Friday, July 02, 2010

Dancing Shoes, Little Red Suitcases, and the Courage to Write

We're heading to Nashville soon for the National Little People of America Conference. My little red suitcase is nearly filled. It's waiting on the bed for a few last-minutes toothbrush, my slippers, my journal, a book, and notes for a new project.

It's a story I began years ago while studying for my MFA from Vermont College, but I didn't pursue because I didn't have the courage to write it. Now, it seems, my muse is ready to face that dark attic; so, in the notebook will go. Then it's down to the kitchen to finish gathering up the rest.

On the to-do list there:

1. Mobile medicine cabinet and equipment--some of it for P & I, most of it for E who requires round the clock meds and monitoring for various conditions.

2. Portable pantry and cooler--again, most of it for E, whose sodium-restricted diet (she can have 1000 mg or less a day) requires MAJOR creativity on the road.

3. Service dog gear--for E's service dog Jewel. Food, check. Bowls, check. Leash and a couple toys, check, check. And, lots of baggies for poop patrol.

4. Dancing shoes--The conference will include meetings with physicians who specialize in E's form of dwarfism. We'll also hear from people on the cutting edge of research on primordial dwarfism. There will also be frank talk with physicians and families about the sobering prognosis for anyone with this form of dwarfism.

The hard reality is none of the boys have lived past twenty and less than a handful of girls have lived to 25. E is 18. I imagine if any one of the parents in our group stopped long enough to think through the short time God has loaned us our children, we'd find it hard to get anything done. Which is why we need the dancing shoes.

There's a dance at the convention each night. The girls have packed a dress for every one of them.

And we've all packed our dancing shoes.

1 comment:

Michelle Sussman said...

Big hugs!!!! You are all so lucky to have each other. :-)