Today is the 2-year anniversary of Violet's diagnosis with Rett syndrome. I don't really know what more to say about it. Last year, I dreaded the day as it approached, some ominous anniversary hanging over our heads. We were supposed to go to the birthday party of the 2-year-old daughter of some very dear friends. I declined, explaining I just didn't know what I'd be able to do that day, but I knew I couldn't go to a little girl's birthday party. Our friends graciously understood. And to be honest, I can't really remember what we did that day. I think we just had a quiet day at home, just the four of us. I just remember I was so glad when it was over.
It wasn't much different this year, except that I didn't really anticipate the day quite as much. It is almost 6 p.m. and Noah and I haven't even discussed the fact that today is that day. I'm not even sure he realizes it. We've been too busy doing what we do most Sundays: Tending to children while doing odd chores and trying to relax. We had donuts for breakfast, read the paper, talked about Star Wars with Calvin, went to lunch at a great pizza place where we discovered Violet loves suppli (yummy little cheesy rice balls). I guess we fed her way too many, though, because she threw up when we got in the car. Noah and Calvin went to the auto show. I went home with V, Grammy helped clean her up, and here we are.
I know I will never forget that day, the day we found out our girl's life would never be as expected. Nor would ours. I was sitting in my little Subaru, waiting to pick up Calvin from preschool. I had a babysitter who watched Violet on Friday afternoons, so Calvin and I could go to lunch and have some one-on-one time. I was trying to figure out what we would do when my phone rang.
We had gone through months of testing for Violet for various disorders, and they'd all come back normal. So I wasn't surprised to see the neurologist's phone number, and I wasn't particularly worried. She asked if it was a good time, I said it was. She told me the results of some kind of routine bloodwork we had done, all of which had come back normal. We had taken the Rett test only the week before, but we were told not to expect results for a month or so, so I wasn't really expecting any results. I sat and watched Calvin and his classmates start pouring out of the preschool building. The doctor started talking about Rett syndrome, about all the reasons she had thought Violet didn't have it. And then she said, "Unfortunately, Laura..." And I knew.
It is hard to describe that moment of realizing something or being informed of something that will forever change your life, and your daughter's. I could hear my heart pounding in my ears, and I thought it would explode and I would throw up all in one moment. I remember I just wanted her to stop talking. I wanted to throw my cell phone out of the window. I wanted to run.
But at the same time, I saw my smiling four-year-old running to the car, chaperoned by his teacher, who by now had realized I wasn't getting out to come get him. His backpack bobbed along behind him. It was like everything was normal outside of the car. But inside, our world had forever shifted.
So I will never forget these details, but I suppose I don't really revisit them as much. I dreaded the anniversary of that day last year because, I guess, I had expected some monumental change to happen in one year. That we would have accepted Rett syndrome. That we would have adjusted our life as need be. That we would have a plan. We didn't.
We still don't really. We have made progress, I guess. And there have been changes, for sure--some of them good, some of them just different. Violet started school, and it seems to be going well. We know a lot more about Rett syndrome, although we still have lots to learn. We have connected with a network of specialists. We've met a lot of amazing families who are dealing with the same things we are. We are trying to get Violet a computer to help her communicate. But she is also getting bigger and not yet walking, so we are constantly reevaluating how to transport her, assist her PT, get her dressed in ways that are comfortable for everyone. It is still hard to see typical girls her age.
And these are things we will probably have to deal with in one way or another for the rest of her life. So I guess I've stopped expecting big breakthroughs and am trying to accept the ebb and flow of things. There are a lot of good things that happen in our life, and a lot of not so good things--some related to Rett syndrome, most of them not. Taking stock can be difficult and not always helpful. I am trying to focus on Violet's individual pace and internal developmental calendar, and not watch the years go by, expecting anything specific. I am trying. But it is very hard.
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