2.07.2013

The Cure that we DO have

It's been a long few days. Claire has been up and down and up and down. The days have been filled with seizures. Chloe is getting good at bringing the oxygen to me when Claire needs it, too good at it. This morning, Claire was on the couch as Jared held the mask over her face, Chloe pushed her way through us (we try to not let her see it, even though it bothers her less than it does us) with what she claimed Claire needed. As she draped her beloved blankie over Claire she told us that it would make her better. The truth is, it does. Things like that are what we do have to cope with Rett Syndrome. It was a reminder to me that while I can't take away the seizures or get Claire to talk there is so much that can be done. Today I am preparing to head up to Oakland tomorrow for Katie's Clinic. I believe that treatment in the form of some medication is in our future. I want all of the children affected by it to be ready for bodies that work better, not behind in school because nobody believed in them. The cure that we have today is to live and to live well. For Claire that includes a school that includes her with her peers and teaches her all the stuff that kids her age learn. It also includes time at the beach with friends, indoor skateboarding and our new favorite, wheelchair ballroom dancing. So for now, we press on, working to do what we can because I truly believe that some day soon, there will be a help for her body and you better believe we will be ready for it.


video

3 comments:

Erica said...

i heart you! see you in the am!

Colleen said...

This video was tooo much...I love seeing sisters having fun together!

mj said...

oh sweet claire. and chloe. we miss you all. give everyone in oakland a big hug from us. and give YOURSELF a big hug from us.