monster child

screams

screams, screams
ears ringing, holding
voices echoing 

humming

child

aching child
teeth grinding inside
pure crazy 

laughter

what drugs have done

what is he
thinking, feeling
i don’t know
can never 

know

screams piercing
voices calm, soothing
hands clapping

bang, growl

whimper

we come undone

fists
rubbing eyes
pushed, poked
pulling hair
out, out

unrecognizable

yet same
monster lunatic
baby child
reaching, kicking

i don’t have it in me

screeching
who is he, what is he
he is me and i am him
we are each other
entwined

this my monster child

Please share Calvin's story and help bring us one step closer to a cure, one step closer to a seizure-free, drug-free life.

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

you've been served

Written by Tracy Dixon Salazar, Savannah's mom

When your child turns 18, most people think about things like "hey, you're an adult now," and "have you registered to vote?" and "why don't you get a job?" But not us. That would be way too conventional. No, we get to think about something called conservatorship. If you're not familiar with this loaded little word, let me acquaint you.

A conservatorship is the process where you either get to pay a lawyer lots-o-money to draft exactly fifty-six legal documents for you (or if you don't have lots-o-money, you get to figure out how to fill out these documents yourself in a painstaking process that involves at least five pounds of weight gain due to stress eating.) The purpose of these exactly fifty-six legal documents is—without sugar-coating it at all—to take away Savannah's rights and give them to someone of "normal" IQ (namely us, her parents, although the IQ thing might be debatable) in an effort to protect her from being taken advantage of by the slimeballs of the world. The seven rights being taken from her include the right to sign a contract, to consent to marry, to choose her residence, to keep her private records private, to consent to sex (betcha didn't know that was a right that could be taken away from you, huh?) and stuff like that. If that doesn't say happy 18th birthday, you're an adult now, then I don't know what does!

So as you can imagine, having to file for conservatorship is about as much fun as dental work or IRS audits. And all kidding aside, it represents just one more blow delivered to us by the scourge that is epilepsy. Your daughter lived to be 18, yay. Now you get to take away her rights. I feel like one of those inflatable punching bags they sell for kids that get punched and pop back upright. Epilepsy throws the punches, and we pop back upright . . . eventually. Thank goodness we have Savannah in all of this or we'd be insane.

In the process of filing for conservatorship, Savannah had to be served with the court paperwork in case she wanted to protest. So we had our good friend Nancy serve Savannah the paperwork. And in true, beautiful, loving Savannah form, she smiled, hugged Nancy, said "thank you," never opened the letter at all, and proceeded to sleep with the letter hugged tightly in her arms that night. So as always, I have this great memory of my sweet, sweet daughter that will always overshadow anything sad about the whole conservatorship process. She keeps me smiling. Thanks Savannah. Now go get a job.  :)

Please share this story to help bring us one step closer to a cure for epilepsy.
Savannah Smiles (despite epilepsy)
Give: http://www.calvinscure.com

Savannah is now 18 and has had over 25,000 seizures since she was two. Her mother got a PHd in neurobiology and is trying to find a cure for epilepsy.

elephant man

It’s a beautiful, disturbing charcoal dream: a silent howling woman in a slow-motion blur of hair and teeth, groans of pounding gears and hissing steam, the haunting roar of an enraged elephant. It’s the opening scene of The Elephant Man, but the dream shares the gloom and rush of blood from a recurring dream I had as a kid, throbbing through my ears. In my dream a huge boulder thunders down a steep jagged butte headed for a tiny baby, sitting in a meadow at the base of the slope. A single hair on the top of the boy’s head plucks like a harp as the gigantic stone approaches; it’s looming shadow finally engulfing the infant’s oblivious form just as I wake up.

The film, based on fact and directed by David Lynch, remains an all-time favorite of mine since first seeing it nearly thirty years ago. In an outstanding performance John Hurt plays John Merrick, an abused, circus "freak" in late 19th century London, who is discovered by a physician, Frederick Treves, played by Anthony Hopkins. Merrick suffers from a congenital defect that has rendered him hideously deformed, crippled and dying.

Merrick is at first assumed an idiot, a simpleton. He lives behind a burlap bag with one oblong hole cut out to see beneath a slouching black cap. The rest of his body is hidden under a dark cape. He’s beaten, humiliated and abused by self-serving individuals throughout the film. He goes from being gawked at by circus goers, assaulted by his manager and nakedly scrutinized by curious physicians. At one point, Treves, who has taken Merrick under his wing, asks himself, “Am I a good man ... or am I a bad man?” for having subjected the innocent soul to the perverted ogling of some in high society. Yet, through all his tortures Merrick remains as grateful as one whose life had been saved, and indeed, his had been.

Watching, I found myself entranced by Merrick’s left arm and hand that appear and function normally. I was spellbound by his hand’s beauty and perfection revealed in shocking juxtaposition to the rest of his disfigured, monstrous form. For me, his hand became the oddity and I could not avert my gaze. And in his slender fingers I saw beauty and grace that mirrored itself in his gentle spirit, his kind heart, if not even in his perseverant, lopsided, dragging gait.

Midway through the film I heard Calvin whimper in his sleep. I ran upstairs to learn he had dirtied his diaper. Michael came to help. Half asleep, our sweet boy rubbed his head, stretched and writhed in a dreamy drugged-up stupor. His cheeks were pink, his hair tussled, his belly soft and smooth as dough. He’s so beautiful, I thought, so innocent, and I kissed his warm forehead. My heart winced with love as I realized, gazing at him, that my boy’s brain is as messed up as the elephant man’s contorted frame.

I wondered about that recurring dream; imagined it as some sort of harbinger or omen of what was to come, of some gigantic invisible rock that had smashed my boy’s brains to smithereens yet somehow preserved the utter perfection of his body. And I realized that these two innocent souls, John Merrick and little Calvin, are the same: both crippled, disabled, devastated, yet both filled with the kind of love and grace and beauty sometimes difficult to discern in the ordinary.

Joseph Carey (John) Merrick , August 1862 – April 1890

shadows and brilliance

Not one day goes by that I don’t walk under the shadow of epilepsy at least once. Constant reminders of the sorry state our son has been living in for nearly six years greet me around every corner.

Yesterday morning while I was feeding Calvin breakfast I think I discovered the source of his inconsolable pain in the immediate wake of Tuesday’s seizure. He had bitten his tongue, badly enough to snap him out of his postictal daze, but I hadn’t noticed the crimson bite marks until today. As far as I know Calvin had never bitten his tongue during a seizure before but it seems, with this heinous disorder, there is a first for everything.

Just after noticing the wound I had to give Calvin an additional 125 mg of Keppra anticonvulsant, buried in his yogurt, in hopes of knocking out his seizures once and for all. It’s something that we’ve been trying in vain to do since his diagnosis by constantly increasing his medications, adding on medications and changing medications. This time I convinced his neurologist’s nurse to agree to reduce one of Calvin’s other anticonvulsant drugs at the same time (one that has had questionable efficacy) something docs don’t seem to make a habit of because they want fewer variables and they don’t want to risk giving up any perceived seizure control. I’m usually with them on that, but in my experience the constant increases in medications always come at a cost to my son’s developmental progress and quality of life yet haven't yet stopped the seizures.

After breakfast we took a ride to our favorite coffee shop in the next town over. We stopped off at our friends’ house to deliver some chocolate chip cookies welcoming them home after a six-day stint in the hospital with their six-year-old son. He’d been admitted because of a virus that was seriously affecting his respiration and he’d been in and out of the pediatric intensive care unit (PICU) needing oxygen for dangerously low nocturnal desaturations. The boy has an extremely rare genetic condition called MECP2 duplication syndrome that has compromised his development and muscle tone, making him an easy victim for pneumonia from something as benign as a common cold and possible prey for seizures.

Stepping into their house I was greeted by my dear friend Sarah and her smiling little Jacob. He had a healthy glow about him that made me very happy. I embraced them both and began to cry, all my worry for them raining down my face. I was reminded of the countless times we’d been in the PICU with Calvin—the viruses, the pneumonia, the status epilepticus, the emergency intubations, the brush with death during a forty-five minute seizure. I knew her worry and had claimed it as my own.

And though I walk in epilepsy’s shadow daily, it is under that same dark cloud that I’ve met some extraordinary men, women and children who lend their brilliance and energy, can make the sky rain tears and the universe burst with heartaching love causing all the hateful, unwelcome, inevitable pain, sorrow and suffering of epilepsy to become something close to bearable, if not dissolving it even just a little.

Please share Calvin's story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
Donate to MECP2 duplication syndrome.

Our dear friends Luke, Jacob Diego and Sarah

make a life

We make a living by what we get, but we make a life by what we give.

—Winston Churchill

Please share with the world.
Give: http://www.calvinscure.com

Calvin being pushed by his cousin Ethan

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 to them, I figure if I can rub elbows with these wonderfully curious—yet in many 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.

A version of this was originally published in April 2011.

Please share Calvin's story and help promote much needed epilepsy awareness that will get us to a cure.
Give: http://www.calvinsstory.com

Calvin happily eating his first donut

almost perfect day

Sunday was, by my revised definition, an almost perfect day. Almost.

We decided to take a drive because what else is there to do on a cold, windy, icy day with Calvin? I put a lunch together and we headed out on small back roads, past acres of golden pastures fenced in white leading to the Pineland Farms market. Hand-in-hand, Calvin walked quite well with us across the parking lot. Inside the store, his harness tightly in my grasp, he careened down aisles trying to mouth glass meat cases and wooden bakery shelves. Michael picked out a couple of micro brews and a large coffee. “I’ll take Calvin while you go pay, then you take Calvin while I go pee,” I said jovially, as I supported our teetering child, ever minding his giggling bauble head at each corner.

Sometimes when I’m with Calvin I feel like a contestant on one of those stupid game shows where competitors have to carry an egg under their chins or a tray of wine glasses on their heads while performing some other impossible task, hands tied. Never do I have both hands free when I’m with Calvin, unless Michael comes along.

The sunny drive home was warm and pleasant. Since the addition of this third anticonvulsant drug Calvin has seemed to have given up screaming bloody murder in the car and I only had to foil three attempts of staring at the sun. It was mild outside and we passed a group of little kids playing tag-ball in their melting driveway. I half smiled.

By the time we rolled back into town it was lunchtime so we decided to try our luck at eating in public, something we almost never do with Calvin. Once inside the deli, with some effort we wrestled him into a high chair. His small frame appeared giant compared with the infant seated across the room craning her little bird neck to gawk at our shrieking, flapping eight-year-old. Calvin ate his entire lunch, happily, while Michael and I shared bites of a delicious egg-bacon-cheese-tomato-lettuce-mayo-on-toasted-pumpernickel sandwich.

But we had to ditch the joint when Calvin’s flailing and screeching became too much. And his diaper had leaked. So Michael scooped him up, we thanked our cooks and I gathered our things. As Michael buckled Calvin into the car he asked if I’d seen the woman sitting behind me in the deli. I hadn’t. “She gave us a big smile as we left,” he said, and I wondered if he might be tearing up. I wished I’d seen her too.

At home the rest of the day was just as good. We took Rudy for a walk. Again hand-in-hand Calvin walked—willingly—over two blocks toward our destination, a HUGE accomplishment and something he’s never done before. Once there he traipsed happy circles on the AstroTurf, seemingly chasing our shadow, while Rudy fetched a lacrosse ball in the sun.

Back home Michael built a fire and while Calvin played in his johnny-jump-up we watched the remainder of Sunset Blvd. Calvin enjoyed his bath, walked up and down the stairs virtually by himself, gave us tons of hugs and kisses, ate all of his dinner and went to sleep easily. In recounting the day’s events, a smile on my face, I said to Michael, “that was almost a perfect day.” Almost.

If only Calvin didn’t have seizures, didn’t have to take drugs, wasn’t missing that swath of white matter in his brain. If only he could walk by himself, didn’t need to wear diapers and could dress himself. If only he could sit in a chair, read a menu, pick out what he wants to eat and order it. If only he could manage holding a burger, dip fries into ketchup and wipe off his own face. If only he could drink from an open cup and put it back on the table. If only he could converse with his father and me, laugh at jokes and tell us stories. If only he could run and play outside with other kids as I watch from the kitchen window. If only he could walk his dog and do all the other things that most eight-year-olds can do. Then it would—most certainly—have been a perfect day.

Please help promote epilepsy awareness by sharing Calvin's Story.
Give: http://www.calvinscure.com

photo by Michael Kolster

bitter pill

It happened in the bath ... again. The past several seizures that Calvin has suffered have all begun in the tub. This one was very similar to the others—the silence, the twitching, the stiffening, the tremulous convulsions, the vacant staring eyes, his lack of breathing.

I was downstairs removing ash from the wood stove in preparation for building a fire when I heard a faint call from Calvin’s nurse, Bebe. I dropped the metal ash pan on the brick with a sharp clang and sprinted up the stairs. She had him—almost to our bed—in a kind of bear hug, her arms wrapped awkwardly around his thin, stiff body, which was partly draped in a towel. She gently laid him down and I kissed his moist neck tasting the bathwater trickling off slick locks of his hair. “Come on, baby,” I pleaded. Michael joined us and we all caressed Calvin’s quivering body.

As the second-hand approach three minutes Calvin had started coming out of it. I dismissed myself to quickly prepare his evening seizure meds while Bebe and Michael got his diaper and pajamas on. A few moments later I heard Calvin shriek. When I got back upstairs he was howling in obvious pain of some sort, feverishly rubbing his ears and head with a tortuous expression on his face. Could it be a headache? An ear infection? Cramps? Does he need to vomit? Any—all—were possible in the wake of a tonic-clonic (grand mal) seizure. There was no calming him enough to give him his seizure meds, so we dimmed the light, tucked him into our bed and he promptly began to settle, thumb in mouth.

But we had to get those chalky pills in, had no option but to disturb Calvin’s calm. Irritably, he took the first three white dots, all sunk into yogurt, like the dutiful boy that he is. We praised him heartily. The next two and a half sickeningly pink pellets he didn’t swallow, but instead began to cry. I had to tip his head back far enough so the mediciney tincture wouldn’t dribble out of his mouth, yet keep it propped up enough to prevent him from choking. All the while our sweet boy cried bitter tears. I so wanted to join him. Thankfully, he was accepting of a little liquid from the bottle to wash down the dissolving pills. Then we chased them with the last two-and-a-half innocuous looking baby blue tablets plus a few more spoonfuls of yogurt before his eyes became heavy with sleep.

Recently, I’d told Bebe how hard it is to start back at day one after a long seizure-free stint. Yesterday was day forty; today is day one. It’s a bitter pill to swallow, this epilepsy thing, hard not to choke on. It seems no matter how many drugs we dump down our little Calvin’s throat the seizures keep on coming and everyone involved gets sick to their stomachs with pain, suffering, grief, loss and heartache. And, no matter what we do, regrettably, somehow we keep ending up back at day one.

It's astounding what just one share of Calvin's story does to promote epilepsy awareness. Please do so.
Give: http://www.calvinscure.com

beautiful moment

A moment of reflection while walking through the Maine woods near our home (video.)

To view the video click here.

loser

There have been some times in my life when I’ve felt like a bit of a loser. I suppose the feeling came from comparing myself to others, for whatever reason. I’d like to think I’m not alone here.

For example, I didn’t learn how to ride a bike until I was nearly eight, partly because of the thick gravel driveway sloping toward our house that made peddling on it difficult, if not impossible, for beginners. Even so I felt like a chump. I didn’t learn how to swim until I was six or seven, though my older brother Matt had swum his first race at the scrawny age of four. And when I finally joined the swim team I was the only one of the six of us kids who didn’t qualify for the “A” championships. Dud. I belonged to a family of incredible athletes, but it wasn’t looking too good for me.

Furthermore, I didn’t know how to whistle, couldn’t skip, was allergic to cats, sucked at shooting baskets and was known by my siblings as a whiner, even though they were often the catalysts taunting me, hitting me and playing dirty tricks like making me lick uber-hot Chinese mustard off of a toothpick hidden by sesame seeds. My brothers and sister teased me for having a big nose, stringy hair, big butt and a potbelly. I was a nose picker and my eyeteeth came in all crazy—ended up in braces, rubber bands and full on headgear. Nerd.

When I was in grade school I went to my girlfriend Lidia's birthday party at our local bowling alley. I scored a perfect game. Zero. Complete gutter balls. The girl with the best mark unwrapped an oblong box that revealed a shiny gold chain necklace. As the loser, my prize was a pair of pale pink ruffled underwear. I thought it an odd, somewhat humiliating gift, but those feelings were way overshadowed by the fact that I loved that underwear! Wish I had a pair just like it now.

At the same time that I was feeling moments of being a loser I was also coming into my own. I spent a lot of time alone and proudly taught myself how to write cursively when I was just four. I learned that I was a talented illustrator like my brothers Steve and Alan. I could run super fast, was amazing at hide-and-seek, became a top-notch student, was good at making friends and at keeping a secret.

With a colossal amount of stick-to-itivness I learned how to whistle with two fingers louder than anyone I’ve ever heard. I made it to the “A” team excelling in high school and college swimming, was voted most inspirational and team captain, both twice. I became what I thought was an expert cyclist, looping across the college campus as if my bike was an appendage. After college, though some tried to dissuade me, I backpacked through Europe and Turkey for seven months, hooking up with interesting new friends along the way. I eventually took my drawing skill into apparel design at my dream company, Levi Strauss. All this in great part due to the fact that I learned to embrace being a little different, channeled that energy into pure passion, hard work and focus for what I wanted to achieve, and stopped listening to naysayers and doubters. My sister used to always tell me that I could accomplish anything as long as I desired it enough and didn’t give up on my dreams.

So, perhaps I wasn’t as much of a loser as I thought, just needed to find my niche, find what turned me on, meant something to me—like writing this blog. I’ve still got a soft spot in my heart for that skinny little tomboy with the stringy hair. And today, nerds and geeks are some of my most favorite people, as long as they are honest, kind, real, true to themselves and don’t give a rat's ass about what other people think.

Love this drawing by my brother Steve, 1978

joe egg

Two weeks before Calvin’s birth we learned that the lateral ventricles in his brain were enlarged, though no one could tell us why. After a premature emergency cesarean Calvin battled the consequences of cerebral palsy, global hypotonia, slow gastric emptying, ocular and cerebral visual impairments and gross developmental delay. As the days, weeks and months passed our son’s future seemed increasingly bleak to us.

Then, when Calvin was just two he was diagnosed with epilepsy. We had already grappled with immense grief, loss, disappointment and worry over the well being of our child, but the seizures and drugs proved to dwarf everything we had encountered up until that point.

A year or two after scores of seizures and several failed antiepileptic drugs a friend told us about a play at the Mad Horse Theatre in Portland. It was called A Day in the Death of Joe Egg. It claimed to be an extremely black comedy about the struggles of a couple whose only child, Josephine, or Joe, suffered from severe cerebral palsy and “fits”, or rather, epilepsy. Michael and I were slightly dubious about such a sensitive subject being labeled comedic, but we sorely needed a night out on the town and a good laugh. Maybe it would help put our situation in perspective, we thought.

The theater was small, a square stage centered between three sides of tiered seats. As act one began the audience seemed gagged, a few lonely chuckles escaping into the silence—a titter behind us, a muffled snicker cutting the hush of darkness from somewhere down in front. Out of the corner of my eyes I panned the dim house of drawn, sober watchful souls sitting upright and military in their seats, hands clasped hidden in their laps. I wondered how many of us had children like the little girl in the play. She was beautiful and lithe, with long blond hair brushed straight and shining like a sheet of waxed paper, her small still body enfolded awkwardly, slanted in her cumbersome wheelchair. Her slippered feet turned askew in their rests, blue eyes staring off vacantly into the distance. I wondered if the others knew what it was like.

After the first act I breathed deeply and exhaled slowly. It was hard to watch, though validating, and the release of laughter helped to relax my tension.

Then, suddenly, I was shocked into silent tears. Just as the lights were coming up the little blond actress skipped onto the stage announcing the intermission. I swallowed hard. The harsh juxtaposition of what had been a limp, listless child, imprisoned in her wheelchair, so abruptly and unexpectedly come to life in a rush—and with such vigor—then to practically taste the crisply articulated words flowing from her blushing lips, was stunning and bewildering. This is how she should be, I said to myself, this is how all children should be. It’s not how my child is or will ever be. My heart was struck solid by a blow from behind and I wasn’t sure how I’d recover.

But Michael and I both made it through, and changed—forever changed—by the little blond girl in Joe Egg and by our own precious Calvin, no doubt beautifully asleep waiting for us at home.

Originally published in March 2011.

Share: http://www.calvinsstory.com
Give: http://www.calvinscure.com

A day in the Death of Joe Egg

epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease. Yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy research dollars targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medication is no more than a band-aid.

Please share Calvin's story with the world. Help level the playing field and bring us one step closer to a cure.

Share: http://www.calvinsstory.com
Give: http://www.calvinscure.com

photo by Michael Kolster

friday faves - aid of others

A while back Michael and I watched the 1946 film The Best Years of Our Lives. A beautiful black and white classic, it tells the story of three World War II veterans returning home from battle after their long deployment.

One of the soldiers, handsome young Homer, had both of his hands burned off while overseas. Each had been replaced by curved steel hooks, which he employed with great mastery, even striking a single match to light a cigarette.

The film beautifully explores loss, grief, desire, and transformation in a series of poignant scenes. One that deeply moved me was with Homer and his father. After supper, Homer goes upstairs to ready himself for bed. He takes off his coat then somberly calls down to his father saying something akin to “I’m ready, Pop.” Momentarily, his father enters the boy’s room and, in silence, helps Homer take off the leather harness supporting his prosthetic arms. He lays the hooked devices aside then assists his grown son into a pajama top. Homer, barely a man, swallows his pride, keeps his chin up and his eyes averted while his father slowly buttons up the front of his nightshirt. The intermingling of shame, pity, love, helplessness and gratitude are palpable, as the viewer understands that Homer is destined to rely on the aid of others to do simple and intimate things.

Often, when I help my eight-year-old son Calvin with dressing, my heart floods with these same emotions and my mind these same thoughts. Though I feel no shame, I am immensely sorrowful of the great challenges Calvin faces in doing the simplest of tasks. As an example, when I put his shirt over his head Calvin can pull it down over his face but then he needs help putting his arms through the holes. He seems to be improving on these skills—albeit slowly—and for that I am grateful, though I worry one day his development will plateau, or worse yet—and because of his epilepsy—regress.

Loving Calvin with the depth of my soul I would do anything for him, but that doesn’t stave off feelings of helplessness—that no matter what I do and no matter how many hours we toil at any given task—that Calvin will likely remain in a place where he too, will always be reliant on others to provide for his most basic needs. And at night, when my emotions run at their highest, comes a paralyzing dread as debilitating as any, which is my fear of the future and the great unknown it harbors, if perchance I can no longer be there for my boy.

But like the young soldier, my Calvin is loved beyond measure by those closest to him, and so will receive succor even in my absence. And perhaps too, as Homer did for his loved ones, Calvin can inspirit others to undergo a transformation toward selflessness, similar to that of my own.  By seeing Calvin’s desire to succeed in the face of great adversity, always exuding a most pure and humble spirit, I aspire to gain patience, appreciation and acceptance, not only for those who need help but for those who selflessly give of their own.

A version of this was originally published in January 2011.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy: http://www.calvinsstory.com

Give: http://www.calvinscure.com

Calvin with his friends Kim and her daughter Ellis

ronan’s orion

Our boy has a habit of waking up at 4:30 in the morning. I usually find him uncovered and rocking, rubbing his head in his palms. I unhitch the netted safety canopy tented over his bed, step up on the little wooden stool, reach in to drag him up onto his pillow and cover him again. If he wants some, I give him water from his sippy-cup, my left hand cradling his precious head. Then I re-secure the netting and shuffle off to the bathroom before heading back to bed.

On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world. Weird, I know, but that is where my thoughts go—sometimes often.

Last night, while I was doing a quick browse on Facebook I saw a status update by my friend Emily. She said:

Ronan needs your thoughts today, friends. Please send good vibes his way.

Ronan is her toddler (though sorrowfully he can’t toddle) who is dying from Tay-Sachs, a dreadful regressive genetic disorder. He has become blind, is mostly paralyzed and has begun having seizures, all symptoms that at some point in the not-too-distant future will be followed by his death.

I went to sleep last night with the image in my mind of little Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next. I’ll hope to see Orion shining in the sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.

To learn more about Ronan: http://www.ourlittleseal.wordpress.com/
To give to Tay-Sachs research: http://www.ntsad.org/

Ronan

back in the water

Diving into the pool I felt a bit like a huge melon that’s been lobbed into the water, imagining a kind of “kerplunk” as my round, ripening stomach broke the glassy plane. I pulled to the surface, swam and kicked at least fifteen hundred yards—a shy mile—until my face was rosy and hot. It felt good. I repeated this five days a week while I was pregnant with Calvin.

Swimming butterfly was the most fun; my bulging belly like some sort of personal floatation device buoying me, helping me skip across the water effortlessly like an albatross floating on a thermal. During backstroke I’d count acoustic tiles thirty feet high, some water-stained tobacco-rust, others painted black. Then breaststroke. I’d push off the wall streamlined, my head tucked between taught arms until I felt my body slow, then scooped the water hard and threw it back to the sides of my thighs, kicking once like a giant frog before gliding up to breathe.

I wondered if my rocking and sloshing put Calvin to sleep. Wondered, too, what inhaling the fine layer of chlorine that seemed to rest just above the water’s surface—like morning fog over a pond—might be doing to my unborn child who never moved very much or very vigorously in my womb.

After Calvin was born I made several attempts at getting back into the pool. But all I could do was cry salty tears into my goggles, ball up into the fetal position at the end of the lane and hope no one noticed. I’d regain my composure enough to launch myself out of the pool, scurry across the deck and drown my sorrows under a strong, hot, loud shower behind a dismal plastic curtain. And though I tried to return on countless occasions, each attempt was a lesson in futility and a reunion with grief; a bitter reminder of the hopes and dreams I’d had for my child—for our family—that had vanished in the blink of an eye at thirty-two weeks.

Recently, I’ve gotten back in again, after what seems easily like a year and a half away from the water and eight years since enjoying anything close to a routine. It feels good. Healthy. Right. For the amount of time most of my body has had to waste away—save my shoulders and arms from lifting Calvin—I feel much better than I thought I would, feel far younger than my forty-eight years.

The other day, after my second time in the pool while taking a shower, I realized I had brought a little inner tube with me—the one that has developed around my middle! It seemed to buoy me some, not unlike my pregnant belly had so many years ago. I laughed to myself as hot water streamed into my eyes and cascaded down my face. Not tears this time, I thought, and I stood there under the spigot with my head down. Warm, thankful, tired, relaxed and—yes—happy.

photo by Michael Kolster

time to hesitate

The time to hesitate is through.   

 —Jim Morrison 

 

Jim Morrison

depressing?

Recently, my sister and I were talking on the phone, partly about my blog. She told me that I probably didn't want to hear what she was about to say and then went on to mention that several of her friends had stopped reading my blog because they found it too depressing. That depressed me. But then I got to thinking.

While posting something to the blog daily since I began writing it over fifteen months ago I continue to assess its content. Is it too raw? Is it too dull? Too monotonous? Too dark? I usually end up asking Michael first. He reminds me that, although my goal is to promote epilepsy awareness, I write from the heart, I write how it is for me, for Calvin, for our family—no holds barred—and that I shouldn’t worry if it's too depressing for some to read. Then I ask a handful of trusted friends their honest opinions and I generally find consensus; that although at times it's raw—hard to read—it is hopeful, honest, real. But I still try to find ways to sprinkle in some humor, happiness and dreams into my dialog.

In my cyber travels I came across a mommy blog that struck me. It is written by a woman whose 21-year-old brother died from SUDEP: Sudden Unexplained Death in Epilepsy. At the top of the blog is a remarkably beautiful photo of the author with her husband and two young, ostensibly healthy, children frolicking on a lakeside swing set. She writes:

While I sometimes struggle with the challenges of daily living, ultimately I am happy and feel blessed. Meanwhile the Internet seems to be a breeding ground for negativity. There are blogs and social media pages filled with negative judgments, biting opinions, and sad stories.

So the Happy Blogs are my little solution to the daily barrage of negative energy. I write about happy stuff. Sure, icky stuff happens to me and everyone else. But mostly, life is good.

All I could think was that having a brother with epilepsy—even one who died—must be very different than having a child that has epilepsy or some other chronic condition. Being the upbeat, eternal optimist that I am, I too think that life is pretty damn good, but it’s also effing hard, though I never really thought that until Calvin came into my life.

During the holidays a loving friend who has known me since I was in junior high school sent an electronic greeting card of sorts with a photo of him with his wife, kids and grandkids. He mentioned how he has a picture of me and Calvin on his computer desktop and that he prays for Calvin’s health, peace and well-being every time he sees the picture. That brought tears to my eyes. He also mentioned how, in his words, “kids make Christmas especially fun.”

I wrote back to him:

To be honest, having Calvin makes Christmas especially hard, particularly when everyone else is have so much fun with their kids over Santa and presents and school concerts and craft-making and baking—I could go on forever—and we spend the day like any other, supporting him as he tromps around the house, hoping we can prevent a bad fall or a bump on the head and fearing the next seizure. I write this not to make you feel bad but rather to let you into our lives, if only just a little bit more, as I know you love us.

I never heard back from him. I’m just hoping that no news is good news, but I fear my frank email might’ve been hard for him to take.

And then, a reader—a stranger to me—whose son has epilepsy wrote to me recently, the morning after her son had spent the night in the hospital because of a bad cluster of seizures:

So I just want to thank you for all the help you’ve given me, just by being a comrade, even if you don’t realize it. Taking a few minutes each day to read your blog has been my time to just breathe, as that’s all I can do on some days.

Simply reading her message confirmed for me that I'm doing what I need to be doing.

It's true, I do write about some pretty icky stuff in my blog, but it’s the stuff of my life, I just tell it like it is. I guess, if it's too depressing for some, there are probably oodles of happy blogs out there that will make readers feel super-duper, hunky-dory and A-okay, which is fine and dandy with me.

photo by Michael Kolster

life just is

It’s not uncommon for people who meet me and learn of Calvin’s hardships to say, “everything happens for a reason.” I usually try hard to suppress my disdain for what I believe to be an erroneous, though well-intentioned, theory. My response is simply to say that I don’t regard the premise to be true, but rather, that I to choose to construct meaningful outcomes from life’s experiences, much like choosing to see the glass half full instead of half empty.

Another phrase I have heard often over the years is, “life’s not fair.” I never really cared for this assumption either. It has always seemed to me—even as a child—that life is neither fair nor unfair. Life just is.

Some may hold fast to these beliefs to find solace in the presence of suffering, to somehow understand why suffering occurs at all, and to make sense of something so utterly senseless as a profoundly ill and debilitated child. And although I myself may wonder why Calvin is so afflicted—at the same time wishing he were not—I find no comfort in the idea that some greater purpose has been designed that requires it of him. Rather, the knowledge and conveyance of this belief, especially by those who do not know what it is to care for a child with such extensive disorders, honestly turns my stomach.

I have no need for that kind of solace. I need only to be there for Calvin and to put all of my effort into finding a way to lessen or stop his suffering. I could choose to wallow in self-pity over my sick child while trying to console myself with some feeble, perverse notion in an attempt to put it all into some sort of context that explains it away and makes it okay. Instead, I choose to seek out and underscore all of the incredible things that I experience because of Calvin, and simply be content to know that he is who he is, not owing to some deliberate plan. And since life just is—which is okay by me—and while I am here, I will make the most of it as it keeps coming my way.

Originally published in November 2010.
Give: http://www.calvinscure.com

photo by Michael Kolster

cry away

It opens the lungs, washes the countenance, exercises the eyes, and softens down the temper; so cry away.

—Charles Dickens 

 

photo by Michael Kolster

friday faves - sick. lovesick.

Sometimes I get sick of the whole damn thing. It all feels so ludicrous and pathetic while at the same time heart wrenching, tragic and miserable. I am sick of the seizures and the medicine. I get sick of Calvin’s idiosyncrasies; the incessant eye poking and staring at the sun, the relentless yanking off of his glasses, the wretched screaming, the constant drooling. I get sick of him throwing everything on the ground as soon as we give it to him. I get sick of changing diapers. I get sick of his poor balance, of his inability to truly explore his world. I get sick of him trying to bite everything: tables, chairs, magazines, windowsills and windows, the freezer, his shoes, the car, the sink, the water faucet, the hamper, the radiator, the wastebasket, his books and toys, the zipper on his coat, the shutters, the dishwasher, his glasses, his crib. Sick, sick, sick of it all.

And though Michael has helped me begin to understand that I may have some sort of superhuman patience, and the ability to maintain calm vigilance over these things, at times I get so sick of it I just have to scream—not at anyone but at the whole sorry situation. And if Calvin is present he usually starts to giggle, and at that I can do nothing but melt. In an instant all of my feelings of anger, self-pity, annoyance and tension dissolve into doting tenderness and love. For all of his peculiarities and quirks Calvin is a darling. He’s pure through and through, lovely and affectionate. There isn't a cruel or malevolent bone in his body; rather he strives to do his best to please in most any circumstance. I couldn’t ask for a finer son to show me how I can be a better person.

This post was originally published in November 2010. Some things never change.

imagination and expression

The tree which moves some to tears of joy is in the eyes of others only a green thing that stands in the way. Some see nature all ridicule and deformity ... and some scarce see nature at all. But to the eyes of the man of imagination, nature is imagination itself.

—William Blake

One of my best girlfriends, Akiko, flew up Saturday from Manhattan to join us for our epilepsy benefit. She returned the following day and we enjoyed a sunny drive to the airport. We talked about work, friends, relationships, family and this blog. She asked if I had done the drawing for a recent post. I told her that I had and that I used to enjoy drawing a lot and was good at it. I began thinking about all of my creative endeavors over the years: drawing; photography; designing apparel; quilting; and now writing. I told her I’d always liked writing poems and short stories. Some were simple narratives of my childhood that I’d given to family, others were long-ass dirty limericks that brought tears of laughter to their recipients. I went on to say that I’d never enjoyed such a creative passion of expression and imagination as I do now, in writing about life with Calvin.

I’d had a recent conversation with my husband’s colleague, a woman who teaches English at the college. I’d realized while talking with her that since Calvin's birth, but more so since writing the blog, I seem to look closer at nature, at circumstance, at life. I feel more deeply, discern subtleties, linger on images—moments—that before writing I might have missed. No longer do I see a child and simply smile at—or ignore—their playful charm. No. Now, I see art in a child’s hand as she deftly brushes back fine curly locks from her cheeks. Now, I notice melancholy in a woman’s face, her delicate hands smoothing a wind-flapped skirt as if in a dream. I peer into silver puddles and glimpse the looming canopy of a huge oak and wonder, who planted it? No longer do I gaze out my window and simply note the breeze. Instead, I see the shivering leaves that remind me, somehow, of Calvin’s seizures. No longer do I look at the surface of objects, of moments. Rather, I dive deep within them to get a look from the inside out, to feel the vulnerability in things, the raw beauty, the pain, the joy. And then I put it to paper.

“It’s like your paintings of flowers and leaves,” I told my friend. I went on to surmise that before her project she might have appreciated grasses and petals simply for their beauty, for their colorful curtain flanking a familiar dirt path. But by drawing them—studying them closely, choosing which angle at which to sketch, which tool to use—they become more than just a blade of grass or a bud. I went on to imagine, in my own mind, that by her choosing to employ a soft brush, a hard sharp edge or a thick obscure smudge she became one with them. She watched them as they withered on the table, lost their seeds, morphed into something else that she gently brushed onto the floor, perhaps with a feeling of sadness or finality. What, then, had they become? Could it be she blew the hulls from her palm and it meant something?

Since Calvin was born and since writing this blog I realize that life isn’t just happening to me, it is happening in me, and it feels intense, vast, rich and alive. And when I finally put aside my pen and shut down this blog (for inevitably I will) I’ll remain forever deep in my thoughts and moments as much as my thoughts and moments will remain deep within me.

photo by Michael Kolster

one more spin around the sun

Yesterday we celebrated Calvin’s eighth spin around the sun. Michael and I awoke thankful for the fact that we are eight long years past the particular hardship of our son’s birth.

I’d ordered a carrot cake—Calvin’s first real birthday cake—from our town’s bakery, partly because I hadn’t had a piece of the scrumptious one they’d donated to the benefit last Saturday, and partly because I always want to feel some semblance of normalcy in this life with a not-so-normal child.

Calvin came off of the bus with a stack of handmade cards from several of his homeroom classmates. They were folded and stuffed into a backpack since he can’t carry them himself. There was one with red and purple hearts and stars and a drawing of Calvin complete with his thick auburn hair and glasses. Another sported a gold chalice, or trophy, and a football similar to the one he plays with in the bath. Others, drawn in thick felt marker, offered simple wishes for a happy birthday. One, written in heavy, confident pencil read:

HaPPy Brthday Calvin!! hoP you hav lots UV FoN to day. HaPPY wishis aNd lots uv XOXOXOXO

Then there was a blue card from his one-on-one, Mary, that said:

You make me so happy with every little accomplishment. I forget that this is work when I’m with you!

Reading it aloud to Michael my eyes filled with tears.

Calvin came down after his bath looking and sounding chipper, better than he had in days since suffering from a prolonged virus including runny nose, headache (we think) and diarrhea. He’s lost at least a pound in the last several weeks on top of the two-plus pounds he’s lost since starting the Keppra for his seizures. I can count his vertebra like a string of marbles and his shoulder blades are sharp as mini boomerangs. So it felt great that he managed to eat a little dinner along with his eight anticonvulsant pills.

I watched the drugs wash over him until he eventually slumped in his high chair in a daze. I set the cake before him and lit eight candles. One for each pill, I thought. He stared at the flickering flames and took a half-hearted bat at the frosting. Poor kid wasn’t interested in anything about the cake, just wanted to poke his eye. He’d hit a chemical wall—a wall of sedative drugs—and appeared as if he’d melt right into the frosting and dripping wax.

I brushed his teeth before Michael carried him up to bed. The candles were still aglow as I peered down at the happy little cake adorned with tiny orange and green frosting carrots. Alone in the room I took a deep breath, leaned down and, as I blew out Calvin’s candles, made a wish that he would one day soon grow out of his epilepsy and be rid of both the seizures and the drugs.

After dinner Michael and I had a piece of the cake as if it were any other—no balloons, no happy birthday song,  no unwrapping of gifts in shiny paper, no fanfare; only fierce birthday wishes for our sweet boy, who hasn’t a clue of the significance that he’s made it one more spin around the sun.

photo by Michael Kolster

moon of my dreams

 Moon of my dreams

longing

Moon on my tongue
dissolving

Moon in my womb
weighing

Moon in my arms
loving

Moon at my breast
suckling

Moon in my cupped palms
kissing

Moon in my eye
perceiving

Moon at my brow
touching

Moon in my heart
aching

Moon in my soul
being

Moon of my dreams

Calvin

In honor of Calvin's eighth spin around the world—today—please donate to cure epilepsy. 

http://www.calvinscure.com

greased watermelon

Our coach lobs the large, heavy ovoid melon into the pool, its ragged zebra stripes dissolving from dark green into avocado or lime like a chameleon or some incognito fruit. It’s greased like a pig, thick swathes of whitish Crisco smeared over its rotund form rendering it nearly impossible to seize.

The orb kerplunks into the water descending below the glossy surface toward the white sandpapery bottom with its shiny black tiled stripes that bend like a fork into the deep end. For a moment the fruit is suspended before slowly making its way back up. Just then, an attempt to nab it is thwarted by its own greasy sheath and it is propelled, like a tiddlywink, from the suitor's grasp.

Skinny kids with puffed up cheeks and squinting eyes swim like frogs toward the melon, tiny bubbles escaping from their lips. It looks like a dreamscape, like the ones in which I can breathe underwater, can drink the liquid into my lungs as if it were oxygen. Wavy patterns of squiggly light line the pool’s basin and the glowing skin of a hundred gangly arms and legs appear as a sparkling school of giraffe fish. Each of the team’s members remains in hot pursuit of the semi-buoyant fruit.

At long last one of the older swimmers is able to hug the melon to his slick chest and kick with all his might underwater to the opposing team’s end and plop it into the gutter for a gasping win. Usually, the melon splits open into a watery gush of red, green and specks of black to be eaten by all.

Somehow, like many things since Calvin’s epilepsy diagnosis, this fond memory of playing greased watermelon at my childhood community pool reminds me—oddly—of his seizures. I think of how difficult, if not impossible, the seizures are to get hold of, how just when we think we’ve captured them they get away. I think about the melon’s jagged stripes, like lightening bolts or zigzaggy brain waves. I imagine that melon as if it were an egg or Calvin’s head—like Humpty Dumpty—cracking open never to be put back together again.

But it’s only a fleeting comparison and somehow not disturbing to me at all. Must be because these memories of hot blue summer days, gleeful screams, splashing bodies, inspirational cheers and side-splitting laughter bring me happiness. These images spark a warm smile thinking about paddling around amongst all of my friends like a bunch of tadpoles. The memory of these moments can never be ruined, never be taken away by anything, not even Calvin’s goddamn unrelenting seizures. That’s the beauty and power of the dreams of childhood days, of joyful friendships, sportsmanship and love ... and of a silly, greased-up watermelon drifting through the water like some goofy, slow-mo Mel Brook's asteroid. But it is too bad my little Calvin will never get to do it.

On this, the second to last day of our annual cure epilepsy benefit, if you haven't done so already, please open your hearts and minds and donate to crucial epilepsy research. Join the team that is going to catch this elusive greased watermelon, going to blow it clean and clear out of the water. http://www.calvinscure.com

bonappetit.com

join the ranks

Nearly one hundred ravenous guests dined on uber-fresh maki rolls, salmon lox and cream cheese, fresh cheesy pizza, amazing Mediterranean munchies, mini savory quiches and piles of the best chips, salsa and guacamole this side of the Mississippi before moving on to homemade chocolates, the worlds best carrot cake and the most sinfully delicious profiteroles you can imagine.

Yes, a good time was had by all at last night’s fourth annual cure epilepsy benefit. We were all treated to live music by two talented local bands alongside an open bar serving beer, wine and bubbly water. All of the aforementioned were donated—the food, the drink, the bartender’s and musicians’ time, the help from my friends setting up and breaking down the joint.

To top it off, Michael’s parents flew in from Florida and surprised us both yesterday afternoon. They had me in complete tears. A couple of friends even came up from New York. I said to Michael that it felt like a grange hall wedding, looking out over a gaggle of some of my most favorite people crowding the warm, wood-paneled barn. My father-in-law even wore his shiny red rubber clown nose, having not done so at a gathering since Michael and I were married.

With only a few days left in this year’s campaign we’ve raised close to our $15,000 goal. We did it with the kind and generous support from all those who attended the event and many other benevolent spirits from both near and far. My ambition is to exceed that goal and we can do it, but only with your help.

Join the ranks—the superheroes—and please give what you can to epilepsy research on behalf of Calvin’s eighth spin around the sun (no small accomplishment) and the fifty million people and their families who suffer from this lethal, stigmatized, neglected, trivialized and grossly under-funded disorder. http://www.calvinscure.com

Superheroes Martin Mackey, (me), Jen Baldwin and Maura Bannon

do the math

On this, the day of our 4th annual CURE epilepsy benefit, this is all I have to share. You do the math:

National Institute of Health Annual Funding 2010: 

Affliction:                  Funding $$    Annual deaths:

                                        (in millions):

HIV/AIDS                     $3,160                18,000

Breast Cancer               $778                   41,000

Alzheimer's Disease    $458                   75,000

Epilepsy                     $137                  50,000

Please help level the playing field and donate to critical epilepsy research at: http://www.calvinscure.com

photo by Michael Kolster

friday faves - don't mess with this chick

I always wear a backpack, messenger bag or a satchel with a long strap over my head and shoulder. I never carry a purse. At first it was merely my preference, but now I make a habit of it.

One day, back when I was living in San Francisco, I was walking from work to the bus. I strolled along the Embarcadero, then veered onto a grassy path, which meandered through an office complex. Suddenly, a man rushed up behind me—I felt the air he pushed—and he swiftly hoisted my black knit skirt high above my waist.

Incredulous, I stopped dead in my tracks, my black leather zip-up high-heeled boots planted firmly on the ground, feet slightly apart, my wide backpack strap secured diagonally across my chest. I calmly asked him his name and, as if I had approached him in a smokey bar, he told me with a sleazy air of confidence. Then I asked to see his driver’s license, which seemed to snap him out of his illusion and into the reality of his crime. Simultaneously, I noticed a group of onlookers standing behind a large, full-length window a few feet away. The guy bolted so I lunged at him and, with one hand, snagged a belt loop on his navy corduroys and wrung the back of his shirt collar with the other. “Call 911!” I screamed at the bystanders, certain they could hear me through the thick glass.

The culprit freed himself, tearing his shirt collar and ripping off the belt loop, then he sailed down the path. I darted after him. As the villain approached the main street spectators started emerging from their offices. He turned the corner—out of my sight for a second—but was blocked by a young man carrying a portfolio. The crook began to act like nothing had happened, but all the while I was yelling the details of his offense to an attentive crowd that had formed. I positioned myself in front of him on the sidewalk to prevent his escape. As he continued to deny his crime a woman appeared and exclaimed, “he did it! I saw the whole thing and the police are on their way!” At that moment he tried to get past me, but I pushed his shoulders and shoved his chest hard, pinning him between the cars and another man who had stepped in to assist me. I continued to preach to the crowd, “if this guy gets away with this he’s gonna to do worse things” and then, to my assailant, “don’t mess with this chick.” He made a final run for it just as the cops peeled around the corner and cuffed him. Fortunately, I had been hands-free because of my backpack, but I couldn't have overcome him without the help of a lot of great people—all strangers to me, and yet my friends.

I never met with another nasty foe until almost six years ago. That was when Calvin was diagnosed with epilepsy when he was just two years old. At first, I had no idea what we were up against, but I soon learned that epilepsy would become my greatest adversary, and Calvin's too.

When it comes to finding a cure for epilepsy, this most violent offender, I cannot do it alone, not even in those kick-ass boots. Calvin and I need the help of others, of you—our friends—and of strangers. That's why I am writing the blog. It is why I am asking you to donate to epilepsy research. You will be nothing less than a superhero—Calvin’s superhero—and you’ll be bringing us one step closer to a cure for epilepsy, our only hope for arresting this hateful disorder.

Please donate to epilepsy research at: http://www.calvinscure.com

A version of this post was published in February 2011.

drawing by Christy Shake

imagine and act

Butterflies are beginning to flitter around in my stomach, though I shouldn’t be nervous; I’ve thrown parties for over a hundred people before. I just hope everything comes off okay for guests at Saturday night’s benefit. I imagine it will.

My husband and I started throwing this party four years ago in honor of Calvin’s birthday. We invited friends into our home and served food right out of our kitchen, and the kitchens of a few close friends. In turn we raise funds, from guests and friends worldwide, toward a cure for epilepsy, the awful foe that has wreaked havoc on our lives, on Calvin’s little brain, and on fifty million people and their families.

Epilepsy has crushed us in a way I never could have imagined. The relentless seizures and mind-numbing drugs have brought us to our knees. We have few options. One is to sit by and watch our son suffer the effects. He’s just a little kid and epilepsy is a huge monster to battle with few resources to do so. The other option is to take action, to try and change the landscape of this trivialized, neglected, lethal disorder. I like to imagine obliterating it, blowing it the hell out of the water.

So we, the underdogs, are waging a war against this fiend that must be won. So far this year we have already raised $12,000 with the help of tens of generous donors and one substantial grant. Thank you! My goal is to raise between $15,000 and $20,000 during this year's campaign. Funding for epilepsy research is paltry at best because of its history of fear, stigma, shame and lack of a celebrity advocate. I aim to change that with your help.

So, dear readers—friends—I am asking you very personally; my family; my former swim teammates from Phantom Lake, Sammamish High, B.E.S.T, University of Washington and Central Washington University; my former teachers and coaches; my Sammamish High School classmates; my college alumni; my friends and neighbors from Coffin School and Bowdoin College, San Francisco, Seattle, Bellevue and Maine; please come off of the sidelines and give what you can to epilepsy research. Know that I am thinking of you and eagerly waiting to hear your voice of support.

Most of you cannot know how it is to have a child with epilepsy, but let me just ask you to imagine—and act.

Please donate now to epilepsy research at: http://www.calvinscure.com

photo by Michael Kolster