9.30.2011

hazy moon full moon

Last night was pizza and beer night with our good buddy Charlie. We bathed in the aroma of sauteed mushrooms and garlic. I rolled the dough into a misshapen disc and laid it on a cornmeal-coated pizza peel. We were eager to assemble it and toss it into the piping hot oven. After a tense couple of seizure-angst days, I had ripened to a point where I just wanted to curl up in front of the fire with a glass of wine.

Suddenly, from across the kitchen I heard a terrible retching sound. It broadcast from the baby monitor slung around Michael’s head. I bolted upstairs to Calvin’s bedside and peered through the netted canopy. Alas, the monster seizure had arrived. Calvin’s face was buried into his down comforter, one arm awkwardly twisted and pinned underneath him. I quickly unlatched the bed’s safety panel to flip him on his side. His rigid arched body queerly pivoted on its heels. His pale gray face appeared like a hazy moon in the darkness as his body seized in spastic convulsions. The blood-curdling sound I had heard was his constricted breathing, as if Calvin were drowning. I know this sickening sound all too well. Folding back his white duvet, in the center where his face had been smashed, I noticed a large, miserable saliva-plastered spot revealing a blemish of matted light and dark feathers visible through the sopping fabric.

After it was over we stayed with Calvin a spell, our friend downstairs waiting patiently as he had done on several occasions in the past. We lifted Calvin’s body some, tried repositioning him on his side again but his body wouldn’t oblige, kept righting itself face-up like a buoy. We kissed him, told him that we loved him, then quietly shut the door behind us.

My spirit felt as if it had struck a brick wall, got hit by a Mack truck, clobbered, pummeled, verily snuffed out. These seizures—relentless, suffocating, deadening.

“Should I be going?” Charlie asked. “Would it be better?” “That’s very thoughtful, but no,” I replied, and in the best way I could I described that, though every seizure is as terrible as the last, and that I never really get used to them, at least I know—kind of—what to expect. Then Michael shared his relative certainty that we wouldn’t end up in the emergency room like so often occurred in the past.

As I half-heartedly spread thick red sauce on the round of dough then sprinkled the cheese, mushrooms and olives I started to cry. Charlie stepped forward and gave me one of those big bear hugs I love so much that practically squeezes the life out of me. Feeling so empty, those hugs always fill me back up, at least a little. From behind, Michael grabbed my elbow and pulled me in for another. Hearing his strong heartbeat soothed and calmed my nerves. What a great couple-a hunks, I thought. Rudy looked up at me from his favorite spot on the kitchen rug thwacking his tail happily on the floor. I imagined my sweet boy, upstairs in bed, as I looped the monitor around my head. Through the hissing white I could hear Calvin’s steady, sound, perfect, precious little breaths, envisioning his sweet shoulders rising and falling, his face glowing and peaceful, like the full moon, same as the first time I ever laid eyes on him.

9.29.2011

first words

There must be something about sushi that makes conversation flow like sake. Perhaps it’s the way the raw pink fish melts in our mouths like butter, or the way the crunchy seaweed salad with toasted sesame oil lingers on our tongues. Maybe it’s the exquisite, lemony, lavender martini that our bodacious hostess pours into frosty glasses with a citrus wedge. In any case, the conversation with my girlfriend—our first over dinner together—glided smooth like the sweet and savories down our throats.

We snuggled up to the bar and gabbed about work, the recent elementary school epidemic and a tad bit about my former life as an apparel designer. We blabbed about old boyfriends and how she met her husband—you know—the stuff you talk about when you are just getting to know someone in the real sense. The single man sitting next to us offered slices of his seared toro with ponzu sauce, emphatically nudging his square white plate our direction. We happily accepted the delicious ruby morsels using wooden chopsticks, then got right back to our conversation.

“So, how are your boys? What are they up to lately?” I asked. Speaking of her littlest she replied, “he said Mommy,” as her eyes moistened and hazed. Her unbridled joy was tangible and seeing it—feeling it—gave me little bare-armed goosebumps that I smoothed down with my palms. “That’s so great!” and went on to say, “Calvin said ‘Mama’ once when he was about eighteen months old—clear as a bell—then never said it again.” She looked at me solemnly having long since been apprised of Calvin’s neurological deficits explaining his wordlessness. “Now he just says, ‘Uh-uh’, which I am pretty sure means ‘mama,’” I added. She smiled with me.

I went on to tell her how glad I was to see her glee at hearing her son first utter the word, and that I didn’t realize other moms got all misty-eyed about that sort of thing—that her reaction validated my own feelings of longing to hear it from Calvin. Half smiling, she stoically told me of her toddler’s speech delay and that, though he had said “Mommy” several times on Saturday, he hadn’t said it since. Somehow, perhaps because of my immersion in Calvin's global developmental delay, it hadn't occurred to me that her boy probably should've been saying a few words by now.

My heart dropped like a rock into my lap. But somehow I felt confident that he’d be saying it again and again and again, given time. I assured her as much—after all, and for all I know—her son is normal. And I'm an eternal optimist.

Our conversation ensued, went on to other things. We were quite amused by our lovely hostess’ humorous stories describing her twenty-four year old decadence. But all the while my mind kept creeping back to my friend’s little boy—so cute, so soft and pudgy with such a sweet face and impish smile, at times with a look wise as a sage. All I could think was, I hope he says “Mommy” again. I hope. I hope.

photo by Michael Kolster

9.28.2011

epilepsy is

Epilepsy is heinous, relentless, often progressive and debilitating, harmful, frightening, pervasive, stigmatized, dangerous, tormenting, misunderstood, indiscriminate, on the rise, heartbreaking, costly, stressful, grossly underfunded, loathsome and—for the vast majority of its victims—incurable.

Please share Calvin's Story with others to promote epilepsy awareness. Help bring us one step closer to a cure for epilepsy. Just do it one story at a time. It's as easy as pushing a button.

The video below may be difficult for some to watch, though paramount to understanding what victims of epilepsy—and their families—suffer, and with no cure in sight. You can help change that. Choose to now.


9.27.2011

the "me" bag

I am sitting here in front of my desk (coffee table) with a large brown paper bag folded flat on top of it. Stapled to the corner is a note from Calvin’s first grade teacher. The bag is a “ME” bag. Instructions are to help your child get creative and fill their bag with things that show off how special they are. We are meant to decorate it together and fill it with items to help the students learn more about each other.

I’ll be decorating and filling Calvin’s “ME” bag alone.

If Calvin could, he’d be helping me cut stars out of metallic tissue paper and foil using small plastic-handled, rounded scissors. Perhaps we’d be going to the craft store together, shuffling down the aisles giddily choosing iridescent papers, shiny ribbons, neon sparkles or feathers. The “ME” bag would really be his ... not mine.

If Calvin could he would pick out a handful of his favorite things to share with his class. No doubt he’d choose his orange and blue plastic football that Nick gave him to play with in the bath. He might even toss in his worn copy of Barnyard Dance, the one whose chewed-up edges are starting to look like plaster of Paris, a few pages stuck together having been slimed. I bet he’d try to fit in his little yellow piano with its four colorful keys, even though he bites it rather than plunking out a tune.

Come to think of it, though, if Calvin could do any of these things, he’d likely be choosing other items to fill the bag, like maybe a copy of Mike Mulligan and His Steam Shovel—his dad’s favorite childhood book. Perhaps he’d include a photo of the three of us on our bicycles. I imagine he’d stuff something in there like a kite, a balsa wood airplane or a Wiffle ball. He might even include a pack of bubble gum or a hula hoop which, of course, wouldn’t fit, so he'd fasten the bag to it.

But Calvin seems to have no clue, seems totally oblivious to the joys of art, beauty, creation, imagination. He can't even put a crayon to paper. At times—such as these—this weighs heavily on my heart. No, I don’t take my kid to the museum to sop up cultural experiences. No, I don’t—can't—take my kid to see Pixar movies. No, my kid doesn’t ride his hand-decorated bike in parades, make sandcastles at the beach or sing in school pageants. He doesn't read me stories he’s written, draw pictures for me or show me his neat penmanship on wide-space lined paper.

I so desperately crave these things for my child—for me. My heart is bursting wishful tears. If only I could teach him and show him and share with him the things I dreamed for so long that I'd be doing with my child. If it didn’t all go so wrong (what the hell went wrong?) he’d be such an extraordinary, ordinary kid. That would be so incredibly amazing, I think.

As it is, my boy is—simply put—extraordinary and brimming with the one thing that matters most—love. And so for Calvin, I’ll be making a kick ass “ME” bag for him to bring to school and show his classmates, just to prove it once and for all.

Calvin and his "me" bag

9.26.2011

diving bell and butterfly

The film scene is stunning—taken from the perspective of the eye itself looking outward—a blood orange light radiating through what seems like a translucent leaf, the fractals of its veins branching off into smaller and smaller ones fine as spider silk. At least that’s how I remember it. Dark, oily eyelashes form spikes through which blinding lights flash. A diminishing aperture carefully sutured closed until its owner is imprisoned in darkness. The film—adapted from a memoir—is The Diving Bell and The Butterfly. The man is Jean-Dominique Bauby.

As the story unfolds we learn that journalist, author and editor of the French magazine ELLE, Jean-Dominique Bauby, survives a massive stroke thrusting him into a coma for weeks—his arms, legs and mouth paralyzed. He also loses the use of his right eye requiring that it be sutured shut. The man suffers “locked-in syndrome,” a bright mind incarcerated in a motionless body, able to communicate only by the blink of an eye. Nonetheless, with the help of an emissary who takes his dictation, he writes his memoir one letter—one blink—at a time.

Often, if not daily, I wonder if Calvin suffers his own sort of locked-in syndrome, knowing what he wants but held captive by his wordlessness, his inability to express his desires. But he shows no stressors of this imprisonment—no irritability or frustration—only the stubborn refusal to do something, such as walk down the sidewalk holding my hand, or an insistence for another, like repeatedly leading me to the bathroom and plopping himself on the rug when it’s not quite bath time.

I imagine Jean-Dominique encased in his thick, heavy, claustrophobic diving bell. In his memoir he writes:

My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court.

You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.


If only I knew that Calvin can do the same somehow—escape from his diving bell—I'd be released, if only a little, from my despair over his incapacity.

The author goes on to write about his beloved, aging father:

Every now and then he calls, and I listen to his affectionate voice, which quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply.

I’m reminded of the times in the past five years that I’ve traveled away from Calvin, to visit my mother whose progressive Alzheimer’s has become like her own diving bell, and I recall visiting friends in New York, Los Angeles and Seattle. I call home, talk to Michael, or the nurse, and then they put the phone to Calvin’s ear. “Hi Calvin ... hi Sweetie ... it’s Mama. I miss you baby. I miss you sooooo much.” I know he’s either pushing the phone away, trying to bite it or—in the rarest of cases—smiling. My attempt at connecting with my son—now seven—feels futile. He seems utterly submerged in a metal bell surrounded by murky waters, shifting light and muffled sounds.

However, as I write this I realize that perhaps it’s not Calvin who is imprisoned in this dark chamber, rather I am, which brings me both relief and sadness: relief that Calvin seems oblivious to the world he is missing so much of and sadness because we are both missing the same.

So, instead, I must close my eyes and imagine taking flight from this diving bell—this cocoon—that, in some ways, perhaps I have made for myself. I must remind myself that, like Jean- Dominique Bauby, I can always float in my dreams.

from the movie The Diving Bell and the Butterfly

9.25.2011

remembering martin

Some of my fondest memories of youth are of summers hanging out at our community swimming pool that sat on a hillside of its namesake, Phantom Lake. A large pond, really, the lake was fabled for its murky depths that remained a mystery—that in fact, a small plane that had crashed into it had never been fished out, it sunk so deep. I camped poolside practically every summer day. Between dips in the water I’d lay on the hot cement deck, eyes closed, listening to the drone of small planes pass overhead on their way to the small nearby airfield.

I remember morning practices, steam rising off of the water, thick like fog on some days, the fresh air chilling our limbs. We were packed into lanes like sardines, swimming circles, counting laps, watching the big timing clock’s red second hand for take-offs and finishes thinking it was watching us. We must have looked like a piranha feeding frenzy, scores of gangly churning arms and wild feet kicking up foam. Goggleless, we’d exit the pool rubbing little fists into our painful red stinging eyes, later tipping our heads back to drip cold, soothing milk into them tasting it through our sinuses.

In the next lane over swam a few skinny boys a year or two younger—perhaps nine or ten—named Andy, Rick and Martin. Andy, the feisty one, was short, dark-haired, tan and wiry. He had a smile that practically took up his entire face, cute dimples near his eyes. Rick was taller and fairer with straight, thick hair the color and texture of straw, a consequence of chlorine and sun. I’d rarely see them without towels slung around the backs of their necks, like some friend’s lazy arm. They both had fantastic, witty senses of humor. I hung out with those two a lot one summer, riding bikes and picking blackberries.

Then there was Martin. He was the tallest boy, a beautiful blond Swede with wavy locks, like butter and sugar, and broad muscular shoulders. He walked—almost swaggered—with feet pointed slightly outward in a wide, heavy stride. I can still hear his heels thumping hard on the pool deck. His arms were extraordinarily long and lean. Martin was kind. Martin was funny. Martin was also fast.

The thing I liked about my friend Martin was his passion. He never did anything halfway. He was hotheaded, like some say about Italians or Irish. If he didn’t beat his time, even if he won the race (though I can’t think of a time that he lost) he’d rip off his cap and goggles and throw them in disgust, all red in the face. He was hard on himself and it showed. But Martin’s passion and drive made him a great success. He became the fastest swimmer on all three of the teams we competed on together: summer league, high school and AAU swimming. I watched him grow—always in the lane next to me day after day, year after year—into quite a handsome, charming man. He liked calling me by my nickname at the time, Boss. We endearingly called him The Swede.

In his teens Martin became pals—bosom buddies—with an older boy named Brad. The two of them wore ten-gallon hats and cowboy boots with their Speedos. It was an awesome look. I think they wore aviators, too. I can see them now, strutting down the pool deck, the broad brim of their hats shading smiling faces, Brad’s arm sometimes briefly thrown over Martin’s shoulder like a brother. Their fondness for each other was palpable—sweet.

After high school Martin joined the Marines Corps and became a 1st lieutenant and a pilot. Although I hadn’t kept in contact with him I heard that he had continued to excel in swimming for the academy, and was a great leader.

Then one day (a few years had passed since I had been in touch with Martin) I got a call from a friend. She told me that Martin had come home to celebrate his twenty-fourth birthday—September 25th—with his mom and dad. His father, also a pilot, had built a single engine airplane that he'd been flying. The two of them went up for a birthday ride. I was told that upon taking off from the local airfield they had buzzed Martin’s mom at home, as was their custom—as if to say so long, we'll be back—flew low above the house, which sat on a hillside not far from Phantom lake, but they never came back.

I attended the double funeral. Sorrowfully scanning the gatherers seated in pews I wondered what others were thinking, feeling. Martin's swim coaches were there, some with tears in their eyes. I looked across at my girlfriend who had suddenly and tragically lost her own father when she was just fifteen or sixteen, and pondered her grief, no doubt in my mind these deaths like salt in her wound. Somber faces fixed on two caskets, one draped with an American flag. I seem to remember standing in a long line of mourners giving condolences to Martin's beautiful mother who I always admired for her spirit, assertiveness and individuality. Somehow now I'm not sure if it really happened or if I am imagining it, but in my mind, when it came my turn we embraced. This tall Swedish woman I had always known as a pillar of strength, was listless, vacant, in shock. My heart sunk like a rock into water. The only thing I could say to her was that I was so very sorry and that I loved her son, my fond friend for so many years.

Even today, I cannot hear small aircraft buzzing in the sky above me without imagining Martin and his dad, his mom and his sister. I think about them and mourn their loss. I wonder what Martin might have become. A four-star general? A senator? A father? My thoughts always turn, then, to Calvin. I ponder his future. Will he be with me for years to come? Will he live to be an adult? Will he ever be able to talk or to walk by himself? Will his seizures ever abate? My questions are left unanswered, all uncertain as anything, as uncertain as tomorrow.

The only thing I can rely on is today—this moment. So like Martin, who inevitably inspired his friends, his loved ones and probably even strangers with his zest for life, I aim to live life with unleashed passion and drive, flying high as I possibly can.

I miss you, Martin.

Carl Martin Svensson, September 25th, 1964 - September 24th, 1988

9.24.2011

joy and sorrow

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, Sorrow is the greater.” But I say unto you, they are inseparable. Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.

—Kahlil Gibran
photo by Michael Kolster

9.23.2011

to breathe

A short while after Calvin was diagnosed with epilepsy, when he was two, Michael and I escaped up the road a bit to have dinner with some friends. I remember the drive along a snaking route that hugged the river, worrying about Calvin who we’d rarely left behind and, though he was in the care of a nurse, I found myself tensely holding my breath.

The trip seemed forever, hard to get my mind off of our son, but we finally pulled into the gravely drive and climbed the stairs to greet our hosts. Inside, our friends cupped glasses of wine and champagne and before too long I had my own. Michael and I huddled up to the island on tall stools hovering over appetizers fit for a king. My friend Uli had fashioned hand-rolled tuna maki with sticky rice and spicy mayo wrapped up in dark wrinkled seaweed sheets. I felt the warm alcohol buzz melt over me, felt my legs get deliciously heavy and relaxed. I took a deep, refreshing breath and exhaled.

My lovely host and her husband, who we were enjoying getting to know, were pregnant with their first child. They kindly asked about Calvin so we filled them in a little about his challenges and his seizures but tried to keep the conversation short not wanting to incite fear into the minds of soon-to-be parents. She told me about a collection of essays she was reading, essays about mothering against the odds. In the book, she went on to say, was a piece by a mother of a disabled child that she thought was very good and that I might be interested in reading. Immediately, my guard went up, the brick wall of cynicism I’d formed like a shell around my delicate innards. She can’t know what I think or feel about my disabled child, I thought, she isn’t even a mother yet, much less one of a kid missing part of his brain. I feigned interest, didn’t take the book. “I’ll copy it for you and send it,” she said. “Thank you, that’s very kind,” I offered, sure that I had no interest in what the author might have to say but appreciative of my friend's kind—though, in my mind, naive—gesture.

We gathered around the dinner table for homemade pad thai with peanut sauce and huge succulent pink shrimp. Wine poured freely as the five of us laughed until our faces ached. Although we were sad to leave our happy hosts, and reluctant to step out into the frigid fall air, we were happy to be heading home to Calvin.

A few days later a large amber envelope arrived. I untaped its mouth, pried open the butterfly closure and fished out the stapled copy of the essay. “’Exceptional’ Mothering in a ‘Normal’ World” by Miriam Greenspan. I sat myself down on the couch and started reading. Throughout the essay my thoughts drifted to the friend who had sent it to me, to her angelic face and shining golden curls. Thinking about her made me cry, finally understanding her capacity for compassion, and for recognizing that the essay might resonate for me. Indeed it did.

The child in its pages was a lot like Calvin, the grief and hardship of her family a lot like ours. At once, reading the author's words, I realized I wasn't alone in the world—this bitter cold world—of seizures, ambulances, hospitals, sleepless nights, therapies, drugs, needles, x-rays, body braces, pneumonia, gawkers, fear, despair, stress, grief, loss, marginalization, disappointment, worry, uncertainty, heartache. Finally, I felt I could softly lay down my head—as if on my friend's shoulder—and finally begin to breathe.

detail, photo by Michael Kolster

9.22.2011

heroes

The hero is commonly the simplest and obscurest of men.

—Henry David Thoreau

(I'd add women into the mix.)


9.21.2011

on the rise

I started expecting another seizure two days ago, and when I do they usually arrive—most unwelcome—within that length of time. Today, day eight, it arrived.

Michael and I brought Calvin to specialist number umpteen this morning to try and get a handle on these relentless seizures. We’ve maxed out one of Calvin’s two anticonvulsant drugs and the other one hasn’t proved any more effective as we’ve increased its dose, in fact he’s having them more often since we have.

There’s a list of usual harbingers of an impending seizure—for Calvin, that is. He laughs hysterically—practically collapsing—sometimes at nothing at all. I figure he must be having some sort of aura where sights, sounds and/or smells seem funny. His gait is steady and controlled, his balance incredible. I find myself saying, “Calvin is walking the best of his life today!” followed by, “so I guess we got it coming.”

When we got home from the functional medicine clinic—a nutritionally based treatment form—Calvin and I strolled around the yard a bit, holding hands while he touched his favorite trees and rhododendrons, patted the weathered wooden chairs and tried to bite the iron garden bench. We kissed Michael goodbye on his way to take photos of the river. I slid Calvin into his johnny-jump-up, put on some music and parked on the couch to post to my blog, glancing up at Calvin as I do.

Suddenly, Calvin arched back and pitched sideways in the jumper, his face red, his body writhing. “Oh, shit!” I yelled, and leapt off the couch to unbuckle the straps. His body was completely rigid, contorted into a trembling crescent-shaped wrought iron rail. He was turning blue and I couldn’t get him out, his legs clamped together, his feet stuck crippled inwards in a rigor mortis cramp. I hoisted him high on my shoulder parallel to the ground as if hauling a great log, reached out and tugged the jumper saddle with all my might. I needed to get him on his side so he wouldn’t aspirate. His feet freed then tangled in the blue nylon straps for a second. All the while he continued jerking in my arms.

I got him to the couch and onto his side, whispering, “I love, you Calvin, I love you sweetie.” His smooth skin looked wan and waxy, a sickly greenish cast like glow-in-the-dark paint plastered his face.

When it was over I swept Calvin into my arms and hauled him up the stairs to his bedroom. He’s really like a sack of potatoes, I thought, and when I laid him on the changing table he collapsed in on himself like a noodle, chin to his chest rolling into a little ball, then unfurled as if a corpse.

He’s asleep now. I’m watching him—listening. That’s already three this month. I think they’re on the rise again, these most unwelcome beasts.

Please share.

photo by Michael Kolster

9.20.2011

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

9.19.2011

dark universe

I have a strong desire, when walking Rudy at night, to take my husband’s childhood BB gun and shoot out all of the streetlights in the neighborhood, leaving only the warm orangey glow bleeding out of windows, the occasional lonely twinkling beam from a humming motorcycle, and the smattering of stars above, especially when the full moon is low and bright in the sky like it was last week.

Nights like these remind me of camping in the deserts of eastern Washington when I was a kid: warm winds blowing through the tops of trees making that comforting swooshing sound as I drifted off to sleep, my willowy muscles radiating from a full, hot day in the sun with my friend.

In the deep sapphire sky, as Rudy and I scuffed down the sidewalk, a broad misty streak the shape of an osprey’s spread wing hung like a tapestry above us. Three tiny stars, the handle of the Big Dipper, dunk into a frosty translucent soup. I craned my neck again and the osprey wing had morphed into a menacing skull, drawn and sullen. When we reached the open fields, as we stood in the shadow of a huge pine, the neon moon cast an eerie scene, like those cheap seventies westerns filmed during the day to appear as if it were night, complete with long grotesque shadows and bright, seemingly unnatural, pools of light.

The crickets are out in force right now. I imagine the thousands of fawn colored bugs, like small wooden clothespins, hunkered down amongst dewy blades of grass, some perhaps warming themselves next to a light. They’re like so many of us puny humans, I thought, striving to do their best—just to survive—under an infinite canopy of stars, in a galaxy swirling like silt in a river eddy, in an ever expanding gorgeous dark universe that doesn’t care, just keeps on spinning just as my kid keeps having seizure after seizure after seizure. I thought, here we are with our insignificant little selves, our feet planted firmly in the gravity of this huge gyrating orb caring about people and things that the next guy speeding down the street is oblivious to, and might not care about anyway.

As we turned toward home I peered upwards again. The silken skull had become a feathered arrow, then nothing but a beautiful dissolving silver cloud, a chalk mark wiped scantly with an eraser. The moon streamed through fingers of oaks casting gray webs on the fronts of painted white houses. I looked for my friend Woody seated in the shadows on his porch grasping his usual Manhattan, but he wasn't there. As Rudy and I approached home I thought about all of the people and things I care about most—Calvin, Michael, friends, family, art, beauty. How fortunate I am, in this tiny corner of this obscure world in a universe more vast than imagination allows, and strolling up to the house, a deep red familiar glow pouring through the bathroom window, I thought, how glad I am just to be at home.

photo by Michael Kolster

9.18.2011

jacob

I think my new friends’ son has stolen my heart. His name is Jacob and he’s five-and-a-half years old. He’s a little smaller than Calvin and has a tussley head of wavy chestnut hair. Beautiful light greenish-blue eyes silently stare up from a heart-shaped face as he lies on the couch rubbing his belly. We are just getting to know each other.

I ask him, “Jacob, do you like school?” He pauses a minute, his face shyly turned toward his dad. I ask again and he claps his flat palms together, little fingers spread like flower petals. “Yes, you do! That’s nice. Have you made lots of friends?” His dad tells me about a couple of kids that have been in his class. “Remember Margot?” his father asks him. “I remember Margot,” I add, “She was in Calvin’s class, too. Do you know Margot?” An impish smile appears on Jacob’s face sweet as a sugarplum. He remembers Margot, the little girl with super curly dark hair, long lashes and fair skin. She has seizures too, I think to myself. Thankfully, Jacob doesn't have the seizures yet. I hope he never does.

Jacob’s mother lifts him off of the couch and buries her head into his neck smothering him with kisses. She plops him down by the open window and he stands, legs slightly bent and apart for balance, waving his hands and cooing. He’s uber-cute, reminds me a bit of Calvin.

We finish our glasses of wine and my friend and I start heading out to grab dinner. Jacob’s dad gathers him up in his arms. More smooches from mama. Jacob kisses and offers his palm to say goodbye to me. At that moment I wonder if our boys could become pals, like me and his mom. Calvin has never played with other kids, only been in their midst, never really interacted in any meaningful way save the occasional touch or pat. Perhaps these two boys share something more in common, could enjoy each other's company over time. I'd like that, I thought.

After a nice visit over burgers and fries, on my drizzly drive home it was hard to make out the road everything was so black and shiny. I was eager to get back to see Calvin nestled into his new bed that's big enough for me to crawl into with him, though I haven't ... yet. I bet Jacob's parents sleep with him too, at least sometimes, I thought. There's something about sleeping with your child whose words are absent—whose future is so uncertain and seems to balance on a wire—something so primal, simple, essential.

At home I reach through the safety net on Calvin's bed to cover him. I stroke his head and think I love you. In my own bed I curl up next to my warm, slumbering husband. I imagine, for a few seconds, Calvin and Jacob playing on the carpet together, toys spread out between them. Then, with the familiar white noise of the baby monitor hissing like moist steam from a radiator I slip off into my silent darkness and dream of friends past, present and non-existent.


9.17.2011

everything and nothing

god is nature,
the wind, the rivers, and the trees.
god is the dimple in my son’s smile,
the dirt path under my feet and the rotting leaves, 
the tears traveling down my cheek.
god is the cancer in my dead father,
the warm embrace of a friend,
and the smooth palm 
i am holding.

god is the universe,
a supernova, a galaxy, a meteorite.
god is math and science, plus and minus,
poetry, dance, theatre, art, music and language.
god is the lethal venom in a snake’s bite,
my deep despair and painful grief.
god is change, forward motion,
growth and
balance.

god is a birdsong,
the look in my lover's eyes.
god is my son’s ravaging seizures,
the vacuous cold of space,
the dazzling glint of sunshine off of rippling water.
god is cruelty and kindness.
god is a tsunami, an earthquake,
famine and 
war.

god is the sweet taste of ripe fruit,
the bitter talc of cocoa bean,
an endless pebble beach with foamy lapping waves,
the scalding volcano someone jumps into.
god is complex and simple,
beautiful and hideous.
god is everything at once,
and nothing
at all.

photo by Michael Kolster

9.16.2011

choosing death

Before sitting down for dinner I had to show my dad my hands, palms down, so that he could check to see if I was biting my nails. Our hair had to be brushed and, in winter, he’d make sure we were all wearing undershirts to keep from catching cold in our drafty house.

Dinner conversation between the eight of us ran the gamut from silly jokes, school, sports, teasing my mom about her bad memory or her cooking, unfinished chores and the like. One occasional subject I remember, however, was my parents’ plan in the case that either of them ever became a vegetable. “Pull the plug,” they’d cheerfully pipe. It became clear to me that neither one of them wanted to be a burden on the other, or on us kids and that, in certain cases, they’d choose death.

My dad died far too early but never became a vegetable, just thin as a thread, zoned out on morphine, and terribly feeble, a shock to witness having known him to be a pillar of strength and agility his entire life. My mom survives him, though she often has no memory of their union due to her advancing Alzheimer’s. Sometimes she’ll recall him and say, “how did he die, again?” and then, when I tell her, she outrageously mutters something like, “rats” or "dammit."

In the early years after Mom’s diagnosis she spoke about “offing” herself at some point. “I have a chemist friend,” she’d spout, implying that she could easily get her hands on some lethal aid if and when she reached the stage where she didn’t remember people anymore. I always respected her desire, having grown up a firm believer in the right to die. Some religions believe it’s a sin. Even as a kid I remember thinking, how odd that god would punish someone who wanted to die because they were suffering, whether physically or mentally. That kind of god doesn't exist for me.

These past couple of weeks I’ve been thinking a lot about my friend who has been at his dying mother’s side. She’s in her eighties and has advanced stage breast cancer and, rather than endure radiation and chemotherapy, she’s chosen to die by fasting. He sends word through email, updating me on her mood, her level of comfort, her gradual progress toward death. He told me she is grateful for every little kindness and tells me she says things such as, “gosh, it’s all going so well,” and, “I’ve had such a wonderful day.”

Though I believe in my heart his mother is happy with her decision, having never met her I have only my imagination and my friend’s written words to rely on. When I think about her incremental perishing from lack of food and water—save rolling ice cubes on her tongue—I get a hollow, almost nauseous, pit in my stomach. I tell him as much—that I can’t completely understand my feelings on the subject though I am grateful for his sharing of such an intimate experience. But as soon as I focus on the end to her suffering—knowing that her life is in her own hands, her beloved son seated in the chair next to her bed holding her hand as she reads, showing her pictures of the people she loves, reading to her—the queasy feeling in my gut melts away into great peace of mind and body. It makes me think of my own parents and their end-of-life views.

I remember the last conversation I had with my dad. I was in New York City for business. When he picked up the phone I was surprised to learn that he was at home alone, something that hadn’t occurred in months since he’d been in and out of the hospital battling pneumonia. “Whatcha up to, Dad?” He told me he’d brought in a small load of wood, swept the garage and checked the oil in the car. His voice sounded strong, smooth and upbeat. “Wow,” I remarked, “that’s a lot ... feeling good today, huh?” He paused for a moment before saying, “Yep, I think I’ve finally turned the corner.” At that moment I wondered which corner he meant—wondered if the cancer that was eating him alive would finally take him out of his misery, the painful misery that I’d seen literally bring him to his knees at Thanksgiving. I wondered if he knew the irony in his words. Before dawn the next morning the phone rang in my dark hotel room. My dad had died.

Although I was grieving I wasn’t shocked at all. Instead, I felt relieved that he didn’t have to suffer anymore and that he had died on the best day he’d had in weeks, on the first night in months that he’d slept alone in the house with my mom. To me, it seemed right. He had fought a terrible battle and had finally given up to be at peace. His death seemed in keeping with everything he used to say around the dinner table when we were kids. Though all my life I knew him as a fighter, perhaps he chose death, maybe he met his match.

And at night when I fall asleep, I've been pondering this choosing of death, which takes me then— inevitably—to images of my two friends whose young sons live now with terminal syndromes, and of Calvin whose dangerous seizures hold sickeningly constant. These boys cannot choose nor can they understand, I say to myself, at which that familiar, hollow pit in my stomach returns, so I take a gulp of water hoping, choosing, to fill it all back up.

I learned of my friend's mother's passing a few hours after having written this. He wrote, "We had Mom’s funeral today and it was beautiful.  She is now at rest, 'sleeping under the ivy,' as she viewed death."

photo of his mother by Macauley Lord

9.15.2011

nobody need wait

How wonderful it is that nobody need wait a single moment before starting to improve the world.

—Anne Frank

Anne Frank, June 12, 1929 – early March 1945

9.14.2011

humpty dumpty kid

Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall;
Threescore men and threescore more,
Cannot place Humpty Dumpty as he was before.

—English nursery rhyme

They keep coming—these seizures—reliably, awfully, no matter what we do to halt their progress, dampen them like hot embers being fed a dry breeze. They’re a squirrely moving target, at a thousand yards in high winds, a low sun—blood-red and blinding—nearly impossible to hit, no silver bullet to employ.

Every time Calvin has one (he did again at naptime yesterday and it’s only day seven in spite of a recent increase in medication) I think of that eighties anti-drug television commercial with the sizzling egg in a hot pan, “this is your brain on drugs,” the voice-over says. I can only imagine that the unharnessed electrical activity ravaging Calvin’s brain must be frying it inside out, like a microwave or a white-hot poker jabbing, burning and scarring his delicate, developing tissue. Every seizure must be like a mini nuclear bomb, the millions of tiny molecules and cells in his young, growing brain—his brain that is trying so very hard to learn essential, foundational things—getting scrambled into some unrecognizable, unsolvable puzzle that can never be put back together again, made sense of. My poor little Humpty Dumpty kid.

The lessons—skills really—that Calvin is trying to learn just keep getting interrupted, like a parent trying to digest a newspaper article while every few minutes his kid—interrupting—yanks on his shirtsleeve to ask him a question, “Daddy, Daddy, Daddy.” The neuropathways, which my son is so lacking in, seem to get tangled in menacing knots so tightly the arteries are simply cut off, leaving a series of dead ends—roads that go nowhere—abandoned, left to crumble, decay and wash away with the next flash flood that occurs inside his precious skull.

I see that frying egg every time we increase Calvin’s anti-seizure drugs, too. On top of the debilitating, brain-rotting seizures go the spuriously innocuous anticonvulsant medications meant to stop the seizures by slowing brain waves. Slowing brain waves. That equals slower thinking, slower reaction time, slower development. At what point—since we keep having to increase Calvin’s seizure meds because there is no cure for epilepsy—will his development simply plateau? Will he be locked in at a one or two-year-old level for the rest of his life? Will he regress? Will he die from a seizure that just never stops like a runaway train that derails above some dark, craggy ravine—like poor Humpty Dumpty who fell off of a wall?

Help bring us one step closer to a cure for epilepsy by sharing Calivn’s Story. Calvin and I do the hard work. You just push a button.


9.13.2011

get busy living

I was reminded of a saying the other day that I like a lot: “Get busy living or get busy dying.” Hearing it made me think about my parents and how they taught me, through their actions as much as through their words, to be productive, keep busy, make the most of my time, of this life.

When we were kids and were old enough to work my father gave us a choice, “you can get a job, do a sport or work in the yard.” Somehow we got roped into all three. I have to say that, though I pretty much detested weeding and gathering fir cones off the gravel driveway and hand clipping the grass around the swing set posts and trees, and though I loathed going to swim practice knowing the pain and suffering I faced, and though I might have preferred hanging out with my buddies instead of going to work, I followed the example that my parents set for me because I knew they were right, they made sense—they were no slackers, and I didn't want to be one either.

The six of us kids didn’t get an allowance, we were just expected to pitch in and earn our keep, which, once my father explained it to me, made a lot of sense. At a young age I learned that hard work paid off and when I turned eleven I bought my first bike, a sleek sparkly blue Peugeot ten-speed. It cost me $118, way back in 1974, purchased with money I had scraped together from babysitting for a wage less than a dollar an hour. When I was fifteen I got my lifeguard certification and completed a course to teach swimming lessons. I put myself through college, with minimal help from my dad, by lifeguarding, teaching and coaching swimming. I’m very proud of that. I know my parents were, too.

So now I am the parent, and as Calvin’s mom my job has become physical therapist, occupational therapist, speech therapist, nurse, epilepsy advocate and blogger. And though these jobs are all-consuming, and though I have the help of my husband and a part-time nurse, I still find myself yearning for more hours in the day to do all the things I want to like gardening, walking Rudy the dog on the beach, being with my husband, writing more, reading, hanging out with friends and talking with my long-distance loved ones on the phone. But I do as good a job as any at packing in as much of it all as I can. And it goes almost without saying that Calvin is a workhorse just like his mom, his dad and his grandparents.

I remember once, when I must have been in junior high school, asking my mom if she was mature. She told me that as long as you live—and if you want to—you keep growing and maturing and learning new things. So I want to do it right, make the most of this life—not sit on my butt like some couch potato—improve myself. Otherwise I may just as well get busy dying.


9.12.2011

kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young and vivacious manager, wearing her slim peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large hand painted bowls filled with rum and fruit juice.

As the night wore on, and a green pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the girl (and I don’t use the word in the pejorative sense that many men and women who I know use it) can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. The dose was changed with no apology or recognition of error.

My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin before and thus it was carried out amidst his thrashing and terrified shrieks of pain. I told her about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which then I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented I.V. specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids—who can’t walk by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength (luckily we and the boys are resilient as spiders silk, the strongest fiber known to man)—stories that might have been completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy drop earrings jangling to and fro as she expressively bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, “yes, I know ... I know.” And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

9.11.2011

toward the sun

I remember hearing a story about a father’s last words to his four-year-old daughter. Sadly, those words were heard from an answering machine rather than face to face. He was calling on his cell phone from United flight 93 on September 11th, 2001. He told her that he’d be watching over her every day of her life.

Immediately, I felt the bitter twinge of that family’s loss, the loss of that little girl who’d never again see her father’s kind face. He wouldn’t be there to wrap his arms around her when she fell off of her bike and scraped her knee. Never again would he tuck her into bed, read her a story, brush the hair back from her face lovingly and kiss her goodnight. He wouldn’t be there to help with her homework, show her how to kick a soccer ball, teach her how to drive, help move her into her first apartment or embrace her at her wedding.

When it became more and more evident that Calvin’s development was severely impaired—when he continued to miss important milestones like learning how to crawl or even having the strength and coordination to keep his head up—and then when he started having seizures, I found myself tumbling into a seemingly bottomless well of despair. It was dark and cold down there, not much light save the glow off of close, dank walls. I felt I had lost what I never even had—a healthy child—a chance at experiencing the joys of parenthood like the ridiculously happy images you see in glossy pages of magazines scattered in the pediatrician’s office: the glowing, full-term melon-ripe mothers, the chubby dimpled babies, barefoot in diapers pulling colorful wooden trains at the end of a cord, the Barbie and Ken parents with kids perched on their shoulders, faces smiling toward the sun, shadows cast behind them.

Instead, I lived within a shadow that stretched as far as my eyes could see, like the scorched path of a fallen plane. I was pacing the aisles of shiny infants' toys for my four year old who still might not know how to use them, buying box after box of baby wipes, researching anticonvulsant drugs, going to the geneticist, the gastroenterologist, the neurologist, the emergency room instead of the playground, the zoo, the mother and child library music group.

Sometimes I wonder if my experience of loss was—is—anything at all like the little girl whose father died. I lost—never had—a healthy son, but we're likely similar only in the way she’ll never again hear her father say, “I love you,” and I may never hear the same uttered from my own son. The profound difference is that I have Calvin right here beside me to love and hug and kiss—at least for now. And, I am fortunate, for it was Calvin—his constant happy presence—who helped me climb out of my deep dark hole. I meditate on that while keeping that little girl, and others who have lost loved ones, in mind. I can only hope that her father’s last words to her, the infinite repetition of them, help to keep her on high ground, her face always smiling toward the sun.


9.10.2011

things i dig

When Calvin looks me in the eyes and smiles. Shumai burgers. A strong body. Loyal friends. Zappa plays Zappa. Sweet corn. Restful nights. My nephew's jokes. Walking with Calvin holding hands. Thunderstorms. Iced lattes. Memories of my dad. Kids who weed for me. Neighbors (mostly). New growth. Charity. Haddock sandwich with cheese and tomato. Bird songs. The look and smell of dark mulch. Immigrants. The west. Compassion. Sea salt and vinegar potato chips, right? Clean teeth. Dogs, especially Rudy. Calvin’s giggles. A good poem. Watching Calvin sleep. High school reunions—seriously. My husband. Writing. Grilled lamb chops. Broadminded, unselfish folk. Maine. Long walks on the beach. Honesty. The smell of basil. Our universe. Homemade nachos and a movie. Soft grass. Thoughts of Calvin seizure and drug free. A good nurse. My mom’s laugh. Helping others. Admitting wrong. Walking on paths lined with blueberries and eating them. Rivers. Phone calls from old friends. Peonies, tulips, lilies and flox. The F-bomb. Foreign films. Morning strolls in the garden with my coffee. Water skiing. Narrow cobbled streets lined with old brick buildings. Mediterranean food. My father-in-law's wine. Sweet dreams. Calvin's kisses.

photo by Michael kolster

9.09.2011

summer

Sitting on a miniature blue plastic chair in front of twenty first-graders was a first for me, but I survived. The kids were curious about their classmate, my son Calvin, so I offered to visit and tell them a little bit about him since he can’t do it for himself.

The children sat attentively on a speckled grayish carpet while Calvin perched in his one-on-one’s lap on the floor just to my left. Having increased his morning dose of seizure medicine he appeared a bit of a zombie—lids drooping over vacant eyes, slack lips with some excess drool soaking into the rolled pink kerchief tied around his neck. I hate to see him this way, so glazed and expressionless, but often that’s what the seizure drugs do—transform him into a rag doll boy I hardly recognize.

I told the kids that Calvin was born too early, that he wasn’t quite ready to come into the world, and that his brain was a little different than theirs. I asked them to imagine going to the grocery store with their mom or dad and what they thought might happen if the road were blocked. One bright boy with a lazy eye and thick glasses raised his hand and said, “we’d have to go a different way and it would take longer.” Just the answer I was hoping for, I thought. “That’s how it is for Calvin to learn things,” I said, “his brain has trouble telling his body what to do—runs into roadblocks—and so it takes a very long time for him to learn things.”

Next, I opened up the floor to questions and several skinny arms eagerly sprang from their laps. ”What’s your name?” I asked, “and what’s your question?” One by one the little tykes rattled off their queries, some stumbling a bit as they went:

“Um, Why does Calvin drool so much?”

“How come he bites his shoe?”

“Why can’t Calvin talk and why does he wear that bandanna around his neck?”

“What’s that blue thingy he wears that you hold on to?”

“How come his eyes go back and forth and back and forth like that?”

“Um, how come Calvin flaps his hands and puts them over his ears and makes those funny sounds?”

I tried to answer each question thoughtfully, equating many of Calvin’s tactile and self-stimulating behaviors to thumb sucking, and blaming the drugs for his drooling and poor balance. To the best of my ability I explained what side effects were and described Calvin’s seizures as a lightening storm in his brain that he can’t stop and that makes his body shake and shiver. And finally, another boy asked:

“How come he still wears diapers?”

I reminded him that it takes Calvin a long time to learn everything, including being potty trained. I mentioned how some adults like Calvin have to wear diapers. The flock began to giggle, little hands with little fingers shamefully covering their mouths. I gently told them, without scolding, that it wasn’t funny, but rather, it was sad. Sweet smiles dissolved into solemnity and a little blond fairy sitting next to me, named Summer, raised her hand for the second time. “I’m so sorry for you and your boy,” she quietly peeped in a clear voice. My throat tightened and I got that familiar sting in my nose. I swallowed the lump, held back my tears and, without trembling, was able to get out, “did the rest of you hear what Summer had to say?” I repeated her words and added, “isn’t that so kind and caring?” In a blink of an eye several more hands thrust upward. “I’m very sorry for Calvin, too,” one child added ... and then another ... and another.

By that time the kids had started becoming restless, so I ended by saying how much Calvin would like to have friends and that he’d be their friend, too. Mary, Calvin’s one-on-one, and I took Calvin by the hand and lead him out of the room saying goodbye to his classmates as we went. Just outside the door Summer stopped us. I turned to her as she reached out her dainty arms and gave me a big hug. I knelt down to receive it with a warm embrace for her. Then she put her arms around Calvin from behind, and as she did he fell back into her. Little Summer held him up until he steadied. “I think you are already Calvin’s best friend,” I told her. A big smile crept across her face that I wished Calvin could see and understand.

This morning I felt a chill in the air telling me that autumn is already on its way. A long, frigid winter isn't far behind and after that we'll have a rainy, muddy spring. But it warms my soul to know, now, that my precious little Calvin will get to enjoy the warmth of Summer every weekday all year long.


9.08.2011

eye on the ball

If you’ve ever tried running a three-legged race you might have a bit of insight into what it’s like going about my day with Calvin. He and I are like a Siamese twins. Although we are not joined at the hip, we might as well be, tethered to each other the way we are all throughout the day.

Since Calvin, who is seven, cannot walk by himself without the risk of tripping and knocking his teeth out, running into corners and walls with his forehead or falling down stairs, I’ve got to keep my hands on him, or his harness reins, at all times. If I try to do two things at once, like pour myself a glass of water or hang up my coat, I risk dropping him if he tips off balance when I'm not ready. I’ve got to keep my eye on the ball, so to speak, like my dad used to tell me when teaching me how to catch a ball or how to swing a racket or bat.

I remember when a close friend came to our home for a visit. He arrived out of sorts. He went on to explain that the neighbor’s child, while holding his infant son in her arms, had accidentally dropped him onto the paved driveway. The baby had been squirming and simply got away. At the time, even though I could see his grave concern over the incident—his sickly expression at recounting the event—I couldn’t quite imagine what was so upsetting, because I had no children of my own. The fall was only a couple feet, after all.

Now, I know all too well what a tumble like that can mean, especially for Calvin since he's getting bigger. Taking my eyes off of him for one second can result in a bad fall. Years ago, when he was much smaller, while two of his nurses were chatting together, Calvin between them just at their feet trying to stand up, he suffered a bloody, swollen nose when he unexpectedly pitched forward, neither of them holding him, and slammed his face into the floor.

Luckily, Calvin’s bad falls are few and far between and it is because we—Michael, the nurse and I, and his one-on-one at school—are on constant alert, our focus being on Calvin's safety, and little to nothing else, as he motors around the house like a little drunken sailor sporting a bobblehead. And all the while my dad's voice is ringing through my brain, "keep your eye on the ball."

9.07.2011

a dark alley

Yesterday was day ten ... again. I wrote—cynically, suspiciously—in the journal the night before last that I thought Calvin’s day was “too good to be true.” Unfortunately, I was right.

Since May, amidst several drug increases, Calvin remains on a nine to eleven day cycle between seizures, and yesterday proved no differently. He’s been taking half of a bubblegum pink horse-sized amoxicillin pill twice each of the past four days—in addition to his regular battery of other drugs—for a mild ear infection, the cause of a seizure several days prior. But on Monday, his balance had improved and his mood was temperate, though he was unusually placid in the high chair waiting for dinner—you know, the calm before the storm.

Yesterday at naptime, a few minutes after falling asleep—and after some unusual laughter in the johnny-jump-up earlier—Calvin had a two-plus minute convulsive seizure. It was milder than most, but seeing your kid jerk and shake and not breath for minutes isn’t a stroll in the park, more like wandering down a dark alley, a vicious thug lurking in the depths ready to clobber the living daylights out of you and your kid only to leave you both there to wither and ... die?

So, as Calvin’s nurse was upstairs watching him like the hawk that she is while he fell back into a deep coma-like slumber, I was downstairs Googling drugs—anticonvulsant drugs.

Calvin takes Clobazam, a benzodiazepine derivative related to Valium and available to us from Canada at about a dollar per pill. He takes two and three-quarters of the little white gems each day. The other is Banzel, brand name for Rufinamide, of which he gets six, three with breakfast (the breakfast of champions) and three with dinner. So now, what with three reliable, intense, long convulsive seizures each month, what might be our next drug of choice? They all cause headache, dizziness, double and blurred vision (Calvin’s vision is already off the charts terrible) somnolence, loss of balance and coordination, nausea, fatigue and memory problems just for starters. The drugs are probably why he’s remained on the verge of walking autonomously for four-and-a-half years. His balance gets no better, really, I think he just gets stronger and more adept at catching himself, though that isn’t saying a lot because nearly every day he goes down, and sometimes pretty hard, and sometimes right on his noggin, even though we hold him.

I email his neurologist, her nurse and her dietitian and I copy Michael and Calvin’s pediatrician and his nurse. I explain the circumstances. I offer possible options from what I have researched and I wait for their advice. It’s been the same cycle for five-and-a-half years, and I cringe when I think of having to feed my precious little first-grader his ninth antiepileptic drug. I fear an allergic reaction, a lethal reaction, a developmental reaction, a behavioral reaction, a paradoxical reaction. But with no other choice beyond more seizures I push the button and send.

So I sit here quietly, in the calm before the storm. The only thing I can do is to get the advice and go with my gut. Neurology is a practice—a game of chess—hard to see the consequences of any move you make, no matter how carefully you do it. Easy to back yourself into a corner—down a dark alley—your only hope in hell is that you’re wearing your kick ass boots and that it’s not a sinister bricked-up dead end street.

Calvin after his seizure, photo by Stacey Morse

9.06.2011

defining epilepsy

I once had a friend who married a woman with one leg, the other having been amputated when she was a girl. When we first met I didn’t know this about his wife, having never met her, only seeing her from afar driving off in her station wagon, her bobbed white coif peeking out from behind the steering wheel. “My wife is an amputee,” he said one day. I was taken aback, not by the fact that his wife had a prosthetic leg but by what he called her, how he defined her. He didn't go on to describe her otherwise. I told him that she wasn’t her cut off leg, her artificial leg, she was a whole, complex person and by calling her an amputee it reduced her, at least in my mind. In any case it bugged me, like when folks call homeless people “bums.” I find it offensive.

I have a similar reaction when someone innocently asks, “is your son an epileptic?” I quietly bristle and reply, “yes, my son has epilepsy,” hoping they’ll note the difference. Not long ago I was having this conversation with a friend I hadn’t seen in several years, explaining my thorn about how certain individuals are defined with one broad term. He had the same reaction and added, thoughtfully, that society doesn’t call someone with cancer “cancerous.”

Perhaps I am overreacting—which I sometimes do—after all, people with diabetes are often called diabetic and somehow I don’t find that offensive. But to distinguish, epilepsy has an age-old stigma attached to it of being associated with demonic possession, lunacy, and contagion. At one time it was believed to be the product of malign forces and sinful behavior and, in more recent history, something to be ashamed of. People with epilepsy were often fettered away and shunned by society. Parents of children with the disorder secreted them behind doors. Even today, children with epilepsy are singled out and contemptuously mocked in films.

So yes, my son Calvin has epilepsy, but that is not who he is or what he is—it does not define him. It simply afflicts him and, most regrettably, there’s not a whole lot he can do about it until we find a cure. Until then, he’s a sweet little boy full of smiles and giggles who has to deal, senselessly, with relentless seizures and mountains of mind altering, debilitating drugs. My son Calvin simply embodies—defines—everything one could say about love.

Please be a hero and share this story on your Facebook page or forward the link. Don't be afraid. Give it a try. It doesn't hurt a bit and it could do a whole lot of helping.


9.05.2011

daddykiss

I love to see how much Calvin loves his daddy. It is as plain as day, as clear as the nose on my face, as evident as the sun coming up through the trees, as beautiful as the smile Calvin has when Michael rubs bristly cheeks into his soft ones. And after some snuggles and hugs and giggles and squeals Calvin gives his daddy a kiss, opens his mouth wide and rests it on Michael’s nose, his forehead, his cheek—gently—and Michael responds, “ohhhhhhhhh—daddykiss!” at which Calvin smiles again, knowingly.

In that moment, who cares if the sun never comes up. I’ve got my very own sparkling rays of light right here to warm my soul.

9.04.2011

milagres

I’ve always thought it mildly amusing that my girlfriend’s mother prays to Saint Jude for me. It's not the fact that she prays that I find amusing, but rather, who she prays to, because St. Jude is the patron saint of desperate cases and lost causes. Although Calvin was born with pretty serious afflictions I have never thought of myself—or him—as a lost cause. So I have to chuckle, but at the same time I appreciate her sentiments. I know she loves me. Perhaps she prays to St. Jude on my behalf because she might have turned to him when her two-year-old daughter fell into their pool and nearly drowned, was in a coma for six days and reverted to that of a newborn infant. The girl survived, perhaps miraculously, though more likely because her mother resuscitated her and saved her life. She's grown now and has a beautiful family of her own.

When Calvin was three or four, on one of our trips to his neuro-ophthalmologist in Boston, while in the waiting room I got to talking with a man who was there with his granddaughter. She had been born several months early, a twin whose sister had died at birth. In a thick, gravely South Boston accent he told me that the little girl had retinopathy of prematurity (ROP) a common visual impairment of preemies thought to be caused by oxygen toxicity (as I understand it, from artificial respiration) and/or hypoxia. I told him that Calvin was also premature and suffered from acute myopia as well as cerebral visual impairment (CVI), his white matter—the neuro-pathways—to a great extent absent.

The man, a ruggedly handsome barrel-chested, white-haired Italian, reached into his trouser pocket and plucked out a black velvet satchel with a satin cord and handed it to me, “this is for you to keep for your boy.” With clear eyes the man continued to tell me that the ivory rosary inside, though broken in places, had saved his granddaughter’s life and allowed her to see. “Now it is for you and Calvin.” I poured the beaded chain into my palm and regarded the crucifix. In the center of its engraved arms was a tiny inlaid brass-framed window, into which the man bid me to look. With one eye squinted I held the cross up to the light and peered in. Inside was a miniature etching of Saint Anthony of Padua holding baby Jesus in his arms. “Keep it with you,” he said, “it has brought us good luck.”

Once home, I Googled St. Anthony to learn he was Portuguese and that his patronage was to seekers of lost articles and the lost articles themselves. Was I lost? Was Calvin lost? Was Calvin lost to me? I wondered, reflected and conceded. I realized that I had often asked myself those questions at various moments—sometimes at once—wondering where it all went wrong. Would I ever get my life back? Would Calvin have a real chance at living a life with decent health, good vision or simply the ability to live seizure free without horrific side effects from the mountains of drugs he’s had to ingest into his perfect little innocent body?

Then, I remembered the trip Michael and I took to Brazil before we had conceived Calvin. Three sultry weeks we luxuriated in the vast romantic country tightly braided with European, Latin, African, and indigenous roots. We visited a church up the coast in Salvador de Bahia. In a small back stucco room hung milky wax relics—hollow arms, legs and heads—hanging from the rafters, some tied with ribbon and others with stickers bearing names of victims, of the ill, the wounded, the infirm, sent by their loved ones in hopes of a blessing and a milagre—a miracle. I tried to imagine what their god was doing about these poor, suffering, seemingly forgotten souls whose pocket-sized photographs plastered the walls in a grid resembling pixels in one of those gigantic portraits that are comprised of smaller ones.

Prayer, I’ve always thought, can’t hurt. It's no different, really, than sending out super mojo or positive vibes. After all, we're all connected in a gorgeous universal web of life formed from stardust. Though to be honest, with regard to praying to "Him" I question beseeching a god who lets little kids suffer, withholds mercy, allows pain, murder, torture, war, famine, poverty, genocide. Not a god I can believe in. And the argument of “original sin” and “free will” as the root of the world’s ills—freeing god from any culpability—is in my humble opinion, feeble—mans attempt at explaining the unexplainable for his own comfort and an aim at keeping order, particularly troubling considering the presumption that god is all-loving and omnipotent.

Still, the rosary sits inside its little black pouch on my dresser, collecting dust along with a handful of smooth gray ringed rocks, half of a sparkling violet geode from a dead friend, the tiny baby oyster shell with its red ribbon that once looped around the platinum wedding ring I gave to Michael when I proposed, and a bowl full of dried lavender atop a wooden humidor containing letters and other mementos. I keep it because the old Italian man meant it for Calvin. But the only miracle I have yet to see is its minuscule image of St. Anthony de Padua behind a glass window no larger than the head of a pin.

photo by Michael Kolster

9.03.2011

sometimes angry

Sometimes I am so angry—seething really—at the endless seizures and drugs that I can't even see straight. They are the root cause of sleepless nights, Calvin's poor balance, stupor, hyperactivity, drooling, falling down, my sore shoulders and worry, his blank stares, gross inability, speechlessness, the painful blood draws, weary trips to Boston hospitals, dirty diapers, our lack of freedom and autonomy. Stop the seizures? Then we could eliminate the drugs and the rest might very well vanish into thin air.

Please share Calvin's Story on your Facebook page or forward the link. Help promote epilepsy awareness and bring us one step closer to a cure. It's as easy as pie. Really.

I dare you.

9.02.2011

a good mom and a good fixer

My mother was known by my friends as one of the best cooks in our neighborhood. It wasn’t that she excelled in haute cuisine, indeed she overcooked vegetables and knew nothing of pasta al dente, but she warmed the hearts and stomachs of many. My brothers and I would say to her after meals as we were clearing the table, "you're a good mom and a good fixer."

Just the other day I was telling my nephews about her homemade cake donuts, crispy deep-fried then coated in powdered sugar, and about her battered chicken drumsticks. I remember devouring hot polish sausage with russet potatoes, sweet onions and mozzarella baked and bubbling in an oblong glass pan. On the rare occasion Mom broiled a steak. We consumed plenty of casseroles and baked fish of all kinds. She topped salmon with a creamy egg sauce and threw together a pretty mean spaghetti with whole olives and ground pork, served with a plank of buttery garlic bread broiled open-faced. On camping trips Mom breaded and pan-fried the razor clams we harvested and served us mountains of potato salad chalk full of olives, green onions, hard boiled eggs, a ton of mayonnaise and a bit of mustard and pickled relish.

My mom’s breakfasts were my favorite, eggy and rich, sweet and savory. On her broad skillet she flipped all types of pancakes: buckwheat, thin Swedish, dollar-sized, buttermilk, and sourdough. Her oven bore moist German pancakes, bubbly golden Dutch Babies and brown sugar strudel coffee cake. Moist blueberry muffins were my friend Lori's favorite, which we traded her for rides to swim practice, and Mom fried up banana fritters on occasion, too. Almost every weekend breakfast boasted a broiler pan full of juicy sausage links or crispy bacon and a bowl of dad’s homemade cinnamon applesauce. Eggs were our friends—scrambled, fried or soft boiled.

My dad had a sweet tooth that he passed down to most of us so Mom always had at least one dessert going—sometimes two or three: blackberry cobbler, angel food, red velvet and German chocolate cakes, Boston cream pie—my brother Alan's favorite—tollhouse, snickerdoodle and peanut butter cookies, apple, berry, peach and cherry pies, all sporting huge scoops of vanilla ice cream on the side.

In stark contrast, for the past four years, my boy Calvin has remained on a rigid diet which required me to weigh every morsel of a narrow range of mostly fatty foods to the tenth of a gram—equal to about one drop of olive oil. This high-fat diet (with almost no carbs and zero sugar, so not as delicious as it sounds) was aimed at stopping, or curbing, his seizures, but it never made a dent, only turned him into a zombie and stunted his growth, though I've known some kids whose seizures stopped all together because of the diet. So recently we have abandoned the diet. I cannot describe how liberating and fun it is to reintroduce old and new foods to him, albeit cautiously. Perhaps one day Calvin can know the pleasure of a fresh donut or perhaps a spoonful of chocolate chip cookie dough melting warmly in his mouth. It might sound ridiculous, but sharing with Calvin the delights of food would make me very, very happy, like—no doubt—it did for my mom.

Harriette May Shake