11-4-07

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.