On Monday we knew our life had become drastically different than we had ever imagined it would be. Today blew Monday completely out of the water. I feel strangely detached at the moment, like all of this is happening to someone else's daughter...like shock a little I guess. And I'm exhausted. I'm sure that I will certainly elaborate on the appointment and my thoughts and feeling etc. later on, but for right now I just want to relay the two main and most heartbreaking things we learned today from dear, kind Dr. Coffman. As we were beginning he said that some women with Rett syndrome have lived into their 40s. When I asked how long they generally live, he said twenties or thirties. No website said anything about this and he said because the websites shouldn't. As Lucy ages, she will continue to lose functioning throughout her body. The gene mutation causes the brain to deteriorate which causes health problems such as trouble breathing because the body is no longer able to function. The complete deterioration will hopefully take a long time, but he said she will eventually not be able to walk, if she is ever able to, talk,use her hands,etc. and once she loses the functioning of something, she will never regain it.
So, it seems like we have her for a limited time...we didn't know that before. I don't really know what else to say at this point.
Julie - Mandy told me tonight about your blog. I'm so very sad to think about your words and the diagnosis for your daughter. But at the same time, I found it very heartening to read how many people -therapists, doctors, etc -you have on your team, working with you to help Lu grow and learn and for you and Chad to learn more about how to help her too. Knowing your family as I do, I'm sure you will agree that they too are and will continue to be an excellent support system for all of you as well. Although the trials you have and will continue to have with her may be many, may be hard to understand, to accept, to cope with, the one thing you won't have to worry about is not loving her -and that's the most important thing of all, isn't it? Your attitude about that comes through very loud and clear in your posts and will be what she learns and understands from you too. Just wanted to tell you to keep the faith you have in yourself to determine how to move forward when you get bombarded (or so it seems at times) with a wide variety of ideas and methods. (I have a blog too and write from time to time about things pertaining to Mandy's children and autism.)
ReplyDeletePeace and love.