4.30.2012

melancholia

It’s been haunting me for days, this Melancholia. I can’t seem to get it out of my head—not that I want to.

In the opening sequence, the film’s orchestral score sweeps me up then drags me under. Kirsten Dunst’s pained expression—eyes half-mast as if dead, hair dripping—ropes me in with the birds and dark matter falling from the sky. A Hitchcockian moment, the scene morphs into a series of super-slow-mo canvases—rich, surreal, botanical, like oil paintings—mingling with celestial panoramas. I feel gravity's pull, the essence of depression tugging at me like the grimy swathes shown entangling the bride’s wrists and ankles, and the weighty steps of a desperate mother hugging her boy across her chest. Just like I sometimes carry Calvin, I think, especially when he is having a seizure, trying to find some safe haven.

I sensed that the world might end—planet Melancholia perhaps slamming into the earth—and I understood the bride’s despair that dampened and soiled her billowy white chiffon. But what I hadn’t understood was exactly why I couldn’t stop thinking about the film—its images, its characters, its music, its ending—kept rolling them over in my mind like a handful of stones.

A few mornings later, over a cinnamon roll and a perfectly round coconut cream moon, Michael and I revisited the film. We sat across from each other in a booth near the window of the little storefront donut shop. I told him that Melancholia had stayed with me ever since we’d seen it several nights before. I explained how I related to the character, Claire, as she carried her son alone across a field, each step sinking knee-high into soggy turf, trying in vain to escape obliteration. I wondered how I’d feel if I knew that doom was approaching with the ferocity of a hurtling mass, wondered what I’d do.

“But wouldn’t we know years in advance if a planet was headed toward the earth?” I asked.
“Yes, Michael replied, then reminded me, “but Melancholia had been hiding behind the sun.”

He explained that Melancholia was allegorical, and as he did I realized I’d foolishly missed it—its painfully obvious metaphor for despair, grief and loss that seem to come out of nowhere. “Just like Calvin,” I remarked, tears welling up in my eyes as I licked coconut glaze from my lips. I reached across the table to hold Michael’s hand whose clear blue eyes appeared moist and edged pink. “Yep, just like Calvin,” he added, and I cried for our boy—and for us—hit so hard with illness, suffering, debilitating conditions, epilepsy and its heinous treatments.

We went on to talk about how everyone has their own Melancholia that suddenly appears, bringing us to our knees. For some—like us—it comes in the form of an ill child. For others, it’s the loss of a job, the passing of a parent, sibling, spouse or partner, a terminal disease, a chronic condition, an abusive relationship, a divorce, the death of a child. We cannot escape, none of us.

And so I ate my last piece of donut in relative silence, tasting nothing but a thin, greasy film on the roof of my mouth, thinking about Calvin's clear blue eyes, like two celestial orbs reflecting all of my grief, loss and fear, but also my salvation. We're two planets colliding, I lovingly thought, Calvin: my own little Melancholia, my moon, my star.

To view the opening scene of Melancholia, click here.

Please share Calvin's Story. Help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
 
from Melancholia, directed by Lars von Trier

4.29.2012

woman who walks alone

The Woman who follows the crowd will usually go no further than the crowd. The woman who walks alone is likely to find herself in places no one has ever been before.
 
—Albert Einstein

photo by Michael Kolster

4.28.2012

who cares?

This morning I read about a five-month-old baby girl, Avery, who was recently diagnosed with a genetic disorder called spinal muscular atrophy (SMA.) She has been given only eighteen months to live. Her father started a blog, written from Avery’s perspective, and in less than a month it has gone viral and racked up over a million page hits (it has doubled in the course of a few hours) from sympathetic readers. Her Facebook page has over 60,000 likes.

SMA affects about one in 6000 US births, which means that about 20,000 American children have it, 1000 being stricken with it each passing year. It is a terrible reality that no parent or child should have to face, and Avery’s parents are telling the world ... and the world is listening.

My eight-year-old son Calvin has suffered from epilepsy for over six years now. In the US epilepsy afflicts about 300,000 children and as many as 3 million Americans and their families. That’s one in one hundred people. It affects more people than cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease combined. Epilepsy and related deaths such as drowning, head injuries and burns, account for an estimated 50,000 deaths annually, which is more than from breast cancer. People with epilepsy who survive the scourge are destined to a life of seizures and/or terrible side effects, stigma, job loss, loss of independence, emotional and financial burden, developmental delays and discrimination, yet somehow so few know—or seem to care.

I feel for Avery, for her parents and for what they must have to cope with knowing on a daily basis ... that their precious child has such a brief period of time with them on this earth. At the same time my blood is boiling as I write this wondering WHO CARES about epilepsy when it is such a major health problem that garners so little attention ... even as children are dying? What has to happen to arouse people's compassion? How many have to suffer to rally the masses? Who needs to die to make this urgent message go viral? I hope it won't have to be our own little boy Calvin.

Please share Calvin’s Story and help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time.

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

photo by Michael Kolster

4.27.2012

friday faves - underdogs

I’ve always rooted for the underdog—the tortoise instead of the hare, the second-seat swimmer, the under-privileged kid, the young “inexperienced” idealistic presidential candidate, and now, my disabled son whose intractable epilepsy—and equally so, its drug treatments—exacerbates his condition.

In the summers of my high school and college years I coached a couple of swim teams in Washington and Oregon. My favorite was a golf and country club team that had a history of hanging out comfortably at the bottom of the twenty-team league. On the first day of workouts, at the modest outdoor pool with its mini snack bar, about thirty kids showed up, most of them straggling onto the deck late, towels casually hung around their necks. That day we had fun playing pool games like sharks and minnows. I encouraged them to invite their friends to join, whether they had swum on a team or not, and posted flyers enticing young would-be athletes. Within a couple of weeks 140 kids between the ages of four and eighteen, some barely younger than I, were swimming laps in the wavy lanes each morning.

I demanded a lot from my swimmers, and in return I worked hard for them, staying up until the wee hours of the morning strategizing unbeatable lineups for meets. The kids put in their best effort, were devoted and punctual because they knew I expected nothing less, and they delivered.

One rule I had for each swimmer was to compete in every single event offered in his or her age group. At the last home meet of my first season, I was sitting on the hot deck by the side of the pool, surrounded by little kids, my clipboard in hand. One of my ten-and-under girls shyly approached me. She said, “coach, Jenny doesn’t want to swim the 100 I.M. She says she can’t do it.” I told the girl that I had complete confidence in Jenny and I wouldn’t scratch her from the event. If Jenny chose not to swim, I said, then it would have to be her decision. The girl disappointedly sulked away.

A few minutes later I watched little Jenny hesitantly step up onto the slanted block, her big suit sagging off of her skinny frame. Flanking her were just two other girls, the outside lanes empty. The starter fired his gun and the swimmers flopped into the cool blue water. Butterfly. Backstroke. Breastroke. Freestyle. The three flailing contenders kept edging each other out during the suspenseful race. In the last few yards Jenny, neck and neck with the others, poured it on like I had taught her to do, and nailed the finish hard touching out the other girls. The image of her gasping for air with sheer surprise and glee on her face brings me to tears as I write these words. She was so proud of herself. She was the underdog, and not only did she do what she didn’t think she could, she had won her first blue ribbon.

Our team rose up through the ranks to second place in the league that year, all of us mere underdogs. I think of that summer and of that special group of kids often, particularly when I am with Calvin, coaching him to amble upstairs, to climb onto the couch, step into the bath, pull his shirt over his head and walk where he doesn’t want to venture. I know if I expect a lot from him and encourage him to never give up that, even in the face of seizures and debilitating drugs, he'll try and deliver. And he does. My little underdog Calvin is a true winner.

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

photo by Michael Kolster

4.26.2012

andrew's story

Written by Sharon and John Wentz, Andrew's parents

Sudden Unexplained Death In Epilepsy (SUDEP): No one told us ... nothing prepares one for opening the bedroom door and finding their most beloved treasure gone. Nothing. Our only child’s life essence gone.

Andrew’s story begins in St. Petersburg, Florida, born as “Andrew John Wentz” on August 6, 1986. Andrew had the usual upbringing of two working parents—John, an undercover police detective, and me rising the nursing ranks at the local Children’s Hospital. He had the pleasure of spending lots of time with many loving people—grandparents, my sisters Diane and Jennifer, and great baby sitters “Ma and Ba.” Nothing out of the ordinary ... just a kid that did have incredible balance, who we would find climbing and doing a balance beam act on anything he could find!

As Andrew grew and matured he did the usual guy stuff, tee-ball and soccer. Andrew excelled at soccer, spending summers at the local college soccer camp. He had the privilege of spending some great summers with his grandparents in Pennsylvania; we would pack his bag and off he would go on the airplane. Andrew loved to go out to dinner with us, and enjoyed trips to Germany and France. He attended different schools of all creeds and colors, and at an early age, we could see that he truly was always defending the underdog. He loved animals, and we had dogs, horses, birds, and a cat.

We began to take ski trips to Taos, New Mexico in order to decompress from our work. Andrew became an amazingly proficient skier for a kid raised in Florida. John and I found his ability truly remarkable. He won NASTAR racing medals, and just made truly beautiful tracks in the snow. John would wildly ski the slopes and Andrew would follow behind, I think to be sure that his dad survived in one piece. I loved to ski in Andrew’s tracks because they felt so free and natural.

But one day after a ski trip, Andrew had his first grand mal seizure and was diagnosed with Simple Partial Epilepsy. He was 11. It was idiopathic in nature—no reason, no family history, it just was. We spent many years trying to determine the right drug combination that would allow him to function cognitively and physically. Eventually the drama settled, but not without trauma to Andrew. Seizures in the classroom, seizures on the soccer field, episodes that truly diminished his self-esteem. He did all he could to not let anyone know that he had epilepsy.

Subsequent side effects of the medication began to raise their ugly heads—problems memorizing, remembering, and just an overall decreased zest for life. Through it all Andrew continued to persevere . . .

Andrew made it through high school, but with the issues of not being able to drive or socialize on a normal timetable. He always tried to take it in stride and seemed to gravitate to some great friends that he could count on. Finally, he had a period of time where the seizures subsided; he still needed medications, but was finally able to drive at age 19. This was truly a turning point for Andrew that gave him the freedom he so needed after high school.

Community College was the next step, but the grades weren’t coming without great stress and feelings of inadequacy. Through the grace of God, someone mentioned to me Job Corps, and we followed the path that took Andrew to the Wolf Creek Job Corps program. Despite ups and downs, good times, bad times and sometimes feeling that he needed to leave, he stuck it out. We had many talks about his gentle soul, his kindness toward others and how he would make a good Certified Nursing Assistant. He followed this path and it took one year, and two difficult and frustrating tries to get through it. He finally graduated the week of his death.

Andrew came home a mature, grown man in mind, body and spirit thanks to the amazing work by Job Corps, and the faith our family had in his ability to succeed on his own timetable! He was happy and said to me, “Mom, I just LOVED my clinicals.” He had intentions of returning to Job Corps to continue after his vacation at home. I was able to hug him and get him settled in for what I thought would be a comfortable night. He told me that he was very tired and wanted to sleep in. The following day, August 22, 2009, I was faced with a parent’s greatest fear and pain—having to open the bedroom door….

Andrew will live in our hearts forever. We were asked to give our most treasured gift. I promised Andrew that I would continue to share his essence in my life’s purpose and nursing work. So here it is for the sake of a cure for epilepsy. Unfortunately, there was no cure for our beloved son. We had Andrew for 23 glorious years. He was a quiet, shy, kind, and gentle spirit—like no one I have ever known.

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

Andrew




4.25.2012

out of reach

Every summer when I was a kid my father hitched the trailer to the back of our olive green Suburban and set out on vacation. My mother spent days preparing food for the trip and packing essentials like towels, cooking supplies and dimes for the shower. Sometimes our destination was the Washington coast or the white hot Oregon Dunes, but one of our favorite spots to land was Sun Lakes in eastern Washington, a three-and-a-half hour drive from home.

I often brought a friend along and we passed the weary journey lying on blankets in the back of the truck playing cards and telling jokes. The drive was hot and arid, winding through desertous terrain, craggy vertical bluffs rising high above the narrow road on one side and cascading steeply down the other into a meandering green-black river. We’d reach the park in the afternoon, and as my parents set up camp my brothers and sister went to jump the cliffs and my friend and I, though we were only ten or so, were free to go off and explore a nearby lake.

Barefoot in our bathing suits, we walked on a rocky path watching hopefully and intently for snakes, our feet and ankles powdered in a fine ruddy dust. The base of the path widened and spilled out onto a small, sandy outcropping at the water’s edge, sprouting tufts of sturdy grasses and a shady poplar tree. We dipped our toes in first. The water was clear and pleasantly warm, having been bathed in the sun for weeks on end. Carefully, we slid out on the smooth, slimy moss-covered rocks, gripping with our toes and balancing ourselves with outstretched arms, as if on a tightrope. Several yards out it remained shallow. Golden-green milfoil tickled our calves as it gracefully waved just below the water’s surface, which was glassy and adorned with the sky's billowy white clouds.

Soon we were joined by a lithe little girl of about four wading on her own, her watchful parents several yards away chatting with another couple. The child slipped on the slick shallow outcropping and plopped, just barely under the water. Time stood still. She remained motionless except for her wavy blond hair undulating and mingling with the milfoil, her arms floating at her sides, her ivory skin contrasting sharply and sickeningly with the dark submerged rocks. She was almost within our reach, but we stood frozen in shock. Within seconds an adult splashed clumsily to her rescue, yanked her up by her arm and held her as she gasped and cried. My friend and I stood by utterly paralyzed and helpless.

I experience these same feelings when I watch Calvin have a seizure. He is just within my reach but there is nothing I can do to help. I can only stand by and watch from where I am, paralyzed and powerless. Only when it ends can I scoop him up, sometimes while he's still gulping for air. I just hope one day he doesn’t drown amidst the surging electric waves that rhythmically lap against his precious brain and from which I cannot rescue him.

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

Originally published 2.28.11. 

photo by Michael Kolster

4.24.2012

nicole's epilepsy

Written by Lacey McLaughlin, Staff Writer at The Dayton Beach News Journal, April 24, 2012

PORT ORANGE, FL—Nicole Newbern doesn't remember her body convulsing as she hit the concrete outside her home.

When she woke up with a bruised and bleeding face on that January day in 2011, her boyfriend explained that she had suffered yet another grand mal seizure.

In 2008 doctors diagnosed Newbern with epilepsy—a neurological disorder that forced her to move back in with her parents and put her future career plans of becoming a nurse on hold.

That same year, Newbern suffered her first seizure a week after she completed coursework at Daytona State College to become an EMT. She was working full time as a cashier at Walmart and after suffering several seizures at work, Newbern said her employer let her go because of missed time. The seizures come with little warning and Newbern suffers an average of two-to-three minute-long seizures once a week. The disorder also causes her to have partial seizures, nonconvulsing seizures called absent seizures and hand tremors. Shortly after her diagnosis she fell into a deep depression.

"You feel a rage when everything gets taken from you," the 23-year-old Port Orange resident said. "I can't take a shower unless someone else is home. I can't drink out of a glass cup because I might have a seizure and fall on it. I couldn't have a drink on my 21st birthday because of my meds."

Tired of the stigma that's often associated with epilepsy, Newbern started a Facebook page to document her daily struggles. A photograph of her resembling a defeated boxer appears on her page. Some of her followers also took her cue, posting photos of their own post-seizure wounds: An elderly man with a black eye, a little girl with a broken collarbone, and others with busted lips or bruised faces.

"The picture shows that epilepsy is dangerous—not only in the fact that my brain is shutting down temporarily, but that my environment is dangerous all the time," Newbern said.

For people who are embarrassed about their disorder or trying to keep it a secret, she posts their questions anonymously to help them find answers about the disease. The Facebook page, "Nicole's Epilepsy," now has 1,625 followers.

"Thank you for making this page," a follower from Shreveport, La., wrote on April 13. "It makes me feel not so alone to know people go through struggles like I do every day."

Newbern said she identified with the people who were experiencing similar setbacks.

"At first I wanted to run and hide from it," she said. "A lot of people have really good questions, but they are shy and don't want to use their names. I get so many questions I can hardly keep up."

Newbern is one of 2.7 million Americans who suffer from epilepsy, according to the Epilepsy Foundation of Florida. As with 30 percent of those with the disorder, doctors have not been able to control her seizures with medical treatments. A study by the Institute of Medicine released earlier this month found that one in 26 people may develop epilepsy at some point in their life.

After accumulating more than $62,000 in medical debt and suffering from the disorder for three years, Newbern qualified for Social Security disability benefits. She can't drive or be left alone at home. Her stepfather, who works nights, stays with her during the day.

Newbern recently went through neurological testing at Shands at the University of Florida's Epilepsy Monitoring Unit in Gainesville where doctors attempted to pinpoint exactly where the seizures occur in her brain. Through the testing she was able to adjust her medication, which has helped ease her partial and absent seizures.

Art became an important outlet for Newbern to deal with her disorder. She uses her parent's garage as a studio where she paints, makes journals and sculpts. She also makes jewelry, which she sells to raise money for the Epilepsy Foundation of Florida.

On Saturday, the Epilepsy Foundation will honor Newbern for her advocacy in the epilepsy community during the Walk the Talk fundraiser at Mary McLeod Bethune Beach Park in New Smyrna Beach.

"She has done a complete 180 from the date of diagnosis to where she is now," said Epilepsy Foundation of Florida case manager Ericka Kaelin. "She is still struggling to gain seizure control but she doesn't let that get her down."

Please visit Nicole's Facebook page: https://www.facebook.com/NicolesEpilepsy
Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Nicole Newbern's wounds sustained during a seizure

4.23.2012

alone

Alone the other night—Michael having gone out of town again—I sat down for a rare viewing of the PBS News Hour with my rewarmed pesto pasta and a glass of red wine. Calvin was in the room next door, cooing and shrieking and no doubt biting the netted canopy above his bed and/or its vinyl padding. I’d just put him to bed after suffering through some of the loudest screams I’ve ever heard him make. Regrettably, I managed to make one or two (or three) myself.

In the dark room on the television screen a young man with wavy hair and dimpled cheeks reported on the weather. A student meteorologist, his delivery was confident, though unpolished, which was part of his charm. I found myself rooting for the lanky weather man as he gestured and remarked on the expected temperatures and the possibility of rain. He ended with a big smile that took a chunk out of my heart realizing how I’ll never be the proud parent of a boy like that.

I ate my noodles and sipped my wine in relative silence as Calvin drifted off to sleep. Several of my favorite talking heads appeared and began imparting intelligent details about the latest headlines. The journalists covered stories about the economy, the presidential race, singularity, and the future of technology. They ended with a sickening story about an unarmed man arrested, beaten and tasered to death—murdered—for attempting to reenter this country illegally to join his family in San Diego.

The man, who was handcuffed and hogtied, was kicked and clubbed and tasered five times, once as long as twelve seconds as his body convulsed, his brain in seizure. The video and eye witness accounts proved he was in no position to resist the border patrol officers who, in my mind, were no more than cowardly, bullying criminals themselves. He died from a taser-induced heart attack leaving behind his wife and several small children. And although he was doing something illegal, I don't call that justice. I call it hateful.

I thought about the immigrant and his family, about how he cried for help, about the dozen or so officers that swarmed around him like a pack of wolves hungry for flesh. Then I meditated on Calvin, all tucked in and warm sleeping in the room next door under the sedating wash of his antiepileptic drugs. I thought about how lucky he is to be alive, to have a father, to be fortunate enough to have been born into a family of relative privilege. I thought about the hell that I felt I’d been living an hour or so prior during Calvin’s screaming ... how that was really no hell at all ... how I should be thanking my lucky stars and hoping for better lives for those around me, for those who are simply trying to eke out a better life for themselves and for their kids.

And I went to bed alone that night just like that poor man's widow, and yet not like her at all.

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

photo by Michael Kolster

4.22.2012

earth day

On this, Earth Day, as I look outside my rain splattered windows, the bark of trees blackened with wetness, the green leaves shiny and slick with a smattering of pink, white and purple flowers, I am reminded that there are few things in this world that give me as much joy as gardening, as working with the earth.

I come by this bliss naturally ... from my father and perhaps from his parents and before. Together we tended his vegetable garden sporting rake, shovel and hoe, trowel and hose. My little hands swam in an unmatched pair of ratty suede gloves. It seemed to me that Dad stood nearly twice my height and stooping for long periods ached his back. He’d straighten himself up, satisfyingly arch and turn his face toward the sky. Together we pruned and planted and weeded and watered and harvested. He’d pat me on the back then rest his hand on my shoulder. Sometimes he’d say, “You know I love you, don’t you, kid?” Those were sublime moments—the two of us drinking up what the earth had to offer.

Sadly, my eight-year-old son Calvin can’t help me in the garden. The drugs he has to take for his epilespy—along with the seizures themselves—have stagnated his development, have left him in a virtual limbo somewhere between infant and toddler. He wilts in the sun while simultaneously staring straight at it instead of looking where he is going. Without Mama at the helm, he’s liable to run straight into a shrub or tree. I’ve been thinking of outfitting him with helmet, face guard, knee-pads, elbow-pads and wrist-pads and letting him stumble around the yard as I play interference. I’ll still have to remain close by to ensure he doesn’t step into an errant Rudy bomb, crash into a rock wall or try to devour a pine cone.

And even though we won’t be working the earth together like my father and I did, on sunny days Calvin and I can still snuggle in the soft grass under blue skies and billowy clouds or in the shade of a leafy tree and—like I did with my dad—find contentment in simply being together on this most beautiful place we call earth.

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

Dad picking raspberries in his garden

4.21.2012

compassion

Compassion is an unstable emotion. It needs to be translated into action, or it withers.

—Susan Sontag

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

4.20.2012

friday faves - pint-sized monster

Sometimes I can’t believe I have a retarded kid. He hasn’t yet been officially diagnosed as such, but it is a fact that his development, both mental and physical, is retarded—delayed. And that developmental gap continues to widen as his vicious seizures persist and as long as he is sentenced to a life of taking potent, mind-altering, developmentally disabling drugs.

At times, when Calvin becomes hysterical, regarding him nearly makes me ill, especially when he screams with that vicious, crazy look in his eyes. Furrowed brow, snapping his fingers incessantly, I hardly recognize him. At these times he won’t shut up. When he is like this he does not appear human, but more like a rabid beast howling—a pint-sized toothy monster—and it is difficult to bear. Lately he is like this a lot.

I find myself either staring in disbelief at my little aberration or averting my eyes and trying somehow to drown out the irritating and endless stream of piercing screeches that emerge from between his clenched and grinding teeth. I can’t tell if it’s excitement, over-stimulation, discomfort or simply wanting out of his high chair, car seat, crib or jumper. I do, however, know the antidote—though at times I lack the energy—which is to pick him up or walk him around, his harness secured and tightly in our grasp to prevent a bad fall. He instantly morphs into the kid we know and love, happy and smiling as he explores the house, plays with his rattles and toys and tries to chew on everything he can get in his mouth.

I believe the origin of Calvin’s mania is drug-induced. I can only hope it is a reversible condition if he can ever come off of the medications and be free of seizures. Until then, and at moments, we have a three-foot tall affectionate little elfin monster on our hands who is growing by the day.

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

Originally published 3.11.11, and still true today.

4.18.2012

my charade

Written by Madeline Curtis, 14, Margot's sister

When Margot goes into a seizure, all I can hear is her gasping. I look up, and her arms are held tremulously in front of her, palms flipped upward. Her eyes are faraway, fixed on something that only she can see, and she looks blank, so different than how she usually is. I look away, because it scares me too much to see her like that, to be faced with the terrifying reality of her condition. It’s easier to convince myself that everything will be fine.
          
I can remember horrible days filled with seizures, how each gasp poured another drop of ice down into me, until I felt like I was full to the brim with frigid water, slowly going about my daily routine. My charade kept me calm on the outside, which is how I like it to be. I pretend ignorance, because maybe, if I try hard enough, my naivete will become the cure, and her pain will end, bringing with it a new beginning.

Madeline and Margot

4.17.2012

humble tasks

I long to accomplish a great and noble task, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker.

—Helen Keller

4.16.2012

mockingbird

This is the time of year when, again, birds start gracing our presence. I’ve spied yellow and gray goldfinches drinking from the birdbath and large black crows chipping ice out if it in the early morning or dipping crusty bread into the melted water. Within the lattice of our naked burning bush I’ve spotted a male cardinal perched like some ripe crimson apple waiting to be plucked. A black and white speckled flicker taps staccato on a scaly branch just outside the window from my desk.

Yesterday, while walking Rudy on a wooded path we found ourselves surrounded by chirping sparrows and warbling catbirds—the exotic sounds of spring in Maine. These sweet songs reminded me of a favorite movie I recently watched with my sister, To Kill a Mockingbird. The classic 1962 black-and-white film stars Gregory Peck as small town attorney Atticus Finch, and is based on the novel of the same name by Harper Lee written a few years before I was born and that I’d enjoyed reading in junior high.

Gazing down at the bark trail I regarded my untucked plaid shirt and dirty jeans. I thought how, in many ways, the film’s wiry six-year-old tomboy, Scout, reminded me of myself at that age, even sharing the same pug nose, mine turned up with a permanent crease from habitually wiping it upwards with the heal of my palm. While watching Scout scamper around in her pixie haircut, denim overalls and canvas sneakers I had quietly relived my childhood days of exploring nearby woods with my brothers, climbing into their homemade tree forts, digging up old bottles and rusty treasures and playing hide-and-seek. I remembered the time my brother Scott got shot in the leg with a BB gun at close range and how I thought the silver bead looked odd embedded in his muscular thigh like a pit in peach flesh.

Partway through the film Atticus tells Scout and Jem about owning his first gun as a boy:

I remember when my daddy gave me that gun. He told me that I should never point at anything in the house and that he'd rather I shoot at tin cans in the backyard. But he said that sooner or later he supposed the temptation to go after birds would be too much and that I could shoot all the blue jays I wanted, if I could hit 'em; but to remember it was a sin to kill a mockingbird. Why? Well, I reckon because mockingbirds don't do anything but make music for us to enjoy. Don't eat people's gardens. Don't nest in the corn cribs. They don't do one thing but just sing their hearts out for us.

Somehow that scene made me think of my son Calvin. He doesn’t—can’t—get into too much trouble. Doesn’t bother other kids or pets. Doesn’t cause mischief. He just grunts and coos and giggles (and screams at times but that's the drugs) and gives us hugs and kisses and smiles and then some more hugs. Our little Calvin ... he’s like a song.

A few years back I heard part of a story on national public radio. It was about a single mother (my friend prefers the apt term “head of household”) raising a severely disabled child with the help of government funds to aid her arduous and expensive responsibility. A caller remarked on air about how much he resented his tax dollars funding what he coined “a lost cause.” His words stung and made me think about some countries that, perhaps even today, might systematically euthanize kids like Calvin or, at least, choose to let them wither and die. What makes a life valuable? I thought. Surely the caller had never known or valued—or loved—a child like the one he’d have society abandon, a child like Calvin.

In the film a kind soul had been anonymously leaving Jem gifts and trinkets in the knotted hollow of an old tree: a tarnished pocket watch, two carved soap figurines resembling Scout and Jem, a medal. That same kind soul saved the children’s lives from a menacing stalker one dark night while the two kids walked home on a wooded path. Their hero was Boo Radley, the “simple-minded” recluse neighbor who’d been secretly watching over the motherless children all their lives, keeping them safe, keeping them in his heart, secretly bestowing precious gifts upon them. Upon discovering her humble protector shyly cowering behind a door, Scout sweetly likened silent Boo—with his rumpled clothes, pekid complexion, dark sunken eyes and tussled hair—to a mockingbird.

Calvin is our mockingbird, I thought. And I hope he keeps singing for a long, long time to come.

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

4.15.2012

nothing sadder

Every once in a while I have a day where I think about those parents, some whom I’ve known personally, who have had to resort to putting their disabled children into institutions and homes—hospitals, nursing homes, group homes—because the kids were simply too much to handle. Today was one of those days.

As Calvin grows he gets stronger and exhibits his will, which is generally a good thing. The biggest down side of this kind of development, though, continues to be the frigging anticonvusant medications (three of them) that he must take in an effort to control his seizures, albeit unsuccessfully thus far. They make him aggressive (though not malicious) and hyperactive beyond belief—both things that I have a hard time dealing with physically and emotionally. To add insult to injury is the fact that the drugs also cause his balance to be ridiculously awful rendering me his constant crutch, his human safety net.

Lately, when I put Calvin on the changing table he emits such high-pitched shrieks that they pierce my ears as he spasmodically flaps and writhes, straightens and kicks. All the while I attempt to change his diaper and try to keep him from dunking his flailing hands into his shit. I imagine at some point I’m going to need a straight jacket (perhaps one for each of us) because, with each passing year of near stagnant development, it’s looking more and more likely that Calvin will never be potty trained. But I remain skeptically hopeful, which is not quite the same as cautiously optimistic.

So, I found myself in tears again today, the result of being up to my eyeballs drowning in our pathetic situation. I tell you, it feels to me that there’s nothing in the world sadder than having a beautiful, beloved, sweet, loving and affectionate child who has a horrific, chronic, nearly hopeless medical condition, like epilepsy, where the treatments—the drugs—seem as bad as the symptoms that they attempt to mask.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It's our only hope.
Give to cure epilepsy: http://www.calvinscure.com

4.14.2012

it takes a village

They must have somehow had Calvin in mind when they said, “it takes a village to raise a child.” For the past nearly three weeks since Michael has been gone I have seen proof that the proverb rings true. You see with Calvin, who not only has epilepsy but is completely hands-on and in many ways like an infant-toddler though he is eight, most any task is nearly impossible without a second set of eyes, ears and hands.

For the first eight days after Michael’s departure my sister joined me from San Diego. She helped me from soup to nuts and then some. A few days later my friend Akiko flew in from New York and aided me with more of the same ... kept me fed, kept me sane, kept me out of trouble.

Since Akiko’s departure last Monday, and particularly since I haven’t had a nurse to help these past few days while Calvin’s been out of school, it has been a bit—shall I say—monotonous, taxing, draining, frustrating and, at times, lonely.

Luckily, my friend Sarah came by for dinner the other night ... Jacob’s mom. She and I share many things in common aside from our (for lack of a better word) disabled or “special needs” boys. Simply put, she gets me. It’s like we live parallel universes: same worries, same struggles, same triumphs (when they happen.) For the good part of four hours we gassed on over a smorgasbord of delectables that she bestowed upon us—pâté, three cheeses, Greek olives, prosciutto, roasted peppers, pickled artichoke hearts, bread and crackers and wine—until I felt a sublime weariness sink into my eyeballs.

The next day my friend Jerry brought me a homemade mini pear tart and Barry dropped off an almond croissant, both just to let me know they were thinking about me while I was flying solo. Maura left a jar of homemade greens and lentils behind the door and my friend Matt checked in by phone just to make sure there wasn’t something I might need. He pretty much does that every time Michael is away.

Late yesterday morning under sunny skies I took Rudy and Calvin for a walk. Calvin rode in the stroller most of the way but got out to stomp around aimlessly—his hand or harness in mine—through a thin stand of trees flanking the college Astroturf field. He seemed to enjoy touching the netted barrier at the end of the field, feeling the coarse gravel under his feet, and exploring the vast and endless aerated lawns. Once home, I left him in the stroller while I watered the thirsty plants withering in this bone-dry Maine spring. Calvin kept craning his neck to stare at the sun then yanked off his glasses and lunged so far to one side so as to nearly topple the stroller over completely. All the while the damn hose kept kinking. Angrily, I dropped the F-bomb—twice and hard—cursed at poor Rudy for wandering into the neighbor’s yard and, regrettably, had to abandon the watering. Hoisting Calvin out of the stroller I glanced at two young boys passing by. One, who couldn’t have been much older than Calvin, was tossing a ball in the air and catching it as he ambled up the street. The boys were busy chatting, their sneakers happily slapping the pavement in unison. Frustration and torment set my eyes afire and stinging until tears welled up and gushed over my screwed up face. I saw life with Calvin flash before my watery eyes, a life that barely moves most of the time and, pressing my moist lids, I wished for him and for me that he could be that boy.

But just as we passed the threshold the phone rang. It was my friend Maura checking in on me again. It was clear that she could sense the dismay in my voice and knowing that shattered me further. Silently, she listened to me sob and grieve, then she gently validated my frustration, hardship, despair and loss. I slowly regained my composure and thanked her for the greens and lentils she’d dropped by earlier. She stopped by today with a few groceries and to help be my second pair of eyes.

Not long after Maura’s call, Lucretia came by, looking all cute in her dirty canvas pants and worn out old Converse sneakers. She—who has four kids of her own—started a load of laundry, folded a mound of clean clothes that had been staring me in the face for two days and walked Calvin around the yard while I finished watering the plants.

Then Meggan visited with her sweet little Nola. It felt so nice to have their company. She got out the stroller and took Rudy by the leash, rendering me hands-free to do damage control with Calvin as we strolled. By this time I was feeling nearly one hundred percent better.

Today, as Maura was leaving John brought pizza and kept me company on a nice drive to Harpswell. Then for dinner I get to enjoy homemade sushi hand rolls a la Luke and Sarah. On Sunday Lucretia and Meggan, and perhaps even Jen, might stop in again and then on Monday Michael comes home.

Like I said, it takes a village to raise a child ... especially one like Calvin. And because of this wonderful village, I think that I’ll survive.

Just a few of my village peeps

4.13.2012

friday faves - roller coaster

There are a few scenes in one of my favorite movies, Parenthood, that always move me no matter how many times I watch the film. In one scene Gil, a middle-aged father played by Steve Martin, is complaining about his complicated and stressful life when Grandma enters the room. Seemingly unknowingly she interrupts saying:

You know, when I was nineteen, Grandpa took me on a roller coaster . . . up, down, up, down. Oh, What a ride!

Gil responds indifferently as she continues:

I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.

This ride we have been on with Calvin sure ain't no merry-go-round. Although our day-to-day routine is now often monotonous we have been through cork-screw turns and vertical climbs only to plunge head first into depths with such force it was hard to know whether we could hold on; all this because of Calvin.

Grandma's story struck a chord with me the very first time I heard it over twenty years ago. I've not expected or hoped for my existence to be mapped out and predictable but rather regard uncertainty as an adventure to relish. And because of Calvin I have been fortunate to experience, and honor, the full depth of my emotions, from utter despair to the kind of sheer joy that I otherwise may never have known if it weren't for him.

I too prefer the roller coaster to the merry-go-round; that ride just makes me sick.

Originally published 10.24.10.
photo by Michael Kolster

4.12.2012

just another one of those crazy days

It’s just another one of those crazy days. Neko woke me up this morning at about four o’clock. Nice. I had to toss her out of the room when she jumped up onto Calvin’s bed which, over the baby monitor, sounded to me like an earthquake. She was angling to get in and snuggle with him or perhaps to sleep on his face. I managed to fall back to sleep for a spell until Calvin woke me before six with his happy shrieks.

Heading downstairs in a fuzzy pre-coffee daze, I stepped gingerly over all of the area rugs that Neko, in her nighttime mania, had balled up into woolen waves on the slick hardwood floor. I nearly stepped on her in the kitchen because—all stretched out like the Queen of Sheba—she never moves out of the way. “Wabbit,” I said to her, “your guts are gonna come out of your mouth sometime if you’re not careful,” just like Michael likes to say.

Rudy joined us, I fed the "guys," warmed yesterday’s coffee, set out Calvin’s medicines and prepared his breakfast. Calvin’s shrieks practically broke my eardrums, the baby monitor hanging next to my ear from a ribbon around my head. With Neko around I can’t carry the monitor in my hand or she’ll swipe at the ribbon like she did the other day, practically mortally wounding me, her sharp claws embedded in my thigh. “Wabbit, you’re a pain in the neck ... lucky for you you’re cute.” I fumbled with Calvin’s meds and they spilled on the floor. Hurriedly, I gathered them up ... all but one—the benzodiazepine—half-wishing Neko would find it and take the chill pill she so desperately needs. Alas, I found it and set it aside for Calvin with his seven other anticonvulsant tablets.

Back upstairs I got Calvin out of bed. He greeted me with his world famous, heart-melting smile. I plopped him onto the changing table where he writhed and giggled as I changed his diaper, helped him into his robe and put on his slippers. Holding his hand we walked over to turn the light off. His balance was awful ... terrible ... pathetic. What the hell? I thought. I know I didn’t give him the wrong medicine at dinner. I wonder if he had a seizure in the middle of the night. We continued down the hallway and he balked then careened off balance. I started to worry. We reached the top of the stairs where he paused. Suspecting a seizure I peered at his face. Nothing. Then I looked down and saw that I’d forgotten to pull his pajama bottoms up! Yep. That was the problem. No crisis; just a mom having a total brain fart of a morning.

Up went the pajamas, down the stairs went Calvin, all by himself with a smile on his face, drooling and trying to bite the banister most of the way. At the landing, Neko managed again to avoid having her guts come out of her mouth. Rudy got to lick the yogurt container. Mama got her much-needed coffee fix. Daddy called from away to tell us he missed us and loved us. Calvin got off to school pretty much without a hitch, a big smile on his face with every wobbly, pigeon-toed step toward his school bus where Rudy was busy lunging for dog treats tossed out the door by Calvin’s bus driver. Happily, I thought, it’s just another one of those crazy days.

Neko

4.11.2012

4.10.2012

grief

Grief practically strangled me during the first few years after Calvin was born. Though we did not lose our child the way some unfortunate parents do, we suffered a great loss nonetheless. We lost—albeit never had—the pure joy of a healthy child. We lost the chance to delight in seeing our child run and play with other children. We lost the hopes and dreams of any parent whose child wakes up in the morning only to scramble into bed with them and beg for what the day might promise. We weren't even sure if our child would ever walk or talk or be able to feed himself.

At first I found it difficult to look at pregnant women. I felt sheer envy of what they were about to experience that had been robbed from me. Every time I visited the grocer I came home sobbing having seen countless bouncing babies sitting upright in their carts, locking gaze with me from afar, rummaging through their mother's purses with supreme dexterity or quite simply not crying, but rather taking in the experience as if it were honey. Life was so carefree and joyous for those mothers.

My child could not support his own head let alone sit in the cart. He could see only inches from his face and his beautiful indigo eyes jerked and roamed in their sockets. He could hold nothing and he cried and cried and cried. I loathed going to the grocery store for I couldn't avoid the painful, happy images that were looming around every corner. I felt this way for the two years leading up to Calvin's epilepsy diagnosis and for years afterwards. Sometimes I still feel the familiar sting.

Once, I received an alumni newsletter from my Alma Mater. On the cover was a photograph of a fellow graduate and her husband with their grade-school daughter and healthy nine-month-old quintuplets. All of the children were fat, happy, bright-eyed and glowing. To regard it nearly made me ill. I had to throw it immediately in the trash as tears streamed down my face. Calvin's home-health aid at the time, at seeing my reaction said something like, "you gotta get over it."

Don't let anyone tell you that there is a time-limit on grief.

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

Version originally published 10.19.10.

4.09.2012

normal?

The other day, when I was openly lamenting my son's condition, a medical professional who I've never met and who has never laid eyes on Calvin asked me a question that—regrettably—I know the answer to all too well.

"Christy," she said with an air of condescension, "are you aware that it is normal to stop breathing during a seizure?" My answer was as plain as the nose on my face and as bitter as the anticonvulsant pills we shovel into Calvin's mouth day in and day out, "I am aware it is common, but I wouldn't call it normal."

In my mind I thought, there's nothing normal about a seizure and its manifestations. Then I dreamed up some questions I'd liked to have asked her if I'd had the opportunity:

Have you ever seen a seizure? Have you ever seen a child having a seizure? Have you ever seen your OWN child have a seizure? Have you ever seen your child stop breathing for over two minutes during a seizure, as if being strangled? Have you ever seen your child have hundreds upon hundreds of seizures, stiffening, jerking, turning blue? Have you ever seen your child have a day filled with seizures? Have you ever seen your child have to be emergency intubated—screaming in pain and fear—the cannula that was one size too big being shoved in, then bloodily fished out of his throat? Have you ever had to restrain your child during countless unsuccessful, painful attempts at threading an IV, the needles bruising his delicate flesh? Have you ever seen your child have a forty-five minute seizure when you were so sure that he'd die that you started kissing him goodbye?

No? Somehow I didn't think so.

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

4.08.2012

adaptation

A good friend who I haven’t spoken with for a long time wrote to me recently. I think of him often and wonder what life is bringing his way. He mentioned how he wanted to talk with me but that, in reading my blog, he felt as if his problems were petty compared to what I was facing on a daily basis. I'm not sure.

If I’ve learned one thing since Calvin’s birth it’s that we, as humans, are incredibly adaptive creatures. I remember, before Calvin was born, driving with Michael along a winding road on the Bolinas Ridge just north of San Francisco. The narrow road snaked through densely wooded glens broken by pristine, wide, open seascapes and rolling, golden hills punctuated occasionally by a gnarled oak tree. While listening to the radio, we were not only captivated by the scenic beauty, but by a story about happiness. The story described a study that had revealed findings about human adaptation. It explained how—even in grave circumstances such as incarceration or physical debilitation—after an initial adjustment phase, individuals ranked their level of happiness on par with a control group. It seems it’s well within our ability to adapt and be happy amidst less than ideal circumstances.

I will say that life with Calvin has been grave at times. It is true that grief has choked me, frustration has frazzled my nerves, nights are often sleepless and worry abrades my spirit. But, so has raising Calvin been the most uplifting and rewarding adventure of my life. To love this child—who rarely looks me in the face, who cannot express his feelings in words, whose dreams I’ll never know—and to have this child love me back, unconditionally, is to feel an emotion impossible to adequately describe, but one that brings me joy and happiness beyond measure. I believe that my life, especially since Calvin, is a reflection of nature in its ability to adapt and find ultimate balance—a path not unlike the meandering road with its dark, obscure hollows juxtaposed with bright expansive heights.

So, too, has the strain of raising Calvin heightened my sensitivity to the burden of others. I imagine that floating down a raging river through coarse, magnificent rapids might feel treacherous to some, while for others, the tempered water rippling at the eddy’s edge might prove as terrifying. Both realities are true. Equally, no malady is petty or shameful—none to be belittled by another—and no accomplishment is unworthy of praise. As humans, we all suffer hardships and we all celebrate triumphs, both large and small alike, and through this constant ebb and flow between despair and rapture—and because of the compassion and empathy of others—we adapt, we find balance, we persevere.

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

Originally published 12.05.2010.

4.07.2012

sunken heart

Yesterday, I was on my way to pick up my girlfriend Akiko at the bus station. She’d just flown in from New York City to help me out with Calvin during a long weekend while Michael is away. I got stopped in traffic behind a school bus. Through the glare of the back window I could see a couple of little boys making mischief, bouncing around from seat to seat. One of them, the smaller and cuter of the two boys, looked down at me through my windsheild, smiled and waved. I smiled back warmly while returning his gesture. And then, thinking of Calvin and all that he is and all that he isn't and all that he will never be ... my heart sunk.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy and an end to the heinous side effects of the drugs used to treat it. It's not hard. Just do it one story at a time.

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

4.06.2012

friday faves - seeing the world

While I was walking Rudy the dog the other day I bumped into a fellow dog walker. To say that Dick walks his dog, however, isn’t totally accurate. Dick drives to the college athletic fields, parks, shuffles to a nearby corner of grass, slowly lowers himself onto the ground at the base of a tall pine tree and sits—almost lays. Nicky, his pint-sized mocha toy poodle, stays at the end of his retractable leash, which is attached to a clip on a tan canvas dog vest.

Due to a neurological disorder Dick is severely crippled, contorted. He is so stooped that his face hovers just a few feet above the ground, as if he is bending down to pick something up or tie his shoe, frozen in a perpetual crumpled upside down "L". When I see Dick with his dog I often stop to say hello. I crouch down as far as I can get so we can talk face to face. As best he can he cranes his neck to the side so he can look me in the eyes. His are watery and blue, mine green. At ninety-two his hearing is impaired so I speak loudly and clearly. Dick is a veteran of war and has proudly shown me the memoir he self-published, bound and stacked in boxes sitting lonely in the back of his truck. “They’re going to make a movie out of it,” he once told me. I hope they do.

After our brief visits I find myself imagining how Dick sees the world. I’m curious if he regards beautiful decaying leaves floating in puddles intermingling with the muddy silhouette of his own reflection. Might he admire ants struggling over their rocky terrain carrying the day's haul? Does he recognize people by the shoes on their feet and the sound of their voice? Does he miss stretching his arms toward the sky regarding the clouds and glittering flocks of birds? It is impossible to know unless, of course, I ask.

Then I realize that I wonder the same kinds of things about my own son. How does Calvin see and interpret the world? I have no idea. I am at a total loss. I cannot ask and Calvin cannot tell me so I am left guessing.

But wondering, meditating, reflecting on these things is okay. I’ll remain close by my son’s side, nearly joined at the hip by necessity, and study his every move, reaction, interaction, smile and motivation. I will try as I may, somehow, to see the world through Calvin’s eyes—even through Dick's eyes—instead of merely through my own. No doubt I can learn something new.

Originally published 3.28.2011.


4.05.2012

elizabeth ... forever sweet sixteen

Written by Lisa Saunders, Elizabeth's mom

I awoke feeling so proud on Elizabeth's 16th birthday. Despite being born severely disabled from CMV, a virus I caught when I was pregnant with her, she had made it to her Sweet 16—surviving many life-threatening battles along the way.

Although Elizabeth's cerebral palsy was so severe that she could not walk, talk or even feed herself, she was such a happy young lady—one with a ready smile and a love of adventure, going anywhere her wheelchair could take her.

She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. At 16, weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes, and soul-capturing smile.

At the age of eight, when it appeared she had finally outgrown her tendency toward ear infections and pneumonia, she began to face a new tormentor—epilepsy. As she aged, the seizures came closer together. They never lasted more than a few minutes—yet once they began, Elizabeth would have one after another. With each one she'd turn a little bluer. We tried many drugs and a special high-fat diet, but all of the treatments interfered with the only skills Elizabeth had—breathing, eating, and smiling. When we tried drugs with fewer side effects, their effectiveness was only temporary. My husband Jim and I were growing more afraid for her.

Less than two months after Elizabeth's sixteenth birthday, I dropped her off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today."

Elizabeth smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!"

Later that day, I got the call I had always feared.

"Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."

My husband Jim and I met her ambulance at the hospital. They did everything they could, but Elizabeth was gone. Jim and I took turns holding and rocking her for hours. My husband looked down into her open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth did.

It has been four years since we lost our little girl. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her—never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she suffer hours of discomfort before and after a seizure. She is finally free—and forever "Sweet Sixteen."      

Elizabeth

4.04.2012

who would you be?

My sister was in town helping me take care of Calvin during Michael's stay at an artists’ residency. She washed the dishes, vacuumed the entire house—twice—fed Rudy and Neko and Calvin and—a self-proclaimed non-cook—she even made me dinner. She was the extra pair of hawkish eyes and deft hands that are near essential in caring for Calvin without having to sequester him to the johnny-jump-up or the high chair just to get anything done. We hadn’t spent this much alone-time together since just after I graduated from college when I lived with her in her tiny one-bedroom apartment the final year of working on her doctorate.

The other night, after a very rough and worrisome time feeding Calvin dinner as he screamed and raved like a lunatic (seizure brewing? yes) and passionately yanked my hair, scratched my ears, head-butted me and kicked my legs, we finally put a drowsy, drugged-up kid to bed. It felt nice retreating to a warm rolling fire to talk, a couple of glasses of wine in our hands—mine red, hers white with five floating ice cubes.

“If you could be anyone you wanted, who would you be?” she asked. I paused for a long moment pondering the question, my denim-clad legs backed up to the fire. I discounted the notion of actor because of their lack of privacy, discarded the idea of accomplished musician because of their demanding tour dates, rejected the choice of professional athlete because of their intense game schedules and brevity of career. She reminded me to choose a specific person rather than a mere profession. “So, who would you be?” I asked. Her answer was quick and obviously well thought out, “Jacques Cousteau.”

She went on to explain her choice, embellishing on the adventurous nature of Jacques Cousteau’s life work undersea, his exotic travel and the good that his research has done for the world. I considered my choice further and figured I'd enjoy being some sort of accomplished artist such as Damien Hirst. Perhaps I’d be a famous photographer like Fran Lebowitz (as long as I didn’t have to think too hard about how to take a good picture) or maybe an author like Stephen King or Emily Dickinson (though she had epilepsy) or some other accomplished writer. But I’d also want to be a philanthropist, someone who’d promote the welfare of others like Eunice Kennedy Shriver. In the end, I never landed on a specific person who I’d chose to be if I could, and our conversation flowed to the next topic.

After a couple of hours bantering the embers dissolved to an orange-white glow. I bid goodnight to my sister and headed upstairs. Rudy the dog joined me just as I plucked a meowing Neko out of Calvin’s bed. I brought her into my room where she snuggled with Rudy on the floor.

Pulling the covers over me while gazing out the window at the swaying pines I realized who it was I’d like to be if I could. Me, I thought, I am a writer and a philanthropist of sorts. And like my sister and I had discussed earlier, in some strange way because of life with my crazy, disabled, seizure-racked, drugged-up, affectionate kid, my life is rich and beautiful in ways I never could have imagined (though to be sure, I'd choose for Calvin to be healthy.)

I closed my eyes with a sigh, my body melting into peaceful sleep with Rudy, Neko and Calvin nearby, Caron in the next room and Michael not too far away.

My sister Caron with Calvin

4.03.2012

our greatest suffering

Our greatest suffering comes from not knowing who we are or where we belong, our greatest unhappiness comes from always wanting something more, something else.

4.02.2012

hard to bear

My sister Caron has been my second pair of eyes and hands with Calvin this week while Michael is away. Last night she wrote to her husband:

thanks for the call tonight....

all was well until about 5:45 and then Calvin had a grand mal seizure. I was with him walking around the house and he just went limp and slumped to the floor which he does often when he is tired so I did not think much about it other than that I was going to lift him up and put him in his high chair for dinner. But christy saw that he was having a seizure....it was pretty awful. I knew it would be, but seeing it in person and knowing that Calvin was in pain afterwards was so so hard to bear.

Both of us cried later after we put him to bed (without his dinner). Anyway, it is a sad night and we are just sitting and talking. I don't know how she does it.  Calvin is just this innocent little kid going through pain and he has no idea why, no idea what is happening. it is so very sad.
 

Reading what she’d written to her husband was hard. I’m so deeply embedded in life with my disabled, retarded, non-verbal, developmentally delayed, seizure-racked, drugged-up child that often I don’t see clearly how difficult it all is. It is not until I step back from the situation—often from reading or hearing what someone else has to say about it—that I can gain complete perspective of how miserably hard and sorrowful it truly is, especially for Calvin.

And so the story goes, Calvin takes more and more medication but continues to have these hideously elusive seizures no matter what we do. The longer he has seizures—and the more medicines that fail—the more likely it is that he’ll suffer from them for the rest of his life along with the drugs’ debilitating side effects. It’s the life of a child difficult to imagine but even harder to bear. Our only hope out of this living hell that is epilepsy is a cure.

Please share Calvin’s story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinsstory.com

photo by Michael Kolster

4.01.2012

SUDEP

Ever heard of SUDEP? It stands for Sudden Unexplained Death in Epilepsy. It is similar to SIDS in that it is unclear as to the actual cause of death.

For a person like Calvin who has poorly controlled seizures, especially grand mal seizures, the risk of SUDEP is one in 100 over one year. Other risk factors for Calvin include his nocturnal seizures, his use of more than one anticonvulsant medication, his developmental delays and his onset of epilepsy at a young age.

SUDEP is not well understood, although current research indicates it may be related to heart rhythm problems and/or respiratory problems during a seizure. So although we listen to a baby monitor at night in an effort to hear Calvin's grand mal seizures it is possible we may not detect a problem related to SUDEP. Regrettably, the fact that Calvin's seizure medicine can cause respiratory suppression is an additional risk.

Knowing this about my son's condition has made me acutely aware of his mortality. I still feel like a new mother who repeatedly checks in on her infant to see if he is breathing, which I do every night, several times. And though I dread Calvin being suddenly whisked away from me, in turn I very consciously relish each minute that we have together. I lavish him with caresses, tickles, hugs and kisses. Mornings we linger in bed and he puts his little arms around my neck, pulls me close and squeals with delight. These tender moments are pure sublime and allow me, if just for a time, to forget the rest.

And just so you know, this ain't no April Fool's Day joke, but I sure wish it was.

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photo by Michael Kolster