off to boston

Alas, another drive to Boston. We take the dreaded trip six times a year, twice to see Calvin’s neuro-ophthalmologist and quarterly to see his neurologist.

Today, as usual, we woke up early and rushed to do it all. Sometimes we have enough time to feed Calvin at home, but if the appointment is early we give him his breakfast and medications on the road. But before we leave we rush to drink our coffee, eat our cereal, take showers—or not—brush our teeth, brush Calvin’s teeth, change his diaper, get dressed, get Calvin dressed, pack his medications and lunch, plus a spoon, bib, washcloth, toothbrush, toothpaste, several kerchiefs, extra diapers, an extra set of clothing—in case he soils what he is wearing—thermometer, acetaminophen suppositories, a toy or two, a book or two, his peanut snack and plenty of water.

Michael loads the stroller into the back of the car and makes another batch of hot coffee for the thermos. I strap Calvin in, we say goodbye to Rudy the dog, and we’re off. At some point during the trip, most reliably the first part, Calvin screams his head off. Michael and I can’t hear the radio or have a conversation—his shrieks are so loud. I feel my blood start to boil and I think I am going to pop. Eventually, though, Calvin works up a burp or two and he’s usually quieter after that.

We dart and weave through traffic on the rutted roads. Folks rubberneck at us as we sail down the highway. Inevitably, I see one or two people, their fingers dangling out open windows, nonchalantly release their cigarette butts into the wind. I’ve seen people text, put on mascara, read the paper, read books and rummage through bags on the floor of their passenger seat. Michael drives on cruise control maintaining an even 70 miles per hour, however, the rest of the world doesn’t, so he must irksomely swerve and break for merging cars and slowpokes in the fast lane.

The journey on the Maine highway is mostly beautiful, save for the infinite stretches of cracked, seamed, striped pavement. There are no billboards, only a few guardrails, traffic signs and mile-markers between the cars and banks of lush rolling green, impressive bluffs of beautiful ragged granite, stately pines, firs, spruce, oak, and mountain ash.

Now, the lupine is blooming, its purple feathered stems massed beyond the shoulder. Tall thin stalks of fuzzy cattails spring up from soggy troughs. A couple of times I’ve spotted a moose grazing in the shadows at the forest’s edge in winter. In spring, it’s miles and miles of deep emeralds, day-glo greens, gnarly silver trunks, slender peeling white birch and sprigs of budding copper sugar maples.

Once we make it through the thin strip of New Hampshire into Massachusetts the scene begins to change, and by the time we hit Route 1 we are bombarded with billboards, cyclone fences, rows of fast food stops and dense, speeding, erratic traffic. The scene is grey, grim, almost shocking.

And then, after two hours in the doctor’s office, we turn right round and do it again, only backwards. But the goal now is home, and with that in mind it’s somehow more bearable—even exciting.

crybaby

Years ago I met a woman whose son had grave neurological complications and intractable epilepsy. She told me that he had been born missing half of his brain and she didn’t know why ... no one knew why. As mothers of severely disabled kids, we had that in common—the not knowing.

We used to sit together on the couch drinking coffee and eating pastries while looking hard into each others eyes. I listened to her story and she listened to mine. We cried and hugged. I was in the depths of my grief over Calvin while she seemed resolved after years of misery perhaps having dulled, diminished or hardened off some.

When her son was a baby he’d cry all the time, day into night. She wasn’t sure if it was due to gastrointestinal stress from his inconceivably low muscle tone or if it was purely neurological in nature. She described how the only way to stop her son’s shrieks was to rock him. Her nights were sleepless so she developed a plan. Inside the boy’s crib she placed a bouncy chair, the vibrating cloth-covered kind with the lazy v-shaped frame. She tied a string to the top edge long enough to dangle outside of the crib. At the base of her son’s crib she camped on a mattress with blankets and a pillow. When he cried she’d yank on the string to bounce him while at the same time, somehow, she tried to rest. He stopped crying but only until she drifted off, the string slipping from her grasp. No doubt the solution was abandoned.

My friend had a second child when her son was two. I’ve heard people say that having two children is exponentially harder. Her experience must have been impossible—impossible enough to make the grim decision to put her beloved but unhealthy, seizure-ridden child into a nursing home when he was only three. Around that time her marriage broke up.

Her crybaby, like mine, eventually grew out of his distress. He became accustomed to the nursing home where his needs were tended to around the clock by caring people rested enough to do so. Speechless, the boy lit up any room with his bright-as-a-star smile and he touched many lives from the confines of a bed and wheelchair. When he was just fourteen years old he contracted the last of countless cases of pneumonia and died, his entire loving family at his side. The boy had never enjoyed seizure freedom.

Please share Calvin's story with others. Help bring us one step closer to a cure by promoting epilepsy awareness, one story at a time.

practice makes possible

The video below, taken one year ago, describes any given day spent with Calvin. It's what we do ... practice, practice, practice toward the goal of ambulatory independence.

However, I have no doubt that Calvin would be walking by himself if he didn't have seizures and didn't have to take powerful anticonvulsant drugs that cause dizziness, lethargy, poor balance, weakness, visual disturbances and lack of coordination to name a few. 

And although he is stronger and has made some gains since this video was shot he is still my little drunken sailor who has made limited progress in the five years since he took his first steps. But, we doggedly press on because—while in a perfect world practice makes perfect—in Calvin's world, practice just might make possible.

bright future?

At four thirty this morning Calvin awoke again to a seizure. He cried out, almost imperceptibly, and in my sleepy haze I half wondered if it might have been our dog Rudy. But of course it was not. These early morning barks, cries, howls and shrieks never are—they are always Calvin’s.

After nearly three minutes of convulsions we took the heavy bundle of our son into bed with us and he writhed and shivered like a cold wet puppy. The gas his body seems to absorb from spasmodic air intake is palpable as it creaks and bubbles inside his gut. It’s hard to tell if his seizure is completely over or if he’s rolled right into another one of a different kind. His eyes jerk and rove and he rubs his fingertips and thumbs together madly in a sick repetitious cycle.

He’s been having seizures pretty much weekly since early March, often in small clusters of tonic-clonic (grand mal) and partial seizures. I hate them. He’s taking way more medicine than a few months ago when he was going as long as two and a half weeks between fits. None of it makes any goddamn sense.

A cardinal chirped in the still glowing mist of dawn while I lay there in bed with my gurgling, contorting child. I thought to myself, and wondered, what the hell do we do next?

Later, as dapper college seniors strolled by outside our window with their handsome, put-together parents, some the same age as Michael and I, Calvin had two more seizures, one in the johnny-jump-up and one in his high chair, different than I have seen before. I think this might be a new kind, an absence seizure—petit mal.

As bells from the nearby campus chapel chime and hundreds of students in caps and gowns assemble on the lawn to celebrate an important milestone of their lives—graduating from one of the country’s top liberal arts colleges—Calvin has yet another seizure. And I realized while these sharp kids and their families prepare for bright successful futures I am sitting quietly and intently next to Calvin’s crib preparing for the next minute, the next seizure. Bright future?

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

photo by Michael Kolster

night nurse

When Calvin was a baby, and after he weaned himself from nursing, he did a great job sleeping through the night. But we never took it for granted, knowing that a good thing is never guaranteed forever—that good things sometimes go bad.

Since Calvin started having seizures just before his second birthday, and with the advent of having to dump various anticonvulsant medications down his throat, his restful nights went out the window and continued to get worse.

Every night for the past several years I get up at least twice to look in on my boy. Usually it’s more like three to five times and has been as many as a dozen. Last night it was about eight times. I check to make sure he is covered, I check to see if he wants water and, if he does, I reach down into his crib and lift his head while he drinks from a baby bottle. I do this to prevent ear infections from fluid entering his Eustachian tubes. I flip him onto his left side when I think he has a painful or uncomfortable burp and I flip him on his right side if I think he has gas to release. I turn and cover him when he's incessantly rubbing his head in his hands from which he's developed a quarter-sized bald spot just above his hairline that, thankfully, his mass of thick auburn hair covers. I lay him back down when he is standing and throwing his body against the crib side or kneeling and banging his head against it. Sometimes I have to change his diaper or give him acetaminophen suppositories if I think he has a headache. Mostly, though, when I hear him I check to make sure he isn’t having a seizure. I am Calvin’s dedicated night nurse.

My greatest fear with all of these nocturnal ups and downs is that I will become so weary that some night I’ll sleep through his convulsions and restricted breathing, that he’ll die in his sleep from a seizure that doesn’t stop until it stops him. It can happen, and in the world of epilepsy it’s not a rare event. It’s called sudden death in epilepsy (SUDEP.)

But somehow, the motherliness of my body allows me to sleep lightly, awaken easily and almost always fall instantly back to sleep the moment my head touches the pillow. I guess I’ve hit some sort of stride or equilibrium with(out) sleep. And the occasional daytime nap doesn’t hurt.

photo by Michael Kolster

beautiful things

Calvin’s deep blue eyes. Magnolia blossoms. Wind through the trees. Sparkling grass. The face of a clock. Clouds. Music. Michael's photographs. Pink and orange tulips. Bees. Stone birdbaths. Stained glass windows. Calvin’s skin. Oriental rugs. Rhododendrons. Rudy’s coat. Crystal blue skies. Michael. Fire. Green grass. Rock benches. Fruit trees in blossom. Bridges. Driftwood. Calvin’s hair. My mom’s face. Light at dusk. Space. Calvin’s smile. Birds. Oceans. Stars.

photo by Michael Kolster

perpetual children

My brother Matt and his wife Stacey take care of my mom, an eighty-one year old who has had Alzheimer's probably for about ten years, perhaps longer. She's on the slow burn, still happy, upbeat and active, laughs at jokes and cracks some of her own. She engages pretty well in conversation as long as it's moving forward. She takes several daily walks, stretches and exercises her body and her brain. They've got her on a pretty tight regimen and I have no doubt that contributes greatly to her well being.

What Matt and Stacey deal with is not too dissimilar from raising Calvin, and thankfully they've got the part-time help of an in-home caregiver like we do for Calvin. Mom must take several medications in the morning and at night, she's on a strict diet to avoid gastrointestinal upset, she gets up at the same time, naps and goes to bed at the same time every day with little fluctuation, just like Calvin. She has to be watched—constantly—or she's bound to get into something undesirable, like eating a bite out of a spoiled moldy orange, or downing an entire glass of wine that isn't hers (she's not supposed to have alcohol.) Without going into too much detail, mom's hygiene is very closely monitored from morning shower to toilet time to readying for bed, just like we do with Calvin.

Mom's short term memory is pretty much shot, though sometimes she surprises me, and her long term memory has started to go. She recognizes photos of my dad but sometimes doesn't remember who he is and her receptive and expressive communication are beginning to show signs of wear. Often her responses to questions are complete non sequiturs, usually when she is tired.

So, my brother, who doesn't have kids but takes care of my mom, and I, who have a seven-year-old going on two, find ourselves in somewhat parallel universes, raising perpetual children. But it seems like we're both well cut out for the job. After all, we had the best mom and dad to prepare us.

Matt, mom and me

playing ball

When I was in my early teens I remember one sunny day when I followed my dad into the back yard to a clearing between the trees. His thin body towered above me, a well-worn short-sleeved sweatshirt hanging on his broad back. In his right hand he palmed a nut-brown football with a dirty seam, the sinews in his muscular forearm plucking like strings on a guitar.

My dad placed my small hand on top of the pointed oval ball, lacing my fingers into its raised stitches. In his deep smooth voice he described the drawback, the lead with the elbow and then the spiral release, like a catapult, off of my fingertips. Then he showed me his toss with the grace and finesse of a true athlete, the ball arching in perfect gyration. For me, holding the ball in one hand was difficult, but my large palms and long fingers—compared to my pint-sized physique—made it possible.

For what seemed like hours we were out there together on the short sunburned grass. I’d toss, he’d catch then lob back to me, the ball often dropping dead between my outstretched arms and bouncing erratically like a jumping bean, before rocking to a final rest. After about a gazillion throws I started to feel and see the result of my efforts, my dad’s precise critiques about each launch honing my skill.

At long last I hurled the orange-peeled ball into a beautiful high curve that came to a spinning halt in my dad’s palms. “Now you’re throwing like a man!” he hollered. I blushed. My heart burst with the happiness of the tomboy in hand-me-down cutoffs and faded sneakers that I was.

I ache to see Calvin and Michael out in our backyard doing the same as I sit back and sip tart lemonade languishing in the summer heat. For now—at least until we find a way besides the powerful sedatives to stop Calvin's seizures—I can only dream.

photo by Michael Kolster

missing pieces

When you have a disabled child, every day—perhaps many, many times a day—you notice something that should be there isn’t. Like the conundrum of the sock that goes missing and never turns up. But of course, it’s not at all like a missing sock.

Sometimes it’s subtle, like noticing that your dog understands simple questions and commands, but your seven-year-old doesn’t—or does but can’t comply—because something’s missing.

Perhaps during a visit to the Frosty Freeze you realize that you, your husband and even your dog can enjoy a delicious scoop of ice cream but that your son can't enjoy the favorite summer treat of seven-year-olds because he is on some crazy diet for epilepsy that no one else in their right mind would willingly try except diet-fanatic adults.

Or, a simple stroll down the block headed to the playground becomes a major struggle just to get your child to walk hand in hand with you—and straight—while persuading him not to sit down in the middle of the sidewalk every few steps. You only get past two houses on the block before you must abort the mission.

Often you hear kids passing by chattering with their parents about their friends or the weather or the new scooter they want to get and it reminds you of how you have absolutely no idea what goes on in your own kid’s head—ever.

And when you see your child’s development slow like molasses you understand that what is missing is a significant and important part of their brain. Somehow it just went missing, or perhaps it was never there in the first place. No one knows.

But then there are times when everything comes into focus, when your sweet goofy little kid, like no other kid in the world by a long shot, looks you right in the eyes—something he rarely does—leans into you with outstretched arms from the other side of the high chair tray and pulls you in close, kneads the skin at the nape of your neck with little fingers, giggles and smiles and won't let go. That’s when it feels like there is nothing missing at all.

peculiar perhaps

The other night Michael and I watched a short Greek film about a man who had lost his arms in a motorcycle accident. Though his physicality was peculiar—the eerie way his body moved lacking the weight and balance of his arms—he got around fine and was able to open a flat silver case, extract a cigarette and light it using the fleshy stubs that protruded from his floppy t-shirt sleeves. Inside their modest apartment his companion helped him to dress and to eat. The two were very simply happy and in love, though at night he continued to dream of having his arms.

During a solo visit to her parent’s house the girlfriend spoke openly and fondly of her man. Her mother seemed to understand the love she had for him but the woman’s father had only contempt and anger toward the man with no arms who loved his daughter. His concern was for his daughter’s long-term well being and happiness.

While in a rant the father cried, “but how can he hug you?” She chuckled, rocked back on her heels. Then she leaned in close to her father, her arms tight to her sides.
She pressed cheek to cheek—intimately—her chin nuzzled into his neck, her peaked shoulder hugging his jaw, letting her full weight sink into his body.

Her father, who had arms, had no words.

Flickr.com by Robert in Toronto

flaxen-haired boy

When I was fourteen I started seriously saving for college. I worked summers at my community swimming pool answering the office phone and selling candy. At fifteen I life-guarded and taught swimming lessons. At seventeen I started coaching teams of wiry kids with shiny hair, some who spent all day at the pool just like I had growing up. Coaching was one of those things that seemed to come naturally to me ... I was good at it, just like my big brother.

A fun part of coaching was getting to know some of the families, the ones where two, three, four or five of their kids all swam. These kids, for whatever reason, shined for me, perhaps because I too came from a swimmer family. It was in my blood, so we shared an understanding of the unique swimmer culture that helped us bond.

One special family I remember had two boys and a girl. All three were good swimmers, competed year-round and had wicked senses of dry humor. The girl was the youngest and she definitely followed in her brothers’ sarcastic footsteps. I liked that about her, about all of them. I saw my own family in theirs. The oldest boy was a senior in high school and a lifeguard—tall, blond, handsome, charming—the kind of kid who everyone liked, who was reliable and smart. Adults respected him, peers adored him, little kids looked up to him. The middle boy was shy and quiet, but I was fond of him for his raw swimming talent, his relaxed friendly manner and his clever witticisms. He seemed to be an old soul.

After that summer ended the oldest boy went off to college. Some time later I learned that he had accidentally fallen out of a fraternity’s third story window and had died. I was in shock. I remember reaching out to the boy’s family with some sort of token of consolation. Maybe it was a bouquet of flowers or a poem or a simple note, I don’t remember. I just remember thinking—perhaps knowing—that my gesture was insignificant, meaningless, that nothing I could say or do could make any difference at all in their lives.

I still think of that family from time to time. I wished I had known them better. They were close-knit, ate their dinners together, had lots of friends over, laughed and told stories, all of the things I thought were important and—someday—wanted my future family to be like. I imagine their happy days spent with their affable handsome son, their beloved big brother. I wonder how their lives changed in his absence, knowing intimately the inevitability of a life reshaped in the presence of overwhelming loss.

For one fine summer that flaxen-haired boy with the glimmering smile and limitless charisma, along with his lovely family, affected me and so many others—and still do—in a very positive enduring way. They will always be fondly remembered in my heart because in some small way they helped shape me into who I am today.

 

drowning our sorrows

Early this morning, rain pouring in sheets from the sky, I found myself in bed gazing outside in despair ... again. This time the tall graceful pines shown nearly black against a cloudy opaque sky, their crisscrossing limbs knitting a familiar lattice in the frame of my window.

At five o’clock, as the deluge began to pummel the rooftop, my boy cried out. I had seen it coming yesterday, with his manic behavior, incessant screaming accompanying a low-grade fever. This one lasted longer, his convulsions more pronounced than usual, and after nearly two minutes of spasms—still no signs of stopping—I began fearing this might be the one that lands us in the emergency room again. But thankfully the rhythmic jerks became erratic then subdued, his breathing resumed and his slender fingers went from the purplish look of frostbite back to healthy pink.

The three of us fell asleep to the peaceful drum of beads pattering on shingles. An hour later Calvin awoke to a partial seizure, his eyes zigzagging in their sockets, teeth slightly gnashing, the color draining from his lips as a queer lopsided grimace crept across them. His eyes stilled. It lasted almost two minutes—twice as long as usual—then knocked him out for another hour.

I wish this rain could wash away the miserable reality of reliable seizures Calvin must endure so that he could begin to rest, to develop, to live—and fully. For now I will simply imagine that the universe is showering us with its gorgeous tears of a trillion sparkling droplets. Drenching us. Cleansing us. Drowning our sorrows.

geoducking

There’s nothing quite like hunting for geoduck, (pronounced gooey duck.) Geoducks, which are large bivalve mollusks, are probably about the strangest living things I’ve ever seen. Describing them comes across as quite dubious. Picture a huge thick oval clam shell the size of a large hand, a soft slimy clam-colored body spilling out its two-sizes-too-small shell. Then imagine a one to two foot long grayish-pink neck, wrinkled and ridged resembling an elephant’s trunk or, as my sister delicately pointed out, a horse’s appendage. When you cut these suckers open to clean them, if indeed you truly crave chewing on the tough rubbery meat, you’ll find a large stomach the exact color and shape of an apple-sized garbanzo bean. That part, along with the other viscera, gets tossed down river for the fish to devour.

Michael and I haven’t been able to go camping since Calvin’s birth so I find myself reminiscing about family trips when I was a kid. Every couple of summers my mom and dad took the six of us to the Olympic Peninsula’s Hood Canal in Washington State. That’s where them geoducks hang out. It never seemed to be sunny or very warm on our trips, mostly gray overcast skies and rain. Even so, after a pancake breakfast in our cozy trailer, we’d don rubber boots and ponchos and set out. As a little kid the walk to the delta seemed long to me, my dad and my siblings carrying buckets and shovels, my mom a wooden fold-up stool with a striped fabric seat and a stubby knife for shucking oysters. Sometimes my dad carried me on his shoulders, something Michael and I have never been able to do with Calvin because of his poor muscle tone. Once my dad slipped on a slick muddy log and we fell like a tree into a foot of brownish sludge. We laughed and laughed.

Geoducks hang out down deep in the mud and stretch their siphons just above the water’s surface to breath. When the digging starts they retract their necks quick-like. The goal of the hunter is to dig down into the soft silty clay and get a firm grasp on the sucker before it’s gone forever. I remember my dad’s arm lost up to his shoulder in the murky holes he dug. The resulting pit is a foot or more deep and completely obscured by silty water. The jokesters in our family (everyone except my mom)—noting where the holes had been dug—shoved innocent bystanders (me) into them. Ha, ha. Very funny.

It’s too bad we won’t likely be able to bring Calvin hunting for geoduck. It’d be a riot.

Mike Kane/Wall Street Journal

not what you think

The other day a friend of mine walked her dog by the house as I was gardening. I greeted her in my grubbies—a rolled up pair of worn green twill pants, yellow rubber ankle boots, a ratty sweatshirt and dirty gloves. I’d been wearing it all for the past three days to save on laundry, and because I throw on the first thing I can find on the floor from the night before just so I can get out into it as soon as I load Calvin onto the school bus.

We talked of dogs, of kitchens, of the sucky spring weather we’ve been having, of lilacs, daughter’s weddings, dresses, son-in-laws to be, goats and Calvin. She reads the blog. She mentioned how she had no idea that Calvin had as many seizures as he does, that she thought he only had one every few months, that is, until she started reading the blog.

I told her about how some people have hundreds of seizures every day, every hour, every minute, and that their brain doesn’t have a chance to rest, to learn. For these unfortunate souls—and they are not few—there aren’t many options, if any, for seizure freedom. I told her of one uncommon therapy called a medically induced coma. This therapy is reserved for the very worst cases of epilepsy—those where the seizures are pretty much non-stop around the clock—when other medicines and diets don’t work, and when the patient isn't a candidate for brain surgery because of the types of seizures they have, like Calvin. The induced coma is risky and has an extremely high mortality rate. Even if it works the seizures often come back after months if not weeks.

Other people, in an effort to cease their seizures, have half of their brain removed in what is called a hemispherectomy. I kid you not. Others have the connection between the two sides of their brain severed, prohibiting the focal seizures from spreading to the entire brain. Still others have a pacemaker type of device surgically installed in their chest cavity with a wire that wraps around the vagus nerve in their necks sending regular electrical impulses to the brain that somehow reduces seizures. Many of these people still have to continue to taking antiepileptic medications to fully control their seizures.

Calivn, however, is in a terrible limbo unable to enjoy seizure freedom even while taking multiple anticonvulsants plus a rigorous, exacting high-fat diet. He is unable to benefit from brain surgery and too young to try the nerve stimulator. So Calvin, like hundreds of thousands of other children and adults, must continue to suffer the scourge of seizures while having to endure side effects from mind altering, mind numbing, mind f-ing drugs that send him further and further into retardation. And don’t forget the painful blood draws, the sleepless nights, the worry, the dread, the bleak outlook, the mortality.

Epilepsy is not what you think. Before Calvin started having seizures I thought that epilepsy was a benign condition for which you take a pill and everything is okay. Well, let me tell you again it is not. It is the furthest thing from that. It is a virtual hell that can strike anyone at any time and there is nothing you can do to prevent it from happening to you or someone you love. It just happens.

Please share Calvin’s story with others to promote epilepsy awareness. Help bring us one step closer to a cure. It’s not hard. Just do it one story at a time.

Calvin's EEG October 2008 photo by Michael Kolster

favorite days

Some of my most favorite days have been—and still are—spent at home alone with my boy Calvin.

Calvin March 2006

envy

Sometimes I find myself looking back, second guessing, grieving over the fact that we didn’t have a another child. But when I mull over the memories, the images, the facts—both emotionally and logically—it never really makes sense to have done so, or perhaps I’m just trying to make myself feel better.

Of course, there is more than a smattering of loss I feel for the healthy child we never had, and plenty of envy of the masses of strange couples who, inside my head, seem to flaunt their healthy kids, effortlessly performing calisthenics with their babbling fat babies as I try in vain to support my restless, sick, irritable child who can’t even stand up by himself, while worrying he’s about to have a seizure. If only they knew their good fortune. Perhaps, seeing the calamity which is us, they do.

We wanted a simple life, to focus on just one child, and if perchance we decided we wanted more children later, well, there are so many orphans out there who need a good home and a loving family, we thought. But when the reality of our difficult situation started sinking in and we began extrapolating life with Calvin I found myself yearning for another child—a healthy child. I selfishly wanted a child who could walk by himself, a child who could feed herself, a child who could speak, run, play, read, play music, dance, make art, write, even simply use the toilet. I wanted to teach her to drive, to send him to college, have philosophical conversations, meet his first girlfriend, tell her my thoughts about the universe, see her pregnant belly, love his children. The missed opportunities are infinite.

But then I see how far Calvin has come since the day his former neurologist told us he might never walk. I remember the hours upon hours I spent on my hands and knees teaching him to crawl when he was just tiny tot in my arms. I recount the days, weeks, months and years that I have followed Calvin around the house, harness reins in one hand, the other stretched out to catch a bump or fall. I’m aware of the countless trips spotting him up the stairs, then scooching step by step beside him on the way down. Now he can, almost consistently, climb into the tub on his own. A couple of weeks ago he rolled off of our bed safely by himself for the first time. He helps us dress and undress him a little. All of these things seem like minor miracles and are celebrated as such.

And then there is his health. If we had another child would I have caught Calvin's seizures in time to prevent a fatal outcome? Would I have woken to the cries that send him into a quivering mass of spasms? Would I have had the time to attend properly to his medical needs, wrangle with the infinite health insurance red-tape, manage the stack of drug prescriptions, train nurse after nurse after nurse, weigh each exacting meal, watch his every move in case of another seizure, another fall?

If we had another child what would they be feeling, experiencing? Neglect? Perhaps not, but it crosses my mind. I have read many stories written by parents of disabled children, and children with epilepsy, whose siblings suffer as a result. But that is life, right?

My gut tells me that if we had other children Calvin might still be hanging in a pathetic limbo unable to do much at all. My family tells me as much, that we've facilitated a lot of his development by sheer (wo)manpower, time and attention. Otherwise, would we have had to sequester him to a wheelchair, a walker, a bed, an institution? Instead, he’s making gains, he’s happy and he’s developing. Most of all we get to spend untold hours simply in each others' embrace. And for that, others might just be envious of me.

the spirit catches you

I just started reading this book a friend told me about called The Spirit Catches You and You Fall Down. It’s about a Hmong child with epilepsy and her American doctors. I think I might just have to put it down for now—too close to home. And yet I find it fascinating.

I’ve been reading it as an outsider looking into this child’s life, her doctors’ lives, her parents’ lives. And as that outsider, watching from a distance, I can see so clearly the tragic series of events in the life of a child with epilepsy; the countless trips to the emergency room, seizing hundreds—perhaps thousands—of times while not breathing, the painful blood draws, ingesting scores of mind-numbing medications, slipping further and further into retardation, the close calls with death.

And then I realize that the story I am reading is Calvin’s story, my story, Michael’s story. Since the book's main characters are Hmong and speak a different language than I do, I understand first hand what I have often said before, that epilepsy is a great equalizer, it can strike anyone—anytime, anywhere—and the story is the same ... pain, suffering, toxic drugs, bleak outlook for anything resembling a “normal” life.

Yes, the spirit catches you and you fall down. I just hope that my boy Calvin keeps getting back up.

gardening

Whenever I garden I think about my dad. He was always out there in it. In summers he’d come home from work and loosen his tie, his crisp white short-sleeved shirt bearing muscular tan forearms. He’d get into a thin v-neck t-shirt and always the same pair of beige, cream and green plaid shorts. Sometimes he wore gloves, others not. In my mind he’s always boasting a shovel, as if it were some appendage.

My dad worked for hours outside, tending to a garden chock full of green vegetables and berries—potatoes, rhubarb, corn—you name it. I helped him weed and water mostly in silence. It was just nice to be near him, his tall strong body, like a sort of superhero. When he wasn’t in the garden he was up some tree pruning, or on a ladder doing the same. He harvested Bing cherry, Rainier cherry, pie cherry, plum, pear and apple. He canned the fruit, dated the jars and stacked them on dusty shelves in the garage for winter breakfasts. His chunky homemade cinnamon applesauce was served warm with vanilla ice cream melting into its spicy golden juices. My friends still reminisce about the aroma and taste.

Our yard had several rhododendrons and beautiful huge camellias sprouting robust flowers too perfect and creamy to be believed. My dad taught me how to deadhead the dried brown petals to spur the next year’s growth. He shared with me his love of the outdoors, the smell of pollen in the air, the free feeling of getting our hands, face and clothing filthy dirty and to put a little elbow grease—no ... a lot of elbow grease—into everything I did. Doing that made me proud. He shaped me into a hard working, productive human being and for that I am forever thankful.

And so, with spring ostensibly here, I find myself out in it, working the earth, tending the shrubs and flowers and trees, and my dad comes to mind—daily, hourly. His strength runs through my very bones and when I lay on the cut grass to rest with Calvin and we put our arms around each other, I am embracing my dad, my dad is embracing me ... and he is embracing Calvin.

photo by Michael Kolster

serial seizures

Tuesday I logged in Calvin’s journal, “AMAZING WALKING + HYPER IN BATH + PRICKLY RASH ON NECK = SUSPECT SEIZURE SOON.” Yesterday, ten minutes after he fell asleep at naptime I heard him stir so I sprinted upstairs to look in on him. His eyes were half-mast and glassy, as if just about to drift off, but his unresponsiveness told me he had likely had one of his short, stealthy partial seizures. I stayed and watched him, holding my breath, until he fell asleep again.

Later, as I was washing dishes, I heard him again. He didn't cry out but the lip-smacking sound and rhythmic swishing of his sheets gave it away. He was full-on in a tonic-clonic seizure when I reached him.

I kept him on his side and removed his covers so he wouldn’t pull a muscle against them. His cheeks were flushed and patchy even amongst his grayish complexion and purple lips. For nearly three minutes convulsions ripped through his body so that I could hear the exchange of air in his gut. When it was over a few whimpers managed to escape his lips, but he continued to twist and writhe in its wake.

Soon his heavy lids closed again only to open minutes later into a partial seizure, his face red and hot, eyes vacant and watery as a pool. I scooped him into my arms and ran to our bed thinking this seizure would roll right into another tonic-clonic for which I’d have to administer emergency rectal Valium. But no sooner than we had reached the bed he snapped out of it.

Lying next to him as he fell back to sleep I thought, how many times have I stared out this window crying after Calvin has had a seizure? At dawn, in the dead of night, at twilight—and now. The promise of spring is in the air. Winds bend, whip and swirl the pines, their dark blueish-green tufts mingling with neon maple buds the color of perfect yellowy avocado flesh. At the ends of shoots tiny apricot-tinted flecks float above a deep emerald field that, like watercolor, fades to lime, then gold and finally the luminescent rose-copper of fallen needles. It is a beautiful day—outside.

As I lost myself in the scene beyond my window Calvin awoke to another partial seizure. I grabbed the Valium gel vial, unsnapped his corduroys and ripped open his diaper, pulled it down, inserted the tip and pushed the plunger. An ocean of sedation washed over and drown my boy, though he tried to fight it. Reaching out he pulled me close, his soft little hands firmly gripping the back of my neck. He wouldn’t let me go ... wouldn’t let me go. We both fell asleep, our faces touching. He’s more beautiful than ever when he sleeps, I sometimes think, so peaceful, his large almond-shaped eyelids relaxed and smooth, his parted lips full and rose-red as they should be.

Sleep baby, sleep.

practical jokes

I came from a family of practical jokers. My dad loved to hide around dark corners and jump out at me when I’d least expect it, bearing his long yellow teeth and bulging eyes, huge hands like claws reaching for my neck. He’d scare the living daylights out of me, then he’d laugh and I’d cry-laugh.

Once, at the dinner table, he recounted a joke he had played on his bald-headed colleague that day. My dad had a spray bottle used for watering the office plants and, with his other workmates egging him on, he stood behind his buddy and pretended to sneeze while simultaneously squirting a sprig of water on the back of the guy’s shiny head. The dude totally cringed and turned around slowly with a sickening look on his face only to find his friends cracking up. I’d never seen my father in such hysterics as when he told that story, his pinched red face and crinkled nose, his peaked eyebrows and jumping shoulders, tears of laughter filling his eyes. He looked like an elf—a six foot four inch one hundred and seventy pound elf. I see the same look in Calvin sometimes when we tickle him.

We kids learned the trade. When my brother Scott was in high school his impacted wisdom teeth were extracted, the gums stitched closed with black filament. He had some trouble with hemorrhaging that my mother monitored with extraordinary care. When he was feeling better, hoping to pull a fast one on my mom, my brother rummaged through her sewing kit to find a thick long black thread. He stuffed it in his mouth, approached her and uttered a kind of distressed hum. Out he pulled the thread feigning a look of surprise as inches and inches of it appeared like a string of black spaghetti between his pursed lips. My mom practically fainted until we all began to laugh. My poor mom.

In college I hung out with five guys—two fellow swimmers and their roommates. We played practical jokes on each other all the time. They stuck French fries in my glove fingers and snuck into my dorm room to hide peanuts ... everywhere. I kept finding them for months. For one guy’s birthday we got into his empty dorm room, each with cigars, lit up and vigorously puffed away until the room was filled with the bitter smoke. Once we made a huge snowball and rolled it into the center of his room.

Sadly, practical jokes would be lost on Calvin. But we give him plenty to laugh about with our tickles, raspberries and belly kisses. Michael and I are left to goof off and play practical jokes on each other. In this house we need all the levity we can get.

my favorite joker

needles and hinges

We’ve had to get Calvin’s blood drawn on a regular basis since he was diagnosed with epilepsy over five years ago. He customarily gets a complete blood count, liver and pancreatic functions and drug blood levels to name a few. It’s usually a painful experience for everyone involved. The blood draw that occurred just before Calvin’s third birthday was no exception.

This time Calvin’s nurse came along to help. She sat in the blue vinyl chair with Calvin propped on her knees, restraining his flailing arms and nodding head, the padded blue flip-arm resting on Calvin’s lap. I'm always responsible for soothing words and damage control, restraining his kicking legs while the phlebotomist ties the tourniquet and searches for a vein. If the phlebotomist finds a good vein the other lab tech holds Calvin’s arm taut while the thin butterfly needle is inserted. On rare occasions the phlebotomist strikes gold and the blood flows easily into five or six vials. Usually, though, they meet with difficulty and must fish around, poking and prodding while Calvin struggles, tears rolling down his hot red cheeks. Often several attempts are required, once in each arm and, if that fails, they try each hand in the tiny veins that travel down the top of his little wrist.

Partway through this particular painful draw Calvin’s crying escalated. His eyes rolled back in his head and he began to moan. I halted the procedure and scooped him up from the nurse’s arms suspecting a seizure to unfold. Calvin was listless and groaning, his eyes still drifting back in their sockets, the color draining from his face. I panicked. I had never seen him like this before. Eventually he calmed as I rocked him, his moans becoming whimpers, so we loaded him in the car and headed for home with the loathsome knowledge that we’d have to return later and try it again.

Once at home, during his diaper change, we noticed the source of his misery. Calvin’s side had been badly pinched in the metal hinge of the padded flip-arm. A large purple bruise with a bleeding center proved it. I felt sick; my poor defenseless kid who doesn't understand what's happening to him, only that he is in pain ... so much pain. If only Calvin could tell us—or point to—what is hurting him. I so desperately hope that one day he can. 

But if we could find a cure for epilepsy, Calvin wouldn't have to take these nasty drugs that cause heinous—sometimes lethal—side effects, and he may never need to have his blood drawn again.

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.

to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Calvin and his cousins. photo by Michael Kolster

to my mother

It is Yours

I wish you were here with me.
I miss your smile.
But I can see it every day
when Calvin looks up at me
with that toothy, dimpled grin.
It is an angel’s smile,
and it is yours.

I wish you were here with me.

I miss your hugs.
But I can feel them every day
when Calvin holds my neck
and presses his cheeks to mine.
His face is soft and warm,
and it is yours.

I wish you were here with me.
I miss stroking your hair.
But I can touch it every day
when I hold Calvin’s head in my hand
so gently when he sleeps.

His hair is fine and smooth,

and it is yours.

daddy's kisses

spoiled welcome

Michael picked me up from the airport yesterday morning after a red-eye home from San Diego. I had spent six days visiting my eighty-one year old mom who has Alzheimer’s. I arrived weary with a stiff neck and aching muscles from sleeping half sideways in the plane and then in an airport seat, my boots propped up awkwardly on my luggage.

As a welcome home he cooked a wonderful spaghetti dinner and we had just sat down to eat it in front of a rolling fire. Michael had the baby monitor slung around his head when we heard Calvin move. It was just after eight, his new time for seizures, so instinctively I ran upstairs and found Calvin, red in the face, listless and semi-responsive, suspicious he had had a silent seizure.

By the time I got downstairs my meal was cold but I had lost my appetite anyway. Michael had already resigned to washing the dishes and putting things away. So much for my warm welcome home. It was spoiled.

It's a crappy existence to be imprisoned by a sick kid who never seems to get any better no matter what we do. The seizures remain elusive even in the face of—or perhaps due to—mounting drugs, and his autistic behavior gets worse and worse but that could be the drug side effects, who knows?  What we do know is that we are trapped.

Friends innocently ask us, “so what did you do this weekend?” I think to myself, what else but what we always do? A whole lot of nothing. Thankfully Michael rescues us from the grind, if only a bit, by his ever-expanding repertoire of delicious home cooked meals or a Sunday drive (as we cross our fingers hoping Calvin will stay calm.) Sometimes we spice things up on the weekend with an exciting trip to the cafe or an action packed visit to the hardware store. Yup, it’s pretty sorry when you get right down to it, an entire family tethered to a life of seizures, drugs, side-effects, doctors, diets, rigid schedules and a seven year old kid who is still in diapers, can’t walk by himself, can’t talk, doesn’t sleep well, screams much of the time, seems oblivious to the world and yet exercises a stubborn refusal to walk, with any semblance of skill, when we need him to.

I don’t believe in hell, but every once in a while I’d swear I was in it. Heaven is waking up, after a solid night's sleep, in a cozy seaside cottage hearing wind chimes, foghorns and songbirds—all by myself.

medical practice

When Calvin started having seizures when he was only two years old, we made countless trips to the emergency room of our local hospital. It quickly became clear that the hospital could not always handle Calvin’s complicated health, particularly since it lacked a pediatric intensive care unit. So, a half dozen times or more, after dangerously prolonged seizures, the Maine Medical Center’s pediatric emergency transport team came to gather Calvin and shuttle him thirty miles to their facility in a special pediatric ambulance.

On one occasion, after a twenty-minute seizure, Calvin landed in a cramped room in that hospital’s emergency department. White coated doctors and nurses buzzed around him taking vital signs and asking me about his medical history. I rattled off the long list of his diagnoses followed by the long list of his medications. Calvin had a fever and a rash all over his body. The attending and resident physicians suspected meningitis. We were told that, to confirm their theory, they were going to perform a spinal tap on Calvin, a painful and risky procedure that could result in paralysis. I feared that that course of action might also trigger another seizure, the kind most feared, the kind that never stops.

As Michael and I were expressing our grave concern about the spinal tap fresh resident and attending physicians took over and discussed Calvin’s case. The attending doc posed thoughtful questions to the intern regarding the nature of Calvin’s rash that might indicate the likelihood of meningitis. They determined that it was not meningitis and, with that, Calvin was spared a dangerous and distressing procedure.

We’ve been up against these types of quandaries time and time again since just before Calvin was born. My husband always reminds me, regarding the nature of the medical field and its infinite uncertainties about cases such as Calvin's, “that’s why they call it a medical practice.”

photo by Michael Kolster

goodnight mom

Last night I tucked my eighty-one year old mom, who has Alzheimer's, into bed. I stroked her fine white hair and hugged and kissed her goodnight:

Me: I love you mom.
Mom: I love you too. I’m so proud of you.
Me: What for?
Mom: I don’t remember what for, but it’s good.

We chuckled, I squeezed her soft hand, switched off the light and, with a very warm, happy and satisfied feeling, closed her door behind me.

Leaving today. I'm going to miss her.

October 2006

brick and flower

My husband Michael and I watch a lot of movies, mostly at home. Not too long ago we saw one about a couple whose four-year-old son had died in an accident. The plot caught us off guard.

Throughout the film I found myself identifying with the grieving mother. I stepped into her shoes click-clacking down the grocery store aisle as she watched another mother argue with her child. I sat behind the wheel of her parked car as she mournfully watched young dapper couples headed to the prom, all neat and shiny and pressed. I saw through her eyes the boys behind the glare of school bus windows sitting straight and confident in their seats. I felt her tears run down my face as she watched happy moments of other parents and their children, her own having been buried with her child.

In a scene with her mother, who mourned the death of an adult son, she asks if the feelings of grief and loss ever go away. "No" her mother says, "but it changes." "How?" she implores, and her mother describes the transformation of grief and loss into something that can be held, carried, like a brick in a pocket that at moments you forget until you reach down in and there it still is. The reminder. The loss. The brick.

I hold a brick in my own pocket, for the things that are lost to me because of Calvin’s circumstances, the things that he can’t do now—ride a bike, talk with his dad, make cookies with me, play with friends, read a story, run in the yard—and for the things Calvin will likely never do—live independently, go to college, have children of his own. This brick is heavy and rough, cold, bulky. But in my other pocket I hold a flower that is forever blooming—that belongs only to me. Its supple petals are the ivory silk of Calvin’s skin and its fragrance is beyond imagination. As time passes this flower changes like a chameleon, becomes more beautiful and interesting over time.  Most of all this flower serves as a reminder of the wonderful gift that is my son, and gracefully—thankfully—balances the weight of the brick.

pain and inspiration

My brother Scott is a world-class Master’s swimmer. He’s in his early fifties still swimming times nearly as good—if not better in some cases—as he did in College. Scott has competed in countless Master’s Nationals, in fact he swam in one last weekend in Phoenix. Over the years he’s broken a few world records in his age group.

Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.

Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.

At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and sobbing. Scott described the event, my father not having been able to attend. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.

My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.

bad things sometimes happen

 Last Friday I boarded a plane headed to San Diego to visit my eighty-one year old mom. She lives there with my brother Matt and his wife. My sister Caron lives about five minutes away with her husband.

When I go on trips like these, which is not often, I sometimes look forward to the journey, to just sit back, relax and think about nothing, do nothing. But that never happens. Instead, I end up with too much room in my head—lag space—and my thoughts seem to always gravitate toward Calvin and what the hell went so wrong. It’s what happened in the Washington Dulles airport as I sat in adjoining vinyl chairs propped up before a huge plate glass window staring out at the painted lines on the tarmac, sitting between strangers. I didn’t care if they saw me cry.

I always ask myself if I swam too hard when I was pregnant. Was that what happened? If only I could roll back time I’d do it differently. He’d have been such an amazingly extraordinary ordinary kid. If only I could see him now, without the mess of a brain—without the seizures—walking, talking, practicing multiplication tables, splashing in the spring’s rain puddles with me.

And then, as a coping mechanism, I remember the email my sister’s friend sent me, the OBGYN who we met in Boston after the shit had hit the fan, who wrote, “Unequivocally—YOU DID NOTHING TO CAUSE THIS PROBLEM. Unfortunately bad things sometimes happen.”

She got that right.

photo by Michael Kolster