An excess mirror was placed by the front door recently, leaning against the wall in a distinct about-to-be-discarded manner (it had earned this status being of some Luna Park genetic line: it reflected a lumpy, ten-kilos-heavier form. No, I haven't suddenly put on that much weight! It was the bloody mirror.).
Racing about the house in my usual frantic manner, phone calls, and questions and work, I overheard Jack quietly chatting to someone...
"And this is how I play Wii Sports Resort Sword Play...like this..." I'd hear him expelling breath unevenly for a few moments, "..and like this.." More effort was being spent.
Glancing about the corner, my son had positioned his wheelchair right in front of the defective mirror.
Jack has spastic quadriplegic cerebral palsy. He acquired a brain injury as an infant and this is the life sentence he now lives with. Unlike a standard quadriplegic (whatever that is) Jack's entire body, head, neck and face too, is affected. For the most part, Jack fights what is known as "reactive tone": he will make the decision to move, his body will then spasm and fight it, and he then re-makes the decision and uses multiple times more energy to then move that limb. And this battle is undertaken for everything: eating, breathing, swallowing, let alone standing, rolling, etc. 24/7.
A very intelligent boy, my son is trapped inside this non-compliant body for this life.
His sweet voice, quiet and focused, was now holding my attention...
"Jack can do this. Watch now..." and again I would hear his quiet, resolute efforts in action. I darted another look around the corner...
Slowly, deliberately he was moving his arms, fighting more truly than I've ever seen before in his life the fierce spasticity that traumatises his body at the merest suggestion of movement. Watching himself intensely, he was guiding his moves as deliberately as he could, counting each centimetre of success, perusing the process of movement.... then suddenly, no warning, his body would defy him, throwing his musculature into a spasm, contorting his action, defying his will... his face showed the betrayal.
He'd then calm his physiology and take a deep, saddened breath... Stealing another look around the corner, Jack's head had dropped and he gazed soulfully at his feet for a few moments.
Another deep intake of air was heard as he lifted his head, his eyes meeting his own in the mirror again...
"And this is how I play Skydiving on the Wii..." never taking his eyes from his actions, he moved as though timed in a Chi rhythm, "Like this...and I go this way," changing direction, his body flew into spasm again, shredding his form, robbing his journey...
His process of recovery undertaken again, his disappointment in his retaliating system was devastating. No tears. No complaints. No cries of "It's not fair!", even though it isn't.
In the intake of air as he lifted his head again were barely audible words, "Try again Jack."
And again he met his eyes in the reflection.
"This is Skydiving..."
As I type, unable to leave, mesmerised by this unfolding, my mother heart aching, aching,
Jack continues his reflective journey before the mirror...he's been going for 47 minutes.
My beautiful, patient, resolute son is the most courageous of people.
Melissa Hocking 2010
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