it’s all fun and games

I swear to god that kid is going to poke his eyes right out of his sockets—really, detach a retina, like the doc said—and shoot one right across the room and poke someone else’s eye out! Calvin just won’t leave those eyeballs alone. If he isn’t eating or walking or crawling around he is poking his eyes. And even then sometimes those fingers find there way in there.

Calvin is going to be lucky if his two front teeth stay in his head past his seventh or eighth birthday. He pulls his foot up to his mouth and, before we can intervene, he bites his shoe and then yanks his foot out from between his clenched teeth. But, if those chompers don’t survive his wrath, we’ll still manage somehow. Besides, I've always been a sucker for a snaggletooth (think Sam Shephard.)

I’m surprised Calvin hasn’t mangled more eyeglasses than he has because he yanks them sideways off of his head. And to add insult to injury, if he can get them off before I pounce on him, he bites, chews and rips them out of his teeth. Thank goodness for Superglue and electrician's tape. It's Revenge of the Nerds 2010. Good thing I love nerds.

It’s a miracle Calvin hasn’t had to go to the podiatrist the way he bangs his heels on the tile floor in the bathroom and cracks them against the hard wooden footrest of his high chair and smacks them on the bottom of the cast iron bathtub when the water has drained out. Thankfully we don’t have downstairs neighbors.

If I didn’t brush Calvin’s hair once in a while he’d have dreads by now, at least in the front. At night in his crib he pulls his knees up under his body and rubs his forehead back and forth, back and forth until his bangs are a frizzy mass. It wouldn't surprise me to wake up one morning to find our own little Rastaman.

And if it were possible to rub off your fingerprints he would have done that by now, too. Some call it pill-rolling—the way he rubs his fingertips together incessantly. At times the habit is practically ceaseless and it's a wonder he doesn't spark a flame. But I guess there are worse habits to worry about.

So for now, it’s all fun and games—until Calvin pokes an eye out.

raising raymond

My Uncle Raymond, who is now in his early seventies, was born deaf and his development was retarded. My mother, who is ten years older than her brother, went off to college at sixteen leaving him behind with his older sister, Carole, my aunt, who at the time was only eight.

I remember, when I was a child, visits from my aunt, uncles and cousins. Raymie, as we called him, would putter around the house with his unmistakable shuffle, grunting and vibrating his pursed lips, “bbbrrrr, bbbrrr, bbbrrr” like an infant making a raspberry. It must have felt good because—to him—it was silent. I recall trying to teach him a simple card game. I wrote basic instructions on a piece of paper since I could only sign a few words and Raymie's signing was limited. He just got confused. But Raymie liked crafts and tinkering. He'd fix flat tires on bicycles and each year he'd send us a beautifully hand-sequinsed cloth calendar adorned with brilliant exotic birds.

About twenty-five years ago Raymie was diagnosed with Autism. He had lived from childhood into adulthood with his mother. She divorced my Grandfather when Raymie must have been about ten and she was left a widow by her second husband. It was after that that my Grandma and Raymie moved into a trailer on my Aunt Carole and Uncle Jack’s farm in Oregon. The two lived in the trailer, packed with antique furniture and nicknacks, until she died. Raymie was left to be cared for by my aunt and uncle, whose four children I believe had since grown and left home.

Since then, and for nearly twenty-five years, Raymie has remained in my aunt and uncle’s care. They have been responsible for his meals, his health, his hygiene, his clothing, his shelter, his transportation, and his services. They've kept him active in programs for the mentally retarded. They have taken Raymond with them on their vacations, to dinners, to functions, on outings—everywhere. When he was younger he was prone to running away—of fits of rage and vandalism, particularly after his father's and mother's deaths—so leaving him by himself has never been an option, and in any case he is not capable of being independent.

Over the years I have tried to grasp the immense responsibility that taking care of my Uncle Raymond must entail. I am only beginning to understand the tremendous, ongoing task of helping him bathe, of keeping him in good health and of trying to diagnose the source of pain, discomfort or anguish in a man who has great trouble expressing himself and would just as soon try to hide it. And in my gradual comprehension of their reality I have gained perspective, and thus great admiration for my aunt and uncle, and my cousins who have also helped in his care. I appreciate them for keeping and loving Raymie for so many years, this man who is still very much a child. I can never intimately know their hardship or their joy although, because of life with my son Calvin, I am beginning to learn.

my Uncle Raymond as a boy

baby steps

I came across this video today while looking back on email correspondences. In it Calvin, who is two and a half, is walking to me from his nurse's husband while his nurse shoots the video. Seeing it again I am surprised at how small he is, but his skinny legs protruding from a gaping diaper make me smile.

Calvin loved to practice walking and would stumble back and forth between me and Michael time after time after time with the cutest little grin on his face. Sometimes he'd be so happy he'd breath excitedly, as if hyperventilating, then start to giggle.

Nearly every day these past four and a half years he has practiced his walking. Calvin has made some progress, though we must still keep a tight hold on his safety harness. We take care coming around corners to ensure he doesn't clip an ear or bonk his nose. As he approaches objects we take up the slack in the harness reins in the likely case he will misjudge the distance and crash. And though Calvin no longer sways quite like the drunken sailor in the video, his balance and coordination are still very much compromised. The problem with his balance could be his brain's lack of white matter, or it could be his vision, the uncontrolled seizures, the antiepileptic drug side effects or some wretched combination of all of the aforementioned.

But Calvin is a Superkid, a M-F Badass, as one friend most endearingly deemed him, and no matter the obstacle he tries to conquer it with great determination, even if just by taking baby steps. I can learn a lesson or two from him.

beautiful universe

Every night, when I was a kid, as the eight of us sat around the dinner table, my father said grace. I had no idea what he was saying—the words tumbling over each other as they came out of his mouth—but I was able to memorize the verse simply by mimicking his syllables. 

Other than reciting grace, my dad never said one word about God. Beyond the daily grind of his job, my dad’s focus was on his children and on getting out in the fresh air as much as possible. He praised nature and was a sun worshiper of sorts, occasionally bathing in it, but mostly just soaking up its warm rays as he worked hours outside in the yard.

I helped my dad tend a garden that boasted plentiful, succulent vegetables and fruits: berries, squash, greens, root vegetables, rhubarb, Swiss chard—you name it. He loved being outside and working with the earth, planting seeds, pruning the ample fruit trees, harvesting their yield and fostering rhododendron and camellia buds. He liked bees and taught me not to be afraid of them. He'd spy garter snakes peeking out from crevices in the rock wall and, knowing I liked them, he'd catch them and place them, gracefully writhing, in my small hands. He shared his love of birds with me—which was palpable—though not so much in words but by his pleasure in seeing the abundant robins, quail, hummingbirds and the occasional pheasant. And gazing up at the clouds we stretched our sore backs after hours together in the garden, taking in clean deep breaths then releasing; I felt close to him and to the universe.

My dad lives on in me through my love of gardening, of nature, of our beautiful, expansive, complex universe. I wish he had stuck around long enough to meet Calvin.

I imagine them together in a dream, lying side by side on a big colorful towel in the middle of a meadow watching the clouds meander by. As butterflies dart and bounce amidst sunlit drifts of bees and pollen, my dad shows Calvin how to make a blade of grass sing between his thumbs. Grandpa and Grandson, two peas in a pod, giggle with delight.

photo by Michael Kolster

intubation

Just after Calvin turned two we were on a plane returning from a visit with Michael’s parents. Mid-air, Calvin became pale, as if in shock, then he vomited and fell asleep. We figured he was just airsick.

At home later, and just after I had fed him dinner, all color drained from Calvin's face. He slumped in his chair and, with a sour look, started gnashing his teeth and vomited again. I had seen this suspicious behavior a few times in previoius months and although it seemed perhaps he was ill, or might have eaten something that didn't agree with him, my gut told me differently.

The next day the suspicious behavior continued until it finally culminated into an unmistakable seizure. We immediately dialed 911 and the medics arrived at our house in minutes. I don't remember how long his seizure lasted, but I do remember I was very frightened and concerned. In the emergency room I spoke with his pediatrician on the phone. She decided it was best to keep him overnight for observation. Our local hospital did not have a pediatric intensive care unit (PICU) so, after Calvin stabilized, they wheeled him upstairs to the ICU.

Calvin was tiny, even for a two year old, and the ICU nurse couldn’t find a pediatric oxygen mask for his room. Her solution was to punch a hole in the bottom of a Styrofoam coffee cup, insert the oxygen tube through the hole and place it in the steel-barred crib near Calvin’s head in case he needed it. I was dumbfounded at her remedy, but what was I to do? His pediatrician arrived and began examining him when he started to seize again. With her stethoscope to his back she said soberly "he's not breathing." I panicked. She yanked the oxygen tube out of the coffee cup, held it under Calvin's nose and sternly ordered the nurse to find a pediatric mask. Everything blurred and morphed into slow motion. An eternity later a mask was located. Calvin’s doctor placed it firmly over his mouth and nose and she began to squeeze the red, pleated bag inflating his lungs.

The intensivist who had been called determined that Calvin needed to be intubated immediately—no time to wait for an anesthesiologist. A wall of white-coated figures encircled our tiny son as they placed him, wearing only his diaper, on a gurney. The intensivist began the procedure, feeding the clear plastic tube through Calvin’s mouth and pushing it into his trachea. Calvin began to scream—he was breathing. I was in shock and too ignorant to question the decision to intubate and, at the time, I had little choice but to believe that they knew what they were doing. Distressed and trembling—my child's muffled cries gruesomely echoing through my body—I wanted to run to him, but Calvin was fenced in. A nurse asked softly if I wanted to leave. Leave my child? And though Calvin was still breathing they continued their torturous mission. The doc tried several times to cram the tube down Calvin’s throat, but to no avail. Eventually he determined that the tube was too big. With my hot face buried in Michael’s chest, I turned to see the doc pulling out a bloodied tube as my baby arched and screamed and sputtered.

To our horror, a second, smaller, tube was then initiated. Again Calvin shrieked in agony and tried to escape their restraint. In my terrified daze, my boy's stifled shrieks eerily commingled with the strange voices and sounds in the ICU. Lights and shapes shifted and blurred in my flooded, swollen eyes. Michael stood with stoicism—his tight embrace shielding me from our horror—but his eyes, too, were red and moist.

Finally, the intensivist threaded Calvin's trachea. We rushed to his side as each white overcoat splintered off. Our baby boy was crying, hurt and confused, and I held him. I held him and I did not let go.

photo by Michael Kolster

a gentle spirit

A gentle spirit has come into my life

To make me see things I did not want to see,

To make me feel things I did not want to feel,

To teach me things I did not want to learn.

This gentle spirit has hurricane force

That picks me up, turns me this way and that,

And puts me down softly in a new place,

Always a new place.

I cannot return to the safe warmth I once knew,

It is gone forever.

Because of this fragile, gentle spirit,

Joy and sorrow have become intertwined

In a fiber of life that few can comprehend.

Because of this sweet, gentle spirit,

I can appreciate what is often assumed.

- Jan King -

christmas morning melancholy

It has happened on Christmas before. With as many seizures as Calvin has, it’s bound to. And though they are becoming more frequent again—more than once a week—and they seem to be getting longer, we have managed to avoid the hospital, at least for now.

As Calvin lay next to me, shuddering and shivering in his post-seizure state, I gaze, from inside my melancholy, out the bedroom window at the indigo predawn sky. A flickering star appears framed closely by large, almost black trunks and bushy, sagging pine branches. Outside, in the bitter cold of the morning Rudy barks wanting back in. I imagine his hot breath smoldering in the frosty air. Michael is warming milk and making coffee downstairs.

Somewhere nearby a woodpecker’s hollow knocking echoes in the stillness. A second bird replies from farther off. These are the only sounds I hear besides Calvin’s shallow breathing and the rustling of soft flannel sheets. The bird’s resonant tapping, so stark in the placid, biting dawn, doubles the sound of Calvin’s wrists striking his forehead.

Calvin turns and reaches for me. I lean into him as he wraps his arms around my neck and pulls me close, his soft hands caressing my back and the hair at my nape. I nuzzle him and kiss his plump cheeks as he holds me repeating “uh-uh, uh-uh.” He will fall asleep this way, just as the sun begins to shine warmly on the tops of the trees.

wishes

I wish I had a ton of money so I could give it away. I’d give it to researchers to find a cure for Epilepsy and Cancer and Alzheimer’s and other diseases. I’d give it to folks who work too hard and still don’t have enough to eat or time to spend with their kids. I’d give it to improve schools and teachers' salaries and to students to pay for their college tuition. I’d give it to organizations to fund free public art, music, theater and dance. I’d give it to promote human rights.

If I could do anything, I’d want to be a doctor helping little kids get better. I’d want to explore the universe. I’d want to be a musician playing to crowds for free. I’d want to write books that could change people's lives for the better. I’d want to make people laugh and come together. I’d want to take disadvantaged kids and their families to places they’ve never been—perhaps the ocean, the mountains, the Grand Canyon or Yosemite.

If I could simply wish anything into reality for Calvin I would wish things that I already wish every day. I wish Calvin's seizures would end and that he could stop having to take medicine. I wish Calvin could walk and talk and run and play with other kids. I wish he could eat anything he wanted. I wish I could teach Calvin about the world, about our beautiful universe, about love, compassion and generosity. I wish Calvin could go fishing with his dad. I wish he could know the joy of a picnic by the sea or a frolic in the snow. I wish he could make art. And I wish others would love him, which of course, has already come true.

scars

When Calvin was born, by emergency cesarean, the anesthesiologist had put me under. Just prior to his delivery I had had to undergo a pheresis to extract my platelets in case Calvin needed them, as there had been some evidence suggesting that he might. So many of my platelets were taken that I couldn’t undergo an epidural without risking a bleed into my spinal cord. Thus, sadly, neither Michael nor I saw our son Calvin emerge into the world.

My six-inch scar has healed well and now is barely discernible. However, my belly is numb below my navel to just above my pelvic bone. The nerves that were severed by the surgeon’s incision must not have healed as well as the scar itself.

This numbness serves as a constant reminder, an emotional scar of sorts, of events that happened nearly seven years ago. Sometimes I feel as if the numbness is my body’s way of trying to forget the trauma, though this lack of sensation only makes my mind remember. But I want to remember, I must remember. The events of the past—the stress, grief, fear, excitement and joy—inform my thoughts and feelings of today, of the here and now. My scars, both emotional and physical, metaphorical and literal, are a part of me; they have shaped me into who I am. I become a slightly different person—with each nick and scrape, each burn, each piercing of my heart and gaping wound healed over—than I would have been if I were unscathed. I embrace my imperfect self. It is the only self I know.

photo by Michael Kolster

the grumpies

Sometimes I’m so very tired. And when I’m tired I get pretty dang grumpy. And when I’m grumpy it’s best to steer clear. Luckily the “grumpies” mostly get me in the mornings after I’ve been awake all night because Calvin’s been awake all night. So really, one only needs to worry if one is my husband or Rudy the dog. Fortunately, everyone else will most assuredly be able to avoid me when I am not, what one might call, a pretty sight.

When I’ve got the grumpies, and though they’re short-lived, I can get mean and nasty. I wouldn’t be surprised—if I got a glimpse of myself—to see knotty hair sticking out in clumps, narrowed beady eyes with dark, puffy circles under them, trembling flared nostrils and perhaps yellow fangs protruding from foaming lips.

When I get teed off I just need about five minutes to vent my frustrations in some quiet part of the house. This way I can sputter and spew a continuous string of my most creative and raunchy expressions that to one, in another part of the house, might sound like repeatedly screaming “supercalifragilisticexpialidocious!” Though my manner of expletives are not meant for the faint of heart and would most certainly cause Mary Poppins—in mid ditty—to run for cover.

Indeed, I enjoy employing all of George Carlin’s “seven words you can never say on television,” plus about thirty-five more that are nasty variations on the themes “dirt-bag”, “dog-breath” and “poopy-face” oft peppered by my most favored and cherished F-bomb.

I highly recommend, when one gets the grumpies, considering this mode of release. It ranks much higher in my book than suffering tendinitis of the elbow from thumping a pillow too hard. It’s also a lot more rewarding, and often ends in a chuckle or two because, honestly, it’s better if I don’t take myself too seriously when the grumpies get the best of me.

christmas past and present

With Christmas just around the corner I am reminded of the hustle and bustle of the holiday; the long lines, the traffic and the crowds. Years ago I pretty much liberated myself from the stress and expense of Christmas shopping and card giving. Anyway, I’ve always preferred making gifts: cards and quilts, photo books, foods, original poems and stories. And friends and relatives will tell you that I've perfected the fine art of re-gifting.

Maybe I've fallen into these habits from being raised in a frugal family, one in which my father washed plastic wrap and draped it across the dish-drainer to dry and re-use. As the last of six kids, most of my clothes and toys were well-loved hand-me-downs. My favorite toys were my brothers' Hot Wheels, my sister’s ratty-haired troll dolls and a box of worn wooden blocks painted yellow, red, blue and green. I spent hours rummaging through a slouchy cardboard box full of my grandmother’s old clothes playing dress-up and I’d make forts out of woolen blankets draped across sagging couch cushions set on end.

The religious side of Christmas, although I was raised Catholic, was never emphasized by my parents past the ritual of attending mass with my Grandma or in the placing of the nativity scene that my mother unboxed, along with delicate glass balls, felt reindeer, creepy elves and half-melted Santa candles. She and I enjoyed decorating the tree with rain or icicles and the kind of light bulbs that should have set the tree aflame. I remember my parents receiving countless glittered greeting cards and I watched my mother's hand cramp up as she wrote, addressed and licked stamps for seemingly hundreds of her own to post. And every year for Christmas I asked for stuffed animals and salami. I loved salami.

At home now we still receive a handful of holiday greeting cards, and while many are void of any hand written message or signature, we're so glad to be thought of, though our favorites are the ones with personal sentiments (or dirty Santa jokes.)

Our son Calvin, by nature, is oblivious to Christmas, Santa Claus and presents. He wants for nothing more than to hang out at home with his mama and daddy, playing happily in his johnny-jump-up, listening to his favorite music, and being lavished with gifts of tickles and kisses. The day passes like any other. And though we require none, Calvin's gift to us is his boundless love by way of his contagious giggles and warm hugs.

I guess Calvin landed in the right family because we tend to focus little on presents. We celebrate much like I did when I was a kid, with emphasis on the secular and the mere fact that the days are getting longer, with a few home made gifts and simple trinkets thrown in to the mix. We center our holidays at home just being together, then after we put Calvin to bed we enjoy quaffing the Kolster family's bourbon-eggnog, preparing a special meal, opening a nice bottle of red wine—or two—and relaxing in front of the fire. And if I'm lucky, at some point, I get to gnaw on a stick of salami.

lightning strikes

Calvin slept well through the night then awoke at 5:15 a.m. banging on the crib side, as he does every morning, wanting to get out. Sometimes, and if it is very early, I lay him back down under the covers encouraging him to fall back to sleep. Today I brought him into our bed. Michael had spent the night in Boston. As Calvin lay next to me he was restless and squirming. I detected a few suspicious jitters and jolts but I was reassured—at least partly and for a time—by his hugs.

But at six o’clock, while in my embrace, a lightening bolt struck him solid, the seizure’s alchemy transforming his supple body into a steel rod. I watched the seconds tick into minutes. None of my kisses, caresses or words halted the convulsions that ripped through his body and brain. After a minute and a half he started to breath—horrible, constricted gasps—but breaths nonetheless. Then came his contorted, terrified expression as his quivering limbs, cramped and mangled, rose into the air.

In the dim light of the dawn, the seizure having stopped, and after half an hour of tossing, turning and rubbing his forehead in his hands, an odd lopsided grimace appeared on his face. I had seen this type of seizure before. And though it was still thirty minutes until dosing time I opened his mouth and dropped the tiny, round white pill onto the back of his tongue, chased it with a little water and grieved for my boy's suffering.

Many like to say that there is some divine plan in the making of Calvin, and so it follows, of suffering seizures that beat the living daylights out of him and waste his brain, and thus, of the need to stuff him full of toxic chemicals that debilitate him further. They say there is a purpose to his torment, or in other words that he needs to suffer—that he must suffer—to fulfill some higher design. And while I know these believers have the best of intentions in justifying the scourge of Calvin's epileptic storms, I don’t buy it. I never have. I never will.

wallpaper.worldsimple.com

small talk

I’m not one for small talk, but sometimes the situation requires it. I guess I do as well as anyone, trying to avoid conversation about the weather, asking how the kids are doing, and what the holiday plans are.

During the seven and a half months that I was pregnant I met a nice woman at the pool. At first, in the locker room, we engaged in small talk, but over the months, our short conversations rounded out, like my belly, as we shared bits and pieces of our lives. Then, somewhat unexpectedly, Calvin came early and I never returned to the pool.

My new friend had sent Calvin a beautiful gift, which was waiting for us when we brought him home from the hospital seven weeks after his birth, but I never saw her.

Months later, while in the depth of my grief and despair, and on a dreaded trip to the grocery store, I saw her. Her familiar face was beaming, as usual, with that sunshine smile of hers, and tears welled up in my eyes. My desire—almost need—to hug her surprised me, but then she had always been so warm and kind. Immediately, though, I felt her release. She hastily explained that she couldn’t talk—she was in a rush—and so I said goodbye, ashamedly wiping the tears from my face.

Occasionally, I continue to see her at the grocer. At times she looks right through me and goes about her business, as if feigning not to notice. Other times when I’ve seen her she has abruptly turned and gone the other way. And coming around the corner of an aisle, unavoidably bumping into me, she flashes a cheery smile with an animated “hiiiii, Christy”, but then quickens her gait and cruises on by.

I’m curious if she thinks, because of Calvin's various afflictions, that I have some sort of contagion, like leprosy. Or maybe she sees me as a kind of vortex that, perhaps, will suck her into a black hole of misery if she gets too close, although this is hard to believe since I no longer meet her teary-eyed, but rather quite happily.

Her masquerade seems clear, appearing thrilled to see me while seemingly hiding her desire to want nothing to do with me. I find this so very odd because—although we never developed a deep friendship while only visiting at the pool—she had told a close, mutual friend how much concern and care she had for me and my circumstances with Calvin, though I've yet to see any evidence. I’ve never felt anything from her but superficiality since I first saw her at the grocer, and it makes me feel so sorry. It also makes me wonder if I might be guilty of doing the very same thing to others, of expressing disingenuous enthusiasm or concern when all I really feel is indifference. I hope not, but I think it is probable that I focus on my own worries and fall into narcissism, at least some of the time. I will say that I aspire to be honest and forthright in my relationships because that is what I desire of others, though at times I know I fail.

So, I try not to hold it against her. All of us have busy lives and our own struggles to deal with. None of us can know what another person has just experienced or what they face day in and day out, and like I said, I know I've committed the same injustices. So, when we meet in the grocer’s aisles, I hold my composure, smile politely, say "hi, how are you?" and, taking her cue, I simply move on.

just enough to be dangerous

My husband and I have always wanted to live a simple life. We wanted just one child to care for, to nurture, to teach and to love. But soon after Calvin was born, it was clear that life would not be that simple. We began learning how profoundly disabled he would be and as our dreams of parenthood started to shatter, I found myself questioning our initial plan.

Although Calvin has always mesmerized me with his beauty and charm it has been difficult to—and nearly impossible not to—compare him with other children. It amazes and shocks me to see tiny infants in grocery carts and strollers gazing at me from afar, and I find myself fascinating at their fine dexterity. Imagining other kids walking, of their own volition, side by side with their parents and asking things like why the sky is blue, weighs heavily on my heart. Often, when walking the dog I used avoid the playground near our home because seeing the children running and laughing and playing sent me into despair.

I still ask myself, "why can’t Michael and I have a chance at all of these dreams?" Sometimes I ache for it to be so. But then, I remember the reality of our situation.

Calvin, almost seven, has remained a toddler since he first started trying to walk over four years ago and, therefore, his capabilities are just enough to be dangerous. Because of his poor balance, coordination and vision he requires our constant vigil. And since he is so tall a toddler, and does not have refined protective reflexes, when he falls, he falls hard, like a tree that's been cut off at the ground. If he could walk by himself, without tripping or running into things, everything would be much easier.  Conversely, if he were confined to a wheelchair, which—though I'd love him just as much—I am thankful he is not, I wonder if I might say the same. But he’s neither here nor there, which complicates things; when I am with Calvin the chores go undone, I cannot cook, read or write. It's hands-on one hundred percent of the time unless he's in his high chair or johnny-jump-up. Fortunately we have the help of a nurse several hours a week.

I believe it's because of our time and devotion to Calvin that he has made significant strides considering his substantial impediments. I'm not sure if he would have come as far as he has unless I spent years doing things like getting down on all fours helping him learn how to crawl. He has our full attention, which has helped open up a world of possibility to him that he otherwise may not have had access to. I certainly can’t feel sorry for myself that I have had that to give. If Calvin weren't an only child he might still be lying on his back, helpless. Instead, he's become just enough to be dangerous, which is alright with me.

success

Since I was a youth I have loved this poem. I cannot remember where I came across it first, but it struck me. Now, having had Calvin—and been so profoundly changed by his presence in my life—I find this poem even more apropos.

To laugh often and love much;

To win the respect of intelligent persons

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty;

To find the best in others;

To give of one’s self;

To leave the world a bit better,

whether by a healthy child,

a garden patch or a redeemed social condition;

To have played and laughed with enthusiasm

and sung with exultation;

To know even one life has breathed easier

because you have lived.

This is to have succeeded.

This is an altered version of an original poem by Bessie Anderson Stanley, often falsely attributed to Ralph Waldo Emerson.

disparate regard

I once heard a story about a well-known advocate in the epilepsy community. She had devoted years to raising awareness and funds for epilepsy research. Her precious, healthy infant had started having seizures that—even after years of trying scores of medicines, special diets and brain surgery—had not been successfully controlled.

Then this woman was diagnosed with breast cancer. I was told that calls, letters and well wishes started pouring in to her. She was incredulous at the amount of notice she was getting for her own health concern compared with the lack of attention she had gotten for her afflicted child, though she had openly campaigned for the cause.

I think that this disparate regard between epilepsy and other widespread illnesses, such as breast cancer, comes down to societal ignorance, stigma and apathy. Unfortunately this ignorance translates into abysmally inadequate funding to develop treatments and find a cure.

Indeed, I was unaware of epilepsy’s pervasiveness and menace until my son Calvin was diagnosed with it when he was two. I soon learned that seizures are difficult to control in at least a third of people who suffer from them. I have seen Calvin experience the dreadful side effects from drug treatment and I now know the scary truth that epilepsy can be fatal—that it could take my son’s life. Three million Americans live this same horrible truth but you’d never know it. I aim to change all that.

Please share Calvin’s story.

To learn more please go to my Epilepsy Facts page and view these archived blog posts:

you're not immune
the truth about epilepsy
the stigma of seizures
SUDEP
scores of seizures

no end in sight

From last night:

I kept Calvin home from school again today because of a bad cold he’s had for over a month. Even so, he had a pretty good day. Turns out, though, it was too good to be true.

When Michael got home Calvin was in the bath. I told him that he had had such a good day—happy, good balance, great energy, super agile crawling up the stairs—so good that, “if it hadn’t been only two days since the last seizure, I’d be expecting one.”

Just as the words were leaving my lips Calvin started getting suspiciously hyper in the bath, so I let the water drain, helped him step out of the tub and wrapped him snugly in his towel. We made it to the room where his pajamas were laid out and I lifted him onto the bed. Seeing his face in the dim light, flushed and expressionless, eyes jerking up to the left, I knew the storm was coming. I turned him onto his side and within seconds he started to convulse; he didn't stop until three grim minutes later.

It is possible that, although Calvin has been sick, which lowers his seizure threshold, he may be habituating to his seizure drug. Since August his fits have gone from every two weeks to every six to ten days, and this last span was only two days.

Because of this development, yesterday in Boston, we discussed treatment options with Calvin’s neurologist, along with her nurse and dietitian. In an effort to prevent more seizures we are faced with either increasing his current medication again or introducing a second antiepileptic drug. With either option come more side effects. The thought makes me ill.

He’s been restless tonight. Right now he is banging on his crib for me to come and give him more water even though he drank three bottles, like a parched camel, just five minutes ago. I fear he is in store for another seizure before the night is over. There’s seems to be no end in sight to this misery.

shifting gears, changing course

Recently, when I was on an Alaskan cruise with my sister and my 81 year old mother, who suffers from Alzheimer’s, I met another octogenarian and her husband. I had joined her during the busy breakfast rush, since there were no open tables left, and we talked and talked until her husband arrived and then the three of us talked some more.

We made such a nice connection, joking, laughing, sharing witticisms and hugging, and we have kept in touch. The other day she wrote telling me more about herself. She sent me one of her poems and talked about her writing group. She told me that in the spring she and her husband were going to be great-grandparents for a second time, and she went on to say:

“as I write, I realize this may be a hard kind of news for you to read, and I almost deleted it. But then I decided I should leave it there because it is part of life, and you are forced to be a realist.”

It is true, having a severely disabled child changes the course of one’s life in ways unimaginable until it happens. I find myself drifting off and dreaming of what the future might bring, and what it won’t. Of course there’s what seems obvious; Calvin probably won’t be going to college, may never have a job and most likely won't be able to live independently. It’s not even clear if he will ever be able to speak any words or communicate in some other fashion. And though I continue to have high expectations that he will walk by himself, I was certain he would have learned by now. I realize that a serious relationship is improbable for him, in any event not one that might produce offspring. What I worry about more, however, is Calvin simply getting the essential human touch—particularly in my absence—that all of us need as children and as adults. And yes, I have accepted the truth—but not without great sorrow—that I will likely never know the joy of being a grandparent.

But, as my dear friend said—and I am glad she didn’t delete it—it is a part of life, and I must deal with the cards that I have been dealt. So I change course—shift gears—to a slower, meandering, hilly path where the steep grades are difficult, though at times I can coast. This path of mine is obscure at times and holds surprise, both delightful and frightening, around every curve. But it is my path, and I’ll follow it—hand and hand with Calvin—with curiosity and wonderment until we meet the end.

just like hummus

Before I had Calvin I really had no idea how much my world would revolve around poop.

As a tiny baby, when he’d leave a little gift in his diaper, I’d be so proud of him and rejoice in his accomplishment with enthusiastic "oohs" and "ahs." When he started eating solid food, though, things got a little hard for him, literally. Even though I was feeding him ample oatmeal and prunes and pushing the apple juice we still had to give him a suppository nearly every other day for over a year. His low muscle tone made it difficult to have a bowel movement unless he was good and lubed up.

At the gastroenterologist we were given a prescription for Miralax. Our goal was to get his stool to be the consistency of apple sauce. Yum. Thankfully, the medicine worked like a charm and I was back to congratulating him with a sweet “good boy, Calvin” every time he stooled.

Among other daily rituals, I log his bowel activity. No poops can mean that there might be an impending seizure or it could mean I need to give him less cheese or more yogurt. In my journal’s margins I include words like “smudge” or “smudge-plus” and whether his offering was a tiny, small, medium or large BM. Sometimes it’s a complete “blowout.”

Calvin’s bus driver seems quite amused, and perhaps nauseated, when I give his Ed-tech the morning’s details. “He had a huge poop this morning,” I say, “it was perfect– just like hummus.” When they bring him home the Ed-tech remarks, “he had another one, it was dark green and very seedy.” The bus driver is incredulous at the conversations we have nearly every day. But I can tell our enthusiasm for the subject is rubbing off on her since she congratulates us, sometimes with a high-five, every time she hears he has delivered us a package, although I’m not sure if she still eats applesauce or hummus.

rude awakening

In the pitch black of the morning I ran, half asleep, to Calvin. I’m not sure what I heard but I knew he was having a seizure. It was six o’clock.

Michael and I caressed him, told him we were right there and to breathe. His hands were dark and blue. This seizure, longer than usual, lasted at least three minutes from the moment I reached his crib-side—no way of knowing when, exactly, it started. I wondered if this one was going to stop, but it did. 

As Calvin lies in bed next to me now, thick mucous from a month’s old virus makes it nearly impossible for him to breathe through his nose. He sucks his thumb for a few seconds at a time before coming up for air. Having trouble falling back to sleep, he remains awake and slightly irritable, banging the back of his wrists against his forehead.

I change his diaper and give him his seizure medicine, slightly early, plus two acetaminophen suppositories in case he has a headache from either the seizure, the sinus congestion or both. Gurgling next to the bed is the humidifier, misting out hot beads of moisture in a futile attempt to ease Calvin’s breathing.

The convulsions twist and tangle his innards. Calvin’s gut creaks and moans while he writhes to release the kinks. But he seems hungry so I spoon feed him the mixture of yogurt, oil and mashed strawberries that Michael has prepared. He takes it willingly with labored breathing between each bite. I think he’s going to be okay.

drug downside

Imagine if your infant or toddler had to deal with the following drug side effects, in this case from Clobazam, the benzodiazepine that Calvin has to take:

Drowsiness, dizziness, tiredness, fatigue, loss of coordination, constipation, loss of appetite, muscle weakness, dry mouth, tremor, weight gain, restlessness, rapid/pounding/irregular heartbeat, changes in vision, slurred speech, confusion, depression, irritability, behavioral changes, rash, itching, swelling, severe dizziness, trouble breathing.

Physical and psychological dependence are known to occur in persons taking benzodiazepines.

Anterograde amnesia (inability to remember new information) is known to occur after administration of benzodiazepines.

Contra-Indications include hypersensitivity to clobazam, severe muscle weakness (myasthenia gravis) and narrow-angle glaucoma.

Withdrawal symptoms have been observed after abrupt discontinuation of benzodiazepines. These include seizures, irritability, nervousness, insomnia, agitation, tremors, diarrhea, abdominal cramps, vomiting and mental impairment.

Loss of part or all of the anticonvulsant effectiveness of clobazam has been described in patients who have been receiving the drug for some time.

Excitement and other paradoxical reactions can result from the use of benzodiazepines.

In patients for whom prolonged therapy with clobazam is indicated, blood counts and liver function should be monitored periodically.

These are just a few reasons why we need to find a cure.

orion

At night when I hear Calvin rustle I go to him. I want to be sure he is not having a seizure and that he is breathing well. If he’s awake he rolls onto his back and looks up into the darkness expectantly, aware of my presence. I know this means he wants a drink of water. I gently lift his head and give him the bottle that I keep at his bedside. The medicine makes him thirsty. When he’s had enough he rolls to his side and falls back into a slumber as he softly repeats “uh-uh, uh-uh."

In the darkness I fill up his bottle and I can see out the bathroom window. On clear, crisp nights, like last night, Orion appears in the sky. He looks down upon our house majestically, with his taught belt and steely sword, his celestial body strong and resplendent. Orion is the hunter. I imagine him watching over Calvin and slaughtering the beasts we know as seizures. Orion’s battle is not won, but every night when I see his gleaming features in our ebony sky my hope is renewed.

old habits die hard

What they say is true; old habits die hard. Over the years Calvin has developed a myriad of habits, bad ones, irritating ones and a few innocuous ones.

Currently, his worst compulsion is eye poking. We think it is a self-stimulating mannerism. He pokes both eyes— though thankfully not his corneas—whenever he is idle, such as sitting in the high chair while we prepare his meals, in the car seat or the stroller. He pokes his left eye with his middle finger while sucking his thumb and he pokes his right eye with his index finger. If he can manage it, and try as he may, he will poke both at once. We fear he will damage his eyes or detach a retina, so we have harmless methods to prevent this habit as much as possible in his waking hours. But at night when there is no defense, we know where his fingers will go—nestled right up against his eyeballs. Soon we'll be putting him into goggles.

Calvin’s habits take months, sometimes years, to break. He used to bang his hands and head on every window, which was unnerving because our house has some very old panes, but we successfully curbed this behavior after a couple of years of trying. He still bites pretty much anything he can get his hands on so we are still working on that one. There was a time—during which we think he was experiencing gastrointestinal stress—when he pulled his hair out at night, in clumps, and when he pulled my hair out in clumps, too.

Basically, curbing any of Calvin's habits has very simply required us telling him—over and over and over—a bazillion times, like a broken record, not to do it: "don't poke your eye, Calvin," "put your hand down, Calvin," "sit down in the bath, Calvin," "don't bite that, Calvin." It's a very good thing that I have learned to embrace tedium, because sometimes it actually works.

complicated child

I’ve got a complicated child. In the first few years of Calvin’s life he was diagnosed with ventriculomegaly, global hypotonia, cerebral palsy, hypothyroidism, ocular and cerebral visual impairments, nystagmus, slow gastric emptying and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS.) He’s been respirated, tube-fed, x-rayed, sonogrammed, CT-scanned, MR-imaged and Nuclear Medicine-imaged. He’s had a late circumcision and one eye surgery with a history of urinary tract infections, pneumonia and ear infections, plus he’s been tested genetically and for kidney stones, acidosis and urinary reflux. Calvin wears glasses on his face, orthotics on his feet and diapers on his bum.

All of these experiences have been difficult to deal with. I saw my beautiful infant, so feeble, continue to lag behind as the enormous developmental gap became more and more vast with each year. At times, in the early days, I felt I would barely survive the emotions and the rash of complications we faced.

Epilepsy, however, has dwarfed all of these hurdles combined. Calvin’s seizures have never been controlled and are constantly changing. Numerous medicines have failed him. Two rigorous diets didn’t stop the seizures. Instead, they clustered and burned out of control. Ambulances have carried him away and doctors have intubated him without anesthesia as he screamed in agony. Numerous EEGs have exposed little and blood has been drawn countless, painful times. Drugs inhibit his vision, his strength, his coordination, his enthusiasm, his development and his well being. Seizures continue to rack his brain, impede his development and risk his life.

But somehow, after each new battle, Calvin, Michael and I manage to pick ourselves up and dust ourselves off. Out of necessity and desire we try to lead a simple life. The three of us focus on what we have and how fortunate we are and remain hopeful that Calvin will benefit, one day, from a cure. And if he does, he’ll still be light-years behind all the rest, but at least, for my complicated child, the seizures will be in his wake and infinite possibilities will be waiting ahead.

photo by Michael Kolster

kids and dogs

Every so often I encounter certain canine enthusiasts who tell me that having a dog is like having a little kid. All I can think is that they must not have kids. We have both, our son Calvin and Rudy the dog, so I can honestly say that having a dog is not much like having a child, especially one like Calvin.

On weekends, when Michael, Calvin and I go to the coffee shop to leisurely sip our lattes, we prefer not tie Calvin up to the tree outside right next to the slimy bowl of water. We'd rather have him snuggle inside with us. And although it would be damn convenient, I don’t leave Calvin at home all day by himself, and while shopping for groceries, I opt not to leave him in the car, even if the windows are rolled down. Sometimes I dream about how easy it would be just to scoop out some kibbles and throw Calvin a bone, but you'll never find me succumb to that. And although it might be advantageous—particularly on a tight schedule—to scrub Calvin down every few months, we give him a warm bath each night especially since his hair doesn’t clog the drain.

Rudy the dog, on the other hand, doesn’t seem to mind avoiding the bath, and is very good at telling me when he has to pee or poop. When we let Rudy outside to do his business we don’t bother bundling him up in a down coat, scarf, hat, mittens, wool socks and snow boots, because that’s a major pain in the neck. And with the amount of laundry we do in our house it’s a blessing none of it is Rudy’s because he likes to roll in crap. Rudy is a good sport, though. He doesn’t mind sleeping on the floor or eating the same food ad nauseam, but he really doesn’t like it when I brush his teeth.

We’re all lucky that we don’t have to give Rudy medicine ten times a day, like we do for Calvin, and he hardly ever gets sick. If he does—and it’s usually because he ate something unspeakable when we weren’t looking—we just wipe it up, he’s fine, and we go on with our business. One of the best things about Rudy is that we don’t have to change his stinky diapers. And the best things about Calvin are his smiles, his giggles and his hugs.

Nope, kids aren't much like dogs but they're both pretty great to have at home, to play with and to love.

birthday bash blues

Everything changed the moment we found out that there was something terribly wrong with our unborn child’s brain. At that point we decided we wanted to find out everything about him so we learned that he was a boy and we named him Calvin, the only name we ever truly loved.

Two good friends, wives of Michael’s colleagues at the college, were due to have their babies close to Calvin’s original due date. Our three boys would go to the college day care, have the same friends and grow up together as neighbors. Instead, complications developed and Calvin was born six weeks early with little to no fanfare amidst much worry and uncertainty.

Our friends’ sons were born a month and a half later in our local hospital. Calvin and I had been boarding in that very labor and delivery ward for several weeks while he perfected nursing. One boy was born just down the hall from our room and the other in the room next door. We all went home with our infant sons within days of each other.

Months passed but Calvin never entered the daycare with the two boys, nor did he become their friend, nor any child’s friend for that matter.

I remember what must have been their second birthday party. Several gleeful children from the college daycare were there with their parents. Shiny Mylar balloons floated aimlessly around the room. The table was adorned with pretty cupcakes and colorful sippy-cups filled with juice. Cute gift bags stuffed with sundries and toys were strewn onto the floor and, excitedly, the children rummaged through the goodies. In my arms, and while I stood off to the side, Calvin cried and cried. The other children were scampering around the room in cone-shaped hats and blowing out candles, some eating their cake with forks. My child couldn’t even sit by himself in a chair, couldn’t crawl, couldn’t hold a fork and didn’t seem to be aware of the things going on around him, though maybe his crying was in protest of the unfamiliar scene. In any case, there was no way of knowing, but he simply couldn’t deal, and as a result, neither could I. I wanted to dissolve into the wallpaper or hide behind the plants. Instead, I retreated upstairs so as not to cause a ruckus and in an effort to calm Calvin. Upstairs, I could hear the animated shrieks and happy commotion below. I hoped that the hubbub was loud enough so that the guests couldn’t hear my sobs.

A few moments later my friend, the hostess, found me and embraced me as I disintegrated. She didn’t let go until I did. I knew she could have no idea of the torment I was feeling but I could see the concern and worry in her face, which told me she might have known, to some extent, why. She helped us pack our things and quietly escorted us out, leaving the merrymaking behind.

My boy Calvin is oblivious to the meaning or tradition of birthdays. When he used to be able to eat sugar we'd make him a cupcake, stick candles in it and stand by for damage control. And though I always appreciate the occasional invitation, I usually take a pass on birthday parties, but perhaps someday that will change.

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.

shake’s malts

One of the best things in the world is a good chocolate malt, as long as it’s a black and white made with hard-pack vanilla ice cream—never soft serve—chocolate syrup, extra malt powder and very thick, with little to no milk.

Serendipitously, when Calvin was just over two months old, his pediatrician prescribed a diet of daily chocolate malts—for me! I acquiesced to this harsh regimen without protest.

Born six weeks prematurely, and with significant neurological problems, Calvin had a rough start spending his first two months in the hospital. While in the NICU, because of immature lung development, Calvin needed the help of a respirator to breathe. He also had dangerous tachycardia (rapid heart rate) and rapid respiration. But the thing that kept us imprisoned in the hospital for nearly eight weeks was his inability to nurse efficiently enough to thrive.

Weighing in at just four pounds fifteen ounces at birth, he gained little over the first several months and, by the time he was eight months old, he weighed just thirteen pounds. He didn’t even register on the growth chart. The daily malts that the pediatrician prescribed were meant to increase the fat in my breast milk so that Calvin would put on some extra weight. Happily, we both did, and to be honest, I've never gotten sick of Shake’s malts.

photo by Michael Kolster

too good to be true

Yesterday at 7:00 a.m. we packed up the car and embarked on the two and a half hour day trip to see Calvin’s neuro-ophthalmologist in Boston. Calvin spent the first part of the trip screaming and “singing”, which sounds more like a soprano on steroids than anything. When he sings he is so loud we can barely hear ourselves think, and it is nearly impossible to get him to stop. We had a long ride ahead of us.

At one point I noticed a stippling of tiny red dots on Calvin's chin and cheeks—a telltale sign of a virus—accompanied by a runny nose, a patchy red complexion and what I call “stink breath" which is the pungent breath he often has prior to a seizure.

We had forgotten to pack Calvin’s stroller so Michael carried him and held him for the various ophthalmologic tests, during most of which Calvin laughed hysterically—a little too hysterically for my comfort. The first doctor witnessed what I had recently begun noticing which was Calvin’s upward right gaze in tandem with a pronounced jerk-nystagmus. He asked us if Calvin was having absence seizures. I explained that, because of Calvin’s nystagmus, it was difficult to tell and that what we really needed to do was another EEG.

Save for Calvin’s laughing the visit was pretty routine and after two hours we were free to go. Several times on the drive home Calvin’s eyes momentarily fluttered and blinked, once or twice his head or shoulders twitched and few more times he stared up to the right again, his eyes roving and jerking. These behaviors made me very suspicious and fearful of—if not seizures in and of themselves—an impending seizure.

Upon arrival home Calvin wouldn't nap so I put his harness on and we practiced walking. He bounded up the stairs with the agility of Superkid, scooted down them just as well and walked with incredible balance. This kind of stellar performance used to be a bad omen, like the calm before a storm. I remember saying frequently “Calvin’s walking and balance are better than ever” only to witness a bad seizure later that night. His enhanced capabilities were often too good to be true and became more of a foreshadowing than a cause for celebration.

So, just before Calvin’s bath last night, I wrote in my journal about the harbingers of the day and ended with the words “suspect seizure tonight.” About five minutes later my suspicions were confirmed.

Calvin was headed up the stairs for a bath. At the bottom step, he stood erect and still while his face went blank. At that moment I knew something was wrong, so I scooped him up in my arms as he let out a shrill cry. I felt his muscles clench then his body froze rigid like a plank. As I carried Calvin to the couch I yelled for Michael who came immediately. There we helplessly watched him—like countless times before—for two, blue minutes. It had only been ten days since his last seizure.

legally blind times five

My six year old son is legally blind—times five—and he suffers both ocular and cerebral visual impairments besides the epilepsy and other developmental delays.

As a preemie Calvin’s eyes appeared large and inky like a shark’s. It was clear that he really wasn’t seeing us until one day, when he was about four months old, I was cradling him in my arms as he was crying. That moment—looking down at him—was the first time he locked gaze with me as tears welled up and cascaded down our cheeks.

My husband, who is a professional photographer, had a theory. While crying, Calvin squinted which might, he said, produce the effect of a small aperture bringing objects into focus. He also thought it possible that Calvin’s tears acted as lenses, and it was his opinion that—under those circumstances—Calvin was seeing me.

Hastily, we took him to an ophthalmologist. Over the next several months at each of three checkups we expressed our great concern about Calvin’s vision and the impact that might have on his development. The doctor responded to us, each time with a hideous bedside manner, saying that while Calvin’s vision was poor it wasn’t bad enough to warrant glasses. We stopped seeing that doc.

Soon after, a neuro-ophthalmologist in Boston informed us that Calvin’s acuity was 20/1000 (legally blind is considered to be 20/200) and that he likely had a cerebral impairment. He also suffered nystagmus, which is the constant jerking and roving movement of his eyes, as well as intermittent esotropic strabismus, or crossed eyes. Glasses were prescribed immediately. Calvin was just eleven months old.

What remains unclear about Calvin’s vision is not his acuity but, because of his cerebral visual impairment, the way his brain interprets the images he sees. At six and a half he is just beginning to show an awareness for obstacles on the ground that he must step over or around. His depth perception never developed and he is in constant danger of running into corners, misjudging distances and falling over our sleeping dog. The antiepileptic drugs exacerbate the problem. So, I hold on tightly to his harness in case he falls, and we practice walking around the house in unison most of the day.

What is clear is that Calvin's vision, albeit still poor, is improving. A successful eye surgery to correct his esotropia has helped a lot, and for that we are very thankful. Now if he would just stop poking his eyes, but that is another story.

if it were mine

When I was in high school I worked as a lifeguard at several community pools. It was at one of those pools when I first encountered a child with Down syndrome.

I don’t remember his name, and his age was unclear, but I suppose he was a teenager. He'd appear often on the pool deck, drop his towel, whip off his shirt and take a running dive—more like a painful belly-flop—into the water. He’d swim flat-out with windmill arms for about ten lengths before hopping out, beet red. Then he’d dry off, don his shirt and exit as swiftly as he had arrived. I have thought of him often over the years wondering what his parents were like, who his friends were and what he liked to do besides swim.

Throughout my college years I continued to meet a handful of other youths and adults with Down syndrome, mostly at grocery stores, bagging my food items or retrieving carts with what seemed to me great care and pride. I happily engaged with them if they showed any interested.

And while watching the film Fried Green Tomatoes nearly twenty years ago I was quite moved during a particular scene. In it, Jessica Tandy plays Ninny Threadgoode, an old woman living in a nursing home who, at one point wearing a bright smile, talks about her child in a soft southern drawl:

"When he was born, the doctor said it would be best if I didn't see him. He said his mind wouldn't develop past the age of five, and I should put him in an institution, because the burden of raisin' a child like that would be too great."

She went on to say:

"I smiled at him and I asked for the baby. Why, from the minute he was born, Albert was the joy of my life. The Lord's greatest gift. I don't believe there was a purer soul on this earth. I had him with me til' he was 30. Then he went to sleep and he didn't wake up. Sometimes I can't wait to get to Heaven to see him again."

That scene left an enduring impression on me though it would be years before I had a child of my own.

My observations and encounters—and subsequently the film scene—came together into a kind of mosaic that compelled me to ask myself, even as a young person, “what if I had a child with Down syndrome?” I wondered if I might become depressed, fall into a downward spiral and plunge deep into a black despair. Might I run away or kill myself? My answer was always a resounding “no.”

No, I wouldn't. I'd remain the hopelessly optimistic person I have always been. I would prove to be a wonderful mother to this child. He would become the light of my life and I would help him realize his full potential. I would love him for all of his features unique to him.

Thinking back, I am thankful that these questions occurred to me. I have no idea whether my peers pondered these same kind of realities. Calvin doesn't have Down syndrome but was I having some sort of premonition about him? I don’t think so. My query might be more adequately explained by the fact that I have always thought it paramount to consider the life of another and wonder how it would be if it were mine.

sick. lovesick.

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

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

inertia

Contrary to popular belief, epilepsy is not a benign disorder where you take a pill and everything is hunky-dory. Most people who are lucky enough to have their seizures controlled by one medicine—or often as many as two or three—suffer unpleasant, sometimes debilitating, side effects.

One of the most heinous consequences about Calvin’s intractable epilepsy—when the seizures are not controlled with treatment—is its impact on his development.

Calvin’s development has always been slow like molasses. It took him months before he could hold his head up. He couldn’t roll over from one side to the other until he was over a year. At fifteen months he was just beginning to drink from a bottle—as long as we held it for him—and he wasn’t able to get into a sitting position on the floor until he was a year and a half, and at that, it was an arduous task.

Just before Calvin turned two he started chewing food safely, trying finger foods and reaching for objects with more purpose. His visual tracking was improving though remained limited and delayed. Around his second birthday, after countless hours spent practicing on our hands and knees, he could crawl a few feet. But then came the seizures and with them came the drugs.

Within the first six months after his epilepsy diagnosis Calvin’s development continued to plod along at a snail’s pace, but progress was evident nonetheless. He took his first steps when he was nearly two and a half but his balance was such that he looked like a novice on a tightrope. Spills were frequent and since his protective reflexes were practically absent we remained at his side—as we do today—to prevent injury. But the seizures increased and so, concomitantly, did the drugs.

Whenever we initiate a new antiepileptic drug (AED) or increase the dose of an existing one, Calvin goes berserk for four or five solid days. He screams and whines terribly but then, worst of all, he looses acquired skills. Just when he had learned to pull himself up into a stand we changed his meds and he lost it. He used to answer our simple questions with a quick, affirmative inhalation, akin to the way some French say “oui”, but we were forced to alter his meds again and that wonderful expression vanished.

A few months before Calvin’s third birthday I was convinced he’d be walking by himself at any moment. That dream has never materialized though I practice with him like a coach drills her athletes, and for hours every day.

By the time Calvin was almost four he had progressed to crawling up the stairs, with help from us. He was gaining some strength and coordination and had begun to engage with his world. Then, however, we initiated the Ketogenic diet, and while his three seizure drug doses remained the same, the diet altered his metabolism and his AED blood levels jumped as much as thirty percent. Unfortunately, the seizures stood their ground. Calvin, on the other hand, did not. He fell into a kind of stupor. His bright eyes became lackluster, dead orbs, he hardly smiled and he no longer had the desire, strength or ability to crawl up the stairs.

While on the diet for over two years his development essentially plateaued. Nearly three years later Calvin is doing little more than he did when he was four, though a radical change in his medication has lessened his seizures and significantly modifying the diet has brought back our happy, smiling boy.

It is difficult to know what exactly is causing Calvin's increasingly protracted development—if this inertia is because of his deficient brain, the scourge of the seizures, the drug side effects or, most likely, some dreadful combination of all three. However, no matter how you slice it—and in the unlikely event he'll outgrow the disorder—the seizures and the drugs continue to be ghastly offenders and risks to our little boy's life. We need to find a cure.

Please continue to share Calvin's story with your friends. Help bring us one step closer to a cure. Like Calvin, just do it one step at a time.

out of control

Shortly after my father lost his long battle with cancer over fourteen years ago, I dreamt vividly about him in what has become a recurring nightmare. In the dream I'm a kid again playing in our gravel driveway with my friend Monica. My father goes to get something out of the garage. As he lifts the wide, rolling door hundreds of large, colored helium balloons burst out. Each is tethered to one thick, braided rope loosely coiled at the entrance.

The huge mass of balloons escapes swiftly into the air and as it does the heavy rope snakes and flops like an errant fire hose. Inadvertently, my father steps into the center of the coil and—like in seafaring movies—becomes entangled. The end of the rope lassoes one of his ankles, yanks his feet out from beneath him, and seems to suck him upwards with the might of a tornado. As I frantically reach out to him he silently sails away, his strong, slender arms outstretched beseechingly.

Craning my neck and shading my eyes from the sun I watch my father, red-faced and upside down, as he soars above, diminishing in size until he and the balloons appear as a speck. My horror is—not only in my acute awareness of his impending demise—but also in my utter lack of control in either preventing the situation or from saving him. I awake from the dream suddenly with a hollow, sick feeling in the pit of my stomach.

This same ill feeling has become familiar to me since my son started having seizures when he was two. There was a time when Calvin was having one to two dozen lengthy tonic clonic (grand mal) seizures each month even though he was on three antiepileptic drugs, plus a rigorous diet, all aimed at curbing them. Each seizure is as unsettling as the last and they appear as an infinite chain.

Calvin has seized in the bath, he has seized in his crib, in his johnny-jump-up, in the grocer, in the doctor’s office and in the car while speeding seventy miles an hour down the highway. And though we are doing everything in our ability to prevent this persistent trauma to our child we feel ultimately powerless and out of control. The feeling is loathsome and bilious, and though I try to maintain control and hold on to hope as tightly as I can, I still feel Calvin's condition slipping just beyond my grasp.