Below is a blog posted by another parent who has a daughter with Rett Syndrome, I could not help but post it here because these are my exact thoughts and feelings, one month after Elle has been diagnosed. I could not have said it any better.
“Unless – There’s so much hope, potential, and possibility contained in that word. But also risk and uncertainty. Unless we try, we’ll never know if it can be done. Unless someone’s prepared to stick their neck out, nothing will ever change. Unless we do it, who will?
For as long as I’ve known about Rett, I’ve been waging a personal battle with the whole business of ‘acceptance’. Initially it was a simple case of struggling to accept that this thing had happened to my daughter, and this was the direction our family life had taken. Then, as I learned more about the condition and the research, I realized that it wasn’t simply about adjusting my attitude – but that Rett syndrome itself might change. That some extraordinary work is going on in labs around the world, and girls like Amy might one day be unlocked. That proper, serious, clear-headed people believe it’s possible.
Knowing that, how could we tell ourselves that Amy is ‘meant’ to be this way, and that Rett syndrome is inseparable from who she really is? It became clear that it’s entirely possible to love someone the way they are, while also fiercely wanting them to be set free of the thing that holds them back…..Lots of people were kind enough to tell me they agreed, and one friend introduced me to the word ‘acceptists’ to describe those who would try to convince us that accepting our children means accepting that we shouldn’t want to ‘fix’ them. (Like anyone would ever say that to a parent whose child had cancer or similar.)
Unless we say this – unless we imagine what living without Rett syndrome would be like for the children (and adults) who have it – unless we raise the funds to support the scientists who are working on the thing that means more to us than anything else – unless we stay focused and avoid getting side-tracked by trivia – girls like Amy will stay trapped. We don’t have to accept. And we shouldn’t.”
– Catriona Moore, November 26, 2012