like an earthquake

The screaming, which had improved some after a complete, prescribed evacuation of Calvin’s impacted bowels, had begun rearing its ugly head again. The not-knowing-why is nearly as bad as the screaming itself—both excruciating to the senses—particularly when it torments such a sweet little kid like Calvin who can’t tell us what is wrong.

Yesterday, Michael and I had taken the boat out to get some much-needed quiet away from what has become the house of poop and shrieks. The wind chopped up the bay as we skirted around hundreds of lobster buoys dotting the waters off of Mere Point—red and white striped corks bobbing to the clang of ships' bells. Michael fished for striped bass off the back of the boat while I soaked in the sun, a tie-died towel draped across my lap, watching several pairs of mallards shuttle their ducklings through the waves. Out there on the water I always feel close to completely relaxed, feel like my old self, my self before Calvin was born.

Once home I grabbed a quick shower, my hair matted and oily after not having washed it for three days, then skipped downstairs to relieve Calvin’s nurse. She’d put him in his high chair while she wrote her notes in the daily journal. Immediately, Calvin started to shriek. I held his hands softly to calm him. “Calvin’s palms are all clammy,” I remarked, “just like they were before his last seizure.” I glanced over my shoulder at the journal where on Thursday, in its margin, I’d written SUSPICIOUS OF SEIZURE TO COME. I’d expected one—even though the pattern of his recent seizures implied he wasn't yet due for one—because he’d been so goddamn wound up the past several days, running around like a chicken with its head cut off, screeching and flailing like an angry chimp. I pulled off his shoes and socks. His feet were damp, too. He continued to scream and writhe so I took him out of his high chair as fast as I could, hoping to help him release what I figured was probably some painful gas.

Our buddy Charlie had shown up just as the nurse was leaving and as Calvin was making his transition from raving lunatic to our little roving robot, wearing paths through the house in repetitive loops around furniture, up and down stairs. The three of us retired to the living room with our evening beers while Calvin crawled on the floor at my feet. Just after we’d toasted our gathering, Calvin silenced then made a couple of odd, bird-like chirps. I bent down to look at his face and watched all of the color drain from it. “Here it comes,” I said, and scooped him up and laid him on the couch on his side. Michael and I knelt stroking Calvin’s face and legs while Rudy came up and gave me a kiss. “Stay here,” I pleaded to Charlie, “I need you here.” And so he did, and he watched the whole three-minute ordeal while Calvin stiffened and convulsed and stopped breathing and turned blue and twitched and finally began coming out of it. At that point our buddy Macauley arrived and the nurse, who was gathering her things in the mudroom, came back, too.

I thought about how much I want those who I love the most to witness Calvin having a seizure. I want them to feel the intimacy of the moment—the heartache—so that when it happens again, and I share it, I can feel the solace in knowing that they, too, know. Later, Charlie followed us upstairs when we gave Calvin his seizure medicines in four spoonfuls of yogurt before putting him to bed. He had asked us about the pattern of Calvin’s seizures and I’d told him they’d been happening at exactly the same time of day for the past nine months, except this one. He wondered if the seizures were in some way like an earthquake, like a buildup of intense pressure followed by a powerful release. I explained that that’s how I’ve always likened his seizures and we wondered if perhaps there might be some ancient purpose for them embedded in Calvin’s DNA, some protective mechanism. Macauley added in his calm, thoughtful tone, “someday they’ll know.”

And I thought to myself, as the four of us sat closely in worn wooden patio chairs, I hope that 'someday' will get here soon.

Please share and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster


friday faves - 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. The girl is 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.

Originally published 9.4.11.

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The only real failure in life is the failure to try.

 —Sven Goran Eriksson 

My Calvin never fails


notes from precious friends and strangers

I wanted to tell you that I dreamt of Calvin last night. It was one of those extraordinary dreams, in which strange things happen and you awaken wondering just what could have provoked that particular train of thought. He was happy and gave me floppy hugs and then looked in my face and said "glasses." I don't know what it means, and I don't think you probably believe that it means anything, except perhaps that I read your posts and think of you and Calvin often. I hope this finds you and Michael well, and Calvin seizure free today.


im sorry, i know u dont know me, but ... i just wanted to say i loved the birthday story about ur son ... im pretty sure me and u come from different backgrounds, but im here to tell you that your story made me cry with joy, even though i may be different from you ... my reason is because people take things for granted, and forget about being happy and the fact that we are all the same (JUST HUMAN BEINGS) under the same sun ... but i wanna say again thanx for that inspiration and ill take that with me on journey thru life GOD BLESS.


i just want to say how humble i feel right now. when my gorgeous 19 year old was about a year and a half, i told his doctor, "he's into everything!" my doctor was a wise man who said, "trust me. you wouldn't want it any other way." sending you xoxxox and thanking you for the work you do and sharing with us. blessings to you and calvin and you family.


I was thrilled to see Calvin at the Botanical Gardens! He did seem tired, but I must tell you of a few moments of his happiness. Sadie (who ADORES Calvin) sat with him to take some photos and say hello. He was snuggling up with her, chewing on her hair, smelling her neck, and clearly enjoying it! She did too. As we walked away, she said, "I love the way you can always tell when Calvin is happy. He's the goofiest guy in my class, that's why he's the only boy I like." Im so sorry his happy day ended with a seizure, sucky.

—Elsa, Sadie's mom

Hope not to offend you if I tell you that from your blog I can feel all your suffering but there's also a kind of smooth beauty. I think it's the unending, unconditional, everlasting love for your son. Ciao.


Oh Christy, I watched your video of one of of Calvin's seizures. It was beyond powerful—to watch your beautiful child endure this pain and confusion and then enter into a place of unfathomable quiet. I know I understand nothing in the grand scheme of things, but this was a window into some tiny understanding of some small piece of your life and Calvin's. Thank you for sharing it.


I’ve got to quit reading these at work people are wondering why I’m tearing up.


I often times try to imagine if I could live a life similar to yours ... and just that thought alone will travel with me throughout my day, my week, etc. The thought is constantly with me ... when I read about Calvin I feel like I know him and understand him ... honestly, I wish that you lived closer so I could come and play with Calvin and get to know him.


I'm listening. Sometimes I cry when I read. I have nothing else to offer.



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


fourteen-inch woman

Saturday I took Calvin to fill his new lens prescription. Our last appointment with his neuro-ophthalmologist in Boston revealed that his vision, which is five times worse than what is considered legally blind, has worsened. He enjoyed the car ride to the optician listening to his favorite album, Joni Mitchell’s Court and Spark, for about the bazillionth time. And, although the music that I used to think was so groovy when I was a kid now annoys me, I do love peering into the rearview mirror and seeing Calvin’s toothy grin spread across his face when he hears the first song.

I parked, unbuckled him and he tumbled out of his car seat, awkwardly got both feet onto the ground and righted himself. I took him by the hand and escorted him to the curb, past a row of parked cars, all of which he banged on one by one. As we approached the storefront, Calvin pigeon-toeing the entire way and walking like a bobbleheaded noodle, I watched several shoppers behind us in the reflection of the glass doors—a young man with his mother and another middle-aged woman. They all gawked at us in a way I recognized from having done so myself in the past—heads tilted downward, brows raised—as we crossed the parking lot and stepped up onto the sidewalk to enter the shop. They each had what seemed like a mixed look of repulsion and incredulity on their faces. Somehow I felt sorry for them. Perhaps they felt sorry for us.

Instantly, I was taken back to the time that Michael and I went to our first Independence Day carnival after having just moved to Maine. The waterfront street of the small town had been blocked off to through-traffic then crammed with kiosks, carnival rides, games and shacks selling ice cream, fried dough, corndogs, blooming onions and the like. We had just strolled past the twenty-one-foot alligator, which was housed in a long trailer and could be viewed for six tickets, when the sight of a painted placard stopped us in our tracks. In a turn-of-the-century script the sign read, Fourteen-Inch Woman, entree fee four tickets.

Michael and I stepped back to let a large group amble by, some sporting waxy bags filled with popcorn, others with clouds of blue cotton candy atop paper sticks so sweet I could taste it on the breeze. Then two women emerged from the throng and stood in front of the fourteen-inch woman’s booth. As they handed their tickets to the attendant we watched with great curiosity, trying not to stare but failing in our attempt. The women, both unremarkable with their frosted hair, pastel t-shirts, khaki shorts, thick knees, white sneakers and purses slung over their shoulders, entered to the back of the booth, turned then stopped. The subject was hidden from us behind a makeshift half wall. Their stunned, nauseous-looking gazes appeared to travel up and down the mystery figure like pervs at a striptease and though their mouths gaped open like a couple of unhinged mailboxes, they were silent. Then they simply turned and walked away without so much as a single word.

I wondered what they’d seen hidden behind that kiosk wall. Was it truly a live, fourteen-inch woman? Is that even possible? Didn’t that kind of vulgar exploitation only happened in nineteenth-century freak shows? But if it were true, I felt the urge to talk with the woman, to say hello, to ask her how she was, to know her thoughts about her job, her lifestyle, to be her friend. But of course I couldn’t bring myself to purchase four tickets to do the kind of probing that in some ways was no different from the last two gawkers.

I never learned the mystery of the fourteen-inch woman. We returned the following year but she and the alligator had not, but I've thought about her often since then, especially when Calvin and I find ourselves being stared at. It happens all the time, though that’s not to say I’ve grown accustomed to it. I suppose people leer at—and at times avert their eyes from—that which they don’t understand, that which is peculiar. In the past when that kind of sour attention was new and shocking to me I’d stare back and give the oglers my very best stink-eye. Once or twice I might have even told them, “take a picture, it lasts longer,” though perhaps I’m imagining that. But now I usually just smile at impolite onlookers and keep on walking hand in hand with my sweet little bobbleheaded forty-three inch boy.

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detail, photo by Michael Kolster


a gentle spirit

A gentle spirit has come into my life
To make me see things I did not want to see,
To make me feel things I did not want to feel,
To teach me things I did not want to learn.

This gentle spirit has hurricane force
That picks me up, turns me this way and that,
And puts me down softly in a new place,
Always a new place.
I cannot return to the safe warmth I once knew,
It is gone forever.

Because of this fragile, gentle spirit,
Joy and sorrow have become intertwined
In a fiber of life that few can comprehend.
Because of this sweet, gentle spirit,
I can appreciate what is often assumed.

— Jan King 
photo by Michael Kolster



When Calvin was eighteen months old he said the word, "mama," clear as a bell. Michael and I were shocked, didn't believe that it was purposeful but rather more like a fluke of vowels and consonants tumbling out of his mouth in just the correct order as to make the word. He never said it again.

The closest Calvin has come since then to uttering any word is, "uh-uh," which seems clear is his way of saying "mama." He only says it from bed when I walk into the room to say goodnight or when he wakes up and wants me to come to him. Lately he seems to be saying it less and less. I wonder if one day it will vanish into thin air like so many other skills he's lost over the years.

It is beginning to appear, though—despite his incredibly poor vision and muscle coordination—that he might be capable of some sign language, something I never really thought he could master. Sign language is for deaf people, not legally blind people, I'd think. But his aides at school work hard at teaching him to sign for "more." He claps his hands together, which is close to that sign, though Calvin does plenty of banging and clapping that is hard to account for.

A few weeks ago Calvin was sent home from school with his usual daily progress report that logs his food and water intake, the time, size and consistency of his bowel movements and a list of activities he's done throughout the day. This way I can keep up with his gastrointestinal motility and appetite and make adjustments to his diet if I need to. At the bottom of the paper his aide wrote, Calvin signed for 'hug.' I was surprised and, to be honest, quite dubious.

But not long after, Michael and I saw it for ourselves when I was sitting across from Calvin feeding him a meal. He didn't use both hands like in the formal sign, rather put his left arm on his right forearm as he'd been taught at school. We had no doubt ... he was signing—asking—in true Calvin form, for a hug. I'm not surprised at all that hug is his first word since saying mama. He's just that kind of kid.


friday faves - little chemical gems

Innocuous looking epilepsy drugs
Chalky white ones impersonating
albino Junior Mints
Round or squarish and
emerald-cut with neat beveled corners
Wafer thin discs that
melt in your mouth
melt your brain

Merry little multicolored two-toned
gel-caps like sick and twisted
Hot Tamales, Mike and Ikes or Good & Plenty
Split them open like Pixy Stix
Close your eyes and
sprinkle the sugar-white granules
dissolve them on your kid's tongue
They’ll send him into oblivion
Blushing pastel colored oval lozenges
cut in half reveal
bright white centers like a
perfect coconut cream
Cherry-flavored liquids
tint water pink as punch
White powders swirl jubilantly in a cup like a
crystal snowball toy

These little chemical gems
some all sickeningly wrapped up in darling
shiny foil polka dot pouches
that are oh-so-fun to burst
I’m waiting for the ones with the
candy coating and the chewy center
No doubt they're in the works
I hate tho think we will have to try them
on Calvin

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

photo by Michael Kolster


back to the therapist

Today, after a three-year hiatus, I am heading back to my therapist. I first began seeing her just after Calvin turned two and had been diagnosed with epilepsy. His premature birth, the knowledge that his brain was missing a significant amount of its white matter, his infinite missed milestones, his relative blindness, his inability to walk and to speak had all been eclipsed—practically overnight—by his seizure disorder, by epilepsy.

Some people talk about acceptance, about how terrible things become bearable if one can simply resign themselves to the simple fact that things are what they are. But part of me doesn’t want to accept what life has thrown at me, doesn’t want to forget or sweep under the carpet or act like everything is fine and dandy and normal ... because it isn’t and it never will be. Instead, I feel the need to consciously not accept my son’s condition as static in order to fuel my search for a cure, to fuel my relentless advocacy, to fuel my hope because without hope what is there?

But this constant struggle—Calvin’s continued seizures, the endless administration of powerful chemicals into his little body that wash over his brain then seep out into his flaccid, uncoordinated limbs, his dizzy eyes, his manic mood, his lack of progress with skills as elementary as eating with a spoon—punches me in the face daily. The stuff brings me to my knees, sometimes suffocatingly so, and who can begin to know what it does to him?

So, these dark days lead me back to a place where a soft-spoken, middle-aged woman, who knows the weight I’ve carried as well as anyone can who hasn’t done it themselves, will sit across from me in a cozy chair and will validate my sorrows, validate my anger, validate my frustrations and in doing so perhaps lighten my load like she did before, if only just a little.

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

photo by Michael Kolster


knowledge and wisdom

Knowledge is learning something every day.
Wisdom is letting go of something every day.

—Zen proverb 

photo by Michael Kolster


calvin and will

If Calvin could have a friend his name would be Will. Calvin and Will—kindred spirits and friends forever. They’d help each other—Calvin, hanging off of Will’s wheelchair handles to steady his balance and push while Will enjoyed the ride, spinning, turning and coasting down gentle hills.

Will would sweetly help Calvin push the big red button meaning “no” and the yellow button with its smiley face for “yes”.

The two, like peas in a pod, would giggle and smile simply because the other was giggling and smiling, and they’d hold hands.

Calvin would give Will his favorite toys, the orange plastic football or his plush blue velour star, its clear bubble center rattling with tiny colorful beads. Will would let Calvin wear his cool orange glasses.

They'd splash in the tub together, two tender bodies soaking up the warm water, buoyant and bouncing and frolicking in the waves.

At nap time they’d lay down their heads, sharing a pillow, covered by a soft, heavy blanket. They’d fall asleep in an embrace of love and friendship, their thumbs stuck in their sweet mouths, so peaceful in their slumber.

When one was feeling bad the other would stay nearby to comfort and console and to help wish the pain away.

And when Will would die, Calvin would miss him terribly, his only friend. But he’d remember him forever, his gentle spirit, his loving hugs, his wonderful smile. Will and Calvin. Calvin and Will.

Originally published 3.2.11.

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

William Tyler Day June 2004 - April 2009


deep lake

I grew up as a tomboy stabbing slugs with sticks and tossing them into the street to be squashed by oncoming cars. I had almost nothing to do with dolls. You can ask my friend Monica, who I encouraged to forsake them. I climbed sappy trees in worn out, boy, hand-me-down jeans, t-shirts and sneakers. I liked playing basketball, albeit not very well, and baseball (though not much better) and my dad taught me to spiral toss a football. I ran fast and hid where no one could find me. I pulled the limbs off of daddy long legs until just a bead of a body remained rolling around on the cement tiles of our patio. And I loved mud, especially if there were polliwogs and frogs in it for me to catch.

Every summer our family took at least one vacation. More often than not we drove east from our Seattle suburb hauling our twenty-one foot trailer over the Cascade Mountains to the desertous part of the state. It’s beautiful there, but in a very different kind of way than the coast. In the dry climate jagged cliffs spring up from rivers that have cut zigzags through the bluffs. High plateaus stretch for miles, rattlesnakes lurk in crevasses and banner skies gleam so spotless and blue you practically go blind gazing into their infinity.

The bunch of us kids—my older sister and brothers and a handful of friends—spent the hot dry days up at Deep Lake jumping off of cliffs. Wearing only our swimsuits and sneakers without socks we trudged up snaking dirt paths, sometimes nicking our ankles on rocks and scraping our calves and thighs against brush and brambles. At different heights above the lake jutted several jump-off points—flatish ledges overhanging the water just far enough for a body to avoid hitting the cliff wall on the way down. The lowest shelf was at about twenty feet. The highest we figured was fifty to seventy-five feet above the water. My crazy brother Matt took that one.

My girlfriends and I always chose the lower platforms. Just eleven years old, or so, we were novices. We perched ourselves up there like vultures or gargoyles hugging our knees for what seemed like a part of forever, twinges of vertigo prickling our nerves. The lake mirrored the sky and nestled itself in a canyon of sorts, steep ridges rising nearly vertical above its surface. Our voices echoed back to us satisfyingly when we whistled and called.

I’d wait for my brothers and sister to jump first from their thirty-five foot outposts. From a standing start the boys kicked out their legs as if running in air, dislodging pebbles and dirt as they did, then cupped their hands over their groins for the stinging slap into the water. After they jumped I peered down at the floret of foamy bubbles boiling at the surface around their entry point. My brothers swam to the surface and whipped their longish hair back from their faces the way boys did in the seventies, perhaps still do today. Eventually, the entire group having already jumped and waiting in the water or in the inflatable canoe below, it was my turn. I stood with great apprehension at twice the height of the highest board I’d ever dived off of.

It pretty much scared me shitless, though I felt confident I’d meet my objective. Adrenaline surged through my veins as my friend encouraged me from behind, “C’mon, Christy, you can do it!” Then, there was a split-second break in the tension, perhaps from a passing bird or a brief let-up in the wind, and I jumped. As if riding a roller coaster my stomach leapt into my throat as the water, which had seemed so very far away just seconds ago, sped toward me. I shut my eyes tightly and—SMACK—hit the surface as if it were solid mass. But the water gave way and my little body plunged deep into the lake. Once I opened my eyes I could see the muscular, sneaker-shod legs of the others egg-beatering against greenish water. I felt as if I were inside of a mossy fishbowl. Tiny bubbles hugged my forearms like barnacles or pearls and larger ones traveled up my body then floated to the surface. Down there it was eerily serene, save for the muffled sound of voices and the glug of splashing water. Ten feet under I hung suspended, engulfed in a murky limbo; I felt safe, as if no one could touch me. I kind of wanted to stay down there forever and explore the womb of the lake, to sway in what felt tepid at my fingertips and cold at my toes. But alas, my lungs began to burn, so I popped to the surface where my siblings and friends were cheering.

At times, Since Calvin’s birth, I find myself in thick despair almost with that same sense of pre-jump vertigo but from fear and worry of his next seizure, his next bad fall. Exhaustion tugs my limbs and I want to surrender to its gravity. Sometimes, to cope, I retreat to a place where I can hug my knees to my chest and let myself go numb. At times it’s in bed under the safety of covers, others it’s in some mossy garden nook and still others it’s in the pool taking stroke after stroke in a meditative daze where sights and sounds and emotions become blurred, foggy, murky, like the comfort of that lake.

But eventually I come up to breathe, knowing I can go back to that dark place if I need to, knowing I can hang suspended in a murky fog where no one can touch me. But now I don't do it for the thrill, I do it just so that I can survive.

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Deep Lake, photo by pammybay


beautiful universe

Every night, when I was a kid, as the eight of us sat around the dinner table, my father said grace. I had no idea what he was saying—the words tumbling over each other as they came out of his mouth—but I was able to memorize the verse simply by mimicking his syllables. 

Other than reciting grace, my dad never said one word about God. Beyond the daily grind of his job, my dad’s focus was on his children and on getting out in the fresh air as much as possible. He praised nature and was a sun worshiper of sorts, occasionally bathing in it, but mostly just soaking up its warm rays as he worked hours outside in the yard.

I helped my dad tend a garden that boasted plentiful, succulent vegetables and fruits: berries, squash, greens, root vegetables, rhubarb, Swiss chard—you name it. He loved being outside and working with the earth, planting seeds, pruning the ample fruit trees, harvesting their yield and fostering rhododendron and camellia buds. He liked bees and taught me not to be afraid of them. He'd spy garter snakes peeking out from crevices in the rock wall and, knowing I liked them, he'd catch them and place them, gracefully writhing, in my small hands. He shared his love of birds with me—which was palpable—though not so much in words but by his pleasure in seeing the abundant robins, quail, hummingbirds and the occasional pheasant. And gazing up at the clouds we stretched our sore backs after hours together in the garden, taking in clean deep breaths then releasing; I felt close to him and to the universe.

My dad lives on in me through my love of gardening, of nature, of our beautiful, expansive, complex universe. But I wish he had stuck around long enough to meet Calvin.

I imagine them together in a dream, lying side by side on a big colorful towel in the middle of a meadow watching the clouds meander by. As butterflies dart and bounce amidst sunlit drifts of bees and pollen, my dad shows Calvin how to make a blade of grass sing between his thumbs. Grandpa and Grandson, two peas in a pod, giggling with delight.

On this father's day, I think, if only it could be true.

Originally published 11.28.10.

me and my dad, circa 1965


on the phone with mom

I Just got off of the phone with my mom. She's all the way out in San Diego—about as far as you can get from here and still be in the continental US—living with my brother Matt and his wife Stacey.

Our chats are short but frequent. She asks me what I'm up to and then I ask her the same and we go around and around like that for ten or fifteen minutes. Our conversation is peppered with laughter and comments from her like, "you betcha," and "that sounds like a good idea," and "I think you're probably correct," and lots of, "ditto." I realized today that from Mom's perspective language must be like learning a new one in that it appears a lot easier for her to understand than to speak.

Mom usually starts by asking where I am living and I tell her in Maine and she wonders when I'll be coming to visit. She can't travel by herself anymore because of the Alzheimer's and Calvin hasn't traveled to the west coast since before he was two because of the epilepsy. So she hasn't seen him since the last time she came out here nearly six years ago. I let her know that I'm hoping to visit in the fall, perhaps for her eighty-third birthday. "Ooooh, that would be terrific," she says with a smile in her voice.

Before hanging up we exchange copious I love yous and then I tell her to punch Matt for me. "He's not here right now, but I will when I see him." We laugh, say I love yous again and I hang up the phone with a satisfied feeling, the kind one gets after talking to the best mom in the world. Too bad Calvin won't know her, I think.

But come to think of it, he'll know her through me. I think I take after her and that makes me, and Calvin, pretty damn lucky in most every way.

Matt, Mom and me in Maine, 2005


friday faves - missing pieces

When you have a disabled child (especially one with intractable epilepsy who has to take tons of powerful drugs) every day—perhaps many, many times a day—you notice something that should be there isn’t. Like the conundrum of the missing sock that never turns up. But of course, it’s not at all like a missing sock.

Sometimes it’s subtle, like noticing that your dog understands simple questions and commands, but your eight-year-old doesn’t—or does but can’t comply—because something’s missing.

Perhaps during a visit to the Frosty Freeze you realize that you, your husband and even your dog can enjoy a delicious scoop of ice cream but that your son can't. It's because he is either on some crazy diet for epilepsy that no one else in their right mind would willingly try except diet-fanatic adults or because he doesn't know how to lick the cone or because you're afraid of what spikes in blood sugar level will do to trigger seizures.

Or, a simple stroll down the block headed to the playground becomes a major struggle just to get your child to walk hand in hand with you—and straight—while persuading him not to sit down in the middle of the sidewalk every few steps. You only get past two houses on the block before you must abort the mission.

Often you hear kids passing by chattering with their parents about their friends or the weather or the new scooter they want to get and it reminds you of how you have absolutely no idea what goes on in your own kid’s head—ever.

And when you see your child’s development slow like molasses you understand that what is missing is a significant and important part of their brain. Somehow it just went missing, or perhaps it was never there in the first place. No one knows.

But then there are times when everything comes into focus (except the damn camera) when your sweet goofy little kid, like no other kid in the world by a long shot, looks you right in the eyes—something he rarely does—leans into you with outstretched arms from the other side of the high chair tray and pulls you in close, kneads the skin at the nape of your neck with little fingers, giggles and smiles and won't let go. That’s when it feels like there is nothing missing at all.

Version originally published 5.23.11

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


dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the taste of your first sip of wine. the warmth of your lover's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the sound of bees—even the memory of them. the color of the sky at dawn. at noon. at dusk. at night. the happy wrinkles in the corners of smiling eyes. the long embrace of an old friend. the light massage of shower water on your back. the smoothness of soap. the buzz of a crowd. linger on these little things and let them move you. they can be a joy in and of themselves. let the other big stuff take a sort of back seat. and know i will be strong for you, as you have been for me. because i can.

Imagine your face here.



   To laugh often and love much;
To win the respect of intelligent persons
and the affection of children;
To earn the appreciation of honest critics
and endure the betrayal of false friends;
To appreciate beauty;
To find the best in others;
To give of one’s self;
To leave the world a bit better,
whether by a healthy child,
a garden patch or a redeemed social condition;
To have played and laughed with enthusiasm
and sung with exultation;
To know even one life has breathed easier
because you have lived.
This is to have succeeded.

—Bessie Anderson Stanley


we got it good

At the close of the nightly PBS news hour they often air an ongoing honor role of troops killed in the Afghanistan conflict. A photograph of each fallen soldier is accompanied by name, rank, age and hometown. Saddened, this always gives me great pause to know that they’ve been lost to someone.

Similarly, I am frequently struck by hearing the news of tragedy that befalls so many innocents in the world: victims of Katrina, of the earthquake and displacement and epidemic in Haiti, of the floods in Pakistan, of the tsunami in Indonesia, of the earthquake and tsunami in Japan, of the famine, genocide, disease, neglect, war, exploitation, wrongful imprisonment and poverty of millions of our fellow mankind.

Sometimes, especially of late, I sink into despair when I reflect very deeply about our own situation with Calvin. I consider the thumping he takes from his uncontrolled seizures. I think of the debilitating side effects he suffers from the drugs he has to take. I ponder his compromised and uncertain cognitive abilities, his visual and physical deficits and the limits, therefore, placed on him. Daily, I am reminded of—and I mourn—the loss of his ability to make true friends and to do the things that his peers can do. For my loss of the promise of what parenthood could be, and on behalf of my family, I grieve.

But then I turn my thoughts to the unfortunate, to those who have only the shirt on their back and who have lost their home, their parents, their children or their entire family. I consider the millions who have no running water, no heat, no clothes, no doctors, no schools, no human rights, no job, no food, no security, and I am deeply humbled.

Calvin, on the other hand is—and for that matter many of us are—warm and dry and fed and clothed. We benefit from outstanding medical and educational services. We have an ample, comfortable home, and clean hot water on demand. We can buy what we need—or simply desire—from the store or the Internet at any given moment. We have recreation, we have leisure, we have community. We are free. Most importantly for us we can provide for Calvin and he is loved beyond measure.

I must practice taking nothing for granted in this life. I must show great compassion and understanding to others. I must share what I have with those in need. I must be mindful of how fortunate we are. I must remember that we got it good.

Version originally published 11.13.10.

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

The Irish Famine by George Frederick Watts


edward scissorhands

My niece Madison was in town for a long weekend visiting from Arizona. We had two days of glorious sunshine and two days of total deluge, which made for a variety of adventures such as kick-boating down the Androscoggin river fishing for smallmouth bass, lunching harborside on fried haddock sandwiches and lobster rolls, watching movies and eating plenty of ice cream.

One night, after Michael put Calvin to bed, we projected Edward Scissorhands on a sheet pinned up in front of the French doors. The film had barely started when my eyes began to sting watching Edward, played by Johnny Depp, living alone in a dark mansion on the hill. The mild boy had been orphaned after the sudden death of his loving father-inventor, played by Vincent Price, who died before he could give his boy hands, before he could make his boy whole. Instead, Edward lives his life with scissor-hands, which he uses to carve shrubs and towering blocks of ice into beautiful sculptures. Regrettably, though, his scissor-hands inadvertently cause harm, sometimes nicking his own face or slicing the flesh of others who Edward is simply trying to help. Like Calvin, Edward is kind and loving, though Edward is not well understood, Edward is disabled and Edward is alone.

The film made me think about Calvin and his various disabilities, about how alone he is with no real friends, no one to truly understand him, including me. I thought about how his disabilities sometimes cause him pain, like when he has seizures or when he falls or bumps into things because of his poor vision and balance. I also thought about how he unintentionally hurts others by pulling hair and butting heads, flailing fists and kicking feet. Perhaps he’s just trying to tell us that something is wrong, but we can’t understand, thus we often don’t know how to help him.

In one of the film’s scenes Edward appears on a daytime talk show in front of an audience of frosted-haired, pastel-clad women. The host takes questions for Edward using a microphone. Upon hearing that Edward is interested in meeting a doctor who can help him with surgery or prosthetics, one woman stands up and says, “But if you had regular hands you'd be like everyone else.” She goes on to say, “Then no one would think you're special.”

The line stabbed me as I thought about poor Calvin who, like Edward, can’t eat with a knife and fork, can’t dress himself, can’t hold hands or embrace a sweetheart, can’t make himself understood. And though Calvin does not have scissor-hands, it appears that many people find him difficult to engage with and most don't even try. I'd give anything for Calvin not to be special, not to be disabled.

Because once Calvin steps off of that bus he is alone. Calvin's aloneness is in great part due to his disability, his inability—our inability—to easily engage in activities and functions without disastrous failure, the risk of physical injury or deep psychological bruising. And so, oft times we find ourselves sequestered to our own little refuge—no dark mansion on the hill—just a two-story cedar shingle house with a red roof. And, like Edward, I spend my time out back in the garden where—unlike with Calvin’s disabilities—I can control life with something as simple as a pair of shears, sculpting dreams of my own and hoping that somehow—some day—I can make my special son whole before I die.


the three of us in one bed

five a.m.
the three of us in one bed
happy shrieks
sleepy coos
little snores
then at breakfast
hardly ate a thing
gurgling bowels and
grinding teeth
runny nose

napping in the car
glassy eyes half open
as if in some
catatonic state
this is what he
does when he is sick ...
or worse.

at home
manic giggles
staring straight at the sun
any chance he can get
stubborn legs refuse
to walk
pulling my hair
trying to tell me
something is wrong?
i just figure it’s
the drugs
wandering up the street
i call to a neighbor
he’s never done this before
i struggle to keep
him upright

daddy comes home
i’m in the back field
with calvin
walking on moss
the sun at our backs
daddy brings me a
glass of wine
he has a cold beer
it’s saturday evening
the meadow is golden
spongy under our feet
calvin rolls in the grass
seems happy enough in this
idyllic moment

calvin sits in his chair
slumped and sallow
patchy cheeks
this is the seizure
here it is, i say
i unlatch him, unbuckle him
carry his stiffening body
to the couch
like i have done
hundreds of times before
his lips turn blue
not a breath passes over them
i stroke and kiss
his sweet pale face
and hold his
little trembling hand in mine

three minutes later
it’s nearly over
he cries and i cry
a pained expression on his face
and i still have to
get his seizure meds in
he opens his mouth
to take them in
all six of them
sunk into yogurt
still crying still in pain
i cradle him
and take him upstairs
new diaper
more medicine
for his raging headache
still crying
rubbing his head
michael bundles him up
kisses his face
six-thirty p.m.
the three of us in one bed

Please, please, please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster


sometimes so little joy

Sometimes there is so little joy in raising a child like Calvin whose seizures persist, whose development is so slow it almost feels as if it is going backwards (indeed in some ways it is) whose anticonvulsant drug side effects ruin any semblance of balance, coordination, appetite and attention that he otherwise might have, and whose days and nights are carbon copies of each other—hours of monotony on top of mind-bogglingly repetitive behaviors spiked at times with manic shrieks, grinding teeth and hugs I can barely enjoy because he yanks my hair so hard.

This morning I woke to a Facebook friend's post of an old photo of her with her vibrant, bouncing baby boy who is now two years old, can no longer see, is paralyzed, has seizures and is dying from Tay-Sach's disease. Along with the photograph she wrote this caption:

Little guy in earlier days. Missing him, then and now.

The words brought tears to my eyes. Though Calvin's death does not appear imminent, I have some sliver of understanding in wondering what Calvin might have been like now if it weren't for his epilepsy, if it weren't for the drugs.

"Hold fast," I told her, "Hold fast to your boy then and now," and of course I know that she is. It's what we do.


friday faves - misfits

I’ve always been drawn to that which is “other," perhaps because I feel a bit of the misfit myself.

I’ve got a soft spot—an attraction— for the Charlie Brown Christmas tree, the misshapen cookie, the mangled potato chip, the scrawny baby bird that fell out of its nest, the three-legged shelter dog.

When it comes to my fellow humans I want to know the wallflower, the genius, the underdog, the social deviant, the nerd, the black sheep of the family, the gypsy, the kid with the Coke bottle glasses, the hermit, the brother from another planet, the chick with tattoos and piercings, the immigrant, the guy with the magenta mohawk. Besides being drawn I figure if I can rub elbows with these wonderfully curious—yet in some ways familiar—bodies I can glean something, tease out some new facet of myself that I didn’t know existed, improve on myself or perhaps add a soft layer of humanity that was missing from my heart. Let me intimately know "other" and I am happy.

And maybe, just maybe, I can do the same in return—nurture them, love them, understand them, lift them up, befriend them, embrace them, make them laugh.

So it's no surprise that Michael is my husband. And I suppose in some weird and wonderful way, by some random artistry, it makes sense that Calvin is my son, my little misfit. I don’t mean to say I was chosen to be his mother or that it was some grand design or plan that he became my son. Just that it works. By some crazy serendipity, it works.

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

Originally published 4.6.11.

My husband Michael, not quite looking himself playing the nerdy professor


dark strangers

Written by Julianna

Recently, I took the Greyhound bus down to the National Walk for Epilepsy in Washington, D.C. with a friend who also had epilepsy surgery last Spring. The walk was powerful—5,000 people marched wearing matching white and purple shirts. People in white were supporters and those in purple were people with epilepsy. So, my friend and I made it our mission to meet as many purple-shirted people as we could throughout the day. We approached a family that included a confident-looking seven-year-old, who was leading their caravan, and two parents hauling a three-year-old and a five-year-old in a double stroller. The three-year-old was staring into the distance. He was decked out in a purple shirt but probably had no semblance of what it all meant.

As we had been doing throughout the day, my friend and I approached the mother, introduced ourselves and asked about her son’s story. She explained that he had a severe epilepsy syndrome characterized by mixed seizure types and that the seizures had been so debilitating that he was left completely unable to speak. She asked about my story and I told her that I had had refractory epilepsy since I was born—I have had more than 1,000 complex partial seizures in my relatively short lifetime. Then her gaze intensified. Her son William also had complex partial seizures. She asked if I would tell her how it felt to have a complex partial seizure because William would never be able to tell her. This notion made me immediately tear up. This is what I explained:

My seizures feel like an assault. They come quickly and unexpectedly. I feel the same sinking feeling in my chest that you feel on a roller coaster, but intensified. Everything is intensified during a seizure. Then I don’t feel like myself—literally—I feel like a different human. This may be the scariest phase of all because we attach so completely to our self-perception; it seems unfailing, unwavering and constant until a seizure hits. My vision goes white and I start to hallucinate. People are chasing me, usually a massive and dark figure approaching from the left. Running away in my mind feels exponentially scarier than anything I have experienced in my conscious life. And so I clench my fists, thinking “get me out, get me out, get me out.” For some reason, these basic instincts can override my otherwise unconscious and flailing mind. More adrenaline rushes through my body than anything that I have experienced otherwise. Although my seizures are only ten to thirty seconds, time extends during seizures; they seem to last forever. And then finally, with the most relief I ever feel, the seizure ends and my heart is left beating furiously.

The tragedy is two-fold. For me, like one-third of the people with epilepsy, medications and dietary therapy did not work to cure my seizures and I was left to be accosted by massive, dark strangers six to seven times a month. But the most tragic element of epilepsy is how it leaves people—kids like William—so vulnerable, so fragile and so helpless. Epilepsy is often an overlooked disorder largely because the public does not know its harm. I hope that this blog has illuminated the harm that it can do. Spread the word and help find a cure.

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

from the graphic novel Epileptic by David B.


voice of the epilepsies (video)

View this short trailer for an upcoming documentary film about people living with epilepsy, featuring—among others—our boy Calvin. To find out more about the film go to: http://www.epilepsymovie.com


trouble on the bus

Outside, while waiting for the bus to arrive I followed Calvin around as he banged and patted the car—one of his favorite things to do. When I heard it pull up to the curb I grabbed his lunchbox and swiveled him around toward the bus. Calvin's driver, Cindie, startled me having leapt out of the idling bus to coax us along, something she never has done. “Hurry,” she said then explained, “One of my kids isn’t doing very well and we have to get him to school fast.” With a certain amount of understanding I picked up Calvin and quickly shuttled him to the top of the bus’ stairs, passed him off to an aide and told him, as I do every day, “Bye Calvin, I love you.”

As the coach pulled away I peered up into each window trying hard to discern the trouble through the glare on the glass. Several seats back sat a boy a boy a year or so older than Calvin, a boy who was his classmate in preschool and kindergarten. This boy, amongst several other children in Calvin’s class, also has epilepsy, has a history of being hospitalized for bad seizures just like Calvin, but I couldn’t be sure if he was the child in distress. The bus sailed away and as I trudged up our driveway I began to cry. Michael intercepted me with an embrace. We were feeling the same emotion ... despair for the anonymous, unwell child on the special needs bus.

Back in the kitchen I halfheartedly poured myself a bowl of cereal and milk. Our visiting teenage niece, Maddie, wandered into the room, saw my tears and asked, “Why are you so sad?” I looked over at Michael whose eyes were red and moist and I began to cry some more. Through my weeping I told her about the incident on the bus. “It’s just that these kids are so innocent. They don’t deserve or understand what is happening to them. They just feel bad and they can’t even tell us why.”

We all stood quietly in the kitchen lamenting the reality that Calvin shares with his classmates, hoping the ill child would be okay and thankful for the childrens' amazing bus driver. I finished my cereal in silence listening to the miserably hollow din of my spoon against the empty bowl and thinking of the heartache I feel on a regular basis mostly because of epilepsy.

Please share and bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com


fetal mri

Calvin’s first MRI was in utero. We were about thirty-three weeks along.

Michael and I had learned the previous week, from an insensitive witch (doctor), that the lateral ventricles in our baby’s brain were enlarged. We ignored the docs advice to come back in two weeks by opting never to see her again. By good fortune, we came across a study of the diagnosed condition—ventriculomegaly—underway at a Boston hospital.

The events in the hospital were a blur, shuffling between obstetricians, neonatologists, neurologists and radiologists while running blood tests, genetic screenings, and sonograms on me. Near the end of the day, exhausted and fraught with worry, the only test left was a fetal MRI. Michael and I sat holding hands on teal fabric chairs amongst fake plants, and painfully awaited our turn. I felt alone and frightened, trying to hold back my tears of trepidation. I knew Michael felt the same.

Finally, I was lead to a changing-room to disrobe for the procedure. The stark space had bare plywood walls, a single hook on which to hang clothes and a cheap mirror fastened slightly askew on the back of the door. Against one wall were stacks of clean folded “johnnies.” I stripped down, shivering, not so much from cold as from fear and fatigue. Standing naked in front of the mirror I regarded my taut round belly and wondered how and when it all went so wrong. I was so afraid—afraid of what I knew about my precious child’s brain, and afraid of the unknown. Slumped in sorrow, my dirty hair hanging in strings before my face, I feebly chose a pale printed johnny. Surprised and dispirited by it’s weightlessness, I found each gaping one-size-fits-all armhole and positioned the opening in front as I had been advised. The flimsy gown could have wrapped around me nearly twice if not for Calvin. For a moment I stood trembling beneath the thin garment, which fell at my shins revealing shoeless feet. I had never felt so vulnerable in all my life, and in the mirror’s reflection I watched my screwed-up face start to sob uncontrollably.

Michael appeared and I gave him my wedding band—metal cannot be worn inside the powerful magnet. He escorted me to the imaging room, kissed me and returned to the waiting area. The technician laid me down on the conveyor and strapped me in good, feet first, on my back. With a push of a button I was slowly inserted into the massive, white hollow tube. It was a much narrower opening than I had imagined and I felt as if my pregnant belly might graze the cylinder as I passed through. The technician exited the room and left me alone, except for Calvin. A voice spoke to me over an intercom from the darkened side of a large window giving me instructions as to when to hold my breath for the making of the images. Deep, guttural sounds and jolting buzzes, like no other sounds I had heard before, bellowed from the machine's bowels. The noises were freakish, futuristic and jarring, contributing to the whole surreal experience. But somehow, knowing that Calvin was with me—inside me—and we were going through it together, gave me a sense of calm. I kept telling him that everything was going to be okay and not to be afraid and he seemed to be doing the same for me.

After an hour or so I emerged from the white monstrosity that had swallowed me whole. Now all we had to do—which was no easy job—was to wait for the results and find out what needed to happen next. We had no idea of the nightmares that were in store for us and for our unborn child, nor of the worst that was to come: epilepsy.

Please share and bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com