Two weeks before Calvin’s birth we learned that the lateral ventricles in his brain were enlarged, though no one could tell us why. After a premature emergency cesarean Calvin battled the consequences of cerebral palsy, global hypotonia, slow gastric emptying, ocular and cerebral visual impairments and gross developmental delay. As the days, weeks and months passed our son’s future seemed increasingly bleak to us.
Then, when Calvin was just two he was diagnosed with epilepsy. We had already grappled with immense grief, loss, disappointment and worry over the well being of our child, but the seizures and drugs proved to dwarf everything we had encountered up until that point.
A year or two after scores of seizures and several failed antiepileptic drugs a friend told us about a play at the Mad Horse Theatre in Portland. It was called A Day in the Death of Joe Egg. It claimed to be an extremely black comedy about the struggles of a couple whose only child, Josephine, or Joe, suffered from severe cerebral palsy and “fits”, or rather, epilepsy. Michael and I were slightly dubious about such a sensitive subject being labeled comedic, but we sorely needed a night out on the town and a good laugh. Maybe it would help put our situation in perspective, we thought.
The theater was small, a square stage centered between three sides of tiered seats. As act one began the audience seemed gagged, a few lonely chuckles escaping into the silence—a titter behind us, a muffled snicker cutting the hush of darkness from somewhere down in front. Out of the corner of my eyes I panned the dim house of drawn, sober watchful souls sitting upright and military in their seats, hands clasped hidden in their laps. I wondered how many of us had children like the little girl in the play. She was beautiful and lithe, with long blond hair brushed straight and shining like a sheet of waxed paper, her small still body enfolded awkwardly, slanted in her cumbersome wheelchair. Her slippered feet turned askew in their rests, blue eyes staring off vacantly into the distance. I wondered if the others knew what it was like.
After the first act I breathed deeply and exhaled slowly. It was hard to watch, though validating, and the release of laughter helped to relax my tension.
Then, suddenly, I was shocked into silent tears. Just as the lights were coming up the little blond actress skipped onto the stage announcing the intermission. I swallowed hard. The harsh juxtaposition of what had been a limp, listless child, imprisoned in her wheelchair, so abruptly and unexpectedly come to life in a rush—and with such vigor—then to practically taste the crisply articulated words flowing from her blushing lips, was stunning and bewildering. This is how she should be, I said to myself, this is how all children should be. It’s not how my child is or will ever be. My heart was struck solid by a blow from behind and I wasn’t sure how I’d recover.
But Michael and I both made it through—and changed—forever changed by the little blond girl in Joe Egg and by our own precious Calvin, no doubt beautifully asleep waiting for us at home.
Then, when Calvin was just two he was diagnosed with epilepsy. We had already grappled with immense grief, loss, disappointment and worry over the well being of our child, but the seizures and drugs proved to dwarf everything we had encountered up until that point.
A year or two after scores of seizures and several failed antiepileptic drugs a friend told us about a play at the Mad Horse Theatre in Portland. It was called A Day in the Death of Joe Egg. It claimed to be an extremely black comedy about the struggles of a couple whose only child, Josephine, or Joe, suffered from severe cerebral palsy and “fits”, or rather, epilepsy. Michael and I were slightly dubious about such a sensitive subject being labeled comedic, but we sorely needed a night out on the town and a good laugh. Maybe it would help put our situation in perspective, we thought.
The theater was small, a square stage centered between three sides of tiered seats. As act one began the audience seemed gagged, a few lonely chuckles escaping into the silence—a titter behind us, a muffled snicker cutting the hush of darkness from somewhere down in front. Out of the corner of my eyes I panned the dim house of drawn, sober watchful souls sitting upright and military in their seats, hands clasped hidden in their laps. I wondered how many of us had children like the little girl in the play. She was beautiful and lithe, with long blond hair brushed straight and shining like a sheet of waxed paper, her small still body enfolded awkwardly, slanted in her cumbersome wheelchair. Her slippered feet turned askew in their rests, blue eyes staring off vacantly into the distance. I wondered if the others knew what it was like.
After the first act I breathed deeply and exhaled slowly. It was hard to watch, though validating, and the release of laughter helped to relax my tension.
Then, suddenly, I was shocked into silent tears. Just as the lights were coming up the little blond actress skipped onto the stage announcing the intermission. I swallowed hard. The harsh juxtaposition of what had been a limp, listless child, imprisoned in her wheelchair, so abruptly and unexpectedly come to life in a rush—and with such vigor—then to practically taste the crisply articulated words flowing from her blushing lips, was stunning and bewildering. This is how she should be, I said to myself, this is how all children should be. It’s not how my child is or will ever be. My heart was struck solid by a blow from behind and I wasn’t sure how I’d recover.
But Michael and I both made it through—and changed—forever changed by the little blond girl in Joe Egg and by our own precious Calvin, no doubt beautifully asleep waiting for us at home.
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| A Day in the Death of Joe Egg |
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