seventh spin around the sun

We celebrate our son Calvin's birthday a week from today. It is not in any way remarkable that he is already nearly seven—the years drawn out and somewhat wearisome—noting little change in his development. These long years have often been difficult, though sprinkled too, with joyfulness for the small advances he has made and for his apparent happiness. With each additional spin he makes around the sun, however, we focus and rejoice primarily for the fact that he is still alive.

Lately, I’ve been dreaming about losing Calvin. In a dream last week we were in a large, crowded shopping mall and Calvin simply disappeared. In my panic I worried that we wouldn’t find him amongst the throng of shoppers in time to give him his antiepileptic drugs. This image I feared the most. Then, early this morning Calvin awoke—as usual of late—at 3:30 and did not go back to sleep. In the meantime I catnapped and dreamed, occasionally waking to the dull thump of purposeful head-banging on his crib-side, then I'd temporarily drift off to sleep again. In my dream were three young neighbor boys—though strangers to me. They had come upstairs to visit Calvin in his crib while I was in the adjoining room. After I’d heard the boys leave I entered Calvin’s room. His crib was empty and he was nowhere to be found. The boys denied having seen him. Frantically, I looked everywhere in the house—under the crib, behind the couch, under blankets on a high-back chair—but Calvin had vanished. Then, thankfully, Calvin called to me from his crib and woke me from my anxious nightmare.

This fear of losing Calvin, that follows me into sleep, is difficult to restrain. I know too much about what epilepsy is capable of doing to a child like mine whose seizures are not under control, in spite of the powerful medications he takes to thwart them. I find that writing about it helps channel my adrenaline in a positive direction while at the same time raising awareness about this misunderstood disorder. Many who have read my posts have kindly and lovingly told me that it has enlightened them about epilepsy, that they are more appreciative of what they have and are better parents as a result of living vicariously through my words and photographs. I hope this to be true for many more.

If Calvin’s Story has touched you, and if you are able, please donate to epilepsy research in honor of his seventh spin around the sun. Go to:

http://www.calvinscure.com

Please continue to share Calvin’s story, whether by link or by word of mouth, and help bring us one step closer to a cure. It’s not hard. Just do it one story at a time.

morning madness

We set out this morning to do one of the few “fun” things that we can do with Calvin, which is to visit our favorite coffee shop in the next town over. There was a quiet, early snow adding a dusting on top of several feet already covering the ground in drifts and swaths.

In the car Calvin screamed so loudly that Michael and I couldn’t hold a conversation in the front seats. I am trying to teach Calvin that it is “not nice” to scream and to “settle down.” Perhaps one day it will sink in, but like everything else, it will take months, if not years, to learn.

In the coffee shop, standing between Michael’s supporting knees, Calvin’s shrieking morphed into ceaseless farcical laughter, reducing him to a flaccid noodle, wilting and dropping in a heap on the floor between Michael’s feet. Today, unlike most days, the cafe was fairly empty which only served to accentuate Calvin’s cackling. Sippy- cup, plate, knife and half-eaten toasted onion bagel with cream cheese flipped onto the carpet. We had barely just arrived yet it was already time to go home. I wondered if the antiepileptic drugs were causing Calvin’s crazy behavior. Probably.

Back in the car I swiped Calvin’s shod feet out of his mouth no less than twenty times. I was able to prevent him from yanking his delicate glasses off of his face sideways about half of his dozen attempts, and I dislodged his finger from his eye socket more times than I care to remember.

On the ride home, as Calvin’s screams echoed in my brain, I imagined happy families eating waffles and omelets in red vinyl booths at their favorite diners, sledding down snowy hills in bright plastic saucers, crafting snowmen with stick arms and rock eyes and skating on milky rinks, their reflections beautifully etched by sharp silver blades creating a frosty patina in the ice. I wondered if we would ever get to do these kinds of things with Calvin. Probably not.

something in the water

Sometimes I think there must have been something noxious in the water where I grew up. I came from a family of swimmers and all of my very closest friends and their siblings were swimmers. We passed our long luxurious summer days practicing in, competing in and lounging around a few small outdoor community pools. Our dreary winters were spent waking at 4:30 a.m. and driving in the cold morning darkness to swim a couple of miles in the chilly pool before classes began. The handful of us, all dear to each other, was a tight-knit group of girls who not only swam together but camped and hiked, went to the movies, the mall, the pizza parlor and partied together.

Maybe it’s just a matter of statistics, however, I find it odd how many of these dear friends of mine have had children of their own with significant health issues. One friend’s beloved firstborn daughter had a very severe form of epilepsy and died when she was about fourteen. Another companion had fraternal twins on the day my dad died and the girl was born with a syndrome that prevents her body from manufacturing cholesterol, a key component to development. A third friend in our circle had a beautiful daughter who was stillborn with no apparent problem to point to. My friend and neighbor growing up has two boys with heart defects and still another, a couple of years younger than I, has a seven-year-old daughter with epilepsy. One friend’s older sister had a daughter who died from Leukemia at the age of seven or eight then her son was diagnosed with two brain tumors when he was just five.

So it really seems that there must have been something in the water, like drinking tainted cool-aid. Or perhaps it's true that bad things simply happen to good people—most regrettably—to some very good people indeed.

photo by Michael Kolster

happy camper

So perhaps I bitch a lot and publicly grieve about the struggles I face in raising Calvin. But all in all I’m a pretty happy camper. It’s not clear to me, however, if that sense comes through in my writing, and so I have begun to ponder the question daily when I sit down at my computer to compose, edit and reread my blog posts. 

I am acutely aware that my entries deal with difficult, sad and often painful subject matter. And it’s because of that that I take measures to avoid a monotony of utter blackness while still deeply exploring and describing my memories and emotions, many of which are quite grim.

But besides being happy, I am—and have been since childhood—an eternal optimist and idealist. These characteristics may contribute, at least partly, to the fact that I have survived, and my marriage has thrived, in the face of the less-than-ideal circumstance of having a severely disabled child—despite the fact that I love Calvin to pieces.

As I write this I realize, too, that a few essential elements instrumental to my present happiness, which seems to bob like a buoy atop a violent, dark and unpredictable sea, is my sense of humor and love of a good joke or clever witticism. And, to be completely honest, as many of my closest friends will attest, when it comes to bawdy one-liners, I think I usually take the cake.

So I guess my secret to being a happy camper—which I am glad to share here—is to bitch, grieve, struggle, ponder, write, read, explore, dream, survive, thrive, love, realize, bob, joke and eat plenty of cake.

fetal mri

Calvin’s first MRI was in utero. We were about thirty-three weeks along.

Michael and I had learned the previous week, from an insensitive witch (doctor), that the lateral ventricles in our baby’s brain were enlarged. We ignored the docs advice to come back in two weeks by opting never to see her again. By good fortune, we came across a study of the diagnosed condition—ventriculomegaly—underway at a Boston hospital.

The events in the hospital were a blur, shuffling between obstetricians, neonatologists, neurologists and radiologists while running blood tests, genetic screenings, and sonograms. Near the end of the day, exhausted and fraught with worry, the only test left was a fetal MRI. Michael and I sat holding hands on teal fabric chairs amongst fake plants, and painfully awaited our turn. I felt alone and frightened, trying to hold back my tears of trepidation. I knew Michael felt the same.

Finally, I was lead to a changing-room to disrobe for the procedure. The stark space had bare plywood walls, a single hook on which to hang clothes and a cheap mirror fastened slightly askew on the back of the door. Against one wall were stacks of clean folded “johnnies”. I stripped down, shivering, not so much from cold as from fear and fatigue. Standing naked in front of the mirror I regarded my taut round belly and wondered how and when it all went so wrong. I was so afraid—afraid of what I knew about my precious child’s brain, and afraid of the unknown. Slumped in sorrow, my unwashed hair hanging in strings before my face, I feebly chose a pale printed johnny. Surprised and dispirited by it’s weightlessness, I found each gaping one-size-fits-all armhole and positioned the opening in front as I had been advised. The flimsy gown could have wrapped around me nearly twice if not for Calvin.  For a moment I stood trembling beneath the thin garment, which fell at my shins revealing shoeless feet. I had never felt so vulnerable in all my life, and in the mirror’s reflection I watched my screwed-up face start to sob uncontrollably.

Michael appeared and I gave him my wedding band—metal cannot be worn inside the powerful magnet. He escorted me to the imaging room, kissed me and returned to the waiting area. The technician laid me down on the conveyor and strapped me in good, feet first, on my back. With a push of a button I was slowly inserted into the massive, white hollow tube. It was a much narrower opening than I had imagined and I felt as if my pregnant belly might graze the cylinder as I passed through. The technician exited the room and left me alone, except for Calvin. A voice spoke to me over an intercom from the darkened side of a large window giving me instructions as to when to hold my breath for the making of the images. Deep, guttural sounds and jolting buzzes, like no other sounds I had heard before, bellowed from the machine's bowels. The noises were freakish, futuristic and jarring, contributing to the whole surreal experience. But somehow, knowing that Calvin was with me—inside me—and we were going through it together, gave me a sense of calm. I kept telling him that everything was going to be okay and not to be afraid and he seemed to be doing the same for me.

After an hour or so I emerged from the white monstrosity that had swallowed me whole. Now all we had to do—which was no easy job—was to wait for the results and find out what needed to happen next.

ventriculomegaly

aftershocks

As I left the house with my girlfriend last night I sighted brilliant Orion in the stark sable sky. He loomed low and large, his powerful legs grazing the tops of the giant pitch-black pines. I shrugged my shoulders against the near-zero cutting darkness, and I wondered if tonight Orion would watch over and protect my son.

I had spent the day with melancholy. It comes over me sometimes, and when it does I ponder what went wrong during my healthy pregnancy that caused my sweet boy to be so severely disabled. I grieve over the loss of moments that I still dream about such as chasing Calvin barefoot in the backyard, frolicking amongst warm ocean waves, messing our faces with dripping ice cream off of sweet sugar cones, skating hand-in-hand on a makeshift rink—our scarves sailing at our backs—or drawing sunny pastel pictures for each other that say “I love you.”

Later I came home, crawled into bed and drifted off, my melancholy dulled by chatter with old friends over crimson pomegranate margaritas and then dissolving into the nothingness of sleep. But at three-thirty I was bluntly awoken by the familiar sound of Calvin’s seizure cry.

I cannot adequately describe the helpless feeling of watching my innocent child endure a three or four minute seizure during which I can only stand by and wait. Any words of consolation I can utter are as much for myself as for my Calvin—who is deaf to them—lost in the seizure’s oblivion.

In bed with me after the seizure, Calvin’s aftershocks—the shudders, jerks and trembling—cause him to writhe. I startle as choking sounds come forth from his little throat. I hold stone still and alert in the dark for fear he’ll roll into another seizure. But he doesn’t, and finally his soft body calms and surrenders to sleep, with his thumb in his mouth, my hand on his hip and the other clutching his delicate, cool feet. 

Lying there in the warm bed next to Calvin I experience my own aftershocks. My day’s companion— melancholy—returns to visit bringing despair and emptiness, a reminder of the infinite losses I endure, and a hopeless question of ever being released from this sad, mundane, crippled existence.

Please donate to epilepsy research at:

http://www.calvinscure.com

day sixteen

Today is day sixteen, meaning it has been sixteen days since Calvin’s last observed seizure. I say “observed” because I wonder if perhaps I sleep through them once in a while, even though I have the baby monitor on high, blasting out its nasty hissing white noise. Michael assures me that I have not missed any.

The last time Calvin went sixteen days between seizures was in August of 2009, so we are hoping that we might have found a second drug, after six that essentially failed, that could help prevent his seizures. It looks promising since he’s had a cold for the last week and he has never, in my memory, had a cold without also having at least one seizure. We still have a long way to go before we can be certain and, like everything in life, there are no guarantees.

I spoke with another mother the other day about her child’s seizures. Her son, who is probably around three years old, has had some luck with the same drug—in addition to a special diet and one or two other drugs. She seemed pleased to tell me that he was only having twenty seizures a day instead of forty. I, too, was happy for them, because I know that any improvement is a welcome one.

I remember, when I was first researching epilepsy, speaking with my friend, whose child was cured by using the Ketogenic diet. Prior to the diet his son had been having hundreds of seizures every day, even though he was on several debilitating drugs.

So, day sixteen feels pretty good in the scheme of things, but, to be honest, I’d prefer not to be counting at all.

To donate to epilepsy research go to:

http://www.calvinscure.com/

be a superhero

Calvin is my superhero and he has touched my life in innumerable ways. I hope Calvin’s story has touched others’ lives as well. I believe it has. And those whose lives have been touched can be a superhero, too.

Whether we are aware of it or not, little Calvin is not the only person we know with epilepsy, which for most people, once they are diagnosed, is a life sentence and for 50,000 Americans each year is a death sentence.

Epilepsy’s incidence is increasing—unlike other diseases, which are declining due to early detection, prevention or treatments that can cure—because populations at greater risk of epilepsy such as premature babies, people with autism, people with Alzheimer’s and our troops who suffer traumatic brain injury, are on the increase.

Epilepsy does not discriminate. More Americans live with epilepsy—and die each year from epilepsy and related causes, such as head injury or drowning—than breast cancer, yet sadly, many of them are our children.

Epilepsy affects three million Americans—about one in one hundred—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

About one-third of the number of Americans with epilepsy have Parkinson’s disease yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the funding from the government and at least ten times the funding from private entities compared with epilepsy.

People with epilepsy suffer debilitating and sometimes lethal seizures and/or horrific side effects from medication.

If Calvin’s story has touched you, be a superhero by donating to epilepsy research now. It matters. Go to:

http://www.calvinscure.com/

Please help raise epilepsy awareness by sharing Calvin’s story and the link to this blog with your friends, family and colleagues. It’s not hard. Just do it one story at a time.

riding bikes

When I was a little girl I lived at the end of a long, sloping gravel road so I didn’t learn how to ride a bicycle until I was seven—no flat tarmac to roll along.

One day I asked my mom if she wanted to go for a bike ride in the nearby paved neighborhood, even though I had never seen her on a bike. But, delighted with the surprise invitation from her littlest of six, she happily agreed, so we grabbed our bikes and pushed them up the rocky road, then mounted them and sailed off down the quiet, shaded street.

After we had ridden a few blocks we turned right to coast downhill between the modest pastel homes, each with its small grassy front yard apron. Warm wind fingered through our hair, hers short brown and slightly quaffed and mine straight, long and thin, shiny and golden. Her white and red printed smock ruffled at her sides like a Spanish dancer in a drifting current. I closed my eyes and let go for a few seconds, sopping up sun rays on my thin tan arms. Clear tick-ticking of the freewheel offset the flat humming of our four wide, slightly deflated tires rubbing against the hot pavement. I glanced back at my mom, so fair, plump and pretty, and she smiled. I smiled back. It was a perfect moment.

We leisurely passed a house where a friend was bouncing a basketball in her driveway. The girl called out to ask if I wanted to play. I looked at my mom questioningly and she just replied “okay” and continued on peddling around the square block for home. As she rode away out of sight I felt empty, sad and lonely. We never got to ride bikes together again.

girlfriends

I hope some day I can testify before congress. I think I will.

I remember a day when Calvin was only fifteen months old, back before his epilepsy diagnosis and when we used to travel with him frequently. We were visiting friends in Seattle, and we were sharing a downstairs guest room in their house. Calvin had spent a good part of the night crying and none of us got any sleep.

The next day I was meant to join my two girlfriends, one old and one new, to attend a neighborhood auction. It was May, the weather was gloriously warm and all of the rhododendrons and colorful flowering trees were in full bloom.

My girlfriends were outside on the sloping sidewalk waiting for me while I was trying, in vain, to put Calvin down for a nap. But all he did was cry and cry and cry in what seemed like great pain. Sleep deprived and jet lagged beyond measure, every sorry detail of my demanding existence as Calvin’s mother was magnified, keeping me in a persistent state of emotional fragility. The stress of the cross-country trip, the incessant crying, worry for Calvin and lack of sleep brought me down—hard.

As I finally closed the front door behind me having kissed Michael goodbye, I stumbled down the front steps to join my friends. At seeing their concerned faces I broke down sobbing like I had never done in my life. With my friends flanking me, holding my elbows to support my collapsing body, we walked slowly step by step, as I shuddered and shook, releasing the weight of my world onto their shoulders. They listened.

Four or five blocks later, snot and tears streaming down my face, I began to gain some composure, but only after hundreds of kind words of compassion and love were showered over me by my friends.

My childhood friend told me how she thought that one day I’d be turning all of this grief and strife into positive action, that some day she thought I’d be testifying before congress urging them to help children like mine. We all laughed at what seemed unfathomable at the time, but her words not only planted a seed in my brain, they lifted my head up so I could see the sun that was shining down on me that beautiful spring day.

aid of others

Recently Michael and I watched the 1946 film “The Best Years of Our Lives.” A beautiful black and white classic, it tells the story of three World War II veterans returning home from battle after their long deployment.

One of the soldiers, handsome young Homer, had both of his hands burned off while overseas. Each had been replaced by curved steel hooks, which he employed with great mastery, even striking a single match to light a cigarette.

The film beautifully explores loss, grief, desire, and transformation in a series of poignant scenes. One that deeply moved me was with Homer and his father. After supper, Homer goes upstairs to ready himself for bed. He takes off his coat then somberly calls down to his father saying something akin to “I’m ready, Pop.” Momentarily, his father enters the boy’s room and, in silence, helps Homer take off the leather harness supporting his prosthetic arms. He lays the hooked devices aside then assists his grown son into a pajama top. Homer, barely a man, swallows his pride, keeps his chin up and his eyes averted while his father slowly buttons up the front of his nightshirt. The intermingling of shame, pity, love, helplessness and gratitude are palpable, as the viewer understands that Homer is destined to rely on the aid of others to do simple and intimate things.

Often, when I help my six-year-old son Calvin with dressing, my heart floods with these same emotions and my mind these same thoughts. Though I feel no shame, I am immensely sorrowful of the great challenges Calvin faces in doing the simplest of tasks. As an example, when I put his shirt over his head Calvin can pull it down over his face but then he needs help putting his arms through the holes. He seems to be improving on these skills—albeit slowly—and for that I am grateful, though I worry one day his development will plateau, or worse yet and because of his epilepsy, regress.

Loving Calvin with the depth of my soul I would do anything for him, but that doesn’t stave off feelings of helplessness—that no matter what I do and no matter how many hours we toil at any given task—that Calvin will likely remain in a place where he too, will be reliant on others to provide for his most basic needs. And at night, when my emotions run at their highest, comes a paralyzing dread as debilitating as any, which is my fear of the future and the great unknown it harbors, if perchance I can no longer be there for my boy.

But like the young soldier, my Calvin is loved beyond measure by those closest to him, and so will receive succor even in my absence. And perhaps too, as Homer did for his loved ones, Calvin can inspirit others to undergo a transformation toward selflessness, similar to that of my own.  By seeing Calvin’s desire to succeed in the face of great adversity, always exuding a most pure and humble spirit, I aspire to gain patience, appreciation and acceptance, not only for those who need help but for those who selflessly give of their own.

screaming

Okay, so Calvin is sweet, soft and mild. But I guess, like any kid, he's also a little monster at times. I often wonder how long can I take his screaming.

Calvin's screaming echoes so loudly I can practically feel my eyeballs rattle. I can’t hear myself think much less hear what anyone else has to say. And there’s really no stopping it because, either Calvin doesn't understand my pleas or, more likely, he can't control himself. The screaming mostly comes when he is lying on the changing table, in his car seat, or in the grocery cart. Recently, it has started happening in the johnny-jump-up, too. I have no idea if his screams are the product of painful gas, excitement, irritability, discomfort, frustration, seizures or drug side effects. Perhaps it's even some sort of seizure activity in and of itself. My gut tells me, however, that it's the damn drugs. But whatever it is, it is unsettling to say the least. After a day of it I'm exhausted, as if I've been battered by gusty, gale force winds for hours.

Sometimes Calvin’s screams are ear-piercingly clear, high notes that soar and dip like an operatic soprano. Other times he yells coarsely, as if being accosted, and I wonder if some sort of apparition is causing his outrageous howling. Still other times he scrunches his face into an elfin grimace, his teeth clenched and lips peeled back like a vicious dog in a corner, and he unleashes a dreadful medley of screeches that have no right coming from a kid so sweet, soft and mild. A few things can stop it—if only for a moment—the most reliable being a bout of tickle-kisses. And so, as one might expect, I begrudgingly abide with this remedy, and my little terror, my mini monstrous Mr. Hyde, instantaneously becomes sweet Dr. Jekyll until, of course, I stop.

So for now, at least, and as long as Calvin suffers seizures and has to take powerful mind-altering meds, we'll have to put up with his screaming and insert healthy doses of doting antidote, and too, as one might expect by now, the occasional F-bomb.

sweet, soft and mild

My boy Calvin can't talk. He's almost seven but he can't utter a word. He does a good job vocalizing, humming and screaming but the closest thing to a word is his "uh-uh" which I believe stands for "mama." In my mind our physical relationship makes up some for the lack of word exchange between us. In that way our relationship is a lot like the one that I had with my dad, who was a man of few words at times.

When I was a kid my dad would often give me hugs or tussle my hair. He'd carry me on his shoulders way up high and I'd sit on his lap. Sometimes we'd walk hand-in-hand. He relished tickling me, especially right under my chin because he knew it drove me into hysterics. At night, after my bath, he'd lovingly and most vigorously dry my hair with the towel, and if my legs ached from growing pains, he'd massage my small calves. And, like with all of my siblings, we'd have healthy bouts of wrestling until we were both exhausted and red in the face. He always won.

I don't wrestle with Calvin, but otherwise our physical closeness is very much the one I had as a kid. There is so much joy and reward touching the child that was once inside me. And more so because Calvin happens to be the softest, mildest kid in the whole wide world. Really.

Calvin's skin is supple like those fresh rice-dough dumplings surrounding that sweet egg yolk center. It's as velvety as the cream off the top of raw milk, a steaming double breve or a warm Guinness stout. It feels like cashmere or angora in that color they call champagne, all creamy-beige like you just want to dive into it. And too, Calvin's spirit is the sweetest note Itzhak Perlman ever played on a Stradivarius violin. To soundly nap next to Calvin is akin to hearing Ella Fitzgerald croon while soaking in a warm milk bath with faint vanilla candles casting liquid gold light on velvet walls. Calvin is that soft and mild. Really. Inside and out.

And so, although Calvin and I can't talk with each other or know each other's dreams, we can exchange simple pleasures much like I did with my dad, through warm luxurious embraces, holding hands or delighting in our very own tickle-fest, which neither of us can get enough of.

mortality

The other night I got Calvin ready for bed, something that Michael usually does. I had him sitting up on the changing table to take off his robe and slippers. He reached for me, put his arms around my neck and pulled me into a tight embrace, then he gave me a rare kiss on the nose—a nice long one. At that moment I became sorely aware of a familiar, weighty feeling that it could be the last time I’d be saying goodnight to my sweet boy, and to treasure the moment.

The next day I read about a new study that has determined that the mortality rate in individuals with childhood onset epilepsy, such as Calvin, is three times higher than once expected, at 24%. Two factors that play a major role in contributing to the high mortality rate are the lack of seizure control (referred to as medically refractory or intractable epilepsy) and the presence of remote symptomatic cause of epilepsy (i.e. major neurological injury or insult as a cause of epilepsy).

Unfortunately Calvin’s epilepsy is intractable. He’s tried eight antiepileptic drugs and two vigorous diets in the nearly five years since his diagnosis and his seizures continue to be reliable. Because Calvin was born with significant neurological complications of unknown origin, causing cerebral palsy, global developmental delay, low muscle tone and visual impairments—to name a few—it is difficult to know with certainty if his seizures are the result of neurological injury. The medical consensus has been that the absence of white matter in Calvin's brain appears to be a developmental blip rather than the result of trauma in utero. I begin to wonder, however, if the scores of lengthy seizures, several upwards of twenty minutes and as long as forty-five, plus an extended four-hour period of seizure activity, has caused further devastation to Calvin's brain and thus contributed to his ongoing seizure disorder.

The other surprising and unsettling finding in this new study is the high SUDEP (Sudden Death from Epilepsy) rate. Ten percent of the individuals in the study group died of SUDEP during the follow-up period, but SUDEP accounted, substantially, for 40%—nearly half—of all deaths combined.

Before Calvin was diagnosed with epilepsy I thought it was a benign disorder for which one simply takes a pill and all is fine. I soon learned that it’s not—not even close. And until we can find a cure I’ll continue to lose sleep over my precious, irreplaceable, little boy, Calvin, and at night I'll always wonder if he’ll wake up the next morning.

For more information about SUDEP please see:

SUDEP
SUDEP Facts

losing kin

As if the recent deaths in Tucson didn't allow me sufficient reflection on losing kin, a very dear friend, whom I’ve known for almost twenty years, called me this week to tell me that her younger brother had died—her only sibling and the last of her blood relatives. Her words were almost imperceptible through sobs and shuddered breaths, which I have heard from her only once before.

I met my friend during a fire alarm in our downtown San Francisco apartment building. Our small studios, complete with cockroaches and Murphy beds, shared a wall. At the piercing sound we both peeked out of our doors wearing robes and slippers and said simultaneously, “do you think we need to leave?” then we laughed at ourselves and headed downstairs out onto the cold, dark street in our housecoats. "Pretty," we said, and laughed again. It was the beginning of a long and adventuresome friendship.

Later, we traded in our cramped studios for a large dreamy Victorian flat where we shared a multitude of good times and a few bad. While we were roommates my father died after a long battle with Cancer. My friend was lovely, and helped me get through my grief. She spent countless evenings sitting with me in front of the fire on an ivory Flokati rug drinking wine, telling stories and staring into the glowing flames. Even though she didn't know what it was like when a parent died, she still knew what to say. For a time we were inseparable.

A few years passed then she moved to the East Bay. Her mother had fallen ill with another form of the same wretched disease—cancer. She watched her mom, who was only in her fifties, waste away in a nursing home while she tirelessly kept vigil every day after work. To this day I regret that I wasn’t really there for her like she had been for me.

And so now she finds herself alone. No mother’s bosom on which to cry, and no brother to lean on or shoot the shit with over the phone. Her distant adoptive father, who she hasn’t lived with since she was nine, is two thousand miles away. She’s really on her own now, at least when it comes to kin. Her loss causes me to think, once again, about losing Calvin or about him being left alone in the world without a father, mother or siblings. Those thoughts, in turn, compound the sadness that I feel for her.

But this friend of mine, whether she knows it or not, has extraordinary tenacity. She is lithe but has Amazon strength, a bright beautiful face always looking toward the sky, and the ability to overcome any obstacle that impedes her. And, too, she has friends—loyal, longstanding, compassionate friends—friends who love her as much as family. I tell her that she will get through this. I will tell her everything that she told me when my dad died. I will tell her that I will be there for her this time. I will tell her often that I love her, and that she will survive.

flowers for my friend

dear scott

From: Christy Shake
Sent: Monday, January 30, 2006 9:06 AM
To: Scott Shake
Subject: call

dear scott,

thanks for the call. sorry i could not talk long and it was a little
crazy at our house. the eating thing continues to be a MAJOR source of
stress and frustration for us. now calvin pushes most of the food we
feed him out of his mouth. the doctor thinks it is because he wants to
be more independent and participatory in the feeding process. all well
and good but the kid can’t hold food very well in his hands and when he does get it to his mouth, sometimes he chews it but then he pushes it out rather
than swallowing it. sometimes i am not sure how much more of this i can
take. everything takes soooooooooooooooooo loooooooooooooong with him,
it is unbelievable. been working on the crawling thing since may and he
has made very little progress, but at least he has progressed. pretty
much everything takes about 20+ times longer for him than for other
kids. if we project, and if his developmental gap continues to widen,
as it is, he may only make it to about a five year old level by the
time he is an adult, if that. oh scott, it scares me to death. it has
been so hard on us. the future (and present) seem so utterly bleak for us as a family.

sorry to unload this on you at work, but i can't help it and i just
want you to know how i feel.

i love you so much,
christy

infinite loop

One very cold night several weeks ago, while brushing my teeth, I was blankly regarding the surfaces in our bathroom, as one does in a crowded elevator, just passing the time as minty foam filled my mouth. I noticed some cracks in the thick paint on the back of the door, too many brown dog hairs littering the white tile floor and a speckled red ladybug crawling on the wall just above the sink.

The next day while I was taking a shower there she was again, tracing circles on what seemed to me an expansive plane for such a tiny creature. The bug trekked in a crescent, stopped for a second then resumed only to end up in the same place she had started on the flat, sweating wall. After a brief rest she repeated her loop a second and third time. The next day I found her upside down on the window sill.

This helpless, lost bug reminded me of Calvin and the infinite loops he seems to be making. These loops consist of large, concentric circles, the outer describing his development and activity over the course of years and the inner more literally characterizing his behavior in a given moment.

Calvin, who is almost seven, is engaging in virtually the same things as when he was three. He still loves playing with the wooden shutters in the bathroom, his passion for banging the kitchen cupboard doors has not waned and he continues to delight in bouncing and spinning in his industrial strength johnny-jump-up.

His inner loop is more literal. For instance, when Calvin is playing in the bathroom he rattles and mouths the shutters for a spell, turns and bangs on the toilet lid like a drum (we keep it down), triangulates to the sink and yanks on the edge as if it will open like the freezer, then pivots back to the shutters to start the cycle over again. Calvin will delight and engage in this repetitive cycle for a while, not unlike the ladybug on the wall, getting nowhere.

But, we indulge Calvin in his whims and fetishes in spite of its monotony because, after all, he is practicing his balance and coordination and he greatly enjoys these antics. And in our boredom and tedium, it gives us a chance to daydream and perhaps to discover and study beautiful things like ladybugs.

i wonder

I find myself in a constant state of curiosity about our funny little kid. He’s a mystery to me, and so I wonder about a myriad of things.

I wonder if Calvin will ever master the fine art of feeding himself. I still spoon-feed him a lot, at least for now, though we practice all the time. He’s got the skill halfway down, but he’s stuck, unable to put the spoon back in the bowl to get more. I wonder if Calvin will ever be toilet-trained so that we can do away with diapers. I wonder if he will be able to dress himself one day, but that probably requires decent balance and coordination, which he doesn’t have, though he is improving. I wonder if Calvin will ever be able to get in and out of his car seat without help. I wonder if he’ll be able to brush his teeth, wash his hands or brush his crazy, thick, sometimes dreaded head of hair by himself. I wonder if he will be able to put on his socks and shoes, play with toys, ride a trike or run around naked in the grass.

Mostly, I wonder if Calvin will ever be able to utter words to tell us his most basic needs or if something hurts, and where. But wondering leaves me no better off than to simply love and nurture and encourage Calvin in everything he does.

Two things I don’t wonder about, however, are his constant seizures and the drug side effects, because I know they are his biggest adversaries without which he’d probably be doing a lot of the things that I find myself wondering if he will ever do. Calvin so desperately needs a cure.

Please share Calvin’s story with your friends and 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

a new day

Yesterday, leaden clouds relentlessly unhanded curtains of blinding snow conjuring ghostly white phantoms that obscured any desired path forward. Today, a milder breeze has replaced the viscous blizzard with its rugged, icy winds and instead gently sways stately maples and pines and quivering naked stems. The heavy snow that formed impassable drifts, smothered everything that was green, and kept us huddled inside to ourselves, is melting off to reveal scads of jubilant buds. And while the air is still chilled the low winter sun radiates from a promising azure sky.

Today the house is basking in sunbeams as drops of water slide off the tips of crystal icicles. Hardwood planks creak and expand slightly from the warmth of rays shining through large southern panes flooding the rooms with brilliant light that extends beyond the glass doors and windows to the snowy banks outside.

Unlike yesterday, today seems filled with opportunity, a chance to open my eyes—as if for the first time—and look to the sky, to get outside and breathe the fresh air, to stretch my limbs as wide as they can reach. Today I am mindful of how fortunate I am to be alive, to simply greet my son Calvin when the bus brings him home from school, and to say thank you and farewell to his driver and caregivers. I will dwell in the sheer delight that Calvin brings me with his animated smiles and quirky gestures, which visibly expresses his happiness to be home once again.

Yes, today is a new day, and tomorrow another.

inextricably linked

I’ve been losing sleep again lately. Because of Calvin's restlessness, from either the seizures or the drugs, he's been waking nearly every hour from midnight on. Usually I fall right back to sleep and dream. But last night my thoughts were twirling and drifting, like so many shining minnows in a shifting current, darting to and fro. Glinting images of Roxanna’s young daughter, the most innocent of bystanders gunned down last Saturday in Tucson, bathed my mind.

In the darkness of our bedroom, a streetlight’s dim golden stencil cast on one wall, I imagined Roxanna and asked myself if she, too, was wide awake envisioning her beautiful girl. I wondered how many scores of thousands of mothers and fathers, their dreams interrupted, might also be reflecting on the same tragic events, contemplating the significance of their own lives, their childrens' lives and what it might all mean. My brother, who lives in Tucson with his wife and young daughter, is most definitely moved by the tragedy—not long ago having planned a business lunch with Christina-Taylor’s father. In my traveling thoughts I marveled at the interconnectedness of things, of the slight degrees of separation that link us all to each other—like the infinite sparkling stars adorning the sky—and that now have fused us to this horrific event and to the luminous spirit of one little girl.

It is shockingly evident that Roxanna’s life has been transformed by the sudden and brutal loss of her daughter. So, too, has my own life, the lives of her loved ones, of their friends, of the nation’s people, the world’s masses and perhaps the universe. In the blink of an eye my own existence, and what I know to be true, has been pierced and splayed open to reveal a raw interior. But now I can see into this lesion, and if I look closely perchance I can pluck out some poisonous dart, toxic hate or bitter malice that may have sometime rooted there.

My own child Calvin, like Christina-Taylor Green, through his purity and innocence, his lack of bitter spite, has taught me profound lessons about the simplicity of love and kindness. It seems this mournful incident might also serve as a reminder and underscore the import of showing compassion and empathy for those to whom we are so inextricably linked.

So at night, perhaps we can dream sweetly under our shared canopy of stars and planets and infinite beautiful things.

National Geographic

roxanna's gem

Last night I opened an email from my dear Californian friend. Yesterday, she had read my blog post titled hold fast about two of the victims in the massacre at an Arizona grocer’s parking lot. She told me that the little girl who was shot and killed at the Congresswoman’s meet-and-greet was her childhood friend’s daughter. While reading these words my heart sunk deeply and my body began to shiver—so close to home now.

I replayed the news video of the girl’s parents recounting their daughter’s life and interests. Sure enough, there was Roxanna, who I had met years before, speaking with such grace and balance, describing her daughter, her precious, her gem.

Roxanna and I had been bridesmaids in my friend’s Valentine’s Day wedding over a decade ago. We had spent the morning having our hair done up in beautiful, shining, sprayed curls that looped like petals of a chrysanthemum—the bride’s yellow, mine auburn and Roxanna’s deep ebony. We helped primp the bride, cracked jokes, sipped water, and perhaps some bubbly, from clear plastic cups amid hot radiant bulbs of the peach-painted mirrored vanity. We stepped into our satiny champagne-colored gowns—sleek, strappy and backless—and then helped our friend fasten her bodice, her lovely bare shoulders glowing above an exquisite décolletage. She was a dream to behold—a knockout—the perfect bride in her simple elegant alabaster gown clutching a tight bouquet of flawless white rosebuds. The image of our trio, three pastel painted lilies, gorgeous and giggling in the happy nuptials of our dear friend, and softly etched in my mind now comes into sharp focus.

In years to come we would all be wed and have children of our own to love. My friend has a lovely daughter and son—a fiery fashionista and a little athlete. I have my sweet Calvin who fills my days with joy and sorrow. Roxanna has a son of her own, but her precious nine-year-old daughter, Christina-Taylor, has just been taken away.

What would she have become, Christina-Taylor, who favored her mother’s refined features, poise, and rich shining brunette hair? Whose lives would she have touched beyond the many she has thus graced? How would the world be different with her in it, this incredible child with the empathy, compassion and wisdom of a sage? Having never met her—Roxanna’s beautiful gem—I miss her.

Christina-Taylor Green

hold fast

Snow was falling silently when the grim news came.
Woman shot, six others dead—
one child.
Tears of sorrow filled our eyes.

Hold fast.

She, younger than I, is lost in a coma.
Lost to her children, lost to her husband,
suspended in some cold inner space
we can never know, nor would want to.
They try to embrace but cannot reach her, not now.
She is somewhere else.

Hold fast.

What about the girl?
Her happy presence replaced by emptiness–
silent and desolate.
A hollowness in her mother and
father’s palms—in the core of their beings.
Memories endure of stroking her lovely
chestnut hair, of her smile,
of tenderly cupping her face in their hands.
Echoes of her sweet voice remain.

Hold fast.

I have my spouse and I have my child,
all touching in our own warm bed,
with my arms wrapped around my boy,
his around my neck, our hearts answering each others'.
His sweet breath brushes my face,
his supple legs curl up as
little feet knead my belly.

I Hold fast.

constant current

At two-thirty this morning I awoke to the familiar sound of Calvin rocking and rubbing his head in his hands. When I got to his crib he sat bolt upright, as if possessed, then flattened himself into the pillow again. I turned him onto his back, cupped his head in my hand and gave him some water from the bottle kept at his bedside. He drank it with an unusual and worrisome fervor then threw his head back in a whiplash. With a cool hand I caressed his forehead, then flipped him to his side and covered him up. Twice more this happened. As I crawled back into bed for the third time I told Michael that Calvin was acting strangely. Just then, already kneeling, Calvin started banging on the side of his padded crib—protective wool blankets, fleece throws and quilts lining its walls. This time Michael got up and laid him back down.

An hour later I awoke. Outside, the dissonant groan of metal plows against snow-covered asphalt fractured the frosty silence. I heard what I thought was the tick-tick-tick of Calvin’s thumb against his teeth, one of his self-stimming behaviors. At that point Rudy came upstairs, his black claws tapping and scratching the wood. I wondered if he knew what was going to occur.

Just as I was about to look in on Calvin again, he let out the squeal that begins his seizures. We rushed to his crib and I checked the clock. More convulsive than usual, Calvin's eyes fluttered and darted while the rest of his body pulsed wildly with electric shocks. A minute and a half passed and his convulsions began to dampen. Two minutes passed and the regular spasms became errant, jerky tremors. Approaching three minutes, his eyes still large and vacant, I waved a hand in front of them and he flinched, but my Calvin was still in another world, chewing and swallowing in the odd manner of some seizures. I couldn’t tell when the seizure was over, his body still strangely writhing and rippling with quivers, but we lifted him out and brought him into our bed.

For almost an hour a constant current of shudders and shivers flowed through his body as if he were frightfully chilled. We hadn’t seen these vigorous aftershocks in years. I feared Calvin would roll right into another seizure, the kind that is big, fat and mean, with tsunami force that nothing can stop, laying waste in its savage path. But Calvin’s nemesis yielded to sleep as delicate white flakes of snow passed by our windows and blanketed the frozen ground.

keto kid - part three

Continued from yesterday

In spring of 2009 Calvin had been on the rigorous Ketogenic diet for over a year, plus three antiepileptic drugs, and was still suffering about a dozen grand mal, tonic-clonic, seizures every month.

In an effort to free him from his drug and diet induced zombie-like state we decided it was imperative to get him off of one of his seizure drugs. Unfortunately, the chosen drug, a benzodiazepine, had become addictive and although we incrementally reduced his dose by an eighth of a pill bi-weekly—cutting them on a mirror with a razor blade—Calvin still suffered withdrawal seizures. That summer Calvin had long convulsive seizures, on average, every day and a half. I found it difficult to relax, fearing seizures in the bath, at night, in his high chair, in his johnny-jump-up, in the car—anytime, anywhere.

To add insult to injury Calvin virtually stopped eating everything but yogurt. Most days he skipped at least one meal. Often he'd eat only a portion of the precisely weighed ketogenic meal leaving me to worry about the delicate ratio of fat to protein and carbohydrates required. And though the diet hadn't seemed to help his seizures I was still concerned that an inexact ratio would worsen them. Over the course of a couple months Calvin lost five pounds.

Because Calvin was often refusing to eat it became difficult to give him his seizure medicine which we masked in yogurt. We were left no choice but to lay him down on the couch, drop the thin wafer-type pill and the four tiny square-ish ones on the back of his tongue and chase them with a syringe of water. The capsules I opened, sprinkled their powdery contents into water until dissolved and syringed the solution into his mouth. He held this tincture with pursed lips for as long as ninety minutes while we sat beside him—on edge—encouraging him to swallow and hoping the medicine wouldn’t dribble out of his mouth.

During all of this we had a few long conversations with Calvin’s neurology team. Four different antiepileptic drugs were recommended as new options to reduce his seizures. One drug claimed a high incidence of fatal aplastic anemia, a second was known to cause significant cognitive blunting, a third was new to the market so its long-term side effects were unknown and the fourth was a cousin of the drug Calvin was coming off of. In the end, after closely weighing risks and benefits, we opted for the latter hoping that it might also help Calvin’s weaning process since he’d essentially be getting a hair of the dog that bit him. The additional drug meant giving him four antiepileptic drugs at once.

The month after starting the new drug, however, Calvin had only one seizure and regained some of his appetite, although it had become clear that the the Ketogenic diet—the only real chance for a cure—had failed him and indeed was affecting his well being. So after twenty months of being on the diet we started the slow process of weaning him off of it, as well as all three of his older meds. He remains on a modified version of the diet at a level that has allowed him to gain back his weight, stamina, strength, enthusiasm and smiles. But, without a cure in sight, Calvin still suffers the curse of both the seizures and drug side effects.

Please share Calvin's story with others and help bring us one step closer to a cure. It's not hard, just do it one story at a time.

Calvin holding medicine in his mouth

keto kid – part two

Continued from yesterday

After Calvin's three-day initiation to the Ketogenic diet at Mass General Hospital we headed back to Maine equipped with a gram scale, a glossy white three-ring binder complete with a "no carbohydrate" cheat sheet, a list of specific allowable food brands and a dozen pre-calculated menus plus prescriptions for two additional medicines required to prevent some undesirable side effects of the diet.

Some who I told about the diet responded by saying “I wish I could go on a high fat diet!” They changed their minds when I informed them that Calvin wasn’t eating potato chips and ice cream but rather copious amounts of mayonnaise, oils, heavy cream, no sugar, little protein and negligible carbohydrates.

Although Calvin adhered to the rigorous diet, he never enjoyed a decrease in seizures, as do two-thirds of kids who try it. He did, however, become far less irritable. Prior to starting the diet Calvin cried a lot. Every morning he’d cry for an hour and a half. He was so miserable we had no choice but to hold him—which only slightly dampened his anguish—while wondering what wretchedness was plaguing him. The one calming solution was to swaddle him in a blanket, Michael and I holding the ends like a makeshift hammock, and swing him back and forth. As soon as we stopped, however, his misery returned, so we held him and rocked him most of the morning—nearly every morning. The same was true upon waking from his naps.

Years of his reliable and incessant crying was emotionally punishing, carving deep gashes into my already eroding psyche. I dreaded it and it hurt me to see him so upset, not knowing why nor what to do beyond bringing him to a number of different specialists in hopes of unlocking the mystery. At the same time I optimistically wished it away, but the crying became more burdensome to me, in its woeful relentlessness, than his seizures. The Ketogenic diet changed all that, and then some.

In tandem with Calvin's decreased irritability came apathy, lethargy and stupor. Calvin’s new found skills, crawling up the stairs, getting into standing from the middle of the floor and exploring the house, mostly vanished as his core strength withered and reduced him to the likes of an expressionless rag doll—except when he had his seizures.

Eventually, after three months on the diet, we tested Calvin’s blood. Although his antiepileptic drug doses had not changed, the levels in his blood had surged; he was metabolizing the meds differently and hence, his torpor. To counter this listlessness his neurologist suggested reducing one of his antiepileptic drugs, Clonazepam, a relative of Valium. We did. His seizures doubled. I got cold feet. We went back up.

Over the course of the next fifteen months we tried to fine tune Calvin’s meals and meds, still hoping for some miracle. After months of no improvement I put some hard questions to his neurologist and together we fashioned a plan of action to break through Calvin’s plateau in development. We knew we had to get him completely off of the Clonazepam and weather the inevitable withdrawal seizures along the way. What we didn’t expect, however, was for Calvin to stop tolerating the diet and plunge into a downward spiral.

To be continued

Calvin's meds 2008

keto kid - part one

The only thing that might begin to resemble a cure for epilepsy is the Ketogenic diet. It’s unfortunate that the diet works only for a smattering of people, usually children, but at least it can work, though many conservative neurologists remain skeptics.

Soon after Calvin's diagnosis and while researching the diet (his local neurologist never mentioned it) I learned it had better efficacy when begun early in the treatment of seizure disorders. So, in March of 2008, when Calvin was four, we checked him into Massachusetts General Hospital for the three-day initiation.

We were hoping, as do all parents who put their kids on the diet, that Calvin would be one of the lucky few—the five to fifteen percent, or so, of children who try it—whose seizures would stop within a matter of days after starting the treatment.

We first had to fast Calvin for twenty-four hours to put him into ketosis—the state in which, for three thousand years, seizures have been known to stop. In the hospital they monitored his heart rate, oxygen saturation and respiration. His blood and urine were screened for ketone bodies, or ketones. The diet mimics fasting or starvation by increasing fat and severely limiting the amount of carbohydrates ingested. The liver converts the fat into fatty acids and ketones which pass into the brain and replace glucose as an energy source. An elevated level of ketones in the blood can lead to a reduction in the frequency of epileptic seizures, though it is not yet known whether it is the ketones themselves, or some other coexisting mechanism responsible for the effect.

Calvin’s first meal in the hospital consisted of egg, mayonnaise, cheese, heavy cream and melon. It didn’t sound too bad until we weighed it out on the sensitive gram scale, to the tenth of a gram. The boiled egg–yolk and white weighed separately and just enough to fill a tablespoon—were mixed with a similarly sized dollop of mayonnaise, and a small slice of cheese on the side. The diminutive portion of cantaloupe, about the size of a grape, shocked me. Calvin had to drink the heavy cream.

Dolefully, I contemplated the meal which was minuscule due to the high fat accounting for most of the calories. I worried that Calvin, who had always had various difficulties with eating, would refuse this strange new menu. I felt badly that he could no longer enjoy his favorite crispy graham crackers, orange cheese puffs and an unlimited supply of crunchy sweet grapes. After all, there were so few things Calvin really got to enjoy in life.

But, being the superkid that Calvin is, he choked it all down—every required morsel—and every bit of fat scraped up with a spatula. That night he got sick twice, but overall the initiation went smoothly and on the third day we were released from the hospital to try it ourselves at home.

To be continued

drugs suck

Ugh. Or rather “insert F-bomb here" to quote a clever friend of mine. I just nervously and reluctantly gave Calvin his new seizure medicine. His other one has seemed to have maxed out its effectiveness. This one, his eighth trial, is salmon colored and oval with a score mark indicating where to cut it in half, which I did, revealing the mysterious chalky white substance that comprises all seizure drugs I have thus encountered. Drugs suck, but they are a necessary evil when it comes to epilepsy.

Prior to burying the half-pill into Calvin’s yogurt I had read up on this new drug to preempt any surprises and to ensure he was getting the correct initial dose. The first seizure med that was prescribed for Calvin was accidentally double-dosed by the hospital’s covering neurologist and Calvin went ballistic. We caught the error immediately and, without admitting fault, the doc cut his dose in half.

The side effects we need to look out for this time are no different, really, than all the other drugs: somnolence, vomiting, headache, fatigue, dizziness, nausea, decreased appetite, rash, ataxia, diplopia, psychomotor hyperactiviy, abdominal pain, aggression, etcetera, etcetera.

Poor kid. He has to deal with so much and now this. We just spent the last eighteen months reducing his seizure meds from four down to one and now we have to add another because the damn seizures keep rearing their frigging heads. Would some brilliant researcher please find a cure? We needed it yesterday. Insert F-bomb here.

can-do kid

My boy Calvin will be seven next month, though you’d never know it. He is small for his age and needs great help—often complete assistance—doing things you’d expect from an infant or toddler. However, there are some things Calvin can do, and we are so very proud of these accomplishments which he’s worked so hard for.

Calvin can crawl on his hands and knees, though slowly and awkwardly. While we spot him he can creep up the stairs virtually by himself and can scoot downstairs on his bum. Calvin can stand up in the middle of the floor and walk, but we remain by his side to catch him if he stumbles. Calvin can bend down to pick up a toy and he can finally go from standing to sitting on the floor by himself. His balance is improving so he is able to stand up in one place by himself for longer periods of time.

Calvin can bring a spoon, pre-loaded with food, up to and into his mouth. He can pick up and eat small morsels such as dry roasted peanuts and blueberries. He can drink from a sippy-cup, though he drops it on the ground when he is done. And if we start them first, he can turn the pages of a book.

When dressing, Calvin can pull his shirt down over his head. Once we help him find the armholes he can push his hands through the sleeves. Calvin has just learned how to pull off his loosened shoes, I help him with his orthotics, and then he can pull off his socks. He can put his arms up when we take off his shirt and is beginning to learn, once his arms are out, how to push his shirt off of his head. Just this last week Calvin started stepping into the bath by himself, though his balance is precarious so we always have a hand on him.

Another new skill of Calvin’s is, if a door is ajar, pulling the knob toward himself while stepping back out of the way then walking through the entrance. We are working on grasping doorknobs firmly enough to turn them and we are teaching him to flip the wall light switches on and off.

There are still millions of things that Calvin can’t do but I prefer to focus on my cute can-do kid.

loss

I think about losing Calvin a lot—probably every day. The intractable epilepsy makes the possibility of sudden death much more likely. And while the thought is not a very nice one it also serves to remind me to cherish my time with Calvin and to appreciate all of the wonderful ways he continues to enrich my life. Because of Calvin I often think more deeply about the loss that others suffer.

For years, some dear friends of ours yearned to have a child. The couple tried everything to get pregnant but met only with repeated disappointment. Finally, they turned to the world of foster care and one special day they brought home a beautiful baby girl, just days old, whose biological mother could not care for her. The joyous couple loved the new addition to their family. They delighted in feeding her, clothing her and doting on her for eight glorious months. As a result she was a very happy child who returned her parents' love in abundance; it was clear in the way she was gleefully mesmerized by them. But then one day, what had felt like some magnificent dream, in a millisecond became their worst torment; some blood relatives of the child, who had previously declined taking her in, changed their minds. The state swooped in and snatched the baby from their arms—the only mother and father the child had ever known—and drove off, depriving her of ever again seeing their smiling faces, hearing their soothing voices or feeling their loving embraces.

Still, I am moved to tears when I see photographs of the three of them together. I can never fully know their pain, nor the child's trauma, but I feel the stab of their sorrow. I know loss. It has weighed so heavily on me at times it has been difficult to breath. It has strangled my heart. But the loss of a child, I believe, is immeasurable and in no way can it be imagined.

Life can be unpredictable. It can turn upside down in a split second and become something utterly unrecognizable. It is impossible to equip oneself for this kind of tragedy and suffering. The only thing to do is to persevere, to love as much as possible from day to day and to appreciate all of the wonderful things that life has to offer, especially in case they disappear.

holding out hope

As each new year begins I hope it will be the year that Calvin outgrows his seizure disorder. But as the months flick by it feels less and less likely that that will be the case.

In February Calvin will turn seven followed by March, the unceremonious and infamous fifth anniversary of his epilepsy diagnosis. Due to the epilepsy alone, by then, he will have tried at least eight anticonvulsant drugs, at times as many as four at once. He will have been on two unsavory highly restrictive diets. He will have tolerated a half dozen 24 – 72 hour electroencephalograms and his second MRI. He will have endured a legion of painful blood draws, some successful, some not. And all of this Calvin must withstand because of epilepsy—because of hundreds of seizures that just won’t stop coming.

Certainly, the first few years since his diagnosis were the hardest to take. We began witnessing our child suffer frightening seizures during most of which he’d stop breathing and start to turn blue. At all hours of the day and night we called 911 because of status epilepticus, a serious, sometimes fatal seizure activity. Scores of times we spent weary hours in glaring, austere emergency rooms and were often transferred in dark ambulances, chains jangling eerily from their underbelly, to the pediatric intensive care unit thirty-five miles away from our home. At least three times we were faced with the dread that we might lose Calvin to a prolonged seizure, his body and brain being battered with convulsions. And, insidiously, we have had to subject Calvin to strong anticonvulsant medications that at times send him into mania and at others into oblivion, no doubt having stunted his development along the way.

Nevertheless, somehow I still hold out hope that he will outgrow this brutal fiend, though his chances are slim and getting slimmer. Perhaps we will find a silver bullet—a medication that will once and for all halt the throng of seizures that march reliably and repugnantly through his brain. More than anything, however, I hold out hope for a cure—a way for my Calvin to enjoy seizure freedom and liberation from the heinous side effects he must cope with—instead of wearing the unreliable bandage that is medicine, which is superficial at best and keeps coming off.

Our only hope for a cure for Calvin, and for millions of others afflicted by epilepsy, is through heightened awareness. So, with the advent of this new year please share Calvin's story with others. It's not hard, just do it one story at a time.

not-so-good day

from november 2007

i am having a not-so-good day so far. i ran into an acquaintance who i have hoped would become a new friend. she has three beautiful, healthy tow-heads that are very young. she told me she heard calvin had had a seizure the night we were supposed to have ice cream with our mutual friend. i said yes, it was true, and that it happened a lot, and then i started to break down in the grocery store parking lot and had to excuse myself. i wonder if this sadness will ever dissipate. i know swimming should help but i am still afraid swimming will make me sad and cry like it has every time i get into the pool—remembering swimming while i was pregnant. i am tired and grouchy and anxious and miserable a lot of the time. i'm not going to take medication because i feel like i need to feel these feelings for calvin. i believe if i don't feel them then i won't really know how hard this all is, and i think i need to know that. i don't want to be numb to the situation. i want to go deep then come out on the other side.

 

photo by Michael Kolster