It’s late. The sun has long set and Evie has surrendered to
sleep. Her body is the most pliable when she is asleep. She doesn’t fight me as
hard when I work with her legs. After years of sitting, her knees have become
stiff, not too bad though. I’ve seen much worse. It makes it difficult to get
an accurate measurement of her length. I start working her legs a little bit
doing some of the movements I have done during my gym classes. I guess I hope
it will loosen the tightness. It probably won’t. But I try anyway.
Up, in, out,
down.
Over and over. Smooth and slow measured movements. It’s quiet. I’m left
to my thoughts while my hands manipulate her legs. I realized I’m living a
comedy routine once aired on Amy Schumer’s show years ago. It was a bit about
not really wanting to work out and if you were rich enough you could just pay
someone to move your body for you. People laughed in amusement. In this moment,
it is not as amusing as I may have thought 9 years ago. I must help my daughter
move her body. Everyday. We attend therapy where other people help her move her
body. When she is in school, her teachers, aides, and therapists help her move
her body. If we don’t, muscles grow weaker, they shrink, they tighten, they
hurt, and skills we fight hard to maintain slip away.
Up, in, out, down.
A pang
of sadness washes over me as I move her legs. What would these legs have done
if not for Rett? Run up and down a soccer field? Help her twirl in a ballet
recital? Propel her onto the pommel horse at gymnastics. How many scraped knees
would I have kissed and bandaged by now? Would she have used those legs to
steal a base during a ballgame? Climbed the spiraling steps of a lighthouse?
Will they stay strong as she ages? Will they ever be strong enough for her to
stand? Take a step?
Up, in, out, down.
First the left, then the right. Moving
her legs to the soft sound of her even breathing. I finish exercising her,
start her tube feed, and tuck her in bed. She stirs a little, but her eyes
never open. She is completely calm and unnaturally still. Sleep is where she
finds the most peace and where I find myself the most restless. The morning
brings another day of helping her move and live the best life we can offer her.
