rettsyndrome.org

Image Map

Thursday, July 7, 2016

ten

Avery's third birthday was the last one she had before rett syndrome came into our lives. The post I wrote about it was so different from the one I wrote just one year later. At 3, I was worried people might notice she was different or quirky.  We had a party with her preschool classmates and some friends.  It went extremly well.

By the time she was 4, we had had the rett diagnosis for about 8 months. That post has a different feel to it. There is a sadness there and even some anger. We weren't having a party because there were no real "friends" to invite.  I didn't want go through the motions for our friends kids because the differences between their kids and Avery were so very noticeable at that point. It would have been a gut punch so we skipped it and did a family party at our house.

But, her  5th birthday was a huge success. And after that it wasn't such a huge deal.

Ten, though? Ten is big.

Double digits. TEN.

But that isn't the only significance this birthday holds.
Soon after Avery was diagnosed, maybe a week or so after, I was lying in bed trying to sleep.  My mind was racing with so may thoughts. Terrible sad thoughts. Then I had what I can only describe as a vision. I saw Avery as a 10 year old. No idea how I knew she was 10 but I did. She was ok, she was free, she was fine. She would be ok.

Maybe I hung on to that thinking we would have a "cure" by the time she was 10. Ok, I did hang on to that.  I did. And no, we don't have a cure.  But we have come so far! We have trials and research and amazing things and amazing people on our side. Things are moving quick. Way quick.

And you know what? We ARE ok. We truly are. And Avery?  She is still a happy, giggly lady.  For all her challenges, though they may be mild in the world of Rett, she is so resilient. She is so strong.  She has taught us to be strong as well-to cherish every moment.

I can't wait to hug my goose tomorrow morning, to give her some presents.  My ten year old goose. We will celebrate her with her friends and our family on Saturday at the pool of course. Sunday we will get her ears pierced.  She is pumped. So are we. We have come so far. There is much to celebrate.