Saturday, March 29, 2008

saw my first rett girl today

There is one other girl in our small town with Rett Syndrome. I've been hearing about her - she's 10 or 11 and our OT works with her. We went to a birthday party today and apparently this other girl is the cousin of the birthday girl's mom. My first clue it was her was the hands - I'd been told they were stuck in the fetal position and I saw hers were.

I didn't even talk to her parents because I didn't know what to say. What I wanted to do was ask them what she was like when she was Riley's age. It's hard to relate, I guess. Riley is very different from this girl and who knows what she'll be like in 7-8 years.

It did make me feel a little better though. Lately I've been thinking about what it's going to be like after Riley isn't a cute little 2-3 year old anymore. But this other girl looked so sweet sitting in her mother's lap, and it didn't look strange to me at all to see her mom carry her out of the building. I have two other kids who are always on the go and never want to sit on mom's lap for too long so I guess one positive is I'll always have a little snuggler with Riley.


Brooklyn said...

It can be hard sometime to think about the future and what it might be like with our girls. To be honest I try not to most days. I guess it is a good thing that they keep us so busy day to day - that is all we really have time to focus on! Whatever the future brings....we can get through it together.

Avery said...

Erin, I know that from my experience with Cole and his autism, I loved when people asked questions. Im sure her parents would have been happy to talk to you. The same way that Kelly is happy to answer our questions!

I too cant help but wonder what the future will be like. But I have learned that if I focus too much on what is to come, I will miss who Avery is now!