finding purpose

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

—Anne Frank

One thing I am not is a fatalist, though people from all walks of life, for whatever reason, often assume that I am. It might be the cashier at the grocer, the man I pass walking his dog on the fields, or perhaps it’s another mother I meet in a coffee shop or a new friend, and often mere strangers tell me, upon hearing about or seeing Calvin’s struggles, that “things happen for a reason,” or “God doesn’t give us anything we can’t handle,” to which I reply kindly, “What about the poor folks who take their own lives because of situations they couldn’t handle?”

I remember watching the film Rabbit Hole with Nicole Kidman. She plays Becca, a woman whose only child, a four-year-old son, runs out into the street in front of his home and gets hit by a car and dies. She and her husband decide to go to counseling with a group of parents who have also lost their children, some to cancer, some to disease, some by accident. One of the mothers speaks sullenly about her daughter, dark grieving circles under her downcast eyes, and says, with little conviction, “God had to take her. He needed another angel.” Becca replies strong and incredulously, “Why didn’t he just make one? Another angel. I mean, He’s God after all.”

Any time well-meaning folks tell me that things happen for a reason I think of this scene and my mind rolls over images of my friend Emily’s toddler Ronan who is dying of Tay-Sachs, of my friend Christy’s son Will who suffered a lot in life and died when he was only four, of my friend Lidia whose beautiful daughter was stillborn, of my friend’s son Leland who, at only twelve days old, got meningitis from a mosquito bite and ever since has suffered up to forty dangerous atonic and tonic-clonic seizures every day and must be drugged, like Calvin, to try to keep them at bay, albeit unsuccessfully. No one can tell me there is reason behind these maladies. No one.

Though I’m not a fatalist, one thing is certain, I am an eternal optimist. I know that, if I am strong, I can decide how to handle the tragedies that inevitably happen in life, so I choose to see beauty and opportunity in that which has caused me much grief and hardship. Calvin, whose health has been seriously compromised by seizures and drugs, has shown me to live life day by day, to immerse myself in the moment and to savor it gracefully, to love unconditionally. The strains that having a child with epilepsy has put on our family has only made us a stronger more cohesive unit, a force of love to be reckoned with. The people I have met along the way—the doctors, the mothers, the nurses, the children, the teachers, the therapists, the writers—have enriched my life in a way impossible to describe. The support I’ve received from old friends, former coaches and teachers, former acquaintances who’ve become friends, from new friends and from family is astounding, humbling, brings me to tears and lifts me up all at the same time. My life is full and rich beyond measure, which makes up, in part, for the gross limitations that having a disabled child with intractable epilepsy places on my dreams, my desires, my psyche.

So no, in my world things do not happen for a reason but rather I choose to find purpose in the stuff of life, and I am forever thankful for the people who have helped me to find it. Many of you, my readers, help me through the darkest, hardest of days when you reach out to me with a kind word, or when you share Calvin’s story. You let me know that I am not alone. Without you so much wouldn’t be possible. You make the world a better place for Calvin and me to live. What more profound purpose could any of us find in life but to do that for someone else? Thank you and keep up the good works. What goes around comes around.

In honor of the last day of epilepsy awareness month, please share this story. Help bring us one step closer to a cure.

photo by Michael Kolster


breakfast of champions

We cruise seventy miles an hour down I-95 rocketing to Boston having left just before seven o’clock. I got Calvin to take the first part of his breakfast before we all loaded into the car—that being one-half lavender Levoxyl pill for hypothyroidism, followed by three anticonvulsants, including one-and-a-half white Clobazam pills, two powder blue Keppra tablets, three smoky salmon-colored Banzel tablets, then one large, chalky Carnitor for metabolizing long-chain fatty acids and one-half of a large bubblegum pink coated Amoxicillin pill for his ear infection. All of these I sink into Calvin’s yogurt, which he chases with a pink mixture of potassium citrate and Miralax dissolved in water. The breakfast of champions, I bitterly say to myself.

I finish feeding him a few bites in the car, take a swig of hot coffee from the thermos, munch on my toasted bagel and begin to write. I catch up on long-overdue email replies, edit and re-edit several blog posts while Calvin sits next to me fondling my face with his soft fingers, trying to stick them into my mouth, grabbing my nose, stroking the hair at the nape of my neck like we both enjoy so much.

Two and a half hours later, at the neurologist, two women in white lab coats busy around Calvin snapping latex gloves onto their hands, preparing seven slender clear vials with colored plastic caps, securing labels with his name and date of birth onto each tube. One technician stretches rubber strapping around Calvin’s exposed arm and ties it off, pinching his skin a little. Then she sticks him with the fine butterfly needle and blood flows looping through the thin plastic tube into each vial. Calvin sits sedated in Michael’s lap as the thick red pours out of his vein.

He’s sick with a virus and extra drugged-up having lost so much weight since the initiation of his third anticonvulsant drug. “The medications are hitting him harder at this lower weight,” the neurologist says, confirming the painful truth. We discuss his recent sleeplessness—and mine. “He awoke at 1:45 this morning and never went back to sleep,” I told them, “rubbing his head and kind of moaning the entire time even though I gave him a Tylenol.” He’s been like this for weeks on end—headachey, not sleeping, no appetite. He’s taking enough of these mind-numbing chemicals into his little body to bring Muhammad Ali—in his prime—to his knees in drunken, drugged oblivion. We could all see the weariness in Calvin’s face, his sad expression, droopy, sunken eyes, the dark circles that have formed under them. It’s the same look I’ve seen on other kids with epilepsy. Sickly. Anemic. Half awake.

While writing this now Calvin hangs out in his johnny-jump-up rubbing his head into his palms until his hair dreads then breaks off. He can’t stop poking his eyes; must bring him some kind of relief from a dull pounding behind them. He seems to be eating less each day and I hope he doesn’t become anorexic, though that’s listed as one of Keppra’s side effects, the loss of appetite one of Banzel’s.

Besides the fact that it is clear Calvin feels like hell, there is no doubt in my mind that he would be walking completely by himself if it weren’t for the drugs. I can remember years ago we were sure he’d be walking all over the place, without our spotting, by his third birthday. Never happened. He’d be doing a lot of things now that he isn’t doing because of the drugs—and the seizures of course. No way around it but a cure that seems to be as elusive as words coming out of my boy’s confused, drooling, uncoordinated, drugged-up mouth that I have to stuff with pills again and again—perhaps for the rest of his innocent little suffering life.

I think of all the prayers people are saying for Calvin and wish, instead, they’d share Calvin’s story and help me tell the world that we need a cure. If only they knew how their voice could carry on the wind, could spark a movement, incite change. Until we have a cure Calvin will have to keep eating the nasty breakfast of champions, though a little champion he most definitely is.

In honor of epilepsy awareness month please share Calvin's story with others. Awareness is the first step toward finding a cure. Please find it in your heart to help.



I wish I’d had a conversation about the universe with my dad, but that wasn’t the kind of relationship we had. Our connection was rooted in the physical, in the doing not in the saying. My dad had that same kind of link with the natural world—didn’t much talk about the beauty in things, didn’t call out the colors of a fiery sunset or the way the dew sparkled on a downy rhododendron bud, though I know he enjoyed these things. Instead, he’d gaze out at the world with a look not unlike a smile simply soaking up the moment.

Ours was a relationship of few words. My dad revealed the majesty of a thing—a moment—but not by underscoring its mystery with vocabulary. Instead, he showed beauty to me in simple things like choosing the perfect green sapling to whittle into a spear and the art of sculpting a lump of sticky dough around its end and how to roast it over an open flame to a perfect golden crisp. He showed me charm in the melting of a cold pat of butter into its baked center watching it pool, steam rising from its moist center. And together we'd enjoy the splendor of its flavor, as much from its aroma and texture as from anything, with a simple, smiling "mmmmmmm." Then we’d huddle together, the campfire warming our faces, close, hot denim singeing our knees, perhaps charring a sneaker toe in the flames. We'd poke sticks into the embers coaxing sparks that, like fireflies, spiraled into the blackness before disappearing. The cold night hugged us tightly, as if we were a glowing capsule in the center of space—of the universe—which of course we were, and I'd sit there hoping that moment under my dad's heavy arm would last forever.

As for the cosmos, I used to wonder if my dad was a man of faith, if he ever prayed. I know my mom did, though she was often cursing God for making life so hard on her, what with six kids and all, curious why He never seemed to answer her prayers. My dad, on the other hand, didn't utter a word about God. But still, I wonder if he prayed—perhaps reflexively—for things like a boost in the modest salary he brought home to his growing family. I wonder if he prayed to stop having kids (he and my mom used the rhythm method—most unsuccessfully—as birth control.) I wonder if he prayed for us to get straight As, to win a race, to go to college. I wonder if he prayed for us to make it home safe at night and not get into a car accident (it seems, if he did, those prayers went unanswered on a couple of occasions.) I wonder if he prayed for my brother to get a decent job or for my mom to lose weight or for me to break up with that lame-ass compulsive liar. I wonder, if he were alive today, would he be praying for Calvin to stop having seizures?

But I really don't think my dad was much for prayer. And knowing him, I doubt he believed in Christianity with all of its scriptural talk of angels, devils, sin, heaven, hell and a Man upstairs answering supplications—or not. Dad was more of a pragmatic kind of guy, down to earth, and I'm pretty sure he figured that, after a good go at life, he'd simply die and become part of it—the universe—and that'd be it. I imagine it sounded just fine to him to join with the stuff of life—the dirt, the carbon, the oxygen, the nitrogen—earthworms churning it all up into rich soil nurturing some plant or tree that a child might one day prune and sharpen into a skewer to roast marshmallows or hot dogs.

I think about our relationship and how similar it was, in some ways, to the one I have with Calvin. It's reflected in the way he and I are so physical, the way we tickle, hug and kiss, cuddle and hold hands and in the way we don't really have conversations—can't because of Calvin’s speechlessness. It's mirrored in the way we hang out in the backyard caressing the grass and the rough bark of trees, enjoying bird songs and wind in our faces, in the way I show him blooming flowers that I hold under his nose to smell. My boy seems attentive to these things—when so may other things elude his interest—in a way I can't explain but by the passing down of genes, of my dad's gift to me that I in turn gave to Calvin, and it makes me happy.

A few summers ago on the sidewalk outside our favorite coffee shop we met an unusual music man plucking away sourly on his guitar and singing an off-key, nasally tune. We got to talking with him on occasion, whenever we saw him sitting there in his electric cart. He told us of the accident he'd had while drunk driving with his best friend when they were teenagers, how he was thrown from the car and hit a post or tree, about how his friend had died. The man had suffered a terrible head injury, went into a coma, begun having seizures and eventually had to relearn everything as if he were an infant, how to walk, how to talk.

We take Calvin with us to that cafe and guide him through the cozy joint between round tables and errant chairs, past the sharp knees and elbows of coffee buzzed patrons, some with laptops, others sketching or reading. From an inside corner couch the music man eyes Calvin and tells me, in a slurred mumble nearly imperceptible, that all Calvin has to do is to believe—in God and in himself—and he will heal. This is when I politely disengage. I smile and nod and lead Calvin back to the couch where Michael sits with his hot coffee munching a toasted bagel. As we stumble away I consider whether Calvin is capable of having any kind of belief system. What I am sure of is that he—like my dad was—is rooted in the here and now, in the love of the physical world and that which is in front of him, unaware of what might be coming around the next corner or what the next moment might promise. But whatever it is, it’s enough for him not to have to believe, but rather simply to exist, to love and be loved.

I often hear myself say to my boy, "you know I love you, don't you kid?" just like my dad used to say to me. Sometimes he giggles, though I can never be sure if he understands me or just likes me whispering in his ear. No matter, I smile and close my eyes to dream of Calvin and Dad walking hand in hand through a damp mossy old-growth forest where the forget-me-nots bloom in a delicate blanket of cornflower blue and white. Dad's ashes are resting there now under a canopy of blue, green and gold—or sparkling blackness—that one day, perhaps, I can gaze out at in splendor with Calvin and not have to believe in anything but that moment we share in the universe.

In honor of epilepsy awareness month and the three million Americans who suffer from it, please share Calvin's story. Help bring us one step closer to a cure.


live another life

To see my little boy suffer relentless seizures year after year and endure heinous drug side effects—all of which make him slip further and further from his potential—while knowing that so much more could be done in search of a cure, pains me to no end. It doesn't have to be this way if more people would simply choose not to avert their eyes, but instead to get off the sidelines, as so many have done for other causes, and use their power to incite change, promote understanding and spark compassion all in hope of finding a cure for epilepsy, which kills more American’s every year than breast cancer, including our children.

I often wonder if some people stand motionless because they think they don’t know anyone who has epilepsy or are somehow embarrassed by it. But the truth is that we all know someone who hurts from epilepsy, though so many hide it, which is one reason it doesn’t get the attention that it deserves. I aim to change that, but I can’t do it alone. If everyone could just step out of their own worlds for a moment and slip into someone else's shoes who has a loved one with epilepsy—live another life for a moment—perhaps they could find empathy.

Epilepsy is a misunderstood, underestimated, grossly under-funded, stigmatized and neglected disorder. In honor of epilepsy awareness month, I invite you to step into our shoes and encourage others to do the same by sharing Calvin’s story. Help bring us one step closer to a cure. It’s as easy as pushing a button.

photo by Michael Kolster


more momisms

I talk with my mom a couple of times a week. Recently, I rang her for her birthday on a conference call with my sister, Caron. At first we talked on top of each other, awkwardly navigating the three-way conversation, but eventually slipped into a comfortable groove as if we were all in the same room.

Caron and I sang Happy Birthday to her, as poorly as we could manage just for giggles. There seemed to be an echo on the line. “Mom, were you singing too?” I asked. “Sure!” she peeped, and the three of us laughed. Then we quizzed mom about her new age:

“So, how old are you now, Mom?” we asked, and she thought for a long while.

“Eighty?” she replied, without much confidence (at times she’s answered, “twelve?”)

“Plus two. What’s eighty plus two, Mom?” my sister nudged.

“Um, eighty-three-seventy?”

“Nope, you’re eighty-two,” my sister and I both told her.

“Now how’d I happen to do that?”

We all broke out into warm laughter again.

I thought back to the time when Mom was first diagnosed with Alzheimer’s, first started understanding her bleak future of forgetting words, forgetting names, forgetting faces, forgetting everything. “I have a chemist friend,” she’d solemnly announce, with a bitter hint of anger at the world—perhaps at god. She wanted us to know she had a connection to some lethal drugs that she’d use to off herself if she got to a stage where she didn’t want to be anymore. “And I want a Viking funeral,” she’d add, which meant we’d have to figure out how to shove her off in a flaming boat.

Now she’s at the point where names escape her, faces too, but she’s never reached the dreaded stage—or perhaps simply rolled on past it—where she’d want to end it once and for all. My mom seems as happy, healthy, and gregarious as she ever was, and though she’s got a shattered memory she doesn’t appear to be too worried about it. She lives life in the moment, which is something I always aspire to do, something Calvin teaches me to do, never knowing what curveballs life might throw us in the future—even tomorrow—something I've learned since Calvin was born and especially since he started having seizures.

At the end of our conversation I asked Mom how her arthritic knees were. “Uh, they’re still there,” she chirped, somehow aware of her amusing charm to which we always chuckle, and then the three of us exchanged our usual I love yous before we hung it all up.

In honor of epilepsy awareness month please share Calvin's story. Help bring us one step closer to a cure. It's as easy for you as pushing a button.

me, my mom and my sister



We were packed into the grocery store like sardines, a sea of mostly gray-haired, shuffling retirees, a few students and some young parents, pushing carts down aisles clogged like fatty veins, each with our own bumper car loaded up with shiny shrink-wrapped turkeys, plastic bags of stuffing mix, sacks of potatoes, cranberries, pecans, pie crusts and tins of mashed pumpkin.

I squeezed my way toward the checkout lanes, a virtual salmon swimming upstream, paid for my bagged groceries and jumped through the automatic door. Leaving the parking lot my progress stalled by two large neon-yellow vehicles, one fire truck and the other an ambulance. Rubberneckers paused at the crosswalk to ogle the spectacle before merging into the busy traffic on Maine Street.

Eventually it came my turn to witness the scene beyond the flashing white and red lights and buffed chrome. At first glance, feeling a sharp twinge, I thought sure the paramedics were lifting a child onto the gurney but as I got closer I realized it was the head, braced neck and shoulders of a youngish bicyclist. She winced with a grimace of what looked like shock and pain, though might have been described as fear, even embarrassment, I couldn’t be sure. Behind the medics rested her mangled one-speed bike, the kind I used to ride as a child, powder blue, one of those heavy types. Its tires were twisted, warped into some wavy Salvador Dali version of a spoked wheel. An arm’s length from the victim stood an elderly woman wearing a blotchy, tense expression. Frizzy white hair framed her distressed face, one hand leaning precociously on the plastic handle of her metal cane, the other dabbing nervously at her face, her mouth, strands of her hair. She was white as a ghost. I assumed she was the driver, worry etched into her features in some crazy, clownish mask.

I know worry, I thought, the kind that gnaws at the core of my being, chips away at my spirit like relentless, dripping water wears a pit into soft stone. This worry never really escapes me—this watching, waiting, fearing my child’s next seizure. It’s omnipresent—scratching sharply just under the surface, carving ragged ruts into my brow, tearing bits out of my cuticles. The fretful feeling I get is similar to sick coffee jitters and shirking it feels as hopeless as attempting to outrun a train.

Try as I may I cannot seem to flush it from my marrow. This constant worry slices through me like a web of lasers, sometimes strangles me as if a noose, a straitjacket, or some kind of suffocating mummy suit that affords only tiny holes for seeing, two smaller ones for me to eke out a breath if I can manage it. At times it has the weight of a huge rock resting on my chest. But mostly its harm is dark and erosive, feels as though something evil is peering over my shoulder, breathing down my neck.

If it weren’t for the seizures that make my son choke and writhe, and the drug side effects that cause him to dizzily careen sideways, his head missing a rock or the cast iron radiators by mere inches, or causing him to refuse food so that now we’re seeing his ribs, can count every vertebra, I think I’d have less trouble climbing out of this well of worry, might not have fallen in to begin with.

And so I felt for these two roadside casualties, but somehow, strangely, more for the disabled woman standing there on the curb watching her poor victim be carted away with sirens, sorry for the dread she must have been feeling having struck a soft being with a huge chunk of speeding metal. I felt sorry for this unfortunate woman whose life might have just taken a profoundly crooked turn right before her blinking eyes, the broken body under her wheels.

And then, a few blocks from home I passed a beautiful brunette girl named Emily who walks miles each day on our town’s streets, sometimes spinning as she goes, her arms out to her sides like a whirlybird or as if about to launch into a cartwheel. Some might describe her as simple-minded, this girl—woman, really—of few words. She appears to have no concept of worry, of dread, and so I envy her at the same time being thankful for the occasional reminder of her happy presence ambling down the street as I pass. She makes me think of Calvin who, except when he has seizures or feels the drugs’ ills, seems not to have a care in the world, weaving through life’s struggles as easily as a fish swimming downstream, effortlessly coasting with only a smile on his perfectly smooth, worry-free face. And somehow, just knowing that makes my own angst dissolve into a cool clear pool, if only for a moment.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. It's as easy as pushing a button.

photo by Michael Kolster


my thanksgivings

Today, on my favorite holiday, I am thankful for many things. My precious little boy. A farm fresh turkey. A house full of hungry dinner guests. My husband, the cook. Running water. The shape, color and texture of naked branches. Hugs. Thick wool socks that don't itch. Low lights. Gravy. Heat. The smell of a roasting bird. Love. Bourbon eggnog. Black skies studded with stars. Nuts. Tapered candles. Potlucks. A cozy fire. A full glass of red wine. Sharp knives. Jazzy music. A clear head. The beauty of sagging trees leaden with snow. Readers and sharers of Calvin's Story. Helping others. Brown dog. Health insurance. Third cousins, their spouses, parents and kids. Finding Orion. A toothy smile. Girlfriends. Harmony. Cranberry sauce. Brussels sprouts. Homemade dinner rolls with butter. Compassion. Writing. Seizure free days. Goat cheese with fig preserves on a cracker. A roof over our heads. Hot showers. Pumpkin pie, apple pie, pecan pie, blueberry pie all a la mode. Family. A good poem. Hope. Brisk walks on the beach. Generosity. Cold brew coffee. Sound sleep. Flannel sheets. A happy kid. A good movie. Calvin's freckles. Shearling slippers. Walks in the woods spying white tail deer. Holiday lights. Laughter. Bubbly. Chickadees eating the seed outside my window. Good jokes, bad jokes. My mom. Warm gloves, hats and scarves. Leftovers.

On this Thanksgiving day, please share Calvin's story with others. Help bring us closer to something that we would give a world of thanks for—a cure for epilepsy for our little boy Calvin, and the three million other Americans who don't get a holiday from seizures and drugs.

photo by Michael Kolster


idiot. savant.

At first, before the epilepsy, when I’d tell people about my toddler son’s gross developmental delays—the fact that he couldn’t hold his head up until he was almost a year, couldn’t crawl until he was two (and even so, has never crawled very well) the fact that he utters no words, the fact that he can’t walk without falling and thus needs a spotter—they’d say things like, “oh, he’ll catch up,” or “you know, I heard about this boy who didn’t say ‘mama’ until he was eight but he could play Beethoven compositions on the piano after only hearing them once.” Somehow I knew that wouldn’t look anything like Calvin’s future, and though they meant well, their comments only served to belittle and exacerbate a difficult and heartbreaking situation. And then came the relentless seizures, and the drugs—mountains of them—and Calvin's future, his development, seems more bleak with each passing year.

I first heard of a man named William Sidis on the car radio. Born in Manhattan in 1898 to Jewish Ukrainian immigrants, he became a child prodigy. At the age of eighteen months he could read the New York Times and had reportedly taught himself eight languages in as many years, in addition to creating an entire language of his own. He was ready to enroll at Harvard when he was nine but the university wouldn’t admitted him until the age of eleven, citing that he was just a child. And by twelve William Sidis was lecturing the Harvard Mathematical Club on four-dimensional bodies.

Sidis was a whiz at math. It is thought that he had an I.Q. fifty to one hundred points higher than Albert Einstein, that in fact he had one of the highest intelligence quotients ever recorded. But he lived a life of relative seclusion, estranged from his parents before dying at the age of 46 from a cerebral hemorrhage. I doubt, from what little I’ve read and with all his celebrity at the time, that he was a very happy person.

By the standard dictionary definition Calvin is an idiot, though perhaps he might not have been if it weren't for the countless seizures that batter his brain and the mind-numbing drugs meant to stop them. But if Calvin was a child prodigy, a math wizard, a musical savant like Mozart, a chess champion, a genius or had a photographic memory like the character in the film Rain Man, it would be no consolation to me. It wouldn’t assuage the rancor and suffering of his relentless seizures. I’m not even sure it would serve to make him happy. As it is, I’d give anything for Calvin to be healthy—not different—just healthy. I’d give anything not to have to stuff all of these chemicals down his throat every morning and every night, which he does so dutifully, even when he doesn’t want to eat because the drugs upset his stomach and or suppress his appetite, especially of late.

So, no, Calvin can’t recite Bach or Chopin, can’t even plunk out a tune on his little yellow plastic four key piano. He can’t make a mark with a crayon much less scribe a simple equation on a big black chalkboard. He can’t win at chess, beat the dealers in Vegas or tell us what day of the week it was the day that we were born. And he can’t recite pi to 22,500 decimal places like Daniel Tammet can. But Calvin can do what no other human being on this earth can do, which is to love me in a way that is so utterly beyond words, no genius could come close to describing, even if they tried.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. It's as easy as pushing a button.

William Sidis
Wolfgang Amadeus Mozart
Daniel Tammet
Calvin and his Geepa


i measure every grief i meet

I measure every Grief I meet
With narrow, probing, eyes – 
I wonder if It weighs like Mine – 
Or has an Easier size.

I wonder if They bore it long – 
Or did it just begin – 
I could not tell the Date of Mine – 
It feels so old a pain – 

I wonder if it hurts to live – 
And if They have to try – 
And whether – could They choose between – 
It would not be – to die – 

I note that Some – gone patient long – 
At length, renew their smile –  
An imitation of a Light
That has so little Oil – 

I wonder if when Years have piled –  
Some Thousands – on the Harm –  
That hurt them early – such a lapse
Could give them any Balm –  

Or would they go on aching still
Through Centuries of Nerve – 
Enlightened to a larger Pain –  
In Contrast with the Love –  

The Grieved – are many – I am told –  
There is the various Cause –  
Death – is but one – and comes but once –  
And only nails the eyes –  

There's Grief of Want – and grief of Cold –  
A sort they call "Despair" –  
There's Banishment from native Eyes – 
In sight of Native Air –  

And though I may not guess the kind –  
Correctly – yet to me
A piercing Comfort it affords
In passing Calvary –  

To note the fashions – of the Cross –  
And how they're mostly worn –  
Still fascinated to presume
That Some – are like my own – 
—Emily Dickinson
photo by Michael Kolster


slipper sandwich

If my kid could, he’d eat a slipper sandwich, including felt upper, rubber sole and velcro closure—the lot. If I’d let him he’d eat mouthfuls of dirt, pine needles, the bark off a tree, and pebbles of any kind. He isn’t at all discriminating about pebbles. As it is he’s gnawed splinters out of his wooden high chair tray leaving a big round dug out patch in the center of it. He’d bite a chunk out of a drinking glass if he could, but instead he shaves bits off of the hard plastic spouts on his sippy cups, gouges deep ravines into them with his sharp teeth, roughs them up until they're like sandpaper.

For as long as Calvin has had teeth he's used them ... a lot. It's a sensory kind of thing, not uncommon with kids who have visual impairments and kids who are somewhere on the autism spectrum, which, we've been told, Calvin is, though I imagine his behavior is as much due to the seizures and the drug side effects as anything.

Calvin came home from school the other day with some sticky black tar around his mouth, on his nose and behind one ear. He’d yanked off his glasses and had been chewing on them, must have dislodged the gooey, melting electrician’s tape I’d used to doctor them up some months back. The tape was nowhere to be found. I might find it later, if you know what I mean.

He eats my hair if he can get it into his mouth. I’ve seen a long, beaded piece of it come out in his poop. Pretty. But his favorite things to munch on are his slippers, shoes, socks, books, the side of the car, the wooden shutters in the bathroom, the brick wall, the radiators, the tile and grout in the shower, the faucet in the tub, all of his toys and the rickety rattan basket that held my wooden blocks when I was a child that is now used as a hamper for dirty clothes.

I feel like I’ve told Calvin to stop biting things at least a billion times, which makes me wonder if my little beaver is ever going to leave it. If not, we’ll have to invest in a few more pairs of slippers than your average parent, and I'm sure they'll all be considered the flavor of the day.

In honor of epilepsy awareness month, please share Calvin's story. Help bring us one step closer to a cure.


before dawn

Hiss. Buzz. Crackle. All night long, every night, I listen to the monitor from hell. Got to replace the battery to see if it will stop its loathsome sputter. That monitor is one of those things that we can’t live with and we can’t live without, had been there for us when Calvin had a seizure in bed while we were eating dinner once. We’d found him mangled, partly on his stomach, partly on his back, with his face smashed into his down comforter. Finding him like that made me wonder, if we hadn’t had the monitor, would he have suffocated during that seizure? Would we have gone up to bed that night to have found him dead, like some parents of kids who have epilepsy do, like all parents of kids who have epilepsy dread.

The downside of using the monitor is that I get very little sleep, waking to every stir, swoosh, sigh, whimper, snort, rustle. This morning, long before dawn, not unlike the previous five mornings—perhaps the previous five years—I awoke to the sound of my boy smacking and rubbing his forehead, likely due to a headache either from his new anticonvulsant drug, his ear infection, or both. So I repositioned him and covered him for what felt like the millionth time, and gave him a Tylenol and a sip from his bottle. Within forty-five minutes he was asleep.

In sheer exhaustion and exasperation I crawled back into bed angry at the world. Through the windows I watched the familiar, black pines swaying gracefully in the wind, heard the chimes melancholy tune, thought about Orion and the man on the moon hanging silently somewhere in the sky over our house and felt sorry for myself. And then, my mind wandered to another family who might be sleeping under Orion's gaze, whose father wrote to me last fall about his son who, at the time, was hospitalized for a risky, medically induced coma to try and stop his seizing:

no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Then I realized how so many of us have it hard, some more than others, and I stopped feeling sorry for myself, wanted the hurt of others to go away.

Calvin slept soundly the rest of the night and didn’t wake until six. I rolled out of bed feeling somewhat rested and thankful that we weren’t in a hospital, thankful that the night’s anxious, hopeless, melancholy dissolved some with the dawn. And reaching over to turn off the hissing monitor I heard my child’s sweet eager coos calling for his mama, even amongst all the hissing and crackle—and I felt grateful.

In honor of epilepsy awareness month, please share Calvin's story and help bring us one step closer to a cure. It's as easy as pushing a button.

photo by Michael Kolster


sometimes heartbroken

Sometimes, I am completely heartbroken when I see that Calvin is in pain, sweet tears running down his little hurting face. Often I have no idea what is wrong—he can’t begin to tell me—and thus I feel practically helpless to do anything to make it better save holding him and rocking him in my arms.

I know all kids get hurts and pains—that's life—but it's just so sad and senseless that, on top of bumps and bruises, sore throats, ear infections and tummy aches, he has to bear endless, pounding seizures and sickening side effects from the anticonvulsant drugs.

I can put a band-aid on a sore but I can't make the seizures stop or the headaches, nausea, confusion, lack of coordination, lack of appetite, double vision and dizziness (to name a few) go away. He's just a little kid who has endured a lifetime of suffering, and there's no end in sight as long as we don't have a cure.

In honor of epilepsy awareness month while being mindful of all the little kids who suffer needlessly from epilepsy, please share Calvin's Story and help bring us one step closer to a cure. It won't hurt you one bit.


margarita mamas on mars

There’s few things better than sitting on a red vinyl and chrome stool—Danny behind the bar crafting grapefruit margaritas—with a couple of chicks over a platter of nachos at the local Mexican hangout.

It all started with Calvin ... and Ellis. Ellis is one of Calvin’s classmates in his first grade mainstream homeroom. I’d met her at school and then again while out for sushi with my in-laws. She’d introduced me to her mom then, who seemed nice enough.

Wednesday, I woke up feeling better than the day before, which wasn’t hard, having cried a lot over an unhappy, sick child who, of late—likely due to his high doses of seizure drugs—isn’t much interested in eating. I’d spent some time staring off into a blurry space wondering where it all went so wrong, what I might have done during my pregnancy to have hurt my baby’s brain and feeling guilty for being frustrated, angry and impatient with my sweet, innocent, good child’s inability to stand upright and walk by himself without falling. And then I get this email ... this email from Ellis’ mom in which the first line reads, “ellis wants to have a play date with calvin.”

As it happens Calvin had his first play date yesterday. I invited over my new friend Sarah and her boy Jacob who shares some things in common with Calvin—his wordlessness, his innocence, his inability to walk unassisted, his slow development, his delicious cuteness. But if memory serves me, Calvin has never been invited on a play date before. Ever. I reread the email to Michael and wept.

Later, as I was taking a shower, the phone rang. I played back the message of an unfamiliar, husky female voice announcing, humorously, that she felt a bit like a stalker calling me. It was Kim, Ellis’ mom. She mentioned she was heading out later for some impromptu margaritas with a couple of friends who she thought I might like (she’s been reading the blog religiously so knows me to some extent) and would I like to join?

So while Michael was home trying, mostly unsuccessfully, to get Calvin to eat something, Mama was out getting a buzz with a basket of chips under low lights amongst happy faces, some familiar, some not.

The three of us gals talked about a whole range of things from chocolate milk, to our kids, to the wall of shame in our kid's cafeteria. From the importance of educating children about different kinds of families (ones with two moms or two dads, no dads and the like) to beans and pregnancy. We even talked about a grandma trapped in a small closet with a raging electric floor sander. You name it—we just about covered it. I made some new friends, broadened my horizons, and ate some pretty kickin' nachos, ta boot.

With an icy cold glass in her hand, Kim told me that now, after having read much of Calvin's Story, when her kids get out the scissors and a ream of paper and proceed to cut it to shreds, into billions of tiny pieces, instead of getting perturbed thinking I have to clean this mess up, she stops herself and thinks I GET to clean mess this up. When I heard her say this, looking into her clear dark eyes, her smooth, perfect complexion in no way reflecting her forty-five years, my heart swelled. She gets it, I thought to myself, and smiled, she appreciates what Calvin and I are missing and she's bold enough to risk saying it.

I remember telling other moms about my child whose brain wasn't complete, who cried incessantly, my child who couldn't crawl, couldn't sit up, didn't want to eat, who was missing all sorts of milestones, whose future was dim at best, and some would say, “welcome to motherhood.” When I told them that my son couldn't walk some said, “be thankful, because once he starts walking you'll never get to relax,” and when I told them about my toddler who seized, had to take medicines and whose speech wasn't emerging some said, “well, when he does start talking you'll be wishing he'd shut up.” It seemed they were trying to level the playing field, to include me in the shared sport of motherhood. I understood that. But what they didn't realize was that, in my humble opinion, we were playing different sports. And even though all mothers have immense challenges, it still seemed to me at the time that they were lawn bowling on some very tidy green with, perhaps, grass stains on their knees while I was sweating in some boxing ring, being thrown against the ropes, getting roughed up and bloodied, sucker punched, knocked down and stomped on all by my little defenseless, drugged up kid and his relentless seizures.

Not long after Calvin was born a friend sent me a story called Welcome to Holland, in which the author attempts to describe what it is like raising a disabled child. She compared it to planning a vacation to Italy only to be rerouted to Holland. I never liked that story and thought, if I had written it, I might describe raising a disabled child like planning a trip to Italy but ending up in a war zone or perhaps even on Mars, which is where it feels I live much of the time.

But fortunately, in my travels through life with a sick, disabled child, I've met several moms, some with disabled kids of their own, some not, who'd gladly travel to Mars with me, who've maybe been there before, and who sometimes, I think, perhaps even came from there, like I think I did.

Good thing here on Mars I can still get Danny to make me a galumptious grapefruit margarita that is simply out of this world, and takes me there.

Please take this opportunity to share Calvin's Story in honor of epilepsy awareness month. It's as easy as pushing a button.

Calvin, Rudy and Jacob


poor little kid

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

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

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

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

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


ichigo ichie (一期一会)

Treasure every encounter, for it will never recur.

—Japanese tea ceremony contemplation

photo by Michael Kolster



Mark Twain’s youngest daughter, Jean Clemens, suffered from epilepsy. At the time there was no drug therapy for the disorder and thus its victims were subject to progressively frequent and worsening spells, because seizures, if left unattended, burn out of control like a wildfire devours dry brush. Jean died at the age of 29 when she drowned in the bathtub while having a seizure.

One year ago Calvin was taking only one anticonvulsant drug in the continuing effort to smother his seizures. He was having two or three grand mal seizures a month, far better than the dozen or two he was suffering the year before. Nevertheless, the wicked fits kept setting sparks, finding ways to wreak havoc and burn uncontrolled in our son’s brain, with ever increasing visits.

Some people who have epilepsy experience a honeymoon period when they try a new drug and can experience a few weeks or months of seizure freedom, but at some point the honeymoon is over, and the seizures return, often worse than before. The natural instinct is to continue to increase the drug(s) in hopes of stomping out the seizures once and for all. And while that may work for a while, the insidious fits often appear again like a vicious rash, a firestorm.

The only hope for those who suffer from epilepsy—for their families—to live some semblance of a normal life, one without the promise of looming seizures, repeated trips to the hospital, developmental delays, an entire lifetime of drugs and their heinous side effects and the constant fear of death, is a cure. Right now there isn't one, and most of epilepsy's meager resources go toward researching treatments instead of researching a cure.

So our little Calvin who, before the seizures, had it pretty rough to begin with, is stuck living a life inconceivable to most, while we must pump him full of drugs, only to sit by helplessly and watch while he continues to suffer seizures anyway.

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

Calvin having a grand mal seizure



Pitch black outside, cold and damp, the sun not having come up yet. I’m slouched down, my winter coat covering my chin, almost drifting back to sleep, fists shoved deep into my pockets. I’m trying to keep warm flanked by my buddies—Lidia on one side, Katie on the other—in the back seat of Pam’s beater Nova or perhaps the Tjelle’s sixties Mercury Comet, the kind with the slanted tail lights.

In the swimming pool parking lot we idle silently in darkness as other cars arrive shining harsh headlights into our warm interior, square patches of light shifting and panning over our tired faces. We wait for Coach Bourassa to arrive and unlock the door, secretly hoping he won’t show so we can go back home to bed. We need our sleep, but it is perpetually denied.

Most certainly, every day I think back to my youth as a competitive swimmer, it has shaped me so. I ponder the grueling practices, the nerves before a race, my inspirational teammates, our failures, our triumphs, the adrenaline surging through veins, the costs and benefit of a lifetime in the water.

Barely fourteen and still in junior high, Lidia and I, and quite a few of our elders, swam double workouts on our high school and AAU teams, five—sometimes six—days a week, plus weight training. We sweat, we burned, we ached, we suffered. In my opinion there isn’t a tougher sport to practice than swimming with its few breaks—only minutes to linger between mega-sets of 200 I.M.s or 500 freestyles, only seconds of rest in between each one, sometimes none if you can’t beat the clock, swimming four, five—or more—miles every day.

Our fiercest rival was Newport High. Both coaches were imposing men, each easily six foot four—massive figures. Newport’s coach kind of resembled Burt Reynolds with his dark wavy hair and a large mustache. He was silent, calculating. Our coach with his chiseled features was more of a John Wayne type, in fact had been the actor’s stand-in in a few films. His puffed-up barrel chest accentuated a Pepsodent smile, and though perhaps cool on the outside he was wound as tight as a drum, and if you looked closely you could see worry in his flexing jaw, he cared so deeply.

My sophomore year, 1978, the State Championship comes down to the 400 freestyle relay. Coach picks me as lead-off because of my quick reflexes, always first off the blocks. A few rows up in the stands, as we nervously shake out our muscles, position and reposition our goggles, my brother Scott looks at me, cups his hands around his mouth and yells, “fifty-five!” I’d only broken fifty-eight once, the day before in the 100 freestyle semis with a 0:57.75. I stepped up on the slanted lane four block and raised both hands in number ones. Crack! The starter’s gun explodes, my muscles tense and catapult me off the blocks. First in the water. I strong-arm the cool liquid holding my breath until just before the turn. Smack! I hit the wall with the precision of the thousands of turns behind me, shoot off into a tight arrow, head tucked between my arms streamline like a human bullet. My lungs burn but this has to be all out. The next turn is just as solid as the last, and the next into the final length. Six swimmers in a V-shape like some flock of geese, foaming water in our wakes. Again I hold my breath to the finish, reaching—nearly on my side for the last stroke—extending my arm as far as it can go and hitting the finish pad hard as my teammate stretches out above me from the blocks like an airplane taking flight.

I turn around to see the electronic timing board. My lane reads 0:55.97. I look up at my brother and smile. He and my parents—the crowd—are all going crazy. As each teammate swims her segment we gain momentum. Joni, Pam, then Lori, the fastest of us all and an animal competitor. She pulls nearly a body length ahead of Newport and, amongst deafening screams from the crowd in the cement and tiled pavilion, we win the race with an All-American time. And our entire team wins the state championship.

I am reminded of this relay, and of my years in competitive swimming, as much for the pain and triumph, and building of my character, as for the incredible sportsmanship and teamwork I enjoyed from my fellow swimmers. I couldn’t have achieved what I did if it were not for my coaches, my teammates, my managers, competitors, family and friends. My success was the total result of a team effort, just like raising Calvin with his profoundly difficult developmental delay and intractable epilepsy. I don’t do it alone—couldn’t. And I have the emotional support from a lot of the same people that were cheering for me from behind the blocks, on the pool deck, in the stands, even some from other teams, and others I’ve met since then.

I remember a meet my senior year as team captain. Before the competition began we taped up posters we’d painted the night before. I lead the girls around the pool deck chanting and cheering to psyche them up. The opposing team did the same behind their svelte captain, the future three-time Olympic Gold Medalist, Mary Wayte. As we passed each other on the narrow deck she snarled at me, “we swim you for practice.”  I smiled, thought it was a pretty clever, provocative remark, wished I had thought of it myself. To this day I’m glad we swam each other for practice, she was tenacious as shit. I’ve benefited from that kind of thing in a most profound way, and, as a result—perhaps more importantly—so has my sweet little Calvin.

In honor of epilepsy awareness month, please share this story with others. Be part of the team that brings us one step closer to a cure.

Sammamish High School 200 medley relay - Katie Tjelle (in pool), Lidia Yukman (crouching), Debbie Kelly (behind block) Jo Belyea (far right)


not nearly enough

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

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

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

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

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


saturday drive

The birdbath has iced over several times this fall, thin copper pine needles embedded in its frosty surface. A few dry leaves still cling to branches, quivering in the mild breeze. Although it’s barely forty outside, the sun is warm and inviting and Calvin and I need something to do. We can amble around the house inside and out, go upstairs and downstairs and play with the shutters only so many times before I feel like I’ll go nuts. I help him on with his puffy coat, “stand up by yourself while Mama zips you up,” I tell him, and he obliges without the faintest notion he’ll fall backwards. He’s made some progress, I think.

Outside he beats on the car and tries to mouth it, then grasps the door handle like I’ve taught him how to do. “You want to go for a car ride?” I think I hear him say “uhm.” I load him and Rudy into the car and remove Calvin’s glasses to prevent him from yanking them off sideways then bending and chewing them the way he’s prone to do.

I choose a favorite route past Maquoit Bay where the tide is low and clam diggers are out breaking their backs in the beautiful muck under a powdery blue sky. We pass clusters of prickly shrubs encrusted with bright red berries, the kind I braided with my friend Joanie's grape vines when I made holiday wreathes a few winters ago. There’s a big weeping tree leaden with yellow apples like some kind of golden goose eggs, and a tangled one with fruit the color of ripe persimmons.

A winding road leads us by huge weathered barns and countless stacks of baled hay, some shrink-wrapped in thick white plastic like shining colossal marshmallows. All the while I’m reaching back to bat Calvin’s index finger out of his eye or telling him not to stare at the sun, something he does every chance he can get, no matter how small the sliver of light.

At the crest of a hill I spot my friends standing in the narrow shoulder with their bikes, helmeted up and dressed in the tight, bright regalia of cyclers these days. I don’t want to startle them with a honk so I wave but they don’t see me. I wonder where their kids are, what they’ll be doing this glorious fall weekend.

A mile or so further we approach the farmer’s market. We used to go there every Saturday years ago, before Calvin started having seizures and when he was more willing to walk some. Now he just wilts in the sun or laughs so hysterically in it that he collapses, can’t even stand up on his own. And I still fear the seizures. Honestly, the experience is a bittersweet one. I enjoy seeing the colorful produce, listening to the folky fiddles and guitars, hearing the hubbub that is the marketplace, treating myself to one of Barack’s sweet, crispy almond pastries. But it’s painful, too. All those healthy kids running around, eating cookies, petting dogs, jigging to the music, making new friends, weaving in and out between puttering adults whose hands are free to select pints of cherry tomatoes, discs of pungent goat cheese wrapped in plastic, hard, heavy butternut squash, farm fresh eggs and fragrant loaves of artisanal breads. Their kids help them tote heavy bags of the stuff to their cars, even the little ones do. At times it’s too much to take in, too much revelry, too much “life is good” going on, which is not to say that I don't love my life, but rather, I'd love my life more if Calvin was healthy. And so we sail on by while my boy pokes his eyes, completely oblivious to what he is missing.

As we make a sharp right onto our street, follow its mild curve to the left, Calvin becomes animated. We’re told he can’t see squat without his glasses but somehow he knows we are almost home. It must be the feel of that particular turn at the particular speed we take it, or perhaps it’s the pattern of familiar arching trees that he can make out through the sun-roof. Whatever his method, he knows, and he kicks and squeals the whole way down the street until we pull in to our favorite place in the world, which, of course, is home.

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


the most beautiful people

The most beautiful people we have known are those who have known defeat.. known suffering, known struggle, known loss, and have found their way out of the depths....These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen....

Elisabeth Kübler-Ross

Senior Chief Hospital Corpsman Huben Phillips holds a young earthquake victim that he helped evacuate, on the USS Bataan, off the coast of Haiti, January 20, 2010. UPI/Kevin Dietsch


forbidding sky

Today my mood is gray as the sky. My eyes feel weighty, my soul empty and cavernous. And, like the sky promises to do, little droplets of water cascade down my cheeks and splatter on the ground, even as my boy hugs my neck.

This morning Calvin is a bit of a psychopath, grinding his teeth, uttering guttural screams and rolling hums while snapping his fingers wildly. He mustn't feel good. I can feel the furrows set into my brow, like his own—the worry that I detest but cannot seem to control—and glimpse the reflection of my sorry mug in the bathroom mirror as I follow behind Calvin in his endless, manic pursuit of banging the window shutters.

This third anticonvulsant drug we’ve added to Calvin’s regimen, Keppra, seems to be doing a better job at controlling his seizures, but drug increases always come at a cost. Over the course of the last month, as we’ve titrated up on his dose, my little madman’s appetite has become increasingly worse, even refusing several meals.

About two and a half years ago we began weaning Calvin off of one of his three anticonvulsant drugs—a benzodiazepine related to Valium—because he’d become a zombie. He’d stopped eating half of his meals, wouldn’t take anything but yogurt, and regrettably lost five pounds in a couple of months (he was pint-sized to begin with.) To add insult to injury he began refusing his seizure medicine or—easily as stressful—held it in his mouth for up to ninety minutes before swallowing. As he reclined on the couch we sat anxiously by his side hoping the syringed medicine wouldn’t dribble out between his lips. It was as if he’d forgotten how to swallow, indeed one of the side effects of benzodiazepine withdrawal in addition to increased seizures.

This morning’s breakfast was a sour déjà vu of those times. It was clear Calvin didn’t want to eat but I had to coax several spoonfuls of yogurt in as the vehicle for his seven-and-a half pills, all but one of them anticonvulsant medications. “Calvin, this is your medicine, honey. You have to take it. Please take a bite for Mama, sweetie.” Eventually, after trying to reason with him, he relented and opened his mouth. “Good boy, Calvin!” Michael and I chimed, “what a good boy!” as I embraced him closely and kissed his cheeks. But that was it. He refused to eat anything else, a sad replay of last night’s dinner, the previous breakfast, dinner the night before and in days past.

I often think back to the time before Calvin had seizures, to the time where—like most people—I thought epilepsy was no more than an inconvenience, a benign condition where you could take a pill and everything would be okay. The reality couldn’t be more different. Epilepsy has turned our world upside down, shaken it to its core, battered us, bludgeoned us, wrung us until we’re withered and dry. We wake up every morning and realize, with no cure in sight, that this is going to be our life, our life with a child who at times is a zombie and at others a little psychopath and who barely progresses, a life full of seizures, worry, suffering, mountains of medications, sickening drug side effects, gross limitations on our daily activities—our dreams, our pursuits—and constant, gnawing fear. Would anyone choose that life? No. But, without a cure, unfortunately we have no choice but to live under this endless forbidding sky.

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

photo by Michael Kolster



On Michael’s first morning back from a week’s long trip to Virginia we all enjoyed bacon and toast with farm fresh eggs from Milkweed, hand delivered the day before by my friend Lucretia’s sweet boy, Finnegan.

The day was wide open, Calvin having recently given up his afternoon naps, the weather gloriously mild and sunny. “Where should we go?” Michael asked. We never seem to have many ideas because Calvin is such a tough guy to bring places, often collapsing on the ground in stubborn refusal when he doesn’t want to walk. “Why don’t we load the stroller into the car and head to the beach?” It was still early, so we had plenty of time for the forty-minute drive to and from Fort Popham.

I spent much of the ride thwarting Calvin’s attempts at ogling the sun while trying to enjoy the final, fading colors of fall. Clusters of naked birch trees with slender, peeling, whitish trunks peppered endless miles of pines, spruce, maples and oaks. The vibrant reds have mostly gone by leaving acid greens and squash yellows. “Was I supposed to bring the stroller?” Michael asked, knowing the answer to his own question. I just smiled, saw it as an opportunity to try walking Calvin in a new place.

The beach was mostly deserted and as soon as Michael unloaded the kid he bolted for the grassy dunes, seemed immediately taken by them. Close behind, I watched the two of them sink their feet into the soft, uneven sand, Calvin’s weak ankles turning inwards over little mountains of the stuff. We stepped gingerly over a pile of dried reeds, like straw, around tangled bundles of smooth, ashen driftwood and crusty seaweed, then onto the firm hard sand down near the surf. In his customary Labrador manner, Rudy waded into the frigid water and dunked himself right up to his collar. We laughed.

Amazingly, Calvin just kept on walking, like the Energizer Bunny, sometimes holding both of our hands, at others just one, or motoring along with Michael firmly grasping the back of his collar. “Oh, I so wish I could just let go and he’d walk without falling,” I lamented, knowing that Calvin falls easily always risking significant injury, his little arm muscles too weak for the crashing weight of his body, his head. “I know,” Michael empathetically replied.

A warm breeze fingered through my hair. Gazing up into the clear blue I dreamed of a day Calvin and I wouldn’t have to be tethered to each other. A day where we could both be free to skip and walk and run, chase each other through shallow waves and warm sands, arms outstretched in imaginary airplanes. We'd be totally unencumbered—weightless—me not having to hold on to him and Calvin not having to hold on to me. I'm not certain if that day will ever come unless Calvin stops having seizures and doesn't have to take the damn drugs anymore.

"I hope it's not too good to be true," I said, noting his incredible walking which usually occurs just before a bad seizure. "Me too," added Michael. At one point we turned around and Calvin walked back most of the way, then fatigued, so Michael hoisted him up onto his hip. With one arm slung around his daddy’s neck Calvin opened his mouth and gently rested his teeth on Michael’s nose. “Ohhhhhhh—daddykisss!” to which Calvin delighted in giving him three more before we trudged through the tall grasses, Rudy just at our heels, and made our way back home—smiling.

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


no way to live

As I watched this poignant eight-minute documentary film of siblings and children of victims speaking passionately about their experiences living with a loved one who has epilepsy, I broke down.

I realize that on any given day we have to stay strong, have to accept what is the unacceptable, have to live amidst fear, pain, sorrow and regret. It's really no way to live, but until we find a cure, it is the only way we know how. Watch and be enlightened.

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



I often remember back to the day Calvin was born, six weeks too early and by emergency cesarean. The doctors in the neonatal intensive care unit told us he had very poor muscle tone and hadn’t been able to adequately breath on his own, needed to be put on a respirator. Calvin couldn’t keep his heart rate down or his body temperature up. They told us his ears seemed low, his pinkies curved in and his eyes were too far apart, all signs that he might be suffering some serious genetic syndrome. My mother has a wide nose bridge, I’d tell myself, he’s a preemie and has shark eyes anyhow. What do they know?

My memories drift to the first few weeks of his life when he wasn’t able to nurse, hadn’t yet developed the suck-swallow reflex and couldn’t latch on, had to be fed predominantly by a plastic tube threaded through one nostril and into his stomach. After meals he’d arch and scream with terrible gas pains and burning reflux. He was barely five pounds, hadn’t put on much weight, and was as floppy as a well-loved rag doll.

At four months of age Calvin began physical therapy, followed by occupational therapy and speech language therapy when he was just six months old. During PT we’d lay him down, his tiny arms and head supported by a neon stuffed fabric worm, an arched play-mobile suspended above him. Just within reach, and close enough for him to see with his terribly impaired vision, dangled some bright plastic rings, a green frog sprouting striped legs with feet that rattled, and a shiny round mirror, things any infant would love to bat and swing. But Calvin’s arms remained flaccid at his sides, as if gravity were a giant magnet pinning them to the floor. Peggy, his PT, had given me a complex chart of developmental milestones for a child’s first three years. I marked it with an orange highlighter and dated it in black ink whenever Calvin met any. For months the chart remained mostly blank. It still is.

The neurologist told us that Calvin was missing as much as eighty percent of his white matter, the brain’s super highway responsible for transporting messages between different parts of the brain and his body. He gave us the grim news that Calvin might never walk, might never talk.  My precious son, I sometimes thought, my only child, might never become more than a blob—a crying, floppy, useless, blind-as-a-bat blob. The image was petrifying and all too real. But never did the man mention the possibility of seizures.

Then, at the age of two, the seizures came. I'd read about them, the way they can strike anyone without a moment's notice, and especially kids with cerebral palsy, autism, developmental delay, mental retardation and preemies. First, they came slowly, infrequently, then descended like a cloud of locust in a single day—not hundreds like some children suffer—only a dozen or so, but they devoured my spirit and shook my countenance as if it were so, and landed us in the pediatric intensive care unit more often than I'd care to remember. Who knows what havoc they were wreaking on poor little Calvin's delicate brain? And as the fear and reality of the seizures consumed our world, the missed milestones—to a great extent—were forgotten, didn’t seem to matter. Our child was profoundly ill and no drug, or combination of drugs and dietary therapy, could stop them—these seizures, like freight trains burning up miles and miles of tracks in Calvin’s brain.

And while I still grieve the fact that Calvin can’t yet walk unassisted, can’t utter any words, can’t do any task without our help, those missed milestones have taken a back seat to the relentless seizures, without which Calvin wouldn’t have to ingest so many mind-altering, sedating, over-stimulating, dizzying, debilitating drugs, both of which (the seizures and the drugs) cause him to miss the milestones anyway.

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