I had an exciting day today. My friend Elizabeth has Rett Syndrome and can communicate. She came to my house today with her parents for a visit. I was so happy to see her. She moved into a grouphome last summer, so it has been a big change for her. She uses facilitated communication to communicate too. I emailed her and asked if she would like to share some of her experiences with Rett. It was so fun to have her say she was ready to share her life’s experience with Rett! She was so shy before and didn’t feel like she wanted to share her thoughts. We are working together on a blog entry. It will take a little while but I hope to see her next week to have her approve the entry.
It was so good to have both of us in the same room trying to figure out how to best explain our experience of waking up at night. We both struggle with it. She screams which I don’t do, but what we are feeling while in bed is the same. It was wonderful to be able to share that with each other and have our parents ask questions. We will be writing about that. I think it will help all of us, as well as other Rett families. If she allows it, I will post a picture of us together.