Caroline had always struggled with her pincer grasp so up until the time of the video, instead of appreciating what she had, I was focused on the development of her fine motor skills. I learned a valuable lesson. With Rett syndrome, it’s hard not to worry about the next decline or lost skill, but I’m now doing my best to really be “in the moment” and appreciate and savor the little things she is able to do. Caroline makes that a lot easier. She has an incredible ability to really draw us into her world. Spending time with her melts a lot of the sadness away.
This blog entry is a bit difficult for me to write because I really do try not to focus too much on what is lost, but I felt it was important to explain this effect of Rett. Caroline is still a happy child. She appreciates some of the solutions we’ve found to help her continue to enjoy playtime.