special needs

Somehow I’ve never quite warmed to using the term “special needs.” I understand that it is the current socially accepted, politically correct moniker for disabled people, and a departure from harsher terms such as “handicapped” or “retarded,” (or the things I sometimes think in my darkest moments such as “messed-up, basket-case, train-wreck.”) But I feel like it sugar coats the real—sometimes colossal—problems and challenges disabled people have.

I’m not sure if the term “special needs” really benefits kids like Calvin. Perhaps it’s more useful to others. As an umbrella term, “special needs” couldn’t be more vague, allowing society's mainstream to avoid—avert their gaze—and ignore half the reality of what is often a painful, sometimes repulsive, pathetic situation. “Special needs” holds kids like mine at arm’s length from others—sequesters them—and perhaps aids others in feeling more comfortable. In my cynicism I imagine folks thinking, “that kid is special ... isn’t that quaint.”

I prefer just saying it like it is. “My son has pretty grave neurological problems, retarded development and intractable epilepsy—he can’t talk, can’t walk by himself and is still in diapers.” It takes longer to get out, but accurately describes my boy. And if the person I am speaking with doesn’t react by staring blankly open-mouthed or saying "huh" and immediately changing the subject, I will then add that, though Calvin is seven going on two, he has come to a place where he seems to be a pretty happy, very affectionate child ... which brings to mind another thought.

The other day an acquaintance kindly wrote to me about children with special needs. I genuinely appreciated her intentions, which were warm, kind words of concern from an obviously generous heart, though I couldn’t agree with some of what she had to say. She wrote, “I believe God gives these kids such a sweet disposition to make the journey easier.” I’m not religious—my view of a celestial essence having everything to do with the extraordinary chance of nature and nothing to do with a man upstairs calling the shots. But my impulse—nonetheless—was to think, why didn’t god save everyone a whole lot of grief, burden and suffering and just not give these kids such heinous afflictions to begin with? Moreover, these “special needs” children don’t all have sweet dispositions—I know from experience—though society might have us think so perhaps to assuage the guilt factor. My son has run the gamut: from colicky infant to irritable, uncomfortable, suffering “toddler” to completely-fried-zombie-kid and finally to a pretty happy, albeit stubborn, sweet little boy—at least for the time being.

So anytime I hear the term “special needs” I kind of cringe, and then do my best to let the ordinary folk know that—though Calvin is an extraordinary cutie-pie—he is a pretty messed-up kid that one doesn’t just fold up nice and neat and put away in the “special needs” box.

photo by Michael Kolster

day eleven

A pretty good string of days ended with Calvin’s seizure yesterday morning—day eleven.

I knew something was amiss when I was trying to feed him breakfast; he was a whirling tangle of spastic limbs—uber-hyper. Nearly poked me in the eye with an errant fist. So that he’d let off some steam I slid him into his jump-up. Almost immediately he started shrieking. His body tensed, teeth clenched in a devilish grimace, fingers working madly, obsessively rubbing together, while he pounded the floor with booming heels. I hadn’t seen this irritable behavior in days and it served as a bad omen.

While sipping my cold coffee on the couch I noticed Calvin still. I called his name to see if he’d react, his back turned to me, slumped in the jumper sucking his thumb, as he often does. No response. So I lifted his face to mine, pried out his thumb to see bluish lips and flushed cheeks on a pasty complexion. As quickly as I could I unbuckled the straps, hoisted him out and over to the couch. Though it began like a partial seizure I knew it was building into a nasty convulsive tonic-clonic.

I grabbed my camera from the coffee table and filmed it, placing my other hand softly, yet firmly, on Calvin’s shoulder as the seizure blazed for three more minutes. The color of life fades sickeningly from his face until he looks like a zombie. His eyes quiver and blink, in what appears as time-lapse, and stare off into nothingness—like hollow orbs—all at the same time. The docs tell me he is unconscious, but I always wonder, especially when I witness the frightened expression on my boy’s sweet little face.

So, eleven days since the last seizures and I can’t really say that the increase in drugs is helping much. These relentless seizures—they just keep on coming no matter what we do. Five years of them. Hundreds. Unfortunately Calvin has to be a guinea pig. We try one drug until we’ve maxed it out and then we try another—sometimes as many as four at a time. We try special, rigorous, exacting diets, and then we try another. Nothing has worked. He’s taken eight different anticonvulsant medications since he was two years old. Who knows what they’ve done to his developing brain? I know in my gut that the drugs are in great part why he can’t walk by himself, though he’s seven years old.

It’s god awful, this epilepsy, and it’s looking more and more like Calvin has been handed a life sentence. But we’re right there with him, hand in hand, all the way.

video: this morning's seizure

Caution: The following is a video of the seizure Calvin had this morning. Please know that it may be disturbing for some to watch.

Please share Calvin's Story with others. We need to find a cure. There's no time to waste.

suffering

I flew home from San Francisco for Thanksgiving the year my dad was seventy, less than two months before he died. My friend Scott picked me up from the SeaTac airport. We drove on the curving highway, across bridges, through suburbs and out into the blackness of the Cascade foothills. I remember feeling anxious to get home, knowing my dad had been having a rough time with the cancer and the chemo in what was his fifth year since being diagnosed.

When we arrived I hastened to the door as Scott grabbed my luggage. My mom greeted us. It was clear by her body language that dad wasn’t doing too well, so I hugged and kissed my friend goodbye and quietly shut the door behind me. She told me she had just given my father a morphine suppository.

The house was unusually dim. I stepped quietly into the family room where a rolling fire licked the glass of the wood stove. My father was kneeling on the floor, resting his torso across the denim couch, his slippered feet pigeon-toed on the carpet behind him. His orangey sweatpants—the ones with the white racing stripes and wavy nylon zippered leg openings—weren’t hitched up all the way, exposing his cotton boxers, akin to the trendy way boys and men do today. He was trembling and restless, moving his head around, his cheek flat on the cushion, trying to get comfortable. I could tell he was in immense pain by his shallow panting breath and tightly closed eyes. I wasn't sure he was aware of my presence.

I spoke softly to him, told him I had just come home for Thanksgiving. I knelt down next to him and caressed his hunched, bony back through his sweatshirt. I told him I wished I could take his pain away. He had no words. It was our most intimate moment together.

Often I think of the pain and suffering that my dad endured, so needlessly and at a relatively young age for such a vigorous man. No reason. Then my thoughts drift to so many others—my friend’s little niece who painfully—unsuccessfully—battled leukemia, and her five-year-old brother who had brain tumors and endured horrific treatments. I think of my close childhood friend who must cope daily with rheumatoid arthritis, and at such a young age. I think of my sister-in-law’s best friend who has been fighting breast cancer for nearly five years—now stage four—while raising a family as a single mom, and of my friend’s little boy who endured a life of pain and discomfort that no one completely understood and that came in reliably ceaseless waves.

And then there's Calvin, who I see—intimately—pummeled by the seizures, the drug side effects, the painful blood draws. Then I realize that one thing we all have in common, that makes us human, is suffering of one kind or another at some point or another. It is unavoidable, not something we can control. But what I learned that I have the power to control is to sooth the suffering of others, stroke their backs, speak softly to them or just listen, and try to make it better, if only just a little.

photo by Michael Kolster

not one day goes by

Though my love for Calvin is immeasurable and continues to grow, not one day goes by that I don’t wish he was normal, healthy, complete, able to run, play, jabber—and dream—and not have to deal with the wrath that is epilepsy.

the special mother

I am not a religious person and I most definitely do not believe that things happen for a reason—that there is some grand design which caused Calvin to be disabled or that brought us together by some divine providence. But I had to grin with amusement when a friend sent me the following story shortly after Calvin's second birthday:

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

photo by Michael Kolster

bully dunk

When I was about Calvin's age, shortly after I had learned how to swim, I went with my family to the summer league A championships. At the time I was a B class swimmer, fast enough to earn a gold B champ medal in the 25 yard breastroke but not fast enough to compete with my siblings in the more esteemed A meet.

The competition was held at an outdoor facility that had two pools, one roped off with blue and white plastic lane-lines for races and the other used for warm up and cool down. This second pool had a deep end for diving where I was passing the time frolicking in the cool blue water with some of my teammates.

One boy, who was a year—maybe two—older than I, was hanging onto the edge next to me. For no apparent reason he slapped his hand—elbow up—on top of my wet head and dunked me under, palming my skull like a basketball. Reaching up, my fingers were mere inches from the rounded cement lip of the pool. I scraped and scratched at the slippery tile wall as if I were sealed in an aqua blue coffin, no one knowing my terror but me. Looking up, as my bubbles ascended then boiled at the surface, I saw a blurry Van Gogh sky, swaths of painterly blue and white eerily rippling at my frenzied fingertips. I was petrified and too panicked to understand that if I dived deeper I could escape the boy's grasp and pop up safely a few feet away. I was out of control, completely at the mercy of this wiry bully boy. He released me, just as my lungs had begun burning in my birdlike chest. I scrambled up and sprung out of the pool panting, never to get within arm's length of him again.

I wonder if Calvin feels this same sense of panic, hopelessness or fear when he is having a seizure. Does his vision of the world warp and blur? Does he feel as if he is drowning, unable to take in air to sooth his burning, collapsing lungs? Do his muscles cramp and leaden? Does he try in vain to cry out for help only to be smothered by the suffocating torrent, the bully dunks that relentlessly seize his brain?

Though I don't really believe it, I can only hope that he simply sees and feels a beautiful Van Gogh sky.

detail (sky) Green Wheat Fields by Vincent Van Gogh

family ties

Epilepsy affects three million Americans. Fifty thousand of them die from epielpsy and related causes every year—more than from breast cancer—and many of them are children. Epilepsy is a problem not only for those who suffer from it, but for their brothers, sisters, children, husbands, wives, mothers and fathers. Please watch these brief yet compelling stories told by people whose beloved family members have epilepsy, some of whom have died from it because we don't yet have a cure.

Please share.

remembering kelli

Summers, as a kid, I spent hours at our community pool. In the morning I’d ride my bike there, a ratty towel draped across the back of my neck wearing my swimsuit under a t-shirt and cut-offs. Swim practice was an hour long, steam rising in the sunlight off the glistening water. After practice my friends and I spent as long in the shower, pulling the knotted beige cord to keep the spray of hot water flowing over our nimble bodies.

Most of the time I’d hang at the pool for what seemed like all day, slathering my limbs with cocoa oil and baking on the hot cement deck, then lazily dipping into the cool water or climbing the high-dive ladder to do endless back flips.

Me and my teammate Debbie used to sit atop the stack of blue wooden starting blocks that were shoved up against the cinder block wall under the eves, right next to the PA speaker. We'd listen to disco tunes on the radio. Our favorite was Best of My Love by The Emotions. We knew all the words and had the groovin’ moves to go with them.

That memory has never faded, but into high school then after college Debbie and I didn’t see each other much. She was one of my first friends to be married but by then we had drifted apart for no other reason but space and time.

I heard from a mutual friend that her first child, Kelli, was born with a serious seizure disorder. During the first few weeks of her life she suffered two to three hundred seizures a day, so many that she was rendered incapacitated—wheelchair bound—her brain not having a chance to recover and learn between the endless battery of electrical storms. I never reached out to my friend, whether out of fear or ignorance, I’m not sure. Perhaps a little of both.

Sometime after Calvin was diagnosed with epilepsy I wrote her a letter. It had probably been at least twenty years since I had last seen her. She called me and told me about her her adorable, beloved daughter, and how she had died in her teens. She described the litany of treatments her child had endured—many the same as Calvin—toxic drugs, rigorous diets, painful blood draws, prolonged hospital stays, and more. My heart sunk and I felt a wretchedness over the lost opportunity to have reached out to her sooner showing compassion, perhaps even to have met her special girl.

Debbie had studied to become a nurse in great part due to her experiences with Kelli. She has a tattoo of her daughter’s name on her ankle to commemorate how Kelli changed her life, made her stronger. It is beautiful. And though I never met her, I think of that remarkable child who suffered so much—needlessly—fought so hard and no doubt touched many, many lives. I believe Kelli must have had the same calm glow I remember of her mother.

imagination

A few nights ago I brought a couple of pizzas over to my girlfriend’s house to share with her and her two little boys. The oldest boy, a cutie-pie a year younger than Calvin, was proudly showing me his latest talent spinning a large inflatable tube around his rigid outstretched arm, something he had learned in gym class. I sat in the kitchen with his mother eating a slice of deep-dish sausage pie and drinking a glass of red wine as he frolicked around the room in stocking feet, jumping and spinning the tube around and around and around.

Suddenly, something went wrong. The boy went berserk, writhing and convulsing on the floor seemingly choking, strange guttural sounds emerging from his mouth. Instantly, I panicked and nearly jumped out of my seat to call 9-1-1. But seeing his mother sitting quietly relaxed taking another sip of her wine, I realized that nothing was wrong. The kid was simply being a kid, spazzing out, letting his imagination and inhibitions go wild—you know, like normal kids do. And though I was relieved that there was no emergency, an uneasy feeling rushed over me—of surging adrenaline—that upset my nerves. When my kid did this sort of thing it would be because he’d be having a seizure.

The next thought I had, and one that I shared with my friend, was my uncertainty as to whether Calvin has an imagination. Of course it is within the realm of possibility—perhaps even likely—that he does, though I don’t know how I’d ever be sure. He's so locked in, unable to express anything but glee, obstinance, want and love, and even then, these emotions are often murky and difficult to ascertain.

But perhaps I'm the one who must employ my own imagination to somehow get inside Calvin's head to understand that he, like other kids, just might be able to dream.

photo by Michael Kolster

octopus

Lately the kid, at mealtimes, is non-stop frigging spastic energy. His behavior improved fro a little while but since increasing one of his antiepileptic medications it has worsened again. He flails his arms like an octopus on speed and kicks his feet into me with reckless abandon. He can’t manage a spoon when he is like this, and he’s not very good with one to begin with. The yogurt goes everywhere but in his mouth—in his hair, on his chin, his bib, his hands, the rug. When he kicks me, though it’s not malicious, he sometimes pins the skin of my inner thigh between his nubby shoe and my chair. Once, I leaned in to feed him a spoonful of cheesy egg and he inadvertently poked me in the eye with his thrashing, rigid fingers.

After a sleepless night is when this behavior is hardest to deal with. I get frazzled and frustrated and feel like screaming above his own screams. At times I do, which only causes Rudy, our ten-year old chocolate lab, to grow grayer than he already is. It escalates my own anger but, thankfully, just makes Calvin laugh. At times I feel like punching a wall. I never do. But I’ve had to remove myself from the situation and go whack my pillow. Once I pummeled repeatedly so hard that I injured my elbow and it ached for days.

I used to say that Calvin wasn’t manipulative, but when sitting in his high chair, when he wants my attention and isn’t getting it, he’ll scrape his teeth into the wooden tray gouging troughs and dislodging splinters that he inevitably must be swallowing. There’s a large divot in the tray to prove it. Somehow I’ve got to find a way to curb that behavior, among others. A fleece blanket covering the tray is my current solution, though our little Houdini has begun to figure out how to get around that trick.

But this crazy kid of ours, this goofball piece of work, is so damn cute I don’t know what to do with myself sometimes but just swoon. Lately, I’ve even begun feeling fulfilled knowing that he will be our only child, our one and only two-armed, two-legged octopus.

i miss you dad

I miss you Dad. It’s been a long time since I last saw your face, laughed with you, held your strong hand, gave you a hug where you hugged me back lifting my feet off the ground. I miss our wrestling matches. I miss helping you water your amazing garden. I miss tossing the ball with you. I miss watching you officiate at swim meets, so proud that the tall handsome starter in white was you. I miss eating your soft-boiled eggs with butter and salt watching you lean your hip against the kitchen counter, bowl and spoon in hand, reading the morning paper.

I miss you Dad. I used to love listening to your litany of jokes just to watch you crack up—crinkled up nose, squinting eyes filling with tears of sheer joy and amusement, wide jumping shoulders, unmistakable hoarse cackle. I miss pouring you more wine when you weren’t looking, just to take your somber edge off. You liked relaxing. You didn’t do it enough.

Dad, you went away far too early, in the prime of your retirement, finally resting after thirty years of what became monotony at a desk job on a low-ceiling florescent-lit floor with hundreds of busy clones in crisp white shirts and ties, the token female always the secretary. You should have had many, many more years ahead of you the way you kept your body and mind in such outstanding shape. No man your age—nor half your age—could hold a candle to you. But that insidious cancer, your body’s own cells attacking, painfully eroding your very marrow, chemotherapy sickening you to the core.

I’ll always remember the pillar which was you. I feel we are so alike and am thankful that your strength and stamina runs through me like a steely rod. It’s because of you that I can withstand so much of what life throws my way.

I miss you, Dad. I wish you could see us now. I can imagine you cuddling with Calvin, tickling him and kissing him and bouncing him hilariously on your knee like you did with me. He would crack up the same way you used to. You are part of him. The two of you wouldn’t need words, just time, just togetherness.

I miss you, Dad. I think of you every day.

vigil strange i kept on the field one night

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

— Walt Whitman —

Walt Whitman / Thomas Cowperthwaite Eakins / Platinum print, 1891 (printed 1979) / National Portrait Gallery, Smithsonian Institution

shattered dream

Sometimes Calvin laughs in his sleep. It is simultaneously cute and unsettling. Last night was no exception.

I was having a dream about a couple I know who own a plant nursery down the road a spell. Though in real life we don’t know them well, in the dream Michael and I were cooking them dinner. It was an intimate yet somber affair. The man had just developed some sort of grave illness while the couple was struggling with how to keep their once thriving business afloat.

The woman and I sat on the couch together and she began talking about another couple that owned a similar nursery and whose only child had a disability—was retarded. Behind large glasses her eyes welled up with tears as she described compassionately how difficult she thought it must be for them—running a nursery while caring for a disabled child. She selflessly put her own stress and worry aside while radiating great tenderness and concern for the other family. I knew, by looking in her eyes, she was also relating to me her empathy toward our ongoing ordeal with Calvin, his poor development and his relentless, miserable seizures.

And then I heard Calvin laugh, or what I thought at first was a laugh, and my dream was coldly shattered into smithereens by yet another seizure. It was really no different from all the rest—upsetting—and probably upwards of three minutes followed by writhing, fists banging his skull, and the sour groan of gas creaking and bubbling in his knotted belly. Half an hour later he had another, though a shorter, partial seizure, making his telltale click-swallowing sound, his wandering eyes peering from a ghostly pale face.

Finally, as Calvin drifted off to sleep just before four o’clock, the lonely trill of a songbird echoed hollowly through the blackness of tall trees as the sky began to slowly lighten. It sang what I felt was a melancholy tune.

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.

detail of The Irish Famine by by George Frederick Watts

crying shame

God he’s beautiful. I love diving into those large almond-shaped indigo blue eyes and swimming there for a while. Those watery orbs mesmerize, draw me in, make me swoon.

Man he’s perfect. His skin ... it’s superb, all silky smooth like Japanese mochi rice cakes.  Flawless, with a happy sprinkling of tiny brown freckles here and there—on his cheek, his left angel bone, matching speckles on his bicep and forearm and one fleck on his tush.

Geez what a looker. That thick mass of auburn hair that any woman would kill for—shiny, too. And what a smile, with it’s tiny matching dimples at the edges of his lower lip near his chin—sends me to nirvana every time I see it, feel it. What a cute little rascal.

Dammit all. Why, when my boy is so extraordinarily lovely inside and out, did he have to be born with a brain missing pieces? It's a crying shame. A dirty trick. A sick joke.

Insert F-bomb here.

eight is enough

I don’t know how they managed but my parents raised six active kids. I figured my mom was pregnant for a total of four and a half years. My parents practiced the rhythm method, but it turned out they had no rhythm. The first five kids came in rapid succession, followed by a four-year pause before I came along. Imagine raising a ten-year-old, an eight-year-old, seven-year-old, six-year-old, four-year-old and an infant. I can’t. She must have changed dirty diapers for thirteen years straight—cloth diapers that she washed and dried. And she didn’t nurse, it wasn’t fashionable then, perhaps even frowned on by her peers, so she had to prepare formula and sterilize bottles. Crazy.

When I was little, my mom took me to the Prairie Market down the street, the modest bulk-food grocer of its time. I rode perched on the low front of a cold, flat metal dolly, its large rubber casters spinning and squeaking as my mom wheeled the wide cart awkwardly between aisles, my dangling feet scuffing on the slick poured cement floor. Next to me she stacked large cartons of non-fat dried milk, wire-handled plastic gallon tubs of ice cream, big boxes of wheat flakes and oatie-Os, jumbo toilet paper bundles, scores of eggs, cartons of Bisquick, countless packets of Hi-C, bacon slabs and sausage links, loaves of doughy white bread, cumbersome russet potato sacks, fish fillets, mounds of ground beef, margarine, tins of Crisco, dense ten-pound parcels of flour and sugar nearly splitting at the seams, enormous banana bunches, navel oranges and over sized jars of oily peanut butter. She worked hard to keep our kitchen well stocked.

In the summer my dad supplied us with abundant vegetables and fruits from his garden. We had corn, Swiss chard, carrots and squash coming out of our ears, all of which my mom prepared. She made bread from brown bananas or zucchini, plus strawberry-rhubarb and cherry pies and blackberry cobbler. Dad canned cherries, plums and pears and cooked up magical applesauce, pear butter, raspberry, strawberry and blackberry jams. Once in a while mom made homemade banana fritters in our deep-fat fryer or sweet cake doughnuts, shaken in a crumpled grease-stained brown paper bag full of powdered sugar.

All six of us had long lists of chores. We set the table for meals, cleared it, washed the dishes, cleaned windows, dusted, vacuumed and ironed colossal mountains of laundry before folding it. Our outdoor chores consisted of mowing a huge lawn, grooming its edges with hand-clippers (before weed-whackers were invented) raking leaves, gathering fir cones, weeding, dead-heading rhododendrons and helping dad in the garden.

It was definitely a group effort in our family, and we were all dutiful kids, at least it appeared that way to me. But no doubt my mom and dad took the brunt of life in a large family, with my dad’s modest salary, toiling constantly with little to no time for themselves to just sit back and relax. Often I think back on their immense responsibilities as our parents, and am awestruck—every time—completely impressed and humbled. And thankful.

And though Michael and I have the challenge of a severely disabled child, compared to the way my parents labored with a family of eight, I'd say we got it easy.

tone of voice

Much of the friction of life is caused by the tone of voice.
The sarcastic, cutting, resentful, discordant tone of voice is responsible for a large part of the unhappiness, not only in the home, but also in business and in society.

- Mother -

An entry from my Grandmother's personal Album of quotes.

fortune

During a 32-week sonogram Michael and I learned that there was something terribly wrong with our unborn child’s brain, that he had ventriculomegaly, which meant that the lateral ventricles in his brain were enlarged and could continue to grow, filling with excess cerebral spinal fluid and pushing against the surrounding brain tissue. The doctor told us coldly, “this is something you need to worry about.”

Our learning curve in the following days, prior to Calvin’s birth six weeks early, was practically vertical, having never heard of this ventriculomegaly thing before. We were faced with the grim news that the condition, if it worsened, might require emergency neurosurgery at birth to install a shunt allowing excess fluid to drain off and hopefully preventing hydrocephaly and brain damage.

At the time I remember thinking about the cliche many parents quote, which is that they hope their child is born with ten fingers and ten toes. I wondered if most parents hoped specifically that their child’s brain be formed correctly, something I took for granted, at least until that sonogram.

Thankfully, when Calvin was born his enlarged ventricles were stable so he did not need a shunt. Nevertheless, he spent a week in the neonatal intensive care unit (NICU) plus six more in the hospital before he was stable enough to go home. During the first few weeks Michael and I ate meals and bunked at the nearby Ronald McDonald house but spent most of our time beside Calvin in the hospital holding him, nursing him, changing his diapers and hoping. Michael traveled 25 miles back and forth from the hospital to the college to continue teaching, having taken on an extra class on behalf of a colleague. Even so, Michael never let me and Calvin down. He was always there when we needed him during what felt like a very fragile situation. He was our rock.

The Ronald McDonald House, a modified old brick structure, had a dozen rooms for parents of sick children being treated at the hospital. One night, while eating a late dinner in the communal dining room, Michael saw a woman he had met once briefly—a fellow artist there with her companion. She had given birth around the same time that I had and her child remained in the NICU. I remember seeing who I assumed were her parents gathered closely around her with dour faces speaking quietly in a corner of the kitchen. I didn’t know what afflicted the child, a daughter, but I got the sense that it was a grave situation.

We heard from a mutual friend, only a few months after our stint at the hospital, that the artist woman’s child had not survived—a pain I cannot even begin to imagine.

To this day, thinking about that couple deeply saddens me though I did not know them. And I realize that, even though Calvin’s health is so complicated and dire, that he faces limitless developmental obstacles and is a great challenge to raise, I am thankful for our good fortune to still have him gracing our lives.

photo by Michael Kolster

restless night

In the middle of the night I was up again, shrunken by the damp cold of our old house, the promise of a soaking rain finally drumming down on the rooftop. From 12:30 until just past 2:30 a.m. Calvin fidgeted, restlessly slamming his head into the mattress, standing, sitting, kneeling, patting the padded rail for me to give him some water and calling “uh-uh” (mama). There was no getting him to settle. After lying him back down half a dozen times or so, and giving him a bit of water, I hoisted him out of the crib. I changed his diaper and lubed the tips of two waxy white bullets—acetaminophen suppositories—thinking that, because of his congestion and/or the antiepileptic drugs, he might have a headache.

I spent those two hours huffing and cussing and stomping around in weary anger and frustration. During these kinds of nights patience runs low, my testiness heightened in the dark hours. But somehow I still manage to snuggle and coo with my sweet little boy because I know that none of this is his fault, I just wish I could take it all away and make it better.

Crawling back into our warm bed for the umpteenth time, tensely expecting more of the same agitation though hopeful Calvin would settle and drift off to sleep, a familiar ominous feeling crept over me that a seizure would follow in the wee hours of the morning.

But just before six we woke to Calvin's sleepy little chatter and the creak of his mattress as he rose to his knees and lovingly, wantingly chirped “uh-uh.”

photo by Michael Kolster

the boy in the moon

A friend and former colleague of Michael’s emailed me last month. He’s a devout reader of my blog. He wrote of an interview he’d heard on the radio about an author’s experience with his fifteen-year-old son who had been born with a very rare, seriously debilitating syndrome. My mother-in-law had told me about the same story, and they both urged me to listen, thinking I had something in common with the author. Well, I did ...

Click here to read or have a listen to this compelling story

Click here to read the full story and view photos/video

Ian Brown and his son Walker photo by Peter Power/The Globe and Mail

mealtime

Calvin has never sat down for a meal with us. Ever since he began eating solid food he’s been spoon-fed which requires our complete attention and, for one reason or another, he’s never been able to eat the same foods we eat. Calvin can manage finger foods, but we must dole out the morsels one by one, otherwise he’s liable to put an entire handful of blueberries into his mouth all at once and choke. And he can't use a spoon by himself.

For the past four years he has been on a couple of special diets aimed at curbing his seizures, and though we saw an improvement in his persistent crying we haven’t seen a reduction in seizures. However, for fear of increasing seizures, plus our need to change only one variable at a time—at this point being his seizure meds—Calvin remains on the diet.

Every food Calvin eats is weighed on a scale to the tenth of a gram, which is equivalent to about one drop of olive oil. I refer to a grease-stained, water-marked print-out of the meals I’ve created online. His dietitian gives me precise goals for fat, carbs, protein, calories and ratio of fat to carb/protein.

First, for Calvin’s Omega-3s, I pierce two fish-oil gels with a paring knife and squeeze the contents into a small bowl that has been zeroed-out on the scale. I top off the oil totals with olive oil. Next I add yogurt, a particular high-fat Greek strained yogurt for which I scour nearby stores buying six or seven tubs at a time just to keep us in stock. Stevia, a carb-free sweetener, gets sprinkled into his yogurt then it’s all stirred into a creamy emulsion. Every meal includes this yogurt-oil mixture, spoonfuls into which I put his various medications.

For dinner Calvin almost always eats chicken with avocado and fruit. Again, I zero the scale, chop and weigh the pre-cooked chicken thighs, chop and weight the avocado then add the mayonnaise and warm it in the microwave for fifteen seconds. Lastly, I wash and chop strawberries into finger food-sized pieces and, voilà! I’m done. Except, of course, for his meds.

Twice a day Calvin gets a compound of potassium citrate to prevent metabolic acidosis and kidney stones while on the diet. I shake the clear red bottle vigorously, invert it and draw up the fluid into a 5ml syringe. The pink liquid goes into the water he drinks out of a baby bottle or sippy cup. He also gets his seizure medicines twice a day. The first, a cousin of Valium, is a small white round scored pill. I carefully mount it on the razor blade inside the pill cutter, close it carefully and tap until the pill breaks. He takes one and a half of these. The second is a new anticonvulsant. He gets two and a half of these oval salmon-colored gems.

So, on the rare occasion that the three of us go to a deli or a diner (we pretty much have to bypass any other type of restaurant except a drive-in) Calvin sits in the high-chair, drinks his water and plays with toys while we eat, having already had, or about to have, his precisely calculated and weighed meal at home.

I dream of one day taking Calvin to a restaurant for dinner, ordering burgers, fries and chocolate malts all around, leisurely enjoying the atmosphere while crayon coloring lobsters and maps of the United States printed on thin scalloped-edged paper placemats. 

photo by Michael Kolster

perfect day?

Yesterday was a perfect day in Maine: sventy-five degrees, blue skies, a few wispy clouds floating by on a warm breeze. Perfect. So I took Calvin outside to enjoy it with him but he was a wreck. Since the multiple and lengthy seizures on Tuesday, and the subsequent antiepileptic medicine increase, he’s a cooked noodle, not even an al dente noodle—a veritable wet blanket.

So yesterday he couldn’t—or wouldn’t—walk by himself (as I hold his harness) or by holding my hand. I had to pretty much support his entire flaccid weight myself. He’d take a few wobbly steps then put his hands out to sit, or he just all together fell. Then I tried holding both of his hands as I shuffled wide-stepped behind him but he just planted his feet firmly and leaned forward. He was only content lying on the grass attempting to eat it and trying to stare at the sun, in which case (which is always) I must cast the shadow of my body over him or he’ll burn his retinas out like the dude with the milky-white eyes on Kung Fu.

Calvin tries anything and everything to catch a glimpse of the precious rays ... through the dappled cover of leafy trees, reflections off of windshields and chrome in the grocer parking lot, even the point of light refracting through the back of his eyeglass lens when the sun is behind him. You name it, he finds a way.

Hats don’t work because he simply lifts his head. When I carry him—which I try to do as little as possible—I prop him on my hip facing away from the burning orb, but he cranes his neck and leans way back to catch a glimpse. He’s mesmerized by that yellow ball of fire. When I take him for walks in the stroller, if the sun is low and shining under his canopy, I have to push him backwards so he doesn’t fixate on the white light.

All this beam-gazing hinders Calvin’s walking. If he’s trying to get his sun-fix he doesn’t look where he is going. And as if his balance wasn’t already sucky enough, good old Mr. Sunshine throws a monkey wrench square into my son’s wandering eyes every time.

Perfect day? On second thought maybe not.

Halloween sun 2007

one tough cookie

I grew up as the runt in a family with five older brothers and a sister. Though it is clear that they all love me, as a kid I got my share of abuse, probably from each of them, in one form or another—noogies, sucker punches, charley horses, takedowns, put-downs, red-bellies, arm twists, dirty tricks. I guess surviving it has made me into one tough cookie.

Since Calvin was born I’ve had my ears boxed, my hair yanked, my kidneys punched, ovaries kicked, jugular vein jerked, eyeballs poked and whacked, nose bit, forehead bonked, neck scraped, arm chomped, stomach scratched, ears tugged, eardrums burst, heart broken, and psyche beat, battered and bruised—but none of it did Calvin do on purpose.

I’ve also had my back stroked, head caressed, knee patted, neck hugged, face nuzzled, belly kneaded, hand held, nose kissed, heart warmed, spirits uplifted and person loved—and all of it he does on purpose.

In an instant Calvin can make this tough cookie melt like butter.

unruly

Last night—after a good day at school, a short nap, and an unusually quiet afternoon—as Calvin was taking a bath he started becoming increasingly manic, spinning and splashing madly and screaming wildly with clenched teeth. I let the water drain early and helped him step out. Wrapped in a towel he walked to our bed with incredible balance as I held him only slightly.

During dinner Calvin remained unruly, erratically kicking his feet and flailing his arms. His shrieks, which pierced my eardrums, were punctuated by eerie cackling and low, blood-curdling screeches of horror flick fame—all complete mania. If that weren’t enough to convince me of an imminent seizure, his remarkable balance while walking after dinner was. I could have released his harness reins allowing him to tool around freely without fear of a fall. I have never seen him walk so well, and thus, I was more than convinced of an approaching seizure.

Throughout the night Calvin tossed and turned, waking several times to drink water from the bottle I give him, and rising at 4:50 a.m. repeatedly slamming his head into the mattress. He quieted after Michael changed his diaper. Perhaps he was silently seizing in his crib as we tried desperately to get a few more winks.

Just past seven, after I had spooned in Calvin's seizure medicines hidden in mounds of creamy yogurt, his face paled slightly, his blue eyes wandering the room. And although he continued chewing a piece of sausage, accepted his water bottle to drink and picked up a slice of cherry, his rote manner and spaciness told me he was having a partial seizure. I watched him carefully and when I saw the right side of his lip pick up, as if tugged by an invisible thread, I hastily removed his tray, unbuckled his lap belt and whisked him to the couch. A minute had already passed when his partial seizure became full on tonic-clonic (grand mal.)

It was violent. His cheeks flushed as his body froze rigid. He had a terrified look on his face as stiff little limbs cramped and crumpled into fierce rhythmic spasms, his eyes furiously blinking and his mouth twitching in morbid unison. My sweet boy sounded as if he were being strangled, the air squeezing in bursts through his taut throat, blue lips to show for it. This unruly menace, which scrambled Calvin’s brain and wasted his body, lasted nearly five minutes.

Within an hour Calvin had three more partial seizures, the last showing signs of morphing into a tonic-clonic again, his bizarre twitching grimace appearing behind the thumb he was sucking. So, I gave him the rectal Valium, and waves of pure sedation lapped over him until at last he was peacefully asleep. He’s so beautiful when he sleeps ... until he wakes up into another seizure, and another, and another.

hook, line and sinker

Our kid was born pretty messed up. He was six weeks premature, was missing a significant amount of the white matter in his brain, had terribly low muscle tone, had trouble breathing on his own, couldn’t nurse, practically couldn’t see and went on to develop a whole host of other ailments, the worst of which is intractable epilepsy—his seizures remain uncontrolled.

Calvin’s continued seizures ruin any chance of a hope for improved development. Because of them his brain is regularly fried by electrical impulses running rampant even in the face of taking powerful drugs meant to thwart them. Because of the seizures his development continues to be—at very best—two steps forward and one step back. The drugs he must take to try and control them can seem as bad as the seizures themselves, causing hideous side effects from headaches and dizziness to lethargy and lack of coordination, not to mention delaying his development even further.

But besides the epilepsy and drugs—and in great part due to them—a major challenge for Calvin and for his caregivers is his inability to walk by himself. Since Calvin took his first few steps just over the age of two he has made little progress toward that goal, especially given five years has passed. Looking through a microscope we can see the changes and are grateful for them, but he never seems to gain the advantage over the disruption of balance and coordination that the seizures and the drugs cause.

Every single day I wonder if Calvin will ever be able to walk by himself. Every single day we remain tethered to each other. Every single day I ache for my own autonomy and for his. But for now, and for the foreseeable future, we are inextricably linked. Whether we like it or not this little fish of ours has got us caught, hook, line and sinker in a tangled web of seemingly endless seizures and drugs.

Please share Cavlin's story with others. Help bring us one step closer to a cure for epilepsy one story at a time.

sweet delights

As a little kid, when I wasn’t doing chores, I spent a lot of time just hanging at home, alone in my room drawing, or loitering in the kitchen with my mom while she cooked. My five older siblings were either swimming their brains out, cavorting with friends or at jobs while my dad was at work.

On rainy days I’d sit at the bar in our kitchen and eye my mother beneath glass-enclosed cabinets as she flitted around the space, her plump form draped in a cotton apron tied over a patchwork printed blouse. Endless muzak streamed from a faux wood box radio perched on top of the refrigerator. I half liked listening to it.

Mom showed me how to bake—cakes, cookies, bread, pies—you name it. Flour and sugar lived side by side in a deep drawer divided by plexiglass, beat up aluminum measuring scoops half buried in the white mounds. She used a long-handled wooden spoon to stir batters and doughs in shiny wide-mouthed mixing bowls. I loved the dull din of moistened wood on metal and its gritty, sugary scrape against rounded sides.

With no exception my mom let me lick the bowl. She was sweet, always leaving ample chunks of sticky, buttery clumps of dough or wide silky smooth swaths of batter. She seemed to enjoy seeing me delight in the goodies, though she was less than happy with the eight cavities I soon developed.

Savory-sweet aromas filled my nostrils as piping hot confections emerged from the oven into thick quilted mitts. My mother wrapped her arms around my elfin frame, mine around her soft, thick, warm middle as raindrops pattered on the shingle roof of our cozy ranch style home. We lingered.

It’d be fun to show Calvin how to bake, to reserve a gooey sweet treasure for him to lick clean, to see his eyes, large as moons, and his impish grin as he buries his face deep into a bowl emerging with a chocolaty smudge on the tip of his nose.

Perhaps in another lifetime.

portraits

Click here to see more photos of Calvin by Michael Kolster

growing up

We’ve lived in this house for almost ten years. I’ve seen neighbors come and go. I’ve watched the newspaper boy grow from a grade schooler into a high schooler, trading his low-rider chopper style banana seat bicycle for a cool mountain bike, his canvas duffel slung low across his chest, pitching papers side-arm across lawns.

The other day as I was sitting with Calvin while he played with the shutters—a favorite pass time of his—a friend rolled by on his scooter, his two young kids in tow on theirs. They waved hello and, from behind the screened window, I remarked on the little girl’s new haircut. Later I met them on the sidewalk near our house as I was coaxing Calvin to walk hand in hand with me down the lane. All three of them gave him hugs. The cute little girl, her bobbed hair springing out in wavy locks beneath a colorful shiny helmet, told me she had just learned to ride a bike. I asked her age, though I knew it, and with a toothy grin, she proudly replied, "seven and three-quarters!" "That's how old I was when I learned to ride a bike," I added, and the handsome older brother chimed in sweetly, "me too!"

They’ll be moving soon, the artist father's career taking him into a new challenge to teach, create and grow. I realize I’ll be missing them, this neighborhood family, these adorable kids who I know, who like Calvin and think of him as their friend, these kids who I so enjoy talking with—something I can’t do with my own son.

Another neighborhood boy and his mother stopped to visit the day before, a boy born the same time Calvin was due. He's got glasses like Calvin does. He likes our dog Rudy, though doesn't like it when Rudy licks him. While I shuffled with Calvin around our car as he banged and bit it—another favorite pass time of his—the mother and I chatted about dogs and school and kitchens and gardens and how much fun we'd had drinking margarita's together the week before. As they were leaving the little boy chirped, "I think Rudy loves you. And he loves Calvin too." I could have cried.

These kids growing up ... just being themselves they do and say so many wonderful things, one of which is to steal my heart.

my pinocchio

Yesterday afternoon I took Calvin into the back yard to practice walking. He has become interested in touching the plants and trees, his vision and engagement with the world having improved of late. I led him across the lawn then onto bark paths amongst flowering rhododendrons, dwarf evergreens and hasta.

If I weren’t holding his hand and/or his harness reins the kid would have fallen every few steps. As it is, I do let him softly fall so he can practice his protective reflexes, and outdoors where the ground is soft is the place to do it. When he falls, if we’re lucky he puts his hands out front to catch himself. Reflexively, he’ll grab a fist full of whatever is on the ground, which is often dirt mixed with bark chips and pine or fir needles. That fist goes straight into his mouth often before I can intercept, but he lets me fish out the debris with a hooked finger. I’m trying to teach him to wipe his hands together to brush the grit off instead of eating it.

Calvin doesn’t understand the fragility of plants—that they can’t support him like a table or a chair. He fell into a small rhododendron and split it down the middle. I grabbed the fanned broken half and angrily whipped it onto the compost pile while thinking out loud, “plants know how to develop and grow, but my kid doesn’t.”

Tense anger quickly turned to pathetic sobs with another fall ... and another ... and another. I feel like a puppeteer with Calvin as my pitiful little marionette—my Pinocchio—suspending him from his harness straps, guiding him with one tug here and another tug there. I wish Calvin could one day, magically, become a real boy who could do real boy things.

help.com puppeteer

ask for what you want

Yes, I have hope. And I guess I'm some sort of an eternal optimist, sometimes seeing only small points of light but ones that vibrate and grow and warm my despair.

Michael warns me that there is no silver bullet when it comes to Calvin, but I have to keep looking for it because it just might exist.

There are people who drive to an event in a busy city and park six blocks away because they think that’s the best they can do. I always look right out in front first and inevitably there’s a big fat juicy watermelon—you know, a primo parking spot—just waiting for me. In San Francisco my friends told me I had amazing parking karma. I always figured—besides driving a sweet 1967 mustang 289—it was simply because I looked for exactly what I wanted instead of settling for second best without even trying.

The same might not be true with Calvin's health—with his epilepsy—but if I don't look for that silver bullet, I most assuredly won’t find it.

photo by Michael Kolster