I can finally watch videos of Caroline as an infant and smile. I no longer think of our first year with Caroline as some kind of delusion. I used to feel like we had lived that entire period under false assumptions. How could I have been so foolish? I blamed myself..and I blamed life.
I still feel a little sorrow when I watch those older videos. But I can also appreciate the sweetness and the joy. Those moments are still part of Caroline's history.
Here is a short compilation of some of my favorite videos.
Rett Syndrome has left Caroline, now 3, with the fine motor skills of a 3-month-old baby. Even though Caroline is unable to walk or talk, her hand movements tend to be my constant reminder that she has Rett Syndrome...maybe because they were my first real glimpse that whatever she had was serious. During the weeks leading up to the diagnosis, I remember desperately hoping/wishing the movements would just go away so that I could get my "old" Caroline back and forget that this Rett thing was ever mentioned to me.
As I've mentioned before,"little" moments go a long way for us. I had a sweet one first thing today. On the weekends, Mike usually brings Caroline in around 5am to sleep in with us until about 7am. This morning, I woke up to a little stinky hand grabbing my nose (accompanied by some mischievous giggles). This seemingly "simple" movement was actually quite a feat for Caroline. She was purposely and successfully grabbing my nose. I think she was laughing because she knew she was being silly and because she was proud of herself. Mike and I just smiled at each other. Sometimes, I take for granted that I have someone who just gets the significance of even the most subtle moments.
I am inexplicably drawn to Caroline's hands. I am always touching and kissing them. And I still catch myself staring at her hand movements. Sometimes, I feel a pang of sadness. Often, I'm just puzzled and curious as to what it is about her condition that causes this strange and involuntary behavior. I also wonder what she thinks of her hands...about what they do and don't do.
Here's a video of Caroline's hand movements without the arm braces (on the video monitor). They are constant. They begin the moment she wakes up and only stop when she sleeps. Her arm braces help interrupt the movements, particularly the hand mouthing.