halloween

Every Halloween I am reminded of past ones: of the one when Calvin endured a painful circumcision meant to alleviate frequent urinary tract infections that had spiked fevers triggering seizures; of the one where a nurse mistakenly gave Calvin the wrong dose (too much) of seizure medicine, of the one when he suffered a bad seizure, of the one when he had twenty-eight leads glued to his head for a 72-hour EEG; of the ones when he’d cry and scream so much that I’d greet trick-or-treaters with red eyes and black tears streaming down my face. I didn’t care if they saw, didn't care if it scared them, couldn't have helped it anyway.

Of late, Calvin seems to be less stubborn walking where I want him to walk. He did so well on one recent occasion that it made me think that, perhaps, I could take him trick-or-treating—for the first time—to a handful of nearby houses. I'd mentioned as much to our neighbor Woody. But then, hearing myself say it, I realized I wouldn't be doing it for Calvin, I'd be doing it for myself—a bad reason to put the poor kid through getting dressed up and out in the cold when he can't hold a bag, likely can't eat the candy and has no concept of the holiday to begin with.

This morning I'd meant to dress him in his sparkly Halloween blue jeans for school, the ones with the spiders and rhinestones, along with his jack-o-lantern t-shirt. But, in my rush to get his lunch made, his breakfast eaten and his diaper changed before loading him into the car to drive to his doctor's appointment to talk about his ongoing gastric distress, I forgot that today is Halloween.

So, I'll leave you with some photos of past Halloweens, sparing you the haunting images of the moments that were anything but a treat.

sweethearts

I’ve watched the girls across the street grow up, seen snippets of them walking to the bus on autumn mornings in their knit wool caps, leggings and rain boots. I’ve seen them lean into thick lawns pushing a stubborn mower. I've eyed them raking leaves with their mom and dad who’ve been to parties at our house.

From our downstairs bathroom window I sit on the toilet lid and watch the world go by, my arms wrapped around Calvin’s waist, his arm hooked behind my head in a kind of hug, yanking my hair—always yanking my hair. He bangs on the shutters likes he’s done since he was two, since he was old enough to stand there; my hands—then and now—grasp the harness around his chest just in case he falls.

I peer out the window and watch the seasons turn like pages in a book. In autumn, the hydrangea blushes mauve mirroring the one across the street in the girls’ front yard. Booted students trudge past in pairs on their way to their college courses. In winter, ice beads up on the hydrangea’s naked branches which shiver in the bitter wind. In late spring I watch buds emerge from joints in its thin speckled pear-skin bark, each shoot eventually forming into a branch of its own. In summer the boughs droop with popcorn-ball blossoms. Rudy lays like the Sphinx unleashed in the grass just beyond the shrub, sometimes all day long.

I’ve seen the girls go from riding trikes to bikes to aluminum scooters. Now, balancing on skate boards, their blond hair billows behind their backs like golden waterfalls in wind. The younger has eyes like Cleopatra, the eldest, that of a lake, and their long slender bodies remind me of saplings, and of their mother.

Now and then I see a boy come to visit after school and, as I clutch Calvin, my palm resting over his belly, I’m reminded of my first sweetheart. He was white-blond like so many swimmers I knew, and he played the trumpet like a pro. His parents were very cool, and they seemed to love me though I was two years older than their boy, and in high school.

As I reminisce, gazing out the window into the fading light, I feel a sting in my heart knowing Calvin will likely never be that boy to anyone. He won't send love notes on folded pieces of paper. He won't walk a sweetheart home from school. He won't ask his crush to a dance, nor will he likely dance at all. He won't kiss his darling while in the crook of a tree or in the woods or in a gentle river that bends and flows to the sea. He won't be anyone's sweetheart, not really, not as long as the seizures persist and the drugs dissolve his potential like these thoughts dissolving my heart.

zombies, nightmares, monsters and ghosts

photos by Michael Kolster and Christy Shake

telling

Sundays without Michael can be long. Yesterday could have been one of those days if not for Calvin’s willingness to walk the neighborhood sidewalks, if not for his hour-long nap and for the annual Pumpkin Sunday my friend Lauren hosted in her yard.

We arrived late, her neighbors and friends already seated around the picnic table well into carving their orange gourds. Lauren immediately offered to take Calvin off of my hands so I could partake of her homemade pumpkin soup and caramel corn. While sipping the savory bisque from a mug I got to talking with one of the other guests, a nice woman perhaps Lauren’s age. I asked her how she knew our host, where she lived, what she spent her time doing and if she had any children. She told me about her daughter and young grandchild who, she explained, since they live nearby she spends a lot of time with. “It’s so important,” she said emphatically, drawing out the "o" in "so." I silently winced, knowing I will never feel the joy of having grandchildren, then I quickly changed the subject. With one eye on Calvin and his new steward, I watched as Lauren struggled to maneuver my impatient, uncoordinated, unbalanced boy, and was pleased, though not surprised, to see her manage him with such grace.

The visit was short. I relieved Lauren and took Calvin into the kitchen to snag some soup-to-go from the pot on the stove. As we descended the back-deck stairs a white-haired gentleman held out his hand for Calvin to take, assisting my son down each step. At that moment I regretted having to leave, wished I’d had a chance to visit with the man, perhaps give him a hug in return for his kind gesture. I wondered if I'd see him again and if I'd remember his face.

After loading Calvin into the car where he sat patiently, knowing we were headed home, my friend Tahnthawan, her husband Mark and their redheaded boy Oscar, who's half Calvin's age, came to send us off. My belly pressed against Tahnthawan’s pregnant one, a January baby on the way, as we hugged goodbye. Oscar squeezed inside the open car door to talk to Calvin, and I noticed Calvin turn to regard him, something in years past he’d never have done. Oscar wasn’t shy and told Calvin about the scary house he’d been to the night before, showed him his freshly carved pumpkin then sweetly waved goodbye. It was the kind of interaction I'd seen no more than a handful of times before and, for its sheer rarity and warmth, it meant the world to me.

Before we’d left, Tahnthawan had made a snapshot with her phone. The photo is telling, and I’ll cherish it for the memory of its abundant kindness and love.

Oscar, Lauren, me and Calvin as taken by Tahnthawan

almost free

Today, Calvin did something that he’s never done before: he walked the equivalent of about two blocks in our neighborhood, exhibiting only the very slightest stubbornness as we began. In his new puffy winter jacket, which nearly matched some of the leaves still dangling from the trees, we set off down the sidewalk, his hand in mine. The late morning sun beat down pleasantly upon us, its angle not enough of a distraction to impede Calvin’s progress. At Woody’s we stopped and I helped Calvin ring his bell. I wonder if I can take Calvin trick-or-treating this year? I thought, as we waited for Woody to appear. But Woody wasn’t home, so I decided to see if Calvin would walk a little further.

Calvin pigeon-toeing, we walked past Mike’s house to the corner, then crossed with a group of college students and their parents heading toward a weekend event at the fields. Once on the other side we turned to head back, stomping on acorns and drifts of pine needles blanketing the asphalt path. “You’re doing so great!” I exclaimed, as we trudged slowly past Jill’s wilting phlox and tangled tomatoes, then by the Ferdinand’s hydrangea with its sagging blush puffs just low enough for Calvin to bop with his free hand. From there it seemed Calvin recognized our house, so we crossed back over and he let go of my hand the rest of the way to the car as I held on tightly to his harness. “Mama’s so proud of you,” I told him, giving him hugs and kisses next to a glad smile.

For a moment, walking hand-in-hand down the street with a willing child, I felt almost normal, felt almost free.

it gets harder

They say it gets easier. They’re wrong. It gets harder. The seizures become more frequent. First every six weeks, then every two weeks, every ten days, every week, twice a week, twice in a day. Anti-seizure drugs continue to go up and up and up. I remember hating to open the tiny blue-white and orange-white capsules to sprinkle the mysterious white powder into his yogurt. If he took a breath he'd inhale the fine granules making him cough and grimace. He is so dutiful. He doesn’t want to take it. I tell him it is his medicine and it will make him feel better. Maybe it actually makes him feel worse. He can't tell me. I say, “take one bite for Mama,” and he does. All the while it feels like some sort of evil concoction. Who knows what it does to his brain? The chemists don’t even know exactly how or why they work—if they work. Then there are the tablets: the small square ones with rounded corners; the ones with GX 52 embossed on one side; the white oval ones as easy to break as pixie sticks. The blue ones with the white centers hard as brick, which I cut by pressing centered on the pill cutter's blade. He used to refuse his yogurt and I can guess why. He knew. These drugs, they make him feel sick inside, perhaps even sad at times, and he cannot be released. It's like we are poisoning our own little kid. He's only nine, was two when we hid the first ones in his food. Thousands of pills dissolving into his gut, into his brain. And yet, the seizures persist.

July 2006

one bird, two stones

My little birdie who, when he’s feeling best, chirps and warbles happily as he flits around the house with one of us always in tow. He’s a handsome boy with smooth, fair skin, a mass of auburn hair, large blue eyes and a few freckles, like beauty marks, sprinkled here and there. He’s quite small for his age, and skinny, his rib cage reminding me of that of a quail or pheasant, his little heart beating against my palm.

My little birdie, yesterday, was struck with two stones—two seizures—one in the early morning, hours before dawn, the other at dinner time. It has been years since he’s suffered two seizures in the same day, and my heart sunk like a stone in a cold river.

I feel like time is getting away from me, each dose of chalky chemicals packed neatly into tiny colored pills tethering him to a life of nausea, headaches, dizziness, preventing him from spreading his wings to soar.

And so I search far and wide for a little seed, a little green flower, for my birdie to nibble, that perhaps will take the sting and stun out of the seizures and the drugs, perhaps will make him want to sing forever.

He's sleeping now, all curled up in a downy fluff. I hope he dreams of blue skies and gossamer clouds.

sinking feeling

I’ve had this sinking feeling in my gut for years: that things would change, and for the worse.

Three in the morning—again—and I hear him gasp for air. Lights on, I run and detach the netted safety canopy over his bed and toss it aside. My boy’s face is pale, his exposed back cool to the touch. His wide-open eyes do not acknowledge me, nor does he turn to my voice. “He had another seizure,” I call to Michael, who comes quickly and sees what I do: the tongue click and swallow, the feeble attempts at sucking his thumb, the fixed, catatonic nature of his typically pendulous eyes, the sparse whimpers.

Shuddering and shivering, seizure-gas palpably bubbles uncomfortably through Calvin’s gut. Michael gathers him from his bed, our child folding in half like a rag doll full of sand, and carries him into ours. For a time, he writhes and twitches, then finally reaches his arms around my neck pulling my head into his before drifting off to sleep.

I don’t know how long the seizure lasted; they’re nearly silent now. I dread these the most. I fear he’ll have one and never wake up, his face smashed into the pillow, the mattress, the comforter. They’re almost weekly now—the ones I detect. Gone are the thirty-five, forty-seven, even seventy-eight day stints between them. And, though he’s down to two medicines, he’s on super high doses of both, high enough to knock any adult on their ass.

Earlier we’d dined with Luke and Sarah whose son is so like Calvin, save the seizures. I’d given Jacob a bedtime puppet show with his well-loved Monkey and plush blue Pup. In return he’d given me the biggest smile I’d ever seen him sport. I’d glanced at the time to see it was well past seven, relieved to know that Calvin hadn’t had a seizure, even though I’d more than half expected one. Our friends asked about the medical marijuana. I told them that we haven’t yet found a strain high enough in cannabidiol (CBD) and low enough in THC. I went on to mention hemp-seed oil which, from what I've read, is nearly all CBD, though not rich in it. “Why not try that?” Luke asked, and I considered the seizures, the worry, the dread, the pharmaceutical side effects and unknowns and inefficacy and I thought to myself, what’ve we got to lose? Perhaps this sinking feeling in my gut.

down and out in the land of milk and honey

Several years back my husband Michael and I faced what could have become pretty scary circumstances. He was going up for tenure as a college professor, which most in the world of academia know can be filled with uncertainty. It was 2008, the year the economy tanked. He’d sent out over a dozen applications for jobs at other colleges and universities in case his tenure was denied, but many of those institutions collapsed their searches due to lack of resources. We knew there was a real possibility that he’d find himself without a job in a time of serious economic uncertainty. We also understood that, if that were to happen, our disabled son’s preexisting conditions could render him uninsurable or, at the very least, burden us with huge premiums and lifetime caps. In addition, the costs of Calvin’s medical care, (his antiepileptic drugs and other prescriptions alone totaling thousands of dollars per month), could easily have ruined us. Thankfully, Michael was awarded tenure and we dodged that bullet.

Recently, I’ve been reading and hearing about the poor people who will be left without affordable health care insurance. Currently, 26 states—all with Republican governors or Republican-controlled legislatures—have thus far declined Medicaid expansion, something not intended in the original drafting of the health care law. But, under a U.S. Supreme Court ruling on the Affordable Care Act (aka Obamacare) in June 2012, the federal government was barred from mandating states to enact Medicaid expansions. As a result, an insurance coverage gap currently exists where millions of people making less than $11,500 per year ($23,500 for a family of four) will have too much income to qualify for Medicaid but not enough to receive federal subsidies when purchasing insurance on a state-run health exchange. This leaves the health care situation of millions of uninsured people unchanged, including a disproportionate 60 percent of the uninsured working poor and 68 percent of uninsured African-Americans and single mothers.

Down and out and uninsured in the land of milk and honey? I wonder if these governors and legislators would be up for trading places with some of their disenfranchised millions, if only for a day.

shout-out

I want to share with you all a much-appreciated shout-out received today from my friend of many years, Sofia. We met while working at Levi Strauss in San Francisco where I was a designer and she a fabric (fwabic!) guru. She'd come from Manhattan to try San Francisco on for size, but it was simply too small, even for her tiny self. Alas, she lasted but a year on the west coast before heading back to the Big Apple, which we both adore. We've stayed in touch these fifteen years, I've visited her in New York along with our other Levi's friend, The Yee, two of the best homies a girl could ever have. Thanks Sofia. Say hi to the Wax.

Shake!

Every time I read a post, which I do religiously, I always want to write to you and say—something.  What that something is I don't often know, almost never in fact. I rack my brain trying to come up with some tiny bit of wisdom or something to cheer you on as you struggle thru this endless barrage of drugs and diets with the ultimate goal of simply helping your child. As a mother my heart just breaks.
 

I know i can't say or do or write anything to change things.
 

So I'll just say that I think of you and Calvin and Michael with every post. They do not go unheard or unread, and with each battle you fight there is a huge fan cheering for you all.

xx
sw

Sofia and The Yee snowshoeing in Maine

a little weed

Having not had much of a history with it, in the year leading up to my father’s death during his prolonged battle with cancer, I smoked a little weed nearly every night. It relaxed me, lifted the load a bit. At times it helped my mind wander to more pleasant thoughts, while at others it allowed me to sink into my grief: something I found essential to coping with the gradual loss of him. He’d been fighting the disease for years, chasing it with regular bouts of chemotherapy which wasted him away by the pound until he was little more than a six-foot-four rack of bones. Near the end, to help alleviate his pain, he was high—or should I say low—on morphine much of the time. I barely recognized him, his eyes like black saucers staring into oblivion, his skin bland and puffy, his countenance flat. I'd recommended to my mother that dad try eating some weed to help relieve his pain and nausea and, surprisingly, she'd considered it, though he died before we had a chance to try.

When I smoked pot I never felt dizzy or headachy or nauseous. I had no trouble with coordination or balance, no double-vision, no vertigo, no tingling, no pain, no weakness, shortness of breath or loss of appetite. I wasn’t aggressive or agitated or irritable or anxious. I was simply relaxed and perhaps, at times, a little sleepy. And when I stopped smoking it after my father died, I suffered zero withdrawal.

Since eliminating one of Calvin’s three antiepileptic medications, rufinamide (Banzel)—one that didn’t appear to be effective and was causing him extreme hyperactivity—he’s had an increase in seizures to the point of occurring nearly every week. A relatively new drug, rufinamide was studied on a small group of children with Lennox Gasteau Syndrome (LGS) so its addictive nature remains unclear. But after its elimination, when Calvin suffered his first nighttime seizures in years—back to back—I panicked and increased one of his other two meds hoping to keep the seizures at bay. So far we’ve seen no benefit, rather a child who is bouncing off of the walls seemingly due to the increase in benzodiazepine (clobazam).

If the seizures don’t abate, we have three choices. We can do nothing and hope they don’t worsen, which is unlikely since epilepsy is a progressive disorder. We can add a third drug back into Calvin's regimen, which will most assuredly cause him to suffer some combination of worsening headaches, dizziness, gait ataxia, double vision, blurred vision, fatigue, vertigo, tremor, somnolence, aggression, agitation, hallucination, insomnia, psychotic disorder and pruritus, to name a few. Or, we can make good in our quest to find the right strain of medical marijuana for our little lamb, one that has a high cannabidiol (CBD) content and a low tetrahydrocannabinol (THC) content so that he won't get high. But if we choose that route, because of federal law we'll find ourselves trapped within the borders of the state of Maine living in fear of any future diehard administration that might sweep in and outlaw its use. If any tincture of this plant were to reduce or control Calvin’s seizures to the extent we could lessen or eliminate his pharmaceuticals—like it did for Charlotte Figi—if it were taken away Calvin could suffer a prolonged and lethal seizure.

So, we remain boxed in by seizures, shackled by pharmaceuticals and crippled by priggish, deceptive, propagandized laws about medical marijuana—a plant known to save the lives of children who have catastrophic epilepsies and shows evidence in helping conditions such as autism, arthritis, cancer, Alzheimer's, Parkinson's, MS, migraine and diabetes. So you can see why I'm determined to help change this harsh landscape which is epilepsy. All it might take is a little weed.

Dr. Sanjay Gupta joins Josh Stanley at the Realm of Caring in Colorado

the joy of giving

Never look down on anybody unless you're helping them up.

—Jesse Jackson

If you cannot view the video below click here.

loathing

As if some loony in a Stephen King novel, I raised the spade above my head and slammed it down hard in a fit of rage. Its wooden shaft vibrated in my hands though it didn’t break. Rudy looked at me curiously but without alarm. Across the freshly cut lawn the sun cast long shadows through the trees announcing the clench of autumn and the coming close of day. It had been a glorious one, the kind of day that, because I didn’t fully take advantage of it, stabs me in the gut with regret, worry, want: a spotless sky, a light breeze, an endlessly warm sun. Where did the day go? And my heart sunk into my heels at the thought of time wasted.

Earlier, I’d wanted to reach through the phone and strangle her: the perky woman announcing that I’d qualified for a one-hundred dollar gift certificate. I’d cut her off with a stern voice asking her to take me off of her list, that I had a chronically ill child and that—. The line went dead without as much as a thank you or goodbye. “F**K OFF!” I screamed into the phone, my face hot, my nerves frazzled. It’d been the second robocall of the day and had followed two other automated calls about upcoming doctor’s appointments plus a woman phoning about medical insurance.

On the way to greet Calvin’s bus I stepped in dog shit that, of recent, Rudy scatters all over the yard, deck and driveway in little chunks nearly impossible to see before you’re standing in it. Calvin got off the bus a bit red in the face. Mary said he’d been super hyper all day and hadn’t pooped. All I could do was think, he’s gonna have a seizure. He shrieked for several hours then had a messy blowout in his pants. A shit-covered piece of grape escaped his diaper and landed on the hallway floor. I had to pick it up with my bare hands so Rudy wouldn't try to eat it. Loose stool smeared down Calvin's thigh, and he squirmed and shrieked like mad making it difficult to clean him up. I felt myself spiraling into that dark place that I hate going, powerless against its gravity. My view narrowed to black and at that moment I felt lost and trapped, haggard and weary, tense and bothered, worried and alone and beaten. But worst of all, in that splinter of a moment, I felt loathing for my child.

friday faves - 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; the odds were against us. I knew in part because we were friends with another swimmer family whose son had some sort of chronic kidney condition. I’m not sure if he might have been born missing one kidney, 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 mentally 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.

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, the drugs. I’ll never see him hit 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 in the water, or churn it beneath him, like an ox pulling 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 once in a while, 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.

me with my five older siblings, circa 1965

time after time

My kind friend Tim sent me this version of a Cyndi Lauper song and said:

had me thinking of you and Calvin. Keep up the fine work.

As I listened to the beautiful words that, indeed, made me think of being with Calvin, I couldn't stop from crying.

august

august
smiles on us
i hear him
chirp and squeal
at simple
 little
things

august
holds us
his warm lithe arms
draped like
ribbons of silk
around our 
necks

august
sees us
his eyes, his soul

as deep, calm and

vast as the
swelling
sea

august

knows us

hears us, feels us
senses us

our every move

vibrates his

being

august
leaves us
his smile, his voice
 forever in

our minds and

in our
hearts

August Chazan-Gabbard, 1999-2013

save a life (video)

Watch this video to the end and you just might be able to save a life. You'll have the knowledge to educate others about the remarkable effects of medical marijuana for chronic conditions such as medically refractory epilepsy. With this knowledge, you'll be able to help move us out of the dark ages of fear and false propaganda to an age of enlightenment where a mere plant can do what pharmaceuticals cannot, and without the heinous side effects.

Please share this with others. It's truly a matter of life or death for some children with catastrophic epilepsy and perhaps for people battling cancer, Alzheimer's, Parkinson's, PTSD, migraine, depression, arthritis, heart disease, ALS, MS and diabetes.

Thank you Josh Stanley, your brothers and the Realm of Caring for all that you do. Please come to Maine soon.

If you cannot view the video below, you can watch it on You Tube here.

the accident of birth

Fire in the stove, music on the stereo, lights turned low, two ice cubes and a Sunday bourbon in my glass. While chopping up chicken thighs I arrange thoughts for Monday’s blog post in my head:

the accident of birth, our wise senator once said. so very fortunate. what a sweet boy we have. we made a good person. damned shutdown. don’t they care about anyone but themselves? shameful ruse. massive egos. greed. so many poor and suffering. why can’t we all just take care of each other? what’s the big deal? the accident of birth. so many cold and hungry at the whim of the powerful, wealthy and corrupt. cowards. puppets. our handsome boy. how i worry so. i feel it coming. dark circles under his eyes today. yet so very fortunate.

Not yet five o’clock and Michael calls from the top of the stairs, “Christy!” and I know it is another seizure in the bath. I leap up the flight to see him cradling our boy’s head in the tub, Calvin’s face beet red with the look of terror or surprise. Michael grabs Calvin under his armpits. I wrap mine around his knees and they buckle and knock like a couple of crooked boughs. Lifting his naked body from the basin, water cascades down his limbs, and we rush him to our bedroom, bathwater dripping in our wake. On the way I grab Calvin’s towel from the back of his door and spread it out on our bed. His face is sallow, crimson and steel. Slick locks of hair drape like kelp across his forehead. With eyes wide open and fixed he is breathless and I kiss his neck hoping I can snap him out of the seizure’s grip.

It’s day eleven. Calvin has had nearly half that number of seizures within a month. I wonder if at some point they’ll burn out of control into scores. I think about the children whose parents must choose between seizure medication and food. I think about those who go bankrupt because of epilepsy, because of illness. I think about some of those in power who haven’t the faintest idea what it is to be in fear of losing a job, a house, an entire life-savings, then of those living paycheck to paycheck: good people, honest people, hard working people, loving, compassionate, generous people.

The accident of birth: it’s in great part why I have what I have, why we have what we have. It’s why Calvin has what he has: the dark circles under his eyes, the seizures, the meds. Why can’t we all just take care of each other? What do they fear? Trading empathy for greed. Why such contempt? Do they deem some children deserving and others not? Woe, the accident of birth.

words to live by

In going through various piles on my desk I came across an old birthday card that friends had given to us for Calvin, our boy who cannot read and has no concept of what a birthday is. The front of the small card has a simple yet elegant illustration of a canoe with paddles. The quote above it reads:

Live in the sunshine, swim the sea, drink the wild air ...

—Ralph Waldo Emerson

Inside, the inscription says to enjoy the good life, followed by a handwritten message:

We hope Calvin lives and feels many of these things in his next year. Happy Birthday to you all. J & D

I recall reading this for the first time and weeping. Words to live by ... all of them. No doubt this one's a keeper.

photo by Michael Kolster

another round

Friday morning I sat and answered another round of questions from the second graders who Calvin spends morning sing-alongs with:

How old is Calvin?
Does Calvin have autism?
Can Calvin eat?
What medicine does he take?
Does Calvin have any friends?
Are seizures like fainting?
How come he has epilepsy?
Will he get better?
Does Calvin celebrate his birthday?
Can he drink?
Can Calvin ride a two-wheeler?
Why is there something wrong with his brain?
Is he allergic to anything?

I told them that, yes, Calvin does have a form of autism but that his real struggle is the epilepsy and the medications he must take for it. I said that we don''t know if he will ever get better but that we hope for a cure. I explained that Calvin isn't aware of things like birthdays, then described the dance party we have every year in celebration of his life, for which our adult friends who know Calvin donate hundreds if not thousands of dollars toward finding a cure for epilepsy.

The question that was hardest to answer came from a little girl seated cross-legged in the front. "Do seizures hurt?" she asked. I paused for a second before answering, knowing that some seizures do hurt, that some are terrifying for the victim, that during seizures people burn themselves and bite their tongues and hit their heads and break their teeth and bust their noses. I crafted my answer carefully. "We don't know if Calvin's seizures hurt since he can't tell us ... we don't think so ... but sometimes I think his muscles hurt afterwards," and I left it at that, failing to mention his headaches.

This was the fourth time I’ve spoken to a class about Calvin and epilepsy. The group was focused, patient, serious and listened well to each other's questions. When I explained to the children that most of Calvin’s friends are adults, one pretty girl with dark skin and braids raised her hand enthusiastically and said, “I’ll be his friend!” Somehow I knew she would, and I told her as much.

Little hands kept popping up from the kneeling group of munchkins. Their sweetness and sincerity touched me. This was the first group of students I’ve encountered that didn’t giggle when I told them all about my son.

Calvin sat in Mary’s lap at first, laughing in a way that puts me on edge because I don’t know why he’s doing it. I silently thought, he’s going to have a seizure soon, and so I encouraged Mary to walk him around to help him feel more comfortable. The two of them marched off while I answered the remainder of the kids' questions, wishing so that Calvin could be one of them, his little arm excitedly raised, his lips pursed together in concentration, eager to ask the next question.

friday faves - lost love

Written by Martha Miller

My heart is beating
fast
scared.
Write about lost love
he says.
All I can think of
is Lisbeth
and how
I lost the little girl
she was
that day
in sparkling summer.
She'd been ill
and was feeling better
then awoke
that morning
saying
Mommy
I don't feel good.
I laid her on the couch
and gave her some Tylenol.
Twenty minutes later
It happened.
She was grey
eyes rolled back
the whites of her eyes now yellow, moist
a faint clicking in her throat
her body stiff
jittery
I yelled to Garry
to come.
Call 911
he said
and somehow
I did.
Waiting on the front steps
for the ambulance
the word epilepsy
playing
in my head.
The ambulance.
The men carrying her out.
Garry rode with her
I followed
in our car
praying
oh god
please
this is not
how I want to grow up
The ER.
Lisbeth
on the stretcher
they'd cut
her pink summer shorts
in half
tubes
down her throat
And Garry.
leaning over her tiny body
her shiny white blond body
her perfect pink six year old body
her blue eyes
shut.
What
(The Fuck)
was happening
wanting to turn and run away
Garry saw it in my face
and said
gently
c'mon Mart.
I walked to the cot
where she lay
and I
began
to sing to her.
I sang all the lullabies
I'd sung to her
when she was a baby.
I knew what my job was
now.
Years later I would dream that Lisbeth's head

was just an egg
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head

to her body
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.

drawing by Martha Miller