We have been living with Abby's ataxia so long we barely notice it. Sometimes I notice other people noticing it, but I really don't. I have been going through pictures recently in an attempt to get caught up on printing them and I noticed something. Abby's ataxia and spasticity is way more noticeable than I give it credit. If you look at Grace in pictures she is all smiles and relaxed. But Abby always seems to have her arms all stretched straight or her body in an awkward position. As I looked through the pictures and I was looking at them as an outsider looking in she almost looks pained. Like holding her body still might hurt her.
I can't imagine life like that. I enjoy my quiet time. It's very rare but sitting on the sofa or outside in a rocking chair is so incredibly relaxing. I look at Abby, even when she is having down time, and she looks so stiff and jerky. What must it be like to be out of control of your body like that? Does it hurt? Do you even realize you are doing it? It makes me sad as a Mom to be so out of touch with this huge piece of who she is. I wish I could say that in time she will stop the flapping and rolling and spinning. I hate that when she gets older she will know that it isn't "normal". Other teenage girls will be worrying about zits and boys... will she be worrying more about flapping and unwanted hand jerks???
Oh... if I only had a crystal ball.