We are better, sort of

Last post I wrote about how we had been knocked down pretty hard but that we are getting back up. So it makes sense that a lot of people have been asking me lately, “Is Claire feeling better?” It is a reasonable question. It demonstrates that people care, but I haven’t known how to answer it. We aren’t in a hospital. She is eating. So part of me says that the obvious answer is “Thank you for asking, she is so much better now. We are doing great!” Then I think about it a little more. While she was sick a lot of the issues that we have due to rett syndrome subsided. It feels horrible to say that there was an up side to having the flu and pneumonia but there was. While she was sick there were no seizures and no dystonia. There was no twitching and although her pulse ox was alarmingly low, she didn’t actually stop breathing like she typically does. Now that she is better, that fun stuff is back with an added dose of intense sadness because she hates having rett syndrome, it’s amazing…not really. One of Captain Awesome’s friends put words to this that pierced my heart. He said, we have to remember that your good is still worse than a lot of our bad days. It’s a true statement and for some reason I struggle with it. Much like I struggle with the ‘is she better question?’ I so badly want to answer that everything is fine. On a level it is. She has rett syndrome and while that creates a lot of obstacles she has a very full and often satisfying life. However, even with lots of good stuff, Claire has more health challenges than she wished she did, hence the sadness.  We really try to focus on life not depending on Claire’s health in order for everything to be fine. If it did, I don’t know that I could ever give a satisfying answer. So maybe it’s the question that is what really bothers me. The answer to a question with regard to Claire’s health is never going to be a good one. If the question was more in the direction of how are you I would have a much better answer. Something along the lines of; even when everything is really messy and hard, I have such comfort and peace, as much as my soul grieves these circumstances, I am alright and that is such an amazing thing to experience.

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