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