Tuesday, September 27, 2011
Edited to remove past suggestion to visit a blog that is now a vehicle to self published products...sorry readers, it was a good post but not worth the flash load and the self promotion.
On to New England living where this family of five has seen a fox, wild turkeys, lived through an earthquake, a hurricane, and faced the first frost on our windows. We traveled over 1,000 miles felt at times a freedom akin to madness as we flew over the rocky pavement of our past to embrace the smooth concrete of our future.
Maybe we thought that by filling a box with the ill-fitting orthotics, the overflowing binders of medical information, the appointment card reminders, the individualized family service plans and the long applications for early intervention services we would never have to live those moments again. As if by the very act of sealing up the physical baggage of our broken hearts we could hide away that particular pain in the dusty corner of an attic somewhere and keep the lid closed forever. But it’s never that easy is it?
But the seams sagged and the joints became jagged and soon CP was spilling all over the seats of our minivan as Greta twisted in pain from the long car trip. Pouring down our driveway as she collapsed over and over unable to traverse the terrain and scraped a permanent scar into both her knees. Flooding into her bedroom as she woke each morning in the dewy sunlight pointing to her left (affected) side crying “boo boo, boo boo, owie” clearly becoming frustrated with her tightly curled tone and her body’s refusal to listen to her demands.
Cerebral palsy is a like a spell that is impossible to break.
It can’t be broken by outrunning it, nor removed by ignoring it. No amount of brand new purple sparkly curtains or new adventures to be had or cool breezes off the coast could stop its daily presence. And really what fools we were to think it could. Truth be told, neither of us did, but it was fun to think that for a moment we had outsmarted this damn debilitating disorder, even for a moment.
When reality hit it wasn’t with a jolt, like that day back in January staring at her blotchy MRI, it was with resignation. It was with sighs that it was time again to call the services, make the doctor appointments, locate the providers, weather the blank stares and let go of a silly daydream of living a normal life. We belong here, firmly in the land of not okay, but it sure was fun to run away, even for just a little while.
Greta, I have no doubt you too will want to run away someday. Heck, I remember running away from home at five years old, sheet trailing behind me, arms clutching my important dolls because my mother had done something so unforgivable (something of course I can no longer remember) that I had decided I was moving to the park. Like all moms she not-so-secretly followed me and soon I decided to come back home. I will follow you Greta, if you try to run from this life. Whether you run away from home because I embarrass you at a PTA meeting or you run away from home because you just can’t face one more day in a body that won’t listen to you and running is the only thing you can think to do I’ll be there to help bring you home… when you’re ready (and okay okay I’ll stop wearing those shoes to the PTA meeting, fine!).