Thursday, September 1, 2016

The Trouble with Rett Syndrome

After my last post, my father-in-law called and said, "I'm confused! You wrote that Abby is having a good summer and Rob said she was having all kinds of medical problems."

"Yes," I said. "Both are true."

Compared to last summer, she's having a good summer. On the day I wrote the post, she was likely having a good day. She also continues to have bad days. That's the trouble with Rett syndrome. It's not so much the disabilities. You can accommodate for those. It's the medical problems which pop up randomly and often without a solution.

This morning, I could not get her dressed without the two of us both full of tears. She was in pain and I haven't completely figured out the source. There's a long list of possibilities and it could be none of those. Everything is connected to the nervous system and the nervous system frequently malfunctions in people with Rett syndrome.

I have been trying for years to accept the randomness of Abby's symptoms, but I still ride the roller coaster. Every time a doctor suggests a new medication, I think, "This is it. She is going to be fine, now. She will feel great from now on."

But, the bad days come back every time. We continue to work with doctors and other health care professionals to come up with solutions and sometimes, we do. Often, we don't. And there are always new problems. There always will be... until we find a cure or treatment that gets to the core of the problem. 

Abby is fine now, at this particular moment in time. This morning's medical crisis was not any more problematic than previous ones. The problem (for me) was the crushed hope - again. The latest new medication is officially not working. I knew this would happen, but I still had hope. 

I don't know how to accept the randomness of Rett syndrome. Tomorrow, I will start hoping again, knowing it won't last... until we find a cure. Families go through the good days with a constant hum of low-grade anxiety, feeling deeply grateful that things are going smoothly and wondering when the other shoe will drop.

Recently, I was interviewed for an article and asked, "What do you wish for Abby?" I'm not sure I answered very clearly because I thought the correct answer should be "a cure for Rett syndrome". I have this inner conflict between accepting her just as she is and hoping for a cure. I accept her and I do hope for a cure... because the bad days are unacceptable.

And my answer for the article? 
I want people to see past Abby's disabilities to get to know her as the person she is.

I've been following the disability rights movement and I would love to see ableism become something for the history books. But I'll save that for another post.

(Suggested reading: On Radical Acceptance & Not Fixing Your Kid. The Button Man story will sit with me forever.)

Author's Note: I have written a lot about Abby's bad days, but never published the stuff that would really help you understand. It doesn't pass the sniff test for what you should post publicly about your child. Some people would disagree and some people would say I've already written too much. You see, if it's not something Abby would want people to know, it's not going to be published. (Abby is working hard on her literacy development and some day, she will write about her own experiences if she wants to.)

No comments: