4.30.2011

4.29.2011

silver hare

My friend and kin Jon with his young son Jesse, Calvin’s fourth cousin, found a dying hare by the side of a New Mexican road where they now live. It had probably been hit by a car and was breathing when they peddled their bicycles up to it. The two laid it in an adjacent field, which I imagined flat and expansive, grasses glowing golden under a vast cloudless western sky. It died there, its silver body gracefully sinking into the terracotta earth. He sent me a photo. I haven’t been able to get the image out of my mind. Somehow it reminded me of Calvin. So beautiful. So defenseless.

In the photo the hare, willowy with a soft fair coat, lay in Jon’s careful hands, its large apple-sized head resting gently, cradled in a slightly soiled rag. I think it was still alive.

When Calvin was born I was swimming deep under waves of anesthesia, my platelet count too low—having given some for Calvin—to risk an epidural bleed. The surgeon, though I pleaded, wouldn’t allow Michael in the operating room since I’d be unconscious, so neither of us witnessed the birth of our only child, nor did I experience my newborn babe lying warmly on my breast.

In the dim hospital room, where I had left Michael as they rolled me down the hall to emergency surgery, they brought him his newborn son. He’s recounted the story to me several times, but since I wasn’t there I can only imagine by piecing together his details like a collage in my mind. Calvin was tiny and swaddled in cloth, not quite five pounds, with a little knit cap swallowing his head. He surely was as supple and lithe as that hare, though much, much smaller. The doctor handed him to Michael just minutes after his birth, so fragile, and—like that hare—teetering on the verge between life and death. As quickly as Calvin appeared he vanished, whisked away to a world of respirators, monitors, leads, alarms, needles and tubes, dangling in a vulnerable limbo, delicately cradled in a caring stranger’s hands.

photo by Anna Hepler

4.28.2011

grandma’s album

Shortly after my grandmother died at the age of ninety-five—just two years before her son died—my dad tugged a large trunk out of a downstairs closet. He told me to go through the things she had left in it and choose whatever I’d like to have.

The trunk was a dark wood lined with thin brittle tea-stained paper, bubbling and separating from its edges. In it were several empty wooden frames, a few purses, a rosary, handkerchiefs, gloves, a bible and other knickknacks you’d expect to find in a musty old trunk owned by a woman born in 1899.

I chose one of the rosaries, not because I was raised Catholic—I’m not religious at all—but because of its beauty and the knowledge that my grandmother’s supple, thin-skinned fingers ran over its beads. Then a red velvet booklet caught my eye, slightly smaller than a half sheet of paper, about an inch thick with rounded corners. A decorative font embossed diagonally across the front reads “ALBUM” surrounded by what were velvet curlicues and sprinkles, though long worn thin and threadbare from being handled. An old piece of shiny amber tape secures a tear on the inside page where my grandma wrote her name in the familiar cursive I remember from her correspondences to me. The opposing page is prettily adorned with three delicate budding tea roses.

Most of the book’s pages are empty, though the beginning is filled with various quotes, all written in my grandmothers hand. The first is about the affects of the caustic tone of voice and is attributed simply to “mother”. Following are quotes from Emerson, Longfellow, Buddha, Confucius, Mohammed, Plato, Goethe and President John F. Kennedy. Brotherhood, kindness, love, self-discipline and hope are common themes. One of my favorites reads:

“If I keep a green bough in my heart, the singing bird will come.” - Old Chinese saying

I’ve read these quotes many times, lightly touching the yellowed paper and faded black ink, always remembering the common thread of biology that runs from her through my father then to me. I wish I had known her. I really didn’t. She lived so far away. I only know she had Spanish blood, bore two sons, was well read though not college educated, played the guitar on the radio and lived in San Francisco, as did I. But through the selection of passages she has transcribed I realize we are so alike, and that feels wonderful. I have continued to write favorite poems and quotes in the album. I only wish Calvin could, one day, read them all and add his own. Something else to dream about.
My dad and Grandma with one of my brothers

4.27.2011

good husband

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

He plays vinyl records—loud. He takes me to dinner. He's my best friend. He has a good sense of humor. He gives me compliments. He's very forgiving. He laughs at my jokes. He takes incredible photographs. He views the world in ever changing ways.

He works harder than anyone I know. He gives Calvin tons of hugs and tickles and kisses. He has an amazing vocabulary. He teaches me plenty. He recognizes his limitations. He loves his parents. He loses at cribbage. He rides a vintage motorcycle in a cool brown distressed leather jacket. He fixes anything and everything. He is humble.

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

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

4.26.2011

sunday nap

On Sunday, Calvin was having such a good day, but by naptime it became clear it was too good to be true. Michael put him down and brought me the baby monitor. Tied to a thin warn ribbon, I slung it around the crown of my head, dangling just beside my ear so I can hear subtle changes in Calvin’s breathing and movement.

I am always on alert during the first twenty minutes of Calvin's nap, and if I suspect an ensuing seizure I sit upstairs with him until I know he’s out of the woods. He was doing so well I stayed downstairs to make us some lunch. But ten minutes after Calvin went to sleep I heard him move ever so slightly—that’s all I needed to know that something was amiss. I scaled the stairs by twos and pulled the duvet from his face. He turned to look up in a disoriented semi-conscious daze, his patchy red cheeks and blue lips giving it away—another frigging seizure. And this one just three days after increasing one of his antiepileptic drugs and having increased his other medicine several times since January. More seizures. More drugs. More seizures. More drugs. It sickens me.

Every seizure crashes into my heart and bores a gaping black hole nothing can fill. Outside, what began as a glorious day, the sunshine glinting off of nightfall’s raindrops, became bleak and oppressive, dark clouds hanging heavy in the sky, bright colors subdued in a cloak of utter drabness. The chilling wind quivered leaves so much like Calvin’s tremors. I wonder if things will brighten, lighten. Will there ever be an end to all of this miserable sunless heartache?

But then I looked out the window, thinking it had begun to rain seeing sprinkles in the street puddle, but it was a blue jay bathing, dipping its head and flapping its wings gloriously in the cool water. Its mate appeared and I could see them perched high in our tree, silhouetted against a brilliant white sky. And as I leaned forward to see the pair, the sharp crimson of a cardinal peeked from the shadow of green rhododendron leaves. The day had brightened, though only a little.

Today, Monday, he had a bizarre day. I suspected another naptime seizure. It didn't come. It decided to come ten minutes after he went to sleep for the night, which almost never happens. It kills me.

The clouds are back, the sun is down and it's raining ... again.

Please, please share Calvin's story. We desperately need a cure for epilepsy.

photo by Michael Kolster

4.25.2011

school days

When I was a kid my parents never allowed us to cuss or say “shut up” or “hate” or “spastic” or “retard”. Even as a youngster these rules seemed like good ones, though one of my brothers relished using them on me anyway. Not to worry. I could take it.

Up until third grade my mom drove me and my brother to school in our squeaky 1960s sky blue and white Chevy Impala Bel Air. She’d drop us at the curb and I’d run to class, my salt and pepper plaid pleated skirt, white blouse and carmine wool sweater vanishing into a sea of scampering clones. Matching boys and girls were greeted by nuns, some with thin silvering hair pulled back tightly into buns accentuating sharp noses, their manner and facade equally austere.

In fourth grade I started attending public school, freeing my mom of her early morning drive. At the top of our gravel road I’d wait under the cover of a small shack until boarding a yellow bus elbow to elbow with my best friend Monica. We’d bounce happily in our seats, steaming up windows chit-chatting away. When the bus pulled into the Robinswood Elementary School parking lot, twenty rowdy kids tumbled out onto the pavement and scattered like so many leaves.

On the far side of the parking lot sat a lone one-story building boasting the same cinder block design as the main school. But inside it was different. Inside dwelled the Special Ed kids. We really never saw them up close, just got fleeting glimpses from afar. The kids were in wheelchairs and walkers, limping, drooling, yawning, recoiling. The mean students called them retards, spazzes. None of them were my friend, I didn’t know their names or recognize their faces. They were nobodies to me, sequestered to a special building, a special short bus, a special life hidden and unknown to me. My memories of those students are so vague, having had little to no exposure to them. Sometimes I wonder if they really existed.

Now days it’s different—disabled children, Autistic Children, children with cerebral palsy often mainstreamed with the “typical” kids, the “normal” kids, the ordinary kids. Calvin participates in a class like this for part of his school day. The other kindergartners love to be near him, to read to him, to somehow befriend him.

One day I brought Calvin to school after a doctor’s appointment. He was in my arms as I was saying goodbye and a string of his fellow kindergartners marched on past. When they saw Calvin each of them waved and, like a gaggle of geese, chirped “hiiiii Caaaaaaalvin!” My nostrils stung and I started to cry. My boy finally had some friends, some other kids who truly showed an interest and fondness for him. I'm glad he's not shunned or hidden or shamed like in the days when I was a kid growing up, back when my brother called me a retard.


4.24.2011

guilt

No matter what people say, when your child is born with some kind of serious disability, syndrome, birth defect—or perhaps doesn’t survive at all—there comes guilt. Serious guilt. No, I haven’t spoken with all of the women in the world who have suffered this kind of hardship. I’m just making an educated guess.

Two weeks before Calvin was born my husband Michael and I learned, during a sonogram, that he had significant neurological complications. He was missing a lot of his white matter—a lot. White matter is the brain’s superhighway, as it’s been explained to me, the way the brain communicates with its various parts and with the body. We need it ... bad.

Before Calvin was born the doctors initially thought they saw evidence of hemorrhaging that might have caused further trauma to his brain. After Calvin was born that theory was debunked, though I always wondered if the doctors were just playing nice to make me feel better, you know, assuage my guilt over somehow causing a hemorrhage.

Since then I’ve racked my own brain for what might have gone so terribly wrong. Did I swim too hard too fast too long? Did I rest enough eat enough drink enough sleep enough walk enough?

Maybe I shouldn’t have dived into that pool drank that bit of wine ate that cheese pet that dog taken that flight worn those pants gotten that cold had that sex slept on my back gotten pregnant so late had that amniocentesis.

My friend had a son with some very serious complications. I'm not sure the doctors ever completely figured it out and therefore were never able to fully relieve his intermittent misery. Having never met my friend in person—only commiserating over the phone or in emails—she told me she thought, at one point, perhaps her son was afflicted as the result of her poor posture, being a woman of tall stature. While assuring her that couldn't possibly be the case I also validated her concern, which I knew came to her naturally. There’s no getting around it. Guilt. It’s just what we do.

photo by Michael Kolster

4.23.2011

wicked affliction

As I've said before, this damn epilepsy is a moving target, a runaway train, an elusive enemy, a slippery venomous snake. We’ve given Calvin eight different anticonvulsant drugs over the course of five years and none of them have eliminated his seizures. He’s had as many as two dozen and as few as one in any given month, but no better. If he has seizures at night we increase his evening dose of medicine and, like a bulging balloon squeezed tightly on one end, the seizures simply migrate into the daytime; increase the daytime meds and they billow back into the night. And those are just the seizures we know about.

Who knows if Calvin might be having all sorts of seizures that we don’t observe or recognize. Past electroencephalograms (EEGs) haven’t detected anything stealthy, but epilepsy is a progressive disorder that can morph and worsen over time which is why it’s hard to keep up with, much less get ahead of.

Seventy-five percent of research dollars goes into epilepsy treatments, namely drugs, leaving only a quarter of funding for finding a cure—there’s not much money in that. This means that the nearly forty percent of children and adults (over one million Americans) who have intractable epilepsy with few, if any, options for leading a seizure free life void of heinous drug side effects, developmental delays and at great risk of sudden death.

My goal in writing this blog is to increase epilepsy awareness so we can nail this sucker down and blow it off the face of the earth—this wicked affliction, this moving target.

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4.22.2011

more things to be thankful for

Twilight.  In-laws.  A different perspective.  Pesto.  Dressing up.  Soft skin.  San Francisco.  Warm winds.  Seizure free days.  Goat cheese.  Flowers.  Flip flops.  Crazy dancing.  Long hot showers.  Acid jazz.  Swedish pancakes with butter and maple syrup.  Word play.  Thick warm socks.  Melting snow.  Riding a motorcycle.  Full moons.  A stiff drink.  Summer.  Dinner with hubby.  Coconut ice cream on a sugar cone.  Old friends.  The smell of sauteed onions.  Toothpicks.  Mom.  Leftovers.  Blonde redhead, Japan Cakes and Seaworthy.  Lattes.  Heated car seats.  Naps with Calvin.  Long strong hugs.  A good book.  Remembering dreams.  The Internet.  Heroes.  Incandescent light.  Wood stoves.  A reliable car.  Eggs.  Popcorn at the movies.  Sharp knives.  Forests and beaches.  Chapstick.  Foie gras.  Starlit skies.  Rhododendrons.  Calvin's giggles.  Parties.  Nachos.  Memories of my dad.  Sushi.  New friends.  Cutting grass.  A little black dress.  My husband's cooking.  Writing.  Vistas.  A screen porch.  Rocks.  Graying hair.  Sunday drives.  Barbecues.  Screw top wine bottles.  Running water.  Bart and Greg's DVD Explosion.  Good doctors.  New York.  Thunder and lightening and torrential rain.  Terrence Malick films.  Rudy the dog.  Michael, Michael, Michael.  My best boy Calvin.


4.21.2011

another rude awakening

I can think of few other things that are as disturbing to wake up to than the sound of my child having a seizure. Yesterday I had been expecting a second seizure all day long but somehow Calvin dodged that bullet—until this morning.

Throughout the night Calvin was restless, tossing and turning, incessantly rubbing his head in his hands in a semi-conscious state. I got up six or seven times to cover him back up. At five o’clock a sharp bark broke dead silence, though immediately I knew it wasn’t a dog, it was my son. The suspected seizure had arrived. After three minutes of upsetting convulsions, constricted breathing, spastic flailing and tremors we lifted Calvin from his crib together, our backs feeling the burden of his limp mass. We fell asleep, his feet tucked under my side, my hand draped over his hip. Forty-five minutes later he awoke to an insidious partial seizure—only a slight swallowing sound, his vacant roving eyes and a queer lopsided grimace giving it away.

Again, we decided to increase one of his antiepileptic drugs, a cousin of Valium, to which Calvin’s seizures have responded well in the past but to which he seems to habituate. I snuck downstairs to look back in my email records for titration instructions, then cut the tiny round pill into quarters, dropped the white chip onto Calvin’s tongue and chased it with a little water.

Now, day by day, we will sit and wait and hope, just like we have been doing for the past five long weary years. It’s all we can do, that is, until we have a cure.

And as I wrote those final words Calvin went into another seizure.

seizures and their auras

4.20.2011

wretched dilemma

Watching time-lapse video of someone’s face reminds me of a seizure, the bizarre image of rapidly fluttering eyelids and twitching lips. What’s missing is the pallid complexion, blueish lips, rolled back eyes, salivating mouth and, of course, the sick and miserable knowledge that it IS a seizure—your child’s seizure—his first seizure, his hundredth seizure, his thousandth seizure or worse.

An hour ago, after a god-awful morning of shattering screams, suddenly, while in his johnny-jump-up, Calvin went silent, his body limp. I jumped off of the couch and lifted his face to mine. I pointed out his flushed cheeks to my girlfriend Uli who was curled up in the corner chair. I pried his thumb from his mouth to see, by his face, he was having a seizure. As I unbuckled him and hoisted his dead weight from the jumper his body stiffened into a three-and-half foot, forty-pound human plank, the jumper straps clamped between his legs. Uli helped me, we got him to the couch, his back wedged up to its back. Her presence made my tears fall more readily as Calvin shivered and shook, blinked and twitched, his lips and fingers turning blue for want of oxygen.

It’s a wretched dilemma watching Calvin have seizure after seizure after seizure in the face of increasing the drugs meant to stop them—the mysterious white chemical powders molded into rounded happy shapes, some coated in pleasant salmon-pink, scored neatly in their centers. Innocuous? Hardly. Seizures or no seizures, would he be walking independently if not for the drugs? Perhaps he’d be talking. Perhaps he wouldn’t be screaming. Maybe he'd be sleeping through the night. What about the state of his kidneys and liver? No one knows for certain. We just know that for five years we've been living epilepsy's pitch black reality and we don’t see a light at the end of the tunnel.

He's screaming again. I think we got another one coming.

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.

photo by Michael Kolster

4.19.2011

bedfellows

Epilepsy and sleep are bedfellows. A high percentage of seizures occur either during sleep or in the transition from wakefulness to sleep or visa verse. Calvin used to have a lot of what I called “naptime onset” seizures, occurring within the first fifteen minutes of falling asleep for his afternoon nap.

I track Calvin’s seizures in a journal and highlight them on the calendar in orange marker so that I have a written record and a visual sense of their patterns necessary to evaluate the efficacy of his treatment. I can remember when Calvin first started having these subtle naptime seizures years ago. They went away for a while. Now they're back.

Watching Calvin nap, particularly when I suspect an imminent seizure, is not the most pleasant thing in the world for me. I sit at the edge of the chair and breathe shallowly, like a marksman taking aim, my chest taut, watching for the telltale fluttering of my son's eyes. I hear his breathing and the seconds ticking by—nothing else. Every twitch of his fingers shaves a minute, a day or perhaps a week off of my life, sprouts another gray hair. When twenty minutes go by he’s pretty much out of the woods and will usually sleep peacefully for the remainder of an hour without so much as moving or having a seizure.

Then and only then can I breathe deeply and retire to my own bed to try and get some rest. Fatigued, my body feels as though I’ve just watched a suspenseful movie, the kind that lays one to waste from the extended tension of muscles and stress to the psyche. But this ain't no movie with popcorn and junior mints and whose to say if there will be a happy ending?

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.

photo by Michael Kolster

4.18.2011

breathing underwater

I have recurring dreams, some unsettling, others uplifting and many that are neither, just a chain of seemingly unrelated mundane dream happenings. One kind of dream I have isn’t recurring in terms of plot but more in terms of its nature, its sensation, and my awareness of that feeling. The sensation I enjoy is breathing underwater. It’s kind of akin to dreams of flying, like those in which I rise up on my toes and gently, effortlessly lift off to soar. It’s not only the flying that is so amazing and wonderful, but the utter confidence that I can do it.

In the dreams where I breathe underwater it's unclear if I am submersed in a lake, or river, or an ocean—perhaps none of these. Rather, the existing landscape simply morphs into an underwater scene as I float weightless, suspended in a tepid current hovering over a rolling, verdant terrain. For a fraction of a dream-second I pause, conscious of the fact that there is no air, that I am sheathed heavily in water. Then slowly, deeply I inhale through my nose. My lungs drink this river so fluidly and naturally—like air—my mind and body surrender to its current, without a care in the world, only the faith that I can breathe. Everything melts away revealing only this serene feeling, this Utopian state, this Xanadu.

I often wonder if my dreams take me under because of the years I spent playing in the water holding my breath for sharks and minnows, diving for pennies, or trying with my lithe, flaxen-haired teammates to capture a greased watermelon, which by its surreal spatial slow motion half floating-half sinking manner eluded our grasp.

My boy Calvin has begun experimenting in the bath holding his breath, dipping his face under water for a time. He comes up red and takes a deep breath. It scared Michael the first time he saw it, and he grabbed for Calvin's arm instinctively. I think it’s cute, my little fish-pie taking after his mama with a fearless joy of water. I’m glad he’s learning these laws of nature, while at the same time defying them—defying gravity—with the water's buoyancy.

I wonder if Calvin dreams of breathing underwater, too. I hope he does.

photo by Michael Kolster

4.17.2011

healthy child

Calvin attended preschool at a place called Morrison Developmental Center. It used to be called the Cerebral Palsy Center, though it caters to disabled kids and typical kids alike, sharing one big classroom. That’s what made it great.

There was a cute little boy in his class who had what seemed like a pretty severe case of Down Syndrome. He also had epilepsy, like Calvin. His nurse pushed him into class reclined in his wheelchair, his head in a supportive rest. I think he may have been tube fed, too. I recall him crying at times, his face all hot and pink, making my throat tighten and my heart sink. Poor little guy, I thought. I wished I could take his misery away. Mostly, though, he slept during the few hours I was there watching Calvin, the heavy sedating epilepsy drugs working their black magic on his brain, and Calvin's.

Last year we ran into the boy with his mother at a Boston hospital. Our sons share the same wonderful neurologist. In a short exchange we introduced ourselves, she a kind, attractive curly-haired blond who I guessed was several years younger than I. She asked if we had other children. I said, no, thankfully we did not, thinking Calvin such a handful, medically, physically and emotionally, and being too old to risk another pregnancy. By sheer reflex I asked her the same. Her eyes brightened and she replied, "thankfully, yes," that her second child was some sort of godsend that helped her get through the difficult days, the grief, pain and worry over her disabled child, and who somehow made it all worthwhile, all okay. At that, a hot poker jabbed into my ribs and worked around fiercely in my viscera. My heart cringed and I felt a little ill. Cat got my tongue, too, though I tried my best to conceal the blow. I wanted what she had, what she so effortlessly seemed to have that filled her heart and soul with joyous riches beyond any I could possibly imagine.

She ... had a healthy child.



4.16.2011

drooling

Drooling is something Calvin has pretty much always done. His physical therapists have thought that it is the result of Calvin’s low muscle tone. It made sense to me, having seen children and adults with cerebral palsy troubled by incessantly glistening lips—shining saliva strands stretched from chin to collar.

When Calvin was a baby he wore bibs all day long to protect his clothing from getting soaked. Sometimes, though, that wasn't a sufficient barrier to the constant wetness which causes a mild prickly rash to form on his chest. In preschool, we began tying cotton bandannas around his neck. Folded diagonally, I sewed thick batting into the middle of each bandanna like a cotton sandwich, then stitched in his name. The colorful western kerchief became Calvin’s signature. He goes through about five to ten each day, our chairs, tables and freezer draped with limp, bright cloth triangles like the drooping clocks in a Dali painting.

About a year and a half ago we weaned Calvin off of one of his seizure medicines, Clonazepam, a relative of Valium. He stopped drooling. You’d think I’d won the lottery. What an incredibly liberating feeling just to put his shirt over his head and be done with it. No bandanna. And to see my sweet boy’s cute little neck peeking above his collar ... well, I can’t really describe the feeling except to say that it was pure motherly bliss.

It’s amazing what one tiny, seemingly insignificant event or discovery can do to lift my spirits amongst so much anguish, drudgery, angst, fatigue and despair. But when these small gifts are bestowed upon me, I don’t take them for granted. In life, nothing is guaranteed.

We replaced Calvin’s Clonazepam with its cousin Clobazam, and the drooling returned. I tell myself there are worse things. And there are.

photo by Michael Kolster

4.15.2011

phlebotomy neurology psychology

Yesterday we drove to Boston to see Calvin's neurology team. Up at five, out the door by seven-thirty, in Boston gridlock by nine forty-five and at the hospital by ten to draw blood.

After the long drive, Calvin having screamed the entire first hour, we were already exhausted, as if we had driven seventy-five the whole way with all four windows down, cars and trucks roaring by. But shortly after checking in and seeing Francoise's smiling face, her dark skin gleaming against her bleached white lab coat, we breathed a sigh of relief.

Francoise is what we call our "one stick wonder". To say she is a pro at drawing blood from kids like Calvin who are a "hard stick" because of their low muscle tone is a gross understatement. She is practically a miracle, the only phlebotomist who gets it first try every time, and then it gushes like Old Faithful, which is a very good thing. Yesterday was no exception. I offered to move her up to Maine where our experience with blood draws is often painful for all of us, but mostly for Calvin who must endure restraint, tight tourniquets and steely needles poking, prodding and fishing around in his arms, hands and ankles, sometimes to no avail, leaving bruises all over his body and to our psyches.

Next, Calvin's neurologist and dietitian greeted us with hugs and spent a relaxing hour discussing Calvin's seizure activity, behavior and various plans of action. Like always, they mostly listen, answer our questions, validate our suspicions and offer options for moving forward. They let us steer the boat, the ultimate decision being ours. We are the best team in the world. We troubleshoot, weigh risks versus benefits and utmost in our minds is quality of life, for Calvin and for us.

For now we will hold steady on Calvin's two antiepilpetic medications, knowing there is room to move up on both, though hoping it's not necessary. We will enjoy transitioning fully off of the Ketogenic diet which we have been weaning Calvin from over the course of eighteen months. We will continue to be tireless advocates looking for ways to stomp out Calvin's seizures.

The drive home was relaxing. Calvin was calm and collected, playing with his bare feet and putting his toes in his mouth much of the way. When he's cute, he's damn cute. When he's not, he's so not. These days, mostly, and with the help of his neurology team's tenacity and our thoughtful analysis, he's mostly damn cute. For now, anyway.

4.14.2011

crack you like a nut

Epilepsy, I’m gonna crack you like a nut,
expose you, bruise you and kick your butt,
you’ve been messin’ with us, pushing to the brink,
good thing I had me a superbad shrink.

Epilepsy, you’re a big bully jerk,
but I ain’t scared, I’m like Captain Kirk,
I’m rising up high with all of my might,
gonna muck you up and make it right.

In the wee morning hours when you strike
my pure sweet innocent little tyke,
you send me in a rage, all nasty and mean,
and that’s before I’ve had caffeine.

Epilepsy, you’re a colossal creep,
You ruin fine days and peaceful nights’ sleep,
me and my peeps are gonna bust your crown,
better watch your back cuz you’re goin’ down.

4.12.2011

calvin’s view

Not too long ago a former teacher of mine wrote to me. He keeps up with the blog and occasionally comments, particularly when I write about my childhood and my family, who he was close to when I was growing up.

Hoping to learn more about Calvin’s story, rather than exclusively my own story as it relates to Calvin, he suggested I write about what a day, a walk in the park, or a trip to something like the circus might be like for Calvin. I thought it sounded like a good idea, to somehow show Calvin’s view, but frankly, and perhaps I am simply not imaginative enough, I cannot get my head around the task.

I had written to him:

 “it is difficult to imagine what Calvin is or is not aware of. He is clearly oblivious to things like birthdays and other abstractions. He even ignores our dog. His expressive communication is practically nil. It isn't completely clear if he knows the difference between us and other people. I'd like to think he does, and perhaps he is aware of a whole lot more than he appears to be, but that may not be saying much.”

I’ve started posts, written from Calvin’s perspective, several times. Somehow it just doesn’t gel. I’ll have to spend more time thinking about how life must be from my son’s perspective. I can start with the basics. He feels pain and discomfort. He knows no fear. He is visceral, tactile, reflexive, reactive. He loves attention and physical affection, tickles, hugs, kisses. He enjoys music and funny sounds. He relishes motoring around the house, up down and around and has to be moving one hundred percent of the time unless he is asleep. Any and all objects go into his mouth. If he could, he’d bang the hell out of everything, and he just can't stop staring at the sun. It's his bling-bling, I guess. Not much to go on but it's a start.

But to know how he deeply feels about complex things—his emotional connection to the world and how he cognitively interprets what his mind and body takes in—I am at a complete loss. I recall a photo of Calvin at an agricultural fair, holding on to a cyclone fence surrounding pigs and goats in piles of sawdust. He is smiling but I'm pretty sure it's the diamond pattern of the wire and the feel of its metal that engages him. He doesn't appear to see the animals, though perhaps he hears them.

I’ll keep grappling with the idea of Calvin's view. After all, it is Calvin’s story. I wouldn’t be writing it if it weren’t for him.


4.11.2011

victory's tears

Calvin’s class goes swimming every Thursday at the college pool two blocks from our home. Last Thursday I walked there with Rudy the dog to watch Calvin frolic in the water a bit. Rudy waited for me outside, tied up to a post. The pool was empty, a sheet of aqua glass, but scores of onlookers, some half-naked participants, others t-shirt and flip-flop clad volunteers, lined its deck. A young girl was singing the National Anthem in a clear cool voice. Then she passed the microphone to another girl who carefully spoke the words, "Let me win, but if I cannot win, let me be brave in the attempt." The girls had something in common. They were both disabled. They had just commenced the community's Special Olympics.

Having just stepped into this surreal scene—and though mostly white—thick with the diversity of humanity, a rush of emotion flooded over me. In an effort to conceal my weeping I hugged the sweating tile wall. Two of Calvin’s barefoot classmates, Olivia and George, both eight and silent, pigeon-toed past in their suits, clinging to aids who helped them don belted Styrofoam floats. Calvin, too young to participate, had stayed behind at school.

A few lanes over, two swimmers windmilled neck and neck on their backs for a hundred yards. Cheers and applause filled the stadium as they splashed home, their beet red faces sporting huge grins.

Up next, a solitary boy got on his mark and slapped into the water at the sharp blow of a whistle. With arching arms he dug his way across the pool in a slow motion butterfly sprint, hit the end, sprung out and proudly traipsed by me, dripping wet. I gave him a big thumbs up at which his toothy smile spread ear to ear.

With each victory my heart swelled. From my screwed up face more tears splashed onto the wet floor. I was overwhelmed, though lost without a name for what I was feeling. I wondered, too, how many of these athletes, besides George, suffered epilepsy. No doubt more than just a few amongst so many with Down Syndrome, Autism and cerebral palsy.

Again the starter blew her whistle. Olivia and George, bobbing nearly vertical with the help of their aids, paddled and kicked and wriggled their way at a snail’s pace to the finish line, oblivious to the events but happy and engaged. The crowd cheered as they reached their goal.

I thirsted for more but Rudy was outside waiting. As he and I slowly skirted the facility, alone with the sun on our faces, I broke down, the cascade of emotion nearly bringing me to my knees. Joy blended and morphed into sorrow and grief and back again. Fatigued, my vision spun me in circles, blurred by a curtain of tears. What a world Calvin has brought me into. Strange. Special. Heart-wrenching. On the ground snow and ice finally melting as tender blades of grass sparkled like emeralds in the sun.

photo by Michael Kolster

4.10.2011

sunday morning seizures

Two days ago we increased one of Calvin’s anticonvulsant medicines—again—in our continued hope to snuff out his seizures.

This morning he awoke without so much as a grin from our tickles and kisses. Something was amiss.

While feeding Calvin breakfast his chewing became rote. Slightly flushed, his dull expressionless eyes stared off into nothingness, listless. From pink his cheeks turned the pale translucent lime-yellow of shock, of sour milk and green tea. A creepy lopsided grimace crept over his face like a mask, his lips and fingertips, lacking oxygen, dusking before our eyes. In a minute or so he snapped out of it. Half an hour later came a second, similar spell.

Calvin spent the morning restless and off balance, both of which make him difficult if not nearly impossible to handle. So we slipped him into his johnny-jump-up to finish our coffee and cereal. I put on Calvin’s favorite music only to turn around and find him slumped in his jumper. I knelt down to peer into his face. Patchy flushed cheeks suggested another seizure. Strange, telltale swallowing sounds confirmed it. I unbuckled him, whisked him out and laid him on the couch. His color and the look in his eyes warned of a big bad one. Michael rushed to the couch. Since it was Calvin’s third seizure in less than two hours, I decided to give him the rectal Valium to stop the vicious cluster from burning out of control. Calvin’s little body started convulsing badly as Michael pulled down his pajamas and diaper. I popped off the plastic lid, tore open the lube packet, squeezed a glob of gel onto the applicator, stuck it into his bottom and counted. One. Two. Three. I then removed the vial and pinched his buttocks together to keep the oozing gel inside.

Three minutes later, when it was over, Michael hauled Calvin’s limp weight up the stairs to our bed where I laid down next to him. Asleep beside me—the Valium, having numbed his mind—he drifts in a paralyzing coma. Outside the glaring sun casts cold, stark shadows on the backs of trees. It’s April and everything still looks dead. If not for chirping birds and the Cardinal pair building their nest right outside our window I’d think we were heading into a cruel bitter winter. But the sap is flowing, shining beads of it trickling down naked trunks like so many tears.

photo by Michael Kolster

4.09.2011

sometimes lucky

Sometimes, especially when he looks me in the eyes and pulls me close, I feel so damn lucky to be his mom.

photo by Michael Kolster

4.08.2011

seizure cry

For the last three days Calvin’s mania has been building like steam in a pressure cooker. It has mostly manifested in hysterical laughter, the kind that should be contagious, but lately is only worrisome.

Yesterday morning at breakfast it took twice as long as usual to feed him, pausing between bites hoping he’d chew the morsel of sausage resting precariously on his tongue. He tipped his head back in laughter and shook it side to side like some sort of sick Stevie Wonder or Linda Blair impression. A couple of times the chunk of unchewed food lodged for a moment in his throat and caused him to cough it up. He just couldn’t focus on the task of eating. Michael and I both knew his behavior was likely a bad omen but there was nothing we could do but sit, wait and hope.

Later, Calvin was too ramped up to nap, like the Energizer Bunny on speed. I had expected a seizure to arrive Wednesday night. It didn’t. Instead, it came last evening in the bath after forty-five minutes screaming his head off in the car on the way home from the endocrinologist.

In the bath, as I was relieving his nurse, Calvin's mind-rattling shrieking continued. Maniacally, he spun and splashed and knelt—up and down up and down up and down. At one point Calvin pitched onto his forehead with a dull iron clunk then resumed his cranked-up form. Moments later an inhuman yet sadly familiar cry— swollen and tight—bled out of him as he pitched forward onto his crown again. “Seizure,” I cried, and swooped him up dripping, rigid and convulsing, his eyes rolled back in his head.

I laid his twitching body on our bed, checked the clock, covered and dabbed him with a towel the nurse brought. A low angle of sunlight streamed in through the windows, his tiny goosebumps casting shadows like braille on his smooth, fair thighs. Two and a half minutes later, he was coming out of it saying “uh-uh”—mama.

Michael had come swiftly and stayed by Calvin's side while I hurried downstairs to prepare his evening meds to give to him early, before he'd drift off to sleep. We propped up his head with several down pillows and a Boppy. Calvin was able to take his meds without food like the star that he is. Back downstairs I weighed yogurt, oil and mashed blackberries, which I fed to him by the spoonful. Calvin’s heavy lids won over his hunger and he fell asleep between bites, his pale skin fine as a porcelain doll, soft as a warm peach and more precious than any words can describe.


4.07.2011

sometimes tired

Sometimes—for fleeting moments—I am so very tired of being his mother.

photo by Michael Kolster

4.06.2011

misfits

I’ve always been drawn to that which is “other", perhaps because I feel a bit of the misfit myself.

I’ve got a soft spot—an attraction— for the Charlie Brown Christmas tree, the misshapen cookie, the mangled potato chip, the scrawny baby bird that fell out of its nest, the three-legged shelter dog.

When it comes to my fellow humans I want to know the wallflower, the genius, the underdog, the social deviant, the nerd, the black sheep of the family, the gypsy, the kid with the Coke bottle glasses, the hermit, the brother from another planet, the chick with tattoos and piercings, the immigrant, the guy with the magenta mohawk. Besides being drawn I figure if I can rub elbows with these wonderfully curious—yet in some ways familiar—bodies I can glean something, tease out some new facet of myself that I didn’t know existed, improve on myself or perhaps add a soft layer of humanity that was missing from my heart. Let me intimately know "other" and I am happy.

And maybe, just maybe, I can do the same in return—nurture them, love them, understand them, lift them up, befriend them, embrace them, make them laugh.

So it's no surprise that Michael is my husband. And I suppose in some weird and wonderful way, by some random artistry, it makes sense that Calvin is my son, my little misfit. I don’t mean to say I was chosen to be his mother or that it was some grand design or plan that he became my son. Just that it works. By some crazy serendipity, it works.


4.05.2011

sister mermaid

My friend Martha emailed me in response to one of my blogs, small talk in which I mention feeling avoided, thinking perhaps that my grief and despair were seen as contagious. She thoughtfully wrote:

"there have been times I've been at the edges of someone's tragedy, and it's a hard place to walk. You don't want to swoop in inappropriately and accidentally say something stupid or offensive. There's also knowing that you're going to carry that person's grief with you, and not everyone is strong enough to do that."

As soon as I read her words I knew she was right and I knew I’d—at least once—committed the same honest crime, or something similar.

After graduating college I briefly reconnected with my teen aged kindred spirit, my sister mermaid. She had lamentably moved to Florida the summer before our junior year. We had been like kissing cousins, two peas in a pod, fraternal Siamese twins, if that’s possible. She had been living in Eugene, Oregon. Seven years had passed since we had sat glued at the foot of tall skinny lockers gawking up at kids scuffing Nike Swoosh sneakers at the end of tight Gloria Vanderbilt designer jeans and faded Levi’s 501s—two sprites invisible to the passers by. Now, she was pregnant—beautiful, voluptuous round goddess. We went swimming together again and, like me, she was forever mermaid.

One evening, weeks later, I got a phone call. I was sitting in a hard edged shadow at the bar in my parent’s kitchen—the telephone stuck to the wall like a leach. It was her mother, whose voice I recognized though I’d never heard over the phone—quiet and southern, like puny waves lapping a Texan shore. She said the child, a lovely girl, had been stillborn. I think she told me her name—her granddaughter’s name. I was frozen. Utterly numb. I don’t know what I said or if I said anything. I must have. I can only imagine the words, “I’m so sorry.” I was shaking, felt sick. More than anything I felt helpless. “What must she be feeling?” I thought. I couldn’t even begin to imagine. So I didn't.

I don’t remember ever speaking to my friend that night or in the weeks that followed. I had no concept of what it was to love—lose—a child of your own, your flesh, tethered to you by a blood-line that exists between no other two beings. There were no words. There are no words. There can be no understanding. My mouth round and open, but silent, my heart lost trying to follow a song that was foreign to me in every way. My legs still feel heavy knowing I could have been there for her. Could have driven five hours to squeeze a cool washcloth over her forehead, brush back her hair, hold her hand, or just stand close and listen to her breathing, her sobs, her silent torment. But I did none of that. I didn’t swoop in and say something stupid. Perhaps worse, I think I did nothing at all.

from the cover of The Chronology of Water by Lidia Yuknavitch
photo by Andy Mingo

4.04.2011

blue hill

One of the last family trips we’ve taken was nearly five years ago. We loaded up the car with camping supplies, firewood, Calvin, and a bunch of other paraphernalia, filling the car to the brim, then headed north along Maine’s serpentine coast to one of our favorite places in the world, The Lookout.

Perched in the center of a grassy hillside is the historic white hotel. It shares a thin peninsula with several modest cabins buttressed by chunky stone fireplaces and weathered wooden decks smelling of pine and seawater. Inside the cabins, oversized couches with thin upholstery elbow shelves stacked with dog-eared books, faded magazines and board games missing pieces.

Once inside, we dumped our stuff on a soft bed wrapped in a tufted cotton spread and carried Calvin to the bluff at the land’s edge. Michael attempted the steep eroding ledge first, I handed Calvin to him then skidded down in my sneakers. The tide was way out revealing a curved sandbar of pebbles and crushed shells, tiny chips of indigo and knobby barnacled oysters with opalescent cores. We spent a few hours exploring clear pools, warming ourselves on flat rocks and resting in the shade of twin cypress trees clinging to chunks of soil atop a rocky outcropping.

After a lazy day we put Calvin to bed then cooked and ate dinner in the adjoining kitchen. Amidst the dull clang washing wooden spoons and metal pots we heard Calvin make a strange sound. Quickly, we peeled back his blankets to see him blue and gulping. It appeared he was having—or had—a seizure. This was the first one since his epilepsy diagnosis the previous month and after having started an anticonvulsant drug. Calvin was only two.

I ran up the hill a hundred yards to the caretaker’s house. It was after ten and dark outside but I could see the glow of a kitchen light through a small window. Hearing my urgent knocks he swiftly answered the door and, out of breath, I asked to borrow his phone to call 9-1-1. Then I ran back to our cabin where Michael held Calvin on the bed. He was feverish, clammy and listless.

Within minutes some First Responders appeared, the ambulance not far behind. They asked us if Calvin was responding normally and I told them “it’s hard for me to tell,” the permanent jerky roving of his eyes making it difficult to know. “Calvin never looks us in the face or answers to his name,” I said. The EMT checked his pupils and heart rate and told us that she believed he was post-ictal. “What does that mean?” I worriedly asked her. She described it as the disorienting state after a seizure occurs.

In the boxy ambulance I laid on the gurney hugging Calvin in my lap. Michael hurriedly packed up our things and followed us in the car. The Blue Hill Hospital, twenty minutes away, was very small, but the staff was kind and understanding, though there was really nothing they could do.

In the wee hours of the morning after Calvin had stabilized we embarked on our three hour ride home. Later that day, a doctor’s visit and some x-rays revealed that Calvin had pneumonia. We learned that any illness, no matter how benign it might seem, often triggers seizures in people with epilepsy. After that harrowing weekend we didn’t take any family vacations for over four years, and since then, only one. The seizures continue to surprise us around every corner, and the drugs climb and multiply. So mostly we stay put, and dream often of visiting magical places again, like The Lookout in Blue Hill.

4.03.2011

camping

Last night at twilight I walked alone down my street to a party wearing scarf, hat and gloves carrying a screw-top bottle of red wine. Golden light flowed from neighbors’ shuttered windows like burning embers. The sky glowed shades of violet fading to a luminous yellow strip that peeked behind tall silhouettes of blackened pines. The scent of burning wood filled my nostrils. It reminded me of camping.

I used to do a lot of camping. As a kid, my family hauled our trailer hours on winding roads that lead to the coast where my dad took us clamming and berry picking. At night, over a campfire, we roasted marshmallows and blobs of sticky biscuit dough at the end of saplings. In high school and college my friends and I slept under starry black skies on the banks of Lake Chelan, water skiing in the clear frigid water for days on end, drinking beer from cans and eating hot dogs and chips.

My husband Michael loves camping, too. From our homes in San Francisco the two of us used to cram a car full of supplies; stove, coffee, pans, cups, plates, matches, condiments, tent, tarp, sleeping bags. We explored places like The Sierras, Big Sur, The Snake River, Glacier National Park, and Crater Lake. Exciting thunderous storms cracked and pelted us with rain and hail then heat waves parched our throats. On a couple of cross-country trips we nestled up to the shores of the Ogallala Reservoir in Nebraska, spent chilly nights in the thin air of the Colorado Rockies, ate Fish Boil in Door County Wisconsin and swam in the mild waters of the Adirondack Lakes in upstate New York.

During our first few years in Maine we took my Jeep Wrangler off road deep into wooded land, down dry, craggy riverbeds and set up camp by lakes laced with nothing but boulders and tall trees. At night loons called over water as black and still as any you can imagine. Mosquitoes and black flies devoured us under clusters of white pines along the bank of the Mattawamkeag River.

It’s been over seven years since we’ve gone tent camping—since Calvin was born. We thought it might be possible once he got a little older, but then he was diagnosed with epilepsy. We couldn’t risk being in a remote area in case he needed emergency care, which he did often during those first few years. I miss camping terribly. It’s been one of the great joys in my life, a favorite pass time unlike no other, the clean air and aqua-green vistas lifting my spirits. I’d like to take Calvin camping with us some day and sit on stumps around a bonfire watching amber shadows flicker across each others hot faces, the cold night air at our backs.

photo by Michael Kolster

4.02.2011

my little monkey

Calvin is, most endearingly, my little monkey. He’s an imp who loves to cling around my neck and, when he’s not howling just like Howard Dean, he’s screeching like a chimpanzee. After a very short while it gets pretty obnoxious but sometimes it’s damn cute, even funny, and once in a while gets a chuckle out of Michael and me.

A favorite film of mine reminds me of my little monkey—the black and white classic Miracle on 34th Street with Natalie Wood. It was one of her first film roles as a child actor. She plays Susan, the six-year-old daughter of a pragmatic single mother, a Macy’s executive, who doesn’t believe in pretense or promoting fantasies such as Santa Claus.

At one point, Chris Kringle, who is employed by Macy’s as their seasonal Santa, is teaching the serious little Susan to imagine and pretend—to act like a monkey. Chris shows her what a chimp might sound like, pressing his rounded tongue slightly out of his mouth, the tip of it tucked inside his lower lip, then humming. It's kind of a cross between an “m” and an “n”—“mnnnnh, mnnnnh, mnnnnh.“ Calvin looks and sounds just like this when he is vocalizing, humming in his crib or while happily padding around the house.

Sad thing is, the humming is the extent of Calvin’s “speech.” He’s older than the girl in the movie who not only talks, but philosophizes. It’s a hard thing to get over knowing Calvin can’t share his dreams and desires, can’t pretend or tell us when something bothers him or hurts. He can only cry, hum, coo and scream. But if I have any morsel of power over that outcome, Calvin will be talking one day, if only to say a few simple words.

4.01.2011

suffocating storm

When it snows like it is today I wonder if it’s ever going to let up—leaden, like a thick crushed velvet shroud, streaming in wild currents across a grayscale backdrop. Out of a blinding white sky flakes large and silvery as fifty-cent pieces descend in an infinite army, some driving hard or spinning in whirlpools, others bouncing around an invisible pinball machine. The damp weight of these trillions of feathery crystals snaps delicate budding fractals and burdens thick-fingered branching bows—engulfing everything in sight in a numbing, debilitating, suffocating white storm. How much it reminds me of Calvin’s seizures.