calvin's story
Showing posts with label preemie. Show all posts
Showing posts with label preemie. Show all posts
4.03.2013
2.07.2013
gift of hope
Nine long years ago today I awoke in a large spot of amniotic fluid in the middle of the night in the middle of an ice storm. We were all set—we thought—to deliver Calvin by scheduled Cesarean in Boston three days later, but he decided to come on his own ... six weeks early.
The images of that day I recall often, though not in the way I'd expected to remember them, but in a manner close to reliving a nightmare. The Medivac helicopters had been grounded making our trip south impossible. The Boston specialists who had reviewed our case in the previous weeks and who were slated to be by our side during delivery—the obstetricians, the neonatologists, the pediatric neurologists, the pediatric neurosurgeon, the anesthesiologists, even the blood bank donor platelets—would not be there. Instead, my husband and I spent hours explaining in intricate detail what an intricately effed-up brain our son had and how delicate his extraction needed to be.
Calvin survived against all odds. He fought with the CPAP, the IV and its splint when he was just hours old. His Apgar scores were ridiculously low and his heart rate and respiration were dangerously high, two to three times what they should have been. It wasn't until seven weeks later, when he was able to nurse efficiently, that we brought him home from the hospital where I had stayed with him the entire time as Michael shuttled back and forth between there, work and home.
To add insult to injury, Calvin was diagnosed with epilepsy when he was just two years old. He'd already struggled to hold his head up, struggled to see, to crawl, to stand and to walk. But the worst of his struggles have been the endless seizures and the terrible, debilitating side effects of the drugs used to treat them—to mask them—albeit without complete success.
This, Calvin's ninth birthday, will be a day like any other for him. He appears to have no awareness of what a birthday is, of parties and gifts and cakes and candles and wishes. We choose to celebrate his hard fought life by hosting a fundraiser, to which I hope many of you will brave the storm to attend. So today, if you have it in you, please give Calvin the gift of hope for a cure for epilepsy at: http://www.calvinscure.com
The images of that day I recall often, though not in the way I'd expected to remember them, but in a manner close to reliving a nightmare. The Medivac helicopters had been grounded making our trip south impossible. The Boston specialists who had reviewed our case in the previous weeks and who were slated to be by our side during delivery—the obstetricians, the neonatologists, the pediatric neurologists, the pediatric neurosurgeon, the anesthesiologists, even the blood bank donor platelets—would not be there. Instead, my husband and I spent hours explaining in intricate detail what an intricately effed-up brain our son had and how delicate his extraction needed to be.
Calvin survived against all odds. He fought with the CPAP, the IV and its splint when he was just hours old. His Apgar scores were ridiculously low and his heart rate and respiration were dangerously high, two to three times what they should have been. It wasn't until seven weeks later, when he was able to nurse efficiently, that we brought him home from the hospital where I had stayed with him the entire time as Michael shuttled back and forth between there, work and home.
To add insult to injury, Calvin was diagnosed with epilepsy when he was just two years old. He'd already struggled to hold his head up, struggled to see, to crawl, to stand and to walk. But the worst of his struggles have been the endless seizures and the terrible, debilitating side effects of the drugs used to treat them—to mask them—albeit without complete success.
This, Calvin's ninth birthday, will be a day like any other for him. He appears to have no awareness of what a birthday is, of parties and gifts and cakes and candles and wishes. We choose to celebrate his hard fought life by hosting a fundraiser, to which I hope many of you will brave the storm to attend. So today, if you have it in you, please give Calvin the gift of hope for a cure for epilepsy at: http://www.calvinscure.com
 |
| photo by Michael Kolster |
12.28.2012
friday faves - man on the moon
It was as though the sky
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.
The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night
And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.
—Night Of The Moon, by Joseph Freiherr Von Eichendorff
Awake in the middle of last night the full moon appeared as three, each disk diminishing slightly in size and brightness, tripled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.
The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round, topped with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that snaked down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.
“Hi Calvin,” I said to my wee being, smaller than a sack of sugar and stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.
Originally published 01.10.12.
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.
The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night
And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.
—Night Of The Moon, by Joseph Freiherr Von Eichendorff
Awake in the middle of last night the full moon appeared as three, each disk diminishing slightly in size and brightness, tripled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.
The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round, topped with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that snaked down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.
“Hi Calvin,” I said to my wee being, smaller than a sack of sugar and stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.
Originally published 01.10.12.
 |
| photo by Michael Kolster |
3.26.2012
as long as it's healthy
I’ve often heard pregnant women say things like, “As long as it’s healthy,” or, “As long as it’s got ten fingers and ten toes.” I believe they're referring to their indifference about the child’s sex, but hearing their comments always made me think further ... and what if it’s not healthy? Well, mine wasn’t—isn’t.
I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.
Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.
Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.
And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.
But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.
Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.
Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.
I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.
Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.
Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.
And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.
But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.
Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.
Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.
To all of my readers, please share this post in honor of International Epilepsy Awareness Day. You alone can make a huge difference. We do the hard work. You just click a button.
Give to cure epilepsy: http://www.calvinscure.com
 |
| June 2005 |
1.29.2012
1.10.2012
man on the moon
It was as though the sky
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.
The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night
And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.
—Night Of The Moon, by Joseph Freiherr Von Eichendorff
Awake in the middle of last night the full moon appeared as four, each disk diminishing slightly in size and brightness, quadrupled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.
The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that went down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.
“Hi Calvin,” I said to the wee figure, smaller than a sack of sugar, who was stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.
The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night
And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.
—Night Of The Moon, by Joseph Freiherr Von Eichendorff
Awake in the middle of last night the full moon appeared as four, each disk diminishing slightly in size and brightness, quadrupled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.
The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that went down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.
“Hi Calvin,” I said to the wee figure, smaller than a sack of sugar, who was stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.
11.07.2011
milestones
I often remember back to the day Calvin was born, six weeks
too early and by emergency cesarean. The doctors in the neonatal intensive care unit told us he had very
poor muscle tone and hadn’t been able to adequately breath on his own, needed
to be put on a respirator. Calvin couldn’t keep his heart rate down or his body
temperature up. They told us his ears seemed low, his pinkies curved in and
his eyes were too far apart, all signs that he might be suffering some serious
genetic syndrome. My mother has a wide nose bridge, I’d tell myself, he’s a preemie and has shark eyes anyhow. What
do they know?
My memories drift to the first few weeks of his life
when he wasn’t able to nurse, hadn’t yet developed the suck-swallow reflex and
couldn’t latch on, had to be fed predominantly by a plastic tube threaded
through one nostril and into his stomach. After meals he’d arch and scream with
terrible gas pains and burning reflux. He was barely five pounds, hadn’t put on much
weight, and was as floppy as a well-loved rag doll.
At four months of age Calvin began physical therapy,
followed by occupational therapy and speech language therapy when he was just
six months old. During PT we’d lay him down, his tiny arms and head supported
by a neon stuffed fabric worm, an arched play-mobile suspended
above him. Just within reach, and close enough for him to see with his terribly impaired vision, dangled some bright plastic rings, a green frog sprouting striped legs with feet that rattled, and a shiny round mirror, things any infant would
love to bat and swing. But Calvin’s arms remained flaccid at his sides, as
if gravity were a giant magnet pinning them to the floor. Peggy, his PT, had given me a complex
chart of developmental milestones for a child’s first three years. I marked it
with an orange highlighter and dated it in black ink whenever Calvin met any. For
months the chart remained mostly blank. It still is.
The neurologist told us that Calvin was missing as much as
eighty percent of his white matter, the brain’s super highway responsible for
transporting messages between different parts of the brain and his body. He
gave us the grim news that Calvin might never walk, might never talk. My precious son, I sometimes thought, my only child, might
never become more than a blob—a crying, floppy, useless, blind-as-a-bat blob. The image was
petrifying and all too real. But never did the man mention the possibility of seizures.
Then, at the age of two, the seizures came. I'd read about them, the way they can strike anyone without a moment's notice, and especially kids with cerebral palsy, autism, developmental delay, mental retardation and preemies. First, they came
slowly, infrequently, then descended like a cloud of locust in a single day—not
hundreds like some children suffer—only a dozen or so, but they devoured my spirit and shook my
countenance as if it were so, and landed us in the pediatric intensive care unit more often than I'd care to remember. Who knows what havoc they were wreaking on poor little Calvin's delicate brain? And as the fear and reality of the seizures consumed our world, the missed milestones—to a great extent—were forgotten,
didn’t seem to matter. Our child was profoundly ill and no drug, or combination
of drugs and dietary therapy, could stop them—these seizures, like freight trains burning
up miles and miles of tracks in Calvin’s brain.
And while I still grieve the fact that Calvin can’t yet walk unassisted, can’t utter any words, can’t do any task without our
help, those missed milestones have taken a back seat to the relentless
seizures, without which Calvin wouldn’t have to ingest so many mind-altering, sedating,
over-stimulating, dizzying, debilitating drugs, both of which (the seizures and
the drugs) cause him to miss the milestones anyway.
In honor of epilepsy awareness month, please share this story with others. Help bring us one step closer to a cure.
8.26.2011
8.05.2011
the fighter
When Calvin was born he was a little munchkin, not quite five pounds. He was well on his way to being a seven-pounder but he made his way into the world, harshly, six weeks too early. Two weeks prior to that we had learned he was missing a significant portion of the white matter in his brain so we couldn’t risk a vaginal birth, a stress his tiny brain and body might not have been able to bear. Instead he emerged through an incision in my belly, barely able to breath. I didn’t see him until he was twenty-one hours old.
For a period of time within those first several hours Calvin was put on a respirator, a thin tube having been threaded down his delicate trachea. The docs gave him a surfactant to help clear his lungs of fluid. By the time I saw him he was hooked up to a cumbersome continuous positive airway pressure or C-PAP. He was diminutive, a skinny little pup with translucent skin, floppy ears, no lashes and nipples no bigger than a healthy grain of sand.
It was clear that Calvin didn’t like the C-PAP at all, and why would he? He had to wear a knit cap to which each side was velcroed lengths of blue accordion tubing just above his ears. Those tubes carried oxygen and lead to a two-pronged plastic nasal cannula which uncomfortably spread his nostrils allowing the gas to enter his lungs keeping his blood saturated with oxygen.
Just one day old and at least six weeks early (due dates can be off by as much as two weeks) that kid was batting the C-PAP with as much vigor as he could muster, and he managed to yank it out several times. Right then I knew my kid was a fighter. He’s never proved me wrong.
For a period of time within those first several hours Calvin was put on a respirator, a thin tube having been threaded down his delicate trachea. The docs gave him a surfactant to help clear his lungs of fluid. By the time I saw him he was hooked up to a cumbersome continuous positive airway pressure or C-PAP. He was diminutive, a skinny little pup with translucent skin, floppy ears, no lashes and nipples no bigger than a healthy grain of sand.
It was clear that Calvin didn’t like the C-PAP at all, and why would he? He had to wear a knit cap to which each side was velcroed lengths of blue accordion tubing just above his ears. Those tubes carried oxygen and lead to a two-pronged plastic nasal cannula which uncomfortably spread his nostrils allowing the gas to enter his lungs keeping his blood saturated with oxygen.
Just one day old and at least six weeks early (due dates can be off by as much as two weeks) that kid was batting the C-PAP with as much vigor as he could muster, and he managed to yank it out several times. Right then I knew my kid was a fighter. He’s never proved me wrong.
 |
| photo by Michael Kolster |
7.18.2011
boy on a plane
Yesterday was the end of a short week’s holiday in Florida. After tearful goodbyes to Calvin’s grandparents, aunts, uncles and cousins we were dropped at the airport curb.
When we reached security a nice man in a neat blue TSA uniform greeted us and immediately calmed our nerves with patience and reassuring words. The sparkle in his eye matched the stud in his ear as he passed discs of cotton over Calvin’s battery of medicines that I had stuffed into a one-gallon zip-lock bag. “Is your son an epileptic?” he gently asked. “Yes, he has epilepsy,” I replied. As he continued examining Calvin’s paraphernalia he mentioned that he had been hit by a car when he was seventeen and began having seizures. The phenobarbital he was put on, he said dolefully, made him into a teenage zombie for several years. I knew exactly what he meant.
As we approached the gate we saw a handsome highschooler in a wheelchair who was traveling by himself. The four of us boarded the plane first and were seated behind the bulkhead, Calvin and I on one side, Michael and the boy on the other. No sooner than I had buckled him in Calvin started screaming bloody murder, his feet kicking marks onto the side panel, his arms lurching out grabbing fistfuls of my hair and yanking. The origin of this manic behavior is difficult to know. Is over-stimulation, discomfort or excitement? No one knows. My gut tells me it's the drugs and/or preseizure flurry. I decided to feed Calvin his walnut snack early trying in vain to calm his crazies.
Across the aisle Michael and the boy chatted. The boy explained that he had been eight weeks premature, had cerebral palsy, and was born missing half of his brain. He spoke in a slow, deliberate manner, a slight thoughtful pause before everything he said, his words round and full. He told us he had seizures and that he was taking a drug that Calvin had also tried when he was just two.
I stretched an arm across the aisle and gave the boy one of my business cards, the one with a photo of Calvin and me on the front, my mission statement and blog address on the back. We agreed to become friends on Facebook. He told us that he loved to read and write. Michael shared some photos on his ipad but Calvin was a magnet. So as they passed the time talking of swimming, photography and books, the boy craned his neck often to watch our son.
At one point the boy noticed the exasperation on my face having to deal with my screaming child. He asked if it was difficult to raise Calvin. Michael replied with total candor and said yes. He saw me try to quell Calvin’s shrieks. “Poor little guy,” he remarked with the purest of empathy, “he can’t help it.” I wanted to cry.
The jet pulled up to the gate and Calvin walked hand-in-hand with me up the gangway so very well, I thought, he’d be having a seizure soon. As we waited for the boy to be wheeled up by a skycap we saw his mother standing patiently, the boy's sweet features mirrored in her face. We introduced ourselves and talked briefly about our encounter with her son and the epilepsy he shared with Calvin. Just then the boy emerged from the hallway, his long thin arms outstretched like an albatross with a huge smile that said, “Mommmmmm.” At this my dammed tears finally cascaded down my face. I quickly brushed them away with the back of one hand, the other holding Calvin’s as he leaned affectionately against my legs wanting to be picked up.
When we reached security a nice man in a neat blue TSA uniform greeted us and immediately calmed our nerves with patience and reassuring words. The sparkle in his eye matched the stud in his ear as he passed discs of cotton over Calvin’s battery of medicines that I had stuffed into a one-gallon zip-lock bag. “Is your son an epileptic?” he gently asked. “Yes, he has epilepsy,” I replied. As he continued examining Calvin’s paraphernalia he mentioned that he had been hit by a car when he was seventeen and began having seizures. The phenobarbital he was put on, he said dolefully, made him into a teenage zombie for several years. I knew exactly what he meant.
As we approached the gate we saw a handsome highschooler in a wheelchair who was traveling by himself. The four of us boarded the plane first and were seated behind the bulkhead, Calvin and I on one side, Michael and the boy on the other. No sooner than I had buckled him in Calvin started screaming bloody murder, his feet kicking marks onto the side panel, his arms lurching out grabbing fistfuls of my hair and yanking. The origin of this manic behavior is difficult to know. Is over-stimulation, discomfort or excitement? No one knows. My gut tells me it's the drugs and/or preseizure flurry. I decided to feed Calvin his walnut snack early trying in vain to calm his crazies.
Across the aisle Michael and the boy chatted. The boy explained that he had been eight weeks premature, had cerebral palsy, and was born missing half of his brain. He spoke in a slow, deliberate manner, a slight thoughtful pause before everything he said, his words round and full. He told us he had seizures and that he was taking a drug that Calvin had also tried when he was just two.
I stretched an arm across the aisle and gave the boy one of my business cards, the one with a photo of Calvin and me on the front, my mission statement and blog address on the back. We agreed to become friends on Facebook. He told us that he loved to read and write. Michael shared some photos on his ipad but Calvin was a magnet. So as they passed the time talking of swimming, photography and books, the boy craned his neck often to watch our son.
At one point the boy noticed the exasperation on my face having to deal with my screaming child. He asked if it was difficult to raise Calvin. Michael replied with total candor and said yes. He saw me try to quell Calvin’s shrieks. “Poor little guy,” he remarked with the purest of empathy, “he can’t help it.” I wanted to cry.
The jet pulled up to the gate and Calvin walked hand-in-hand with me up the gangway so very well, I thought, he’d be having a seizure soon. As we waited for the boy to be wheeled up by a skycap we saw his mother standing patiently, the boy's sweet features mirrored in her face. We introduced ourselves and talked briefly about our encounter with her son and the epilepsy he shared with Calvin. Just then the boy emerged from the hallway, his long thin arms outstretched like an albatross with a huge smile that said, “Mommmmmm.” At this my dammed tears finally cascaded down my face. I quickly brushed them away with the back of one hand, the other holding Calvin’s as he leaned affectionately against my legs wanting to be picked up.
 |
| photo by Michael Kolster |
3.14.2011
joe egg
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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