To the Children's Museum
Out to dinner
Take THAT, Anxiety!
Last night I still fell asleep thinking about her hearing, about food, about illness, about the Button. So I probably didn't show Anxiety much of anything and KayTar will probably be sick within the week, but it felt good in the moment. We were free! Or we fooled ourselves into believing that at the very least. Either way, it was nice.
We are restarting sign language with KayTar, back to the beginning it seems. Once upon a time, it was her only communication, but her speech really began to emerge after getting her little purple hearing aid. Signing fell by the wayside much like her wee walker had, a crutch she no longer needed. Here we are again, though, feeling the the beginnings of a communication struggle. Our words are not always reaching her ears with the meaning still attached, so the hope is that sign in conjunction with speech will alleviate some of the confusion. The hope that this is all an imagined response to an incorrect hearing test is still trying to keep its head above water for appearance's sake, but I don't think it can keep it up for too long. We got her new hearing aid mold this week and it isn't fitting quite right, which causes copious squealing. It is loud and annoying and we ALL hear it. Except, well, she doesn't. It is squealing directly into her ear and there is no response from her. She used to tell us, "My ear is squealing!" or pull it out when that happened, but now, nothing. Just one more weight dragging that sad little hope underneath the waves. In the end, it can't hurt to reintroduce signing, but if we don't and the loss progresses? Well, we'd just prefer to work on it now rather than later.
At the museum, she spent quite a bit of time in the little mock-up grocery store...mostly counting things and reading the signs and labels. I looked around the store and realized, she eats absolutely nothing they sell. Nothing. A grocery store geared to children and she eats not a single thing that is sold there. Ice cream was an almost, but they didn't have vanilla which is OF COURSE the only acceptable flavor. At dinner, though, she ate part of a bread stick and dipped it in alfredo sauce, which was HUGE! She hates cheese, so dipping her bread into a cheese sauce was like a miracle. She also ate a few croutons and a small bite of my mom's birthday cake without vomiting. An offer of a second bite was met with locked lips and a stern head shake, but she ate a bite of CAKE with ICING on it! It was a bit of a miracle, really.
When I step back from the whole g-button thing, quiet my emotions and look at the facts, I know it is the right thing. It isn't taking anything away from her, she'll still be free to eat and drink what and when she wants, but it is giving her an advantage she doesn't have right now. The freedom of nutrition and hydration that isn't a chore. It will do for her nutrition what sign language will do for her communication, it will give her options, insurance. I know that is the truth of it, but the moments where I can disconnect my emotional response long enough to really believe it are still a bit farther apart than I'd like them to be. In between those moments of clarity, I question whether we are doing it for her or for us, whether we are making our lives easier or hers. I wonder if we are trading in the problems we know for unknowns, swapping things like strep and dehydration for site infections and granulation tissue. On this side of the surgery, even though we've made the best decision possible, it still feels like a bit of a gamble. Hopefully once we get to the other side of the surgery, it will just feel like relief, coupled with wondering why we waited so long to go through with it in the first place.
Sometimes KayTar is sneaky. Very, very sneaky.