when grace goes out the window

Partway through reading my friend Chris Gabbard's recent memoir, A Life Beyond Reason, I came across the word grace, and was emotionally stunned. Chris uses it to describe a commitment he made to raise his son August with as much poise and kindness as he could muster. August, like Calvin, had cerebral palsy and was legally blind, non-verbal and incontinent. Unlike Calvin, his condition was the result of injuries he suffered during a medically negligent and reckless childbirth. Reading the word grace, I felt a deep sense of shame and regret, since too often when caring for Calvin, any semblance of grace I might be able to muster, inevitably goes out the window. And though I can blame any number of reasons for my graceless behavior—sleep deprivation, agitation, resentment, monotony, grief, impatience, anger, frustration—I still feel remorseful of my inability to be wholly graceful when caring for such a pure, affectionate, faultless little kid. 

In the heat and humidity of early evening while strolling alone in the garden yesterday, Michael having gone to Boston for the night, I heard, via the baby monitor slung around my head, Calvin banging the wall behind his bed. I made my way up to his room and was greeted by the stinky news that he had pooped. After unfastening the safety netting and side panel of his bed, I first sniffed his fingers. Yep. He had put his hand down his diaper and into the shit ... again. Exasperated, I grit my teeth. I wiped him up, gave him a new diaper, and spread copious amounts of sanitizer on his hands. All the while, I bitterly and openly lamented the fact that, despite how often this happens and no matter how many ways I try to explain to him why he shouldn't do it, it never seems to sink in. I rubbed his palms and fingers down, cleaning underneath each fingernail with half a dozen baby wipes. I changed his pants and shirt, which were both wet, then put him back into bed. When laying him down, I noticed a brown splotch on his clean sheet and another on the wall above his head. I tried hard to contain my vexation, tried to emulate my friend Chris, and to act with grace. But in my state of cumulative and acute sleep deprivation, plus a certain kind of traumatic stress disorder from fifteen years of rearing a boy with chronic epilepsy who it still a lot like an infant, I lost my head.

"GODDAMMIT!" 

I screamed at the sheet, at the walls, at the bed, at myself, at my son. Luckily, Calvin remained visibly unfazed. No doubt, however, with all the windows open, any passersby or neighbors could have heard my ugly distress. The grace I tried to hold in my body's vessel, in my brain and spirit, went right out the window instead.

I apologized to Calvin and to Nellie. I should apologize to the neighbors just in case. I forgave myself for the eruption which came on the heels of a buildup of worry, frustration, pressure and tension. But when I woke up this morning, I was uniquely aware that I hadn't spent the night clenching my teeth.

off to the side

The boy in the photograph—like his classmates standing on the bleachers—is clean-cut, wearing dark slacks and a white shirt. And if it were not for one thing, I’d be wondering why he is singled out, sequestered far from the rest of the choir. That one thing is his wheelchair. The boy has cerebral palsy, and instead of wheeling him over next to his classmates the teacher leaves him off to the side near the door of the gym. From there the boy watches his friends sing.

In his first year of kindergarten, Calvin was that boy. I’d arrived at the school’s gymnasium just as the kinderconcert was beginning. Calvin’s pint-sized classmates stood in rows atop aluminum bleachers on the stage. I looked eagerly for my boy and his one-on-one aide, but they were nowhere to be found. Then, scanning the crowd, I spotted the two of them seated on the floor. I made my way over. “Why isn’t Calvin up there with his classmates?” I asked curiously, disappointedly. His aide explained that they thought the commotion and singing might overstimulate Calvin, perhaps irritate him. I’d have told them that Calvin probably wouldn’t mind.

The kid in the Huffington Post article has Down syndrome. The airline refused to let him fly first class (though his family had splurged on the tickets) citing that the teen was a “flight risk.” Lies about the boy’s behavior had been told by an airline representative who said that he’d been running around in the gate area, though the video his mother took with her phone showed him sitting quietly playing with his hat.

I was visiting Calvin and his aide at school one day last year, or perhaps it was the year before—time blurring into itself because of Calvin’s slow-as-molasses development. We were all walking down the hallway together. Calvin was in the lead followed closely by his aide, her tight grip on his slack harness allowing him to feel his body in space and to learn to right himself on his own. A girl of nine, or so, approached us. “Is he a dog?” she asked me. I knew the girl was referring to the fact that my son was wearing a harness. “No,” I said, “but are you a pig?” She frowned and sulked away.

When I was in grade school, the disabled kids rode their own bus which deposited them with their wheelchairs and braces and spastic limbs in front a free-standing cinder block building, which was off to the side of the school's cul-de-sac. I rarely saw those kids—my peers—I never remember them being on the playground with the rest of us and none of them became my friend.

I'm going to visit Calvin's mainstream second grade class today to talk to them about epilepsy and answer any questions they might have about Calvin, who can't talk to them himself. They'll be sitting on the floor in a group and, hopefully, Calvin and his fabulous one-on-one, Mary, won't be off to the side.

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Give to cure epilepsy: http://www.calvinscure.com

Calvin with his one-on-one, Mary

friday faves - boy on a plane

This time last year we took a holiday in Florida. After a pleasant week-long visit I remember the tearful goodbyes to Calvin’s grandparents, aunts, uncles and cousins before heading to the airport and being dropped at the 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 it 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 and hugged.

photo by Michael Kolster

soul window

Written by my friend Catherine Taylor

Last night I dreamt that my son Leland hugged me. I put his floppy arms around my neck, hugged him gently and then released. I did it again, never taking his arms from around me, but continuing to alternately hold him lightly and then in a stronger embrace so that he could tell the difference between the two. Finally, I felt him tighten his arms around me, so lightly it would’ve been imperceptible to anyone else, but I was acutely aware of the difference. When I woke, I told my husband about the dream and cried in that way that good dreams can make us cry—as If they’re a portent of what will be some day; that we shouldn’t worry, these things will come to pass, its only a matter of time. In dreams, I’ve seen my son take steps, communicate with us, run.

Leland can’t walk, can’t communicate. He contracted viral encephalitis from a mosquito bite on his twelfth day of life. His brain swelled as much as it could within the confines of his unfused skull plates and fontinel, but it wasn’t enough. He was left with global brain damage, cerebral palsy, Cerebral Visual Impairment (CVI) and refractory epilepsy. Drug after drug eventually fails him, as has the ketogenic diet. Two weeks ago, we had a vagus nerve stimulator inserted into his chest—this device cycles automatically with the goal of short circuiting seizures by sending out an electric impulse to his brain. All hope rests on enough of a decrease in seizure frequency and severity to allow him the chance to develop some skills without the constant interruption of seizures, so that someday, perhaps, my son will hug me back.

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Sweet Leland

completely retarded

We step up to the blue deli counter where Seth greets us with a pencil and small order pad in hand. “I’ll have an Ethanwich for here,” says Michael, as he grabs a Diet Coke from inside the refrigerated case.

We sit at a table against the wall watching customers come and go while waiting for our order. A familiar man reels through the door, his oversized winter coat draped lopsided on slouching shoulders so that one cuff hangs over his knuckles. Waving from across the room I say, “There’s Lloyd.” He sees us and awkwardly makes his way over, shuffling and wobbling in that unmistakable cerebral palsy way. Lloyd stands at the end of our table with a bewildered expression on his face, his eyes set between a pair of wrinkled parentheses like some Peanuts character. I smile up and say, “Hi Lloyd.” He tilts his head and with an open mouth makes a kind of happy growl. I give him a thumbs-up. After a slight pause he does the same with a warped hand that somehow mirrors his contorted body. We do a knuckle bump and he smiles.

I point to Lloyd and spell out his name using sign language. He smiles again and says, “Arrrrgh,” at which I gesture to Michael and spell out his name, too, with fist and fingers, though momentarily forgetting the sign for the “h”.

“You know sign language? When did you learn that?” Michael asks.
“I learned it as a kid, you know, because my uncle is deaf and retarded ... but just the alphabet and a handful of signs,” I explain.

Then I remember how my friend Monica and I used to sign to each other in church just to make it through the long, boring-ass services without slipping into a coma, how sometimes we'd practically pee in our pants trying not to giggle.

Lloyd ogles us as if we’re aliens from outer space, though I know we are familiar to him, then saunters over to another couple seated near the windows. The man greets him warmly though the woman seems less sure. After several minutes of Lloyd’s unrelenting stares they kindly say, “We’re going to eating our lunch now,” hoping he’ll get the hint and shove off. But he remains, fixed. They repeat themselves, perhaps unaware that Lloyd sometimes uses hearing aids and, even so, it’s unclear if he understands what is said to him. After a long awkward moment Lloyd releases his captives and moves on.

Seeing Lloyd reminded me of a scene in the matinee Michael and I had watched the previous day called The Descendants, starring George Clooney.

In the scene Matt King, played by Clooney, is driving while his teenage daughter Alex and her friend Sid sit in the backseat. Sid says something quite perturbing to Matt, who slams on the brakes and leans back to address the couple:
 
MATT (to Alex)
Your friend is completely retarded. You know that, right?
SID
Hey, my little brother’s retarded. Don’t use that word in a derogatory fashion.
MATT
Oh.
SID
Psych!  I don’t have a retarded brother!
ALEXANDRA
You suck, Sid.
SID
Speaking of retarded, I wish they would just hurry up. Sometimes I wait for them to cross the street, and I’m like, come on already! But then I feel bad.

I winced and laughed through the scene, found it amusing, pathetic and sad. I flinched at Clooney’s use of the word retarded. I chuckled when Sid lied about having a retarded brother. I winced again when Sid mentioned that he wished they’d hurry up, even though I understood his perspective, perhaps akin to those who watch and wait as Calvin and I slowly stumble hand-in-hand across streets and parking lots. And finally, I appreciated Sid’s regret at his own sorry feelings.

What a perfect scene, I thought, running the full gamut of emotions because of a single, seemingly innocuous word—retarded. Like Lloyd standing at the nice couple’s table as they first engaged and then waited—perhaps even miserably hoped—for him to hurry up, to disappear. I myself remember times in public, when struggling with a drugged-up manic, shrieking, drooling, hobbling Calvin, I wished that I could simply disappear, and then—like Sid—deeply remorseful for having had those thoughts.

Please share Calvin's story with the world. Help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

other

Everywhere I go I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid I would’ve responded sarcastically, “take a picture, it lasts longer.” But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.

At twilight several weeks ago I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a chicken. I noticed a driver idled in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me and then, when I caught her glimpse, I smiled. She didn’t; just stared back at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.

Then there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hand or harness as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes; hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s watery eyes sometimes, and it makes me love him that much more.

I’ve always felt different from the rest of my own family in most ways. Michael too. You know, the black sheep, the weirdos. I guess I’d say we dance to the beat of a different drum. And we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis; see life through yet another filter, that—if our child were healthy, normal—we might never have known. Each year living with Calvin strips back another layer—like some withered bark or faded, brittle skin—of what we thought we knew but didn’t. Though life is hard it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.

There is a beautiful scene in the film Tree of Life, set in 1950s Texas, where a mother takes her young sons to town. Crossing the street behind her the boys pass a swaggering drunken man who tips his hat to them. The brothers mimic him laughing, cutting zigzags and bumping into each other. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel, dragging one foot nearly on its ankle. They stare but do nothing, noting the peculiar but sad circumstance of his disability and, perchance—in their minds—noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Another, their mother lifts a drink from her thermos to his lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?

Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up living the life of “other”, and at times we’ll be singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other”.

Please share Calvin's story. During this brief campaign please donate to epilepsy research for a cure at: http://www.calvinscure.com

photo by Michael Kolster

poor little kid

I leaf through a thin stack of papers that come home from school with Calvin and toss out the ones about the book sale and the basketball night. A large white envelop with a cellophane window reads A Smile worth Sharing. I fish out a thick page of photographic paper telling me it’s the last chance to order and that pictures this good would be a shame to miss! There on the page is Calvin’s sweet mug staring up at me with that glazed, zombie, drugged-up expression I know all too well. Under a mop of shiny auburn hair, behind thick glasses his eyes droop, nearly at half-mast. He’s what I’ve heard people call a mouth-breather, his lips slack, tongue showing. At first I don’t notice, but when I look closely with my reading glasses, I see a thin, elastic strand of drool trailing in a curve from his bottom lip to his blue fleece shirt. Those damn drugs, I think, he wouldn’t drool if it weren’t for those frigging drugs. My mind compares this photo with the hundreds of bright-eyed snapshots from before the seizures, from before thousands of chalky tablets, crystalline filled capsules and syrupy, syringed liquids we've had to pump into him.

At the town’s cozy public house Michael and I sit at the end of the bar drinking beer and eating the most delicious cheesy fries I’ve ever had, the kind with tons of melted cheddar, a mound of sour cream, bacon crisps and sprinkles of chives. A couple of patrons have brought their little kids, both of whom barely come up past my knees. Even so, these kids are walking and talking and eating and drinking ... all by themselves. Their eyes are bright. They can sit in their chairs without falling out. They engage with their environment, handle a fork, look around the room, smile and laugh at the things their parents say.

Later, I remember what a friend had once written about her children, saying how fun it is to see them grow and learn. And here I sit in tears over Calvin’s nearly stagnant progress these past seven-and-a-half years. Michael puts his arms around me as we watch Calvin play on our bedroom floor with his toy piano, picking it up, mouthing it and dropping it ... over and over and over and over. He remarks on how much better Calvin is doing now, how happy he seems, how few seizures he's having, how he plays by himself a little. And while it's some consolation, it's also a bitter reminder of how bad things once were and how having a seven-year-old who is still in diapers, can't walk without assistance, can't utter a word, can barely do anything by himself, still has seizures and must take ridiculous amounts of drugs is an improvement over the boy he used to be.

We’d taken a trip to our favorite coffee shop in the next town over. It was a brisk morning. Michael unloaded Calvin while I clipped Rudy on the leash, the wind whipping in our faces. We each took one of Calvin’s hands and lead him uphill on the bricked sidewalk, cheering him as we went, sensing he might collapse or stumble with each pigeon-toed step. In the painted crosswalk we passed a mother with her teenage son who must have had cerebral palsy, autism or both, his turned-in feet and slight limp, cocked head, retracted arms and spastic hands all dead giveaways. As we stepped up onto the far curb and entered the joint I began laughing. Little ironic tears set into the corners of my eyes. Michael looked at me curiously, wondering what was so funny.  Halfway under my breath I snorted, “RETARD CROSSING,” and he burst out in a chuckle of his own. “I gotta have a sense of humor about it once in a while,” I said with a pathetic little smile on my face, knowing I'd bristle if I'd heard anyone else say that kind of thing, want to smack them upside the head. Compassionately, Michael replied, “of course we do,” and I knew we were both thinking of the sorry scene trying to get our goofy, drooling, drugged-up, floppy kid just to walk, and saying to ourselves, poor little kid ... poor little kid.

Over halfway through epilepsy awareness month and we need to keep the campaign alive. Please share this story and change a life. Help bring us one step closer to a cure for epilepsy. We do the hard work, you just push a button. 

not nearly enough

As a child I remember my mother telling me, not infrequently, that she and my dad were lucky because—having had so many children—all of us were healthy. If she’d said it only once it might not have stuck with me the way that it did. I knew she was right—that the odds were against us. I knew in part because we were friends with a swimmer family whose son had some sort of kidney condition. I’m not sure if he might have been born with only one, but it appeared—if that was the case—that it didn’t function correctly. He was a boy of small stature with a fantastic sense of humor, a kind, expressive face and a really cool, sort of gravely, voice. Tragically, he died quite young leaving behind a brother, two sisters and his grieving parents.

In that same, close, swimmer circle I had a friend whose beautiful teenage sister died from leukemia, a friend who was born with a progressive congenital visual defect causing her to slowly go blind, and my brother’s teammate had a sister who was born without arms and legs, just little nubs where her limbs should have been. There were children with ADHD who had to take speed to slow them down and a teenager who committed suicide perhaps because of a mental health problem, a drug problem, or both. There was even a man in his thirties, who came to swim at the pool most days, who’d lived with his mother his entire life and whose behavior seemed that of a child’s, perhaps retarded or autistic. There was a boy in our neighborhood with juvenile diabetes and one that went to my high school who had cerebral palsy. He wore thick black-rimmed glasses and I recall seeing him often shuffle down the halls alone, his books clutched to his chest as if fearing he might drop them.

Recently, I thought about what my mother had said while walking Rudy across a blustery field. Hundreds of college athletes suited up in shorts and knee-high socks, shin pads, colored jerseys, helmets and cleats, were tossing and kicking balls or wielding hooked plastic sticks. A muscular, thick-thighed runner sprinted by on a gravely path. Calvin will never do that, I thought. We’ll never enjoy the athlete in him that his perfect body would have promised if not for his deficient brain, his seizures. I’ll never see him bat a ball squarely echoing the satisfying crack that announces a warm spring day. I’ll never know the joy of watching him dart and weave through lanky boy bodies chasing a ball down a grassy field. I’ll never see his lithe body gracefully arch and pike through an imaginary hole, then surface, churning the water beneath him, like an ox pulls turf in a field.

I know very well how fortunate I am to have sweet Calvin in my life—this pure, innocent spirit—to embrace and love and kiss. But often, at times when I think raising Calvin is enough, all too much to bear, I find myself thinking and feeling and crying to myself, it’s not enough ... it’s really not nearly enough.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. 

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.

seizure number one

Six years ago Calvin had his first seizure. He was a year-and-a-half old but appeared more like an infant because of his small size and lack of ability to do most things. Even his distinguished Mickey Mouse glasses didn’t give away his true age. He was just beginning to sit up by himself but couldn’t crawl, though we practiced together on our hands and knees for hours at a time.

The morning of the fateful day Calvin awoke listless and pale, so after breakfast we put him back in his crib and he fell right to sleep. Later, he was lethargic in his johnny-jump-up—slumped—like a dead parachutist instead of performing his usual pirouettes. After his second nap, he felt warm so I took his rectal temperature again. The slender white thermometer beeped reading 102.6. We gave Calvin some acetaminophen in hopes of reducing the heat and, having never known him to have such a high fever, I called our local hospital. It was late on a Sunday afternoon.

The doctor I spoke with was not a pediatrician. I described Calvin’s symptoms as well as his neurological deficits—the ventriculomegaly, the hypothyroidism, the global developmental delay, the cerebral palsy—and asked if there was anything to worry about. “Nope,” he said, “kids can tolerate much higher temps than adults, sometimes as high as 106 degrees.” “Even kids with developmental delay?” I asked. Though his answer was confident, I hung up the phone quite dubiously.

Michael lay next to Calvin on the futon and ushered a little smile from him. I crouched down to join them just as Calvin suddenly cracked like a whip into an arch stiff as a steel rod. His eyes bulged from their sockets, his lips pursed as if drawn up with thread. Michael gathered him up, instinctively—worriedly—rocking him back and forth as if to jostle and coax the seizure out. I white-knuckle-called for an ambulance.

“My son is having a seizure,” I blurted, “he’s one-and-a-half and he’s not breathing—he’s turning blue!” The walls began closing in on me, Michael’s rocking tumbled the room on its side like some circus house of horrors. Sounds morphed and muffled. Everything around me looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp focus. Cradled in his father’s arms, now jerking rhythmically—violently—Calvin’s face became ashen like a dry river stone or a corpse, his eyes rolled back into his head so that only a sliver of his beautiful blue iris shown. The woman on the other end of the line kept me there, confirmed our address, took details. I spat off answers between shallow breaths, my heart pounding in my head. Time stood still as in a dream. I wasn’t sure if Calvin was alive even though his shudders persisted. I couldn’t find a pulse.

My next memory is of the cold hard edges in the ambulance, the sterile sickeningly gray vinyl benches, the long black seat belts, like snakes, with steely buckles for heads. My tiny child lay in the center of a huge flat, sheeted white gurney, his eyes now vacant and still staring up at the bluish-white light in the ceiling. I feared he might remain that way forever because of the seizure. Little did I know then that some kids do.

Please share Calvin’s Story with others. Help bring us one step closer to a cure for epilepsy. PLEASE.

Calvin at 18 months

saturday stroll

Last Saturday was a lazy day, warm and sunny. In the late afternoon when a breeze kicked in I gathered Calvin and Rudy for a walk to the shady college campus nearby.

I scuffed along at a snail’s pace in loose leather flip-flops and a tank top with my cargos rolled up, under a straw hat tied at my chin. I strolled leisurely like one does over steaming hot asphalt on a sultry day in New Orleans. Welcome shade graced us from a grove of white pines, the sun filtering through thick, heavy branches. Calvin sat upright in the jogger and played happily with his bare feet, giggling to himself. He’s still such a baby, I thought fondly, leaning down to smother him with kisses every few yards, to which he squealed with delight.

I had left Calvin's glasses at home so I didn’t have to worry about him ripping them off sideways and pitching them into the brush. Even so, on campus he eyed a bank of creamy hydrangeas and reached out to them. I moved closer so he could grab the powdery globes. “See the pretty white flowers, Calvin? Can you touch them?” It was nice to see him explore the puffs with his hands for a good long time. “Good job, sweetie,” then he tore off a bloom and tried to stick it in his mouth. I remembered back to when he was an infant and reached out to nothing, not even the brightest toys held within his feeble reach, his tiny arms hanging slack like noodles at his sides, his brain not knowing what to do or how.

As we reached the main quad we passed a woman and her son. The little blond boy looked to be about Calvin’s age—seven, perhaps younger—and she was leaning over helping him with his bicycle. We strolled on. Further ahead a young man sat alone on a near hillside abutting some brick dormitories. As we strode on past we smiled at each other and I called back for Rudy to catch up.

At the far end of campus we started to loop back following our original route. Perched on the same grassy slope where the man had been was the woman I had seen earlier with her boy. I realized that they were a family. She was crouching on her feet, perched like a gargoyle, arms wrapped around her knees, her hands tightly holding her elbows looking out into the quad. Severe bangs shadowed her narrow dark eyes and when she looked at me—at us—I flashed a genuine smile. The smile was returned with a hard stare. My mind raced wondering what she was thinking. Was my casual look so distasteful? Might she have been repulsed by my skinny knobby-kneed barefoot pigeon-toed boy poking both of his eyes and spouting strange guttural, albeit happy, sounds? Perhaps she was completely unaware of our crossing before her, caught in some sort of furrowed-brow vexed trance. I couldn’t be sure.

When I looked away from her the boy and his dad were rounding the near corner of a paved path. The man was awkwardly holding the handlebars supporting the bike, reaching one arm across his son’s chest to grasp the far handle. The boy, with his mother’s same stormy eyes, looked serious, weary, maybe even frightened as his father, now stoic, pushed him along. No words of encouragement were spoken, in fact no words were uttered at all as they rolled past the mother to complete one more lap. None of them seemed to be having any fun.

I continued on and when we reached the intersection near our home Calvin, as he always does, became animated. Since he was an infant he has somehow recognized that exact section of street, even without his glasses, knowing he is close to home. “We’re almost home,” I say to him. “Are you excited, sweetie?” and I lean down to kiss him knowing full well that he is.

photo by Michael Kolster

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.

photo by Michael Kolster

malady of millions

About one in one hundred Americans has epilepsy—three million of us. Each of these individuals likely has parents, siblings, offspring, a companion—or all of the above—who are intimately impacted by the disorder. It also means that each of us—whether we are aware of it or not—probably knows a handful of people who suffer epilepsy’s hardship, either directly or indirectly. That’s tens of millions of Americans who are touched by this misunderstood, marginalized, grossly underfunded malady.

Epilepsy afflicts more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Each year more people die from from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning, than breast cancer—many of them children—yet epilepsy remains an obscure disorder.

If you or someone you know doesn’t have epilepsy, there’s no guarantee of immunity. Epilepsy can strike anyone at any time, without warning. Seizures can attack fetuses, infants, toddlers, tykes, teens, young adults, adults and seniors. Often the cause is unknown, but it can be the result of genetics, lack of oxygen, head injury or stroke and can coexist with Autism, Cerebral Palsy, Down syndrome and Alzheimer’s amongst others.

If you or someone you know does have epilepsy, there is nearly a 40% chance that the seizures are not controlled by medication. And if they are controlled with medication there are egregious side affects to cope with on a daily basis such as dizziness, headache, gait disturbances, cognitive slowing, lack of coordination, nausea, loss of appetite, blurred vision, double vision, lethargy, drowsiness, suicidal ideation, depression, anxiety, hyperactivity, aggression, kidney failure, liver failure, lethal skin rash and—paradoxically—increased seizures, to name only a few.

Please, please share Calvin’s Story with others. Help bring us one step closer to a cure for epilepsy by championing awareness. It’s not hard. Just do it one story at a time.

octopus

Lately the kid, at mealtimes, is non-stop frigging spastic energy. His behavior improved fro a little while but since increasing one of his antiepileptic medications it has worsened again. He flails his arms like an octopus on speed and kicks his feet into me with reckless abandon. He can’t manage a spoon when he is like this, and he’s not very good with one to begin with. The yogurt goes everywhere but in his mouth—in his hair, on his chin, his bib, his hands, the rug. When he kicks me, though it’s not malicious, he sometimes pins the skin of my inner thigh between his nubby shoe and my chair. Once, I leaned in to feed him a spoonful of cheesy egg and he inadvertently poked me in the eye with his thrashing, rigid fingers.

After a sleepless night is when this behavior is hardest to deal with. I get frazzled and frustrated and feel like screaming above his own screams. At times I do, which only causes Rudy, our ten-year old chocolate lab, to grow grayer than he already is. It escalates my own anger but, thankfully, just makes Calvin laugh. At times I feel like punching a wall. I never do. But I’ve had to remove myself from the situation and go whack my pillow. Once I pummeled repeatedly so hard that I injured my elbow and it ached for days.

I used to say that Calvin wasn’t manipulative, but when sitting in his high chair, when he wants my attention and isn’t getting it, he’ll scrape his teeth into the wooden tray gouging troughs and dislodging splinters that he inevitably must be swallowing. There’s a large divot in the tray to prove it. Somehow I’ve got to find a way to curb that behavior, among others. A fleece blanket covering the tray is my current solution, though our little Houdini has begun to figure out how to get around that trick.

But this crazy kid of ours, this goofball piece of work, is so damn cute I don’t know what to do with myself sometimes but just swoon. Lately, I’ve even begun feeling fulfilled knowing that he will be our only child, our one and only two-armed, two-legged octopus.

bad things sometimes happen

 Last Friday I boarded a plane headed to San Diego to visit my eighty-one year old mom. She lives there with my brother Matt and his wife. My sister Caron lives about five minutes away with her husband.

When I go on trips like these, which is not often, I sometimes look forward to the journey, to just sit back, relax and think about nothing, do nothing. But that never happens. Instead, I end up with too much room in my head—lag space—and my thoughts seem to always gravitate toward Calvin and what the hell went so wrong. It’s what happened in the Washington Dulles airport as I sat in adjoining vinyl chairs propped up before a huge plate glass window staring out at the painted lines on the tarmac, sitting between strangers. I didn’t care if they saw me cry.

I always ask myself if I swam too hard when I was pregnant. Was that what happened? If only I could roll back time I’d do it differently. He’d have been such an amazingly extraordinary ordinary kid. If only I could see him now, without the mess of a brain—without the seizures—walking, talking, practicing multiplication tables, splashing in the spring’s rain puddles with me.

And then, as a coping mechanism, I remember the email my sister’s friend sent me, the OBGYN who we met in Boston after the shit had hit the fan, who wrote, “Unequivocally—YOU DID NOTHING TO CAUSE THIS PROBLEM. Unfortunately bad things sometimes happen.”

She got that right.

photo by Michael Kolster

school days

When I was a kid my parents never allowed us to cuss or say “shut up” or “hate” or “spastic” or “retard”. Even as a youngster these rules seemed like good ones, though one of my brothers relished using them on me anyway. Not to worry. I could take it.

Up until third grade my mom drove me and my brother to school in our squeaky 1960s sky blue and white Chevy Impala Bel Air. She’d drop us at the curb and I’d run to class, my salt and pepper plaid pleated skirt, white blouse and carmine wool sweater vanishing into a sea of scampering clones. Matching boys and girls were greeted by nuns, some with thin silvering hair pulled back tightly into buns accentuating sharp noses, their manner and facade equally austere.

In fourth grade I started attending public school, freeing my mom of her early morning drive. At the top of our gravel road I’d wait under the cover of a small shack until boarding a yellow bus elbow to elbow with my best friend Monica. We’d bounce happily in our seats, steaming up windows chit-chatting away. When the bus pulled into the Robinswood Elementary School parking lot, twenty rowdy kids tumbled out onto the pavement and scattered like so many leaves.

On the far side of the parking lot sat a lone one-story building boasting the same cinder block design as the main school. But inside it was different. Inside dwelled the Special Ed kids. We really never saw them up close, just got fleeting glimpses from afar. The kids were in wheelchairs and walkers, limping, drooling, yawning, recoiling. The mean students called them retards, spazzes. None of them were my friend, I didn’t know their names or recognize their faces. They were nobodies to me, sequestered to a special building, a special short bus, a special life hidden and unknown to me. My memories of those students are so vague, having had little to no exposure to them. Sometimes I wonder if they really existed.

Now days it’s different—disabled children, Autistic Children, children with cerebral palsy often mainstreamed with the “typical” kids, the “normal” kids, the ordinary kids. Calvin participates in a class like this for part of his school day. The other kindergartners love to be near him, to read to him, to somehow befriend him.

One day I brought Calvin to school after a doctor’s appointment. He was in my arms as I was saying goodbye and a string of his fellow kindergartners marched on past. When they saw Calvin each of them waved and, like a gaggle of geese, chirped “hiiiii Caaaaaaalvin!” My nostrils stung and I started to cry. My boy finally had some friends, some other kids who truly showed an interest and fondness for him. I'm glad he's not shunned or hidden or shamed like in the days when I was a kid growing up, back when my brother called me a retard.

drooling

Drooling is something Calvin has pretty much always done. His physical therapists have thought that it is the result of Calvin’s low muscle tone. It made sense to me, having seen children and adults with cerebral palsy troubled by incessantly glistening lips—shining saliva strands stretched from chin to collar.

When Calvin was a baby he wore bibs all day long to protect his clothing from getting soaked. Sometimes, though, that wasn't a sufficient barrier to the constant wetness which causes a mild prickly rash to form on his chest. In preschool, we began tying cotton bandannas around his neck. Folded diagonally, I sewed thick batting into the middle of each bandanna like a cotton sandwich, then stitched in his name. The colorful western kerchief became Calvin’s signature. He goes through about five to ten each day, our chairs, tables and freezer draped with limp, bright cloth triangles like the drooping clocks in a Dali painting.

About a year and a half ago we weaned Calvin off of one of his seizure medicines, Clonazepam, a relative of Valium. He stopped drooling. You’d think I’d won the lottery. What an incredibly liberating feeling just to put his shirt over his head and be done with it. No bandanna. And to see my sweet boy’s cute little neck peeking above his collar ... well, I can’t really describe the feeling except to say that it was pure motherly bliss.

It’s amazing what one tiny, seemingly insignificant event or discovery can do to lift my spirits amongst so much anguish, drudgery, angst, fatigue and despair. But when these small gifts are bestowed upon me, I don’t take them for granted. In life, nothing is guaranteed.

We replaced Calvin’s Clonazepam with its cousin Clobazam, and the drooling returned. I tell myself there are worse things. And there are.

photo by Michael Kolster

victory's tears

Calvin’s class goes swimming every Thursday at the college pool two blocks from our home. Last Thursday I walked there with Rudy the dog to watch Calvin frolic in the water a bit. Rudy waited for me outside, tied up to a post. The pool was empty, a sheet of aqua glass, but scores of onlookers, some half-naked participants, others t-shirt and flip-flop clad volunteers, lined its deck. A young girl was singing the National Anthem in a clear cool voice. Then she passed the microphone to another girl who carefully spoke the words, "Let me win, but if I cannot win, let me be brave in the attempt." The girls had something in common. They were both disabled. They had just commenced the community's Special Olympics.

Having just stepped into this surreal scene—and though mostly white—thick with the diversity of humanity, a rush of emotion flooded over me. In an effort to conceal my weeping I hugged the sweating tile wall. Two of Calvin’s barefoot classmates, Olivia and George, both eight and silent, pigeon-toed past in their suits, clinging to aids who helped them don belted Styrofoam floats. Calvin, too young to participate, had stayed behind at school.

A few lanes over, two swimmers windmilled neck and neck on their backs for a hundred yards. Cheers and applause filled the stadium as they splashed home, their beet red faces sporting huge grins.

Up next, a solitary boy got on his mark and slapped into the water at the sharp blow of a whistle. With arching arms he dug his way across the pool in a slow motion butterfly sprint, hit the end, sprung out and proudly traipsed by me, dripping wet. I gave him a big thumbs up at which his toothy smile spread ear to ear.

With each victory my heart swelled. From my screwed up face more tears splashed onto the wet floor. I was overwhelmed, though lost without a name for what I was feeling. I wondered, too, how many of these athletes, besides George, suffered epilepsy. No doubt more than just a few amongst so many with Down Syndrome, Autism and cerebral palsy.

Again the starter blew her whistle. Olivia and George, bobbing nearly vertical with the help of their aids, paddled and kicked and wriggled their way at a snail’s pace to the finish line, oblivious to the events but happy and engaged. The crowd cheered as they reached their goal.

I thirsted for more but Rudy was outside waiting. As he and I slowly skirted the facility, alone with the sun on our faces, I broke down, the cascade of emotion nearly bringing me to my knees. Joy blended and morphed into sorrow and grief and back again. Fatigued, my vision spun me in circles, blurred by a curtain of tears. What a world Calvin has brought me into. Strange. Special. Heart-wrenching. On the ground snow and ice finally melting as tender blades of grass sparkled like emeralds in the sun.

photo by Michael Kolster

more than enough

Today I called the Disability Rights Center to drum up some help encouraging Calvin’s secondary health insurance to approve an adaptive bed. The kind woman on the telephone needed to take down some information about our appeal. I gave her the usual particulars—my name, phone, address, Calvin’s name and age. Then she asked me, “what is his disability?” I told her he had several and continued with the list, “ventriculomegaly, cerebral palsy, global hypotonia, pervasive developmental disorder, intractable epilepsy—“, “that’s enough,” she said, before I had a chance to tell her about his slow gastric emptying, hypothyroidism and visual impairments. I chuckled to myself and replied, “you're right, it’s more than enough.”

philip

The following story was written by one of my husband’s former Bowdoin College students who has worked with elementary school kids teaching ecology and a love for the outdoors by taking students to the forest, tide pools, salt marshes and beaches:

One of my favorite stories involves a ten-year-old boy, Philip, who was fairly wheelchair-bound because of cerebral palsy.  Philip could use a walker, but after about five to ten minutes he would be tired and have to switch to his wheelchair. A lot of the trails we went on weren't exactly friendly for walkers or wheelchairs, so I spent a lot of time holding on to Philip's hands acting as a human walker as we went up and down stairs, over roots, across streams, and through mud while someone else carried his wheelchair.  He couldn't communicate very well, but I was amazed by his curiosity, trust, and sense of humor. 

On our last evening, I did a night hike, taking my students out into the forest without any flashlights or headlamps.  Our group walked an old gravel road that curled up the side of a hill.  I had a couple of high school students helping me out, so one pushed the wheelchair while the other carried the walker.  Philip's teacher was there to help, too. Their hard work paid off toward the end of the night hike when it came time for the lone walk. Each student walked by themselves, one at a time, from the cabin leader to the naturalist (me), 50-200 yards down the trail.  The lone walk is required of most students, but we weren't so sure about Philip.  We talked to him for a while, and he assured us, in his own way, that he wanted to try. 

Philip was the third or fourth student to do his lone walk.  The cabin leaders helped him out of his wheelchair and got him set up with his walker.  He shuffled forward about five steps, then looked back and scooted backwards a few steps.  Then he started up again.  This time he was more confident and didn't look back . . . I could hear his walker wheels scattering gravel as he raced toward me.  Philip was cruising with a big smile on his face.  Luckily it was dark, so none of the students could see my tears.

I think about that moment a lot.  I wonder if it meant as much to Philip as it did to me. The hours I spent with him that week made me a better person and reinvigorated me as a teacher.

Written by Aspen Gavenus