It’s not so much that I am surprised but mad, really, really mad. It was such a lovely weekend. I picked Claire up from school and her aide told me about what a great day Claire had. It wasn’t just that she didn’t turn blue, she was super on and loved the day. It was one of those normal great days that I dream of. So with that we were off to go ride horses on a lovely warm October afternoon. Claire nodded off as we drove on the curvy mountain road listening Tchaikovsky and Chloe quietly listened as she watched the trees. Traffic was light so we had time to stop by Captain Awesome’s office. Chloe went inside for a minutes and I sat in the car enjoying the cool breeze with Claire as she slept. Then, without any warning, she started to shake. I ran around the car as quickly as I could so I could stroke her head and talk to her should she be able to hear me. This wasn’t dystonia, this was scarier. It didn’t last long but it wasn’t more than a minute before it happened again only worse. After that one she seemed to try to be coming back. She had smaller ones, farther apart until it seemed to subside. Jared and Chloe came back out with her prized bag of Chex Mix and then a much worse one came. He saw the look in my eye and jumped in. Helping her as she foamed at the mouth and vomited. Then it was over. She quickly started to come back so we figured it was worth trying to ride. Sure enough she was alright. She struggled to hold her head up as her neck muscles were close to fatigue from all of the convulsing. At the end she smiled one of those smiles that so clearly said, wait, I’m coming back, don’t give up. My heart broke. I hate seeing her so alert on the inside and struggling so much more on the outside. The worst part is that I am fairly confident that this is because she was having a good day. This is the second time in a few weeks that she has had a fantastic day and responded like this. I think of it like a gastric bypass, because of the restriction, you can’t eat too much, it will come back out. Claire’s brain can only handle so much. While she is capable of enjoying school and learning a lot she doesn’t have the infrastructure to support her thirst for life. The trouble is that she is just so incredible, I don’t want to dial it back but if we don’t I fear what might happen. Rett syndrome takes small things like the simple pleasures in life and complicates them, ugh.
One thought on “It’s just not that simple”
Absolutely true – totally recognise this. It's the worst thing, good days that turn bad because she can't handle it all. Sad for all of us xx