heal. I know that she is different, but how different. I also know that she is one of the most amazingly strong individuals I have ever met in my life and I am blessed to be her mother. I know that she has already fought death and won. I know she made a decision to live, to stay with us. One day, she will realize this too.

I know that we are good parents and that she was open to our help. I know that she was open to the healing you have all sent her way and continue to send. She is not done. We are not done, and each time I meet a new person who was affected by our story, my heart grows bigger, my faith gets stronger that we can do this together. Each time we get a call asking for help, I know that what you have sent us, we can send others. In many ways we are still raw, trying to heal while life tries to take a normal course. Life will not be the same for us, nor for many others. This is so much bigger than us! Life has been turned upside down, and in some ways, has turned right side up.

We sat in an office the other day, doing an intake at a child play therapy center for Orien Rose. A paper had come across my desk at work, and I decided to check out the place as a possible outlet for Orien Rose to process that was fairly close to home. I liked this place as they will not pry into the accident, but rather deal with the emotions now. As we sat there talking, this person realized he knew of us (even before the accident). Did that seem strange, he wanted to know. Not in our life, we told him. Then he realized the accident we were talking about and he said, “do you realize how many people this has affected?” Apparently a whole lot more than we thought, as he knew my sister’s name and went on to tell us that he has talked with people about it, people who have been affected by it.

Each day, I have a small reminder of how big this is. Sometimes, that reminder is large as I meet the people who have prayed for us. It is so good to be able to shake your hand or to give you a hug. It is so good to see you smile as you watch Orien Rose bend down to play with something, or when she tells you a story.

Sometimes, I see people in my life who didn’t even know why I disappeared, and it is kind of refreshing to tell the story from where we stand now. And then their energy joins that of so many others in our healing, and we feel it renewed. So thank you all for continuing to tell our story, for your continued work and thoughts and prayers. We are constantly thinking of you, though communications have been more spread out. We are living the life that you helped to save.

Thank you for the magic that still comes in (yes, we just received your stone from Texas!! The energy is great!!) on a daily basis to us. We are doing what we can to make it grow. We are cleaning house of the things that restrict our beauty and healing. You help us each day to be strong!

So here is my blessing for you: May you find the strength to stand tall in who you are, accepting you are human and forgiving yourself easily. May you grow in beauty and health each day as you salute a new Sun. May each morning’s first conscious breath be a reminder of what you have to offer and what you have given of yourself. And may it return to you renewed.

10-18-07

2007-10-18T19:42:00.000-07:00

10-18-07

I have been procrastinating with writing. It is not that I have not wanted to, I have. However, I have been struggling with letting loose, and staying reserved due to politeness, correctness, perceived realties, etc…you know, the stuff that makes writers think twice about doing what they love to do.

I have been contemplating all of you and the process that we, Orien, Orien Rose and I, have been through. I have been thinking about the massive amounts of energy you have all sent and what that has done to us and for us, about what that has done to our communities as a whole. I feel is waning, as I am told is natural, and I don’t want it to. I want to feel this connected for a long time. I do not want to let go of the beauty I have been shown in the wake of a miraculous tragedy.

Slowly, I have been making my way through the thank yous. I have a list a mile long, that reminds me, when I look at it, how blessed we are. Slowly, just as all things are moving in my life right now, I am getting to say what I need to say to you each individually. This has been part of my lack of writing to you collectively.

We have also been enjoying, for a balance of sorts, some blessings in our lives. My mother, after years of donating her money to a charity raffle, finally won a Harley Davidson. I couldn’t believe it! What a pendulum swing in the opposite direction from where we have been hit hard. What a blessing so deserved, as one thing after another has challenged us as a family.

Some have commented negatively on this, thinking she should give it up, sell it and donate it to us. I don’t understand this line of thinking. I think it is a good sign, a sign that we deserve to have some grace in our lives. I am grateful to those who have donated, who have helped us to heal our daughter, who have lessened our burden and stress. Those who donated time, money, caring, companionship, we accept those things with open hearts and intentions. Our intention is to heal Orien Rose. You have all made that process manageable!

I would like to fill you in about the last three weeks or so, to let you into our world again. I cannot fill you in on every detail, as most have slipped by me. We have routined our days with work and school. We have attempted to bring some normalcy back into our lives, our normalcy of drum circles, rituals, conferences, workshops, friends on the lawn, travel for fun. Amidst that, life is creeping in. More responsibility beckons around every corner as we put our feet back into the daily grind of mailbox checking and check writing.

Our world is no longer crumbling, though, like a sandcastle holding its breath as the waves crest near. The sound of water, not so distant, no longer threatens our dreams each night. Though there are visitations, there has been room for other dreams.

Orien and I hold each other again at night. We curl into each other, as Orien Rose sleeps soundly in her own bed after 6 weeks of intravenous antibiotics. Yes folks, the central line has come out, the infection diminished. Orien Rose’s head is still open slightly. She rubs and itches, unaware she is doing so, keeping a fresh connection to her body that feels foreign to her.

Orien Rose is struggling right now. She is emotional. Academically, she feels she is stupid and can’t keep up. She puts her head down on the table, and the tears come out as she tells me she knows the teacher went over the work, but she can’t remember. Today, she got so frustrated by her restrictions, she told the school that we (Orien and I) told her she can go out for recess…then she let herself out. We did no such thing, and when confronted, she said she thought we did.

Orien Rose’s organization skills are almost non-existent as she flits from one thing to the next, exploring as a small child experiencing for the first time would. She is distracted by shiny things, moving from place to place and forgetting about something moments after she has discovered it. In a way, it is beautiful to see her do this, it has awakened a curiosity in me, but more so, I can see her frustrated mind at work trying to figure it out.

We are nearing 5 months since the accident happened. Orien Rose has been through three surgeries and numerous procedures. She has been in and out of hospitals and doctors offices. She has had tubes in her body and out again. She has been on medications. She has been restricted in her movement, and only recently could take a full out bath. Orien Rose has given more blood in this short time than I have in my whole life (and I used to be a regular donor…but don’t get me started on that one again!!).

The past three weeks have seen the end of the IV antibiotics, the introduction of an oral antibiotic and more issues with school. The past three weeks have seen me away for one, attempting some rest only to come home and get sick enough to put me in the hospital and then in bed for another. I feel as if I have lost a whole week of my life, unconnected. I have contemplated over and over what needs to go in my life, what needs to be put on hold, what is priority, and I have yet to figure it out. I have family, school, work, work, work, down time, crafts, personal development, relationship introspection, groups to teach/run, spiritual work to do…

The past three weeks, Orien Rose has come off the bus, more often than not, crying and/or screaming because she feels unsafe and there are kids teasing her and taunting her. We have had long discussions about these children. Orien Rose is super compassionate and says, “I know Mommy, they probably don’t feel so good about themselves. Maybe they are not getting what they need at home.” What she has not understood is that no matter what is going on with these kids, that doesn’t give them the right to be nasty to her. However, unlike last year when a kid on the bus kicked her in the face and she was told if it happened again to fight back (she doesn’t want to, and will let herself get kicked), it is now a life and death situation should it happen again (yes, this same kid is still on the bus…and giving her a hard time).

Orien Rose loves school, but she feels lost. I speak with her teacher fairly regularly, and it seems that Orien Rose is just not able to stay focused. I spoke with her case manager, and they are seeing about getting some more help for her to help her get organized. I am not sure what is going to work. I try to aid Orien Rose on her homework as she tears up and tells me she is stupid. I try to come up with solutions about the noise on the bus she says is bothering her, is hurting her head, but there is little that can be done on her current bus. (I tried to send her in with her mp3 player so it would lessen the noise and that didn’t go over well.) I have spoken with the bus garage, the case manager, the speech therapist, the teacher, the… I have put together months of medical records, made copies, brought them to DSS and now need to do it again. I have made appointments, as has Orien. We have a meeting at a children’s counseling center next week to talk to them. We have a CSE (Committee on Special Education) meeting next week…

…and the holidays are approaching fast, as is Orien Rose’s 9th birthday. Our plans, well intentioned, will probably not happen as we originally thought. Orien Rose’s surgery will not happen until after the New Year, and we will not travel too far away from the hospital without her skull attached. This means I need to make more phone calls to airlines to beg them to extend our date of ticket usage, or we lose out on quite a few hundred dollars in flights. I find myself sad about this, as I was looking forward to seeing family from the West Coast. Orien, Orien Rose and I could all use to see them. I don’t quite know how to explain the feeling I have over this. However, as with all of this…everything has worked out just the way is has needed to.

So, if you are out there, still reading, we do need some focused energies. Here is the picture we would like to focus on:

Orien Rose is healthy, strong and cognoscente. Orien Rose can think clearly, processing multi-stepped tasks with ease. Orien Rose will pack her backpack in the afternoon, not only with the stuff from her mailbox, but be able to figure out that because her assignment book says she must do ABC order that she will grab her spelling book as well. Orien Rose remembers to put her books where they belong, finding them just as they should be. Orien Rose feels smart and is able to write for extended periods of time. Orien Rose enjoys writing stories and can’t wait to get home to write a new one!

9-28-07

2007-09-28T04:12:00.000-07:00

9-28-07

I haven’t abandoned you all. As a matter of fact, you have all been on my mind so much lately, it has been painful. I am struggling with how to write to you to make sure that you get the information I need you to (and that you have expressed needing) without creating any repercussions elsewhere.

This has been a difficult task, as I realized my writing is fueled by your reading. That it is an intricate dance back and forth. This is not the writing of my childhood, where I expelled all that hurt me so I could live, this is writing so that we can heal. All of us. This is a shared endeavor.

I have heard your stories, too. You have been gracious enough to share them with me. They have kept me going, kept me connected to something so much bigger than myself, something so much bigger than the unit we are in this house.

Orien and I are doing okay. We are not great, we are not even good most of the time, but we are okay. We are tired, but this leg of the journey is almost over. Three IV treatments a day, little sleep, school (for all of us), work…it is a lot to do. We are finding joy in the little moments. Orien and I are sharing our enjoyment of work, he now working for the same organization during the day.

I find we can be brutally raw in our emotions, but equally forgiving. I have expressed my emotions more so than ever before in my relationship with Orien, and man does it feel good not to have to weigh everything I am going to do or say, but to just be in my skin. I am more me than I have been in a long time.

Orien Rose…she is adjusting to school slowly. She is getting frustrated at the pace. She is smart. There is no doubt of her intelligence, but her stamina is not there, her focus is not there right now. She gets home from school, we do her treatment and she does her homework. After that, she takes a break with a snack and a little TV while I am searching online for more work to mimic the work she brought home. We are learning new studying strategies together. After her break, she comes back to the table where we start on more work, or a game on brainpop.com that correlates. Then we do puzzles, read or play card games. Right now, we are keeping television to a minimum and doing what we can to stimulate the neurons.

Yesterday was four months since the accident. In looking at the picture in totality, she is amazing! We are amazing.

So, folks, this one was short, but I wanted to let you in. I wanted to be embraced by your thoughts before I leave for a week. Yes, I am leaving for a week to take care of myself. Orien will do so shortly afterwards. We are hurting, but we know how to take care of ourselves…with your help, we can keep going! You are all loved.

9-18-07

2007-09-18T13:04:00.000-07:00

9-18-07

I started writing some yesterday, but did not send it out. I find myself, after some happenings at my day job, wondering if I can be true to my writing, and my healing process through writing because of it. I am disturbed by this. I don’t quite know how to bridge this dilemma, keeping a positive outlook on what writing does for me, and how that can affect me because of who reads it. I will leave what I feel about it out of this arena (and perhaps save it for my book? Yes, all of you who tell me over and over, I am thinking hard on it). So, I will try to give to you what I can as I write today, rather than inundating you with yesterday’s ramblings that really served to get out some of my confusion.

Some of yesterday’s process really brought it home that the writing I have done has served to send positive energy to us. That if I spoke to you about the hope we felt, you felt hope for us, and it returned to us. If I spoke of the pain, you felt pain for us, and took some of it for us. We can feel it on this end. I realized in writing a book, I would address the pain, the suffering, the struggles, the conflicts, as well as the joy, hope and strength. I am not saying, by any means there is not strength in struggle. I am a true believer in things making us stronger as we grow through them, but I am talking about a magical process, an energy process. Writing about hope allows me to feel it more, too.

I thought about all I have written so far, how I may or may not have balanced both the pain and joy…or maybe I did? I thought about how much you have all given of yourselves and how that has to return to you in abundance. I have not gone back to read what I have written, nor do I really go back to fix what has made its way onto the page. The process is changing. It is unfolding with a bigger purpose and I am loving it.

This weekend was brilliant. It was full of so much energy, and yes…some exhaustion, too. I started it after driving to RI Wednesday night, an ID visit on Thursday morning (a useless one in my opinion and VERY frustrating) and then driving back Thursday late morning to get home for Orien Rose’s treatment. I was in shock, let’s leave it at that, that after all the arrangements, there was no information for me. The doctor did not retrieve the information she received so wanted to redo some blood work. Then, I agreed, knowing I was already late, as long as “the nurse” (those of you who have been reading know what I am talking about) was not the one on duty. Well, guess who walked out to greet us! Nevertheless, I told her she was not to touch my daughter and why, took the prescription and made my way home. Orien handled the rest as he got an earful as soon as I got out of there. He is amazing.

So Friday, I went back to RI, this time with two of my Goddesses, laughing, cracking up, almost peeing my pants (man am I going to need to start working those Kegels again) as we told stories with much detail and hilarity. It was a great ride followed by a great night in a great bed with great people.

All that evening, I thought of home, of Orien and Orien Rose and how they were. All night, I got okay with having to leave work early as I am committed to Athena’s and its growth. All night, I balanced within me the need to have a little fun, do a little work and get back home to my family who needed me. I made a good compromise, I feel, leaving earlier in the weekend. Thank you to the ladies who waited for me so they could take me home!

When I arrived home, Orien was in full birthday celebration mode. Impromptu, for his birthday, friends from MD came to visit and do some tattooing. It was nice to walk into, though a shock from where I just came. It was not an easy adjustment for me, and I found myself crying a little bit in bed before I could come out and join them. That night was also not easy. I had been up all day, enjoying the Athena’s Extravaganza, driving home, then up chatting and lending energy to the work being done in my home.

I got to bed late, and needed to be up early, battling with my need to be around friends and be an adult alone with other adults (while Orien Rose slept) and the responsibility of getting her treatment done in the morning (it was my turn). I did it. I went back to sleep, and two hours later, woke up to pee in the bed. My rest was over, for the moment. She and Orien cuddled in her bed as I put the sheets in the washer. I crawled onto my side of the bed with a blanket and cried. It was not shameful, it was not a big deal, it was a cleansing that was letting me move on with my day.

Later on, once the house stirred, and just as people were arriving on Sunday, I hopped into the bath with my Heavenly Goddess bath gel. I sunk into the water, dunking my head, and felt the pull of the tides while I looked out the window to the trees. I was centering in a private spot, dreaming of an outdoor bath, knowing that one day, I could have that! I was dreaming!! Ahh…what a good feeling, how cleansing! It made the morning’s cry that much more meaningful.

Orien Rose hung around us all day, lending energy, playing with the kids. She ran across the lawn (yeah, its hard to get her to stop doing that…running), to the neighbors and played! She got wet and came right home worrying that she did. We spoke to the neighbor about it, about how it was so natural that it happened, that Orien Rose is looking and being such a kid she didn’t even think about the small swimming pool and how they were standing around it. Another good moment of thought followed by Orien Rose being very aware that she needed to get new clothes. Now, she was not soaked, only a little wet, and it was on the other side of her body, but that she was aware made me cry. It was so wonderful.

Later on that early evening, it was my turn to state my intent and get on the table. Originally, I had not planned to do any work, but in thinking about it, a picture of a compass rose kept coming to mind. I kept thinking about Orien Rose, on the boat, bleeding in the water. I kept thinking about the pain I would feel when I would think about her head being sliced open. I kept having this image that wanted to be recognized, so I went for it. I stated my intent that I still sometimes feel pregnant with her. That I don’t truly feel as if my body is my own, that she still owns it. I stated that I wanted to give her a specific piece of my body so my heart would be light for her. I put it on my right calf, symbolizing a move towards the future. It was a great evening.

It was so normal, for all of us. And that is what we thanked our friends for: for bringing some normalcy back for us, for being the conduit that had people visiting and healing and doing some deep (and some not so deep) work.

So, here we are, with some normalcy back in our lives. Here we are with a schedule that is keeping us more grounded (though differently tired). Here we are giving back, doing what we love to do as we all heal. All of us have found a space were we are comfortable during the day. Orien Rose is loving school, and she is doing okay. There will be some adjustments and her distractibility is high, but we recognize that healing takes up a lot of energy. Her school has been wonderfully accommodating and willing. We are doing what we can here with her as far as her schooling.

The money needs to be replenished, but Orien and I are both working steadily and enjoying what we are doing. Orien likes his job. I like my day job. I like that we both get home around the same time, and that with an hour together before Orien Rose gets home, we have some time to connect, or rest, or write, or be. I am still adjusting the juggle of my passions, but more and more I feel grounded, I feel like I can breath. More and more, as we settle back into normalcy, I try to be aware of love and tenderness while not denying anger and frustration. I can accept love while at the same time, not stuffing my frustration. I have forgiven myself over and over, and will do so as many times as I need to right now.

Tonight, Orien and I will leave for counseling together for the first time since Orien’s last surgery. We will go to my mother’s for her birthday and share in the joy of her birth (and the 2008 HD Road King she just won!! Holy Cow!!) We will be with family, secure, happy. I am looking forward to it.

I hope for the same for all of you, to know balance and forgiveness…to allow yourself to heal and to be open to accept love for yourself and others.

9-12-07

2007-09-12T12:41:00.001-07:00

9-12-07

I have wanted to write for a few days, but time gets by me quickly it seems. As the second week of school ensues, we all adjust to a routine. As I imagined, it is good for us, though it keeps us busy. Orien started his job, Orien Rose is meeting the people she will be working with in school, I settle into a day time routine filled with children who make me smile. I am blessed in so many ways.

I found myself, yesterday, counting my blessings. I found myself thinking how nice it would be to write to you all to tell you we are doing this. We are doing it!! I want to give you some more of the hope that I feel, rather than the venting of my angst. Through all of it, I have learned forgiveness; forgiveness of others (especially of my husband) and myself. There is more time now to think about the little things, but those are the things I need to let go. Looking at the big picture, we have done so well. We are doing so well.

I got a message from a classmate, a woman who has lived this for a long time. She has always been a woman I have looked at with curiosity, compassion, and intrigue. She messaged me not too long ago, just to touch base, to say she was reading and she was with me! How good that felt.

Though it doesn’t come up a lot at work, people ask. I give them the short answer,” she is doing okay, getting adjusted. She is in school!” They tell me I am blessed. It could have been so different. And I look at the kids around me, I look at the teachers, and realize we all have our struggles. I have been aware of this, I have known this, I want to share this. I want to drum, and sing, and teach. I want to learn along with those who I spend a good time of my day with. I want to remain teachable. I am teachable.

I am tired, yes, but feeling better every day as we continue reaching out to people. We are half way through the IV treatments. This is a lonelier time for us, as people are not there to help us consistently, and it is hard, but it is also a time that is allowing us to bond and get stronger as a family. It is a time that is testing our ability to ask for help, and we are rising to the challenge. We are doing what we can to take care of ourselves. Sometimes, that is a moment alone in the bathroom, sometimes it is a drive to our counselor (and that one I will be making next week…lol…so for all of you who offered to come sit with Orien Rose for a few hours, know we will be asking for it on Tuesday).

During this week also, I have been able to give back. I was offered the opportunity to step out of myself for a few moments when I received a call from a friend in Maryland. She said she immediately thought of us when she heard of another family in need. This family is in our area. There was a baby, badly burned, in the hospital. The family needed some support, some guidance, and she turned to us. She thought of us. Our experience is helping others. I got on the phone immediately, asked for some work to be done magically, and then spoke with Orien. He visited with them on Sunday, offering whatever peace he could.

The Universe is taking care of us. It is giving us the opportunity to give back as well as bring the people we need to us. It is challenging us to reach out in so many ways. It reminds me that I have work to do in this lifetime. I am hurting, yes…but I am healing, too.

I was home Monday night, Orien was teaching and Orien Rose was snoozing before her evening treatment. My back was hurting incredibly, though I am not sure why. Physically, I think I am healing as well, remembering old pains that need to completely leave my body this time. Some things are intensifying (please, I gained weight on a cleanse) and some are passing slowly and steadily away.

I was lying on the couch, nursing my back and feeling a little alone. I was dipping my foot into an enjoyment of that feeling, and then feeling I needed to reach out…maybe. Well…three calls came in one right after the other. I decided to just listen to the voices on the machine, to take comfort in that alone. It was a beautiful moment.

I was sad the next day, wondering how much longer I could handle this, wondering how much longer it would take to get into a solid sleep routine, but it is getting there. It seems that I do better with Orien Rose in the morning (I am definitely a morning person) and Orien does better at night. The afternoon has been split either way. So, it is smoothing out.

Mary visited for a little while that day. Dr. Ann called to say she was thinking of us and asked when I would get in their to start some chiropractic work. I got some more emails from people reaching out about the dogs, whether it was to say they could try to help, or that they couldn’t and they were sorry. It definitely was a world different yesterday than it was even the day before. Today…I leave for RI as tomorrow we have a follow up ID appointment! Please send the energy for good news and infection healing incredibly…miraculously! I will be home again tomorrow night, to start my semester with my Counseling III class! I am excited.

This weekend, I leave for a few days to go to the Athena’s EXTRAVAGANZA. I am so looking forward to the meeting and the Leadership Awards dinner and breakfast. It rejuvenates me, it keeps me inspired, pumped, moving in a good direction. I have been so inspired by the hand that has reached out to me, the big hand of the many Goddesses and Adoni of Athena’s. I am looking forward to basking in their love. I know I have many hugs waiting for me.

I also found myself looking at the trainings that BOCES offers today, excited to continue to grow and learn. I am excited to stimulate my brain and bring the best me I can. Though I am only in one class this semester, I still plan to continue my education and my ability to help others. I am not bummed about taking only one class anymore. I definitely had my mourning of my externship for the year, but I have gotten at peace with the idea of taking it one day at a time. I do not “need to finish” in a certain time period, because I am realizing it will never be finished. I will always be a student, that’s who I am. Though, I did have to have Karen review it with me yesterday, as some of the information I had changed, it wasn’t hard to keep me where I am. I am in the right place (yes, my lovely students…I even tell myself I am in the right place. So, don’t get so perturbed when I tell you, lol). We are all where we are supposed to be, including my daughter, who is healing, who is strong, who is so incredibly compassionate! I am blown away watching her as she sleeps, watching her as she writes, reads, gets frustrated, laughs…

I spoke with Orien Rose’s teacher yesterday about what has manifested so far in school. Orien Rose is having a great time, and is at ease. Her work is a little challenging and we are trying to figure out if it is distraction, endurance, inability, or a combination. Orien Rose is social, and the children are being extremely kind. They ask her questions, she answers. She talks to the teacher (sometimes when she is supposed to be doing work). She complains of a stomach ache, which could be work avoidance or from the medications she is on. She goes to the bathroom frequently, again possibly one or the other or both.

I worked with Orien Rose on her homework yesterday, then gave her some extra work. Trying to assess if she could accomplish certain tasks so I can be on the same page as her teacher, we did some extra pages I had lying around. There is struggle and frustration, but she can do it. There is distraction, and we talked about it. Orien Rose got some of it, as she tried to find words in a word search and I played a very distracting game in front of her. She understood, after we talked a bit, what I was trying to help her with. She is so pure of heart, she smiled and went on with her work.

We read later, in bed, as Orien Rose was getting ready for sleep. I read to her, she read to me. She is not reading what I want her to, but she is reading. Eventually I let that thought go and just enjoyed watching her lips move, hearing the sound come out, and looking at her eyes as they scanned the pages. Her reading is steady, fluid. She can see, she can hear! I am so blessed. She can speak, walk, write, run (though she is not supposed to), answer questions. She is golden in her skin as it shines against the burgundy pillow. She is perfect. My little baby, my flawless child with her moon shaped scar across her cheek. Her eyes glowed with flecks of yellow, searching my face to see how I was feeling. And I cried: tears of happiness, gratitude, relief this time. She asked me why I was crying, and I told her I was happy.

9-7-07

2007-09-08T07:46:00.000-07:00

9-8-07

This is the first moment I have had to do an update! This week has been CRAZY…emotionally, physically, spiritually…in every way possible. There have been many miscommunications & stresses and an equal amount of growth and joy!

Orien and I had it hard this week. We took last weekend to visit the “Cottage” attempting for relaxation. I am not sure it was the best decision for us, but we made the best of it. Sometimes, our best is not so great in a moment, but he and I are being as forgiving as possible with each other. We did have a nice lobster dinner and some good antique perusing. The weekend did hold some healing. Orien spotted a beautiful copper stag ink well for me! Holy Cow!! It is so magical, so pointing me in the direction of writing that I cried when I saw it. And I was going to walk out and be done!

Orien Rose and Abigail (and I and my mother) as well as Orien went out on the boat for the first time since the accident. Though the boat has been in the water, it seemed that we were waiting for this moment. Orien Rose was contemplative as she gazed at the water. I could see in her eyes that she was trying to figure something out, but she wasn’t quite reaching it. I could see as she stared at the motor the question about how she lived. Or perhaps, it was the awe that she did live that I saw. For the most part, she was good that we were keeping her safely inside the boat though she wanted to go faster, she wanted to move around. She was restrained, by both us and by herself. It wasn’t long before she said she wanted to go back.

Abigail seemed to be okay as well. At the beginning of the weekend, she didn’t want to go on the boat. She didn’t want to fish from the boat because she was afraid that she might get hooked. When she realized that we were going for a short ride, no fishing poles, she agreed. I think it was healing for her as well.

We made another visit to the fire department this visit, hoping to catch a few of the guys as my mother bought them some gifts. We were gifted ourselves with smiles and nods, and some hats and pencils. The rest of the gifts, for those who weren’t there, were left for them. It was good for all of us to go.

We got home late Monday night. Orien drove as I slept because I was going to start my work week Tuesday. Nervous about going back to work, knowing I am not on my game, I drove in with Kristy. Orien and I are down to one car right now, and she was gracious enough to make a detour in her trip to pick me up. Orien and Orien Rose were up later than we anticipated and I needed to be there earlier than I originally thought. We are living around her IV treatments. So, there is no way he could have dropped me off that day on time.

As for transportation, we will see how this next week works out. I got a ride in with another coworker for the rest of last week, but I think that one of us is soon going to get some really strong legs remembering how to ride a bike! J Orien starts his position on Monday. Luckily, he will be working a mile and a half from where we live and he goes in a half an hour later than me, so he can put Orien Rose on the bus.

Which brings me to the question I have been getting the most: how was Orien Rose’s first day of school? Well, when I asked her, she said, “GREAT!” Orien took her in, as the nurse wanted to speak with us about the medical questions that have presented themselves in this situation. I spoke briefly with the nurse over the phone: no running, helmet stays on at all times, Orien Rose has a dual lumen central line in her chest that will be under her clothes (and a sports bra), she has a left bone flap (no skull)…

So, Orien drove Orien Rose to school, spoke with the nurse, met the OT and speech therapist as well as the school psychologist. He brought her to the front door just before the bell rang, and let her go as soon as it did. He said a horde of kids came barreling into the school and she went right along to her classroom. He did walk up the hall afterwards to make sure she got there, and she was fine! She came home on the bus with no issue!

Orien Rose said she met a new friend, but couldn’t remember his name. She had fun in school, stayed with the guidance counselor for recess, and likes her teacher. She said the kids asked her a lot of questions. She said they kept asking her over and over if it hurt, and her reply was, “No, I was unconscious.”

Her second day was just as good, she said. I haven’t yet spoken with her teacher, though she called to check in. We were waiting (a long time) for the bus when she called, and when I called back, she was already gone. I need to write myself a million notes to remember small things like this now! Orien Rose wasn’t in school on Friday, and I guess they knew this, or Orien called, because I didn’t get a call. I hope so, or I will send a note on Monday.

Orien took Orien Rose to the neurosurgeon’s office to get her stitches removed. Luckily, they were able to do it all on Friday, and they won’t have to stay until Monday (this was a possibility if they needed to remove every other). When I spoke to him, he said it took an hour to convince her to sit still, and some healing work about pain and fear (and getting rid of what that nut of a nurse has done). Even the resident said that she has seen it before. That one bad experience can affect the rest of it. So, it took them over an hour, there was only pain with one stitch, and they took a break halfway through and then finished. So, I will see them Sunday night.

I know I am jumping around, but that is how this week has been. I watched the movie Premonition last night, and that is what I feel like. As if days are disjointed and I can’t remember what day it actually is. I know that Orien Rose was screaming in the kitchen on Thursday, and that the shipment of medication was two days late and Orien spoke with ten different people who told him ten different things. Then the nurse called to say she would be late, and another one called to say she would be there instead. And Orien Rose was screaming because the dressing needed to be changed AGAIN, because the other nurse insisted on putting on bacitracin which was loosening the dressing. And Heather was there to pick up Orien Rose to try on a dress for her wedding. And UPS messed up with my delivery and I ended up waiting for them in the parking lot for them to tell me the driver couldn’t find me in the parking lot. Then I got on the phone with my mother who wanted to revisit a conversation I couldn’t have and it didn’t go well, and she is stressed, and I am stressed and it wasn’t nice. And I wrote myself three notes to pick something up for Orien on the way home, and as I got to my driveway, I realized I forgot it.

I stopped! In my driveway…and I screamed at the top of my lungs, and I cried and I almost peed my pants it was so powerful of a body heave. I drove down the rest of the road and I parked and I sat and I cried for a moment. No, I convulsed with tears of rage, frustration and sadness. I burst open. And as I got out of the car, I told Orien I forgot and he laughed and said he would go out again, and I cried some more. And he held me.

That night, I did mindless, productive things. When he returned, I was sitting at the table, waiting for Orien Rose to get back, making my sample labels for the event I am doing on Sunday. He brought in the two sticky notes and said, “wow, you must have really been in a bad way, you had TWO notes.” And I stuck up the palm of my hand, and I said, “no, three” as I showed him the one I had written on me.

And finally, we sat, and I can’t remember if this was Wednesday, or Thursday, and we talked for a good half an hour. We talked about how lonely it has become. We talked about how we need to be strong, to re-pace ourselves, to forgive each other easily. We talked about “when this is over,” realizing that it won’t really ever be over, but it will get easier. We talked about the dogs, the dogs who so need our care, and how we so don’t have it to give.

So, this is how I will end this, this is what we need: are there any of you out there who could provide a home for our two dogs, separately or together, permanent or temporary?

Many blessings to all of you!

9-1-07

2007-09-02T05:23:00.000-07:00

9-1-07

I sat, tonight, on the front porch of the “cottage” and looked out to the moon, shining brightly over the water. A mere sliver gone, as the moon continues its waning cycle. Still bright enough to create a perfect solar cross of glare as the boats lie still in their sleep for the night. The water, accepting the moons presence, shimmered as a lover would, shimmered as if stroking long luxurious hair of golden strands.

I prayed. I prayed, following our laws of magic, asking for removal of blocks, asking for removal of my dis-ease. I realized, in moments, as I so often tell my students, that I am right where I am supposed to be. I am exhausted, both in body and mind. This haul has been long, but powerful. I realized I didn’t want much to be removed, because if I asked for struggles to go away without specifics, it could result in something I didn’t truly want.

Instead, I turned my thoughts to this process, to the power of every moment so far. Instead, I brought others to my mind. I thought of the neighbor here in RI. A teacher, recently retired, who went on a mission to teach in Africa and is now lying in a hospital bed deathly ill. I prayed for her recovery, for her blocks to be removed so she can heal.

I turned my thoughts to the beginning of this journey, to the people who have taken it with us. I thought about Mary, Sara and Lynn taking care of the dogs last week. And then, I thought of Emily who moved in for the weekend to make sure they were loved. Then I thought of Emily some more, her endurance, her driving immediately to us on that fateful night, and I was grateful. I prayed for peace in their lives and all those who have helped us. I prayed to hold onto that feeling of being blessed, to use it to give me endurance.

I thought about my dogs, the poor creatures so deserving of love that I don’t feel I can give right now. I thought of mine and Orien’s discussions about the dogs and how we feel it may be best if we can find them a loving home; separately, together, for a temporary or permanent stay. They are so loving, so caring, I can see it in their eyes as they look up at me, tails wagging. I am saddened on so many levels about this.

Then I thought of Orien Rose, upstairs sleeping, so strong. We are getting into a routine of IV antibiotics, three times a day. These infusions leave us with minimal sleep. We haven’t quite adjusted yet to the time frame, to the rotation of administration. I am trying to keep it together.

Yesterday, I found myself in my bathroom, one of the only rooms I can find some space alone, crying on the floor. Sobbing as Orien Rose had just picked at her head again. She can’t help it, I know it, but I get scared. I can see it in her eyes that she doesn’t mean it. I broke and walked away and retreated to the floor, where I cried it out a little. I was not unheard…

So this is where we are at: Orien Rose gets three treatments a day of IV antibiotics (at 7am, 4pm, and 11pm approximately). This schedule, with a slight improvise (at 4 instead of 3) because school will be starting, is what we will be doing for the next five weeks. Though sleep can happen, it rarely does for me, because even if I take the evening treatment and Orien takes the morning, I still hear the alarm. I am one of those people that can’t get back to sleep if I am awoken. And usually, because the alarm goes off a lot, I have no chance. I am exhausted and hoping to get a good night sleep soon.

Orien and I have been alone together for minutes at a time, both of us realizing that this is a small bump in a long road. It is not simple to leave Orien Rose with someone now. There are time constraints and training involved. There is fear and relief. A small car ride of 15 minutes on Thursday was the first time since leaving the hospital we could talk freely, outside of the home, without Orien Rose. The feeling was one of great joy and immense pain, it was weird to me. I feel as if I have gone backwards. I guess in a way this is true.

There is strain, and moment by moment I breath and try to hold it together. There is crankiness. But tonight, I sat by myself, I looked out at the moon, Her rays caressing me. I let my eyes soften, not needing to be sharp in that moment, that sweet safe moment. Orien Rose is upstairs sleeping, Orien is on the phone, I am not alone. I am completed by the moonlight, the reflection of the water, the depths of spirit that surround me. I am completed by the sounds of the house, the history of silence in the night, which when you listen is very rarely quiet.

Yes, there is a longer period of time layed down in front of us. Our endurance is being tested, so we adjust. I adjust. I contemplate my future, the future of my family and I can’t see very far. I have no plans right now, only moments of clarity that guide me to the next step that give me the strength to wake up another day. I plan in small increments. I have hopes, yes…that we will go to CA for the holidays, that I will be leaving in a few weeks for Mexico, that my semester will not be too much (with now only one class), that work will sustain me, but my planning is contained to small amounts of future.

Tuesday, I go back into my day job, not to take my externship, but to work with a fantastic kid, one who taught me so much last year. I look forward to my growth there. I wonder if I will finish out my degree at Marist (and before you all tell me I should, know that I am not thinking of leaving school all together, only finding one that better fits my needs. I am making NO decisions at this moment, though the moment will come soon). My Athena’s business keeps me going, educating, empowering. I have taken strong reins again to guide my team to success. I am booking the amount of parties I think will not overwhelm me right now. I am looking forward to a weekend with the trainers and hundreds of other distributors. I am looking forward to seeing my team shine when they get recharged. What I do to educate empowers me. I love it and it keeps me going.

Thursday night, Orien’s class started and he stood in front of 24 college students and rocked!! He glowed when he came home to me that night. He is brilliant in his skill. He magnifies glory when he signs, so in his element. I am always in awe at the way he can communicate so cleanly. I have always been inspired by those who were multi-lingual.

Wednesday, Orien will start another new job as an interpreter. He will start a job that, like my position, fits into the school schedule. He will work with a student who needs his services. He will walk into another beautiful world, too. He is familiar with this. It fits him well.

Orien Rose starts third grade on Wednesday. We have met with her school and the committee on special education, we have met her teacher and layed out a plan. All parties involved are very invigorating in that they show confidence in meeting her needs. They understand that there is not a constant, yet, as we have not had her in an educational setting. Orien Rose is excited to go to a new school, to have a new teacher. She will be pulled out for services: OT, Speech, etc… She will not be participating in PE or recess, though OT can fill some of that energy release need for her. The nurse will supervise a modified recess. Orien Rose will participate in all other activities normally. Orien Rose will meet with her school counselor to discuss anything that may arise for her. The art teacher is being informed that Orien Rose is an incredibly detailed artist who needs some help getting back to the ink and paper.

I feel good about this. The structure will be good for us, all of us, I think.

8-27-07 later...

2007-08-27T15:44:00.000-07:00

8-27-07 (later…)

Hello,
Thank you all for your kind words of advice. Some of you who have worked in the field have offered your experience. After researching, talking to MANY people here at the hospital as well as the infusion company, and keeping a level head, we are staying with the central line.

Some of you have given your advice on what we should do. Please, all of you, we have made the decision to stay with the central line and need all positive energy in that direction. When it came down to it, and everyone agreed it would be good (including the surgeon who did it and said she would again in the same situation), we opted not to put Orien Rose through another procedure and to keep a line open on a spot on her body that would be conspicuous. Statistically, the rate of infection on a PIC vs. a central line is insignificant.

So, Orien Rose has a line in a good place for school (no kids will see it or be tempted to touch it), bathing and moving. All parties are in agreement that this will be fine for the time we need it. No other procedure is needed, and it is a secure line. We will be leaving after her infusion tomorrow morning. The infusion company is set up for an appointment; the antibiotic is the correct one. We are now good to go (and cleared by ALL parties!!) Thank you all for helping us through this.

to PIC or not to PIC

2007-08-27T10:44:00.001-07:00

8-27-07

At 10:30am, the insurance company was called, various home infusion companies were called, the doctors were coming in to discuss discharge planning. Things like follow up appointments, the few things left we needed to do before we left, stuff like that were the conversations we were having.

Orien Rose and I both slept well last night, stirring lightly when the nurses came in to give a treatment, do a hepron lock, take vitals. We slept knowing we would be on the road shortly after we woke up and packed up.

So, at 10:30am, I am just about done packing up the room. Orien is over at the Ronald McDonald House doing the same. We are getting ready to go. Waiting only on the green light, and we hit a bump. No, not a bump, a tree in the path.

We had a small window of time to leave as we need to get home and coordinate a home visit by the infusion company. That window was narrowly closing when we were informed we wouldn’t be going home. As a matter of fact, we couldn’t go home with the central line that was put in. Needless to say, I was upset.

Apparently, even when Orien asked in the OR on Thursday, just as the line was about to go in, if it was good for 6-8 weeks, they didn’t realize we were going to NY. The pediatric surgeons will not sign off on a temporary line, one that can be pushed to six to eight weeks, but really should only be in for four, to cross state line. Nor was the infusion company happy with it.

I called Orien to tell him to stop packing. He informed me he was just about to call to tell me he was done! I explained the situation as best I could as the tears started coming down my face. He would be here in a minute, I knew it, and he said it.

Orien Rose was off in a wagon with one of the aids, so she was not privy to this breakdown. Once I got off the phone, and was left alone, I couldn’t stop it. I just cried and wrote as many questions as I could think of. I was not going to be side swiped again. I beat myself up for a small second that I was not more vigilant, that I relaxed just a little too much, trusted just a little too much. Then I just cried in frustration and sadness. Then Orien arrived, with a little more force than I.

He shut the door, closed the curtain and I vented and explained more. I explained that it happened and we needed to move forward and get home. I got angry at the steps that led to it, and the lack of communication between the professionals that led to this. I explained that Orien Rose was due for another shot, and soon, and we needed to not be in the state we were in when she got back to the room. We needed to be supportive of her. So we processed through it, got the people we needed to talk to, and asked for some questions to be answered. Basically, we were asking for the next step in getting Orien Rose the treatment she needs.

We are still awaiting more information. Doctors to get the right information to the right companies, the right notes to go in the charts. Then someone comes in to say, well…maybe she can go home with it (the central line). Nope, the safer is the PIC, discussion ended. We are going with a PIC. We have made the decisions, whether or not the home infusion company would go with it (the central line). Yes, we understand why now both surgeons put in the central line; they believed it to be okay. They wanted Orien Rose to go through less surgery, less anesthesia. Yes, we understand this too. The PIC is safer.

But, the surgeon who put it in is saying it is okay to go home with it. This surgeon was in surgery this morning and not available to talk to until this afternoon. No, she didn’t know we were going to NY, yes she would do it all the same, yes, it is okay to go home with.

Now, we wait for another procedure room, maybe… another sedation, maybe…

Orien and I want to be clear with each other about it, so there is no blame later on down the road. Right now, we are gathering information. We know that no matter what, because of setting up the infusion company AND the confusion about the line, we are not able to go home today. Now, we have a little bit of time to make a decision. I think this is the first pretty big decision we have had to make.

There are sides, benefits, to both. Procedures, no more procedures, Orien Rose’s comfort, ease of care, etc…all things we are thinking about right now. We have just a little time, and we are taking it. We are taking a break right now, aware that we started in conscious conflict (me wanting leaning toward no more procedures, him leaning towards the PIC), gathered more information, and now are truly on a equal path of decision, together, walking hand in hand trying to figure it out.

So, I will leave you with this information and update you later on tonight or tomorrow. Right now, Orien is walking and I am going to do some praying and meditating on it. Right now, I am going to gather some strength, pray for clarity and put one foot in front of the other. Right now, Orien Rose (who is now aware of what is going on) is giving her doll a bath in the sink, having a grand old time. As always, I am going to follow her lead, and go with the flow…I just need to figure out which flow…

One More Day - 8/26/07

2007-08-26T06:53:00.000-07:00

8-26-07

I can’t even remember what I wrote in the last update and I don’t have the energy to go back and read it. Or maybe, I just don’t want to read it. This hospital stay has been a little harder. The surgery didn’t take long, so it almost seemed like an annoyance at first when they told us everything LOOKED good (they still had the cultures to cook though). Perhaps this is why it is more difficult, but then again, I don’t need to know why. It just is. Even Sheri-Lynn, who came yesterday, could see it.

The news is, there is a Staff infection, not only on the exterior part but on the bone as well. We got the results yesterday afternoon. This, in itself, is a little difficult because bones are not very vascular. So, it takes a while of heavy duty treatment.

Now we are waiting to pinpoint the exact antibiotic to put Orien Rose on. Infectious Disease (ID) says that she will be on this antibiotic (and we should find out this one sometime this morning) for 6 weeks. So Orien Rose can resume some normalcy, we will go home with the central line in and administer the antibiotics there with the aid of an infusion company. Then ID said we will follow up with an oral antibiotic for about 6 months. From neuro’s standpoint, the clock to the next surgery begins after the IV antibiotics are done. Conservatively, it could be 6 months from then before the skull reconstruction.

Orien Rose has been really cranky this stay. It has been uncomfortable for all of it. And, I don’t know if it ever was comfortable, but we definitely felt supported and taken care of. I feel a little disconnected from it this time, not so in the moment. Perhaps I am trying to move too fast? I don’t know. I do know that I keep looking forward to when I can take a break, but I don’t know that that is a good way to be right now. I feel like I am holding my breath. With no oxygen, of course my brain is a mess.

Orien Rose had to get two immunizations last night and she wasn’t happy about it. Because of the accident, and nature of the injury, she has received the Tetanus vaccine as well as immunoglobulin. Yesterday, she had a follow up to that. It wasn’t pleasant.

I know that I wrote about the nurse who did blood work last week for ID. Well, she was the same nurse who ended up doing the pre-op blood work, too. To make a long story short, she will not be touching my daughter again. She came up shaking, but highly recommended by the nurse who would have originally taken her blood. Figuring the staff knew what they were talking about (and they probably did in other cases), I let it happen. She poked and prodded Orien Rose for three minutes in one arm, then in the next, though again we told her where to look first! After two sticks and digging and Orien Rose screaming, she said she was not allowed to do it a third time. The original nurse who found the vein in the hand (where we told her to look) needed to come in and got the blood immediately. The energy is just not right with us and her. She won’t be touching Orien Rose again.

I bring this up now, because Orien Rose is replaying this over and over now every time the nurses here have to give her something. She is irritable, cranky, fights and needs to be held. I am so pissed at myself for letting it happen again with that nurse. Orien Rose needed two shots last night and it hurt to be a part of that panic. Sheri-Lynn and her son were here, and I could feel their unease as well. It was not an easy moment. There was no explaining to her later when they needed to take blood that it wouldn’t hurt (because of the central line).

So, we are here, doing some damage control with the medical treatment in many ways. We are walking Orien Rose through some more relaxation techniques. We are waiting to see what medication she will be on for the next 6 weeks. We are confident that all of this can be healed.

Orien and I are on edge and I am physically uncomfortable. I don’t know what it is about the hospital and my feet, but they just don’t go well together. There has not been a lot of time for Orien and I to check in with each other, and I feel disconnected with him. It seems our rhythm is off. He leaves, I start to write, he comes in I am still writing. I am writing, he is reading. I want to walk, he wants to sit. He wants to walk, I want to sit. Oh boy, it is confusing. Both of us are trying to take care of Orien Rose and ourselves and there is not a whole lot of room for us to take care of each other this round. We are in a holding pattern, and it can get uncomfortable. We are doing it though. We are strong!

At the moment, Orien Rose is playing in the playroom and we are taking time to do what we need to. We are waiting for ID to come in and discuss the next step. We will be here until at least tomorrow. That much we know, as we can’t get in touch with the infusion company and insurance information until then. The discharge planner is on it! The doctors also want Orien Rose on the correct antibiotic before we leave. So, we wait.

Thank you so much to all of you who have brought us food, made phone calls and sent emails. This is truly what gets us through all of it! PLEASE, keep them coming. The support at home, the people taking care of our house and animals allows us to keep our energies focused on healing. We are so grateful to all of you! Having visitors helps us keep our mind off things, and allows the time to go a little faster. I know that you have sent a lot of energy to us, and I am almost feeling like I am asking too much, that you are frying up like us. So, again, I need to thank you for taking some of this burden for us. I know from experience and magic that energy returns. I know that the more you give out the more that comes back. So, please know that you will be blessed many times. I am so thankful, grateful, supported, held by and for you! Thank you.

Orien Rose in the Morning 8-25-07

2007-08-25T05:00:00.000-07:00

8-25-07

I am sorry I didn’t write yesterday. I think that I could have used it, held it, and had a tool to get through the exhaustion. It was truly and exhausting day, not because a lot happened, but because a lot led up to it.

Orien Rose was very cranky yesterday, extremely irritable. She didn’t move much, wanted to go for walks, then wanted to do nothing but stare at the TV. It looked as if she wasn’t present, but every once in a while she would make a comment about what we were talking about and we knew she was with us.

Her energy was low yesterday and I think Orien and I were both feeling that. I realized that for all that we didn’t like about Blythedale, at least there were kids there to help her heal. We have a roommate here now, but it is not the same (except for the middle of the night crying…lol…). Orien Rose is social. Like her father, that is how she heals.

The nurses, doctors, aids…they were all so happy to see Orien. We had people (nurses AND doctors) stop in the room because they saw the name and just needed to say, “Hi.” We definitely made an impression the last time we were here!! Whoo. The doctors who know us tell the other doctors how open we are, and that it is okay to approach us. I heard a conversation in the hallway with just that flavor. The nurses are being fed again (we always share the wonderful meals you bring us!!) and so happy each time they come in to see us.

There is not a lot going on here to keep us busy, so it is a much mellower trip. This one seems to be all about waiting. Quite a lesson in waiting, anyone knows. Trauma brings with is adrenaline, waiting has you sitting in your own skin for a long period of time.

The surgery, once we finally got in, went fairly quickly. From what the doctors have said so far, Orien Rose’s bone is good. It looked healthy and stron. So did her scalp. So the infection may only be external. However, we will not know the final word on infection until the cultures they took (they didn’t need to remove any bone, only scrape it) are done cooking. We should know something more today.

Orien Rose has a central line in, which means that we can take her home and administer the longer term IV antibiotics should we need it. Once we get an idea of what is going on, if something is going on, we will know the course of action for the medication. For now, we wait. For now, we watch her temperature, get her vitals every hour or so, and wait. She has run a fever a few times so we are keeping an eye on that.

Yesterday, Orien Rose got fitted for a new (leopard print) helmet. It is such a cool process. Now, I had some inkling that she was in pain through the day because of the sedentary way about her. When I would ask her if she was in pain, she would say, “no.” When the prosthetics guy went to put the sock on her head to make the mold, though, she flipped out screaming. She was in pain. After seeing if this was fear or pain, I realized that I would have to see if he could come back. He said he could, in an hour.

So, I spoke with Orien Rose about pain. I asked her to tell me if there was pain, and that she needed to let me know. She said there was. I asked her on a scale from 0-10 (10 being greatest) how bad was it. She said, “6.” Holy crap!! I am not quite sure her fear of telling us there is pain, but I made sure to get it through to her that it was important she did tell us. We talked about it and she got some Tylenol (she was a little hot, too). She got some morphine later on, just in time for the helmet guy to come back.

Just before she was being fitted for the helmet, I asked her if there was anymore pain. She said, “No.” When the sock went on her head she said, “There is a little pain, but it’s okay.” All right, we were getting somewhere. I knew there was an open line of communication about pain now. The rest of the day would get better. It did. We were able to better manage the pain, and Orien Rose was able to rest and relax. She did run a fever a few more times yesterday and last night, but we are watching it.

It is almost 8am on Saturday, and hopefully we will have more answers today. Originally we were told we would be here until tomorrow (Sunday), but then we were told possibly Monday or Tuesday because of the IV antibiotics. We would like to be home tomorrow, but will do what we have to.

This week coming up is busy for us. Orien starts his semester teaching, Orien Rose gets to meet her teacher. We have a Committee on Special Education (CSE) meeting to determine what Orien Rose is going to need in school. The doctor’s told us to live our lives and we are!! They are so happy.

Sheri-Lynn dropped off last night’s meal to us in the hospital. It was so good to see her here, to have someone in the room with us. We like people! My mother left yesterday morning and my father-in-law is not coming back until this afternoon (he was here on Thursday). It was Orien and I for the most part yesterday, and we didn’t connect as much as we could have. I guess we are both a little on edge as we wait for the next plan of action. He, definitely more than I, as I have a better tolerance for waiting, is feeling the wait. We are doing okay, though. He takes lots of walks, I read and write. He plays his guitar, I contemplate a walk. We all go out to get an icey (though I sit with Orien Rose on the bench, as she can’t put her helmet on yet with her head swollen). We visit with the nurses!

I have to say, Athena’s is amazing. I know I say it over and over, but we just keep hearing stories. So, Jen…this one is for you. There is a nurse here, who when you first started your business went to almost all your parties for a period of two years! She told the story of your parties, how you gave her gifts because she was at so many of them. She told us about the progress you would report, how you recruited 8 people into the company, how you made your first $100,000. Wow!! That was almost 10 years ago, she was just 18 or 19 and so impressed! Now, she is amazed at how many Goddesses there are, how quickly we are replicating, how amazing the company is and what you have done for us! She remembers you with a smile on her face and amazement in her eyes that tells me you truly made an impression! As a matter of fact, Jen, she said about you, “she’s been here? I haven’t seen her…she is someone who is so unforgettable!”

Thank you to all of you who have called, messaged and emailed this time around! Thank you to all of you who have sent energy. Orien Rose is healthy, she is strong, she is healing quickly. Orien Rose’s head is great, new stitches, a cleaner heal. We will be out of here as soon as we can. In the meantime, we wait.

8-23-07 after the surgery

2007-08-23T15:55:00.000-07:00

8-23-07

It has been a long day, and I am not neglecting all of you who have been interested in Orien Rose’s progress. Our day started, really, last night as we got our stuff together. Neither Orien nor I could really sleep. When I finally did fall out, it was restless and full of nasty dreams that afforded me no rest.

I woke this morning to the alarm apparently at its end, because I did not hit snooze and there was no more to be had. So I lay on that edge of wake and sleep, hoping I wouldn’t fall asleep again, but wanting just a few more minutes rest. It was not to happen. I had to pee.

So, we got to the hospital this morning a little after 8am. We walked from the Ronald McDonald house where we met my mother, parked our car and dropped off bags. Orien Rose toted hers behind her. Anxious, she would get a little zealous and end up turning it over and dragging it. After a while, it felt like a game to see just how much further she could push me to the edge as I expressed dislike of her cajoling. Looking back, it was kind of funny, actually.

Admissions went fairly smoothly. We went from there up to the Surgical Services to let them know we would be in the pre-op waiting room. Now getting hungry, Orien Rose read me the sign that said “Absolutely no food or drink in this room.” She was pissed, as another kid’s parents (whose kid already went into surgery) brought in Dunkin Doughnuts. She was vocal about it, too. They didn’t get the hint, though. Even after just telling someone that they couldn’t eat in front of their kid because he couldn’t eat…I guess it was all right to eat in front of other people’s children in the same situation? Or, perhaps they didn’t realize there was a post-op room that allowed food. Luckily, the surgical nurse had come out and let them in on it! J

Orien Rose was not satisfied, though…lol…she wanted food. So, she went for quite a few walks as we waited for her 9:30/10am surgery. At about 9:30, the neurosurgeon came out to inform me to “sit tight.” He had an emergency come up. We can appreciate emergencies.

Orien Rose went for more walks, visited the nurses in PICU, commissioned the clowns to pay the pre-op waiting room, and generally was distracted! I sat, prayed, meditated, talked with my mother. I even had the opportunity to introduce Orien Rose to the little boy of another Goddess of Athena’s that I wrote about the other day. He was there to have follow-up surgery! It was so cool to have that happen!

Hasbro has been a blessing this whole time, and they continued to be so. Realizing that surgery was going to be a far wait off, we had a number of people figuring out what we could do with our time. Perhaps we could go get another helmet fitted? Nope, not going to work? A room then? Yes, we got our room before the surgery. We were comfortable as Orien Rose grew even hungrier. She was getting very irritable, but handling it very well.

Around 1:45, Orien Rose was transported down to surgery. We sat in the prep room with her for a small amount of time. The neurosurgeon and anesthesiologists where there to discuss the surgery with us, in no time. Orien went with Orien Rose into the operating room, and returned to us after she was “under.” Then we waited.

Now, Orien Rose is in her room on the 5th floor. We are getting situated. I am writing to you. We are tired, but happy. Orien Rose is sleeping, awaiting her next poke (really from me, because we need to get the sticky monitor pads off). I am going to eat soon, and settle in to the discussions with Orien about how tonight is going to go. Really, I am just going to be, with my child by my side for a little while. I am going to relish in the energy sent our way, in family who is here, in phone calls and emails!

a Quick one

2007-08-22T20:44:00.000-07:00

We will be in Hasbro tomorrow morning at 8am. Orien Rose's surgery is scheduled for 9:30/10am. We were told to expect to be in the hospital for a few days. I will let you all know more when I do. We can be reached on our cell phones and by my email address. We also have a room again at the Ronald McDonald House. Thank you all so much for your continued support and healing!! Blessings Christine

8-22-07

2007-08-21T05:20:00.001-07:00

8/22/07

I left you last with the information about the next surgery, the brilliance (as in shining) of Athena’s and an upcoming party. Since then, Orien and I have had some time to process and to talk with each other about just how scared we are.

We are pulling through this, we are passionate about Orien Rose’s health. We have made a list of things to do, and we are doing them. Bills have gotten paid, letters written to school boards, appointments with doctors held, grocery shopping. It’s as if the little day to day stuff is getting so huge. I am not sure if things are disproportionate or if they just seem that way. We have always been busy people.

The last few days have been wonderful. They have been painfully beautiful. Saturday night, I was at my mother’s helping prepare food for the party the next day. As we were cutting up fruit for the salad, SONiA and Terry got there. I was nervous. Here I was, again, in the presence of someone who was doing so much for this world. Here I was, standing next to someone I so admired. It is not often I am star struck, but SONiA does it to me. So, it was nice to be able to sit with her and Terry, to talk about normal things, to bring it to a right size.

We sat out on my mother’s back porch, talking of our childhoods. We talked about how we got into trouble, how we have grown, and how we still get in trouble sometimes. We talked about passions. We talked about music and travel. I got to play the SONiA signature guitar! HOLY CRAP!!!

We stayed up pretty late, but it was worth it to just be with Terry and SONiA, both very down to Earth, blessed people. The next day was to bring even more beauty, some of it in simple forms, some so mind blowing. We arrived at my mother’s early, ate some great breakfast (made sure SONiA got her coffee, apparently she and Orien are very alike there), and began preparations for the day. This was not before I took some time to sit down and play my guitar and sing for a little while. I had to, there was so much creativity surrounding me.

At some point, Orien took SONiA shopping. Oh boy!! They visited ALTO music, a favorite place of ours to go. SONiA bought a keyboard, Orien traded a guitar. Me, I went to Sam’s club with Kelly and Dave to pick up a few more things for the party.

Through all of this, Orien Rose came and went, playing with the kids already there. She was outside, next door, inside and outside again. The whole day was a chase of where Orien Rose was. When her friends from school got there, she was hard to find, but we kept tabs on her. It was nice to see people from her class, to speak (albeit briefly) with the parents of some of the children. I felt bad that I couldn’t talk more, and they were gone before I knew it. I didn’t really sit down (other than to listen to the music) until about 10pm.

People started showing up right about 2pm. It was a horde, coming en masse to join us in sustenance. It was really a day about sustenance, of the soul, of the belly, of the spirit. We had food, music, people, conversation, swimming, children running everywhere!! Orien Rose was glowing in it, even though she was having a difficult time with the restrictions. We found she made her way onto the trampoline at one point, and gave for one swim in the pool. I would look up the hill sometimes, to where the trampoline was and I could see her sitting just outside the opening, pleading with her friends to come out. They did for a little bit, but not long enough for Orien Rose. I could see her mope, but she stayed busy! She is strong.

The music started, and I sat front row. I took the time out of preparing, making sure things were done, and cried as SONiA began her set. She is powerful and her music spoke to my heart, opening me up so I could feel just a little bit more. Her music allowed me to take my mind off what I needed to do and to think about the world as a whole, about connection, about borders, war, peace, hunger. It was a relief, one so big I couldn’t help but well up.

I got little chance to converse with many, though I did with a few. I don’t know where I was most of the day, probably just listening to music. I remember realizing at one point that my life was amazing (not that I haven’t realized this many times through every day, I just remember feeling it sometime yesterday). I remember feeling such love for Orien Rose, such compassion and understanding. Some days, I have been so tapped out, I have isolated myself from my household just to get a moment alone. Not this weekend. It was energizing being connected, just like I know it is, but sometimes need to be reminded.

Orien Rose, Orien Rose, how does your garden grow? Going backwards a little, Meryl came by on Friday to spend some time and say goodbye. I will miss her greatly, and although I put on a strong face for her, telling her it will be good for her spirit to travel (which it will, I wasn’t lying) I don’t want her to go. I told myself, and her, that now she lives so far away, we will probably see each other more. Maybe that will be true. Meryl is another fantastic soul that found their way into my life (or I into hers). I finally got to hear the song she wrote for Orien Rose…

She is special, my daughter. I am not sure why she has these trials to go through, but I know it has changed her. We stayed up talking last night about her next surgery, her friends and not being able to do what they can. We talked about school, and how she will be going with a helmet, but that we will be there to help her explain. We talked about power and healing. We talked about being tired, about accidents and how it could have been anything that hurt her. We talked about the healing now.

Last night, Orien Rose got out of the tub, and her head was bleeding. Not just the spot of reddish skin that has not healed, but dripping. Its as if we are saying now, “there is an infection” and it is manifesting larger. I don’t want to do it that way. I want to do it positively as that is what has gotten us through this so far.

Orien Rose showed me a bump on the back of her head, the lower left side. She said it hurt. She only discovered it yesterday. I got scared and walked away for a moment so she didn’t see it. I came back and asked her about it. It only hurts when she touches it, it wasn’t there the day before, she only felt it for the first time yesterday. We will be going to the doctor’s tomorrow and will see what it is.

It seems the closer we get, the more nerve wracking it is, the more things are popping up. Again, I don’t want to do it this way. We have been through so much, such intensity, that these are little things. However, they are just as important. In exhaustion, it is hard to see how important sometimes, so I am pleading with you all to help us once again.

This is what I would like to leave you all with, since you have been so instrumental with the healing of Orien Rose. Orien Rose will be in surgery on Thursday morning, and I will post more information as I have it. Please, as we take this next step of our journey, as we travel through this week, keep this in your mind:

Orien Rose is healthy, the surgery will be wonderfully healing, she is strong, powerful, energetic and healthy! She is stronger than an oak tree. She can run, jump, swim, and swing. She can read at length, write amazing stories, and draw intricate pictures. She loves horses and they respond so well to her. She is complex, many layered, deep. She communicates clearly and is aware of her body. She is compassionate. She is spirited. She is surrounded by love. Her parents love her and have patience to guide her, they are strong and have the strength to carry the world. Orien Rose is safe.

8-16-07

2007-08-16T09:56:00.001-07:00

8-16-07

What can I say, worlds can change in a moment. They can expand with healing, they can implode from isolation. We choose, Orien and I, to live with options. This has been hard for us, this journey, as a lot of the ability to make choices has been taken away. I am the type of person to weigh, contemplate, look ahead, see patterns, and then make the decision to move forward. I have learned humility through spontaneity and emergency.

Yesterday, after numerous phone calls to make it happen, we met with the neurosurgeon. Upon entering the room we were told that we had a date of August 28^th to do the skull reconstruction. Upon further review of Orien Rose’s health, we brought to the doctor’s attention the spot on her head that has not been healing.

Originally, where Orien Rose’s scar intersects was healing slowly. We were told to saline and peroxide it daily, as well as cleaning out the helmet. The spot, which looked like a sunflower seed (in shape and size) is now the size of a plum pit and just as moist. Though we have cleaned it, air dried it, and watched it, the spot has shown evidence toward infection of the underlying bone. Surgery for the skull reconstruction needs to be put off. Some better news from this visit is that, although plastics has ordered the prosthetic, if they got into Orien Rose’s and determined her skull was thick enough, they would go with the skull split procedure. Perhaps this change in time frame will allow for enough thickening?

So, the next plan of action was to get Orien Rose on a course of antibiotics for 6-8 weeks. In two weeks, they would have checked to see if she was responding, and if not, a debriment (sp?) surgery would have been done to remove more of the bone. An appointment was made for us to meet with Infectious Diseases the next morning to set this ball in motion. We were told to keep it in the back of our minds that inpatient made be needed for intravenous antibiotics.

We left there, heavy, slightly in shock. Walking out to the car, it was obvious that Orien was in pain. It was hard for me too, but I don’t think I was fully there yet to realize it. I got to experience some of that more today. As we drove over to the Athena’s home office, I could see his eyes tearing as he grappled with the news. I wanted him to pull over so I could hold him, but that is how I heal. I am not sure it would have worked for him, so I didn’t suggest it. Instead, I placed my hand in his, and we rode mostly in silence. Orien Rose didn’t say much. She was excited to be going to the office.

We arrived and the ticket table was already set up. We arrived, and there were people there to already give us hugs. We arrived and it was relief stepping through the door. Orien Rose was home. She knew it, we knew it. She immediately found her way to the kitchen and to the “Queen Mum.” Attached to her hip, Orien Rose followed Audrey all around the office. It was so nice to see. Orien Rose managed to set herself up with food: a bagel, brownies, fruit, snacks, to drink iced tea and water, all within minutes. She made her way to the front table to help with the raffle tickets, explaining to everyone who bought them that if they stuck to her finger, it was lucky. She was asked, in jest, if she wanted to work out the September meeting. They didn’t think she would say, “Yes.” But oh, did she! I am sure she will be asking me incessantly about it. J

While I was there, watching Orien Rose interact with people, shaking their hands, taking their tickets, I was in awe. My daughter was alive, so alive. Another Goddess shared with me the story of her son and his surgery. She told me that he said to her that he would be brave, because Orien Rose had been brave. He was following her story. I couldn’t help but cry. My child was an inspiration; my child’s story is helping other kids! It made me want to learn even more about her, my child, how she is experiencing this! This is so her journey.

The evening, the beginning of the BBW, had Orien Rose at the front of the room, in her glory, on television. She was so excited to see herself on the TV. Orien and I sat in the back of the room, giving her space (after checking it first) safely. Jen went to the mike and began introducing the evening. Overwhelming gratitude made my cheeks hot, my knees weak and I grabbed onto Orien’s hand so he could walk with me to the front where Orien Rose was already basking in a standing ovation. We said some words, words I can’t remember but I am sure will see later and not be satisfied with. What words do you use to thank hundreds of people who gathered their resources together to help us maintain good healing! What words do I give, as I stood there. All I could see as I spoke was Jen in the hospital with me, was Jen in PICU, me thinking Orien Rose was asleep when I asked her if she wanted to go in. What she walked into was a different situation, one where Orien Rose was restless and fighting. A moment in time that seemed to slow as I tried to comfort Orien Rose’s fighting, choking, tearing, flailing. All that time, Jen stood there, I could see her out of the corner of my eye, tears in her eyes as they grew ever bigger in mine. In that moment, I was powerless. I was not in control, only a bystander trying my best to comfort.

This is what I kept seeing as I spoke to you last night at Athena’s. This is what played in my head as I thought of the bravery of Jen and all she stands for. This is what I thought of when I wanted to tell you all how proud I am to be a part of such an amazing company. That is a picture that words won’t ever be able to fully understand.

I am glad I stayed, laughed and just was with all of you. Strong, powerful people on a mission to education, empower and entertain! The burden of my heaviness was carried away for the moments I curled up on the couch in comfort as if I were in my own home. Even the departure, standing outside talking, was a reprieve, a healing, a cleansing. I am glad I am back in my roles as trainer and Goddess. I am glad I will be writing for the next issue of Happy Buzzing. I am glad for the normalcy of it. That my life, surrounded by empowerment, is normal says so much!

The ride home, though Orien and I talked a bit, was fairly quiet. We knew we were going home to little sleep and more doctors the next day. It was a restless sleep full of dream images, strong but unrecognizable. Morning came, mourning came.

We drove now familiar highways and roads back to the hospital we spent so much time in. Now, going to the lower level to the pediatrics clinic, just inside of the garden that gave us solace, we were teased by its presence. We were not there to take a break from upstairs, we were there to enter into the next stage of this journey.

Upon arriving at the doctor’s office today, we checked in, payed our co-pay, and sat in the beautiful Rainbow Pediatrics waiting room until we were called in. Orien and I, already on edge, were trying to stay in our bodies as Orien Rose play with the toys attached to the wall. I don’t think I could even see her fully. It wasn’t long before we were in a room, the Infectious Disease doctor getting a quick version of the story. We had not met with this doctor before, and I found this part to be slightly annoying. I was not being fair. She had only hours to read the reports, we had months of stuff to tell.

When we finally got to the current reason for being there, the doctor informed us that she was not comfortable just putting Orien Rose on antibiotics. She wanted a culture from the site. However, an external culture would only give the bacteria living on the outside, not what was going on inside. So, she called the neurosurgeon to discuss a plan. There was not an answer to her page, so we moved on to bloodwork.

On Tuesday, Orien Rose had bloodwork and it went smoothly. She was proud she did not put up a fight and went into this mornings blood work with the same amount of pride. She was anxious, yes, but we got there step by step. I told the woman taking the blood that her right arm was better, but she had other plans. Once the needle was in Orien Rose’s left arm, she could not get any blood. She poked, prodded, moved the needle in then out, in then out, trying desperately to get blood from a now screaming Orien Rose who was pissed! “It hurts,” she cried! She doesn’t cry of pain, so I knew this was big. It truly hurt. Unfortunately, it didn’t work and we needed to go to the right arm (imagine that!).

Of course, Orien Rose was now determined to put up a fight. All the work we had done on staying calm had taken so many steps backwards and I was angry. The moment, though, was not right so I shelved it and focused on Orien Rose. She wanted a butterfly shaped needle (the one with the tube) and so we cautioned the nurse that she should hear what Orien Rose was saying. The nurse proceeded to tell us why she didn’t like that kind, but that she would do it. Orien Rose put her arm out, said, “Okay, this will be better.” As soon as the needle was in, the blood came out, strong and steady!

While this was happening, the Infectious Disease doctor had spoken with the neurosurgeon. The plan of action they discussed is that we will come back next week for an appointment with neuro on Wednesday and get admitted on Thursday for the debrisment so infectious diseases can get a clean culture on the bacteria and neuro can remove any bone they may have to. This, rather than just giving antibiotics, has made us feel a little more at ease. The surgery is much smaller than the others she has had, but we will probably have to stay in the hospital for a day or two. This will allow an opportunity to give Orien Rose some IV antibiotics and then move her to oral. We will then follow a six to eight week course of antibiotics in which the time frame for the skull reconstruction will be revisited.

Needless to say, Orien and I are a little frazzled. We know, I know, that things happen for a reason. We have been trying to keep it together. For me, it feels like a restlessness in my legs, my arms, my hands. It feels like my heart beat is slow and steady, but I want to run a marathon as if at any moment I could get up from the couch and start running. It feels like my head is so distantly echoing, barely audible, the sounds of footsteps as they leave a room as if I can’t think…no, as if I don’t want to think anymore! Yet, each time I get asked a question, or my attention is drawn away from my moment, I get pushed so fast back into my head I am spinning.

And then there is you, your faces, the faces of friends and family, recognizable. There are the faces we don’t know yet. There are your hands, held together, held in unity and I can see them. I can see you dancing, drumming, hanging out and talking. I am refreshed by this, even as I am scattered. I am scattered and brought back together. I am scattered and I am whole. I am one end of the spectrum to the next, all in one amazing moment! Thank you.

At this moment, we await word from doctors. A phone message has come in about some pre-op appointment with plastics for the 27^th. We will not, or at least we don’t think, be having a surgery performed on the 28^th. It will be on the 23^rd. Huh? Shortly we will have a few more answers, and that may make us feel a little better…and it may not. Do answers ever make me feel better? That is a question I ask myself often. Living to only know the answers doesn’t allow me time for the questions. For now, I am living in the question. I will let you know the answer later…

8-12-07 Heather's Birthday

2007-08-12T11:46:00.001-07:00

8-12-07

Today is my sister’s birthday! What a joyous day. I remember when she was born, that little baby in the cradle, so cute I wanted to squeeze her tight. She was so small, fragile, open to learning. We were all that way once. What hardens us?

There are way too many bifurcations (a new word I learned, I LOVE IT!!) to even get into the whole of it. There are channels upon channels of confusion. I try to see the line coming from my core to my solidity as the person I am today, and I can see the estuaries. I can see the rivers that rage through me, passionate and strong and reaching the ocean no matter what. I can see too, the small dreams, some that have stopped dead, so surrounded by a multitude of other things that it can’t move. Ahh, but I have big dreams too! And not so big dreams, all of equal importance.

I was speaking with Mary the other day. We were talking about the big rocks in life and the little rocks in life. The big rocks, perhaps someone would consider that family, work, spirit. The little ones, those things that need to get done, but you may or may not like doing them. We were talking in regards to house cleaning. If paying someone $50 a week to clean your house will allow you to make $50 more that week, is it worth it?

Perhaps I bring this up, because I am at a point where prioritizing is necessary. Orien Rose has just spent the last two nights at my mothers and Orien is away until we meet him in RI Tuesday afternoon. I have had some time to be alone. I have had some time to toss and turn, relax, breath, get anxious again. I have had some time to sit in my skin, be uncomfortable, try to get out and sit in it again. This is the process of healing, of trauma. I need and want, the time to be alone, just so I don’t have to put off any longer the big stuff.

Orien and I have done well at maintaining the day to day process of how our lives have changed, and how they haven’t. It is easy, however, to get caught up in the amazement of it, in the power of it that “one more thing” sometimes becomes a whole day of it. This is where we, I, really need to watch and be aware of myself. I am conscious of the process, I am hurting, I am watching as Orien Rose and Orien heal as well. Sometimes we do it together, as a unit, sometimes it is individual or between only two of us. There are so many things that are healing.

I want to keep writing to you all, but I don’t have a whole lot of information to give you. Our process is becoming increasingly internal as we wait for the next surgery and recovery. It can get a little exhausting as we get on the phone, fill out paperwork, make more phone calls, line up appointments. I have taken to writing everything down again, and then I get annoyed that I have to, then I forgive myself quickly (remembering that I have a process, too, that some things are more important).

At this point, we are waiting for neuro and plastics to communicate. They need to decide when and what procedure Orien Rose will be going through. We have scheduled an appointment with the neurosurgeon for Wednesday before we go over to the Athena’s home office. We would like some clearer answers then.

People are important, and sometimes I feel a little disconnected. I am glad to be going to an Athena’s event where I can sit with powerful women, listening to speakers who are funny and educated! I am happy that we will be having the party for Orien Rose on the 19^th (I hope you all can make it!), as music is good for the soul. People, together, coming as community, increases the amount we can give. I want to give. I, we, have been given, (and it is still coming strong) so much!

Today, I went to pick up Orien Rose. She didn’t want to come home with me. She wanted to stay and swim. Yes, she is swimming now, helmet and all. She is still restricted in things she can do, but she is trying…lol…she is so energetic. She has lost nothing of her spark, still trying to do everything. She is exploring, having fun, brightening even more as each day passes. Her ability to heal (others) has increased, her compassion for those hurt has deepened (and she was pretty deep before). Orien Rose gives back too.

We were talking about all the stuffed animals Orien Rose received in the hospital. She loves them. She loves to climb into her top bed and sit within them. She feels safe (and looks so cute) surrounded by them. She said at some point, she would like to donate a few to other kids in the hospital. She wants to make sure they feel good too.

So, as things calm a little, Orien Rose and I sit a little more and connect. We cuddle on the couch, we go outside as she walks her puppy. Orien and I discuss the upcoming school year. We talk about me attending college (and dropping all but one class) and working with the kids, we talk about Orien Rose walking into a new school, we talk about the classes he will be teaching (Professor Laplante…how fun!) and the energy we are putting out there towards a day job that will fall within the school day (BOCES?). We talk about how many parties I will do, how many meetings I will conduct and my training schedule. We talk without tension. We talk in acceptance that all things that have come to us are blessings.

We would like to do a little more traveling this Summer, as our Summer has gone by so fast. We were thinking of going to the Pez museum in PA for an overnight. We shall see! We are looking forward to the 19^th and seeing SONiA again and hanging with friends on home turf. We are looking forward to the Holiday season and visiting family in CA who still have not seen their niece and cousin. We look forward to the various events going on locally and to having people on our lawn soon for an unstructured drum circle. We are looking forward…period!

8-10-07

2007-08-10T21:56:00.001-07:00

8-10-07

I don’t know if it is because I am crabby that I haven’t written or if I am crabby because I haven’t written. Either way, it is time to write. It’s past time to write, to let you in on what has been happening this past week.

It seems that time is getting longer and faster. I think to write something down and next thing I know, it has been almost a week. Today, though, I stopped to notice things. As I drove up my driveway, the road bare of asphalt, breathing earth, letting off steam, I noticed things. I noticed the magic of this last week. I noticed the Earth turning so green from the last twenty four hours of rain. I noticed the scent of last weeks ritual still in the air. I noticed the way my house looks when it is trimmed, weed wacked and taken care of.

Things are getting so back to normal, or at least it looks like it, that it is hard to believe that Orien Rose’s accident was just over two months ago. She is fighting everything, wanting her way, spirited, just like she always was! Orien Rose is passionate. She is enjoying her new puppy and getting in trouble sometimes for not taking care of what needs to be take care of. Orien Rose is strong. She argues her point adamantly when she feels something is not fair. Orien Rose is creative. Her drawing is increasing, getting slightly more complex. This is the area we need to work on the most right now. She is getting fatigued quickly.

This past week was filled with insurance approvals for OT and speech, appointments and anticipations. A lot of time has been spent on the phone, talking with doctors. We don’t know yet when the next surgery is and the limbo is painful. I think if there were something solid, concrete, I would feel a little better. As August quickly flies by, I think about what we have had of a Summer. I realize there is over a month left, over a full moon cycle of time before Summer is officially over, but it doesn’t feel that way. If we gauge by the school year, it is so close.

My semester starts soon. A week or two more and I will be sitting in a classroom again. Only one, though, as I have decided to drop my other class and I can’t do my internship. I am becoming more torn on this. I don’t feel ready, which is why I dropped my class, but I want to be done. I am feeling more defeated than I have about the internship. I know what I need to do to take care of my family. It is only within this week, as things become closer to real, that I mourn. I feel slightly defeated. I know that at some point that empowerment, that drive will come back, though. I have faith in that. Right now, it is as if I hit a wall and everything that was following me is coming towards me fast! It is hard to breath sometimes and I just need to sit still.

Orien and I have been okay, though he and I have fought a few times. I found the past few days that issues we were dealing with before the accident have resurfaced. They had not gone away with this trauma, but apparently they were not that important for the trauma. They are sneaking back in. I feel as if I have been living in one absolutely miraculous moment after another, so I know that this to shall pass. I am uncomfortable, but very loved. I know this. I feel this with everything in my core. It is time for a break for me, I am just trying to figure out how to get it. There is so much to be done.

Orien is away for the next few days. He is taking care of some things he needs to do for himself. I am glad he is. I need him strong. I need him to take care of himself. I need to be able to take care of myself sooner than later, so he will need to be somewhat recharged.

I will meet Orien with Orien Rose in RI on Tuesday. We are going up for another neuro appointment on Wednesday as well as an Athena’s event. I am looking forward to being in RI again, being at the Cottage, sitting if only for a day. I am know there will be more to process as Orien Rose may go on the boat this time (a new life jacket is being purchased for her as hers was cut off of her body).

Orien and I met with Orien Rose’s new principal and guidance counselor as well as her old principal and social worker this week. It was a good meeting, one that put both Orien and I at ease about the upcoming start of the school year. Orien Rose is healing so quickly, so wonderfully, she will be back to school in September. We talked at the meeting about the committee on special education, getting a 504, and making sure needs were met. The school is great, and so there for us in what we need. Suggestions, talk, solutions, accommodations…all lay on the table in front of us. We don’t know how she will be walking in that first day, whether with a helmet or fresh scars. We don’t know. I wish that we had some idea, but I am sure that we will be prepared either way.

This is where I realized that there is a lot inside of me that just wants to come out in tears. I feel as if, when I am talking to people, I don’t have a lot to say. All I want to do is cry and I spend all of my energy trying not to in the moment. As I sat at that table, talking of Orien Rose, the realization that she would be going to school, that we were so close, hit me. I couldn’t talk, only listen, or I would have broken open.

The same happened earlier in the week as I met with people who are doing a fundraiser for us in Dutchess County. I wanted to give input, but no words could come out. All I can say is that “I am blown away.” It is truly how I feel, as if a large wind came and picked me up. It is as if I am floating on other people’s graces. My feet are now hitting the ground and it hurts. I am falling, touching my bared feet to a graveled path, tripping slightly. Then someone reaches out their hand again!

And I want to cry. I feel as if people think I am not intelligent, or perhaps not grateful, as sometimes all I can do is stare, hoping they can read my eyes. Please know, that my gratitude is so immense that I cannot put it to words. I cannot even put it to paper. It is larger than a shooting star veering across a moonlit sky. It is larger than a circle of people sitting around a fire stating what they bring to the celebration. It is larger than music played on a stage by someone dear. It is larger than a room full of powerful business people standing and sending energy our way. It is so big, so powerful, that I am filled with it!

During the meeting with the school, the question was put before us about therapies. Yes, she is in OT and speech, but will she be doing counseling? I don’t know, but it got me thinking about how Orien Rose was feeling. She is so incredible at healing, that sometimes I need to ask her how she is feeling about it. She won’t readily volunteer the information. It reminds me of her pain management in Hasbro. So I asked her what she was feeling. She told me that she gets scared sometimes that something is going to happen to her, something else. She is scared there could be another accident, not necessarily a boating accident, but an accident. She is happy she didn’t die, but knows she came close. She wants her own skull, not a plastic piece, but will be okay if she gets the prosthetic. She asked why Grandma couldn’t give her a piece of her skull. When we explained that Grandma’s wouldn’t grow back like hers would because Grandma was older, Orien Rose said, “then I guess the plastic piece will be okay.”

Orien Rose is amazing. I want to put my hand on her head, like a scene in Empire Records, and just say, “she is okay, she is fine.” Behind that, there was a lot of healing to be had and really, for us, there is healing still to be done. We have a few months left to retrieve what lies beneath the surface. Then there is Orien and I, and our healing. I need to fall apart some more. I need to open up some more and allow the broken pieces to purge, to rip out of me, to heal.

As far as the surgery, we don’t even know yet the procedure, what they will be doing. Plastics left a message saying they were ordering the piece and neuro’s last report was the split skull. Ahhh….I just want to KNOW. Both doctors are on vacation (how dare they…lol…). So, we wait.

And wait.

And soon, there will be an answer. We will know when the procedure is and what type they will do. Soon, we will be able to prepare Orien Rose for the next surgery, to talk to her about it, to walk with her through it. For now, we will party. For now, we will enjoy every moment, even as some feel raw. For now, we will show up and say thank you. We will accept, graciously, the help that has been offered to us. We will know, or at least try to, that we deserve it. We will open our hearts to it. We will stop creating the gremlins of rationalization. We will heal in many ways. We will learn to move through this crisis, not only for Orien Rose, but for ourselves. We have to. There is no choice.

Party for Orien Rose August 19th at 2pm

2007-08-03T08:03:00.001-07:00

You are invited to join us in celebration of Orien Rose,
in her fantastic journey so far.
You are invited to celebrate yourself, for your part in this!

Please join us on
Sunday, August 19th at 2pm
for food, music, and gathering with special guest

SONiA of Disappear Fear!

at Barbara's House (the Grandmother) in Middletown, NY
(call or email for directions)

Let us know if you will be coming and if you will be bringing people so we can prepare enough food.
Please pass this along to anyone you have passed any information along about Orien Rose to.
This is a Celebration of Life and as such, a great many people deserve to be honored!

We look forward to sharing even more energy with you,
to being in your presence, feeding you and entertaining you.
Please join us, it would mean so much to all of us!

Please also bring your drums, instruments and such as I am sure spontaneous playing will happen later on!
If you are traveling far, and would like to come, please contact us about staying overnight. There are a few options.

7-31-07 Getting Home

2007-07-31T10:41:00.000-07:00

7-31-07 Getting Home

I am sure there will be a series of writings from Starwood, but this is what I have for you today. Remember to ask me about our trip home specifically, if I do not share it with you. There is so much, so much I want to write. Like Lynn getting there, her voice echoing because of the acoustics in the field before others showed up to set up. And then Lynn’s voice echoing again as they packed out. I want to write about the trip out of Brushwood and the tire blowing on the way home and the adventure of finding good food to eat. The beautiful roads and dumping the water are not to be forgotten either, but I will start here:

This morning is a bed one for me. I have not left bed, except to go to the bathroom. I have answered some emails and done some business. I have taken some measures to release some anger, and now I am writing to you, refreshed.

Orien left this morning to get a follow up exam for his shoulder injury (for those that don’t know, this is a routine exam for an injury he got last year). It is a good day, as that part of things for him is almost done. It is a good thing, as the energy left going in that direction can be redirected. There will be some closure.

Orien Rose has already called her Aunt Kelly to find out when they can build her pirate ship together. Aunt Kelly was adamant that it happen with her, but I can only hold Orien Rose off for so long…lol…

Starwood, what can I say. I started writing about it when I was there, but found myself so in the middle of it, there was not much time. Perhaps it is better to reflect the enormity of it anyway, as it would have been a huge amount to take in.

Looking back, and I will try to do it chronologically, it was powerful the moment we arrived. Deciding to leave around Midnight instead of our intentioned Monday morning, we arrived at Brushwood at 7am Monday morning. Camping check-in was ready for us, we payed our extra fees, and proceeded into the campground that had left-overs from the week before. There were still people milling around, leaving Brushwood from the previous weeks festival or getting ready for another week.

We found our spot, and parked for a little while awaiting the rest of our group that was showing up. In the meantime, Orien and Orien Rose took a walk and found some friends. One of these people, a frog in his throat, came to visit us. We offered him some tea. As he sat across from me at our table, I watched him look at Orien Rose. He looked at me, he said with a raspy whisper, “she’s all right.” Then he started to cry, in turn bringing tears to my eyes. It was then that I began to realize that not only do you who haven’t seen her need to, but we need to see you. To be engulfed in such emotion was astonishing to me. It was big there, on the land. It was bigger than anything I was ready for.

So, I stayed in the campsite for a few days, meandering in and out for short moments. Orien and Orien Rose already taking it by storm, they came back with reports of their experiences, ensuring me that I should partake as well. I did, for moments, as I said. The love I felt was overwhelmingly pure. In speaking with another woman, who I have known for quite a few years (but not in depth) I realized just how big it was. As she told me of reading the updates, sharing them with her husband (who couldn’t take much in because of his connection to Orien Rose and playing in the pool at festivals), and crying, I began to open up, too. My heart felt so big, so powerful, so potent that I knew being near the people who have done work, said prayers, put the energies out there in so many ways was only healing to humanity as a whole.

The week went like this. As we did our festival thing, and introduced ourselves, a lot of people said, “I know you. You are Orien Rose, Orien and Christine. We have done work for you.” Orien, as he traveled the land moving from one place to the next overheard a conversation at one point that blew us all away. Orien overheard two women talking as he passed. Both of them just meeting each other, as introductions were made. They stopped their greeting as Orien and Orien Rose passed by. Orien heard one of them say, “that little girl was hurt and we did work for her, “and the other one say,”yeah, we did too!” I shared this in what little writing I actually did during the festival, but wanted to put it in here again. It seemed to be a common theme during our trip.

I don’t feel I want to write about Starwood in general, in the feel of it, the greatness and the sadness. I want to write about the healing, the meeting of amazing peoples. I want to write about basking in love, for love is the law, the only law as far as I am concerned. All can be conquered if a little space is given, control relinquished. Playing to each others strengths and forgiving perceived areas of needed growth is how we have been getting through this. It is amazing when we can step back and not need to be better than, but acknowledge that some are good at some things, and others compliment that. It was evident in the packing to go home when Tony made a comment about organization as Lynn was packing the truck. Each had their strength, they were allowing each other their strength and it was so penetrating that they shown because of it. Stress was put on the positive.

I have been approached on a number of occasions about how positive I speak. This does not discount that I have gone through the darkness and that there will not be darkness to come. What is evident is that you, all of YOU, have given us some of your light. As we lived in our own darkness, you have stepped up to hold your torches, guiding us, holding us, as the most basic of decisions needed to be made.

Orien and I stayed connected throughout the festival. In that, there was a pull to do what we needed to do. We are relearning a balancing act of our needs individually, together, and as a trinity. We are living in a triangle of that is constantly shifting. We are taking in the people who suggest to us what we should do, but more so who have taken our counsel. We have seen years of work manifest in moments, acknowledging our power, but staying humble in the next breath. I have no doubt that magic works, that prayer and energy manipulated works. I have seen things come together like no other time in my life, like no other powerful healing that I have been a part of. Twenty eight people gathered in hours to send energy to Orien Rose and to us, twenty eight people that numerologically equals ten which equals one. This may not make sense to all of you, but it does to me. It is powerful. It is renewing. It confirms that we are all connected mystically.

Many people confronted me about my writing, that I need to put it out there, that they are “addicted.” I see the power of words as I embrace someone, as I look into their eyes that say, “thank you for keeping me connected.” I have been drawn in ways to stay connected in the past, those that have manifested now (in community, people, words, cards, emails, phone calls, help with things around the house…), and I am seeing that my life’s purpose (it’s outlet) is getting bigger. I am being drawn.

As I started to open up this past week, my heart felt big. My energy was sent out to others in need, and the more it was sent out, the more it came back. Orien Rose was taken care of! So much so, that when she got away from us at Saturday night’s bonfire, there was someone there for her.

For me, it was a scary moment, over a thousand people dancing around a bonfire that you can see by the naked eye from space. It was a spectacular show of fireworks, fire spinners, dancers, drummers and people. It was a moment to get caught up in. Orien Rose did.

It happened like everything else in life, in seconds. She was there, we looked up to see the fire licking the moon, and when we looked down, she was gone. Frantically, Orien and I circled the fire, searching for her helmet in the sea of color. Others were circling as well, including our other children. One of us stayed at the blanket. Our circles got bigger and bigger and one of us went back to camp. After what felt like an eternity of searching, after Orien yelled at me in his attempt to keep me focused, after I had visions beyond paranoia, I returned to the blanket to find Orien Rose had been found and was safe back at the site. I broke, I was broken. After all these weeks of crying, praying, pacing, making decisions, I was broken. I fell into Lynn’s arms and cried, then put my blanket on and returned, dazed, to camp.

There I found Deborah, Emily and Orien. Orien Rose was already in bed and it was a good thing. I was numb, beyond numb. I felt as if I had been sucked into the ground and I could do nothing but stand there. I didn’t want to be touched. I managed a thank you to them all and made my way, in shock, to a chair. I didn’t know how much more I could do. I found myself in my head, wondering how much more the intensity of fear about Orien Rose was going to delve into my being. How much longer before I would feel safe to let go a little. How much more before I would just run away myself, because it was painful! I know what I said was that I wanted to strangle her, Orien Rose. That is not what I meant. It was so big at that moment!

What I meant was that, I knew if I saw her in that moment, I would only shock her by yelling. That I wanted to take my hand out of the fire, get myself together, pull myself out the ground and tell her she scared the crap out of me, but that she did everything right. In that moment, I wouldn’t have been able to do it. So, it was not an anger strangle, but a cry for a moment alone so I could pull it together. I did not get the chance to speak with her that night as Orien Rose was tired and in bed, so I had a whole night and sleep to compose myself with.

Deborah explained that Orien Rose found her, said that she couldn’t find us, and maybe we had gone back to camp. She asked Deborah to walk her there, knowing that she couldn’t go alone. When they got back and Deborah asked her if she could stay at the camp by herself so she (Deborah) could come find us, Orien Rose said, “No, I am not allowed to be at camp by myself.” I had already sent Emily up to check. Orien Rose did everything right. I was just beside myself and not wanting to make the situation any scarier than it already was.

In the morning, I was able to ask Orien Rose if she was scared. I was able to tell her that she scared me, and that she did everything right. Orien Rose apologized, not for getting lost, but in empathy to the pain she saw in me. It was a healing moment. Orien Rose is intelligent, able to get herself safe. It was confirming for me, rather than something that could have potentially been fatal to the independence part of our healing. Each thing has been a lesson.

The week went quickly. I was able to witness an alchemical fire where Orien Rose was the torch bearer bringing light to the circle and lighting the fire. In introduction to the evening, Imani spoke of miracles. It was fitting. I was able to sit with Orien, to cuddle, to drum and sing around a great fire laced with colored sand. I was able to dance around and around, eventually speeding up so that Orien was chasing me. It was energizing, and when I slipped and fell, I got back up and started running again. Lynn and Mary said it was so graceful it looked like floor work…lol…I just hope the guy who tried to help me up wasn’t hurt as I pulled away and continued, my momentum stopping for a fraction.

Orien stayed on, as I went back that night to sleep. He had his own work to do. Sometime in the middle of the morning, he let out screams that woke some with a start! It was powerful, and Mary woke up thinking either something was born or something died, not knowing it was Orien. Orien explained that it felt like the screams I gave out when Orien Rose was born, low, guttural, primal, coming from places and times past. A gathering of information retrieved from blood memory, ancient.

I fell in love, over and over again with Orien, Orien Rose, all of our clan there. I fell in love with the look in Imani’s eyes when she laughed as we told her what Orien Rose said about being stronger than an Oak tree. I fell in love with Elspeth, as her hands guided me to her bed to lie down for as long as I needed, safe. I fell in love with Nybor as he kissed my hand and Orien Rose as she pleaded over and over to go for a walk.

I fell in love with Lynn as she dressed for the evening, looking more beautiful than the dancers on stage. Mary, as she fell into a Mother Goddess mode, taking care of us all. Shawn and Bridget, perched in a chair together, eyes wide and happy. Tony, bringing some of the best tobacco I have ever tasted, stepping up to drum with Emily for a ritual. All of us together, for a moment, drumming around our camp’s fire, invoking only those with need or a good rhythm. Joe, coming this time as part of the family! We were there together. Our small community, encompassed all around by a larger community, as an even larger community continued on at home!

As we were gone, Athena’s did an event for Orien Rose, her Grampy gracing them with his stature. He said he had a good time, and we have yet to talk to him about it, though I am sure it will be good! I read some on Happy Buzzing about the event, and am excited to see the light that Orien Rose has brought to a larger business community. It gives me faith in business, in right business. I am in the most perfect place that I can be in, working with Athena’s to empower.

As we were gone, those who have continued to support are showing up at our door. We got home last night and had visitors this morning. I cannot stress how important this is to us. We need people now. We need people to come and spend time with us, we need people to sit on the porch, allow us to serve them tea, to connect eye to eye, heart to heart. You are showing up!

Orien and I, and Orien Rose, are venturing out as we wait. We are waiting for decisions to be made about Orien Rose’s skull. Orien Rose has expressed that she wants her own skull, not a prosthetic. We are not the experts, but one expert is saying it can be so. We would all prefer all original parts!

I keep thinking about the Secret (the movie). It is something we teach over and over about manifestation, clarity and will. It is something we have lived with, but it has been so clear these last two months (and yes, it has only been two months). We talked with Elspeth about it, how it reaches more mainstream populations invoking the names of ancient philosophers. I am drawn to them; Aristotle, Pythagoras, Plato, each with their own flavor. I am drawn to their ways of teaching, of asking questions to make the querent know of their own answers, rather than giving the answers.

All of this, I am not sure you want to hear about, but all of this such a powerful representation that has come from one tragic experience. The power of connection, of people, of openness has been birthed in so many lives and needs as much nurturing and care as Orien Rose does. This experience confirms for Orien and I that we are doing the right thing, have been doing the right thing, that we have opened ourselves to those who want it, and we are being rewarded with more potent lessons. I have seen too often the fear that breeds itself in isolation, the miscommunication in darkness. I have seen those, not afraid of the dark but afraid to shine light on the shadows. It is not living in the light, but not being afraid to face the dark that has gifted us with our ability to heal quickly. When one is afraid to come out of their comfort zone, their home and open themselves up to confrontation…this is where isolation, separation, and segregation rule. This is the task I have in life: to stay connected, to conquer the definitions of words like manipulation and confrontation and use them positively. Manipulation of energies to heal, confrontation to bring what is hiding into the light. This is my Purpose. It has become so evident in our struggles, the trinity of us, that connection creates healing. That moving to connect and moving towards the disconnect, both sacred, at the center lies healing.

We are moving through stages, Orien, Orien Rose and I. We have seen Orien Rose jump from the mind of a two year old to that of a seven year old, getting closer to the emotional state she was in before the accident. At the same time, there is a balance of the new depth of her. She is reading more, taking in more, recognizing patterns more. She is a little less abstract, but is compensating in ways that are so enlightening. Orien Rose is powerful, and this week she was able to express that power.

Many discussions have been had, and many were brought up to speed about their part in Orien Rose’s healing. What do we need now? We have about four months left to dredge up the stuff that lies right below the surface. It’s as if an opaque piece of glass lies over some things. It is hard to see them, but they are there, and once we retrieve it, the glass is clean and clear and the function is back. She has got it the next time a similar situation comes up. It is all there! We just have to work it out.

Teaching is big now with her. We do a lot of teaching, a lot of asking questions, getting her to find her answers. She couldn’t remember what an apple was called the other day. She couldn’t tell me what it was in the refrigerator that she wanted. So, instead of telling her what it was, I asked her to sit down, calm down and take a deep breath (as she was getting upset). I asked her what color it was, what shape it was, where it was located in the refrigerator. Before I could tell her what it was, she said, “Oh, an apple.” She got it, she retrieved it. I merely guided her there.

There have been moments of stress and crank. There have been moments where we have needed to tell her to lie down and be aware of the energy of her body. As I lay with Orien Rose in the camper one day before we were to take a walk she said, “Why was I sent in here again?” as if she were punished. I said, “you were not sent in here because you were in trouble, you are here to rest.” She said, “oh.” There has been no punishment, only discipline in its purest form, teaching. She is getting it. Instead of telling her to lie down when she starts to whine, we have taken to asking her what a better way would be. She raises her shoulders, takes in a deep breath and exhales with sound. Orien Rose is healing. She is amazing, her brain is amazing and she is extremely sharp. Orien Rose is so energetic, it is her body we have been teaching her to recognize as it tires.

This past week has been full of many amazing moments of rest, exhilaration, hanging out, just being. It has been a blessing, a gift of one of our friends, students, community healers, to be there. You are blessed in your giving, remember that! We have remembered that, and will continue to be a reminder.

7-25-07 writing done at Starwood

2007-07-31T09:13:00.000-07:00

7-25-07 (I am leaving this as is, from the writing I did at Starwood. The rest will follow as I am finishing up now)

We have been here since Monday morning at 7am. We decided to leave just after midnight, and make the ride in the middle of the night. Not knowing what the camper was going to be like, how fast it would go, etc…we decided that was the best decision. Besides, we were packed and ready to go and couldn’t wait a moment longer, we were so excited.

The trip was uneventful, which is always a good thing. We took note of some of the things with the camper that might need to be looked at and consider this a dry run for our trip across the country next year! We are doing well so far.

There were people at Brushwood on Monday, some leaving from the previous weeks festival, some like us getting here a day early to set up and chill before the festivities began. It was nice to pull in, to see Orien Rose smile and immediately make friends with the cone/gate keeper. She was out there, while we were registering, chattering up a relationship! It was so natural, it was so beautiful.

A few hours after our arrival, a majority of the group camping with us arrived bearing a few more children. It was great to see them all running around on the grass as we said our hellos and starting their unpacking. Camp was set up in no time, home for the week was established. It was the smoothest it has gone in a long time, the process of getting ourselves together. We are all a little tired, all of us having put a lot of energy into the last few months.

Monday, there was not a lot to do, as Starwood did not start officially until Tuesday, but there was walking to be had none the less. There were some who would need to see us, or we them as I am learning so lovingly. Orien and Orien Rose made their first tour of the place and I heard about all the people they said hello to. I was not quite ready yet. I reveled in the stories though, as person after person, story after story was relayed to me.

I was ecstatic to hear that Orien Rose was sharing herself with others, that she was beginning to realize the enormity of healing sent her way. She came back to tell me of the leather guy (who she still owed four hugs to as part of her barter from last year at Free Sprit). She was bummed about missing her ability to hold up her end of the barter and was so happy that he was here, now, and she could make restitution.

Just a little of the back story from last year: Orien Rose wanted a leather skirt and shirt (as all of us like to wear to the Saturday night fire), so unbeknownst to Orien and I, she began a mission to acquire such. Well, seeing as she didn’t have much money, it was definitely a shock to come upon this process as it had already begun. Orien Rose was in the middle of the barter, and I figured we would have to work something out as her parents. However, the barter was an amazing thing to watch as the leather guy asked Orien Rose what she had to barter. Orien Rose pulled some gum, seven dollars and change, and some stones out of her person.

The gum was immediately discarded, the seven dollars accepted and the rest of the payment to be determined. Each rock was gone over, as Orien Rose explained the meaning (cued by the leather guy), its meaning, its magical purpose and its place in her heart. She was asked to give him a few of the stones that meant something to her and she did. The final part of the payment was six hugs, but they had to be one each day, ensuring her visit not only for that festival, but for more to come as there were only two days left. I believe she has payed her debt in full! What an amazing learning it was for her, to have to define wealth, not in money but in knowledge and meaning. Wealth in exchange.

Others were visited, others special to us, and some we didn’t know personally. Orien is good at this, talking to people. It is how he heals. He and Orien Rose have a superb ability to put people at ease, to focus them. They have been on, what Orien calls, the “Thank You Tour.” This is still in the works, and will be for some time to come as we touch base, meet, thank and take in just what people have done for us, what energy and magic, healing and prayer has come our way.

Tuesday brought more of this, as more people arrived to take part in this great week. I ventured out for a little bit, but found myself wide open and not being able to be in the middle of it for too long. I was crying already as we bumped into another person who has graced us a number of times on our property and with mutual friends. We heard her tell her part in our story, and as she cried, so did I. I cried for the immensity of it, for the moments that others have taken for us.

Orien Rose, already familiar with the grounds, was making her way to every spot she absolutely could. She took as many walks as the adults around her were willing to take with her. She found herself frustrated as she couldn’t move as fast or as much as her body truly wanted to. Restriction in such an open place has been difficult.

Tuesday also brought the arrival of Mary’s sister and her son, whom Orien Rose loves to wrestle. The last time they were together, they wrestled each other almost non-stop for over two hours. It was beautifully energetic, and I could see it in both their eyes as they greeted each other. It was going to be as hard for him as it was for her. Boundaries were stated clearly, on more than one occasion, with many reminders to follow as the kids partook in their own healing.

Orien Rose had a hard time keeping it together when she got tired. We talked with her many times about a better way to ask for what she wanted (not whining), to take a deep breath and try to calm herself, and to be aware of the limitations to her energy. We talked to her about staying humble as those around her showered her with love. We talked about asking for help and let her know that sometimes, we were going to take care of it for her.

Tuesday was filled with conversations with our immediate clan about Orien Rose’s development and that the lessons she learned before the accident are still there, but that sometimes she needed to be reminded of them. When we spoke to Orien Rose about calming herself, she took to breathing it in immediately, but not before we brought her attention to the strategy which has worked so well in the past. We reminded the clan that it only takes a second for her to remember and that this part of her healing process, part of reprogramming and stimulating her brain.

It has been interesting to watch her interaction with others, to see how they react to her. The question was brought up a number of times about whether or not she is aware of her celebrity in our community. I am not sure that she is aware, or that it wasn’t always like this, or perhaps she thinks it was always like this. She understands that a lot of people have done work for her, but she is now seeing them face to face, talking to them, showing them her scar and the Mohawk she is now sporting under her helmet. I do know that Orien Rose was known before this, that is who she is.

Orien and I had a lengthy conversation with Imani about this. We spoke later on for some hours about the accident, and I found myself (and Orien) re-telling it in more depth than we have in a while. We spoke of the accident, of the healing process, of the length of time before Orien Rose walked on her own. As those of you who have read thus far are aware, the way we got Orien Rose to walk was to tell her, “The way to get to Starwood is to walk.” Later on, that turned into a question and response where we would say, ”How are you getting to Starwood?” and she would reply, “Walk!”

Emily and I discussed Orien Rose as well in some depth as she is catching up with the process. I reminded Emily that Orien Rose was re-doing the stage of about six years old, testing the boundaries. They are there, Orien Rose has them stored in her brain, but again she needs a reminder. As the need comes up, we do just that. Emily said that she hadn’t thought of it that way and that it made sense. She remembers Orien Rose fighting hard at that age. It helped Emily to process, and (I believe) help her to better handle Orien Rose. There is no anger here, merely a teaching process. Results were almost immediate.

Orien and Orien Rose visited with Elspeth as well, who didn’t know what happened. I was not ready to face her yet as I knew that it would be only moments before I opened up and started bawling, I could feel it. Actually, this was the reaction I was having to a lot of moments on Tuesday, so I spent most of the day laying in my hammock and finishing the last Harry Potter book.

Today, things have intensified as more people are seen, spotted and thanked. We don’t make it too far before we stop to talk with people about how amazingly fantastic Orien Rose is doing. In this, I realized that not only do they need to see Orien Rose, but we need to see them too! The love is pouring from them. Orien overheard two women talking today as he passed. Both of them just meeting each other, as introductions were made, they stopped their greet as Orien and Orien Rose passed by. He heard one of them say, “that little girl was hurt and we did work for her, “ and the other one say, ”yeah, we did too!” Neither of these women were familiar to him.

Deborah informed us that she has been able to let people know that Orien Rose is here. She sees the shock in their faces as some of them have not heard anything since Free Spirit. I believe she said something to the effect of, “They knew they were doing work, and got the update at Free Sprit. But this outcome (Orien Rose being here) was not a possibility they had been presented with.” We are here!!

We are here, and it is amazing. It feels like a relief as I travel through the days painfully aware of myself. Orien and Orien Rose sometimes take a back seat to that, as I have no choice to sometimes stay in my moment. If that means I need to cry, I do. If it means I need to lay down, I do. I heal differently than they do. Orien does well with talking to a lot of people. I need to do it in little bits, because I am falling apart. I am letting go and opening up even more, and this is truly amazing to me. There is no shame in falling, I have done an amazing job. Both Deborah and Elsbeth have vocalized this to me today, and it is something I so needed to hear.

I ventured out today as Orien Rose play in the children’s pavilion and Orien was at a workshop. Though I feigned looking into some of the shops, my real mission had been to find Elsbeth. I was finally ready to open even more. As I sat at her feet, talking briefly about the accident, I began to bawl. She told me how powerful I was, and though I can see evidence of my strength, it feels good to hear it. It surprised me. The surprise felt so good! I didn’t make it too long in conversation before I was brought into her RV and told to lie down on her bed for as long as I needed to. What an amazing opening of heart.

People have been tender, so tender. I keep hearing from people how this event, how Orien Rose’s accident and healing has reminded them that we are powerful healers, that it is our duty to heal. We are powerful together, in community, energy building en masse. We are powerful, as one little girl’s life lay in the balance and you all stepped up! Nothing else matters but the healing…of Orien Rose, of Orien, of me…of the whole community of people who can’t help but be affected by it.

7-22-07 Off to Starwood

2007-07-22T20:12:00.000-07:00

7-22-07

Well folks, I said I would try to get you an update before we left as we would be gone for a while! So, here it is:

Orien Rose is making a fantastic recovery. Orien and I are on edge still, and when she is out of my sight, I look for her, but she is having a blast. Orien Rose has gone into a pool, held by my mother and not allowing her head to get wet. However, in true Orien Rose fashion, she took that as a green light and jumped in the pool at another time not discussed. She got into some trouble by both Orien and my mother.

It is interesting disciplining Orien Rose. We are back at that stage again where everything needs to be absolutely, 100% clearly defined or we find ourselves with a lawyer. “You said I couldn’t do this…but you didn’t say I couldn’t (fill in the blank).” We are on our toes right now.

I can’t believe we have only been home for just over a week! It seems like we have been here for a while, and then in the same moment, we have not had enough time. I am looking forward to Starwood, as are Orien Rose and Orien. However, Orien Rose is bummed that she won’t be at the Athena’s “fun”raiser where there will be a mechanical bull! Though, she has been told over and over that she couldn’t ride it anyway, she still wants to.

Being a child with few limitations of the imagination, and abilities to explore safely, she is getting frustrated with her restrictions. I guess it is only to be expected, as she is not supposed to run, jump, swim, climb…all of these things some of her most favorite.

The past few days have really been about cleaning the house and packing for our trip. The laundry is done, Orien Rose’s bedroom is clean and rearranged (in expectation of the new puppy’s arrival when we get home), and the rest of the house is in fairly good condition. I am one of those people that likes to come home to a neat house, so I don’t have to dump a mess (camping cleaning) on top of a mess. It allows me a work space.

We tried to get everything done by yesterday, and of course it didn’t quite happen that way, but the majority was done. The rest we finished this morning before we made our way out to a graduation party. However, we didn’t leave without a visit to our neighbor. Her mother has just had surgery and she was there visiting, so we stopped in to say hello. They have all been very supportive, sending us emails and checking in and praying! It was nice to sit with them.

We got to the party a little later than we expected, but we got there in time to hang for a while. It was great to be there, to see Orien Rose playing with other kids. It was nice to sit with people from work, catching up and feeling at home. I hope that the graduate appreciates our gift…lol…I thought it was cute!

Leaving the party, we were on to the last excursion before coming home to accomplish the final tasks before embarking on our next adventure. Seven of us piled into my mother’s van with one person following behind, and off we went to Cornwall to see Sonia and Disappear Fear. As I sat in the chair on the lawn, listening to Sonia and Laura go through their set list, I saw Orien Rose dancing, sitting, moving, walking into the gazebo. I watched as Sonia smiled down at Orien Rose as she sat so close to the stage making her chocolate and sprinkle pizza. I thought about the last time I saw Sonia, at Blythedale and how far we have come since then and I cried. I listened to her play her songs and I couldn’t help but acknowledge that Sonia is a part of our healing process. She has become such an amazing part of it.

To see Orien Rose moving around freely across the lawn, to see her explore the world around her, staying in her own little world as she frequented ours with dance and song and laugh, was so exhilaratingly healing that I had no qualms about getting up and dancing myself!

Enjoy your week! Take each other as you are, and don’t forget to stop and breathe. As we travel this evening to take a much needed respite, we will think of all of you who have brought yourselves into our lives. You will be there with us as we take delight in the gift of another moment with our daughter, Orien Rose.

7-19-07

2007-07-19T08:03:00.001-07:00

7-19-07

I am trying in the morning this time to write to you all. It has been a busy few days, days of amazing recovery and healing on all our parts. It has been intense, emotional, physically painful and joyous. I feel as if we are all spinning, as if we were on one of those table top carousels where you wind it tight and let it go, watch it careen down the pole only to start swinging backwards until it finally evens out and rocks back and forth.

We are rocking now. Back and forth, we are dancing and holding each other, getting used to the rhythm of life outside the hospital again. It has been gentle, and as gentle it has been explosive. Tuesday, Orien and I had a screaming fight. I don’t even know if he was yelling, but I do know that I was. It was short, fast, and over. My body felt it so intensely that I stayed by the bathroom a few minutes as I was sure I would throw up. My hands and arms were shaking for what seemed like an eternity afterwards. For all of you Emergence peoples, I don’t know that I like being in my body so much…lol…it is intense, though I know it is the right place to be.

Orien Rose continues to amaze us. There are elements to her that were not there before the accident and I am not sure what direction they are coming from (nor do I really care at this point). Is she contemplative because the accident provides deepness or because she is more literal? Or both? I am not quite sure I know how to describe the changes in her. I think, that you would not even be able to tell the differences as they are so small, nuances really.

Yesterday in the car, Orien Rose said, “I am a lucky girl.” “Why?” we asked. “Because I stayed alive.” Orien Rose said. Orien then said, “I am a lucky Papa.” Orien Rose said, “Why?” He said, “Because of the same reason you said.” Orien Rose said, “Because you didn’t die?”

She thought that his meaning of “Because of the same reason you said,” was literally, “Because I stayed alive,” (her response). She didn’t get that he meant that he was lucky because she stayed alive. I heard her in the back seat, talking herself through it, trying to get a grasp on why she didn’t get it. There have been a few moments like this, so literal that I need to stop and ask her if she needs help figuring it out. We spoke with her about it in the car, but I could see how confusing, how much work her brain was doing. This part of brain function has always fascinated me (perhaps that’s why I ended up in a classroom with a number of children with Aspergers?).

I am delighted every time I see Orien Rose work so clearly. I am delighted when I see her surprise at something. I look at her sometimes, as if I am inspecting every inch of her face, her eyes and she allows it. Sometimes she asks what I am looking at, but most times she just looks me right in the eyes as I stare into hers. She is a powerful little kid, one that is teaching me so much. It hit me hard when Orien told me about his clarity in the water, the recollection of the moment when he realized that he could be losing his greatest teacher. Nothing else really penetrates when I can focus on that.

As I have stated over and over, we are getting back to “normal.” But, I don’t think that is possible. Our lives have changed, things have been broken (perhaps things better off broken) and discarded and things have healed. Our faith, strong to begin with, was re-ignited, a flame so strong, a connection so hefty, it has definitely allowed us some peace as we figure out our next moves.

Sometimes our next moves are spur of the moment, sometimes they have been talked to death that we just leave it be and come back to it later. Sometimes there are lists galore as we forget easily, and we don’t care at the moment that we are forgetting. It is what it is.

We went to a Renegades game last night. Now, I am not a big sports fan, but it was so much fun to be around people, to people watch, to see beauty everywhere. I watched a little boy on the big screen open his mouth wide when he realized he was up there! I watched a father and son, much older in their years take delight at the game and all that was going on around them. I watched a beautiful woman, seemingly bored, wake up as someone won a great gift at the stadium. That light, that hidden passion was amazing to see as it came to life. Then I realized something. I realized that fear is bred in isolation. Isolation is powerfully full of negativity, obsessiveness, and paranoia. That though I am social, and I have a lot of wonderful people around me, I am social where I am comfortable, where I know how to navigate. It was nice to be out of my comfort zone, to grow and connect in different ways. Orien Rose has inspired yet another gift (and of course, thank you Heather and Brendan for asking us to go!).

It was nice to see Orien Rose play with two of her friends that were, unexpectedly at the game. The mother of one of the boys (who was in her class) had been trying to connect with us while we were in RI (she happened to be there, too). We spoke about Orien Rose, but she could see for herself. The other boy had just gotten his black belt in Tae Kwon Do. We were proud; sad to have missed it, but proud. It was a fantastic night.

Orien and I got into bed last night late. We made more lists, discussed money, and connected gently. We were both able to stay present, even as Orien Rose tried to sneak her way into our room…lol…and we had to bring her back to hers. Eventually, she ended up in our bed.

I have been going through and amazing amount of pain, especially in my right arm. The night before, I took the third ever muscle relaxer I have ever taken in my whole life. I am not one to take medications unless absolutely necessary. It was bad. Last night, I ended up taking Ibuprofen. So, being as I don’t take much, I was foggy when Orien woke me up and said, “everything is okay, Orien Rose had an accident in the bed. “ Oh boy, not words I like to hear. He was gentle in the way he spoke, so my body reacted first to that gentleness and realized he was telling me she peed. Nice…okay, just get out of bed and move. He took care of the rest.

I ended up on the couch last night for a little bit as Orien lovingly took care of the bed. It was another moment of brilliance for all of us. To be so taken care of, each of us by each other.

Today, we begin packing for Starwood. As some of you read, we put the idea of the RV out of our minds as we just couldn’t do it at the moment. Well, yesterday, we rolled in with the RV that had parked itself down the road with the exact specifications I had put out the Universe sometime back. It was amazing how it came about, and a story for another day. Let’s just say that the people were right, the RV was right and the situation presented as another chance to further our future dreams. We WILL be going across this country next summer! WOoooohOoooo!!

I believe that you will get a post from me before we leave, however I will not have internet access on site. Which means that you will probably not hear from me for a week. Please do not abandon us however, as we venture to a place that was made possible by your healing energies! We will take all of you with us, all your love, compassion, energy. Each piece of you that you gave up for us will be cherished, honored at the fire, in a drum, as we breathe and sleep. Each time we hear about energy raising, healing, the power of something collective, we will be rooted in YOU. Thank you!

7-16-07

2007-07-16T21:56:00.000-07:00

7-16-07

Though technically, it is the 17^th, I haven’t gone to sleep yet and it is still early in this next 24 hours. The past few days have seemed fairly bizarre to me, almost surreal as we acclimate to our home, a seemingly foreign place. The smell is different, the air is different, the stuff is different.

My father-in-law arrived Friday late morning. It was so good to see him. Orien Rose has been asking about it for some time, knowing he was in CA, but asking none the less. It was good for her to see her Grampy. We visited my mother’s, but I think I already wrote about that dinner with Karen and Steve.

Saturday I went to the Emergence group, not sure how it was going to go for me, and very nervous. I am not quite sure what I have learned (though I already submitted my thoughts on that in my Homework to the group, so won’t write about that here, as it wouldn’t pertain to a lot of you), but I know that I am feeling a lot.

It seems that my grasp on things is starting to fall apart. This, I am told (and know somewhat) is normal. I was reminded in conversation of soldiers who fight well and then defecate themselves afterwards (and of course this is quite paraphrased). I don’t think I am going to degenerate that far…lol…but I definitely feel an unwinding, as if Shiva is doing his dance standing on my head. I am still in a very magical place, I can’t help but be there, which intensifies everything, every event, every movement, every placement of people and things in our path.

To me, this means that reaching out is even more important. That as the intensity of the traumatic event is dying down, the intensity of the healing for us is amplified. I feel it in every cell of my body, it permeates my thoughts and I look around and find I am sometimes lost. I can’t do things that came easy to me before and I make no apologies. This is where I am. Things just can’t be that big, that imminent right now.

Sunday was a weird day, a day I thought I would get a lot done in. Orien left for his men’s council and I had errands to run and parties to go to, none of which happened. Shortly before Orien left, Orien Rose went back to sleep. I figured she had a stuffy nose and she was probably fighting a cold. Later, I was to find that I was correct as I took her temperature. It came in at 100.8 degrees. I panicked slightly, wanting in one moment to bring her to the hospital and the other to sit and wait. I chose the, ‘get to bed, drink some liquids, eat soup, take a bath’ route. It worked. We didn’t go to any parties (though we definitely wanted to) or run any errands. Instead we stayed home, watched some movies in bed, ate snacks and drank tea. It was a good day. Orien Rose, when I told her that we probably were not going to go to the party said, “oh, I wanted to go, but you’re right, I shouldn’t go out if I am sick. I don’t want to get anyone else sick.” How sweet she is…

I was losing it by the time Orien got home, sitting in my own head, no one but me and Orien Rose. It was lonely, but healing none the less. This morning was not much different as I was so uncomfortable in my skin. Finally, after a late start, Orien said he was staying home with me, rather than working. It was a good move!

My aunt came over this afternoon, bringing with her information about the fund she set up for Orien Rose and us. There were cards, letters, empty envelopes. There was a rose petal from Lourdes. Orien Rose opened them up, leaving a pile in disarray but all the happier for it. We, Orien and I, reorganized what we could while looking for the envelope that matched the letter about the child with autism who is non-verbal. Right away, Orien thought about sign language. We talked about it. We talked about the amazement of it.

It was nice to have my aunt here. It felt like a time when my family was all together, before “the break.” It felt like a time when I was taken care of, that worries were not for me, that my family was together, happy in all its color and awkwardness. It was refreshing for the moments it contained. Orien, my aunt and I sat at my table talking about our futures, our now, our past. I got to talk about school and work. Orien got to share some of his dream. Orien Rose got to play hang man.

We also talked of the kindness of friends and strangers alike. We talked of all the people that Orien Rose has touched, how people read her blog and are captivated by it. I am in awe of the readership and the energy spent during your days to read her story. It was a good afternoon.

From there we ran a few errands, not a lot, in preparation for next week and to pick up some food for the house. When we got home, I prepared to go out and do my second party since Orien Rose’s accident. It was refreshing to go out, though my sense of urgency wasn’t there. I didn’t hyper focus on getting everything just perfect. I found that the preparation that has served me these last few years proved to be a good boon. I was able to collect, rather than create, my stuff and get it together. I am a strong business woman, running a successful business and this moment solidified that.

As I got into the car, I had another moment of realization about how tired I am. I had fun at my party, though, and it felt good to get back in the swing of things. I am moving slowly, at a pace that will not burn me out. I am allowing for the dance to unwind and to keep it steady. I am aware that we are ALL healing, Orien and I a lot right now.

In saying that, there are some things that are so forgivable, and there are some where I have reclaimed who I am. I have been woken up. Things in me have healed as the Warrior and the Buddha have taken there place in me again. I am fiercely protective of my family, yet gentle enough to ride waves of forgiveness.

Tonight has been hard. It is getting a little harder. Now is the time we need people. Now is the time we need visitors to come to our home and sit on our porch. We are doing things that we normally wouldn’t (like go to a Renegades game). It is an interesting thing to me, the fun there is in connecting in ways I have never even approached before.

My mother has been making fairies since she gave one to Orien Rose in the hospital and Orien Rose asked her to make more because she wanted to “collect them.” Today my mother sent me the pictures and descriptions for the ones she is putting on eBay. They are too cool! I can’t wait to see them up there, and I will let you know when they are.

Orien Rose is teaching me so much. She asks for people, she is contemplative, she is funny. Orien Rose is drawing pictures more now, though she tires easily of it. She is reading so well and has actually taken to picking up magazines and books more. She is singing more than she ever has, songs that I had no idea she knew. Orien Rose is growing rapidly. She is curious about her healing, letting us know she can now feel her eye under her eyelid where she couldn’t before. She has more motion and range of movement in her eyebrow and tongue. Her nerves are starting to heal in her face. She is feeling more on her cheek.

As we await a call from her surgeons, we go on doing what we need to do. We start her outpatient OT and speech this week and her Dilantin levels are good so we don’t need to adjust it right now. Each day is a new adventure; sometimes so small and detailed and focused we can’t help but feel whole.

Tomorrow, we will try to clean some more. Orien will go to work. I may run errands. These are our plans, but our healing seems to take on a time of its own. We know, in the moment, (most of the time) what we need to do. Tomorrow will be another day healed, another collection of moments that we are blessed to be present in.

7-14-07 Orien Rose sleeping out

2007-07-14T06:03:00.001-07:00

7-14-07

Wow, the last few days have been amazing! I realize this morning, as I sit in a comfortable, normal, quiet space, that I need to have the same veracity with my healing process and what I put out to you all (and the Universe) as I do with Orien Rose’s healing process.

I know a few of you are ahead of the game on this, as I get emails about the work you do, the prayers you are praying and how they include both Orien and I. I have a vague sense that we are healing as well, but it is becoming more evident as separation of parent and child ensues.

As I wake up this morning, I realize my body needs to heal too, and I sit here thinking about how to talk about it. I don’t want to tell you of the pain, rather I want to use positive terms. I am not talking about positive and negative as in good and bad, those are not the definitions I have. I view positive as a pathway to healing and health, an attitude, fully acknowledging that every time you light a candle you cast a shadow. Being a photographer (in my past life…lol..) I know the power of shadows. So, what I need to do right now is cast a lot of light and minimize the shadows.

So, here I am, in my big red bed, early in the morning before everyone is awake. Here I am sitting up, looking out the same window that inspires songs, Orien sleeping next to me, slightly snoring. As I write, I am visualizing my shoulder loosening, my neck stretching, my legs and feet able to carry me farther than I could ever imagine. As I sit here, I visualize my lungs clear, my belly full, my hormone levels balanced and soothing. My arms are catapulting words to the Universe, my mind steady…power, strength, health, endurance, balance, clarity…

Orien, I am not sure what he needs, though I am assuming some of the same. His faith is amazing to me, and I draw strength from that. We have spoken often about how this event has changed our relationship, how each blessing has made us stronger, how we are seeing the work (that we sometimes questioned) we have done manifest so clearly. We have given, there is no doubt of that, we feel it our duty, our purpose to do so. I know I never even imagined what would come of that, besides our sense of service. Service…it’s such a funny thing…the more you give, the more that seems to come back. The more faith you have, the more solid your peace. I know that all of you who have given so freely, so willingly, almost as if you did not have a choice…I know you have already received from it. I know because you tell me. I know because relationships (between parent and child, partners, friends) have changed in your reading and being a part of our story. This is so good. There is a lot of greatness that you share with us. This keeps us going, too. So, please, don’t stop telling me of your stories. Storytelling has been an art form through the ages for a reason. It heals.

I found myself speaking, once again, about the networks of people last night at my mother’s house. In my mind first way, I want to collect all the emails, cards, and messages I still have and make a tree of it. I want to view it on paper, connected…but I know it would be the size of Yggdrasil, the World Tree, or damn near close is what I feel. The network of people traveled across the continents, distance having no stopping power over the amount of energy pouring in, making its way towards us like a tidal wave. Some things seem so small in the wake of it, I feel small in the wake of it (or maybe so right sized!).

Today, I celebrate 13 years of sobriety. And I almost mention it as a side note, but my story wouldn’t be complete without it. Orien and Orien Rose’s story wouldn’t be complete without it. I celebrate the freedom from a life that seems to be another lifetime ago, one that has little power over my confidence today. There was a time when I didn’t have much grace or dignity. And I think about the last 13 years, the decisions, the people in my life. Orien Rose knows a different person from the one I was growing into womanhood. Orien and I met during this time, embraced each other, made a decision to spend our days (and nights…lol..) together, and to bring Orien Rose into this world.

I think about this time of the year, a time when Orien and I realized we wanted to be together in a ritual sense. We wanted to have a child. It took a while to conceive Orien Rose, a lot of magic and prayers, a lot of diligence in our thoughts. She is truly a miracle child, the doctors saying they have no idea how I conceived…And we want another child, always have. When it is right, we will.

But I am getting away from myself. All of these emotions are stirred in part because Orien Rose stayed at my mother’s last night. Orien said in the car, as I was beginning to tear, that “there is Orien Rose’s healing and then there is ours.” This is part of both of that. I forget, or maybe I am now feeling, that there is healing for Orien and I do to, separately and together. I am so in love with Orien right now, so in awe of the capacity we have to do this together, our strength.

My mother, when I asked her how she felt about Orien Rose sleeping over, admitted fear as well. We spoke about clear boundaries and rules, about medication and things we are still watching for. We spoke about where she would sleep and where it was going to be that Orien Rose could take off her helmet. We spoke about Abigail, and having her niece over for the first time since the accident.

All of this followed an amazing dinner at my mothers, where Karen and Steve and Jessica made an impromptu decision to stay. I am so glad they did. It was a great night, it was funny. We laughed, we talked. Karen and I got to talk about work. Steve and Orien held their (uhhum..their?) puppies. We talked about family, upcoming events and parties, trips, vacations, more family. We ate some great barbecued food….it was so healing.

My father-in-law had arrived earlier that day, another moment of healing for all of us. He had left for CA shortly after Orien Rose could sign “I love you.” He had not seen her since she couldn’t open her eyes in the hospital. Orien Rose was fairly coherent at the time, but she couldn’t move much. She had been asking for him, and he needed to see her, too. It reminded me again of the, almost imperative, importance of continued visitors, both for us AND them. There are some who have seen Orien Rose in increments along the way, and then there are some who had only seen her in the beginning, their picture hasn’t updated. It is wild to watch these people as they come to say hello and check in.

Even Sara, who was with us for almost the whole Hasbro stay, had not seen Orien Rose in a few weeks. When she stopped by the other day, in between school stints, she was amazed and overjoyed. You could see it in her soul. For all her exhaustion, Sara was relieved to touch Orien Rose, to see her up close. I can’t imagine the picture those who visited early on still have. Be assured that if you are stuck with a picture, it is better to just come and see Orien Rose! She is miraculous.

I am so inspired right now. I know that our healing will continue. I know that people will continue to show support as we continue this journey. I know that our friendships have gotten deeper, that we have made new friendships. I know that relationships are there, waiting to happen. I know that there are so many people who have courageously kept up with Orien Rose and us as well. This has not been an easy story to tell, nor can I imagine and easy one to read. Those who read, I am sure, are as compelled as I am to write, and I thank you for it. Orien Rose’s journey will be a lifetime, and this event will definitely mark a lot of it (at least for me, and probably Orien, too). I know, however, that she is going to look back, as will we, on the faces who have kissed us…the bodies that have hugged us…the letters that have come in…the pictures along the way.

We (and I mean me and my mother’s side of the family) are documenters. We are a type of people that make beauty with what we are given. We have been given a lot…so much that you have made it easy to do so, to find the beauty. We (Orien Rose, Orien and I) have lived almost entirely in it and find it euphoric, or at least calming. You have helped us to do so. I know that years from now, we will still be feeling the energy sent, because time and energy work differently. Thank you for your continued support, for your energy, for your help and grace. Rather than dread the continued journey, the upcoming parts of reconstruction (both physically and spiritually), we forge ahead with confidence, knowing that if we falter a bit, there are hands to catch us. There is love to embrace us.

So I will continue to keep you informed for as long as you will read it.

7-12-07

2007-07-12T17:42:00.000-07:00

7-12-07

It’s late evening, and I am finally sitting down. We left this morning at 7am to begin our day of final appointments for this trip. The cottage is thoroughly cleaned: kitchen, bathrooms, vacuuming, laundry, clean beds, etc…I am ready to sit for a moment and reach out to all of you as you have reached to us.

This trip has brought with it many healed and healing wounds; Orien, needing to drive the boat back to the house, re-living one of the scariest moments of his life. Me, sitting in the same spot as when I first experienced the news of my daughter, Orien Rose, well…wanting to visit every place possible.

Monday began with a visit to the plastic surgeon, a visit I wrote about. Just to recap, though, plastics does not think that Orien Rose has enough skull thickness to do the split. However, when Wednesday rolled around (and I will get some of Tuesday in, too), Neuro was saying that they don’t see a reason why it can’t be done. I know better than to get in the middle of that!!

Orien and I would love to see Orien Rose with the least possible surgeries. We would love if it turns out that her skull is thick enough to split, therefore both pieces thickening together, even, balanced. We bow to the surgeons, who know infinity more about the inside of Orien Rose’s head than we do!

We requested that the possibility of the surgeries happening before school starts be considered. All parties agree to consider this. However, it will happen when it is supposed to. There is talk of mid to late August or the beginning of September. Orien and I are not fretting over this. When the next surgery happens, we will be ready, healthy and together. Our union is strong! Our time can’t be a factor here, and we trust the surgeons.

Before I get to today’s visits, I would just like to say that we spent a lazy Tuesday morning and afternoon at the cottage. We then took a ride to Newport, where we walked around for a little bit, visiting some of our favorite spots and then eating a late lunch. At first, I was on edge. Orien was in public now (and by the way, the mall…Orien Rose didn’t even notice people looking at her, and we followed her lead), and outside. The heat and sun posed a new challenge as she is photosensitive due to her medication. As well, Orien Rose’s scars can’t be in direct sunlight. So, she sported an umbrella, just like a parasol hitting people the whole way down the side walk. Oh well! Lol… That, and her 50 SPF sunblock made us feel okay.

Wednesday morning was even lazier, with me staying in bed until almost noon. Orien and Orien Rose left early to go to breakfast (at a restaurant with a clear view of the accident site), then came home and did some fishing. It was a catch and release day, but nothing was caught anyway. They had fun, and I got to relax my brain with a little Anne Rice (it seems I have taken back up the habit as I need something to make me not think).

We went to see the neurosurgeon, where we got a great prognosis (expect 100% cognitive healing and test her again in six months is what they said… the rest I have written above, slightly out of order). It was great to see the resident and the surgeon.

From there, we went over to Athena’s, stopped in for a moment, and got some dinner across the street. When we came back we were told that we could not leave without saying goodbye (as if we would…lol). We all entered the building to people’s hugs and kisses and WOWs! Orien Rose was a Star for a moment. Seeing the flyer for her fundraiser, she expressed interest in going. However, we will be at Starwood at that time collecting some more normalcy to help balance us out.

It sounds like it will be an amazing event, the Athena’s event, and one I am drawn towards as well! Orien Rose wants to ride the mechanical bull, though we explained there is no way she could do so. I want to see all you beautiful people who continue to bless us with love, courage, peace, and community. We cannot be there, as we will be feeding our soul at the Starwood retreat, but my father-in-law will be there! He sent me a link to the Star Wars folks who will be there, asking if I knew about it. I have to say, that I had not realized the extent of the event! It is so amazing, so powerful to have such a network of support.

So, last night, I decided to stay for the BBW. It was great to sit with Alison and Linda, to laugh so hard I almost peed. Then, to stand outside talking about business, mingled with conversations of balance, strength, power, and improvement was so nourishing for me. It is hard for me to be vulnerable, but at Athena’s home office, I was safe. In the presence of powerful women and men, I was safe.

I could see the relief in their eyes, the office staff, the Goddess’. I could see the joy in seeing Orien Rose live and in person. It is one thing to read about her progress and a total other thing to be in her presence. Orien Rose awed everyone, I am sure. She went right into the board room, took a seat, and there was nothing keeping her from being a part of the meeting she was invited into. Orien Rose visited Jen’s office, but not before she got some snacks first, where she knelt and gave a blessing to Jen and her family in thanks and to give back. Orien Rose left a beautiful Lapis bear on the altar encircled by a beaded snake for Rea that Orien left. It was a great moment to be able to give back a blessing to those who have given so much, and continue to do so, to us.

I guess that brings me to today, as I am getting distracted and needing to leave my break soon to finish up cleaning. It has been a long day, an early day after a late night, a day filled with appointments, but so much fun none the less. We left this morning about 7am to go for another CT scan. This is the one they will use to figure out how to reconstruct Orien Rose’s skull. From there, we went up to the 5^th floor to say hello to people.

Orien Rose was greeted there with many smiles and “hello”s as well as inquiries about how she is doing. We picked up our phone charger, talked about the rehab a little, gave some hugs, visited the room she stayed in, and rubbed the head of the glass dragon at the end of the hall. It was a great moment to see Orien Rose, independently, walk to the dragon and put a hand on it.

Then we went over to the brace shop. We originally thought we would need a new helmet because Orien Rose’s is getting a little big. But with a few minor adjustments (and some vent holes) we were good to go!

We had time to kill between the brace shop and the ENT appointment, so I took Orien and Orien Rose to the Providence Place Mall. It was wild to show them something about RI! Orien Rose got a new pair of flip-flops (and I couldn’t help but getting a matching pair) and we went to eat at the Cheesecake Factory (neither one of them ever having the experience before). Then back to the hospital we went to finish up our appointments for the day.

Before getting back to the cottage, we had one more stop to make. On the way back, we drove through Tiverton. And of course, we stopped to visit the fire rescue crew. Orien Rose had a blast, getting into the vehicle that took her to the hospital. We, nor the chief, were sure she would be okay with visiting that piece of the puzzle, but it didn’t take much convincing. No sooner was it suggested than she was out the door and only moments later we heard the sirens…lol…another moment…

Orien Rose is getting antsy now, as we shut down the house and I have taken more time than I planned to write, so for now, this is it. There is much to process from the past few days, and it seems as if time has played tricks yet again….

7-9-07 Back in Rhode Island

2007-07-09T20:35:00.000-07:00

7-9-07

What can I say, but that it has been hard to write so far today. I have run from it many times, thinking I would sit quietly, get out some thoughts and move on. Today was not to be like that at all.

We arrived in RI last night, anxious and tired. I tossed and turned, Orien Rose was a little cranky, but fast to sleep again, and Orien was contemplative. He didn’t say much, Orien, though I knew he was glad to be at the cottage.

This morning we went to the plastic surgeon’s office only to find out an hour and a half later that we were in the wrong place (yes, we called yesterday to confirm with the answering service and we called this morning, AND I called the hospital). Regardless, we saw plastics at about 9:30am, two hours after our appointment time. During that wait period, Orien Rose’s pediatrician called and needed me to call her back immediately. So, I did…and was put on hold. Whoo….

Finally, I got through to the pediatrician who told me Orien Rose’s dilantin level was too high and I needed to call the neurosurgeon to get an okay to lower the dosage. So, I called, got a machine and left a message. Eventually, we were scooted into the office of the plastic surgeon and taken into a lovely room in the back where Orien Rose climbed on everything and touched what she could. During this time, I tried the neurosurgeon’s office again to be told that no one could get back to us until after 1pm. During this conversation, the plastic surgeon walked in and began his exam (of course). I would have to call the pediatrician (who wanted to speak with us again after we spoke to neuro) on the way back to the cottage.

Plastics was pleased with how things were healing. There are a few spots on Orien Rose’s scar that are having a harder time healing. It is possible there is a stitch poking through on her face causing the irritation. Most likely, it is because of the juncture of four spots that Orien Rose’s head is irritated and in need of faster healing in the top of the head spot. The stitch that was sticking out of her head a few days ago has disappeared, making the poking around go a little more smoothly.

We discussed the next surgery, which of course is up to neuro when it happens. During the next surgery, the piece of scar by Orien Rose’s eye will also be re-opened and fixed as it is beginning to bulge and pull on the skin around the eye socket. As for the cranial reconstruction, the plastic surgeon explained the procedure he was most likely going to do. Unfortunately, at this time, Orien Rose’s skull is not thick enough to split. The last surgery required some harvesting of pieces of her skull for the facial reconstruction and the sinus packing. Therefore, Orien Rose will receive a porous synthetic piece to replace the missing skull. Orien Rose’s bone will grow into this piece, allowing her to not have to worry about another surgery for quite a while. There will be no need of a helmet afterwards.

It is the eventual hope of the plastic surgeon that Orien Rose’s skull will thicken and grow and be harvestable in the future. So, we are not done after this next surgery. We have at least one more, way in the future, to look forward to. For now, another CT scan will be scheduled (for this week), imaging will be sent out, and a piece matching the piece missing from Orien Rose’s skull will be manufactured. It is all quite interesting, though Orien Rose did express sadness that she had to get a new piece of skull. She wishes she had her old one.

Later on in the afternoon today, we met with the environmental police who investigated the accident. They brought the boat back to us at the launch, where Orien put the boat back in the water.

Orien Rose, before the boat went back in the water, went over to check it out. She was bummed that there was no blood. “Not even one drop, huh, “she said. She searched, as I watched in amazement at her curiosity. Orien Rose climbed in the boat, sat in the Captain’s seat and said she wished she could go for a ride now. We explained that we would have to purchase a new life jacket as hers was cut off. Of course, she wanted to know why it was cut off, so we explained.

It was time to leave Orien and the boat, though I did so with trepidation. I knew there would be some intense hurt. Orien Rose, as we left, touched the blade of the engine lightly, looked at me and said one more time, “not even one drop?” Man, oh man!

Orien Rose and I drove back to the cottage and waited for Orien. He arrived not too long after us, and I could see it already on his face. He was not okay. Driving the boat, he kept seeing Orien Rose fall off of it, over and over again. This is his picture, I think. Mine, the one where the bandage falls off of her face in the ER.

All I could do was listen. There was no ability to heal and make better here. It was a “just be” moment. I couldn’t be there with him, I did not see the same things, but I could try to be.

I am going through my own stuff as the month passes, so it was hard not to get up and walk out of the room. It was hard to just sit and listen, but I had to. I owe this process that much. It is BIG. His stuff, my stuff, and Orien Rose…who, although she is healing so amazingly quick, is still racked. Touching her, sometimes, I have to remember that she is still bruised under the surface, that she is still sensitive to touch. I stroked her arm today, and she jumped. I put sunscreen on her, and she complained of it hurting her as I rubbed it in. Orien Rose is still very much healing!

We are all still healing. I think Orien and I are starting, as time begins to encroach, to realize that we have also been through an ordeal, an initiation (the kind that life throws at you). I am not sure how we will come through this, but I know that we are strong. I know that each day we are reminders for ourselves. We are struggling right now to keep it together, but we are doing it. We are interspersing the time we need for ourselves, together, alone, and as a whole family. We are doing it.

Our bodies are waking up again, realizing as well the amount of stress that seemed to elude us in the beginning. My body is in bad shape, it hurts in places that feel ancient, feel as if they existed in a time before I was truly aware. My mind is tired, and it is trying to think about plans for the future. I have a vast amount of information that I need to help me make a decision about September (do I go back to school? Work? Internship? What about insurance? Will it matter what year I take off, if I take one off? I am only a year away…a decision that seems easy to some is hard right now for me, a decision I was so sure about…I feel really stuck about now) but I can’t seem to get it out to the right channel. I need to process this with someone who can help me put the pieces together, because they are so scattered.

So, we are in RI…we are here, sitting and sleeping at the cottage. The last time I sat here, I blogged about my connection to this place on MySpace, about being a “Mrs. Laplante.”. I was reminded of this in the hospital, about how eerie that blog was just sitting out there while people knew what was going on. So, here I sit again, pondering my connection to this place. Writing in the room that I was sitting in, the same position I was in as the car drove up to inform me of this tragedy, Orien and Orien Rose somewhere else (though they are sleeping upstairs this time) and my body is remembering.

7-7-07

2007-07-07T06:17:00.001-07:00

7-7-07

What a lucky day! We woke up this morning, all of us, in the Big Red Bed! Yesterday, we left Blythedale and got on the road at 7am. We were supposed to leave at 10am, but because Orien Rose needed her dilantin level checked and Blythedale wasn’t going to do it, and she needed her dilantin by 8:30, we needed to get to her pediatrician by 8am. So, we left at 7am. It was such a great moment, the three of us walking out the door.

We left through the back door, letting the rock that holds it open fall to the side, knowing we were not in need of getting back in (we have moved our stuff out to the car through it). The sound the door made was one of triumph, of nature greeting us as we walked through the grass.

Orien Rose, as we got to the car said, “at least I get to get IN the car this time.” Whooo. We were going home! But…we had to go to the pediatrician first. There, it was a circus show, where six people had to hold her down to draw blood. I am sure she was feeling the tension that Orien and I were feeling…just wanting to get home. Orien Rose is a pro at getting blood drawn. She has just had it!

So, we arrived home, where we immediately (after unpacking some of the car) got into the big red bed. Orien fell asleep, I couldn’t (so I got up and started cleaning and straightening and trying to make things fit), and Orien Rose got up and went into her room. While she was in there, she got into her bed, turned on the TV and laid down to watch it. However, this was not before she stocked up on some snacks. Normalcy at its finest here.

A few hours later, I could no longer take being in the house, so we went to the store to get some essentials (it is hard to go to the bathroom with no toilet paper!). Shortly afterwards, we embarked on the next step of recovery; going to my mothers. Orien Rose said, “I know the pool is going to haunt me. I want to go in it, but I can’t. I don’t want to see it.” She did well as the other children made their way into the pool. She played with a friend, who stayed by her side a lot of the day. The other children responded so well to her, flocking around her as dolphins do to their babies. When Orien Rose ran, Abigail reminded her to stop. When Orien Rose sat on the couch, where we allowed her to take off her helmet for a few minutes, Monique was there to make sure she didn’t get off the couch without it. They did so well, Orien Rose did so well.

Orien Rose did stay inside by herself a lot of the time as she was conscious of being in the sun and not going in the pool. At one point, she put a towel over her head (under her helmet) to mop up some sweat. For the most part, she played with her new puppy (who will come home with us after Starwood), who is so cute. She realized that the people there, were there to see her, and she let them see her scar and made sure to acknowledge them. She was definitely a little more contemplative, aware, then she ever has been. It was good to see her with the kids, playing, doing the normal stuff (of course with the pool, swings, trampoline, etc…off limits). She did so well. I am so proud of Orien Rose.

Today, we will go shopping, something Orien Rose is looking forward to. We need a few things (shelves, dog crate, etc..) and are looking forward to being together today. We will be going out this morning, and will be home in the afternoon. After that, we have plans only to stay home. Perhaps a short visit to my mother’s again, but today is on the fly, going by Orien Rose’s (and our) energies. It will be interesting to see how Orien Rose handles the helmet with the people in the mall. Last night, it was not an issue! Orien Rose absolutely amazes me.

As far as updates, I will try to keep you all involved in our story. I am just not sure how often I will get to write now. It has been a great release for me, one that I hope will stay (as I have not written like this for years). At this point, we will leave on Sunday to go back to RI for some follow up exams and to discuss the next surgery. As we meet with the surgeons, I will let you know what they say. We will be returning to NY on Thursday. People have stepped up once again to help us take care of things. You have all been so amazing!!

On the last day at Blythedale, I got a call from Orien saying that Dr. Duncan (the neurosurgeon) wanted to ask us for a favor. So, I called back the number he gave me and spoke to a woman from Lifespan (the amazing network they have in RI). She would like to write a story on Orien Rose for their newsletter. She told me that she spoke with Dr. Duncan and found out all the medical stuff. She asked if Orien Rose was speaking (to Dr. Duncan), walking, etc? They told her to watch the video. She told me, she came back from lunch dumbfounded! She couldn’t believe it. Orien Rose is definitely a miracle. I look forward to reading what she writes (and she told me, I have every proofing right!).

The doctor, when talking to Orien was conscious of our desire not to be public in the beginning and said that he would stop it right now if we wanted. Orien said that was fine, we would be honored to be able to give something back. In the middle of it, Dr. Duncan said, “wait, how is Orien Rose!” Wow, what a relief that, and the conversation I had with the Lifespan PR person were. This was so different from Blythedale. It gave me hope in the medical profession, as Blythedale was making it hard to remember the miracles we are experiencing.

You all know how I have felt about the rehab, and I am glad to be out. It would be unfair, however, not to mention the amazing therapists. They truly made Blythedale tolerable. However, if Orien Rose needed serious medical care, we would have found a new place immediately. The therapists truly did an amazing job with Orien Rose, laying a great foundation for us to continue. They gave us tools to go home with, as it should be.

Thank you all for your continued support. As we arrive home, acclimate and need to pick up again…well…it is nice to still get your visits, emails, phone calls, hugs, and kisses. As routine, real life, and all those wonderful things that go along with daily living commence Orien Rose, Orien and I will be adjusting. We are being as gentle as we can with each other (and I know yesterday was hard for me, but Orien did wonderfully with his gentleness about it). As we get home, there are things that sadden us, but more so…we have experienced so much joy! We have experienced so many blessings, that we will be able to pull from these moments, these feelings in our bodies for a long time to come.

There are decisions to make now, plans for our future, solutions figured out. I am slowly making my way back into the work world, step by step. I am not rushing. I am moving slowly, steadily, making sure I am supported all around before I take that step (kind of like what Orien Rose is doing right now as she rebuilds).

However, I do know that as we put one foot in front of the other and do the next right thing, we will continue to see the blessings and the doors of opportunity will continue to show themselves.

7-4-07

2007-07-04T07:42:00.001-07:00

7-4-07

Happy 4^th of July to you all. Happy Independence Day; a day that has taken on some new meaning as we get closer to our own. Everyone leaving yesterday (the therapists, and such) kept saying, “Have a nice Holiday.” I kept thinking, what holiday, oh right. There is stuff going on outside.

This one is going to be brief, but I realize it has been a few days. I came back late last night, and just really haven’t had much energy to do anything. I am running on fumes, even though my body gets some rest. Orien is feeling the same. We can’t sleep, the closer we get to coming home. I will be staying at Blythedale tonight and tomorrow night. Orien had an opportunity arise to do some more taking care of his soul, and it sounds beautiful. So, he will come home for the next two nights (though he offered to stay again tonight, I think it is easier for me to just stay). Therefore, you probably won’t hear from me again until Friday.

I do want to remind everyone that there is a blog out there with information (like our mailing address). You can find it at moonfinderbeams.blogspot.org

I went to Mary’s last night. It was late, but I pushed myself to go. I only stayed about a half an hour, but was able to collect hugs and kisses. And, to Orien Rose, this is the best way to heal (when we asked her how to help heal her, she said “with lots of hugs and kisses.” Boy is she right!). I felt so much more grounded, more centered, able to make it the last leg of this part. I was not afraid to be embraced, and boy did Lynn take advantage of this! Thank you.

This morning, I am writing quickly as I spent most of it cleaning house. I folded laundry, tried to somewhat organize Orien Rose’s room for her arrival (this is going to take more shelving than I have!), cleaned the cat box and tried to straighten up. More things check off the “to do” list. The rest will either be picked up by Orien when he gets home, or put on the “to don’t” list for the day.

For the past few days, we have been watching Orien Rose tire of Blythedale. Ready to go home, she is showing us what she is made of. Her executive functioning is coming back, her impulsivity beginning to level out, her processing speed increasing. These seem to be the three areas we will focus on to get her ready for the next school year. Her physical strength and stamina are amazing!

We will leave Friday from Blythedale about 10am, go to her pediatrician in Middletown and then go home. In the evening, we will go to my Mother’s for dinner, where Orien Rose will meet her new puppy and be in a comfortable place with family and friends. Though there will be no swimming to be had, I am sure she is going to take Karen up on her offer to soak her feet in the hot tub. On Saturday, we have decided we need a little shopping, a little outing into the real world and have allotted a small amount of money to do so. Orien and I hate malls and shopping for the most part, but I think we are feeling the need for a small spurt of humanity, a small people watching expedition. Orien Rose is very excited about this!

We will spend Friday and Saturday night at home, then we are off to Rhode Island again for a few days. We will be following up with Orien Rose’s surgeons and discussing the next surgery. We will be home again, Thursday night (12^th) and ready for a week of just being, visiting with friends and family, getting our home organized, watching stupid television on the couch while we cuddle, playing outside…you know…normal stuff!

Orien and I have decided that it is just too much to have our yearly festival, so for those of you who attend: Dirt Road Roots will be postponed until next year. However, we do expect to see the WHOLE CLAN at Lammas this year in August…lol…we need you. J Invitations will go out shortly. Michele expressed to me last night that she, and others, are ready to do whatever I need them to. I will definitely be coordinating some of that this week. I, and Orien, and Orien Rose, are so looking forward to a powerful ritual with all of us in attendance!!

On a side note, Emily has arrived safely back home. She is our friend, clan, family, student, teacher, for those who don’t know her, who traveled to India from temple to temple. Some of Orien Rose’s stones made that journey with her as well. Emily arrived home, but may need to go back into a hospital here. Her cell phone is still shut off, but I believe she has internet access.

I assume that sometime before then, we will have a fire on the front lawn and some drumming! So stay close, loved ones. We are grateful to you. We are grateful for you. We are growing and healing in your love.

7-1-07

2007-07-02T06:41:00.001-07:00

7-1-07

We have journeyed into yet another month. Happy July! I can’t believe we started this process in May, it seems so foreign. I think about the tests they give Orien Rose, and how she couldn’t tell them what month it was. Interesting, because I can’t even tell what month it is a lot of the time. Even though time has definitely come back, it still plays tricks with us. Last night, Orien Rose could tell me it was June, that the next day was July and that the accident happened in May!

As Orien Rose heals, Orien and I venture slowly back into the responsibilities that others have helped so lovingly with. There is a to do list on the kitchen counter, not a daily one, but one that is a reminder as so much goes through our heads. And yes, Steven, there is a “not to do” list as well. No explanations needed!!

For me, it is getting a little harder, as things normalize, to keep it together. I go home every other night to an empty house and memories of the beginning. I begin to wonder if this really has happened, is happening. Then I see it so clearly, the first moment I saw Orien Rose, how she responded to me. I see the bandage falling from her head, the blood, her head open, her eye insecure…searching. I see Orien Rose going in and out of focus from her perspective. I see the CT scan door closing and falling to the floor as if I am watching from outside myself (which I probably did), not knowing if I am going to see my daughter alive again. I go home to thoughts that tell me that things are normal, that the errands, cleaning, going home is normal, but it is so false. As we get closer, I get anxious.

I went to see Steven on Friday morning. It was amazing to be there. It was the first time I felt as if I truly fell into the arms of blamelessness. It was such an amazing place to be, it felt so good. Something in me had definitely healed. I sat on his soft, brown couch, a pillow in my lap. I tilted my head to the side, as in our conversation I could feel where blame used to be, but there was just no room for it there, in that moment. I was confused, and decided to just go with it. To just be in my body, not my mind.

Steven has taught me so much these past few years, one part so evidently at just the right time!! (Which I will get to later.) The first thing I remember feeling as this whole trauma was happening is, “there is no blame.” I remember being surprised by this, and it felt so good, so pure. The energy surrounding all three of us, a triangulation of the purest, has been instrumental in the speed of staying connected. This is not to say there has been no blame in my body these past weeks. As events happen on the outside, I find myself being drawn into the drama of it. Quickly, though, the blamelessness that healing requires engulfs it and makes it pure.

Steven and I began our discussion by him saying that he wanted to hear about me. That, obviously, the hour would include discussion of Orien Rose and Orien. All this, though, was how it related to what I am feeling. I told him that learning about body first/mind first, especially the timing of it, has changed the way I view everything! My relationship with Orien and Orien Rose has changed immensely because of it. Because of Steven’s teaching only weeks before, Orien and I had (and are having) a totally connected, totally compassionate experience. It all came together in the understanding between body first and mind first people. I have seen Orien in ways that I have never seen him before. Orien has had his own realizations about me as well; this all coming at a time that was to be so critical in all of our lives. I realize I am getting slightly convoluted. I can’t explain fully what I am just learning. I just know that it has changed me to the core. I know that this has been the missing piece for both Orien and I (and I can only imagine how many other people).

Sitting in Steven’s office, often living in my mind, it was a treat to move more slowly. I sat there, discussing my need to touch and be touched. I sat there discussing how important it was for me, and that I was struggling with Orien Rose’s sensitivity. He reminded me that I was gentle, and that gentleness can be unnerving. He asked me an imperative question, “Do you love not touching as much as you love touching?” Holy crap! I had never even thought of it that way. And then we found injury.

This was the moment the rest of my body (feeling mostly concentrated in one place until then), opened up. The exact experience is one that I probably couldn’t write about as it happened so totally in the body. I can only tell you of the feel of my fingers on the keyboard, and how in love with writing I am, how in sync with my mind and body when I am doing it. My mind not rushing, my body not stumbling, typing is a true connection for me. Then the question, “Do you love not writing as much as writing?” Ahh…

I had so much fun with this, that the rest of the day as I was connected to my body, I could feel it all. I realized the place (determined in the session) that I feel things most, is also where I sing from. I tried to change it, to feel it elsewhere as I drove home. I could feel the sip of coffee enter my lips, touch my tongue, the back of my throat, go down my esophagus and hit my stomach. It didn’t matter the temperature, I could feel it. I had so much fun, I almost passed out I was so connected (and boy is caffeine strong when you are truly connected to it entering your body)! I ate pineapple later, one of my favorite fruits, and ate it until I could feel it go through the whole process. By the time I was done, I could feel it with the tiniest bite. It was so satisfying! Thank you, Steven!!

As things normalize, and my contact with people increases, I have more thought, I have more head stuff. But, as part of my slow reentry, I will be at the Emergence Group in July. I look forward to teaching Orien (who is eating it up and blowing my mind in the process) what I learn. I see that we have both benefited from the work that Steven has so put his heart, soul, and so much more into! I am glad the Universe saw fit to have our paths not only cross, but to merge in part.

In my last post, I let you all know I was going to do my first party since this happened. Two nights ago, I did a party, I went back to work. I don’t know if it was the right thing to do, but I woke up that morning knowing I was going to do it. After speaking with the ladies on my team, hearing their voices, their successes and challenges, I knew now was as good a time as any. I did my thing, the ladies laughed. My party sales were enough to qualify me for the month. A few bookings and a serious Goddess lead let me know that I am still capable. I was not my best (and I know that no one expects me to be), but I was good. It was good. The women had a great time and went home educated! I couldn’t help but drift back to the world of the hospital in my thoughts, though. I was eager to return home so I could sleep and get back to the hospital.

Yesterday I received an email from Orien Rose’s principal about the transition to the next school. I am torn about her placement for next year. Discussing it with Orien, we did the best we could in the moment to come up with a decision. Later on in the evening, as Orien Rose and I were cuddling, we spoke about it as well.

Orien Rose is conscious of her healing. She knows she is healing fast and that people are helping her to do so. She knows that work is being done for her and is consulted on specifics. Two nights ago, Orien Rose asked Orien to help her with her Crown Chakra. Orien Rose said it hurt a bit when she tried to open it. Orien is good with her when it comes to healing, he asks the right questions, presents the right pictures. When he asked Orien Rose how it hurt, she couldn’t explain it. He then asked her, “If it were a piece of glass, would it be cracked?” She said, “No, it is cloudy.” He went from there. And informed of this, I worked from a distance.

So last night, we spoke of her ability to focus. Orien Rose, again, is aware that she has work to do. She is more conscious of looking into peoples’ eyes, of returning her focus when redirected. It is harder right now, but she is doing so well! When I asked Orien Rose if she would be able to concentrate right now if she had to go back to school, she said, “No, but I will soon.” We talked of tasks that had multi-steps and visualizing what it would take to accomplish those tasks. I asked her to show me the pictures, tell me, what it would look like. I saw it with her. She did really well.

Each day, Orien Rose’s progress is amazing. Two days after the OT and PT told me Orien Rose couldn’t do something, she was doing it, and with even more ability. They were amazed. I could see joy on their faces.

Yesterday, Janine (I am sorry if I spelled it wrong) and Joy came to visit. It was great to be around them! And yes, the Chicken Chucker was perfect!! She loves it, and I have a great tool to discipline (using the word as it original “to teach”) with…lol…needing to help her focus her impulse to point it in people’s faces. The other thing they brought for Orien Rose was a body crayon set, which of course, we are ALL about! Nothing like painting on the body. I remember being younger, but not too young, and painting my whole body. I just got so into the process, the feeling, the texture, it was heaven.

Orien Rose chose a picture from the book, an arrow that went from one arm to the next , that when placed at the head, looked as if it went through her head! How appropriate. She copied it perfectly from the book! So much for her inability to look at something and replicate it! Perhaps they should give her body crayons when they test her visual/motor skills? The day before, we had been discussing the discrepancies that came up with this ability, and here she is…in true Orien Rose fashion, taking the challenge!!

Ed, Inetta and Hawken came to visit. How beautiful that little boy is (and Ed and Inetta, too, of course). It was such an amazing thing to see him hop on the bed with Orien Rose, take her helmet and then put it on his head. He then laughed one of the best laughs I have ever heard!! Orien Rose totally got into it with him, making faces and noises that increased the laughter. It made my heart feel so good!! I am sure it did wonders for Orien Rose, too! The Universe is sending us just what we need!!

Speaking of, yesterday morning as I walked into my home I thought, “I really need to put the grass on the To Do list.” Then, as I took a shower, I thought, “I really need to clean my bathroom.” Last night, as I was on the phone with Orien saying goodnight (and various other things we say to each other) before he went to ritual, he said, “when I got home, Shawn was mowing the lawn and Bridgette was cleaning the bathrooms.” Oh man!

And on the same note, and good for the Spirit, Sandi (Orien’s aunt) sent us a California care package. We were supposed to be in CA this past week, visiting and attending our Nephew’s wedding. We could feel them yesterday, and some of my energy definitely went in that direction. When we opened the package, it was just what we all needed. Sandi had collected for us various items from places we love to visit when we are there. Coffee from the UnUrban, Firehouse t-shirts, a scarf from the gypsy store, hemp bags, Pirate of the Caribbean stuff for Orien Rose (as we were supposed to go see the third movie at a theater in LA), a fresh sage bundle from Venice Beach (which now sits on our altar here and smells divine) and so much love!! It brightened our day to no end. Waking up to the scent of Venice Beach was a little respite after a hard nights sleep.

As I sit here this afternoon, listening to Meryl Joan Lammers on my computer, I think about the last few days, the people who have come and gone, the flow that naturally caresses gently if we let it. I think of the Goddess in wax that Sue and Logan brought from a healing candle lit, and all the little things that seemed to have lead up to these moments. I think of Orien Rose’s Spirit, and how exhausting I thought her to be sometimes. I realized a balance, as even as she lay in the hospital I reached out and allowed others to take care of me, allowed myself to feel comfort. I know Spirit is what is responding!

I know that the balance will remain. I know that Orien and I have learned to recognize the signs of disconnect, that we have played to each others strengths, have allowed each other space without having to understand the need of it. I know that will remain. Faking something like this is impossible!

LATER in the evening…

Boy how things change quickly. Orien arrived, and both of us were tired. Last night’s sleep for me was erratic as there was a lot of crying and movement and nurses to wake me up out of an already unsettled sleep. Orien, being at a ritual for Orien Rose, didn’t arrive home until 5am this morning. Though we went through this, both of us being tired, fairly early on in this adventure, we don’t have the adrenaline to keep us going now, nor a third person to relieve us. Holy crap did this affect me. Orien Rose was up and around, wanting to play outside (which I did with her earlier…yay frisbie!), and go for walks with a little girl down the hall. I, reaching my threshold, was no longer able to do this consciously. It was a struggle to stay connected, my body feeling so heavy. It was a struggle to get up out of the chair that I kept sinking into. So, when I left, which was about 5pm, I made sure to get down to eye level with Orien Rose, look her straight in the eyes and take her in deeply. Too many times I have gone home missing her terribly. Because I was able to fully connect through eyes, words AND body (oh, the hugs were wonderful), I was able to leave there missing her, but not feeling a hole. I knew I would go home with my priority being to take care of my body so I would be “on” tomorrow, when the last week of inpatient therapy begins.

Orien and I, on the other hand, were more of a mess (to me anyway). For me, the needs surfacing are physical (emotional, too, but those are easier to take care of for me). I was not able to get from him what I needed in a hug. I left more abruptly than I cared to as I could not stay consciously connected as we said goodbye. Orien Rose was walking off, Orien had a need of his own, and by the time it got to me, I had already shut down. I find this happening more and more, and my head is trying to wrap itself around it. I find, for me, that my focus (though my intentions are good) is widening too much. I find that I am trying to get too many things done. The “To Do” list, though a great idea, (and I can definitely commit to not doing) is getting longer than I can bear. On the way home, I committed to doing nothing but getting home to my porch, where I sit now. I am afraid of re-entering into a daily routine at home; a time and place that requires us to think outside of our unit. I am beating myself up for still needing to ask for help. Yes, things are coming apart for me. Slowly, they are unraveling.

I need to break down safely, to cry and have someone hold me. This is a need that can’t be met right now. I don’t have a person available to do that with. Most of the people that played that role in my life are long gone, moving as life often does. I have a clear picture of it, though, and that is a good start. I pulled from that moment to keep me going. I remember watching the movie, “The War,” with Jim, a friend I had years ago, just after my Uncle Chris died. I did not know the affect the movie was going to have on me, but I bawled…convulsed with crying through my whole body. He merely pulled my head to him, put his arms around me, stroked my hair and held me until I was done. There was no fear of opening up, he was safe. There was not time, or time limit. There was no fear I had burdened, made uncomfortable, or overstayed my imposing needs. There was no need to talk about it, to process it, only to feel it in every cell of my body. It was about me, and whatever I needed at the moment. I am desperate for this now.

Though I have cried alone many times, I need this now. Because space, time and other things do not allow Orien and I to do this, I feel stuck. I am in an amazing amount of pain today, as I get so close, but can’t go there. Instead, I cried the whole drive home, music my companion. Crying is a good recharge for me, making space for what is next to come.

The more this event takes its hold on me, the more I realize how in need I am of touch. I find so often that I forget my body. I am stuck trying to figure out the best way to handle this. Do I get a massage? Do I soak my feet again (which are in such bad shape right now)? Do I call old friends? Do I just keep going, hoping it will take care of itself shortly in the future. Then I think of Orien, how I wish it could be him, how I want to blame him for not taking care of me. Immediately I think how selfish that is. He has needs of his own, that I probably can’t meet right now, either.

I apologize to you all reading this, as I know you want to hear about Orien Rose. However, I have found that this writing helps me so immensely to process this. I like sharing it with you. I have realized that someday, this may help someone else get through a similar situation. The parental unit being a big part of it, I felt it okay to share my process with Orien. Though I have many things more to say, many more struggles, I write what comes the moment I open the computer. Perhaps I will look back on this in the future and add to it. Perhaps I will just let it be. I thank you for sharing this with me, for taking some of my burden.

Decisions have been hard, and yet easy, during this time. Life decisions have been made for us, but there are things that need taking care of. Then there are the things that try to distract me, like the RV now parked at the end of my road that is well within the price range we had previously (prior to the accident) discussed. It sits there, enticing me, knowing we do not have it to make a purchase like that right now. So I tell Orien, I have seen the signs in so many things we have done. I am looking for the sign in this. And he says, “It was a little sign, and I had to step into a puddle to get to it!” Well, alright then. I will let it go, and know that the right moment will come for the RV that will take us, including my father-in-law and Sara, across this beautiful country next Summer. Starwood will happen, and we will utilize what we have available to us.

I spoke with my mother tonight and she said, “what you are going through is probably one of the hardest any parents have to go through. You know I love you!” Yes, I know both of those things…And with that, sitting on my porch, and writing, I feel better.

6-28-07 really

2007-07-02T06:39:00.000-07:00

6-28-07

I am home tonight, and the air conditioning situation has been remedied for the time being by an ingenious move on Orien’s part. I feel good, sitting here in bed, knowing I will be comfortable enough to sleep.

I drove home this evening after a busy night of visitors and parties. Orien Rose’s roommate is going home tomorrow morning, and I am sad I will not see her off, but I said my goodbyes tonight. Roberta came with amazing food, food you can feel when you eat. There is just a huge difference between home cooked food and take-out/hospital food. I don’t think I ever knew the difference before. It has been a learning experience for me.

Vann came tonight to start working on the horns for Orien Rose’s helmet. It was great to see him, to get such an intense hug from him! It was grounding. We talked shop a little as I watched him so easily mold the clay into different forms of horn. The colors were fantastic and many. He truly is an incredible artist! He offered to come work with Orien Rose on retrieving, rewiring, relearning (re something) her artistic abilities. It definitely made me weepy, talking about Orien Rose, pens, pencils and colors. It made me confident that Orien Rose will recover to her fullest, if not more, potential.

We spent the day welcoming a new roommate and saying goodbye to one of Orien Rose’s newest friends. Not only did she make a friend, but Orien and I did in her father. We definitely looked to him to guide us through the ins and outs of the hospital life. He is a great person, so caring, compassionate and aware. He is an inspiration to me, and Orien as well I am sure.

The other of Orien Rose’s roommates was much more alert today. He responded to Orien Rose’s voice as she went over and introduced herself again and again. Explaining that he didn’t know her before, she was able to connect to him. It was such a beautiful thing to see. Even as Orien Rose is healing, she is helping others to heal. Her heart is big!

We are close to leaving, and we can feel it as others go through their transitions. We can feel that we are not far behind. We are almost home. We will leave next Friday, go home, go to my Mother’s for a short period of time (and there, Orien Rose can meet her new puppy), and then cuddle in the big red bed.

Orien Rose’s new puppy is cute. He is a chiweenie (don’t ask) and has gone through a number of names. However, we have all decided on Zenzilla; a fitting name for a little dog that is going to need to acclimate to two large ones. Holy cow. What were we thinking…lol…

Today, we had a scare with Orien Rose. This morning she had diarrhea, but I did not find this out until later when the event of the day prompted me to ask what kind of bowel movement she had. To think, one of the norms of our day has become inspecting fecal matter. This afternoon, as Orien Rose was in PT (in which she did her obstacle course wonderfully three times) she got lightheaded and woozy. Orien Rose, at the end of the third trial went to pick something up from the floor and felt dizzy. Her PT, noticing her equilibrium was off had Orien Rose sit down. Orien Rose then began to bead with sweat and, feeling nauseous, vomited into a trash can. I was on my way, the nurses already informing me of the issue. When I got there, I had her remove her helmet (she was lying on a mat) and sat with her. She was pale, sweaty and needing to vomit two more times. We were all concerned about seizures.

Orien Rose is on an anti-seizure medication. The dosage was changed once we got to the rehab because of the liquid vs. pill debate. Pills are easier to measure because it is not always a guarantee that the liquid is mixed right. Her dosage was increased slightly, which caused her to break out in hives a few days back. Her levels were then too high, so the dosage was changed two days ago to something lower. Her levels are still at the same range. So, next week, the dosage will be checked again via a blood draw and we will go from there. We do not think today’s episode was a seizure, though we were careful to watch the eye movement and general receptiveness. She made a funny eye movement, but was overall slightly receptive. She also did not have any seizures on the lower dosage, so they are thinking that was not it at all (nor do I feel it was one either, having seen the more mild types of seizures in kids). That’s a relief, though a scare none the less. Definitely brought me back to a right size with this healing process.

After thinking quick in asking Orien Rose about the morning’s bowel movement, we determined it was probably dehydration (though we are careful to make sure she gets lots of fluids…this morning she didn’t want to eat or drink much). We will have another blood workup in a few days (we did one today) to see if it is the medication or not. Orien Rose lay down for a little bit, we refilled the body with liquids, and she felt better soon enough. Her color came back and she was up and moving around again for the rest of the night.

When I left, she was visiting with even more friends. When I left, I was sad to say goodbye. When I left, I was making a move back into my work world. I did a team teleconference on the way home. It was so grounding. It felt amazing to talk with the fantastic women on my team. To hear about their positives and negatives (and hopefully I addressed those well enough to turn them into positives) made me feel like I am doing okay. I apologized for not being available this last month, and was relieved to hear they went on without me in doing the teleconference last month! They inspired me to keep going, and let me know (not in words) that it was okay to ease back into my roles, rather than jumping in with two feet. I think I would drown if I did anyway!

I have a few parties booked for July (and my first one tomorrow night) and August. I will keep those few and probably not book anymore. I will not train again until August, when I can fully concentrate on creating worthy classes. I may try to go to the Business Building Workshop in RI in July. All of this, I am taking on a day to day basis. It was hard for me to leave tonight knowing that I would be away for two nights. I am not even sure that when tomorrow comes around, I will be able to do my party (I have someone ready and waiting to take it if I need). I do know, that I am supported on all fronts!

I spoke to my team tonight about my why story. It is no secret that the Why story changes for many of us. Mine has turned from one of getting over performance anxiety and needing extra cash to finish school to one of empowerment, independence, creativity, leadership and personal and business growth. I shared tonight about how Athena’s as a whole jumped right in and supported us in such a time of distress. There was no shame in asking for help, as it was freely given before I could sleep the first night. There was no feeling of being a burden as women (and Curt…thank you very much!) lined up to cook us food, to bring us love! I asked all my team members tonight to please share that, to take it and spread that when they were talking about the business opportunity and the integrity of the company!

I needed to share this aspect of it, as it is still so amazing to me, the amount of support we have gotten and continue to get!

Well, it is after midnight again, and I have still not gotten to bed, so I am going to now. I am going to climb under the sheets, pray and meditate. I am going to visualize Orien Rose fully functioning to the best capacity. I am going to revel in the fact that we have five more months to “reconstruct” Orien Rose. To stimulate her brain, creating even more neural pathways!! This is a great opportunity, one that so many have volunteered to help with: Vann with art, Ed with Tai Chi, many with music, Emily and Francesca with her Tae Kwon Do (forms only). We have given her the option now of going to recreation (when it is open) or staying with us to do brain games (we got a great book sent to us).

Also while praying and meditating, I am going to asses our day to see how well we all connected and where there was painful communication due to disconnection. I am going to pray for the strength to make a list of things to do, as maintenance (bills and such) need to be dealt with, and to have the wisdom to space it out into a time that will cause the most amount of blessing. I am going to revisit the web of people, the networks upon networks. I am going to assess and heal my body, getting it ready for another day. I am going to see my little girl’s perfect face, her smile and the light in her eyes as I fight while sleep takes hold. I am going to visit Orien Rose in that space between wake and sleep and breathe wholeness onto her.

Update from Christine 6-28-07

2007-06-28T05:27:00.000-07:00

I just spent an hour trying to figure out how to get my Palm Treo phone to hook me up to the internet via my laptop. No go, but kept me occupied. So this post, along with tomorrow’s will go out tomorrow.

Today was a good day. It was busy this morning, or perhaps I was running late, or maybe both. I am not quite sure. I do know that cramming a few things into a short amount of time is not working for me right now. At least I got my oil changed and some other maintenance on the car to make sure we can get back and forth. It just took longer than I expected, and I was already chomping at the bit about the meeting today.

It is wild being in the middle of this, and I keep having this thought that goes something like this,” wow, this happening has really taught me a lesson about the priority of family...actually…that’s not it…it showed me that my priorities have always been in the right place.” Because, as I am thinking about what to write, I think about this statement and how I have heard it so many times when people go through a life changing event. The thought is a fleeting feeling that I should have this thought, more so than the thought itself. Then, it is as if I giggle to myself, saying…right, you got it! You are doing it. It has all fallen into place because you have been doing the next right thing, putting one foot in front of the other this whole time. You have done the work (and will continue to do the work) to challenge yourself and grow.

I am pleased to find I have compassion, as sometimes I can get hard. I am pleased to know I can accept compassion, as often I “do it myself, and I will be just fine, thank you.” That has definitely been a lesson in all this, that I can ask for help. I am so glad Orien and I went to our session yesterday. It was a good check to have someone who has observed us, possibly more objectively, say…yes, you are doing it! You have given each other the space you need, just because. There is no need to understand the need, or blame about the need (whatever the need is), there is just a need. That we can hear that instead of staying in a place of blame, we honored each others strengths. Our methods of communicating have become clear, and quite a few times I found myself understanding Orien even better. I have been able to see so much more!

Friday, I get to meet with Steven. I have all the plans in my head about what to discuss, but as usually happens, what will come out will come out. I have some needs that are popping up. Needs that time and space don’t truly allow for. I would like to sit on my couch cuddling with my family, but even more so to take my husband and hold him. To stroke his face and look in his eyes as we breathe together for more than a moment. The powerful moments we have had let me know that this will happen! And soon!

…But, I am sure you want to hear about Orien Rose…lol…I ran away with myself for a moment there. Then I shifted, and saw her lying on her stomach in her bed. She is beautiful, powerful and strong. Orien Rose is sleeping so much deeper, her body and eyes twitching occasionally. Her hands move sometimes, perhaps in a deep seated remembrance of falling. These moments I am collecting to help with further body healing down the road.

Today was the treatment team/parent’s meeting about Orien Rose. It was wild sitting in that room, being the parent this time. It was wild to hear about her “scores” on all the tests they are doing with her. Most of the tests I am familiar with. It was nice to know what they were talking about. I was able to be present, to take the information and write it down and to see the connections, the repetitions between therapies. I was able to add my notes to theirs as I wrote in my notebook, reminders, ideas about how to stimulate Orien Rose.

We have a window now. There are about six months where the brain is ripe, ready for rewiring. We have five more before us to begin some more intense rebuilding. Pulling from the information presented, I was able to determine a few key points (and the rest definitely not to be discounted): it is important to stimulate Orien Rose but not to push as she will shut down; Orien Rose will benefit from repetitive multi-step processes; having her talk out the process more, to verbalize with elaboration is imperative (her answers have been very short and simple, short term memory an issue? Or just not verbalized? This was an area of great strength for her before); and of course, impulsivity came up within all areas. Also an area of concern (especially for me, due to Orien Rose’s previous fantastic artistic ability) is her ability to look at something and then draw it. I know she will be able to get something from one picture, to her brain and onto the paper! It is just a matter of time!!! She is doing so incredibly well.

Orien Rose’s physical strength is great. Her balance is steadying; she is able to move side to side. There is some fear showing itself now, but she is strong and willing to move a little slower to get there. Orien Rose’s right side needs strengthening, as does her face on the left side. We have already begun the work in all these areas, physical and cognitive.

All throughout the meeting, the whole team couldn’t help but address that Orien Rose is at a place that people wish for months down the line! She is a miracle, they said…over and over. No matter what placement and services she will need once school begins again, she is a miracle!!

We get released (funny, I keep using that word, really it is a discharge) on July 6th. We should be leaving sometime that morning to go home. Until then, Orien Rose will receive all services five times a week. Upon leaving, Orien Rose will need speech and occupational therapies at least three times a week. We are looking at Inspire in Goshen, but if anyone has any other ideas, please let me know. I will start making those phone calls tomorrow.

For now, I am going to try and get a good night sleep, but this statement has almost become a joke to me. A good night sleep will happen on July 6th, when Orien, Orien Rose and I cuddle up in the Big Red Bed. A sanctuary that has gotten us through many a hard time. A place where we have played cards, tickled, cuddled, watched video clips on the computer, laughed, cried, hugged…you get the picture. There is so much energy in the Big Red Bed! (And yes, it is red, we tried another color once, but it didn’t work.) This is the place we went to six hours after Orien Rose was born. It will be a nice night when we can all cuddle together at home!

Update from Christine: Trying Again

2007-06-26T05:28:00.000-07:00

It’s late, and I am home. Walking in the door, I felt something was wrong and then realized it was my air conditioner. It reminded me of the times I am sitting there, hanging out with Orien Rose, and I can’t quite figure out why I can’t sit still. Only after wiggling a bit do I realize I am uncomfortable because I have to pee. It is funny how the body can be so persistent!

Tonight, I got home and my house was about 90 degrees which makes me want to do nothing, sleep the least of my priorities. I was hoping by going home every other night I would get some good sleep. Contrary to my beliefs, however, I am getting less amount of hours sleep.

Though, I don’t believe the sleep at the rehab is great either, it is just different. Home is definitely a recharge, Blythedale more secure. Last night I climbed into Orien Rose’s bed to cuddle with her (after making my own bed) and fell asleep. I tossed and turned, dreaming of war. I dreamt of mines and shells, bombs and loud noises; all of this, while I was trying to get Orien Rose to safety and wondering how I was going to do it without a skull on her head.

I was not the only restless one last night, though. It seemed to be going around as I discussed it this morning with the other parents in the room. They, too, seemed to be having a hard time sleeping. Perhaps we were fighting our children’s war right beside them, partners on a battle field with blue walls and iridescent lighting.

Moving on, though…Orien Rose is doing well. She has gotten quite a number of visitors this week already. Meryl came to play for Orien Rose yesterday, and couldn’t. It was a great connection, seeing Meryl release the angst she held until that moment. It reminded me that others care so deeply, so lovingly, and have such a sweet soul. We also got visited yesterday, during the time Meryl was trying to play (it was a little akward) by a man who has helped gather my grandfather’s union! They have rallied and helped so amazingly in allowing us to get through the month, day by day. Their generosity has helped to make it possible for Orien and I to be there with Orien Rose. The ability, or which, I believe has been instrumental in Orien Rose’s recovery! It was such an amazing feeling as he walked through the door. I was not sure who he was, but immediately knew. His energy was so beautiful as if he fit right in with how we are all healing! No introductions needed (though we made them, of course!).

This man also helped to confirm my writings. I do think, occasionally, about if people are reading the posts. I know people are, as I am still getting some emails, but I definitely don’t always KNOW. Then this man tells me that not only is he reading it, but his child as well. That they are “addicted, “they want to know the next steps. Then I get posts from one of the nurses at Hasbro, and I know that there are so many different networks staying posted. I don’t know if I can explain how that makes me feel. I am tired, and it would probably sound like I do when I have a wicked crush on someone and can’t talk to them. It is my stupid, duh-head, jabbering (like I am doing now). So, please, just know that it makes me feel good, to my core! And perhaps when I am less tired, I can write some more on this.

Last night, though…I am not done with last night… I got to hold a beautiful little baby boy in my arms as Chris and Rebecca visited. Orien Rose got to hold the baby too (and she got her picture taken with him). It was so needed! So comforting. The hugs where so genuine, and even though we get visitors and we get hugs, I don’t tire of the freshness of each one! Each one is vibrant, recharging, centering!

Orien Rose is progressing wonderfully. She is up and around, moving and talking and figuring things out. She is completing tasks and organizing. She is doing even better today than she did yesterday. The therapists were all commenting on how much difference a day makes. It is hard to believe it was just over a month ago.

I start to think, sometimes, that this didn’t happen; that this is a dream and I am going to wake up soon, but then I live the nightmare again. I look at how well Orien Rose is doing, and I see us falling into older behavior patterns, getting comfortable. Then I am on edge as I see her beautiful little face sliced and covered in blood. All this, my mind reminds me of. I think with the time alone, now, Orien and I are both feeling it more. We are reliving our experiences more. We are staying connected to each other, but when we come home…we are alone.

Today, Orien Rose (and us, too, of course) had 13 visitors. These visitors where from all sorts of networks: school, old friends, family…it was wild. We moved the “party” down to the cafeteria where we munched on fresh fruits and veggies, hummus and good bread! We talked with Orien Rose’s principal, teachers and social worker from Goshen. It was great to do so. It was good to see people who knew and cared for Orien Rose on a pretty regular basis. It was good to see their faces as they saw her.

I made a comment to my grandfather, who had not seen Orien Rose until today, about it being easier once you see her. The social worker must have overheard me, because she said that she too felt better after seeing Orien Rose. I realized something in that moment. I realized that some of you who have been reading these posts have not seen Orien Rose. That perhaps you have seen the video clip on NBC, but you have not seen her. I realized that some of you following along are still in shock over this event, that though you have been reading my updates, it is hard to imagine the miraculous progress Orien Rose has made.

Please know, that with each day, Orien Rose gets stronger, healthier, her skin color improves, her spirit (so strong to begin with) gets brighter. Know that Orien Rose is aware of your energies, as are we. Know that she is aware (as are we) that this process has been in a big part due to you!

Know that, even though it has only been a month, Orien Rose is up, moving around, singing karaoke (tonight’s rec entertainment at the hospital), drawing and learning. It feels as if we are going through the early stages of childhood development. This is a comment I have made before. We are at the stage where she is asserting much more independence. We are at the stage where I need to remind her to tell me where she is going. I tell her I am glad she is going out of the room on her own into the hall, but that if she is going around the corner to play video games, she has to tell me. Orien Rose has gotten really good at signing herself out. We are moving quickly!!

Orien and I left tonight for a few hours while my mother and Abigail hung out with Orien Rose. This was the first time we had alone time in over a month and we chose to spend it in a therapy session! I loved it. It was one of the best sessions we have had. We discussed so much, Orien Rose definitely coming into it, but being in the sacred space that we were…the focus was kept on us. We spoke about options, that there has been no option of failure in this. That our relationship has strengthened as only it could. We both agreed that looking at it, we realized that “this is why we have been doing all this work.” In every aspect of our lives, the work we have done with ourselves, our students, our teachers, our therapists, etc…it has led to the strength we have now, the solidity.

The bubble of protection is so there. Originally, I thought moving to Blythedale had made it harder. In some respects it has, but it in others, it has made us even stronger. That bubble is still taking care of anyone and anything that doesn’t have anything but good intentions towards Orien Rose or us. Those local to us are starting to visit. Those who have played such a major part in Orien Rose’s life are starting to come more often. People ask us if it is okay to visit, and well…mine and Orien’s reply is always, “we NEED visitors.” We feel the support and love that comes with each physical presence. It is so nice to see your faces, your smiles, and your relief. You remind us that we have gone through something major, as a lot of this (speaking for myself) has become life. It is what we do!

Orien shared with me a beautiful experience at a chant class he went to last night. He is having trouble sleeping when he is away, and doing this made him feel right sized. This group had done some work for Orien Rose in the more critical moments, and is getting ready to do even more work this weekend. Wednesday’s meeting was preparation for the upcoming work. He commented on the focus of this group, their ability to be so cohesive. He felt good, and I felt good listening to him, feeling his peace.

Upon returning to Blythedale this evening, I reorganized the room (some beautiful sundresses, fruit and art supplies arriving), hung out for a little while, gave my hugs and kisses and left to come home. The drive left me thinking about what I would write, what I would off-gas, what I would give to the road. And I have come to the same conclusion that I do every day: everything, and I mean EVERYTHING that has come out of this last month has been nothing but a blessing. It can’t possibly be any different. Faith, there is no question. Life’s patterns, events, trials…all a blessing…this past month, one of the clearest of them all! Every letter in the mail, every loose end to tie up, every new gift Orien Rose has given us, every thing I needed to cancel. Everything, a right sized portion of blessing.

Tomorrow, late morning, we have the treatment team meeting where we talk about all the tests and evaluations Orien Rose has just done. We talk about the next plan of action. We talk about discharge and school recommendations. At least, this is what I hope we talk about…lol…

I will keep you posted! In the meantime, keep those emails, cards, calls, and visits coming. We are thriving because of your support. We are able to keep things in perspective because of your ability to take some of this from us! We have asked for your help (no easy feat for us), and you have answered!! We feel blessed, loved, held, supported!! Thank you!