Balance is hard. I believe it always will be. Right now part of my struggle is living in a place that fully accepts and embraces Claire for who she is and how she is right now, while at the same time pursuing better for her. I don’t want our 9 year old to spend every day thinking that she needs to be fixed, but at the same time, I know that she longs to speak, not with her eyes but with her lips. It’s a delicate line that we walk.
Last weekend we went to the WSBK races at the track not far from our home. We’ve been before. One year Claire had giant seizures just as we pulled up to park and it was a very hard day. Another year she was so relaxed and oozing with joy while we were there. This year I wasn’t sure how it would go. Either she would love it or her brain would surge and take her out. Either way, I needed to be alright and it’s just draining to live guarded like that. The good news is that she had a marvelous time. She got the thrill of watching the bikes transition between turns 2 and 3 and she loved it. If every day was like race day, I honestly don’t know that I would feel so strongly about finding a treatment for Rett syndrome.
Monday came and Claire couldn’t tell her friends about the fun. She rolled her eyes as I had to feed her a cupcake and eventually her brain raged on her body. It was again clear that Rett syndrome is a problem and we want better for Claire. So with that reminder we prepare for the last leg of our epic adventures to Boston. It’s such a privilege to give Claire this opportunity, to help herself and her friends who are trapped by the same genetics. Somehow, this is our healthy, very crazy and unstable balance and for now it’s working.