"Use all of your fingers."
Five fingers. Five words. Repeated over and over from me to Ella. I say it to her all the time. She complies when I say it yet quickly allows the SMA to inhibit her "finger function"...she uses the pincer grip constantly.
We stretch her hands, do OT type activities with her, and remind of how best to use those ten fingers on her hand. Often I feel it is to no avail. In the midst of being 4½ years old she hasn't the time to think about "proper use" of her hands. She wants to play, to complete a task, to just be. The easiest way for her to do that is to compensate for the debilitating SMA.
SMA. Where on earth did this come from? It was surreal when we first received her diagnosis and that hole in reality has matured into a crater in our lives. Seemingly consuming all in it's circumference as it widens unending. We step back out of the way, keeping Ava, Henry, Ella, and each other from slipping off the widening sides into the abyss it presents. To take your eye off of the increasing crater-hole to look at the world around us...the world that keeps eluding us, the world that most people live in and enjoy...to take one's eye off to gather a glimpse is dangerous...for the hole widens and grabs at your feet...partnering with gravity to pull you in.
The crater can only get to be so big and then the ground underneath our very feet will begin to crack. Solid ground becomes sparse and a balancing act ensues. It's tiring, trying, and tumultuous at best.
As we hold on to one another, circumventing the enveloping crater before us in attempts to stay on solid ground we have carved out a small corner in which we can run to...Ella's Corner.
Ella's Corner is a place where we can gain a solid footing; a place where we can bridge the gap between our world, which is riddled with craters and cracks, and can meet the world we were pulled from in August of 2011. A place where anyone who reads can take a peek, lend an ear, speak from wisdom, or simply gather a fleeting moment of our lives.
There will be a time when the black hole of SMA is closed forever, yet the scars it will leave shall echo through our individual eternities.
