In the midst of so much going on legally, we still have to make decisions for Bryer's therapies. As much as we didn't want to accept the Infant/Toddler Program in the beginning, the therapists have been wonderful! We look forward to her OT appointments at our home like a missing piece of our family coming to visit! The sad part is that we need to find a place to transition to when Bryer turns 3. After all the confidence it took just to switch doctors, I feel that again with trying to find a good fit for therapies.
To add to my anxiety, her records still read 'Abusive Head Trauma.' I don't want that title following her for the rest of her life and all through school. It's like if I were misdiagnosed with AIDS and then they found the real diagnoses. I wouldn't want every other doctor I see to be skeptical of the AIDS on my medical record, always questioning my future health relating to that. We've decided that whatever therapy we are led to, this would be a good time for a fresh start. It's not anything that I am fearful of or hiding from, I just want the next therapists to see Bryer for who she is and the miracle she is in our family - without the stigmatism that comes with a medical record that says 'abused.'
When we made the move, I researched all the nearby school districts for a good fit for our family. I am so happy with the schools for my older kids, but it's just not sitting well with me to start preschool there in 5 months. None of our other kids have gone to preschool, with the exception of Piper when Health and Welfare suggested she go to preschool for a couple months.
My prayers are that we will be led to the next step that will be the very best for Bryer. I have never wanted any of our kids to go without because we chose to have a big family. I work hard to help them find their niche, their natural born talents, their God-given abilities. Bryer is no different.
We also have to make another big decision. One that no parent ever wants to make for their child. We need to choose a wheelchair. Even writing that "We need to choose a wheelchair," plants denial again. Part of me wants to carry her around forever. She has to work so much harder to sit up and adjust to my movement if I'm holding her. I want her to be attentive and curious about the world around her. I want her to see the things I see and be 'in the action' cooking dinner with us, dancing with me, going down all the slides and swings at the park, whatever any other 2 1/2 year old would love to do. On the other side, my body physically aches. There are nights I can't sleep because my back hurts from carrying her around all day. My arms and shoulders are trying to keep up to match the demand, but I'm coming to the realization that I can't do this forever. I don't know why that is so hard for me, but it brings me to tears to have to decide on a wheelchair. I've put it off and put it off. I finally accepted a home visit from a wheelchair rep. I had a long list of wants and needs that this 'magical chair' was going to have to have to meet for my approval. Realistically, a chair with this many bells and whistles - well, it's really just back to me carrying her. There's just no substitution for that. So I have started whittling down my list to the 'must haves' and 'would be nice' features.
We went on a Pioneer Trek with another family. 11 miles in 3 days with 10 kids, and a pregnant mom (not me!). Some well-meaning family suggested we leave Bryer home. Not a chance! She's part of our family and was along for the ride and added another whole dynamic to our trek, riding along in the wagon as a (mostly) happy camper!
I was talking with another Mom with a special needs child and she mentioned a preschool program where the children are one-on-one with a therapist the whole time. I have started researching this program and putting together my list of questions. They're gonna have to be impressively good to replace our current OT!
Today we were out at the grocery store. A lady stopped us and commented on Bryer's curls. It wasn't the first time. In fact, it's come to be a nearly daily occurrence. Still, I oddly still don't know what to say. "Thank you," always flows off my lips in reaction to the compliment, but then this lady stood waiting for something more. A conversation about Bryer? By the look on her face, I could tell she was curious about what was 'wrong' with Bryer. After all, she's 2 and is working hard to sit in a cart without support for her legs. The seatbelt holds her up for the most part, and I usually try to find a watermelon or big bag of chips to prop her up on each side. It's definite progress, but she's not the little girl trying to squirm her way out of the cart like other 2 year olds I have shopped with.
After an odd silence, I explained that Bryer has cerebral palsy. The lady was honest and sincere and apologized for not being familiar with that term. I explained that there's an interruption between the messages the brain sends to tell the muscles what to do. She seemed satisfied with that response. But as I walked away, I felt deflated. All she saw was this little girl with cute curls with very little control over her own body. I wanted to turn my cart around to go back in and tell her what a blessing Bryer is to us, how much she has overcome, how she understands much more of what we say than what she can express back to us. I wanted to tell this lady about how the doctors told us Bryer may be a vegetable for the rest of her life and how she is so far from that!
I still struggle with what to say when people comment on Bryer's curls. I love that her curls act as a magnet for conversation! I just never know how much people want to know. If someone commented on one of my other kids, I wouldn't say, "Oh yes, but you should see how messy they keep their room and how awful they are at such-and-such." I want to talk about Bryer's positives and miracles. I suppose it's human nature to want to know what's 'wrong' with someone. The way we see it is that if God meant Bryer to be a perfectly formed, squirmy, curly haired girl trying to get out of the grocery cart, then maybe He would have gifted us with that miracle a long time ago. Now I usually answer a curly-hair compliment with "Thank you. She's our little angel girl!" If they want to know more, I have gotten good at reading it on their face.
Sept. 13, 2013
We went to court this week. Jason and I got there early, feeling confident, and waited outside the courtroom for our attorney to get there. This would be considered our pre-trial conference to make sure all the details are worked out just before they start the jury selection process. As soon as we saw our attorney come around the corner, I knew something was off. He's a sure, steady man that doesn't show much emotion, but something about his appearance told me something was wrong. After hellos and handshakes and making sure we were outside the right courtroom, he opened the folder for our case. He pulled out a photocopy of a newspaper article and handed it to me to read while Jason read over my shoulder. It basically said that the neurosurgeon we were planning to use as our expert witness had misrepresented himself in a different court case. My attorney could probably see the confusion on my face. He explained that the prosecutor gave him this information earlier this week and it puts a big hole in our case that our expert is deemed unreliable in the court system.
My heart sank. My confidence floated away. What in the world does this mean? Have I spent too much time putting my faith in a human that can make mistakes?
After a visit with our attorney today, as well as another attorney he brought in as a second opinion, our options are out on the table. Both attorneys agreed that the neurosurgeon's testimony along with a pediatric radiologist, we had a fairly strong case. The 2 attorneys said today that if we can find anyone comparable (in less than a month), our odds at winning are 50/50. It really is up to the jury and how well we are represented.
Enough to make me 'grrrrrrr' in frustration. So, I have to gather myself and look at the positives. It's the only way to survive it! It is a blessing the way we found out about our expert witness. The prosecution was 'digging up dirt' and found that this neurosurgeon wasn't credible as of April of this year. She sent the article to our attorney.
She really didn't have to do that. She could have waited until he was on the stand during trial and then slaughtered him. She would have torn apart his credibility right there in the middle of it all!
We also went for a screening to the preschool I called about. Even after talking to the coordinator and getting most of my questions answered, I thought, "I'll just go through the screening process just so I know what to expect for the next preschool I'm serious about." I'm not really crazy enough to drive 40 minutes to school every day!... And then 40 minutes back home.
We walked into the big room at the preschool. I was impressed with the therapists and questions they asked and how thorough they were. They had a big mat out and they got down on her level to play with developmental toys they brought in. Normally she is serious and snuggles on my shoulder in new situations, but she laughed at them when they made funny sounds and even let them work with her and feel how her body moves! She was animated and eager to show off. They put me at ease and encouraged me to be as much a part of her day as I wanted to be, especially during the transition process if she is selected. I left just wanting to love this place, but still feeling reserved about the long drive time. They also had a few others coming in for screening and only had one opening to fill, so I didn't want to get my hopes up yet.
It's a hard decision to make. Even to hope for. As I looked at these women's faces before I left, I wondered, "Will they be the ones teaching Bryer so much if I am in prison somewhere?!" I hushed that thought and decided just to focus on how much I love this place for Bryer!
Then, I got the call that they have selected Bryer! She'll be 1-on-1 with either physical therapy, occupational therapy, or speech therapy the whole 3 hour block, 4 days a week. We are so excited about it that we've given in to driving nearly and hour and a half each day to and from preschool. Just as I pumped to give her the best of the best, now I'll drive. I'll try not to think how this is all supposed to work out if I'm not here.
It's been a sad time to say good-bye to our OT that we love so much! I'm sure we'll stay in touch, but it's not the same as seeing her every month.
The song I have listened to over and over is If I Only Had Today, by Hilary Weeks (Not my video, just a favorite song).... https://www.youtube.com/watch?v=wJIqJyxiyJs