(this was shortly after we put up our tree)
Christmas 2009 came just 46 days after learning that Avery had tested positive for Rett syndrome. I was still waking up in the middle of the night and immediately thinking: "Avery has Rett syndrome. Rett syndrome?" After looking back at my posts from this time last year, I can see that I was trying really hard to feel, no, to appear "normal". I was using an awful lot of exclamation points!!!!! It all comes across like "heyeverythingisokoverheresodontworryaboutusonebit!"
When in reality I was so scared and confused. Im so glad I blogged about it all because otherwise Im not sure I would remember it. It all seems a little foggy in my memory. It's because everything had changed but really it was all still the same and that's just a strange feeling to have. I had so much on my mind-trying to figure it all out, seeking out people to help, researching, making Dr.'s appointments, firing Dr.'s for doing their jobs poorly, getting new Dr.'s and going to those appointments. I think I was also doing a lot of trying really hard to make other people not feel badly for us. I didn't want to feel badly for us-so no one else should have either. That's what I was thinking. But things were different last year. See Avery holding that DVD in her left hand? She cannot do that anymore. It's not possible. And even though I knew that could (probably would) happen-that Avery would lose some if not all hand function-I still have a hard time believing it did. Im so happy she can still use her right hand pretty well for now and is picking up certain toys and can hold her fork (with lots of encouragement). Last year she wasn't taking a single medication (maybe for allergies) and now she takes 4.
(christmas morning, holding a new DVD in her left hand)
But she is still just as happy (for the most part) and even prettier-if I could just get my nice camera fixed Im sure I would get more proof. It takes a quick shutter to get a shot of her smiling when she is moving around at warp speed. And she is getting some of her words back-in fact we just heard BUGGY today several times. So no feeling badly for us now either!