wake-up

I wake up in the morning, roll out of bed and stub my toe—the bad one that I jammed last summer that still isn’t quite up to snuff. I stumble to the bathroom and catch the door jam with my shoulder, eyes not quite open yet, brain still in neutral. I look in the mirror, and although I am nearly forty-eight years old, I think I see a pimple on the end of my nose, though I’m not quite sure because I can barely see that close anymore without my reading glasses.

I go get Calvin out of the crib, set him on the changing table and undo his diaper. Like a water fountain, an arch of warm liquid gold hoses me down. He almost never does that. Oh well, there are worse things. I help him get dressed and we head down the stairs as he grabs my nose—right where the pimple is—yanks my hair out and pokes my eyes all with utter lovingness. It’s been too long since I’ve clipped his tiny razor sharp fingernails and I feel it, like when I used to teach swimming lessons to frightened little kids digging their nails into my chest.

Downstairs, I plop Calvin into his high chair and pinch my finger in the tray locking mechanism that doesn’t even work anymore so I have to jam a knife into it to make it stay in place. If I’m lucky, making his meal is uneventful. As I feed him and give him his seizure meds, my legs straddling his chair, he extends a foot into my thigh and pins my tender skin between his rubber-soled slipper and the wooden chair. Then he kicks the bowl of fruit out of my hand, the blueberries erupt and scatter on the ground for Rudy to suction up in mere seconds—that is, if I were to let him.

After breakfast is over I brush Calvin’s teeth. He bites the plastic bristled brush like a pit bull then suddenly lets go and a spray of toothpaste splatters into my face. With stinging, bleary eyes I unbuckle him and take him to the bathroom to play with the shutters. I catch a glimpse of myself in the large round mirror. Good thing I don’t take myself too seriously what with my tangled mess of hair—some gray, some missing—and bloodshot (toothpaste shot) eyes. I haven't had nearly enough coffee, I've got blueberry stains and yogurt all over my robe and a big raspberry on the end of my nose that I can see clearly now that the sun has risen and Calvin has made his very best attempt at waking me up.

possibilities

When you have exhausted all possibilities, remember this—you haven’t.

—Thomas Edison

Thomas Edison

fingerpainting

When I was about Calvin’s age I attended Catholic school. Every day I put on a scratchy wool pleated plaid skirt under which I wore cutoffs so I could climb the monkey bars at recess. Matching suspenders went over a white blouse and under a carmine wool sweater and I wore my hair in a pixie, my mother having put Scotch tape across my bangs in hopes of cutting it straight.

My teachers were mostly austere nuns who met us at the door every morning before class. I learned to read and write, do simple math, enjoyed some art and endured religion. I don’t remember any P.E. A couple of times a year, though, we had some sort of health day. We performed sit-ups and pushups, traced large chalk circles and figure eights on blackboards using both hands and ran races in the parking lot. The smallest girl in our class, Barbara Koreski, always won. She was very thin and compact, like an elf, but she was damn fast. I remember always coming in just behind her.

Once, during art, I watched the teacher-nun pace by my desk as we drew animals, which I was excellent at doing. She passed by me and stood above the girl in front. “That’s not how you draw an elephant,” she nagged, “elephants aren’t purple and pink.” Even at the age of seven I knew the nun was full of it. I felt so bad for the girl whose sad frown scowled down at her page as she scribbled over her creation. I wished I could have said something to the nun, corrected her for her narrow-minded, harsh opinion, for squashing a child’s imagination. But I couldn’t.

Another time in art class we fingerpainted. We each got to choose a color, and because I always wanted to be different, I chose yellow when most of the other kids had chosen red, blue or green. Only one other student, the girl next to me, chose yellow, but I made a very special loop de loop in the upper left hand corner so I'd know that it was mine. We pinned them on the wall to dry. All day during class I gazed admiringly at my happy yellow creation. At the end of the day we were handed back our masterpieces but the nun gave me the wrong one. I immediately protested saying that the other yellow one was mine, that there had been a mistake. “It doesn’t matter,” the nun barked, “they’re both yellow.” She walked away as I begged for my painting with the unique squiggle in the corner. The other little girl did nothing. Perhaps she didn’t know, or care, or maybe she wanted mine. After all, I really felt it was better.

Even now, I cringe when I hear an adult tell a kid that they aren’t drawing, coloring, painting or sculpting right. I can’t imagine what the point is. Someday, if the seizures abate and we can take Calvin off of the drugs, I hope that he can learn to grasp a crayon in his hand and make a mark—his very own—and know that he has created something beautiful, something unique—all by himself—and that I am proud.

vicious storm

Yesterday morning I wrote in the journal “day 10.” Calvin has been doing great lately, a good string of days since his last seizure and little to no manic behavior to speak of, save some hyperactivity at meals once in a while which we chalk up to being excited about eating. But we haven’t been able to eke out much more than nine or ten days between seizures in recent months, even with several drug increases. As a result his balance tends to be precarious and I am convinced it is due to the medication.

All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.

First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.

A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.

The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.

Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.

peanut butter puffins

I spent the first few days of my trip to Seattle staying with my oldest friend Katie, her husband Greg and their seven-year-old boy, Cooper, in their cozy home on the outskirts of the city. I flew solo, Calvin being too difficult to take along on such a journey. We spent hours lounging on their large overstuffed couches with coffees or beers in our grasp, just shooting the shit, joking and catching up on recent news. I sat in front of their huge picture window with a view of the street below—not unlike the bay window in my old San Francisco flat—melting into the scene like wallpaper. All tension in my muscles fell from my bones like Greg’s juicy barbecued pulled pork (pronounced “poke”) stewing in the crockpot.

The morning after the reunion, four hours after crawling into bed with a hoarse voice, I awoke to the little peeps of Cooper and his sleepover pal Cody, chattering in the room next door. Suddenly, Eddie Mercury and Queen boomed “We Will Rock You,” a favorite of Cooper’s that he jams to several times each day. All attempts at falling back to sleep were fruitless so I peeled back the sheets, threw on some sweatpants and, rubbing my eyes, padded upstairs to get some strong coffee. My favorite spot was vacant so I propped myself up against the cushions, my legs curled up underneath me, and warmed my hands around a hot mug.

Slowly the house awakened, the boys finished their Mario Brothers game on the Wi then climbed up onto bar stools to eat breakfast. The two blondies each had a bowl of Peanut Butter Puffins that looked like Captain Crunch on steroids. Still groggy, on my way to get some more coffee I reached into the open box and grabbed a few crunchy morsels. The boys asked me for some more. “Sir,” I said to Cody, whose toothless smile and golden-white hair accentuated his sparkly blue eyes, “would you like me to serve you some more Peanut Butter Puffins?” “Yes, please,” he chirped with a grin. “Tell me when,” I continued. Then to Cooper, who was waiting eagerly, “Gentleman, would you like me to serve you some more Peanut Butter Puffins?” “Yup,” he replied, and watched as the golden pillows tumbled out of the box dinging into his bowl, sweet dimples forming in his chubby cheeks. I asked both of them if they wanted any coffee. They politely declined.

Acting the waitress while serving the two boys at the counter was as much my fantasy as theirs. I just wished Calvin had been sitting between them smiling up at me. I'd pour him a bowl and watch as he'd pop the crunchy delights into his mouth one by one. He’d be beaming from ear to ear, begging me to gobble him up, just like a happy yellow bowlful of Peanut Butter Puffins.

a man and his family

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A Man and His Family by Christy Shake

slice of life

There’s nothing quite like going to the airport to get a slice of life, at least a slice of life for those privileged enough to fly, but a slice nonetheless.

When I fly I always think of three things. I think of the time I was trying to get home for my father’s funeral on an overbooked flight. I had been bumped and a kind man, at seeing my grief, relinquished his seat for me. I think about the time I flew from San Francisco to San Diego with Calvin who wailed the entire time, though I held him in my arms in the bulkhead space rocking him in vain. And I think about what a crazy kid Calvin must seem to others—albeit to me too sometimes—an unusual little bugger, flailing and kicking and squealing, and I wonder what goes through the curious minds of oglers. But when I travel by myself, as I do as I write this, I realize there are a whole lot of unusual buggers out there to enjoy.

Take for instance the kid in line behind me waiting to board, who mustn’t be a day over nineteen, looking like a young Jude Law with what seems a spray-on tan over his flawless skin. He keeps messing with his hair, making sure that that perfect feathered auburn wave crests just so over his impeccable eyebrows. I can’t stop looking at him wondering if it's eye make-up. Whatever it is it looks damn good, at least if you like that sort of thing.

Then, having hurked my luggage into the overhead bin and fastened my seat belt low and tight around my lap, I get to check out the seemingly endless line of passers-by. One young guy goes by with backpack straps partially obscuring the words on his t-shirt that say, “stoner to-do list.” I’m really curious about the list of items that follow but he cruises by too quickly to read them.

Following is a young woman who looks as if she is impersonating “Mommy Dearest,” her white pancake makeup accented by eyebrows that could have been drawn on with a Sharpie and puffy lips shiny and red as a Habanero pepper. Her hair is pulled back tightly, or greased back, I can’t tell. All I can think of is “Morticia,” the name my sister gave me when I dyed my hair black and wore extensions.

Next a Goth couple slink by, both with long dreaded ropes erupting from their scalps, one brunette, the other ebony black tapering into frizzy wicked points. She’s got schoolmarm glasses and a stud in her nose, neither of which I mind. She won’t look at me, though I’m sitting right below her trying to catch her gaze so I can flash her a smile.

Just then I realize, in this kind of crowd, Calvin would fit right in—isn’t unusual at all—in the scheme of things, this oh so incredibly diverse human slice of life.

photo by Michael Kolster

un-welcome

I slept most of the way home on the red-eye, my hood pulled over my eyes. It felt more like a month of Sunday’s since I’d been home instead of less than six days. I was missing my boys ... a lot.

The plane pulled up to the gate while I brushed my hair, tied it back and popped a stick of fruit flavored gum into my fuzzy mouth. With luggage in hand I rolled it up the ramp, down the escalator and out the automatic doors. Across the street in a small parking lot waited Michael and Calvin walking around the car, Calvin banging and mouthing it in his usual style. I whistled like we do when we are looking for each other in the grocery store. Michael looked up and met me with a kiss, then I bent down to give Calvin smooches which seemed to make him laugh, though perhaps he was laughing at something else that was either present or just in his mind.

I loaded Calvin into the car regarding his poor complexion. On the ride home he frantically kicked the driver’s seat, fingered incessantly and stuck his hands on his ears umpteen times while his eyes rolled like marbles in his head. He bit his shoe and leaned over to yank my hair, but he never really looked at me, lost in his own little autistic, retarded, epileptic, medicated world.

The reunion weekend had been spent with friends and their kids and their friends’ kids. The juxtaposition between their walking, talking, looking, asking, answering, running, playing, imagining kids and Calvin couldn’t have been more stark—my child appearing more to me now like a psycho than anything, the recent increase in his seizure medicine seeming to exaggerate his idiosyncrasies.

Michael and I drove home mostly in silence as I sat next to Calvin trying to prevent him from poking his eyes. The weekend's happy echoes and warm hugs of my classmates, friends and family trailed far off in the distance behind me.

strangers on a train

I often think of a story that my brother Scott shared with me years ago. I believe he had read it in a favorite book of his. In the time that has passed since he told me, the details have blurred a bit, but the gist of the story remains vivid in my mind.

As he recounted the tale, he described a scene on a train. In my mind I imagine a commuter train, crowded with men and women wearing smooth dark business suits, some with briefcases in their laps, snoozing or with their noses buried in newspapers, passing time on their way home after a long day’s work.

One businessman notices a fellow whose three little children are raising hell in the train car, racing around causing a ruckus and bothering the other passengers. The father doesn’t seem to notice—or doesn’t seem to care—that his children are acting out and being so disruptive. He’s just sitting and staring out the window at the world whizzing by. On behalf of the other passengers the businessman approaches the father and says something like, “excuse me sir, would you mind getting your kids under control, they’re pestering the other passengers.” The father appears in a daze and doesn’t respond. “I said excuse me, can you please restrain your kids, they—,” and the father slowly looks up at him with a drawn face, his eyes sunken and dark, “oh—I’m so sorry. You see, the kids just lost their mother and we’ve just come from the funeral. They haven't had much sleep and they’re not really themselves. I apologize,” and he went on to gather his kids quietly hushing them to calm down. The train rolls on in silence.

I try to remember this story because at times, more than I’d like, I’m apt to jump to conclusions about another person’s actions or motives. Often I hear friends or strangers passing judgment on someone whose reality they could never truly know. At times I fail, thinking somehow that I know why someone cut me off while driving, gave me a scowl or acted rudely. I remember moments when, in my darkest days of grief during Calvin’s first few years of life, when passing strangers on the street or in the grocery store would tell me that I should smile.

I can never really know what the person standing next to me in an airport, at a crosswalk or at a crowded farmer's market feels, has experienced, or believes. How could I? Best thing I can do, though, is to not make assumptions, keep an open mind, give folks the benefit of the doubt. I suppose it's pretty simple—it's the very same thing I’d want from others.

photo by Michael Kolster

backyard boy

Back in grade school I had crushes on a few different boys. At my 30th high school reunion on Saturday night I was thinking of them. One of them, my girlfriend Marianne reminded me, was Chris, the skinny drummer from the Partridge Family band—the first one—with the dark hair and eyes, big ears and gap between his teeth whose photo appeared on the back of the maroon colored album next to his siblings, Keith, Laurie, Danny and Tracy.

In fourth grade I had a crush on a boy who would soon become a drummer. His name was Jim and he lived on a nearby street. He was skinny too, with freckles and straight brown hair that was never too long. He hung out with some other neighborhood boys, Karl and Tim, the three of them magnets for several of my friends, but mostly for me—a total tomboy—and my friend Monica who I was recruiting to climb trees, race Hot Wheels, squash slugs and forsake the baby dolls she liked to play with.

One afternoon I invited the three boys over to my house to play. We decided to try a game of baseball, so I rummaged through a ragged cardboard box in the garage and fished out handful of soft worn leather mitts, a wooden bat and a dirty ball. We headed to an open part of my back yard between several huge maples, a bank of spruce and a couple of apple and pear trees.

In what seemed like my first up-to-bat, Jim, the boy I had the big crush on (and would continue to have for several years) got up to bat. In my mind he was wearing dark blue jeans, a slim navy, white and red striped shirt, white converse high-tops and a ball cap. He carefully positioned his feet apart, the heavy bat nearly resting on his shoulder. With great concentration I tossed the grapefruit sized ball in a high arch, it descended and met the bat square on with a crack. That menacing ball slammed straight into my face, no time for me to duck for cover. My nose caught the ball—which noses aren’t meant to do—and it started bleeding into my mouth. I cried.

With great disappointment those cute boys decided to hang it up just as it was starting to get fun, even as my beak began to swell as I held a tissue to it. I sadly watched the sneakered trio sulk away, their heads bowed, scuffing their feet in the dry grass.

That boy Jim and I have kept in touch over the years, though now he towers above me, the freckles having long since faded. He’s got two-year-old triplets of his own and he still likes to keep up with Calvin. Saturday night at the reunion we sat together in moulded plastic chairs drinking pints of ice water. We looked fondly at each other, our friendship having achieved a comfortable staying power and the feeling of soft worn jeans, and I blushed at the kind things he had to say about my writing, my cause. He told me that he wanted to become famous so that he could be the spokesperson for epilepsy advocacy, like Michael J. Fox is for Parkinson’s. He said he wanted to be rich and throw a ton of money at epilepsy research and get others to do the same. My heart swelled and my skin tingled with delight at hearing such generosity of spirit. I have to admit that I hope he gets a crack to do just that. And thinking back, It’s not a wonder that I had a crush on that sweet little backyard boy.

detail, photo by Michael Kolster

momisms

I talk with my mom on the phone every few days if I can manage it. She lives in San Diego with my brother Matt and his wife Stacey. She’s eighty-one and has Alzheimer’s and, as far as I can tell, she’s on the slow burn. They say a brain with the disease looks a bit like Swiss cheese. Lately, when speaking with her from three thousand miles away, I am beginning to detect more holes than cheese.

The other day, I asked her something I that always do at some point during each of our conversations, “are you loving life?” In her usual upbeat manner she quips, “I hadn’t thought about it, but it’s a good idea!” I continued, chuckling with her, “Feeling healthy these days?” to which she gave me her favorite response, “yoooobetcha!” I tease her, “you’re doing pretty well for someone who is a hundred and fifty years old.” She laughs in that robust, round way that I know so well. I can imagine her mouth wide and open, her eyes sparkling like they do. “How old am I, really?” I return the question, “How old do you think you are, mom?” She ponders for a moment, “Forty, fifty?” “Nope, you’re eighty-one.” We have this same conversation nearly every time we speak. This time she pipes in, “good deal ... I’m still here!”

Harriette Shake, you’re really somethin’ else. I wish Calvin could know you.

edna and bess

Thursday, on the plane headed to my high school reunion in Seattle I sat next to an elderly couple, Edna and Bob, the both of whom were sporting thick bi-focal glasses, neat slacks and sensible shoes. Edna’s hands reminded me of my mothers, thin skinned and gentle with sculpted arthritic knuckles. Edna and I got to talking and she asked me about family. I told her about Calvin and his various challenges, the fact that he can’t talk, can’t walk by himself, and is still in diapers, even though he is seven. Then I underscored for her his ongoing battle with epilepsy.

She led into a story about a very close friend of hers who lived nearby in their Philadelphia suburb back in the 1950s. Her name was Bess. Bess was married to Bill and they had four boys and a girl all with names starting with the letter B.

Bess and Edna’s boys were in the same third grade class, which is how the two women met. They began frequenting a favorite diner called Robinhood, which served a couple of slices of bacon, two pieces of toast, a pair of eggs and a cup of coffee all for ninety-nine cents. Over their first breakfast Bess said to Edna in a serious tone, “I have something important to tell you that I’m not sure I should. Will you still be my friend if I tell you?” Edna replied, “I don’t know ... lay it on me.” “Well,” Bess whispered, “I have this disease and it’s bad.” Perplexed, Edna asked, “is it leprosy?” “No.” Bess answered. Edna continued, “then I can handle it.” Bess went on with a shrunken posture, “I have epilepsy.” Edna countered in her friendly way, “well, it’s not catching.”

As the conversation progressed Edna asked her friend whether she had grand mal or petit mal seizures, at which Bess’ jaw dropped open in complete astonishment, “you  know this?” Bess explained how usually when telling people, they’d physically back off—pitch a shoulder away—and the friendship would never blossom, leaving Bess mistrustful, ashamed and dejected. But with Edna it was different.

Seated next to me Edna, reaching deep into her memory, told me how they’d find themselves in stitches over some funny thing and they’d laugh until tears streamed down their faces and their jaws ached. “She was my running partner," and then qualifying the statement, "we didn't actually run, but whenever I wanted to go somewhere we’d go together." Then Edna described how at times, in the diner or the car, Bess would stop talking mid sentence, quiver for a minute or so, then pick up her sentence right where she had left off. “Did I just go off into twiggyland?” Edna confirmed and lectured, “did you take your meds?” Bess hadn’t and said she’d take them later. “No you won’t, Edna barked, “you’ll take them now.”

One night Bess’ husband called up. He asked to speak with Edna. He went on to tell her how much it meant to him that she looked after his wife when he was out of town all week long—every week—for work. It eased his mind, he said.

Although Bess moved away a couple of years later the two friends kept in touch over five decades. Bess died knowing that in Edna she had found the truest of friends.

photo by Michael Kolster

berserk

The other night when I was fixing Calvin’s dinner he was completely wacky. If he hadn’t been buckled into his high chair he might have gone flying into the air what with his helicopter arms whirling in circles above his head. The kid was batty, absolutely frigging berserk, and poking the bejeezus out of his eyes. He gets this way more than occasionally now, particularly before a seizure, but this time he was unusually batty.

At dinner he was worse, like a cowboy riding a bucking bronco, that characteristic circular arm motion in the air. I have to loosely secure his other arm with one of his bandannas to do my best to calm him, similar to putting a weighted or compression vest on an autistic child, with whom Calvin has many shared traits. It seems to work, if only a little.

He continued fingering like mad—as bad as I’ve ever seen him—rubbing and snapping his fingertips together with the obsessive-compulsive bent of a raving lunatic. Lately, when he gets like this he’s got what we’ve coined “tight mouth,” his full lips drawn in, almost cinched, into a small circle of tension, his jaw slighted jutted. To be honest, the look on his face, his entire manner, is repulsive to me. I don’t recognize him. It’s like he’s become someone—something—else. What’s more is that I'm not really sure what’s the matter and he can’t tell me, but my hunch is that it's the drugs causing my sweet boy to become a little monster and, if not them, then the seizures or both.

As he was thrashing about his roving hand punched into mine as I reached out to hold it so that I might calm his mad fingering. I heard and felt something pop. He started to laugh, which is why I am pretty sure it hurt—the laughing a recent development, it seems, in response to pain. He laughed himself hysterical, into a frenzy that crecendoed to such a point that I thought he’d go right into a seizure. At one point, after what seemed menacingly like an eternity, I was almost convinced that he wouldn’t stop and I’d end up calling 9-1-1. I’ve never seen him quite so freakish and thus, I became a jittery bundle of nerves.

Eventually his evening dose of drugs beat down whatever chaos was wreaking havoc in his brain. But the night was still young and I waited quietly, on edge, for the dreaded next seizure to pounce.

do for others

What you do for yourself alone dies with you. What you do for others and the world remains immortal.

– Albert Pike 

counting seizures counting drugs

Today is day nine ... nine days since Calvin’s last observed seizure. I can remember times as recent as January when I counted up to seventeen, or years ago when he hit twenty-seven, or even forty-three. I wonder if we’ll ever get back to those days again. I dream of a time when we can stop counting all together.

Last night Calvin was pretty restless, sitting up in his crib several times and falling backwards, his feet pinned under him as he slept on top of the comforter. Each time I went in to reposition him, cover him and offer him water.

At three-thirty I awoke to a tiny squeak not unlike a puppy’s whimper, but I knew it was Calvin. I whipped off the sheets and darted into his room, flicked on the light to find him writhing in his crib, his covers partway off. Michael and I leaned down into the crib and stroked his hair, his peachy skin that shuddered and convulsed beneath our loving touch. We waited and watched—nothing else we could do. The third and final phase of his seizure, when he trembles and jerks, was longer than usual. And when it was all over we shared Calvin’s weight, Michael at his shoulders while I took his hips, levitating him, and then placed him gently into our bed.

For at least half an hour Calvin suffered aftershocks, little shivers and twitches punctuated by the occasional rigid extension of his legs. His belly was distended with gas so I traced smooth circles clockwise on his soft abdomen to try and tease it out. Finally he drifted off to sleep, my hand on his warm chest feeling its lovely rise and fall.

As I slept his fits persisted in my dream. Not long after the first seizure Calvin started into a second one. This time he coughed up blood and cried. In the dream somehow I couldn’t get to him—felt the same kind of sick helplessness that is our reality. No way to save my child from these relentless attacks. No way to kiss it and make it all better. No way of knowing what my boy might have been—might be doing—if it weren’t for these wretched seizures repeatedly scalding my sweet one’s brain.

This morning at breakfast I increased one of Calvin’s seizure meds ... again. He’s pretty much maxed this one out, like so many of the others we’ve tried that have failed him. I’m not really sure how his little developing brain navigates at all what with so many different drugs continuing to soak into it like chloroform in a sponge. I fear we will have to try yet another drug—the ninth one—in the not-too-distant future. The current ones make him hyper. Will the others send him into a lethargic stupor again? And as long as he must take these drugs he’s not really my kid. He becomes some sci-fi horror flick maniac or zombie under the spell of these volatile toxic potions that morph this kid—who used to be mine—into someone who, at times, I’m not certain I can ever really know, but nevertheless love him with every cell of my soft animal body.

photo by Michael Kolster

slingshot

A few weeks ago, while Michael was pruning the part of the burning bush that I can’t reach—not even with a ladder—he noticed a bird’s nest in its tangled outer branches, a cardinal’s nest. The next day while gardening I inconspicuously checked it out. The first time I saw a long feathered tail. Another time she spied me with her beady black eye fixed and motionless on mine, her orange beak gleaming like a safety cone.

We’ve spotted two pairs of cardinals in the yard this year. At dawn on these summer days, between four and four-thirty, we wake to the male cardinals’ clear sliding trill piercing the morning stillness through our wide-open windows. In the evening, when Michael and I eat dinner out in the screen porch we hear the female’s short, sharp chirp before she emerges from the bush and flutters off into the surrounding trees to return later, zooming in making a low arch back into the bush.

On a few of my morning strolls through the dewy garden I’ve seen a fat orange tabby cat lurking at the base of trees. I know it’s out there when I hear the crows work into a frenzy. I hiss it off clapping and wishing I had a slingshot in my back pocket. Its menacing presence has had me worried about the nest.

The other day, after two days of drenching rain, I peeked into the bush only to find the delicate nest capsized, hanging askew and slightly unraveled. I searched the ground beneath it and found a tiny blueish-white egg, no bigger than a grape, adorned with blackish-blue speckles. My brow cinched up into a sorry scowl. As gently as I could I picked up the egg, which was intact, and I held it to my cheek. It was cold. The birds were gone.

Regarding the fragile egg in my cupped palm I thought about my little Calvin. How has he survived—indeed how have we all survived—the nasty curve ball that has been hurled our way sending us into a spin toppling and turning our lives upside-down? Is it about strength? Tenacity? Or is it simply the luck of the draw. Perhaps some combination of all three. In any case I’d like to think we’ve beaten the odds, at least so far.

I already miss those cardinals. I wonder where they’ve gone. I hope they come back next year and have some better luck, beat the odds. But maybe I ought to go out and get me a slingshot.

stairway to heaven

A few days ago Calvin went up the stairs ... all by himself. As I stayed closely behind him in case he fell backwards, he crawled up the first step then stood and grabbed the railing. He stepped up twice to the landing and safely turned the corner ready to head up the flight of eleven stairs to the second floor. Again he crawled up one stair then stood and took two more holding onto the banister. Then he crawled a few more, stepped a couple more then crept the rest of the way to the top. I didn’t lay a hand on him.

We’ve been working on this for months if not years. Words cannot adequately express how incredibly proud I am of his accomplishment. He’s learning new things, faster than ever, and though that isn’t saying much, it still feels good—really, really good. I think it’s because he’s having slightly fewer seizures. I can only begin to imagine what his development might be like if he could get rid of the seizures and stop taking the drugs. I don’t believe in god, at least not in the way the good books tell it, but it'd feel like my own little heaven here on earth if he were free of the seizures and the side effects.

sobering SUDEP

Most people have never heard of SUDEP. It stands for sudden unexplained death in epilepsy. It’s real and it’s scary, particularly for people like us.

Although not enough is known about why SUDEP occurs, it seems clear that there are a number of contributing factors that would predispose one to the risk, almost all of which, most soberingly, apply to our little boy Calvin.

Calvin is at greater risk of succumbing to SUDEP because he has uncontrolled tonic-clonic (grand mal) seizures. His risk is ten times higher than the risk for those with epilepsy who have only one to two tonic-clonic seizures annually. Calvin has close to fifty each year and, in the past, has had more than double that. Additionally, Calvin takes a combined regimen of antiepileptic drugs (AEDs)—called polytherapy—which also raises his risk. Moreover, one of his drugs’ many side effects is respiratory suppression, a factor that itself increases the risk of SUDEP. Early onset of epilepsy (before the age of 16) is another contributing factor. Calvin started having seizures by the time he was two years old. Having seizures during sleep increases the SUDEP risk and, historically, most of Calvin’s seizures have been nocturnal. Lastly, males are identified to be more prone to SUDEP when compared with females.

The nature of Calvin's intractable epilepsy requires that Michael and I walk around wearing a baby monitor tied to a ribbon around our heads, like a headband, anytime Calvin is sleeping. This way we can hear every little sigh and hiccup—or tonic-clonic seizure—that he might have. Although Calvin’s room is attached to ours we’ve got that damn monitor on full blast hissing white noise all night long from the nightstand near my head. I wake often, at times more than once an hour, if I hear him make any unusual sounds or if I suspect a looming seizure. I creep to his cribside and shine the flashlight on his lips to ensure that they are pink. Nights when he sleeps soundly and mornings when he sleeps in late I fear most of all. I dread going to his bedside on quiet mornings afraid I’ll find him dead. I’ve known of parents who have lived this most wretched nightmare of all: waking to finding their child lifeless. Gone.

We could eradicate SUDEP if we could find a cure for epilepsy. The only way we are going to find a cure for epilepsy is if we increase society’s awareness of the disorder and expose it’s grave impact on the millions of families and individuals who suffer from it. We must unmask the obscure reality that epilepsy research is grossly underfunded, especially when compared with other neurological disorders that impact far fewer people and that don’t affect children.

Please offer a few seconds of your time to share Calvin’s story. Help bring us one step closer to a cure for epilepsy. It’s not hard, just do it one story at a time. It's as easy as pushing a button.

photo by Michael Kolster

can’t hurt

Recently I ran into an old acquaintance while shopping for a little inflatable swimming pool for Calvin.

The first time I met her we were on opposite sides of the checkout counter at the grocery store. She was tall, probably in her sixties, with an unruly tumble of grayish hair that had a kind of pinkish-purple tint. She wore glasses—if I remember correctly—with a chain to keep them around her neck when she wasn’t using them. She sported a big wonderful gap between two front teeth that I was very fond of. I have always been a sucker for gaps, overbites and snaggletooths a la Sam Shephard, Lauren Hutton and Michael Kolster.

After some weeks she began recognizing Calvin and me. I imagine she’d hear us coming aisles away, as Calvin, sitting in the front of the cart, usually hollered for the entire shopping experience no matter what I did to hush him. Her curiosity was peaked by my sweet, extraordinary little boy with his mass of auburn hair and large blue eyes roaming wildly from behind his own glasses, (come to think of it, Calvin has a gap between his teeth, too.) Her questions about him were refreshingly candid, like the child that asked me when Calvin was screaming in the doctor’s office, “what’s his problem?” Her queries, though, were always kind, respectful and of genuine concern. I adored her quirky nature and asked her about her own family and, with a new set of shiny silver braces on her teeth, she had spoken of a son in Japan who was coming home soon to be married.

Standing there in the aisle the other day we hugged, having not seen each other in a few years since she had left her job at the grocer. She proudly flashed me a photograph of her new grandbaby secured behind a flat, plastic-covered leather frame on a heavy jangling keychain. Her son, now a young father, was still living in Japan. She went on to mention that she had been widowed for some twenty-plus years—something I hadn’t known—her husband having died in his forties. It seemed premature death ran in his side of the family. As she spoke I eyed her silver hair, her bright eyes, her perfectly straight teeth. Our conversation turned to life and how much the Japanese and American work ethics seem to match—too much work and far too little leisure time to enjoy life and its offerings. “After my husband died I took seven years off to raise my children,” she said, “best thing I ever did.”

In a lazy accent that I could never completely identify, she went on to tell me that her son, reminded of the young age at which his father and uncles had died, had recently asked her, “mom, should I plan on dying by the time I’m thirty?” “Can’t hurt,” she said, “can’t hurt.”

saturday stroll

Last Saturday was a lazy day, warm and sunny. In the late afternoon when a breeze kicked in I gathered Calvin and Rudy for a walk to the shady college campus nearby.

I scuffed along at a snail’s pace in loose leather flip-flops and a tank top with my cargos rolled up, under a straw hat tied at my chin. I strolled leisurely like one does over steaming hot asphalt on a sultry day in New Orleans. Welcome shade graced us from a grove of white pines, the sun filtering through thick, heavy branches. Calvin sat upright in the jogger and played happily with his bare feet, giggling to himself. He’s still such a baby, I thought fondly, leaning down to smother him with kisses every few yards, to which he squealed with delight.

I had left Calvin's glasses at home so I didn’t have to worry about him ripping them off sideways and pitching them into the brush. Even so, on campus he eyed a bank of creamy hydrangeas and reached out to them. I moved closer so he could grab the powdery globes. “See the pretty white flowers, Calvin? Can you touch them?” It was nice to see him explore the puffs with his hands for a good long time. “Good job, sweetie,” then he tore off a bloom and tried to stick it in his mouth. I remembered back to when he was an infant and reached out to nothing, not even the brightest toys held within his feeble reach, his tiny arms hanging slack like noodles at his sides, his brain not knowing what to do or how.

As we reached the main quad we passed a woman and her son. The little blond boy looked to be about Calvin’s age—seven, perhaps younger—and she was leaning over helping him with his bicycle. We strolled on. Further ahead a young man sat alone on a near hillside abutting some brick dormitories. As we strode on past we smiled at each other and I called back for Rudy to catch up.

At the far end of campus we started to loop back following our original route. Perched on the same grassy slope where the man had been was the woman I had seen earlier with her boy. I realized that they were a family. She was crouching on her feet, perched like a gargoyle, arms wrapped around her knees, her hands tightly holding her elbows looking out into the quad. Severe bangs shadowed her narrow dark eyes and when she looked at me—at us—I flashed a genuine smile. The smile was returned with a hard stare. My mind raced wondering what she was thinking. Was my casual look so distasteful? Might she have been repulsed by my skinny knobby-kneed barefoot pigeon-toed boy poking both of his eyes and spouting strange guttural, albeit happy, sounds? Perhaps she was completely unaware of our crossing before her, caught in some sort of furrowed-brow vexed trance. I couldn’t be sure.

When I looked away from her the boy and his dad were rounding the near corner of a paved path. The man was awkwardly holding the handlebars supporting the bike, reaching one arm across his son’s chest to grasp the far handle. The boy, with his mother’s same stormy eyes, looked serious, weary, maybe even frightened as his father, now stoic, pushed him along. No words of encouragement were spoken, in fact no words were uttered at all as they rolled past the mother to complete one more lap. None of them seemed to be having any fun.

I continued on and when we reached the intersection near our home Calvin, as he always does, became animated. Since he was an infant he has somehow recognized that exact section of street, even without his glasses, knowing he is close to home. “We’re almost home,” I say to him. “Are you excited, sweetie?” and I lean down to kiss him knowing full well that he is.

photo by Michael Kolster

walking and running

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

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

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

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

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

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

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

photo by Michael Kolster

bummers big and small

My dog giving me a flat tire in my flip-flops. Out of milk or coffee. Voracious Japanese beetles. Greed. Mildewy laundry. Poop in the bathtub. Epilepsy and all that goes with it. Talkers at the movies. Broken off corks. "Urgent" prerecorded calls from credit card companies. Burnt toast. Gluttony. Rude behavior (I should know.) Electronics at the dinner table. Liars. Calvin's seizures. Fast food. Well done meat. Self-righteousness. People writing checks in the express lane. Pedestrians crossing without looking. Ignorance. Did I say electronics at the dinner table? Little yappy dogs I don't know. When Calvin is hurting and we don't know why. Selfishness. Know-it-alls. Mistakenly "using" a poison oak leaf. Drivers who won't let you merge. Bigotry. Most unsolicited advice. Narrow-mindedness. Television. Complainers. ; )

photo by Michael Kolster

little big boy

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

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

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

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

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

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

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

photo by Michael Kolster

paradox

In epilepsy there lives a paradox that is both self-serving and counterproductive.

For children, men and women who have epilepsy, particularly those who otherwise enjoy good health and typical lives, there is an important effort to demystify and destigmatize the disorder. These people who suffer from epilepsy want to be seen as “same” rather than “other.” They do not want to be shunned, outcast, shamed or discriminated against. It is their goal, and rightfully so, to live full lives, to be included in society, to enjoy each day without feeling marginalized or avoided like the plague as has historically been the case.

In recent years these efforts, by people for people with epilepsy, have enjoyed some success, including the emergence of characters in movies with epilepsy appearing just as they are—normal folks, albeit some of whom wear helmets. People with epilepsy are speaking out and letting others know they are not to be feared, but rather embraced, just like anyone else.

On the flip side, this "normalization" of epilepsy and its impact on lives might risk impeding the progress of epilepsy research and advocacy. If the myth that epilepsy is a benign condition where you take a pill and everything is okay—normal—persists, we might have a harder time garnering the appropriate funding to find a cure.

So while some folks with epilepsy are enjoying seizure freedom with the use of devices, surgery and/or drugs, (don’t forget the drugs always come with distasteful side effects,) and are able to go about their daily lives, I am making a concerted effort to tell people about epilepsy’s horrors: the uncontrolled seizures, the repeated hospitalizations, the powerful mind-numbing drugs, the painful blood draws, the abhorrent drug side effects, the consequential developmental delay, the risk of sudden death in epilepsy (SUDEP) and death from related accidents such as drowning, the financial burden on society and families, the emotional toll on families, the shameful lack of pharmaceutical, public and private funding for better treatments and a cure, the pitiable lack of a prominent celebrity voice advocating for epilepsy education and research.

To be honest, epilepsy, particularly uncontrolled, is a disastrous, tragic condition not to be underestimated. It can strike anyone at any moment. There is no preventative lifestyle or diet. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. It just means doing one or two simple things.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time. It's as easy as pushing a button.

day at the lake

It has been a quiet summer in Maine spent mostly monotonously hanging around the house with Calvin, though we've managed barbecuing, gardening, a walk or two on the beach, a couple of boat outings, a handful of ice cream cones and one rock concert. But the other day our friends invited us up to their lakeside camp north of here about an hour, to enjoy a slightly different pace and scene. When the nurse rolled up on her Harley, we kissed Calvin goodbye, told him that we loved him and set out on our day's journey.

We arrived via the highway, followed a two-lane road turning onto a gravely pot-holed lane that meandered through trees and brush to a dead end. Rudy excitedly jumped out of the car and we all thumped down a pine needle carpeted hillside past a string of small red wooden cottages overlooking the lake. At the water's edge, the main lodge, another modest red cabin that in its history likely served as the mess hall for a boys’ summer camp, we were greeted by our lovely hosts and a veritable litter of black labs.

After meeting the large extended family I visited the camp cook who was back in the kitchen working her magic. With her hair bundled up and an apron tied around her waist she rolled clumps of shortbread cookie dough into crushed almonds and pine nuts, placing each ball carefully on a baking sheet then flattening them with the back of a spoon. She had just finished making a pot of saffron-colored chicken and rice soup that smelled deliciously of sauteed onions and butter. I found it hard to pry myself away from such intoxicating aromas.

Our first order of business, though, was taking a walk out to a point where we waded briefly in clear water and threw a stick or two for the dogs. From there we followed a narrow rambling path through a thicket of blueberry shrubs leading to a lagoon encrusted with lily pads. The two of us, plus Michael’s childhood friend, his wife, two daughters, mother-in-law and three labs, ate clusters of small blackish berries as we strolled lazily in line chattering and snacking as we went. I felt just like some character in a child's picture book.

Back at the camp, the fresh berries having whet our appetites, we slurped spoonfuls of warm golden soup and helped ourselves to a buffet of breads, meats, cheeses, spreads and salad. A wide covered porch invited us to gather and linger around a small table in stiff wooden chairs drinking sticky sweet lemonade out of flimsy turquoise colored paper cups. The lake, only a few yards from our feet, reflected a cloud-strewn sky in its mesmerizing deep lapis face. Gazing off at the idyllic scene my thoughts drifted to a girl who last summer, at a lake not far from our home, had drown in shallow water while having a seizure. I imagined her family gatherings this summer—and infinite seasons to follow—that would never again be the same.

Before we knew it we had to pack up and turn right around. Still wearing my wet bikini after a couple of fatiguing water ski runs, relaxed and tired, we were escorted uphill by Michael's friend and his youngest, just eleven. Earlier, when bringing the boat in, the girl had asked about Calvin, wanted to know how his seizures were, how many he was having compared to before and if they were bad. I explained that he was having about the same number of bad ones but fewer of the others. "He's walking better but still can't talk," I added. "Will he ever talk?" she asked. I told her we didn't know, but as long as he continued having seizures and having to take drugs for them he likely wouldn't. She made a little whimper-like sound then was silent. Walking to the car she said sweetly "I wish I could see him again," and remarked about how the last time she did "he only came up to here," touching her graceful hand lightly to her hip.

On the drive home, after many long hugs goodbye, I imagined I was still at the lake. I'd be walking arm in arm with the girls, wading in the water, brushing the tangles out of their wavy blond hair talking of random things—of life—while watching the big sky slowly darken to black, chalk full of glimmering stars and counting the fallen ones whose tails trail off then disappear into nothing. Perhaps we'd make s'mores cuddled around a fire sitting on stumps with the chill at our backs—all things I yearn to do with my own son, but can't, I thought.

Michael tapped the brakes and I snapped back into reality. Remarkable kids, I thought. So sweet and so kind. "They're such nice girls," I turned to Michael whose hand had reached out to squeeze mine, "such a nice family. I'm so glad we got to come up."

zappa plays zappa

The other night Michael and I got a rare opportunity to see some live music down in Portland (Maine.)

First, we grabbed a bit of mediocre Mexican food and downed a couple of beers then headed up a rugged brick sidewalk to the old State Theatre. As we were entering, we passed by a middle-aged man with his son. The boy must have been eight or nine and was grasping a floppy orange and black stuffed tiger. There were a few other fans there with their kids to see Zappa Plays Zappa, an eight-piece band lead by the genius composer’s son Dweezil Zappa.

The scene was somewhat reminiscent of a late Grateful Dead concert, the warm house packed with salt and pepper-haired men—and some women—in t-shirts and Levi’s who’d become thick in the middle over the years. I sat next to a man and his gangly teen aged son whose smooth blond hair boasted a perfect wave of sky blue at his forehead. The boy munched on popcorn from a greasy paper bag while his dad drank a beer.

When the lights went down the crowd cheered wildly as a slim frizzy-haired fortyish man in skinny jeans, sneakers and a purple v-neck t-shirt entered the stage humbly following his fellow band-members. For two solid hours the musicians rocked the house with zany lyrics, full, round, sometimes beautifully dissonant voices, brilliant orchestral arrangements including horns, woodwinds, keyboards, guitars, a bass and two superb percussionists making utter love to a cluster of drums, snares, cymbals and a marimba.

It was difficult to stay still in my narrow seat. The music moved me. I kept looking over my shoulder, fondly, at a young barefoot couple dancing with reckless abandon on the cool cement floor. The happy pair, both with curly long hair and fair, childlike faces, took me back to my years living in the Haight-Ashbury district of San Francisco. I wished I could have joined them. They were the only ones dancing amongst a sea of mostly motionless white folk.

But by the time the last song ended, the crowd was on its feet whistling, applauding and screaming for more. My face hurt from smiling the entire show. The band happily returned for an encore and took the house down as the audience finally danced in their seats.

Within the dark sultry scene of giddy fans, colored lights and spectacular music flowing into my brain I still thought of Calvin. At one point the percussionists played mind-blowing solos on the drums and marimba. I wished I had Calvin on my lap or seated next to me, as I dreamed of a day when he might have a taste of the wondrous thing called live music—my cure-all for any kind of blues.

the fighter

When Calvin was born he was a little munchkin, not quite five pounds. He was well on his way to being a seven-pounder but he made his way into the world, harshly, six weeks too early. Two weeks prior to that we had learned he was missing a significant portion of the white matter in his brain so we couldn’t risk a vaginal birth, a stress his tiny brain and body might not have been able to bear. Instead he emerged through an incision in my belly, barely able to breath. I didn’t see him until he was twenty-one hours old.

For a period of time within those first several hours Calvin was put on a respirator, a thin tube having been threaded down his delicate trachea. The docs gave him a surfactant to help clear his lungs of fluid. By the time I saw him he was hooked up to a cumbersome continuous positive airway pressure or C-PAP. He was diminutive, a skinny little pup with translucent skin, floppy ears, no lashes and nipples no bigger than a healthy grain of sand.

It was clear that Calvin didn’t like the C-PAP at all, and why would he? He had to wear a knit cap to which each side was velcroed lengths of blue accordion tubing just above his ears. Those tubes carried oxygen and lead to a two-pronged plastic nasal cannula which uncomfortably spread his nostrils allowing the gas to enter his lungs keeping his blood saturated with oxygen.

Just one day old and at least six weeks early (due dates can be off by as much as two weeks) that kid was batting the C-PAP with as much vigor as he could muster, and he managed to yank it out several times. Right then I knew my kid was a fighter. He’s never proved me wrong.

photo by Michael Kolster

an inconvenient poop

Last night reminded me that there are few things less convenient than a big poop in the bathtub.

photo by Michael Kolster

river ride

A few nights ago Michael and I took the boat out for our first evening cruise while Calvin’s nurse stayed home to bathe him, feed him, give him his seizure meds and put him to bed.

We arrived at the launch around five. At my asking, two sweaty men, one shirtless with an enormous stomach folding over his belly, proudly and kindly showed me the blood worms they had dug up. The worms, long grayish ribbons with thin red stripes writhed, almost beautifully, in translucent white buckets.

Michael unloaded the boat and I stayed with it while he parked the car and trailer. It was low tide. We could smell it on the wind. The sun beat down on me as I slouched lazily on the warm dock and closed my eyes which, through their lids, were bathed in a glowing crackled blood orange red. The rays seemed to flicker through the leaves, but when I opened my eyes I saw the sun blazing naked in the big sky. Mere gusts of wind beating my lids had caused the light to tremble, something I had never noticed before.

We made our way without a wake down the New Meadows river past the house our friends had built not long before they moved away. I remembered the fun cookouts we used to have there, their two furry little dogs chasing Rudy around, the Mongo-sized margarita's Kellie made, along with the glistening raw shrimp appetizer she mistakenly served. I chuckled to myself reminiscing about Nigel's crazy penny poker, the laughter that echoed in their kitchen and no doubt carried across the water. Then I thought of the seizure Calvin had on their cushioned window seat, followed by the fear, the ambulance, our friends arriving later at the emergency room with a platter full of barbecue to sustain us.

Once, years ago, I walked barefoot down the steep grassy embankment to their dock, climbed into the white marshmallowy seats of their boat. We trolled on the river to a lobster shack forty-five minutes down the coast. We cracked jokes and beers, uncorked wine and drank the cold beverages from plastic cups.

"I miss those guys," I said to Michael. "Me too." This time we were making the same trip, but alone—Calvin being difficult to bring on the boat. At a generous clip the wind whipped our faces. We startled a cormorant, which flew into our path, so black and dripping it appeared soaked in oil. A few large ospreys stretched their wings in the sky above an endless bank of jade pines and oaks sprouting from craggy layers of black and gray rock. The coast was dotted with homes of all types. Small rustic cedar cabins with peeling white trim and rickety screen porches shared the bluff with quaint painted cottages and stately— sometimes absurd—fawn and khaki lodges made mostly of windows, peeking through the tops of the trees.

After a long ride against wind and current, dodging hundreds of multicolored lobster buoys, and before entering a powerful, heavy open ocean, Michael spotted our destination, motored our modest lozenge-shaped boat between lobster boats up alongside the dock and tied it off. At the snack bar window we ordered a lobster roll, pint of fresh hot battered clams and sweet potato fries. In front of us a couple with a curly-haired toddler in a little red life vest had ordered a scoop of blueberry ice cream on a cone. I stood in amazement at the words streaming out of this minuscule child's mouth as he climbed all over a green plastic chair like a monkey.

We sat at the end of the pier on iron chairs, the sun hanging low in the sky but warming us in our seats. Michael cracked a beer from our cooler, and I a small bottle of Prosecco. We toasted a successful first half of our trip while looking over the waves of cerulean water missing Calvin and Rudy, but smiling nonetheless.

photo by Michael Kolster

lucky

This morning, after I sent Calvin off to school on the short bus, I finished my bran flakes, folded a bit of laundry, put some dirty dishes into the dishwasher and brushed my teeth. I chose the orange pair of flip-flops, ran a brush through my hair, tied it back, wound a beaded bracelet around my wrist then grabbed my keys and wallet.  As I was shutting the French doors on my way out I happened to glance down at the coffee table. On it was this morning’s copy of the New York Times. The cover photo gave me great pause.

The emaciated child in the photo is haunting. I read the first few lines to learn that the child is just one of over five hundred thousand children starving in Somalia because of insurgents blocking their escape from a famine. I imagined this suffering child as my own child, as Calvin. The thought nearly brought me to my knees in grief.

I read no further as my mind soberly turned to the image of our comfortable home, the attractive addition we just finished on our kitchen, the lush trees, shrubs and flowers surrounding our house, which at times, when they are thirsty, I drench in water. I think of the list of groceries that I make every few days knowing reliably each item will be crossed off as I stroll down air-conditioned aisles plucking enormous fruits and pristine waxed vegetables off of the shelves.

And Calvin, little Calvin, who cannot talk, cannot walk by himself, remains in diapers and must cope with the scourge of epilepsy and a battery of potent drugs, is safe and fed, warm, dry and clothed, enjoys medical care, nurses and teachers. He isn’t thirsty or in want of shelter. He isn’t at risk of suffering and dying from cholera, malaria, dysentery or starvation. He—we—are so goddamn lucky it isn’t funny. Are we so deserving? I don't think so.

Driving home from the grocer, with a hatch full of bags boasting a myriad of fresh fruits, vegetables, meats, cheeses of the world, dog biscuits and pasteurized milk, I cried and cried tears of sorrow for the children and tears of shame for the times I've complained about hunger, complained about costs, complained about traffic, complained about losing my wallet, complained about breaking a glass, complained about the weather.

And entering the cool house to unload my spoils I glanced in the front hall mirror at my clean face. I studied my features—both inside and out—that I share with the whole of humanity. What makes me so special? That's just it—I'm not.

Tyler Hicks/The New York Times

summer camp

Often, I am reminded of my years coaching swimming to scores of spirited youths when I myself was still just a teenager. I have always liked kids, the way some of them seem wise beyond their years—old souls who I could sit and visit with for hours—while others bring huge grins to my face always acting the class clown, the goof-off, the prankster. Some I coached were very shy and intellectual, warming up to me slowly, while the next one in line was a rowdy tag along just like I had been. Once in a while the same family boasted all of these personalities!

The other day when I was walking Rudy, our old chocolate lab, we passed by the college field house, an impressive building with a high ceiling sheltering an indoor red rubber track. The door on the corner of the structure was open spilling out school-aged kids in neon colored t-shirts, shorts and sneakers. We had happened upon summer day camp. I decided to take a peek.

With my shoulder resting on the door jam, I poked my head inside to see hundreds of scampering rascals, some playing a game that one friendly freckle-faced girl told me was called doctor dodge ball, where the children hurl rubber balls hoping to tag one another out. The scene looked like one of those air-mix lottery machines, colorful balls bouncing and flying each and every direction. It was utter, beautiful, chaos.

On a near corner of the track bold white lane numbers seemed to corral a group of tweenagers who had spread themselves out with pens, pencils and crayons quietly drawing pictures on thick pads of paper, perhaps writing poetry. One of them was sitting with the pad in his lap pensively gazing upwards, eraser tip supporting a happy chin. At the fringe of the gathering lay a tie-dye girl propped up on sharp elbows, her bare legs crossed at the ankles sporting strappy leather sandals, her hair wound up into cute brunette sprays tied with ribbon. She must have been daydreaming.

As I stood at the mouth of the exit another group of littler kids was lining up behind a silver-haired woman to get their hands on vibrant lengths of fuzzy yarn to finger-knit into whatever their hearts desired. Every size, shape and color of kid flocked around me to chat. My heart swelled.

Several children swarmed around Rudy wanting to pet him. One, with my approval, gave him a piece of his banana. Others asked how old he was, what his name was, if he’d bite and if he was a hunter. “He likes to hunt squirrels, and he’ll hunt for your lunch,” I said. A tall teen aged girl with a hunk of metal awkwardly bracing her wide smile excitedly told me of another nice dog she had met recently, one with an orange-brown spot around one eye and a nubby tail. I complimented a skinny little girl’s cool canvas sneakers that were adorned with inky blue peace signs, hearts and stars.

And as I called Rudy to leave a couple of wiry dark-haired young brothers, Edwin and Nathan, sweetly asked me if I had a child at the camp. Holding back tears I said that no, my son was not participating, but that I hoped one day he could. I told the older one that my son had epilepsy and cerebral palsy. "Have you heard of those?" I asked. He nodded soberly. I knew there was some tacit understanding of my sorrowful situation between us, he being a boy wise beyond his years with an old soul, who, in another life, I might have sat with and talked for hours.