I’ve been asked in various capacities to create number of timelines in the past three months. What I created had more in common with a police report than an attempt to capture a piece of time. So what would a real timeline look like?
The Timeline of a Stroke:
It was easy at first, privileged really if I were to be honest. We lived a glitter speckled life where white carpet expanses unfurled into manicured lawns and we dreamed together, out loud, in a bed that looked, as much as it felt, exactly like a cloud.
It was harder, a little. When the contours of the ceiling, set at improbable angles, echoed our infant son’s cries letting them bounced across the house like June bugs and driving us to bicker over bottle washing and laundry folding when the sleep deprivation became too much.
It was scary, magical in a way. When a family of three became a family of five in a bloody battle waged on a stormy day in April below the Mason-Dixon line.
It was hilarious, actually. When everyone cried at the same time, when we propped bottles under our chins and between our toes, turned up the music to find the exact level of cacophony equal to silence. We were given brief gifts of filtered sunlight through our old hickory trees on the rare cases when we managed to find the magic to please everyone, even if only for a moment.
It was dangerous, really. To begin asking those questions of our own child, like dropping packets of sugar into a gas tank. No going back. No more nice. No more real smiles now.
Then it when it was over and done, we sat thinking, “what do we do now”. A life that feelt motionless, like a stuck clock, refusing to move and let us go.
It was relentless, the idea of peace a good joke now. Sleepless nights, untold havoc on me, on mommy Shana, on us all as we tumbled through days filled with appointments and therapies and dashed hopes like acrobats. We performed our parts as if actors in a play all the while trying to camouflage the damage and still keep breathing.
It was foolish, maybe, as we fled it chased us, over 1,000 miles away to escape, and all that emptiness between us when we sat wondering what back in our little home painted like a map had found a way to nestle into our bones as we worked to build this new life knowing now we would never be able to let go.
It is forever, perched there now. Enough for me to see, visiting every day at the most inconvenient times, in the most inconvenient places.
It is reality, eternity. Slowing down a racing boy to make him wait for his stumbling sister, buying a plastic pool with a slide not even thinking she can’t use it (making mommy Shana rush that very day to find her a purple pool of her own, with a heart only I know was broke, absolutely broke, by Greta’s frustrated tears and what must have felt like Shana having forgotten her) Letting the medical collector calls go to voicemail, listening to her lilting narrative of how the doctors cut her leg open and how her hand won’t work, making space for her in this world through our work and advocacy only to be told our pain won’t fit into the mold of what a good mother looks like. Hating people, hating that I hate people, hating that I hate myself.
Saturday, September 22, 2012
Tuesday, September 4, 2012
Today is world cerebral palsy day. Do I wish one a happy world cerebral palsy day? Is it something we celebrate? Of course not, but the mischief maker in me does wonder what would happen if I did something on this day other than think about cerebral palsy?
What if instead of finding time to fill out my daughter’s disabled parking placard application today (seriously, are they ever going to just give us a permanent plate?), or rifling through files to find that one doctor, that one time, who accurately diagnosed her vision problem so I can follow-up, or trying to discern whether our new insurance policy is better or worse I instead used that time to make scrapbook pages for her dusty baby book parked high and untouched on our closet shelf?
What if instead of making sure Greta’s leg brace sock matched her dress so that her preschool teacher would find her cute, instead of intently scrubbing the ice cream (I kind of let her eat) for breakfast off her face, instead of taming her crazy curls I just shoved her feet into some rain boots and let her jump in every puddle she could find on this rainy day?
What if instead of spending all night trying to understand the medical neurology articles I dredge up regarding chronic periventricular hemorrhage, the functionality of the corpus callosum in one's brain, or the causes of infant stroke I instead commented on people’s Facebook posts?
What if I stopped trying to construct a careful narrative to help explain to her, and you, and everyone else and just shrugged it off as a funny quirk -this stroke- maybe it wouldn't hurt so relentlessly?
Well, I guess that last one is a little too far-fetched even for this dreamer. But maybe, just maybe, world cerebral palsy day could be something else for me, if not for our little family. A day to stop thinking about cerebral palsy.