7.30.2012

the dream

Two-thirty a.m., my eyeballs jerking and roving bathed in REM, the baby monitor hissing in my subconscious while dreaming of the President who is my good buddy. I built him a sculpture made of chicken wire and wax to take with him on vacation. Lucky guy.

I noticed Calvin in the corner of the room, under the window on the hardwood, as if he’d been tossed there like a rag doll just like the kid in the movie I’d watched earlier that night. His bluish face appeared like a little monster—jagged teeth, eyes half-crossed—and looked as if he’d eaten something rotten. Skinny arms and hands collapsed into a crippled pile in his lap, just behind his little drawn-up knobby knees. He was seizing.

Sharply, I awoke sweating, trying to shake off the dream hoping it was just that—a dream. And it was, but the fear and sour taste of it no different than the real thing, than any seizure I’ve seen my little boy have. These seizures gouge a pit in my stomach, carve deep into my heart, raise the bile in my gut. They’ve etched a loathsome pattern of worry into my skin—perhaps just under it—or maybe even into the marrow of my bones. No matter how many, they don’t get any easier and even if there are fewer I still wait for them around every corner, can’t let my guard down.

But I went on back to dreaming, thought afraid I’d dream of one again. Instead I think I dreamt of something like how Jemaine, from The Flight of the Concords, was my boyfriend, or perhaps I dreamt again of breathing underwater, or of my brother taunting and teasing me, or of my beautiful Calvin running to me across a golden field calling, "Mama, Mama, Mama."

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


7.29.2012

good husband

Michael cooks, he cleans, he shops for groceries. He brings home the bacon and pays the bills. He finds the music and plays it. He pours me wine. He's an amazing dad to an impossible kid (though impossibly adorable.) He gives me loving smiles. He says “I’m sorry.” He does the laundry. He changes the oil. He looks good in an apron. He makes me very, very happy.

He plays vinyl records—loud. He takes me to dinner. He's my best friend. He has a great sense of humor. He gives me compliments. He's very forgiving. He laughs at my jokes and gets me to laugh when the world looks black to me. He takes incredible photographs. He's compassionate and generous to those less fortunate. He's a progressive thinker. He views the world in ever changing ways.

He works harder than anyone I know. He gives Calvin tons of hugs and tickles and kisses. Although he has an amazing vocabulary he likes to drop the F-bomb about as much as I do. He teaches me plenty and willingly learns from me. He recognizes his limitations, which in my estimation are few. He loves his parents. He loses at cribbage. He rides a vintage motorcycle in a cool brown distressed leather jacket. He fixes anything and everything. He is humble, yet confident.

He digs Frank Zappa. He's one of his students’ very favorite professors. He makes strong coffee. Kids and animals love him. He paints things. He reads interesting books. He has super friends. He enjoys simple pleasures. He wrote the music and lyrics for a song on his guitar and he plays it over and over. He loves me unconditionally.

I couldn't imagine raising Calvin with anyone else but Michael.

Version originally published 4.27.11.

photo by Tim Diehl

7.28.2012

irkometer

My irkometer goes from zero to sixty in about five point three seconds as soon as Calvin starts into his hyper, manic behavior—thrashing about, screaming, kicking, spasmodically punching the air, ripping his glasses off, biting channels into his wooden tray. Any semblance of calm I once knew goes right out the window. Any mellow resolve found in a single glass of white wine in summer is broken, with tears, like a child’s spilt milk.

Originally published 7.17.11.

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

7.27.2012

walking and running

We all wake up in the morning and roll out of bed. Sometimes we’re still fuzzy, groggy, perhaps even lightheaded standing up too fast. Still we are able to shake off the cobwebs, take one step in front of the other and make our way across the nubby carpet onto wide pine planks to our babe’s crib.

Cribside, we unwittingly stand with enough balance and strength to lift our child—who is already standing himself, patiently waiting for mama—over the high railings and give him good morning kisses, his little arms wrapping tightly around our necks. We shut our eyes and drink in the kind of moment that we wish could last forever but never does.

We step easily and assuredly, heel to toe, to the changing table and carefully place our child on his back, our feet slightly apart beneath us, steady. He grabs his toes and babbles as we put him into a clean dry diaper that feels nice on his velvety skin.

Balancing him on our hip we take the stairs one by one and count them off for him until the landing, and then there are three more ... one, two, three!

We set our boy down and—in my mind now, a departure from reality—I see him skitter off, almost running to jump into his father’s arms, wrapping his legs around daddy’s waist like a monkey. He feels practically weightless supporting his own mass, which is beginning to increase by leaps and bounds.

In my imagination my sweet son is excited by the chirps of chickadees and the squawks of large, oily, black crows, especially the baby ones, whose voices squeak awkwardly like prepubescent boys. The sun is beaming through leaves spinning half circles on short waxy stems—then back again—like some midway carnival ride. He spies a red cardinal with a neon beak soaring effortlessly as if on a wire. My fantasy continues as he wriggles his way out of daddy’s arms, runs to the door and opens it. Knees high, he prances giddily, up on his toes. Once outside he skips his way to the flowerbeds like a delicate white butterfly riding on an invisible roller coaster, his arms stretched above him, waving fingers spread on flat palms against the breeze.

But then I snap out of my reckless dream when I hear the locks on the high chair tray engage and the buckle of the black nylon belt, which goes between my son's legs and around his lap, click into place. My boy cannot walk by himself, not without risking a dangerous fall, perhaps because of the seizures, the drugs, or both. But I can ... we can. What amazing autonomy we enjoy without so much as a second thought when we wake each morning and roll out of bed.

Originally published 8.11.11.

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

photo by Michael Kolster

7.26.2012

tough on epilepsy

Written by Kaitlin Hardy

The most important thing to me in the world is being tough. I was never the best gymnast, and never the best student but I’ve always been able to do a good job of faking it by gritting my teeth, burning the midnight oil and powering through. I had just struggled to regain my place on Cornell’s gymnastics team after a fall that resulted in seven fractured vertebrae when the tonic-clonic seizures began, assumedly from the concussion I suffered in the accident. After several ambulance rides, medication changes, and extended hospital stays I was left with no choice but to take a medical leave of absence from campus.

Because of the seizures I found myself stuck at home without school and gymnastics and in need of a babysitter at nineteen. My entire identity depended on being a successful student athlete, but instead, I was alone and teetering on feelings of depression.

Eventually, I began pulling myself out of the hole. I slowly started to work out again. That small step towards regaining my identity as an athlete was just what I needed to get my life back in order. By the end of December I had nearly caught up with school work and was almost back into gymnastics shape. I made up my mind to return to school three weeks early, in the beginning of January and, with the rest of my team, start practicing again, and take all of my final exams before the next semester started. Having these goals in mind was the final push that I needed to stop letting epilepsy win.

Before I left school one of the doctors had mentioned something about a hockey player also having epilepsy. One evening I tracked down his name and contact information and sent him an email. Together, we worked to set up FACES: Facts, Advocacy, and Control of Epileptic Seizures. We set up fundraisers for the Epilepsy Foundation, and formed a support group for other students going through similar struggles. Epilepsy is a lot more common than most people think, affecting about 1 in 100 people. As fate would have it, I learned that one of my professors that semester has a son with epilepsy. She eagerly signed on to be our faculty advisor, and through a lot of hard work FACES is finally starting to take off.

I still have good days and bad days, and I struggle with both school and gymnastics on a daily basis, but I finally feel like myself again. Watching FACES grow and flourish and getting the chance to make things just a little bit easier for other families going through the same thing that I did has helped me heal. I also feel like a changed person now that I’m out on the other end of the tunnel. I have a whole new perspective on what being strong and resilient is all about.

Please share.
Give to cure epilepsy: http://www.calvinscure.com
Visit FACES: http://www.facesepilepsy.org

Kaitlin Hardy in true form with teammate Ashley Maher

7.25.2012

no pessimist

No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.

—Helen Keller 

photo by Michael Kolster

7.24.2012

patience

Like most parents I lose my patience. It usually occurs after the bazillionth time I’ve had to tell Calvin to stop biting the bookcase, the shutters, the window, the banister. He’s got a hairline fracture in one of his front teeth as a result of all his biting. I’m surprised he hasn’t broken a tooth off while trying to munch the cast iron radiator or the sink. Sometimes he drives me so crazy I scream until my throat gets raw and hoarse, though it takes a lot to get me there. And the poor kid, he can’t even help it. At eight-and-a-half he’s still stuck with the oral fixation of an infant thanks to hundreds of seizures and thousands of pills, tablets and capsules filled with mind-numbing chemicals that would flatten any adult like a pancake on a hot griddle.

For whatever reason I woke up with the blues and it went downhill from there, perhaps because of my perpetual state of sleep deprivation, perhaps hormones, though more likely the antics of my daffy kid. The blackness creeps over me without any warning and I emit a mood so strong—like garlic seeping out of my pores—that it, and my barking, shoos our dog Rudy into the next room. When Michael sees me like this he first tries to cajole me out of it with jokes and if that doesn’t work he’ll ditch his plans to put some weekend hours in his studio in exchange for spending extra time with Calvin and me.

The weather was stellar, warm and windy, perfect for the neighborhood kids sitting behind a low table selling lemonade and chocolate chip cookies. Michael crossed the street first holding Calvin’s hand and called Rudy to follow, while I straggled along behind them with a little black cloud looming over my head. Once across the street I grabbed Calvin’s other hand and we coaxed him up the broken sidewalk trying everything in our power to thwart his ceaseless staring at the sun and his fierce desire to drop to the ground like a stone or wilt in our arms like some water-logged rag doll. Eventually, Michael had to pick him up and carry him, which he has to do often, especially if we want to get anywhere.

At the lemonade stand Calvin stumbled over to a handsome redheaded boy, Lane, and hugged him as Michael held Calvin’s harness as if suspending a marionette. In the process Calvin slimed Lane’s face with a big slobbery mouth, perhaps trying to give him a kiss. Lane, only a couple of years Calvin’s senior, and who has known him for years, remained patient and kind in the face of our goofy little kid who was completely mauling him with affection.

After our cookies and lemonade, we buckled Calvin into the stroller for a short walk across campus. We staked out the only bench on the grounds, right next to a young father and his babbling baby, who must have been no more than six months old, making sounds I’d never heard coming from Calvin. Perhaps to make myself feel better I remarked on what a happy day Calvin had had and how, having spent most of it with Michael, my mood was much improved, my patience reserves recharged, if only a bit.

On the walk home, I thought about my previous ugly, annoyed mood toward a son so innocent and pure. “I wonder if parents of dying children treat their kids any differently?” I asked Michael, then added, “If I knew Calvin was going to die, would I still lose my patience?” The thought stuck with me for the rest of the day.

After Michael finished making dinner for us—again—we sat down with our roasted salmon nestled in a sauce of blueberries, sautéed shallots and white wine, and popped in a film. In an offbeat and humorous manner, the movie (which I won’t name here so as not to be a spoiler) explores life’s differing perspectives, particularly playing brother against brother, wife against husband, mother against son, fate against chance. The characters, all of whom are beautifully crafted from one scene into the next, each have a rare blink-of-an-eye opportunity to taste a bit of what life would be like if one of their most beloved had died. At the end of the film they all hang in a white-knuckle limbo skirting the edge of the unknown, the edge of tragedy, of loss, of death. The intensity of the scene made me gush tears, flooded me with heartbreaking thoughts about what it might be like to lose Calvin.

When the movie was over we headed downstairs to clean up. Silently, I ran cool water over blueberry-stained plates and loaded them into the dishwasher in neat rows. I heard Calvin rustle in his sheets and make a little sigh. I turned the movie over and over in my mind, the mix of emotions it explored—rage, aggravation, worry, love—and I realized, hoped, that in my most fragile moments of anger and frustration, perhaps I can have a bigger slice of patience for a boy who, though he drives me batty at times, I’m not so sure how I could live without.

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


7.23.2012

into the trees

I must allow myself simply to
wander into the trees
That is where mystery lies
sometimes dormant, sometimes teeming
I must step through mist that
wraps round my ankles
without fearing what might lay in my path
I could fall into an abyss
—I have before—
but I am strong, I can pull myself out
I might bruise my bones, bloody my palms
but I will heal
Or as dew drops pat my face
I might happen upon a gleaming river 
just beyond the parted trees
I might rest on a large stone and
melt into it
I might lay myself down into a
bed of moss
and listen to wind finger through the leaves
to bird songs
to rain and crickets
and forget all the rest
I must feel the bark chafe
against my face
I must sink into the mud from whence I came
I must wander into the trees 
and very simply

7.22.2012

two steps forward two steps back

Since the advent of his epilepsy diagnosis Calvin has made little progress in terms of his ability to walk. His awareness of objects—which to avoid and how—is better, but constant dizziness and gait ataxia, likely caused by high doses of his three antiepileptic medications, impede his progress to the extent that he isn't walking much better—perhaps even worse—than when he was three years old. Unfortunately for all of us it's two steps forward, two steps back.

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


7.21.2012

happy birthday, ben!

Our nephews Ethan and Ben—brothers—both have autism. They are lovable, funny and smart. Today is Ben's twelfth birthday. We sang him Happy Birthday over the phone, then spoke with him one by one.

"Hi Aunt Christy," he said, after my mother-in-law passed me the phone.
"Happy birthday, Ben. Have you had a good day so far?"
"Yes, and tonight we are going out to eat pizza."

I asked him what kind of pie he was going to order then agreed that cheese and pepperoni were a couple of my favorite kinds, too.

"How's Calvin?" he asked, as he never fails to do—as neither of my nephews ever fail to do.
"He's doing pretty good, Ben. It's so nice of you to ask."
"I have an idea," he continued, "Why don't you write a book about Calvin and about epilepsy and sell it in book stores."
"That's what I hope to do, Ben. You had the same idea as I did. That's pretty cool."
And then he added, "Maybe Bowdoin College will buy it."

I smiled and thought to myself, how great would that be.

Happy Birthday, Ben! We love you. And we love you too, Ethan!

Ben, Calvin and Ethan, June 2010, photo by Michael Kolster

7.20.2012

friday faves - little big boy

Originally published 8.9.11.

Yesterday was another hot muggy one but Calvin was doing pretty well considering I’d been suspecting a seizure since the day before. I had tried giving him a prophylactic increase of one of his drugs again in an effort to dodge what seems more and more to be the inevitable.

Just after lunch as I was holding Calvin’s hands I noticed that they seemed warm. I pressed my lips to his forehead, which felt the same. “Would you check his temp for me?” I asked the nurse as I was headed out. She did and found he was running a low-grade fever. She gave him some acetaminophen before he went down for his nap and by the time he woke up his temp was back to normal.

I figured it’d be a good thing for Calvin to lay low and relax—not do the perpetual marching around he usually does all day long—so I asked the nurse to bring Calvin and join Rudy and me for a walk just to keep cool. It had rained earlier so the breeze coming off of the dripping trees felt refreshing.

We strolled through the campus quad, crossed traffic then glided down the hill to Cote’s ice cream shack. Above us heavy dark clouds had begun to form. I ordered a scoop of pistachio on a sugar cone and a scoop of vanilla in a cup for Rudy—that one is always free. The rain began to fall sprinkling on Calvin’s bare legs and feet. He giggled with delight. It started coming down hard so we skittered across the street to a wooden bench nestled against the side of a shop and sheltered by its jutting roof. There we were safe and dry. Michael pulled up in the car to meet us and ate some of my ice cream cone then Rudy got the tip. The five of us lingered roadside chewing the fat and taking turns hugging Calvin, still secured in his stroller but fidgeting some, though relishing attention from his daddy.

Just as we were about to leave a group of elderly folk walked past. The last one, a slightly stooped man with thick waves of pure white covering his head and piercing blue eyes as vivid as his turquoise polo shirt, commented, “now there’s a handsome fellow,” pointing to Calvin. “Good thing he looks like me,” I said smiling. “I can see you’re his mother,” he grinned. He must have been a very dashing young man in his day, I thought, his features kind and striking. I wanted to touch his shoulder. “I’ve had my eye on him,” he added as he leaned in closer to my boy, and I figured he meant he’d been watching us from the car that he and his friends had just piled out of. The gentle man continued, “I’ve met lots of kids like—” and he cut himself short, changed direction, “he’s a big boy ... a little big boy.” I had an idea he was familiar with kids like Calvin. “Yes he is a little big boy,” I said as I turned to Michael in fond agreement seeing his eyes redden and wet like mine. “Yes he is.”

As the man and his friends crossed the street to get ice cream I watched. He limped up onto the sidewalk dragging one foot behind, kind of walking on its side. I said goodbye as we passed but he didn’t hear me, so without pause we kept on heading for home.

Later, after dinner and a second day of increased meds, Michael took Calvin out for a quick stroll around the house. The evening was gorgeous. I sat down at my laptop, briefly writing a few notes about the day, before joining them. Then from somewhere in the yard Michael yelled my name. I jumped up, knowing it meant Calvin was having a seizure out there. “Where are you?” I shouted, “where are you?” I ran out the front door then around the side of the house near the garage. I found Michael on the back step holding Calvin in his lap. He was ghostly pale with blue lips and patchy red spots on his cheeks, his body rigid and convulsing. I kissed his face and cradled his head in my palm. “I love you my little big boy, my poor little big boy.” And we held him tenderly until the storm was over.
Please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael kolster

7.19.2012

independence lost - a different perspecitve

Written by Dan Nicholls

Epilepsy took away my independence. I had my first seizure at sixteen and lost my driver's license along with all of the activities that I loved. Not having a license wasn’t so bad when I was a student away at school but when the summer rolled around I was literally stuck at home needing someone to drive me everywhere. I had just bought a car and put in big subs and thought I was really cool. Then my license was taken away and I'd sit in my driveway and think about how much cooler it would be if I could go anywhere I wanted. I wound up paying for my younger sister to take her road test just so that she could drive me around.

It even affected who I dated. Rule number one: all potential girlfriends had to have a car. I would call and ask, “Hey Katrina, do you want to grab some dinner tonight?” She would say sure and then I'd say, “alright, if you pick me up at 7:00 we can make a quick stop at the bank, then swing by the dry cleaners, and then maybe the mall, then dinner sounds great!”

When I got to college I was told to be careful about the amount of sleep, stress, and drinking in my life. That pretty much sums up my years in college. The side effects of the medication made being a successful student and athlete more difficult than it already was. I later found out that one of the medications that I was on, Topomax, is actually nicknamed “stupo-max.” I couldn’t think straight or concentrate and was therefore given my own special room in which to take tests without a time limit.  My first reaction was, “Yes! Jackpot,” but my mom pulled the plug. “Nope, he’s become an idiot, we can’t have this.”

Family members noticed a little bit of aggression in my behavior. My parents blamed it on the medication. Whether it was due to my anger, lack of independence without a driver's license, or my frustrations with epilepsy I got kicked out of the house in eleventh grade. I made it into Cornell and was able to play hockey there. Epilepsy had made things difficult but in the end it wound up being better that I had moved out.

Every time I have a seizure I managed to crack my face on something—a desk, a chair, the downspout of the shower. I must have bad posture, it’s almost as if I try. Even if I miss the desk there just happens to be a large industrial fan for me to crack my cheekbone on. I often fell on the shoulder that I had dislocated at hockey practice.

People always ask me about the embarrassment of it all, about losing bladder control. I honestly don’t find it that bad. When I have a seizure I don’t remember what happens and I’m pretty sure that all of the descriptions that I get afterward are watered down. It’s hard for me to not laugh after waking up naked on the living room floor while my neighbor is trying to put some clothes on me. One time I had a seizure in the eye doctor’s office, of course hitting my head on the desk on my way down. The friend that I was with immediately threw his jacket over my lap to hide the wet spot. That’s a team player, someone who sacrifices his jacket so his friend can pee on the doctor’s office floor.

Dan Nicholls

7.18.2012

it's all fun and games till calvin pokes an eye out

For weeks we've been trying to get to the bottom of Calvin's manic behavior. His nurses and doctors have thought it might be due to gastrointestinal stress from an impacted bowel, so we cleaned him out with a bunch of enemas and a colonoscopy prep but saw little improvement in his behavior. We've also been thinking he has esophageal ulcers from acid reflux and so started him on an antacid but after a week have seen little to no improvement in his screeching and coughing and cringing and flailing. It's hard to handle and I find my own agitation going from zero to sixty in no time flat as soon as Calvin launches into this behavior.

Bottom line is that it seems very clear to me and Michael that Calvin's lunacy—though likely exacerbated by gut upset—stems from the anticonvulsant drugs, either from his dependency on the Clobazam, a benzodiazepine related to Valium, some hyperactivity from the Banzel and/or the Keppra which, of its top seven most common side effects—sliding in just behind somnolence, lethargy and dizziness—four of them are behavioral. Calvin is so crazy at times he retracts into a little writhing ball and rubs his wrists and forearms together like a couple of whittling sticks. At times when we're trying to feed him he is coughing or laughing so much that we worry he'll choke on a piece of food.

And, even on a relaxing car ride or lounging in a hammock, he flings his arms so wildly he's bound to pop us in the eyeball with an errant fist, box our ears or scratch our faces, though none of it intentionally or maliciously. Yep, it's pretty much all fun and games until Calvin pokes an eye out.


7.17.2012

google mania

This is for my friend Renee whom I've never met, though I'd like to, and who writes her own blog,  every now and then i fall apart, and in it she said:

When I begin a session of what I like to call Google Mania (spending hours upon hours Googling a myriad of research, reports, remedies, voodoo, etc), I inevitably wind up on a blog founded by a mother or father of a child with a seizure disorder or some other special needs.  Their stories captivate me, inspire me, smash my heart into smithereens.  My favorite is Calvin’s Story.  I am so in love with this boy, I almost can’t take it.  I anxiously await each post by his mother, and I scour her site for more pictures, more videos, anything, anything at all so that I can hear his voice, see his beautiful face that I want to smother with kisses.

Here's to you, Renee, with wishes, hopes and dreams for you and your family from me and—if he could—Calvin.


7.16.2012

a day in new york

I love New York City. It’s as plain and simple as that. I love that when I ride the subway I’m in the minority, scores of close bodies in every shape and shade from milky to mocha to deep cocoa brown rocking with the ebb and flow of the train like kelp in the sea. I love pounding the hot pavement in sandaled feet, steering between plump women pushing strollers in flowing frocks, chicks with tattooed limbs emerging from tees and cutoffs, men in khakis sweating through their shirts and younger ones in low-rider denim chatting into their cell phones. I love sitting on the sidewalk eating lunch in the shade of a low awning watching the masses stroll by speaking Spanish, Russian, Italian and a plethora of other languages that I don’t recognize much less understand.

Michael and I were there for less than twenty-four hours, but that we were there at all was a major feat, having been lucky enough to secure a nurse to stay overnight with Calvin, his school aide flanking the nurse’s shift on both ends. It felt weird getting on the plane with Michael yet without our son. We'd never done that before.

During our whirlwind trip we encountered things like a calamari and frisée salad with chorizo croutons, a sneaker-clad, frizzy-haired David Byrne passing us by on tenth Avenue, a couple of late afternoon beers and a glass of sparkling Prosecco, a gigantic black sculpture of a coat hanger, sepia-toned tin-types of surfers, a room with a view in diorama, a subway ride, taxi ride, a stroll on the High Line and a woman in cutoffs and unlaced combat boots confidently strutting down the street topless.

Michael’s Chelsea gallery debut was sublime. All that hard work by the most prolific artist I know paid off when he met a gallery owner at an artists’ residency who liked his work enough to give him a solo show. At the opening we drank white wine from plastic cups standing in front of window-mounted air conditioners that did little to cool the room. The show of support made my eyes sting as the sprinkling of onlookers snowballed into a sweating throng. Scores of Michael’s former students peppered the crowd. The first to show was a college rugby buddy closely followed by two of Michael's cousins and their children. Then, our good buddy Charlie appeared by total surprise having driven several hours just to say congratulations. Mostly, though, the space was filled with unfamiliar faces doing the gallery walk. Because of the noise, at one point I stepped into the back storage room behind a heavy curtain to call home and ask how Calvin was doing. At that moment I realized I’d been able to relax and stop worrying about my son, at least for a few hours.

And, the next morning, after an amazing late-night Italian dinner at Petrarca, a former student’s family restaurant, we watched the city fade and disappear out the back window of our cab and I thought about Calvin. I imagined how much fun it would have—could have—been to take Calvin hand in hand pounding the pavement around Manhattan, showing him fantastic art, eating hot dogs slathered in mustard from a street corner vendor, giving a paper bag of restaurant food to a homeless man, gazing up at immense and beautiful sky skyscrapers casting their shadows on us, all in a place I love so dearly. I long to share with him my fondness of the most wonderful melting pot in the world. But unless we can find a cure for his seizures freeing him from the delirious, debilitating effects of anticonvulsant drugs, a day like that in New York with Calvin can exist only in my wildest dreams.

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

At Schroeder Romero & Shredder gallery

7.15.2012

sometimes frustrating

Sometimes it's so frustrating when we have to leave a thoroughly enjoyable barbecue simply because Calvin can't deal, won't walk without collapsing, falls on his glasses and hurts his face or becomes completely manic. And, on the drive home we always find ourselves saying, "poor kid, he can't even help it."

He's a sweet little kid whose condition, and the drugs for which he takes, makes most things for us nearly impossible to fully enjoy. Ugh. But hey, at least he hasn't had a seizure ... yet.

7.13.2012

friday faves - sharing stories

This time last year I met a family that I've grown to love. This is the story of how our paths crossed:

I jumped onto the back of Michael’s motorcycle, wrapped my arms around his waist and we sped off to the next town over for an ice cream fix. When we arrived, we doffed our helmets and leather jackets and were greeted by a smiling blond behind a small window. She brought us our sugar cones piled high with cold creamy sweet stuff, and as we turned away from the shack a van pulled up beside us. A slender dark-haired woman, probably several years younger than I, stepped out of the passenger side and rolled open the back door. As I passed behind, her child peered at me from his car seat, his head slightly bobbing, a look of earnest on his sweet round face. Immediately, I knew the little kid returning my gaze was not just an ordinary boy.

His mother lifted him out and carefully set him on his unsteady feet. As she held his hand he did his best to walk a little, shuffling slightly as he did so. Like Calvin, he stumbled and had trouble keeping balance, each step an effort of coordination and strength. Watching the two of them from a nearby bench I felt as if I were having an out of body experience, as if I were somehow seeing myself with Calvin. Michael encouraged my desire to approach the couple to ask about their son. I was hesitant, not wanting to insert myself into the intimate lives of strangers, but we had nothing to lose and everything to gain. Plus, Michael said he’d go with me.


“What’s your son’s name?” I asked somewhat nervously. The woman, casually attractive with short dark curly hair and wearing a pretty black and white printed blouse, responded kindly, warmly, said he was five and a half. I introduced myself to her husband and shook his hand while remarking that I thought our son Calvin might have something in common with their boy. Her son, as she explained, has a very rare condition, with a long name I’d never heard of, that he shares with about a hundred other boys in the world. I mentioned Calvin’s seizure disorder and his other physical and developmental challenges and asked if her son had seizures too. She said something like, “not yet, that comes later.”


The boy sat quietly and steadily on the picnic bench leaning forward to take licks off of his father’s ice cream cone. I smiled. I wished Calvin could do that. I asked if he was their only child. When she said yes my throat tightened, and as I answered her same question my voice quivered, I had to take a deep breath. Michael and I don’t know any other families who share the reality of having an only child who is severely disabled. We must have so much in common, I thought to myself, and I desired to know everything at once—to open her mind, see into her thoughts, know her heart’s deepest feelings—to connect.


We happily exchanged email addresses on a flimsy white paper napkin torn in half. As we said our goodbyes I asked if she liked wine. Affirmative. I told her that perhaps a glass of wine was in our future. I am hoping so.

 
And, later last summer my wish came true and I've been living it ever since.

gone fishing

Dear friends,

Gone fishing in New York City. Be back tomorrow. See you then.

xo,
Christy

photo by Michael Kolster

7.11.2012

nicole's seizure

I had a grand mal last night on the sidewalk of a shopping plaza. (I'm fine. Not a scratch) I don't remember any of this, but my bf and friends told me how like 5 people wanted to know if help was needed (thanks), while a group of people stood there and laughed, one woman wanted to put something in my mouth for my tongue and was offended when told that's not what you do, while another woman made comments about how drunk I must have been to be on the floor like that, and then there are the people that just wanna watch. I think it's strange how so many different people react when things like that happen.

—Nicole Newbern

When I logged onto Facebook a couple weeks ago I saw this entry from a twenty-two year old Facebook friend who started having seizures—out of the clear blue—when she was nineteen. Since the day of her first seizure she's had between two and eight seizures a month—that she is aware of—from grand mal to complex to partial to absence. She's been on up to seven different antiepileptic drugs having to take them multiple times a day, plus anti-anxiety meds. She's lost jobs, battled disability, been unable to work or go to school or drive or ride the bus or be alone in public or drink. She's been terrified of taking showers in fear of falling and has essentially been prevented from "being an average twenty-two-year-old girl."

As a result she started a Facebook page, Nicole's Epilepsy, to help promote epilepsy awareness and to share the stories of others. Please go to: https://www.facebook.com/NicolesEpilepsy

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

Nicole's injuries after a seizure

7.10.2012

off to the market

The Prairie Market was a precursor to today’s Trader Joe’s, only more raw, more down home. It had the same cement floors and wide aisles, though was completely void of mothers wearing Lycra yoga pants, tank tops and hoodies. When my mother shopped there I rode dangling my feet over the edge of a low, flat metal cart, its large casters spinning and squealing around wide turns between rows of gallon milk, family sized toilet paper and endless boxes of cereal. I helped her load the cart full of Hamburger Helper, Tang, Instant Breakfast, Cheerios, Wheaties, non-fat dried milk, Potato Buds, meats, cheeses, eggs, ice cream, flour, sugar and various other items she’d add to a garden full of vegetables and fruits that my dad tended.

In sharp contrast, I almost never bring Calvin to the grocery store anymore. He’s gotten too big (too long, really) to ride in the shopping cart without snagging his shoes on the seat making it impossible to get him in or out. Besides, he has never really tolerated the grocer very well, giving in to flailing and screaming most of the time and once or twice having a seizure right then and there.

Yesterday, though, we took an outing to the health food store to pick up his latest treatment—magnesium citrate. I pulled up to the curb in front of the shop, helped him tumble out of his car seat, stand and turn to push the door shut, watching him smile at the satisfying clunk of the heavy car door. Holding one hand, my other on his harness, we walked to the shop door and pulled it open. Inside, the two women sitting at the counter greeted us. Calvin insisted, as he had all day long, on stubbornly dropping to the floor. One kind woman fetched what I was looking for and rang me up as I sat Calvin facing me on the counter. He writhed and squealed and laughed hysterically and yanked my hair and scratched my neck. As I struggled to retrieve my wallet from my backpack I explained, “Calvin has epilepsy and I think he’s due for a seizure.” I added that it wasn’t imminent—as in immediately—but that it might be on its way in the next day or so. In exchange for the receipt I handed them two of my business cards, the front sporting a photo of me and Calvin, the back of which has the blog address and my mission to promote epilepsy awareness. With Calvin’s arms wrapped tightly around my neck I quickly rattled off a few facts about epilepsy, “Epilepsy kills more people than breast cancer, yet no one knows,” then added, “and there's little advocacy since few want to admit that they have epilepsy or that their kids have it for fear of discrimination.” The women looked at me with deep concern and compassion. “Please share it with the world,” I said, and somehow I knew that they would. As Calvin and I left the shop I felt their eyes heavily upon us, even as I loaded my boy into the car and drove off.

Before heading home we had to return something at another health food store. As soon as we entered the small shop Calvin let out a piercing shriek, turned to me and “asked” to be picked up. I obliged, and simultaneously met eyes with the young woman behind the counter who looked mortified and, despite my smile, remained stunned, her narrow shoulders cinched up around her neck. My buddy Phil stepped in and finished the transaction having helped me frequently in the past and knowing, to a certain degree, Calvin’s struggles. I calmed Calvin, hugged and kissed him and reassured him we’d be leaving soon, then lifted him to the ground, held his hand and harness and helped him push the door exiting to the sidewalk. We slowly passed by a couple sitting on a bench with their infant-toddler, his chubby legs dangling over the side. Gingerly, Calvin stepped down off the curb to the car and with my hand over his we opened the door. I hefted him up and buckled him into his seat and as I got into the driver’s side I looked at the couple on the bench. They’d been watching us with big smiles on their faces. The man, tanned with a handsomely rugged stubble, looked to be forty-ish, the woman fair and blond, several years younger. The man gave me a huge thumbs-up as if to say good job. There was no pity in their eyes, only fondness, admiration and compassion. I wanted to know them, to hug them, to tell them all about Calvin. But I had already started backing out and as I drove off we waved and smiled at each other again just as tears began rolling down my face. And peeking into the rear view mirror there was Calvin, a big toothy grin on his face, biting his shoe, squealing and flapping his arms to his all-time favorite Joni Mitchell song.

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

photo by Michael Kolster

7.09.2012

eat, mama, eat

My sister called last evening while I was making Calvin’s dinner, as she does most every Sunday when she’s with my mom. She’d picked up Mom from Bayview, the Alzheimer’s unit where she spends her Sunday mornings so that my brother and his wife, who she lives with, have some time to themselves. The two of them were driving to the zoo so Caron put Mom on the phone.

“Hi mom, it’s Christy,” I began.
“Oh, hi. Where are you and what’re you up to?” She asked, in an unusually subdued tone.
“I’m in Maine, Mom. How are you doing? I asked.
“Eh.”

Her words were garbled, her tone annoyed, and at one point she told me that she couldn’t hear anything. “You can’t hear me?” I asked. “That’s correct,” she replied. I had to chuckle.

The sour quality to her voice was one that I almost never hear. I asked her how she was doing again and she said, “Just so-so.” I asked what she was doing and she replied nastily, “I don’t know what the hell’s going on around here.” I reminded her that Caron was taking her to the zoo.

“Don’t you like the zoo, Mom?” I asked
“No.” I could sense the scowl on her face.

With the phone in the crook of my neck I continued to try to cheer her up. Michael looked at me curiously, noticing that something was wrong.

“Well at least you’ll have fun with Caron, right?” I added. Mom mumbled something like, “Yeah, maybe.” And when I mentioned they’d be taking her out to dinner or back to their condo to eat, she scoffed, “I doubt it.”

The rest of our conversation she peppered with statements like, “I don’t give a damn ... I don’t know who the hell that is ... who cares,” and, when I asked her how her knees felt, she spat, “Oh, they’re miserable!” which is so unlike her to say, even when they’re hurting. Then she added, “At least I’m not dead.” At the end of the bruising conversation when we said our goodbyes, I told her that I loved her and—for the first time ever—she didn’t say it back.

Caron got back on the phone to say she hadn’t heard Mom sound quite like that before. We were worried, Mom having always been such a vivacious, upbeat spirit. I mentioned the Alzheimer’s study we’d read about where one group of patients watches a sad movie and the other group a happy one. Afterwards, neither group remembers having watched the films but the feelings they elicited linger. “I wonder what might’ve happened earlier today?” I questioned. We were both perplexed.

Later, Caron called me back. She said she’d asked Mom what she wanted to do and Mom had answered, “Eat.” So the two of them drove back to her condo where her husband gave Mom an extra big hug while Caron began making her a sandwich. After eating the snack Mom piped up in a chipper voice, “I think I was just hungry.” Then Caron asked her if she’d like to go to the zoo or to the park. “Either one or both!” Mom replied in her usual optimistic, bubbly form, and then added, “I think I was just hungry.”

Mom and my sis

7.08.2012

walking waterfall

I am a walking waterfall,
carved with rivulets
clenched jaw
a millennia of sorrow like
granite boulders wedged into a place
far too small—
my heart

I am a walking waterfall,
mood black and brittle as mica
in ways steadfast in spite of glacial stress
worry, pain, loss
like marble, knotted veins braid my thin hands
wind and water slowly withering
my essence

I am a walking waterfall,
tears cascade over stony cheeks
flooding my core
relentless winds scatter bitter drops into mist
but not before I taste them
in the corners of
my mouth

I am a walking waterfall,
bathing a silent, shivering boy
whose dreams I’ll never know
mild as a river stone—polished, beautiful, unchanging
I pour my all into him, over him
he rests in the pool at
the bottom of
my heart


7.07.2012

how can you miss what you never had?

How can you miss what you never had? I’ll tell you how. It’s deep in your DNA. It was there when you fell in love with the little kids you babysat when you were just a kid yourself and you thought, if I can love these kids this much, what about my own?

It’s in the way you see a friend hug his daughter and how she looks up at him with deep affection and fondness—your own child having never done so before—the low sun glowing off of her bright face. It’s in the way they recede, arm in arm, and how their long shadows form—bittersweet—into one.

It's in the way a mother sits her toddler on the kitchen counter and walks away. When, in that same moment, you instinctively, reflexively, imperceptibly stop yourself from lunging to catch a child who isn't falling—who won't fall—like you've had to do with you own child a thousand times before.

It’s in the way you see a man ride by on his bike explaining something to his son who is riding his own bike, the boy's stern face concentrating on his father’s words and on the road ahead. And you know some day that boy will be an independent man and likely a father to his own son, while yours will not.

It's in the way two kids not much older than your own child skip by on their way to the corner shop for treats. Total independence, you think, as you clutch your child's hand so he doesn't fall to the hard ground.

How can you miss what you never had? It's in knowing your child will never swim like a fish with you, sit next to you at a campfire and talk, read the books you read, appreciate the art you love, sit in the driver's seat next to you, have his first beer with you, travel with you, write to you, argue with you, confide in you.

It's in the meeting of the grandparents of other kids who dote on them in ways you'll never in a million years have the chance to do.

It's in the way you see a child pluck a dandelion and make a wish while blowing the soft, white, seedy down into the breeze. It's in the way you see a kid kick a ball to a friend, the way you see a child pump high on a swing, speak in sentences, catch a butterfly, zing by on a scooter, pick wild berries, run in a field.

It's in your DNA—how you miss what you never had—and in the knowing, because of that, that you'll never get it back, even though it's something you never really had but in your dreams.

photo by Michael Kolster

7.06.2012

friday faves - boy on a plane

This time last year we took a holiday in Florida. After a pleasant week-long visit I remember the tearful goodbyes to Calvin’s grandparents, aunts, uncles and cousins before heading to the airport and being dropped at the curb.

When we reached security a nice man in a neat blue TSA uniform greeted us and immediately calmed our nerves with patience and reassuring words. The sparkle in his eye matched the stud in his ear as he passed discs of cotton over Calvin’s battery of medicines that I had stuffed into a one-gallon zip-lock bag. “Is your son an epileptic?” he gently asked. “Yes, he has epilepsy,” I replied. As he continued examining Calvin’s paraphernalia he mentioned that he had been hit by a car when he was seventeen and began having seizures. The phenobarbital he was put on, he said dolefully, made him into a teenage zombie for several years. I knew exactly what he meant.

As we approached the gate we saw a handsome highschooler in a wheelchair who was traveling by himself. The four of us boarded the plane first and were seated behind the bulkhead, Calvin and I on one side, Michael and the boy on the other. No sooner than I had buckled him in Calvin started screaming bloody murder, his feet kicking marks onto the side panel, his arms lurching out grabbing fistfuls of my hair and yanking. The origin of this manic behavior is difficult to know. Is it over-stimulation, discomfort or excitement? No one knows. My gut tells me it's the drugs and/or preseizure flurry. I decided to feed Calvin his walnut snack early trying in vain to calm his crazies.

Across the aisle Michael and the boy chatted. The boy explained that he had been eight weeks premature, had cerebral palsy, and was born missing half of his brain. He spoke in a slow, deliberate manner, a slight thoughtful pause before everything he said, his words round and full. He told us he had seizures and that he was taking a drug that Calvin had also tried when he was just two.

I stretched an arm across the aisle and gave the boy one of my business cards, the one with a photo of Calvin and me on the front, my mission statement and blog address on the back. We agreed to become friends on Facebook. He told us that he loved to read and write. Michael shared some photos on his ipad but Calvin was a magnet. So as they passed the time talking of swimming, photography and books, the boy craned his neck often to watch our son.

At one point the boy noticed the exasperation on my face having to deal with my screaming child. He asked if it was difficult to raise Calvin. Michael replied with total candor and said yes. He saw me try to quell Calvin’s shrieks. “Poor little guy,” he remarked with the purest of empathy, “he can’t help it.” I wanted to cry.

The jet pulled up to the gate and Calvin walked hand-in-hand with me up the gangway so very well, I thought, he’d be having a seizure soon. As we waited for the boy to be wheeled up by a skycap we saw his mother standing patiently, the boy's sweet features mirrored in her face. We introduced ourselves and talked briefly about our encounter with her son and the epilepsy he shared with Calvin. Just then the boy emerged from the hallway, his long thin arms outstretched like an albatross with a huge smile that said, “Mommmmmm.” At this my dammed tears finally cascaded down my face. I quickly brushed them away with the back of one hand, the other holding Calvin’s as he leaned affectionately against my legs wanting to be picked up and hugged.

photo by Michael Kolster

7.05.2012

as good as it gets

Our Independence Day holiday was about as good as it gets. That’s saying a whole lot while at the same time it’s not saying much.

On Tuesday we got an invitation to spend the holiday with our friends Luke and Sarah and their boy Jacob who shares many things in common with Calvin, though not seizures. We spent the afternoon at Sarah’s handsome childhood home, which sits on a sloping lawn above a cliff overlooking the sea. The breeze was fresh and salty and offered respite from the hot sun. Michael took first turn walking Calvin around by his hand and harness. Calvin explored their house and happily banged on our group of parked cars until his hands were black as soot. Luke served Sarah and I vodka tonics in aqua-tinted glasses and, for a moment, out there on the back deck—Calvin-less—I felt as if I were on cloud nine.

When my glass was half-full I relieved Michael so that he could get some downtime, too. Luke and Sarah did the same tag-teaming since Jacob, six, also needs assistance walking, his balance and control being just slightly better than Calvin's though not good enough to be completely safe on his own. These boys of ours are getting bigger, roughly forty pounds and inching up, though they still have no protective reflexes when they fall backwards, so we must be there to prevent injury from a bad fall. For us, as their mothers, it’s like spending our lives with one hand tied behind our backs with a precarious, fragile, forty-pound weight attached to it. Try to get anything done that way. You can’t.

We enjoyed some amazing pan-fried buns chalk full of lobster meat and mayonnaise, corn, hot dogs and a delicious potato, egg, Greek olive and haricot vert salad that Michael made. After dinner Sarah and I took Jacob and Calvin for a quick walk in the strollers down to a rocky beach where her husband had proposed to her. Calvin got out, we abandoned the stroller, and he walked loosey-goosey part way down and part way back before I had to pick him up and carry him.

All in all the holiday was a winner—save some kid-related stress—what with afternoon drinks, great weather, a gorgeous view, delicious food, a relaxed location and, most of all, dear friends who deeply understand our situation, and who love and support us. The invitation alone, a rarity for our family to receive especially since Calvin’s birth, made our day. But there was something missing. It wasn’t as good as it gets ... I’m not sure that will ever be possible again. I told Sarah as we were packing up to leave, “I just wish our boys could run off and play with other children while we sit and enjoy adult time.” She replied softly, “I know,” and we hugged and walked a few steps with our arms draped around each other just as we began hearing the pop and crack of neighborhood fireworks, some no doubt being lit by a bunch of healthy little kids.

7.04.2012

7.03.2012

change the world

Never doubt that a small group of thoughtful, dedicated citizens can change the world. Indeed, it is the only thing that ever has.

—Margret Mead

photo by Valli Zampini

7.02.2012

the best exotic marigold hotel

I ran in from the rain, purchased one ticket, a small bag of buttered popcorn and a bottle of water. Once inside the small theater I stepped past rows of frizzy white-haired women and balding men. The house was quite full for a Tuesday matinee, but luckily my favorite couch in the front row was vacant. I’d made it just in time for the previews and finished my popcorn before the feature film began.

We were all there to see The Best Exotic Marigold Hotel. I’d heard nothing about the film but that it was worth watching. And so began my vicarious journey—through each of the characters’ eyes—into India. I traveled on a crowded bus laden with baggage strapped so tightly to its back that it looked like a laced roast beef. I jammed myself into the back of a tuk tuk weaving through throngs of colorful, dusty, beautiful people. If I’d been lucky enough to be watching in Smellorama my mouth would’ve surely been watering for curry and naan. I wanted to be THERE. And just as I was quietly lamenting my life’s imprisonment with my disabled son, my cabin fever, my inability to travel the world in the way I’d done in years past—to travel to India as I’d always wished—the soothing voice of Dame Judy Dench spoke to me and said:

This is a new and different world. The challenge is to cope with it ... and not just cope, but thrive.

I continued to ride the wave of scenes that passed before my watering eyes, to see beauty in the simplest things, the most basic gestures—a warm embrace, a spicy home-cooked meal, a kind face, a bustling market, a modest yet rewarding job, an evening stroll through the city, joyful children playing in the streets, the sound of a foreign language, the beauty of a different people.

As I watched these images blur across the screen and felt them move me inside, I tried to see—to understand—how my life with Calvin, with his seizures and drugs and gross limitations, might be rich and colorful. And though our days are monotonous and stream into each other as silently as osmosis, I know that he has changed my life—has changed me—in a way not unlike the culture shock of visiting a foreign country, but in a profoundly deep way that allows me to see the world from a completely different perspective, a less selfish one. And, as one of my favorite poems reads, Calvin “picks me up, turns me this way and that, and puts me down softly in a new place—always a new place.” For the most part, I think I’ve found ways to cope with this new and different world of life with Calvin, and I am constantly looking for ways to thrive—this blog being one—but it is indeed a challenge, most assuredly the greatest of my life.

And maybe one day, after years of being Calvin’s mother, nurse, physical and occupational therapist, doctor, coach and teacher, all that hard work will pay off and I’ll get to step out of this world and into another ... maybe even an exotic marigold world called India.

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

7.01.2012

if it's not one thing it's another

When my mother was pregnant with her first child she developed toxemia. She had an emergency cesarean section and learned that my brother’s umbelical cord was wrapped around his neck. He might not have survived if she’d had a vaginal delivery. Her subsequent five deliveries were unremarkable except for the fact the next four came in rapid succession and she wasn’t planning on any of us.

I remember my parents often saying how lucky they were that all of us were healthy considering the odds of something going wrong in a family as large as ours. Apart from my sister Caron’s hernia, my brother Scott’s impacted wisdom teeth, Alan and Matt’s hernias, Matt’s broken foot due to a pole-vaulting accident and my broken arm, we all grew up enjoying stellar health. Must have been all of the oatmeal mush and Hamburger Helper my mom made for us.

In stark contrast, Calvin has had significant neurological health issues since before he was born which have manifested in cerebral palsy, hypothyroidism, serious ocular and cerebral visual impairments, global hypotonia and—worst of all—intractable epilepsy. In the space of this past month Calvin has had to endure two x-rays of his abdomen, three enemas and a colonoscopy prep to evacuate what the x-rays revealed was his severely impacted bowels. He’s had a kidney sonogram to follow up on some hypercalcified sludge that has formed in them that could lead to kidney stones. In the same time span he’s had multiple visits with his pediatrican plus appointments with the endocrinologist, the nephrologist, the optician and, in Boston, the neuro-ophthalmologist and the neurologist. His impacted bowels are apparently causing him pain, discomfort and serious agitation in addition to acid reflux so bad it's likely to have caused painful esophageal ulcerations. And, to add insult to injury he has suffered two three-minute tonic-clonic (grand mal) seizures, not to mention the constant stream of antiepileptic drugs we stuff into him every morning and every night which exacerbate all of the above.

With Calvin, if it’s not one thing it’s another. And what makes it so difficult—so miserable—to witness is that he can’t tell us what is wrong. I often wonder how he manages, how he copes with almost certain distress from any variety of his ailments; maybe because Calvin doesn’t know what feeling really good really feels like.

But I guess what it comes down to is that Calvin is a fighter to the core. He never gives up, doesn’t know how. And, as one of our dearest friends fondly nicknamed him once, he’s a mother-effing-badass. I couldn’t agree more.