Tuesday, January 29, 2013

The hands...

A lot of things about Rett Syndrome suck. All of the things I guess, but I said to Chad last night it would just make such a difference if even one symptom could be "treated" or "cured". My pick would be the hands. Luckily for us Lucy has not experienced seizures, or pneumonia, or not being able to eat on her own, otherwise I would probably reconsider my choice. We still have hopes that someday Lu will be able to walk in some capacity...she does now a little bit at a time with us holding under her arms. There are amazing ways that she can communicate without being able to speak. But those damn hands! They break my heart!

What if she could feed herself? What if she could play with all of her toys and play pretend? What if she could color and draw, and paint and turn the pages of her books again...all without someone else's help? What if she could do something as simple as brush the hair out of her face, or itch her nose, or fix her clothes if they are bothering her...but she can't do any of those things by herself. She made some beautiful finger paintings the other day, and she can color using the universal cuff I have shown in a picture before. We colored a picture using the cuff the other day and she started really moving her hand with the intent of coloring, which she has never really done, and she was just so proud of herself and so excited! And of course I was over the moon! She usually seems pretty unimpressed with the idea of coloring, but I keep trying it with her and when she finally realized she was controlling the crayon and was making color on the paper I think it clicked with her!

I just wish it would all go away. I spend most of the time being as un-mad as I can be and then like I have said before, it'll just sneak up on me and I get ticked and this time I am especially mad about the hands! But, as usual, we will just keep trying to find ways for her to do things in spite of those hands and in spite of Rett Syndrome.

No comments:

Post a Comment