10.31.2011

mom and me

“Hi, hon,” my mother says warmly and excitedly when she hears my voice on the phone. That’s how I know she still knows who I am—the Alzheimer’s not having completely eaten her brain to cheesecloth quite yet. We talk on the phone for ten or fifteen minutes, the conversation circling round and round like a carousel. She asks me things like how old Calvin is—though doesn't remember his name—or how much he weighs, at least three times in the course of a short call. She always pipes, “So, what’s new with you?” This time I tell her that it’s a lazy day and that Michael is cooking a pork roast that accidentally thawed when our freezer got unplugged. “I’ll be right over,” she quips—her standard reply any time I mention good cooking. I ask her what she's up to and she says, “I don't know quite what I'm doin', but I'm doin' it.”

Mom often tells me, in an earnest tone, how much she admires me for the job I’m doing raising Calvin, even though most of the time she’s forgotten he’s got epilepsy or what seizures are. “No one can ever know how hard it is ... only you can,” she adds. I thank her for her loving concern and tell her that I learned to be a good mom from her, and add, “yep, he’s kind of still a baby, Mom—a big baby,” She replies in a soft, motherly voice, “yes, but he’s your baby.”

I get a twinge of sadness wanting to hold her while knowing our love spans a three thousand mile divide. But I’m thankful for the frequent conversations we have, that she’s still as effervescent as ever. We talk about things including the weather and, since the exchange is sometimes difficult—because of her gradual loss of simple words and the ability to describe things—I tell her what I’m up to and try to engage her that way. This time I ask her what she might dress up as for Halloween. She tells me she’d be a witch. “Then you won’t have to dress up too much,” I joke. She laughs and tells me “they won’t let me have any candy anyway, at least I don’t think so.”

We end our chats with dreams of seeing each other again. I mention how I’ll try to get out to California and she responds saying that maybe she can fly out here for a visit. I wish she could see Calvin again, it's been so many long years, but neither could make the trip very easily. I know she still understands that I live far away, which is something of merit because often she doesn’t remember that she lives with my brother and his wife, can’t place Matt’s face. I joke in the usual Shake style, “he’s pretty ugly anyway, so you might not want to remember.” We have a good chuckle. Before hanging up the phone, we offer repeated I love yous that buzz and loop around each other like bees and birds. We can’t seem to say it enough. I put down the phone hearing her fumble with the one in her hands, wondering how to hang it up, and think, I’m her baby ... I’m still her precious baby. And sweet thoughts of her linger in my mind for the remainder of my lazy day.

10.30.2011

dagnabbit

Dagnabbit! How can a little half-pint body be right taking twelve-hundred milligrams of Rufinamide, thirty milligrams of Valium-like Clobazam and seven-hundred-and-fifty to a thousand milligrams of Levetiracetam every gosh darned day? How can a little brain be right?

Michael reminds me that Calvin’s brain isn’t normal to begin with, so perhaps all these innocuous looking pills we sink into his yogurt every morning and every night might be giving him a leg up. The newest one seems to be curtailing his seizures pretty well, though not completely. But the kid is, at times, a wacko, laughing hysterically at nothing—as if howling at the moon—poking his eyes out, grinding his teeth, snapping his fingers so fiercely I’m surprised he hasn’t sparked a flame, walking like a drunken cowboy and incessantly covering his ears as if hearing buzzes or bells or worse ... voices.

Calvin never was gonna be a normal kid, but if not for these goddamn seizures and these mind-warping drugs, might he not have become such a maniac?

But I guess if he’s going to be a kook—seems to me all kids are little weirdos to some degree (and I say that endearingly)—at least he’s the dagnabbit cutest oddball I ever did know.

Halloween 2008, 2007, 2009, 2010

10.29.2011

silent and macabre

Last night, for the first time in a long time, I feared losing my boy. That helpless, panicky feeling that I’d hoped never to experience again was fresh and stirring like I imagine the scent of coffee, alcohol or cigarettes is for hopeless addicts who’ve long since given them up—only the sensation for me is putrid.

We were all enjoying Calvin's twenty-third day of apparent seizure freedom—a longer stint than he’s had in over four years—after having introduced a third anticonvulsant drug to his regimen. I’d begun to hope that perhaps we’d found the silver bullet we’ve been searching for for so long.

Downstairs, Michael was packing for a week’s long trip to Virginia to shoot the James River while I was perched at my desk futzing around on the Internet. A calm yet telling voice tumbled down to us from the bathroom at the top of the stairs. It was Stacey, Calvin’s nurse. “Christy,” she called, and I ran. I reached her just before she laid Calvin on our bed. His body was stiff and awkward to hold, as if she were carrying an ironing board or perhaps a large skateboard, their silhouette appearing like a grotesque cross before the large windows overlooking our backyard. I quickly grabbed a towel from the linen closet and spread it over Calvin’s trembling body. His face was chillingly blue—and getting bluer—his eyelids and lips a purplish-gray reminiscent of gruesome zombies that haunt the streets at night each Halloween. I hadn’t seen that dark, sickening color in what seemed like years—not since our days of ambulances, paramedics, emergency rooms, intensive care units and intubations. He wasn’t convulsing violently like usual—rather twitching—but his respiration had ceased.

“He’s not breathing—at all—what do we do?” I begged his nurse. In a calm voice she replied, “let’s just give him a minute.” Her words were the reassuring, unflappable words of the trauma unit nurse she’d been. “Breathe, baby, breathe,” I cried, while stroking a thick lock of his slick wetted hair. Michael leaned in and kissed the nape of his neck passionately. “Come on Calvin,” he pleaded. Rudy moved in and tried to lick our faces. Tears began flooding my eyes, while Calvin's stared vacantly—large black disks rolling back into his head. No air passed over his lips. It was as if his throat were clamped shut, sealed in a vacuum, stopped up with some morsel of food, a grape perhaps. I wondered if he’d taken in water from the bath when he collapsed forward. Might he be drowning inside? I thought.

After several minutes his blocked airway was finally breached by one sweet, short breath, and then another, until the color began returning to his face, his charcoal lips resuming their rosy tint. This was unlike any grand mal seizure I’d seen Calvin have—silent and macabre. Concerned, the nurse said something like, "this is the kind of seizure you could miss because you wouldn’t hear him." Silent. Deadly, I thought.

Earlier in the day I’d spent hours thinking about an acquaintance’s boy, Ronan, my friend’s little seal. Images of her and her terminally ill toddler lurk in my thoughts daily. I try to walk in her shoes, wonder what it must be like realizing her child is dying, day by day, hour by hour, minute by minute, but not knowing at what moment he’ll be swept away in a breath, never to touch, to kiss, to embrace again. These are the pains she must feel constantly, embedded in the softness of her being like some inky tattoo that is both devastatingly beautiful to behold yet painful, toxic and deadly. I experience the intensity of these feelings only fleetingly, though I know the knowledge of my boy's mortality gnaws at the bones of my subconscious every waking hour then follows me into my dreams.

Deep sleep never came over me last night. I went to Calvin’s bedside with every whisper of his sheets, each whimper, each sigh, hoping not to find him face down and lifeless in his pillow. Now, even silence feels deadly.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button. We so need your help.

Calvin after his seizure, photo by Stacey Morse

10.28.2011

walking to woody's

Exactly one year ago Calvin walked down our sidewalk, holding my hand, all the way to Woody’s house three doors down. I wrote about it in a post titled hand in hand. He had never done that before. And he hadn’t done it since—at least not without refusing every few steps—until last Sunday.

Last year, the amazing and agreeable walking I had witnessed Calvin do was likely because of the impending seizure he was about to have the next morning—incredible balance and coordination being common harbingers of his seizures—like the calm before the storm. This time things were different. Calvin’s balance ambling down the paved path was not good—often careening to one side as I pulled weight against him to keep him upright. He balked at the task at first, but then seemed to understand our goal and kept on going. The big difference this time was Calvin’s nineteen-day seizure-free stint, breaking a two year old record, which might have accounted for his good behavior and willingness, the large doses of three anticonvulsant drugs accounting for his poor balance.

Though later, when Michael and I took him to the grocery store, I began to fear a looming seizure again, just like last year. Under banks of florescent lights Calvin instantly became a raving loony, laughing and screaming hysterically in the cart, kicking and flailing like a madman. Trying to soothe him I crouched down low and wrapped my arms around him as he giggled wildly and yanked my hair. His face had begun to flush. I knew I needed to get him the heck out of there, and so Michael finished the shopping while I walked Calvin outside, gripping his hand tightly across the parking lot to the car.

At bathtime and dinnertime Calvin was the same. I wondered if the stimulating visit to the grocery store had caused something in his volatile brain to snap, like tectonic plates that build up massive pressure until it’s too much and the big quake must joltingly release its wrath.

I sit with the baby monitor on my desk listening, waiting for the shit to hit the fan. But it doesn’t. At least not yet.

10.27.2011

while in the dentist's chair

I never much mind going to the dentist, which is a good thing since it is pretty much inevitable. That’s not to say it’s my favorite thing in the world, but I’m not afraid of the sinister, steely instruments and gritty hissing of rotary tools and suction hoses, and I’ve never suffered great pain in the chair.

When I was twelve or so I got my bicuspids pulled in preparation for braces. I remember the dentist placing a clear plastic mask over my face telling me to count backwards from 100. I got to ninety-eight before fading into oblivion. After the procedure my mom helped escort me through the back exit so as to spare the waiting room patients the gory sight of my swollen, gauze-packed mouth.

Once I had a root canal without any anesthesia. The dentist was certain the tooth’s nerve had died and that I wouldn’t feel any pain. Knowing that caused me little angst, and thankfully he was right. All I had to endure was the unnerving vibration of the drill and the faint, perhaps imaginary, smell of smoke.

During a visit to the dentist in my mid thirties I do remember crying. I’d been fitted with a putty mould meant to cast a cap for a brittle, dead tooth. I sat there silently with my mouth awkwardly stuffed, as if with an apple, and pondered anesthetics often used to numb pain, then thought of my father. When he was sixty-five he was diagnosed with multiple myeloma, a blood cancer that someone once described to me as leukemia for old folks. As part of his diagnosis he’d had a core of marrow extracted from his hipbone without the benefit of anesthesia, rendering him sickly pale and drenched in sweat. I’ve no doubt he endured the procedure with the utter stoicism of the Naval Academy graduate that he was. As I imagined that moment of my father’s absolute excruciation, while I sat comfortably reclined in a padded beige chair, I sobbed. The dentist and his assistant, oblivious to the nature of my misery because of my inability to explain through a mouthguard full of rubbery paste, simply, and compassionately, held my hands. I know my father had suffered terribly, yet he kept his feelings under lock and key and granted little to no access to those who might soothe him.

Michael and I take Calvin to the dentist twice a year for check-ups, cleanings and a fluoride varnish. In fact, we were there this morning. He does pretty well, particularly considering he likely has no idea why the heck his mouth is being invaded by a masked man under a strange bright light while we restrain him. We talk him through the entire ordeal hoping he might understand some of what we're saying, “Calvin, the doctor wants to look at your teeth, sweetie ... big open,” and then, “what a good boy!” I’ve heard stories about autistic children fighting tooth and nail only to be put under general anesthesia to tolerate such procedures.

After trips to the dentist I inevitably imagine moments when Calvin has felt his own pain, either from injury or illness. Often we’ve had no way of knowing the source of his misery because he can’t tell us, can’t point to the hurt. How do we—will we—ever know if he has a toothache, a sprained ankle or wrist, a headache, a tummy ache—or worse—appendicitis or a kidney stone?

My girlfriend whose child is also speechless, told me of a time her boy, not known for tantrums, cried and fussed and bawled and no one knew the source of his discomfort. His caregiver assumed it was simple fatigue. His mother got him home and began undressing him. When she pulled his shoe off she found that his toe had been inadvertently, though carelessly, bent backwards in the sock and his shoe had been put on over it. He couldn't tell anyone what was wrong. Thankfully, his sweet little toe bones and joints were pliable so no permanent damage was done. Hearing her recount this story made my heart break in two and bleed out.

I don’t even know how to end this story except to say that I hope someday Calvin will have the words to tell me when something hurts because—like going to the dentist—pain is inevitable.

photo by Michael Kolster

10.26.2011

time after time

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

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

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

10.25.2011

milkweed

The milkweed has turned to seed, its fuzzy beak-shaped pods, bearded with downy tufts, dot the roadside. When the weather starts getting colder and the autumn leaves shed, exposing naked branches, I know it’s time to start getting creative with Calvin. In a few months, when snow is on the ground, it will be too cold—not to mention impossible—for him to walk around outside. Inside there isn’t a lot to entertain us, particularly considering he's not much interested in playing with toys.

Sunday was beautiful, though only in the mid fifties as a brisk fall wind cut through my cottony layers. I bundled Calvin up and loaded him and Rudy into the car. We drove a few miles out to visit my friend Lucretia. In places, the rocky road that leads to Milkweed Farm is like a dry riverbed, gouged and rutted by hard rains. The bouncy ride sometimes makes Calvin laugh.

We drive right up to the house and I help Calvin roll clumsily out of the car seat as much on his own as he can. Rudy heads out to explore the farm which smells warmly of hay and manure, an aroma I remember fondly from horses that boarded on either side of my childhood home. Calvin wants to pat and bite the car forever, so I pry him loose hoping he won’t collapse in the mud in stubborn refusal. Smiling, Lucretia greets me with an embrace, her body warm and strong under a woolly knit sweater vest hugging a floral blouse. She’s got her jeans bunched up above a pair of thick, black, muddied rubber boots that look a size or two too big, though practical enough. With her curly dark, slightly graying hair loosely twisted and tied back, the farmhouse as her backdrop, she seems from a different era, reminds me of a Walker Evans or Dorothea Lang portrait, but lovelier. 

As we enter the house she kicks off her boots and helps me with Calvin, holding his other hand as he steps over the threshold onto a slate floor. It’s quiet inside, her four young children and husband gone out for the day. The air is warm and inviting, smelling of the sweet applesauce stewing on the stovetop. Calvin can’t sit still so, as we visit, I take him up and down the stairs and I wonder if he realizes he’s not at home. The banister, which is on the opposite side of the stairs than ours, confuses him and, as I help him go down, he lifts a leg high into the air as if stepping up. “We’re going down the stairs, Calvin,” I gently remind him.

It quickly becomes clear that it’ll be impossible to sit and have a cup of tea with Calvin in tow since he can’t sit by himself on a chair and probably wouldn’t if he could. “I have an idea,” I offered brightly, “why don’t we take our tea out to the car, buckle Calvin in so we can sit and relax for a while?” And we did.

While Calvin drank water from his sippy cup, happily sucked his thumb and poked his eyes—though we tried in vain to stop him—Lucretia and I sat facing each other, each with a knee propped up on our seats. I watched several laying hens skitter outside her door upside down in the reflection of the sunroof. Pigs squirmed, galloped and bucked, the dog barked and Sam, the handsome young farmhand, ran his wheelbarrow barefoot through the turf. As we sipped from heavy mugs of sweetened rooibos tea the cloudy sky darkened as a narrow angle of sun lit a stand of golden maples and oaks. It was a perfect late afternoon outing, as cozy as if we were seated in some cafe nook, surrounded by autumn’s beauty.

When our cups were empty and it was time to go she sent me home with a dozen fresh eggs, still warmish and damp in the carton from having just been washed. She tossed in a pair of coffee colored brass-studded cowboy boots that she never wears, knowing that I’d like them. We hugged and said so long.

I think we’re going to have to make a habit of this as the daylight shifts, the days shorten and the milkweed inevitably gets blanketed in snow.


10.24.2011

video clip

The video at the top right of this blog is of Calvin having a tonic-clonic (grand mal) seizure. The clip is three minutes long, but is missing the first 30 to 60 seconds of his seizure. I was trying to pry him out of his johnny-jump-up after I saw that he was having what’s called a partial seizure. I knew, by the color of his face and his odd, twitching grimace, that he was going to roll right into a big, bad convulsive one, which I was able to film.

Several months ago I decided to make the video public on You Tube, aiming to show the world the horrors of epilepsy, which few seem to know or understand. The first comment I received was from someone called Diddyalice:

why record thats just nasty

Followed by another comment by MegaShaff who added:

This is horrible. How can you record your kids doing this man?

I winced at such unkind, ignorant comments, bristled at the blatant examples of what I’d come to know as the stigma, misunderstanding and fear of epilepsy but that I hadn’t yet experienced in such a way. Michael suggested I pull the video from public view so as to spare my hurt feelings. “No,” I spouted, “this is an opportunity to educate,” and so I sat down to compose a reply to each. I wrote:

open your mind. don't pass judgment. the seizures are nasty, not the recording. i want to show the world how bad epilepsy is so that people DO SOMETHING ABOUT IT AND FIND A CURE.

And then:

if you don't have a kid with epilepsy i imagine you can't begin to understand a lot of things.


Since writing that I’ve received only kind, compassionate messages from unknown viewers. Perhaps sharing the video and my thoughts on epilepsy—as I'd like to believe—is making a difference. You can too.

Calvin during a tonic-clonic seizure

10.23.2011

my friend dick

My friend Dick Fisco is ninety-one years old. I run into him every few days when I walk Rudy at the college athletic fields a few blocks from our home. He still drives, and parks his car at the end of a neighborhood street where I often see him sitting, driver’s side door open, with his toy poodle Nikki on his lap.

It takes Dick a long time to do everything. About ten years ago he developed a condition called Myasthenia Gravis, a neurological disorder that cripples him, stoops him over to such a degree that he can’t see where he’s going, can only look at his feet beneath him. When we chat, I crouch down as low as I can get so we can look each other in the eyes. Bent over like that, the enameled medallions he wears around his neck dangle against each other with a satisfying clack.

We don’t visit long, just enough time to gather bits and pieces about each other’s lives. He’s a veteran of World War II, a widower of a French beauty and a retired New York City fire lieutenant.

A couple of weeks ago while walking Rudy I saw Dick’s car at a distance. His door was swung open as usual, Nikki barking like crazy from inside, though no Dick in sight. I got worried. But as I approached I saw him sitting sideways behind the wheel crumpled over his knees with his feet firmly planted on the ground, thus hidden from view behind the door. As I got closer I could see splotches of blood everywhere, on his sweaty face, his coat, his jeans, his hands, and he pressed a wadded up tissue around a bony knuckle. “Hey, Dick, are you okay?” I called. He cinched up his brow, craned his head up to greet me, “I was just saying, ‘I hope Christy comes along.’” He’d taken a fall the day before and landed on his knuckles. He’d ripped off the scab shoving his hand into his pocket trying to retrieve the medicine he’d forgotten to take. “Can you put this bandage on my finger?” I fixed him up then helped him take off his heavy coat. He hadn’t been prepared for an eighty degree October day when he had left the house that morning.

Squatting at his feet I looked up at him as he extended a trembling hand and softly touched my cheek. “You are so kind,” he said in a quivering voice, “who talks to an old man?”

He asked me to open the back door to find a copy of his memoir stacked in a box with the others. I fished one out, peeled off the thin plastic wrapping and handed it to him. In wobbly penmanship he scrawled the date, my name, then, Thank you for your friendship. I patted him on the shoulder, made certain he’d be okay, then went on my way walking Rudy in the fields, my head nodding over the warm reflection of the open book in my palms.

A few pages into the book, above a dedication to two of his wartime buddies who died in battle, he writes:

No greater love than this hath no man than to give up his life for his friends.

With moistened eyes, it made me think of all the wonderful friends I have that, perhaps without knowing it, help get me through the rough times, the grief and the loss I've experienced since Calvin was born, and who've celebrated a few triumphs with me. Though Dick had never met Calvin at that time, he knew of him, of our struggles. Dick mentioned once how cheerful I seem. “It's a miracle,” he said. I’m not sure I really believe in miracles, but if there’s anything close to one it’s all the amazing friends I’ve met through the years, some who’ve come and gone, others who’ve remained by my side through thick and thin. Perhaps they're why I'm so upbeat most of the time. And how lucky am I that Dick Fisco is one of them?

Richard D. Fisco

10.21.2011

little ellis

Like I’ve said before, there’s something about sushi that brings people together to gab, gets conversation flowing, lifts the spirits, perhaps.

The other night I was in with my out-laws—I mean out with my in-laws—at our local sushi joint. After a very enjoyable hour with a basket of shrimp and vegetable tempura, a plate of glistening seaweed salad, a platter of baby hamachi sushi in ponzu sauce (their first—and I thought heroic—real try at raw fish,) a huge bowl of soba noodles and a glass of Pinot Grigio, I excused myself to go to the bathroom. In the narrow, dimly lit hallway I heard a pint-sized voice talking to me. I looked down to see a sweet round face, beautifully framed in silky dark-blond hair, beaming up at me. “I’m in Mrs. Sciacca’s class,” she chirped cheerfully. At once, I knew who she was, “oh, yes, but I forget your name.” She reminded me, “Ellis.”

I told little Ellis that I remembered her from my visit to Calvin’s first grade class, the one he’s mainstreamed in for a portion of his half-day at school. I’d gone in to tell the kids a bit about Calvin since he can’t do it for himself. They sat around me in a circle as I told them about his epilepsy, his seizures, his trouble learning all things, and then they rattled off some questions. But before we’d gathered I’d been sitting with Calvin and his one-on-one Mary on small plastic chairs around a low table. I believe Ellis was the first child to introduce herself to me. I’d complimented her on her cute name and noted, in my mind, the fact that she’d lost some teeth recently. Just like Calvin, I thought.

“What a good memory you have,” I said as I knelt down and looked into her bright eyes. “You asked some very good questions about Calvin that day,” I added. I wondered if she was eating sushi with her parents, and asked. She extended a dainty arm with a pointed finger toward the back of the restaurant. I patted her head. With a huge smile on my face I practically skipped to the far table in the corner where two women and a couple more kids were sitting. “I’m Calvin’s mom,” offering a hand to Ellis’ mother, “he’s in Mrs. Sciacca’s class with Ellis,” then mentioned I’d met her daughter when visiting the class. Ellis had told her mother about Calvin, which made me smile again. I gave one of my business cards to the women—the one with a photo of Calvin and me on front and, on the back, the web address to the blog—then bid them goodnight. “I’ll see you again soon,” I called to Ellis, remembering I’d volunteered to read books to the class.

As the three of us left the restaurant my mother-in-law said goodbye to the children. In her signature spunky style she crouched down and gave them each a spirited high-five. Earlier in the evening, when talking about her degree in elementary education, she had mentioned that little kids weren’t really her forte, that she was better at relating to teenagers. At that moment she could have fooled me ... or maybe it was the sushi.


10.20.2011

trade-offs

Today is day fifteen since Calvin’s last observed seizure. I say “observed” because we never really know if some of his vacant stares, manic laughter or shoulder shrugs are seizures. It’s the longest period between seizures since early April. The next record to break, if he makes it past today, is seventeen days, which happened three different times back in the first few months of this year. At that point Calvin hadn’t gone seventeen days between seizures in almost two years.

Keppra, which we just added to the other two antiepileptic drugs in his regimen, is one he’s tried before, five years ago when he was just two and a half. It worked to extend the period of time between seizures, once as much as six weeks, but he still had episodes of status epilepticus, suffering as many as ten or twelve in a day that would roll into a prolonged tonic-clonic (grand mal) seizure lasting twenty minutes or longer. On one occasion we thought we might lose him during a forty-five minute seizure.

Epilepsy, seizures and drug treatments were new to us back then. When the Keppra, at a relatively high dose, wasn’t stopping the clusters of seizures that continued to occur, his former neurologist pulled him off in favor of an older drug known for its efficacy but also for causing bad side effects. It hadn’t occurred to me at the time to ask if adding a second drug to his Keppra protocol—one good for stopping clusters, such as a benzodiazepine—might work. Makes me wonder now, woefully, if perhaps we might have spared Calvin five years of hundreds of miserable seizures, debilitating drug side effects and scores of missed milestones and lost skills.

Instead, we moved Calvin from a drug that had no obvious bad side effects, at least none that I remember, to a drug, Depakote, that turned out to be less effective, created a zombie-child, robbed him of many of his newfound skills and began damaging his liver. The gradual increase in seizures he experienced on Depakote did not abate for years after coming off of it, even when taking three antiepileptic drugs at one time plus rigorous dietary measures.

So, although Calvin is “enjoying” apparent seizure freedom these past fifteen days, he’s been a raving lunatic at times, laughing so hard he collapses, flailing so spastically at mealtimes he can’t manage to try using a spoon, (which he’s still a novice at, though we’ve been practicing for over five years,) whipping his head back and forth so wildly that his neck cracks, (though perhaps that is his goal,) and crying at times for reasons we cannot begin to understand (Calvin almost never cries anymore.) At best, drug treatments are an abysmal trade-off for seizures—a band-aid, not a cure.

Please share Calvin’s Story with others. Help bring us one step closer to a much-needed cure for epilepsy. We do the hard work—you just push a button.


10.19.2011

calvin's mark

Every weekday, just past twelve-thirty, Calvin’s bus pulls up to the end of our drive. Mary, his one-on-one, hands him over, his floppy, clumsy, heavy body awkward to handle coming down the stairs toward me. She tosses me his lunch box and satchel then we walk hand-in-hand across the lawn as I call goodbye to his driver, Cindie, from over my shoulder while gripping Calvin's wrist firmly to keep him upright.

In the zippered pocket of his threadbare, floral satchel—a backpack really, but one he can’t wear—I usually find a series of folded colored papers. I look at them all fleetingly. A red one advertises the school’s family pizza night, a yellow paper tells about visiting artists, a blue one that describes a read-a-thon might double as an order form for first-grader books, an orange one talks all about the Halloween parade and after-party that we won't be attending. One by one I toss them all into the recycling bin—Calvin won't be participating. The one I keep, at least for momentary reference, and read in detail, is the one that Mary fills out describing Calvin’s day, what therapies he received, how he did, how much water he drank, how his balance and behavior were and the time, size and consistency of any bowel movements he might have had, (he's prone to constipation because of his low muscle tone, and I must manage it closely with medicine.)

On somewhat rare occasions artwork comes home. Often it’s a drawing, or two, from some of Calvin’s classmates in his mainstream homeroom. Once in a while I’ll get to unfold a work of art that Calvin “made” with help—perhaps a huge, tangled scribble on a page, a cut-out in the shape of his hand made into a turkey, a colorful paper jellyfish with crepe ribbon tentacles. Even though Calvin did little to no work in making these keepsakes I know his precious hands were on them, even as Mary’s were guiding them like a puppet’s.

Each one of these gems that has come home from school with him I’ve saved in a slightly unruly pile shoved into our buffet cabinet along with wads of colored tissue, recycled wrapping paper, raffia, small ornamental gift bags and rolls of iridescent curling ribbon, all anchored into place by a stack of board books that Calvin doesn’t look at anymore. I imagine most parents keep their children's masterpieces just like my mom did, neatly printing my name in black felt tip marker on the lid of a misshapen shoebox. My mother and I enjoyed pulling each dusty faded, crinkled creation out of a long-forgotten box fished out of the basement when I was in my twenties.

But I don’t hoard these sweet, colorful crafts to give back to Calvin when he’s grown. I keep them to look at later, in the case he dies before me. It’s a morbid thought, I know, but not one that is unrealistic or out of the realm of possibility in the world of epilepsy. And certainly when I began collecting them the chance of his premature death seemed very real to me. After all, we came so close to losing him when he was just two-and-a-half during a seemingly unstoppable, forty-five minute seizure.

When I was in my thirties I remember grieving my father’s death every single day in the year before he actually died. I knew the cancer was eating him alive. He was losing weight, suffering pain in his jaw and sternum, catching pneumonia, going to the hospital, taking more and more morphine. I could see it coming, and grieving the gradual loss of him by bits and pieces, day by day, while he was still alive seemed to make the tragic thrust and impact of his death somehow easier.

It’s possible I’m doing the same thing by mournfully saving Calivn’s happy scribbles and each gluey, glittery scrap his grubby little fingers have patted. Maybe I’m preparing myself for the worst while still hoping for the best. But perhaps, once in a while, I should pull out that disheveled pile of decorations and doilies and, instead of seeing them as an ominous heap of bittersweet fortunes, I’ll try hard to purely—simply—smile at the papers that bare Calvin's precious mark.

photo by Michael Kolster

10.18.2011

sometimes lonely

Sometimes, when walking in an open field, the warm sun and wind caressing my face and Rudy happily trotting a few paces ahead, I am lonely for a Calvin who could be walking right beside me.

photo by Michael Kolster

10.17.2011

friends

Over the course of my lifetime I’ve had some amazing friends—boys and girls, men and women—of all kinds you might endeavor to imagine. We rocked on swing sets, climbed trees, squished slugs, played dress-up, fort, baseball, hide-and-go-seek, sharks and minnows and Hot Wheels. We made mud pies, baked cookies, sled down the cemetery hill, rode bikes, walked to school, spied on boys, cut out paper snowflakes, had sleepovers, watched movies, snuck into the pool after hours, tee-peed houses, drew pictures, wrote poems, gave each other gifts. We went camping and water skiing and swimming and bowling and hiking and snow skiing and walked on the beach, floated rivers, got lost in the Sierras and scaled mountainsides. We shared breakfasts and dinners and coffee and apple-pie a la mode while listening to live music. We sunbathed nude, painted our faces blue, played practical jokes, danced in our nightgowns, wore identical overalls, peed our pants, made out in cars, drank till we passed out and puked in the bushes. We traveled far, hooked up, moved in, boogied down, and slept over. We've laughed and cried and and hugged and kissed and screamed and yelled and argued and cut off. We’ve forgotten, forgiven, enlightened, learned, and loved.

Since Calvin was born, meeting and loving lots of incredible people continues for me. Some friendships stand the test of time, others drift through my life like a dandelion puff on a breeze, and I have fond memories of them all. But Calvin has added an interesting facet to my friendships and acquaintances.

When Calvin was an infant Michael and I read a book called Fragile Innocence by James Reston. It’s a journalist’s recounting of the difficulties raising his daughter Hillary who, after a short virus when she was a toddler, lost her ability to speak, began having seizures and gradually regressed into a serious state of mental retardation. He and his wife coined a term, The Hillary Test. Whether wrongly or not, the family began judging their friends by the way they treated their daughter. This struck a cord with Michael and me, having witnessed the gamut of responses to our boy Calvin.

Often, Calvin seems to be completely invisible to certain people, as if he were a veritable bump on a log. They engage with Rudy our dog but never with Calvin, even if he’s in plain sight screaming and flailing. Some keep their distance from Calvin—at arm’s length, eyes averted—as if he might be carrying some lethal contagion or resemble, perhaps, Rosemary's baby. Others try their best to relate in some way, albeit awkwardly and self-consciously, to our boy who doesn’t look at them, doesn’t seem to hear them and can’t respond to their questions. Then there are those who, whether they’ve met Calvin or not, happily crouch down close to him, sometimes right up to his face where he sees best, tussle his hair, smooch his cheeks, embrace his ever-growing floppy weight as if they’ve cared for a disabled child all their lives—as if he were theirs. These are the folks who, when we see them interact with Calvin, often bring tears to our eyes.

But even though I notice the myriad ways in which friends and acquaintances treat Calvin, and although sometimes I’m left aghast, heartbroken or peeved, it really doesn’t matter in the long run. I know it takes all kinds of folks to make the world go round, folks who are to differing degrees—some more, others much less—able to deal with the curveballs and oddities that life throws us all. What matters most is the boundless love I feel from my decades’ of friendships, near and afar. I’ll forever be amazed at times such as when I strike up a conversation with an octogenarian and her husband and continue to correspond for months if not years, or when a beautiful Japanese woman and her Bosnian husband roll in and out of my life in a blink but I still think of them daily, or when I reconnect with kids—now adults—who I used to coach in swimming when I was just a teen, or when friends from my formative years still feel as close to my heart as when we were kids. Because the thousands of incredibly diverse friends I’ve met in my lifetime, who continue to touch and to move me, help make me into the person I am today—someone I have very much come to like.

10.16.2011

never

I never heard another word from Calvin's mouth after he once said mama when he was eighteen months old—before his first seizure.
Calvin never made a wish then blew out a birthday candle.
He never jumped onto our bed to crawl in with us at daybreak.
I never went to sleep not worrying that I wouldn't wake up to the seizure that would take his life.
I never had a crayon flower drawn for me with the words I love you scrawled in the clouds.
Calvin never had a friend come over to play, and a friend never invited him over.
I never watched Calvin somersault and cartwheel, pick wild blueberries, walk along a wooded path, build a sand castle, or break a paper-mache piƱata.
Calvin never told me his favorite color.
He never had a month without seizures in over four years.
Calvin never got money from the tooth fairy—proabaly didn't even know his teeth fell out.
He never drank out of a cup and set it back down on the table.
I never took Calvin trick-or-treating, he never held a bag full of candy—or any bag—in his hands.
Calvin never ate a piece of pizza, never took a big bite off the end of the floppy, cheesy, saucy triangle—doesn't know what a triangle is.
I've never given Calvin less than six different drugs multiple times each day since he was three.
He never put a round peg in a hole, stacked blocks, worked a puzzle, folded a paper airplane, pointed his finger at an object, or fed his dog a bone.
Calvin never asked me why the sky is blue.
I never told him.
I'm sure I never will.

10.15.2011

back and forth

In the span of a few seconds I can go back and forth between utter contempt for my child to the purity of bliss just beholding him.

For instance, even though it isn't his fault—it's the seizures' and the drugs' fault—sometimes I loathe Calvin's poor balance. The other morning, while he was playing with the shutters in the bathroom, as I was seated on the toilet lid holding his harness, he suddenly careened so quickly that he might have cracked his skull on the side of the porcelain sink if I hadn't caught him and—impatiently—redirected him.

Then he led me outside for a thirty-minute circus of righting him, supporting him and breaking his falls as he stumbled around the yard like some poor hack obliterated by a dozen shots of whiskey topped off with a couple of six packs of beer. I prevented him from breaking his teeth on the iron bench while trying to bite it, from poking his eye out on a few blunt, sharp branches and from whacking his noggin on a rock—exasperating to say the least.

Back inside I encouraged him to play with some toys on the floor. Kneeling, he discovered a shoebox and picked it up to bite it before setting it back down. Its hinged top popped opened revealing several of his favorite colorful toys inside, rattles and the like. Calvin seemed completely oblivious to their presence. After about five minutes he accidentally put his hand inside the box on top of one of the toys, picked it up and began chewing on it. I just rolled my eyes.

And his screeching, like some rabid hyena, sends me to a hellish place that I'm not sure I can even describe except to say I detest it, along with the matching diabolical expression he gets on his face. Again, I know it's not his fault but nonetheless at times it's like water torture.

But then, inevitably, whether in his high chair, his jumper or on our bed, Calvin recognizes my presence, perhaps looks me in the eyes for a second or two, reaches out and pulls me close. Sometimes I get a slobbery kiss on the cheek with his open mouth, teeth bared, and at others he affectionately yanks my head around by my hair, like some comic strip caveman, and—if I'm well rested—I laugh, though I'm in some pain.

My moods with Calvin go back and forth like some kid (other than Calvin) on a swing, the ebb and flow of the sea's tides or the heavy rocking pendulum of a clock. One minute I'm utterly joyous and the next I wonder how I'll manage getting through the rest of the day much less a lifetime of this, day in and day out, for as long as the kid survives.

And then I stop in my tracks, realize how lucky I am to have this little boy who shouldn't have survived, this boy who lives in the moment—not the past or the future or the material. So, tomorrow is a new day, and I think it's that back and forth—the ups and downs—that must be making this curious world I love so much go round and round and round.

photo by Michael Kolster

10.14.2011

kindred spirits

On the drive north Tuesday I listened to Tears For Fears, Songs From the Big Chair ... twice and loud. The trip to Bangor is just over a hundred miles, perfect this time of year, the spicy colors of fall beginning to paint the landscape.

I remembered the first time I’d heard the album, I must have been about twenty-four. My girlfriend Lori had invited me along with a few friends for a water skiing weekend in eastern Washington. We trailed a boat behind cars packed with tents, water skis, sleeping bags, coolers, hot dogs, bags of chips and beer. Destination: Chelan, a long worm-shaped lake, the largest of its kind in the state, cold, deep, fresh and crystal clear—large rocks thirty feet deep looking as if you could reach out and touch them.

I quickly made friends with a tall skinny guy named John. He had short, thick, mink-brown hair, gorgeous Italian eyes—light in the center, dark around with thick long lashes—and sharp, high cheekbones. He liked smoking cigarettes, lots of them. To me, he seemed like the odd man out—unabashed, distinctive, carefree—and that’s probably why I liked him so much, seemed somehow like a kindred spirit.

One black night the two of us took the boat out into the middle of the lake, left the others behind. We hunkered down with our beers and he put on the tape. The smooth, crisp music cut through dark silence and echoed off of the shirred cliffs encircling the water. The sky was bigger than I’d ever seen it, billions of stars shining like sugar and salt on black velvet. I felt so small, and yet simultaneously enormous, as I was transported into space. The music filled the canyon ... the sky ... my brain. Every so often the coarse snap of a match caught my attention as a flame glowed behind cupped hands and the smooth draw of smoke fused with the ethereal sounds. There, alone in my mind under the cosmos—in fact in it—was, for me, a perfect moment in time.

Halfway to Bangor, cruising just over seventy miles an hour, I imagined not stopping, but keeping on as far as a tank of gas would get me—Quebec City, perhaps. I felt totally free—like in that boat a lifetime ago—flying down the road, my only companion a burlap bag stuffed with a t-shirt, toothbrush, camera, wallet, brush and cell phone all crumpled into a khaki lump on the floor of the car. With my worries behind me and the big sky above, I felt so unencumbered, like I hadn't in years. But I didn’t stop—couldn’t—I had a date with a friend who was in town for the night.

After checking into the Bangor airport hotel I climbed up on a padded stool big enough for two and made pals with the bartender. Nick poured me a huge glass of Pinot Grigio, on the house, while I waited for my friend. I’d never met her before, but I’d memorized her face from pictures and video: lovely and slender with light eyes the color of lake water and river stones, and long silvery hair swept back behind her ears. When she entered the bar I jumped off the stool and we embraced.

Susan—heroine, warrior woman, survivor, champion against the loathsome monster that is epilepsy. Founder of CURE, she travels to the ends of the earth to find one for our children, to end their suffering and their regrettable reliance on drugs. We shared wine and stories, got lost driving—and in conversation—but always managed to loop back around. While dining on Italian food, we spoke of our children, our families, of aging, illness and hardship, of motherhood, loss, marriage, pain, ignorance, hope, joy and triumph. Talking with her was like catching up with an old friend, a kindred spirit—simpatico. If not for our travel weary eyes, we’d have stayed up all night long like a couple of teenage girls camping out under the stars. Yet another perfect moment.

When I crawled into my hotel bed it was already the next day. Six hours later, after sinking into my dreams, I awoke in the darkness to the rumbling of Susan’s plane—like rolling thunder—rocketing her westward to wide open country, desert canyons and gorgeous, endless skies, where the simplicity of a song or a friendly smile can transport you to another space and time, and it does.

10.13.2011

be kind

Be kind and merciful.  Let no one ever come to you without coming away better, and happier.  

—Mother Teresa

10.12.2011

so not himself

When I went up to kiss Calvin goodnight on Sunday, after his third dose of a third antiepileptic drug that I buried—along with his others—into his yogurt at dinner, (one and a half of a round white pill, three salmon-colored oval pills and one half of this new baby-blue colored oval pill,) he didn’t smile. He almost always smiles, but not this time.

I gently lifted his head to give him a bottle of water, then stroked his face and told him I loved him. Since starting the new drug he’s been sleeping restlessly, and I’ve found him uncovered in the middle of the night, knees tucked up underneath his belly rubbing his head in his hands. Sometimes he whimpers.

It almost makes me ill—carves a nervous hollow pit into my stomach—to think about how these powerful drugs must make him feel. I wonder if he wonders why he feels so odd, so bad, so euphoric, so irritable, so dizzy, so weak, so headachey, so uncoordinated, so tired, so wired—so not himself. But then, what exactly is himself? I ask. Calvin has been on nine different courses of antiepileptic medications, sometimes as many as four at a time, since he was only two years old.

I worry these drugs are stealing away my Calvin, slowly turning him into a psycho right under my nose, but at such a rate it’s impossible to tell if it’s the drugs changing him or just the natural development of his personality. I can’t know. I’ll never know. Who might my son have been if not for these frigging seizures and mountains of chemical drugs? It’s just no life for a child, is it? Can you imagine if it was yours?

Please share Calvin’s Story with others. The only hope for a cure is to raise epilepsy awareness to an appropriate level that highlights its prevalence, its magnitude, its suffering and its costs. It’s as easy as pushing a button. You can do it, I know you can.

10.11.2011

status

During the first year and a half after Calvin’s epilepsy diagnosis we found ourselves—miserably—in the hospital at least a dozen times. I’d call the ambulance, they’d rush him to the emergency room of our local hospital, and he’d be transferred via a special pediatric transport team to the Maine Medical Center in Portland, thirty minutes from our home. There he’d be admitted to the pediatric intensive care unit (PICU) where we’d stay for up to three days. All this because of something called status epilepticus.

Status, for short, is a serious, life-threatening prolonged seizure, or series of seizures. In Calvin’s case, he’d have eight to ten seizures in a row. Every forty-five minutes he’d wake to a seizure then fall back to sleep only for it to happen again and again. After that many seizures he’d go into a tonic-clonic (grand mal) convulsive seizure that would last twenty minutes or more. Once he had a forty-five minute seizure that we feared would take his life. I was literally kissing him good-bye when he finally came out of it.

The longer a seizure goes the harder it is to stop and it will eventually cause brain damage and failure of the vital organs. It’s as simple—and devastating—as that.

On a repeated stay in the PICU I recall a doctor about our age, perhaps a few years older, whom I’d seen there on previous occasions. He wasn’t too tall, had longish, curly hair that was stylishly messy and a handsome layer of facial stubble. He looked like the kind of doc you see on those prime-time hospital television series. The doc loitered around the PICU wearing jeans, a plaid shirt and a fleece vest, then rolled open the glass door to Calvin’s room and stepped in. “I’d like to have a talk with the two of you,” he said in a southern accent, like Matthew McConaughey, who he kind of resembled, but with glasses. “Have a seat,” he continued. “I prefer to stand,” I replied. He insisted I sit. I didn’t, because there was a hint of condescension in that smooth southern drawl and I wasn't going to let him look down on me, too. I was his equal and he needed to know that.

For at least fifteen minutes he passive aggressively lectured us on how we needed to relax about these seizures so we could find a way not to end up in the PICU so often. As he feigned true concern I listened to his mellow rant and then asked, “Do you have kids?” He told us of two, an eight year old and a six year old. “Do they have intractable epilepsy or some other serious illness?” I asked. “No,” he replied blandly. I continued, “then you can’t really know what it’s like, can you? Even though you probably see a lot of kids in here suffer from seizures, perhaps even die, you can never really feel the anxiety and/or smell the fear of death from one of these bad ones.” I had his attention so I went on, “We’d love not to be here, but Calvin keeps having status, and as long as he does, we’re coming. Now we’d like some privacy, thank you.”

Regrettably, in the following months we landed in the PICU several more times and though we got glimpses of that same doc, he never approached us again. That was just fine by me.

It has been four years since Calvin has been admitted to the hospital for seizures. We hope to never find ourselves there again, though until his seizures are controlled, the risk, the uncertainty and the fear, will never go away.

Please help us find a cure for epilepsy by sharing Calvin’s Story. We do the hard work, you just push a button.

photo by Michael Kolster

10.10.2011

dog days

I like to think of myself as a kind, benevolent human being, but sometimes I can come off quite the opposite, particularly on weary, frustrated, angry or sorrowful days. Saturday was a good example.

Friday night Calvin got his first dose of what would have been considered his ninth antiepileptic drug except that he’s tried this one before, when he was just two. And as sick as the idea makes me, since there doesn’t seem to be any other choice, he’s now on three powerful anticonvulsant drugs since his seizures keep inching their way back up.

Saturday, gorgeous warm weather invited the two of us outside, Calvin in denim shorts and a striped apricot polo, me in a pair of clam-diggers—my holey jeans rolled up mid-calf—scuffing around in orange flip-flops and a sleeveless white cotton blouse. It must have been eighty. Much to my chagrin, Calvin stumbled around the yard as if the world was spinning—no doubt for him it was. As he toppled and tripped, tumbled and tipped, I caught him with a bent knee, an outstretched arm or a yank on his harness. He looked like a boy who’d just jumped off of one of those low, flat merry-go-rounds, the ones that are kid-powered with elbow shaped handles you push before jumping on and spinning around until you get dizzy—or sick. Except this was because of the drugs. So, rather than torturing both of us any further I loaded Calvin into the stroller, clipped Rudy on the leash and headed for campus.

Folks were out in droves—students, teachers, a bride and groom with their guests, families, dogs and squirrels—enjoying the balmy weather. Calvin sat calmly sucking his thumb and poking the bejeezus out of his eyes. We happened upon a familiar dog named Bella with her kind elderly owner. The college campus seems to allow dogs to roam freely and the two old dogs played like a couple of puppies while her owner and I chatted.

Rudy spotted another dog nearby. This one, a stout male yellow lab, was restrained on a taught harness. As Rudy happily—harmlessly—approached, the owner tugged on the harness raising the dog’s front paws just off the ground. After initial sniffs, the dog attacked. Rudy barked back before retreating. “Go away!” the wife of the owner scolded Rudy in an annoying tone while pointing a witchy finger, as if he were the trouble maker. I called for Rudy and he came. “He needs to be on a leash,” she barked. “I saw your dog initiate,” I replied confidently, then, “Rudy's friendly, just wanted to say hi.” “Then he’s gonna get attacked sometimes,” the man added crossly, keeping the choke hold on his jerky macho dog. All I could do was roll my head in a thoroughly apathetic manner. As the three of us sauntered away the couple kept yakking at my back. I punctuated my disgust of their sour spirit with a little implied fart in their general direction, figured it'd have more of an effect than flipping them the bird. My outward composure remained calm but inside my heart was pounding with ire.

As we walked home I thought of things I wished I’d said. You should think about cutting off some balls, I imagined saying or, grow some neuticles, or you’re just jealous of my well-behaved dog. Perhaps I should have stamped my forehead with the shape of a capital “L” using my thumb and index finger—LOSERS! I was in the mood to pick a fight, perhaps get into a brawl with the wife—pull some hair, scratch some eyeballs out—wanted to insult their stupid-ass kid who looked and was dressed like the boy from The Adams Family. I nearly looped back around to intercept them and give them a piece of my mind.

But in my seething fury I remembered something my mother-in-law wisely says, don’t get into a pissing contest with a skunk. I laughed to myself, my petty anger dissolving away, bent down and kissed Calvin, pet Rudy on the head and kept on strolling. And when we got to the corner a half block from home, Calvin adorably squealed with delight knowing we were almost there. I smiled.

photo by Michael Kolster

10.09.2011

think different

Okay, so this has gone viral on Facebook since Steve Jobs died, but I dig it too much not to post it here.

Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They're not fond of rules, and they have no respect for the status quo. You can quote them, disagree with them, glorify and vilify them. About the only thing you can't do is ignore them because they change things. They push the human race forward. And while some may see them as crazy, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.

—TBWA\Chiat\Day for Apple Computer

A young Bob Dylan - stylemarmalade.com

10.08.2011

sleep please

I’m not sure exactly why, (seizure activity or drug side effects?) but Calvin has been sleeping like shit again lately. As a rule, I always get up at least once (usually two or three times) to check on him when he's rustling in the sheets. For the past several nights, however, I’ve been up half a dozen times or more giving him water and repositioning him so his head is at the raised end of the bed to facilitate better breathing and digestion. Several times I’ve found him sitting bolt upright in a daze or sound asleep floppily folded in half with his face smashed into the mattress between his legs. So, I unhook one end of his safety canopy (an old forgotten netted hammock that is invaluable in its new use) and if he’s near enough to reach over the safety railing I hop up onto the step stool, grab an arm, drag his forty-plus pounds of dead weight up onto his pillow again—my collar bones and shoulders feeling as if they might snap—and pull the covers over. If he’s on the far side of the bed I’ve got to unhook the entire canopy (in four places) toss the ropey net back behind Calvin so I can get to him, unlatch both safety panel locks, lower it, reposition him, raise the panel, lock it and re-secure all four points of the canopy. Not much fun at ten-thirty, midnight, one-thirty, two-thirty, three-thirty in the morning when all I want is to be warm and cozy and ASLEEP in bed.

The other morning, due to wicked sleep deprivation, I had little patience for Calvin’s crazy behavior. When the bus came Cindie the driver asked me what was wrong. “Haven’t been getting much sleep lately,” I gruffed, “I don’t function too well when I don’t sleep.” She was sweet to notice, though I’m sure my tangled hair, furrowed scowl and dark baggy circles under my eyes were a dead giveaway.

As soon as the bus sailed down the street through pouring rain I reluctantly got on the telephone to attend to some Calvin business—school stuff, pharmacy stuff, doctor stuff, insurance stuff. I practically barked at an ed-tech from Calvin's classroom—might have bitten her head off if she were right there in front of me—though she hadn’t done anything wrong. I really had a severe case of the grumpies.

Outside torrential downpours raged. The skies darkened as if it were dusk and a bone-chilling dampness hugged me like a soggy blanket. From somewhere in my brain a pounding throb began knocking and pinging. I desperately needed a nap. I downed a couple of aspirin and tucked myself into bed, pulled my knees to my chest, overlapping my feet trying in vain to warm them. With the blinds lowered and eyelids closed my mind set off to race.

I wonder how Calvin is doing? Where should I move that rhododendron? When should I chop down that tree? I should write about this sleep thing. It’s raining so hard outside! Must remember blueberries. Got to walk Rudy. Need to order those pills. Looking forward to that burger tonight. I haven't got much time left to nap! Why can’t I fall to sleep?

Finally, after half an hour I fell into the sweet, black nothingness. Then the phone rang. Ugh! Had to get it in case it was about Calvin. It wasn’t. “Goddammit!” I screamed when I hung up, like the sleep deprived lunatic I’d become. I wanted to hurl the phone against the brick wall, shatter the storm window with it, stomp on it—something—anything! Just let me sleep! It took another forty minutes of mind-racing to fall back to sleep at the exact moment the campus chapel bells crisply announced noon.

In the end there was no morning nap and I felt much worse than if I hadn’t tried to sleep at all.

Sleep please. Is that so wrong?

photo by Michael Kolster

10.07.2011

forty-eight

I’d have to say it feels pretty darn good to be fort-eight. I’ve known since yesterday. It helped being able to sleep in until eight, something that I’m pretty sure I haven’t done in years.

The day was a darn good one as birthdays go—as any day goes, for that matter. Michael spent it with me, told me we could do anything I wanted. So, first order of business after hurriedly putting Calvin on the bus—Michael still in bare feet though it was in the low thirties—was to head to our favorite coffee shop and sip lattes while sinking into a lazy brown love seat.

From there we traveled up Route 1 a spell to a Wiscassett antique mall where we picked out a desk so that I don’t have to slouch on the sofa with the computer burning into my lap. By then it was lunchtime so we stood in line, bathed in sun and wind, at a little shack called RED’s Eats on the edge of the Sheepscot River. Michael found an open table on the back deck and sat with Rudy at his feet. “What would you like, deah?” asked a plump woman from behind a window who was sporting pink lipstick, a brassy hairdo and a thick Maine accent. ”I’ll have a lobster roll with mayo, a fried haddock sandwich with lettuce, tomato and cheese, small fries and two tap waters, please.” A few minutes later our order came up, the overstuffed buns set into crinkled foil squares on a red plastic tray. The sandwiches didn’t stand a chance.

Back in the car we warmed ourselves in the sun's luxurious heat, drove half-way back home then veered south on a winding road over tidal inlets, past salt marshes, bogs and wooded lots. At the end of the line gleamed a beautiful crescent beach and a vast sparkling blue sea meeting a similar horizon. We walked hand in hand to a rocky outcrop which we climbed, stepping gingerly between glistening clumps of blackish seaweed, to the dry rocks on top where we sat and gazed at the sights for a while. These gorgeous striated rocks sit perpendicular now, the result of thousands of years stressed by glacial muscle nudging them onto their sides. We walked back against the wind, the soft sand working my booted calves, my loose socks inching their way down with each stride until bunched uncomfortably in the arch of my foot. I told Michael as much and we chuckled.

When we got home I gave Calvin a big hug and he tried to wriggle his way out of my grasp. I didn't yield and eventually got a big smile as he shoved his arm into my mouth so I'd nibble it. He loves that. Later, after feeding Calvin dinner and kissing him goodnight, I sat down and wrote this in front of a rolling fire, leaning forward periodically for a sip of wine, while Michael cooked delicious mustard chicken, braised fingerling potatoes and steamed artichokes. Finally, I made a birthday wish on a single candle stuck near the middle of a small cheesecake.

Earlier in the day my mom had called and sang me Happy Birthday on the message recorder. I called her back after dinner and got an excellent off-key version from her, my brother and his wife. I told mom how it had been in the fifties today, nearly freezing at night, but expected to be close to eighty on Sunday. “How can they do that?” she asked. I giggled. She giggled with me.

I’d be remiss not to mention that one of the ironically beautiful things that happened on my birthday was to get a call from Calvin’s neurologist, something she doesn’t make a habit of. While sitting in the coffee shop earlier, Michael beside me, she and I discussed Calvin’s treatment options as I hushed my voice so as not to disturb the other patrons. We talked about his changing, increasing seizures, his brain’s development, the current meds he’s on and, most importantly, various drug side effects. Then, she thoughtfully added, “if he were my kid, I’d put him on Keppra.” And so it is, we will be adding to Calvin's current regimen the drug he first tried when he was two, hoping for a better outcome. Before I pushed “end” I said, “I love you.” She replied, “I love you too. Give a big hug to the little guy and the big guy for me.”

What better way to celebrate my forty-eighth birthday than spending it with Michael, Calvin and Rudy, getting calls and messages from old friends and family, eating amazing food, hearing my mom's happy voice, while surrounded by an abundance of beauty and love? I can't think of any.

photo by Michael Kolster

10.06.2011

river

You cannot step twice into the same river.  

—Heraclitus (c.540 - c.475 BC)

photo by Michael Kolster

10.05.2011

first grade seizure

Whenever the phone rings while Calvin is at school my heart jumps then beats a little faster. Today it did for good reason. Calvin had a seizure while eating lunch at school.

On the other end of the phone the nurse reported that Calvin seemed to be coming out of the seizure, that it had been two minutes, that his color was coming back into his face and that he was trying to suck his thumb. I knew by her description she was right. He’d been eating grapes at lunch in his adaptive chair, its large, heavy wooden tray locked on both sides with those old-fashioned bar latches you see on rustic bathroom doors. It was difficult and cumbersome to get off and Mary, his one-on-one, feared he might choke on a grape. But she managed to free it and held him in her lap as he seized.

I breathed shallow and short into the phone. I told them to put him on the bus right away, figured it’d be safer to have a dedicated driver plus someone to hold him instead of me glaring into the rear-view window trying to watch him and drive at the same time. Within minutes Cindie, his heroic bus driver, pulled up to the curb in front of our house just as rain began to sprinkle out of the dark sky.

Mary had held him in her lap for the short ride, then stood in the aisle and transferred him to my arms. She followed me down the steps and across the yard carrying his lunch box and satchel while raindrops splattered onto Calvin’s glasses and cheeks and a line of cars formed behind the bus. “Can you get Rudy in here?” I shouted over my shoulder as I carried Calvin up the stairs. I heard Mary pleading with stubborn old Rudy, then Cindie’s voice calling him, no doubt brandishing a dog treat in her hand. She keeps a stash of them, tosses one to Rudy every time she opens the bus door. “Thanks guys” I yelled from the top of the stairs as I went to lay Calvin in bed. “Love you,” called Cindie in a sorrowful voice. I could imagine her sad face as she said it. “Love you too,” I replied.

Calvin fell asleep within minutes, something he always does after these nasty grand mal seizures. He’s sleeping right now here beside me. I saw it coming again, said to Michael last night, “he’s winding up, and it’s only day five.” So today it's day six, the time between seizures moving in on us like the walls of a torture chamber or giant compactor, while we try in vain to push them out with all the muster we’ve got.

When it comes to Calvin’s treatment choices, I usually take the helm of a ship whose crew includes Michael, Calvin’s neurologist, her nurse and dietitian and Calvin’s pediatrician. I do plenty of research on the drugs, their efficacy and their side effects and end up—most of the time—with a gut feeling for which path to take. This time I feel like I have no clue. The options—none of them very good in my opinion—are to increase one of the two anti-convulsant drugs he takes, the one related to Valium. And though he’s got room to go up, it seems pretty clear that Calvin habituates to it, which is why, after time, his number of seizures sneaks back up. The second option is to try a new drug, but its main side effect is dizziness. Don’t get me wrong, all the seizure meds cause dizziness, but this one shows a markedly worse problem as compared to the placebo or other meds. Calvin already walks like a drunken sailor, so increased dizziness is one of the last things I want him to suffer—though isn’t it sick he should suffer at all? Doesn’t he already suffer enough? The last option on the table is to re-try a drug he tried when he was just two, the thinking being that perhaps, since his brain is different now, and since the seizures are different, and since the parameters for how much a patient can take are broader now, that perhaps it could work this time. That drug, however, can cause behavioral issues like the two he already takes. Insert F-bomb here.

But I can’t seem to get through to the crew. Been trying for over a week. So I’d better get back to my research and see if I can figure it out on my own, or at least see what my gut thinks.

Until then, little Calvin, sleep baby, sleep. This one is over ... for now.

10.04.2011

swimming

Every Thursday Calvin gets to go swimming at the college pool with the rest of his special ed class and a bunch from the other district schools. I have to say that it is a pretty surreal scene, but one that brings tears to my eyes every time I visit, nonetheless.

Michael and I walked onto the slick tiled pool deck wearing our street shoes afraid we’d be reprimanded. There was Calvin in his little polypropylene “warm belly” and a purplish-blue belted floatie riding up under his armpits. We smiled. Mary, his one-on-one, cradled him closely from behind as he kicked and splashed and flailed. He was immersed in the pleasure of the wet stuff, and getting to chomp on the little green plastic turtle he was clutching didn't hurt.

Sharing the shallow end were several other children bobbing vertically supported by floats. There was cute George, who has seizures too—and whose parents keep his head shaved nearly bald—silently sculling around with a look I wasn't sure was a sneer or a smile. Then sweet Olivia, who has Down syndrome, happily cackling and grumbling in her usual gravely voice that sounds something like a cartoon bear or a monster. Upon seeing Calvin she paddled her skinny body his direction, the tips of her pixie cut dipping in the water forming slippery brown ropes. Another girl who reminds me of Woodstock, (the yellow bird from the comic strip Peanuts,) jiggled toward Calvin as well, performing loops around him that could be traced with little hyphens like you see on greeting cards behind bees and butterflies.

A few lanes over waded a rotund teenage girl, her pony-tailed head and thick, rounded shoulders peaking just above the water like an island. She slowly dream-walked her way from one end of the pool to the other incessantly shouting, “no ... no ... no,” each time pointing a crooked finger at her chaperone. Her intermittent cries echoed eerily against the hard walls like some squawking bird in a cave.

In the corner of the pool deck on a flight of cold gray cement stairs sat a teenage boy with a mass of dark wavy locks. Semi-reclined on the awkward surface he finger-walked the tile walls before focusing on its shiny aluminum railing. He tapped its silver length with a knuckle, hugging his ear to it seemingly enjoying its vibration or tone, then went back to counting the tiles again. I wondered if Calvin will be doing the exact same thing in eight or nine years. No reason to think he won't.

It was a lot for me to take in—this rich, expansive scene of unusual kids, strange sounds, peculiar visuals—though not unsettling as it might be for some. I crouched poolside watching Calvin enjoy the water, then sputter and struggle against his physical therapist's gentle but firm clamp on his reclined forehead. I understood his spirited attempt at getting upright to let a burp out, having drank so much pool water.

As I watched the other kids I wondered what life was like for them at home. What were their parents like? Do they have siblings? Do they have friends? Calvin doesn't ... not really. Thinking about them kind of made me sad, contemplating their silent worlds, like some eerie, murky underwater realm that everyone wants—but no one really has—access to. And then I turned back to Calvin who, beginning to shiver, was still frolicking in the pool like he does in the bath every night, screeching with delight. Even if Calvin is in his own world, I thought, at least it's one that he seems to get a kick and a splash out of.

photo by Michael Kolster

10.03.2011

the things people say

I was pregnant once before Calvin. Michael and I were so excited, after all, we had both just turned thirty-nine and were beginning to sport some gray hairs.

About eight weeks into it I remember telling Michael, “I don’t really feel pregnant anymore.” A few days later a sonogram confirmed it—the technician searching in vain to find a non-existent fetal heartbeat where it once existed. “Are you sure? Are you sure?” I pleaded.

I knew miscarriages were common, but when it happens to you it feels bad, really bad. The first time I knew someone who had one she and her husband named and buried the fetus. My boyfriend at the time thought it odd, exaggerated. I didn't. All I knew was that I couldn't have a clue as to what it would feel like if it were mine and perhaps their ceremony was completely appropriate, necessary.

The doc—who I'd never met before—told me it might take a few days, perhaps as long as a week or more, for the “tissue” to evacuate my body naturally. He said it could happen at any time, even at work, and that it’d be messy, perhaps painful. My other option, he added, was to immediately get a D and C—dilation and curettage—like they do in abortions. Right there in his cold, square office, sitting on the other side of his imposing desk, I imagined trudging around like some sort of walking tomb, knowing that the little hardened grain of rice inside me—the one that was supposed to ripen into my precious baby—was dead. I couldn't do it, couldn't wait it out. So, against my usual preference for noninvasive medicine, I opted for the “procedure.”

It was harder than I thought; sadder, darker, utterly empty while at the same time all-encompassing. In a moment of weakness I called my brother—who didn’t know I was pregnant in the first place—and told him everything that had happened. With little to no pause he said, “so now what do you think about abortion?” My body choked in silence. I was stunned. “Um, it’s not really the same thing,” I said quivering as I hurried the conversation along and hung up before he could perceive my grief, shock and regret for having told him.

Amazing, the things people say.

When Calvin first got glasses he was eleven months old though he looked more like a six-month old. Strangers in the grocery store asked me, “how did they (who they?) know he needed glasses?” Nearing the depths of despair over my son who was missing part of his brain, I found it hard to see that it was any of their business. If I stomached a reply beyond, because he can't see shit, it was never any good. Perhaps I should've responded using my dad’s favorite comeback, “what’s it to ya, cabbage head?”

At times like these I think of my dear friend Lidia, my sister mermaid. She had a beautiful daughter when she was twenty-three. The baby was stillborn. In her memoir The Chronology of Water she writes:

I was listing all the horrible things people had said to me since my baby girl died in me the day she was born.

Things like: You know, it’s probably better that she died before you got to know her. Or: Well what you really want in your 20’s is the freedom to party. Or my personal favorite, from my father’s sister, fascist catholic: The saddest part is that she’ll go to hell, isn’t it, since she wasn’t baptized.

I cannot imagine the hole these statements bore into her already hollow shell. Indescribable, torturous, I’m sure.

While catching up recently on Facebook I read a snippet from a new friend whose toddler has Tay-Sachs disease, a terminal metabolic disorder. She wrote:

Man at coffee shop: What's wrong with your baby? Why won't he smile at me?
Me: Maybe he doesn't like you.
= )

A loved one once told me, in a moment of deep frustration and anger at someone's well-meant, though painfully ignorant, comments and advice, “you need to step back from your anger,” and then, “they're just trying to help, their intentions are good.” Later, at hearing this, Michael reminded me, Christy, you know what the road to hell is paved with.” And though I don't believe in hell I say, “I sure do.”

photo by Michael Kolster

The Chronology of Water by Lidia Yuknavitch