hope is the thing

Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.

—Emily Dickinson 

Emily Dickinson December 10, 1830 – May 15, 1886

the embrace

I awake to a foghorn blowing across San Diego harbor—the familiar sleepy toot seeping through fog and low clouds—and I feel a little at home. Then Mom emerges from her slumber, we wrap our arms around each other and—in the embrace—I know I’m in the right place at the right moment, at least for now.

Mom and I spend much of our time together out on Shelter Island. We stroll the grassy promenade greeting dogs resembling their owners and stopping for long rests on splintered cedar benches. We spy pelicans and seals, the occasional dolphin and massive aircraft miraculously rising from the Naval airstrip at the water’s edge. We sit, often silently, and merely exist. And though she doesn’t much call my name anymore she knows my embrace.

We pass a long wonderful day with my sister Caron and my brother Scott. We lunch and nap and walk and laugh and dine and laugh some more. At Caron’s condo Mom sits next to her like a baby bird being fed bites of dinner from a fork. Just like Calvin, I think. Jokes ricochet off the lazy triangle of our bodies reclined in oversized chairs, cold drinks in our fists.

Scott, groaning from inside the kitchen: “Ouch!”
Christy: “Did you hurt your back?”
Scott: “No, I stabbed myself with a fork.”
Caron, laughing: “In the balls?”
Scott, with a chuckle: “That hurts just thinking about.”
Mom: “Yoooou betcha!”

We all crack up at Scott’s expense and at Mom’s ability to make almost any situation comical with her curses and her quips. She’s still got it, I think.

Sadly, the time comes when I have to take Mom home and put her to bed. On the drive there, both of us tired and weary, we chat:

“How am I going to know where to go?”
“I’m taking you home, Mom.”
“How will I know how to get there?”
“I know where it is ... you don’t need to worry at all.”
“Will you be staying with me?”
“Yep, mom, I’m staying with you.”
“Do your parents mind?”
“You’re my mom.”
“Okay, you’re my mom.”
“No, you are my mom and I’m your daughter.”
“Well, if you say so.”

The conversation loops back on itself a few times over. “You’re tired, aren’t you mom?” She nods. We pull up to the house and Mom takes off her shoes and dons her fleece slippers in the courtyard.

“It’s nice of your parents to let me stay here.”
“This is your home mom, and I’m your daughter. I'm Christy.”

She looks into my face, studies it hard under the dim porch light, and I can see there is no recollection, perhaps even a hint of concern. “I’ll have to think about that one.”

So I put my arms around her—her tiny form melting into mine—and tell her that I love her just as her memory floods back into the embrace, “I love you so much, Hon, and I miss you. I wish you could visit me longer.” And I'm wishing the embrace could last forever.

be kind

Be kind and merciful.  Let no one ever come to you without coming away better, and happier.  

—Mother Teresa

My brother Scott and Mom

touching down

From Tuesday:

A few rows in front of me an infant babbles and blows slobbery raspberries: Something Calvin has never done, I think. The Scottish folks across the aisle are traveling with their red-headed granddaughter: Something I will never do, I think. And then I feel my chest heave, my lip quiver and, with no power to control, the tears begin to silently gush. I don’t care if people see my torment, my twisted, sopping face a dead giveaway. I just don’t want them to ask me what is wrong. Please don’t ask.

Flying can be a lonely experience. Bustling shoulder to shoulder through rolling throngs, strangers crammed into a standing-room-only shuttle-bus, packed tightly into neat rows of seats like eggs in a stretch limo carton and yet feeling as though in a vacuum of sorts, the white noise of jet engines filling the space between ears and yet sucking the life out of souls.

For whatever reason, perhaps the heartbreaking bleat of the baby rows back, I think of the miscarriage I’d had before we got pregnant with Calvin. I was a mere eight weeks along but—even so—very, very happy, my inside ecstasy beaming outwardly. Though it was still early, I’d told my sister and mom when they’d come to visit. We were sitting in front of a rolling fire when Michael and I shared the news. A few days later, after having said that somehow I didn’t feel pregnant anymore, I found myself in a cold sterile room under harsh lights, my tiny dead fetus being scraped out with a knife. I’m convinced the child was a girl. Through curtains of tears and turbulence, I sit imagining her as Calvin’s big sister while a bad sci-fi movie rolls like Big Brother on miniature screens above the passengers’ heads. She’d have been strawberry blond with curls like her baby brother. She’d have been hella strong like her mama and smart like her dad. A pistol. Maybe we’d call her Ginger and she’d bring brilliance and light into our home, levity and hope. Most of all she’d be a companion—friend—to Calvin, who has nothing of the sort in his life besides the adults who care for him.

Here, buckled in my seat and reclined, my heavy legs throbbing from sitting too long, I feel the intense need to hug someone. But who? The wrinkly flight attendant with the bouffant hairdo? The scrawny kid in the next seat with buds plugged into his ears? Then, still sobbing, I go through my mind’s Rolodex and come to my friend Michelle whose son has Down syndrome. I recall what she had said the only time we’ve ever met: that she thanked God she’d had a second child. The image of us makes me want to call her thinking somehow she might know my regret, my sorrow, thinking perhaps she’d suffered, too, in those first few agonizing years. I think of all of my other friends with their happy, lucky kids, lucky lives, lucky futures, like the families on this plane. Then, with eyes closed, my friend Sarah’s shining face appears, one of only two other woman in the world I know who share the experience—the loss perhaps—of having an only child who is afflicted, disabled, wordless, whose health and future hang by a thread.

By now my eyes are dry and weary, my cheeks salty tight and stinging. I am missing Calvin whose being tucked into bed by his daddy right now; alone in his room, no big sister to kiss him goodnight, but happy, cozy and loved nonetheless. Soon I’ll touch down to see my sister and brothers, two of whom have no children, and I’ll wonder if they sometimes feel the absence of a life that could have been. I’ll see my mother whose two eldest sons are estranged from her and I’ll hope she no longer remembers them: too much pain. And I look forward to touching down again to see my sweet boy Calvin who might not even realize that I'd left.

photo by Michael Kolster

barking seals

The harbor seals kept me up last night, their barks flinching me back into rude consciousness each time I’d drift off to sleep. And so each time I felt the sharp stab of hearing Calvin start into one of his seizures, the cries he makes often sounding like a barking dog ... or a seal.

A few hours earlier, soaring at 34,000 feet, I’d found myself missing Calvin and thinking about what might have been—what should have been—if he’d been born healthy. I thought of the girls in Los Angeles and San Diego—dark haired beautiful sister-mermaids—who’ve been buried under perhaps as many seizures as the altitude in feet of this huge hunk of metal rocketing me west, the white noise of jet engines so numbing that I felt only sorrow and tears.

My brother Scott picked me up at the curb in his rental car. It’s always good to see him. I was weary so he shuttled me to my week’s long refuge at my brother Matt and his wife Stacey’s house on the hill just above San Diego harbor. Matt was putting mom to bed so we went in to say goodnight.

“Who’s this?” my brother asked as I leaned over my mother and gave her a hug.
“It’s my darling,” she replied. She wrapped her thin, wrinkled arms around me and I had a fleeting glimpse of a rare moment when she'd had her arms around Calvin.
“Want to say goodnight to Scott?” I asked.
“Well, okay,” she resigned, and we laughed at her nonchalance.

Mom fast asleep, the four of us hung out in the kitchen and talked about chocolate chip cookies, jokes about tapeworms, Grandma Shake’s staccato laugh, seedy motels, loud neighbors and Dad. After my brothers left, Stacey and I talked about Alzheimer's. Then I went upstairs to bed and found this email from Michael:

Calvin had a seizure just before dinner. 3 min. no breathing for first 1:30. Typical I guess.
Got meds in him, now sleeping.
All is ok here.

And not long after I crawled into bed and suffered the barking seals.

ugly duckling

Today I woke up as an ugly duckling with dark oily feathers and a scowling disposition to match. I’m sitting here now in the Portland, Maine Jetport waiting to take off and feeling only slightly better having eaten half of my Snickers bar, much of which is now irritatingly stuck between my teeth.

I suppose the fact that Calvin has been rousing at 4:30 a.m. the past few days did a lot to dampen what might have been a sunny disposition, but at least he didn’t spend the next hour banging the hell out of the bed panel with his head. Nevertheless, he pretty much refused breakfast, kept slapping me in the face, albeit lovingly, and proceeded to bite off and swallow a jagged piece from the end of his hard plastic toothbrush, to which I simply had to drop the F-bomb.

Worry abides. I’ll be gone for a week visiting my eighty-three-year-old mother in San Diego and though I’ve done my best to prepare for the absence I’m still biting my cuticles over a myriad of concerns:

will calvin be okay  will that plastic piece hurt his gut  will he poop it out  will he have a seizure  will michael remember to pick up his meds  will rudy get enough water and walks  will the nurse remember to show up  will calvin be bored out of his mind this weekend  will michael wake up when calvin gets uncovered  will calvin devour splinters from his tray  will calvin start eating better  will the coconut oil help his constipation  will he survive the week without a bad fall  will michael get stressed out  will calvin get sick  will he get the right amount of medicine ...

The drive to the airport was mostly silent until Michael asked, “Are you nervous?” I wondered if he meant about flying or just my usual worry. I told him that I always worry, imagining the girl who just died in her sleep from a seizure, and of the six-year-old boy who had a 48 hour seizure completely out of the blue, went into respiratory arrest, was induced into a coma and—two years later—still suffers seizures daily. “I suppose I worry a little more being gone since I can’t control things ... but I guess I can’t control them anyway.”

About to board the plane and, having written some, I'm feeling a little bit better. I've dislodged all the bits of peanuts from my teeth, I'm experiencing a little sugar high, I'm marveling at some kids half Calvin's size and less than half of Calvin's age who look like Olympians and geniuses compared to him and I'm keenly aware that I have another hunk of Snickers left in my bag. So I guess now it's time for this ugly duckling to take flight. I'll try my very best to leave my worries behind.

walking on air

The Brooklin air was hazy, moist, tingling. The fog set the sky aglow beneath dark clouds, the water’s surface glinting like foil at the horizon where the morning sun slipped through a wedge of open sky. Very simply, it was beautiful and plenty warm, so the four of us set out on a walk.

Calvin held both of our hands as Rudy sniffed and explored the fields flanking the sandy path. I was thrilled to the point of tears that Calvin was walking so well. “I feel so free,” I said to Michael with a quiver in my voice, “like the first time I drove a car without someone in the passenger seat.” It was like walking on air. He understood the feeling of liberation that comes when a child begins to walk hand in hand with relative skill and endurance—enough to leave the stroller behind instead of lugging it along everywhere we go just in case.

Every fifty or one hundred yards our boy balked—stopped to be picked up. And so each time Michael hoisted him up to his hip where Calvin yanked his ears, pulled off his glasses and slimed his face with copious open-mouthed kisses. After a few minutes of rest we’d stand him up like a little toy soldier, grab his hands tightly in our own and march on. The tide was out and we managed to make it all the way to our favorite pair of trees clinging to hunks of soil atop a granite slab. The last time we were here Calvin had to be carried the entire way. That night he’d had a seizure. Later we learned pneumonia was the culprit. Yesterday was the first time since then that we’d seen those trees, which hadn’t grown as much as I’d expected. Their survival seemed to hang by a thread, was dependent upon the frequency and severity of storms eroding their foundations. Just like Calvin, I thought, his survival—his ability to thrive—in great part due to the dampening down of seizures that thunder through his little brain.

But the trees were still there and seemed to be flourishing, weathering the storms and tides well. It seemed fitting that Calvin, after six years, was able to walk amongst them as their brother. And as we headed home across a crushed-shell path I felt cool droplets on my face. But it never rained. Instead, the sun broke through the clouds and warmed our backs as we walked hand in hand with Calvin up the rutted path that stretched out before us.

back to blue hill

I had to pinch myself when I woke up in Brooklin. It’s been over six years since we last visited this sleepy retreat in what’s called Downeast Maine. All the cabins have since been winterized with woodstoves and insulation and the old inn is being painted. A steep but sturdy staircase has replaced a nearly vertical path from bluff to beach. We’d carried Calvin down that embankment when he was just two years old. Later that night he had a seizure, we called 911 and ended up in the nearby Blue Hill hospital. And though it’s one of our most favorite places in the world we haven’t been back since ... until now, our tenth anniversary weekend.

During the night hard rain had soaked the earth. I sat drinking my coffee staring out the cottage windows wishing we could take Calvin and Rudy for a walk. But the long grass was drenched and Calvin doesn’t have rain boots. He doesn’t have them because we can’t seem to manage getting them onto his floppy feet, and even then he’d have trouble walking in them, like trudging knee deep through mud. So, regrettably, we found ourselves stuck inside again with our sweet little ball and chain.

Later we went into town and spotted a local farmer’s market. “Let’s get stuff for dinner,” Michael suggested, so I clipped Rudy on the leash and we walked Calvin hand in hand across the street. There were about a dozen or so vendors selling produce and handmade wooden spoons, jewelry, organic chicken and Mexican food. As we strode between the booths I felt the weight of eyes upon us, on our impish four-eyed, swaggering, pigeon-toed son. A woman standing in line for chicken kindly remarked on Calvin’s motoring skills. “I swim with kids like—,” and she cut herself short. I looked her in the eyes knowingly and, with a knot in my throat, told her how much Calvin likes the water.

I purchased a roasting chicken then joined Michael as he followed Calvin between the parked trucks and cars banging happily on each one. A man from a nearby booth approached us with a bright yellow nylon mesh satchel he’d sewn. He lovingly offered it to Calvin. “Oh, he won’t be able to carry that,” I said, looking into moist eyes handsomely sunken into leathery wrinkles pulled taught across his cheekbones. “They’re good for putting shells into,” he added, to which I explained that Calvin would probably just want to chew it. “Please take it,” he said, “I have thousands of them.” And so I did, then Calvin grabbed it and stuffed it right into his mouth. We all chuckled.

But my throat tightened and I had to turn away, tears wetting my lashes. All this generous spirit toward our retarded kid nearly killed me and, at the very least, reduced me to a little heap of silent sobs of joy and sorrow. I had found myself amongst the kindness of strangers again, up the coast three hours from home in a place called Blue Hill, not far from another called Brooklin, and not surprisingly one of my most favorite spots in the world.

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hell

If you're going through hell, keep going.

—Winston Churchill 

Winston Churchill

friday faves - dark universe

I have a strong desire, when walking Rudy at night, to take my husband’s childhood BB gun and shoot out all of the streetlights in the neighborhood, leaving only the warm orangey glow bleeding out of windows, the occasional lonely twinkling beam from a humming motorcycle, and the smattering of stars above, especially when the full moon is low and bright in the sky like it was last week.

Nights like these remind me of camping in the deserts of eastern Washington when I was a kid: warm winds blowing through the tops of trees making that comforting swooshing sound as I drifted off to sleep, my willowy muscles radiating from a full, hot day in the sun with my friend.

In the deep sapphire sky, as Rudy and I scuffed down the sidewalk, a broad misty streak the shape of an osprey’s spread wing hung like a tapestry above us. Three tiny stars, the handle of the Big Dipper, dunk into a frosty translucent soup. I craned my neck again and the osprey wing had morphed into a menacing skull, drawn and sullen. When we reached the open fields, as we stood in the shadow of a huge pine, the neon moon cast an eerie scene, like those cheap seventies westerns filmed during the day to appear as if it were night, complete with long grotesque shadows and bright, seemingly unnatural, pools of light.

The crickets are out in force right now. I imagine the thousands of fawn colored bugs, like small wooden clothespins, hunkered down amongst dewy blades of grass, some perhaps warming themselves next to a light. They’re like so many of us puny humans, I thought, striving to do their best—just to survive—under an infinite canopy of stars, in a galaxy swirling like silt in a river eddy, in an ever expanding gorgeous dark universe that doesn’t care, just keeps on spinning just as my kid keeps having seizure after seizure after seizure. I thought, here we are with our insignificant little selves, our feet planted firmly in the gravity of this huge gyrating orb caring about people and things that the next guy speeding down the street is oblivious to, and might not care about anyway.

As we turned toward home I peered upwards again. The silken skull had become a feathered arrow, then nothing but a beautiful dissolving silver cloud, a chalk mark wiped scantly with an eraser. The moon streamed through fingers of oaks casting grey webs on the fronts of painted white houses. I looked for my friend Woody seated in the shadows on his porch grasping his usual Manhattan, but he wasn't there. As Rudy and I approached home I thought about all of the people and things I care about most—Calvin, Michael, friends, family, art, beauty. How fortunate I am, in this tiny corner of this obscure world in a universe more vast than imagination allows, and strolling up to the house, a deep red familiar glow pouring through the bathroom window, I thought, how glad I am just to be at home.

Originally posted 09.19.11.

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waiting for me

It’s oppressive black skies that loom overhead;
 

The heart-stopping stir of falling in dreams.
 

It’s vertigo’s creep just at the cliff’s edge;

 

And the white-knuckle angst of horror film scenes.
 

It’s dread of the dawn inside sleepless nights;

 

The pressure I feel at twenty feet deep.

It’s the smothering clasp of sinking in sand;

The insidious fear of a dark narrow street.

It’s the cold sweat of dusk in sinister woods;

 

The grim buzz of cicadas hidden in trees.

It’s the gnawing unease of the telephone ring;

 

And the panic of drifting far out to sea.

It’s the ulcerous pit that's deep in my gut;

The merciless weight of a jungle’s dank heat.

It’s the nerves of an addict thirsting for smack;

 It’s his seizure—I know—that is waiting for me ...

 

Waiting for me ... waiting for me.

 

photo by Michael Kolster

defining epilepsy

I once had a friend who married a woman with one leg, the other having been amputated when she was a girl. When we first met I didn’t know this about his wife, having never met her, only seeing her from afar driving off in her station wagon, her bobbed white coif peeking out from behind the steering wheel. “My wife is an amputee,” he said one day. I was taken aback, not by the fact that his wife had a prosthetic leg but by what he called her, how he defined her. He didn't go on to describe her otherwise. I told him that she wasn’t her cut off leg, her artificial leg, she was a whole, complex person and by calling her an amputee it reduced her, at least in my mind. In any case it bugged me, like when folks call homeless people “bums.” I find it offensive.

I have a similar reaction when someone innocently asks, “is your son an epileptic?” I quietly bristle and reply, “yes, my son has epilepsy,” hoping they’ll note the difference. Not long ago I was having this conversation with a friend I hadn’t seen in several years, explaining my thorn about how certain individuals are defined with one broad term. He had the same reaction and added, thoughtfully, that society doesn’t call someone with cancer “cancerous.”

Perhaps I am overreacting—which I sometimes do—after all, people with diabetes are often called diabetic and somehow I don’t find that offensive, though perhaps I should, and I must often correct myself when referring to kids who have autism. And though many diseases and afflictions have stigmas, epilepsy's is centuries—even millennia—old, and associated with demonic possession, lunacy, and contagion. At one time it was believed to be the product of malign forces and sinful behavior and, in more recent history, something to be ashamed of, its victims seen as somehow culpable. People with epilepsy were often fettered away and shunned by society. Parents of children with the disorder secreted them behind doors. Even today, children with epilepsy are singled out and contemptuously mocked in films.

So yes, my son Calvin has epilepsy, but that is not who he is or what he is—it does not define him. It simply afflicts him and, most regrettably, there’s not a whole lot he can do about it until we find a cure. Until then, he’s a sweet little boy full of smiles and giggles who has to deal, senselessly, with relentless seizures and mountains of mind altering, debilitating drugs. My son Calvin simply embodies—defines—everything one could say about love.

Originally posted 09.06.11.

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May 2011

a lonely moment

“I think if Calvin was normal I wouldn’t worry about not having any bars,” I said to Michael as I glanced down at my cheap-ass 90’s Nokia TracFone. We were sitting atop Morse Mountain’s massive granite shelf looking down through the pines to the salt marsh below. Off in the distance open ocean met with sky in a parity of blues. I could feel gravity sinking me into the hunk of stone that cascaded down beneath my feet into a valley of trees, some felled, brittle and ashen, others like hundreds of outstretched arms.

Being far away from Calvin, not to mention being unreachable, sometimes unnerves me to the point of nearly feeling ill. I kind of get the jitters akin to drinking too much coffee, the caffeine (worry) gushing through my veins with such force I swear I can hear it in my head. And though it had been over seventy days since Calvin’s last obvious seizure (a record for him) the edge is always there, the cloud always casts its long, dark shadow on me, I still look over my shoulder and wait for what I can only believe—after seven years racked with seizures—is the inevitable.

I sat quietly on the bluff with my eyes closed while Michael snapped off several photos. I focused on the meaty click, click, click of his camera’s shutter amidst unbelievable calm. It was beautiful, sunny and as clear as the eye could see. Two hundred feet below us a river snaked through mud and reeds leading to a long, wide beach hugging a grey and white surf. I was with Michael, but I felt lonely. I missed Calvin and, though it’s probably never good to do, I imagined him there with us, scampering around on the dry, rough rock picking up pine cones, chasing chickadees and clowning for his dad’s camera. There was an aching pit in my heart—my gut—yearning for my boy to then come sit in my lap and together spy the osprey floating on thermals. But the scene was starkly incomplete: no pitter-patter or scuff of little sneakers, no sweet voice expressing surprise or glee, no child exploring independently then returning to us like a wave to sand. The moment felt as if someone dear had died, and I held the memory of Calvin close, missing him while at the same time knowing he can never fill that particular and hollow void in my life, even if he was right there beside me.

But luckily for me, Calvin’s pure spirit seeps like juices into many of the empty spaces that having a disabled child who cannot speak, cannot walk by himself, cannot communicate and suffers seizures leaves. His love finds the smallest crevasses filling them with the kind of color and light that no camera can quite capture, and no lonely moment can completely escape.

day seventy-eight

Day seventy-eight. I was just starting to regain some hope ... hope for a better tomorrow, hope that the magnesium citrate was working, hope that Calvin was outgrowing his seizures, hope that we could take him off of all these goddamn anticonvulsant drugs that no doubt are chaining him to this relative developmental limbo—that of an infant-toddler drunk or high on speed.

Yesterday, I’d posted a poem I’d written that morning describing a seizure. My mother-in-law called after she’d read it concerned that Calvin had had one. “No,” I answered, “but I don’t want people to forget.”

Then all the stars conspired against my boy—against us—and culminated in the ugly, dreadful, destructive black hole called seizure. He was sick with a cold. He was constipated. He hadn’t taken his lunchtime supplements, most notably his magnesium citrate, which I’d hung my hat on as the latest silver bullet. He was refusing water and food and—I discovered later—he had a temp of 101.5.

Victoria, Calvin’s behavioral health specialist, had called me in to change Calvin’s second poopy diaper after his second suppository. I entered the room just as Calvin dropped to the floor. Sprawled out at the edge of the rug, his head on the hardwood, Calvin's face was stained red as wine, all four limbs stiff and contorted like mangled driftwood. I turned his face to the side and cupped it in my palm. Victoria watched the clock and called out to me as each minute passed, my boy going breathless and blue at the tips. He felt hot, so I untied his kerchief then clamped his fleece collar between my teeth and, with my free hand, yanked down the zipper. “Victoria, will you take off his shoes?”

Time is elastic during these episodes. A minute can feel like five, especially when your child isn’t breathing. I told Victoria where the rectal Valium was and asked her to bring it to me. I remained on elbows and knees hugging my boy, kissing his hot flesh and coaching him out from the abyss. “C’mon, Calvin, you can do it!” as if he were swimming his final lap of the mile, head down to the finish, arms and legs pumping rhythmically, burning and hungry for oxygen but getting none.

His catatonia seemed to last forever, seemed different than recent seizures, all drawn out and blurry—frozen, really—which scared me even more. I worried it might never end. This could be the one, I thought. Leaning over him I placed my ear to his smooth, pale chest just above where his ribs visibly meet his sternum’s tiny thimble. “Thump ... thump,” went his heart. It felt—sounded—big and slow like an elephant’s inside his little bird body. Nearing four minutes his lips began to rouge and his thumb tried its best to meet with them. These are the signs that tell me it is ending. The rectal Valium remained in its plastic box as I peeled Calvin off of the floor and readied him for bed, his body so limp it nearly sifted through my hands.

An hour later Calvin roused from his twitching slumber, so we brought him downstairs and spooned nine anticonvulsant pills into his mouth. So dutiful, that boy, I thought. He wrapped his twiggy arms around my neck, mine nearly wrapping twice around his delicate frame, still hot. Upstairs he was restless so I climbed into bed with him and warmed his frigid feet with my hands. He fell fast asleep to Baby Mozart and the homey sounds and smells of Michael’s chicken soup in the making.

Victoria wrote to me last night. After some very kind and concerned sentiments she added, “This is a day I will never forget.” Neither will I, I thought.

And today—most regrettably—we've sprung back to day one ... again.

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Soft Watch at the Moment of First Explosion, Salvador Dalí, c.1954

no my son

sleeping fog

piercing howl

baying dog?

no.

my son

rushing feet

hearts sink

wet lashes

blink, blink

sweet soft

freezes stiff

iron rod?

no.

my son

fists clench

tremble, ache

not a breath

draws, escapes

strident rasp

foaming mouth

rabid gasp?

no.

my son

tiny limbs

cramp, squeeze

brain and body

seize, seize

ashen face

glowing stare

moon in space?

no.

my son

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Give to cure epilepsy: http://www.calvinscure.com

trends

Don't follow trends, start trends.

—Frank Capra

Frank Capra, May 18, 1897 – September 3, 1991

friday faves - daddykiss

I love to see how much Calvin loves his daddy. It is as plain as day, as clear as the nose on my face, as evident as the sun coming up through the trees, as beautiful as the smile on Calvin's face when Michael rubs bristly cheeks into Calvin's soft ones. And after some snuggles and hugs and giggles and squeals Calvin gives his daddy a kiss, opens his mouth wide and rests it on Michael’s nose, his forehead, his cheek—gently—and Michael responds, “ohhhhhhhhh—daddykiss!” at which Calvin smiles again, knowingly.

In that moment, who cares if the sun never comes up. I’ve got my very own sparkling rays of light right here to warm my soul.

kindness and acceptance

Mary strapped him into his green machine and he motored off toward the door as if he knew where he was headed ... because he did. The three of us walked from his “functional skills” class down the long shiny hallway to his mainstream homeroom, Calvin’s acid-green gait trainer wheeling along under his command allowing him to be mostly independent. He went straight there. The second-graders were seated on the rug facing their teacher when we entered. A few of the children turned and said, “Hi Calvin!” The teacher gave up her chair for me, a purple one with sparkly paint, the color that stands for epilepsy awareness, I thought.

I sat and told the children a little bit about Calvin, about how he’d been born six weeks early and that his brain hadn’t formed the way their brains had. The children sat quietly, some cross-legged, others kneeling, all with sober, attentive faces. I went on to explain that Calvin's brain has roadblocks that make learning things difficult for him. Calvin sat at the back edge of the group squirming in Mary’s lap and giving her hugs, but he remained quiet as I spoke and I wondered if he knew it was his mama talking to the group. “Calvin has epilepsy,” I added, “Do any of you know what epilepsy is?” There was no show of hands, so I described how seizures are like thunderstorms that cause the lights to flicker and sometimes go out in Calvin’s brain making it even harder for him to learn. Then I opened the floor for questions about my boy.

“Will Calvin ever talk?” A pretty brunette girl asked.
“I’m not sure,” and I applauded her for her good question.
“When Calvin was born did he come out talking regular?” a cute boy in the back tagged on.
“No," I answered, "but when Calvin was a year and a half, before he got epilepsy, he said ‘Mama’ once."

Then I mentioned the seizure drugs. I explained how they make Calvin's development even slower and cause him to be dizzy and sleepy and limit his ability to walk without falling. “What do seizures look like?” another boy asked, and I did my best to simulate drop seizures and absence seizures and tonic-clonic seizures. “Those are the kind that Calvin has,” I told them. And then came the questions I found difficult to answer:

“Can people die from epilepsy?” asked the little brunette at my feet in a clear voice.
“Well, yes they can, if a seizure doesn’t stop,” I answered, purposefully avoiding the mention of the drownings, the suffocations, the fatal head injuries and the burns that seizures can cause.
“What kinds of toys does Calvin like to play with?” asked a bright, blond-haired kid in the front.
“He likes toys that rattle and light up and make music and sounds,” painfully aware of my wish to say that he liked Legos and bicycles and puzzles.

The children remained solemn, but I felt like I got through to them, their pure minds like blank chalk boards eager for beauty and love and thoughtfulness to be scrawled all over them. I was glad to see some of Calvin’s classmates from last year seated in the group; their faces told me he’d have some friends. And though they might not play with him the way kids do—four square, cards, tag, catch—they’d show him kindness and acceptance, which is all I can really hope for at this point. But kindness and acceptance go a long way in my book ... a really, really long way.

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Give to cure epilepsy: http://www.calvinscure.com

off to the side

The boy in the photograph—like his classmates standing on the bleachers—is clean-cut, wearing dark slacks and a white shirt. And if it were not for one thing, I’d be wondering why he is singled out, sequestered far from the rest of the choir. That one thing is his wheelchair. The boy has cerebral palsy, and instead of wheeling him over next to his classmates the teacher leaves him off to the side near the door of the gym. From there the boy watches his friends sing.

In his first year of kindergarten, Calvin was that boy. I’d arrived at the school’s gymnasium just as the kinderconcert was beginning. Calvin’s pint-sized classmates stood in rows atop aluminum bleachers on the stage. I looked eagerly for my boy and his one-on-one aide, but they were nowhere to be found. Then, scanning the crowd, I spotted the two of them seated on the floor. I made my way over. “Why isn’t Calvin up there with his classmates?” I asked curiously, disappointedly. His aide explained that they thought the commotion and singing might overstimulate Calvin, perhaps irritate him. I’d have told them that Calvin probably wouldn’t mind.

The kid in the Huffington Post article has Down syndrome. The airline refused to let him fly first class (though his family had splurged on the tickets) citing that the teen was a “flight risk.” Lies about the boy’s behavior had been told by an airline representative who said that he’d been running around in the gate area, though the video his mother took with her phone showed him sitting quietly playing with his hat.

I was visiting Calvin and his aide at school one day last year, or perhaps it was the year before—time blurring into itself because of Calvin’s slow-as-molasses development. We were all walking down the hallway together. Calvin was in the lead followed closely by his aide, her tight grip on his slack harness allowing him to feel his body in space and to learn to right himself on his own. A girl of nine, or so, approached us. “Is he a dog?” she asked me. I knew the girl was referring to the fact that my son was wearing a harness. “No,” I said, “but are you a pig?” She frowned and sulked away.

When I was in grade school, the disabled kids rode their own bus which deposited them with their wheelchairs and braces and spastic limbs in front a free-standing cinder block building, which was off to the side of the school's cul-de-sac. I rarely saw those kids—my peers—I never remember them being on the playground with the rest of us and none of them became my friend.

I'm going to visit Calvin's mainstream second grade class today to talk to them about epilepsy and answer any questions they might have about Calvin, who can't talk to them himself. They'll be sitting on the floor in a group and, hopefully, Calvin and his fabulous one-on-one, Mary, won't be off to the side.

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Give to cure epilepsy: http://www.calvinscure.com

Calvin with his one-on-one, Mary

sharing the load

As kids, one of the first things we learn from our parents is to share: to share our dolls, toy cars and Legos with our siblings, to share our favorite snack with friends, even to share time on the playground swing set with a stranger’s child. Then, as soon as we can speak we are taught to tell the truth. And when we enter school we are told not to cheat on tests, and even if we succumb to the temptation (I did a few times) we know in our hearts that it is wrong. In sports, we learn that an unfair advantage, such as steroid use, is unacceptable, and that everyone should have the same opportunity at winning the gold. And as I think about 9/11, its eleventh anniversary upon us, I remember the way that the people of New York—of our nation—came together, helped out their fellow man, the strong pulling the weak out from under the rubble when they couldn’t get out themselves.

What’s so different today? I wonder. Where did these core values, these basic premises of human decency get so blurred, so skewed, so completely forgotten by some? I ask myself the same question over and over and over.

Readers sometimes comment on my blog, noting the theme of how it takes an entire village to raise a child. They understand how I find strength in friends and neighbors who sometimes help me with the burden of caring for my disabled boy. I’m better for it, and my friends tell me that they are too. I can see in their eyes the great reward in knowing they are helping me out. And they don’t have to; most have children of their own to rear, stresses of their own to face, problems to solve, desires to sate. But no matter who we are, we each have a gift—something special to offer. What a shame if we kept those gifts to ourselves, tucked them away into little boxes and shoved them under our pillow or to the back of a drawer for safe keeping.

Since Calvin’s epilepsy diagnosis six years ago, one of my greatest rewards has become helping other families whose children have just been diagnosed with epilepsy, Down syndrome or other debilitating neurological conditions. Through Calvin, I have learned that I, too, have a gift. I want to share it with the world. And what an amazing world this could be if each and every one of us shared a bit of what we have—whatever that might be—with others. If only we could think of this wonderful melting pot of a nation as our precious village, one in which we look out for each other, help each other out, lift each other up. I imagine Bedford Falls, the town depicted in Frank Capra’s film It’s a Wonderful Life where—because of one humble, honest, hard-working, self-sacrificing man—others who’d had a difficult start in life, who were down on their luck, could get a leg up. And those recipients in turn contributed and enriched the community with their talent, hard work, brotherhood, generosity, gratitude, hope, compassion and the jewel of a different perspective.

I think back to this past April, to the time when Michael was away for over three weeks and Calvin was at his all-time worst behavior, screaming much of the time, not eating, yanking my hair and flailing wildly in his high chair. I couldn’t be sure of the source because he can’t tell me, but I blame his anticonvulsant drugs. In Michael’s absence, my dear friend, Akiko, flew up from New York to help me for a long weekend. On the heels of her departure my Sister, Caron, came all the way from San Diego and stayed eight days. She watered the plants, vacuumed the house, dusted the furniture, washed loads of laundry, fed Calvin, changed his diapers, walked around with him, made me laugh and very simply liberated me. On each of the other weekend days after my sister left, different girlfriends came to help me take care of Calvin for an hour, or so, so that I could get some chores done and to give my shoulders, back and psyche a break. And, there is no doubt in my mind that if I had asked any one of my neighbors the same, they’d have done it too.

Camaraderie and support: that’s where it’s at: the reaping of the many rewards that bearing the load together brings, of being responsible to each other and for each other. So, how the heck do these ideals gets lost on some people? I can only imagine that when one hides something away for fear of losing it, it’s easy to forget that it’s even there to give.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Lyle Owerko–Gamma

lonesome

As a rule, I’m not a lonely kind of person. On the contrary, even though I can be a social butterfly, I like time by myself ... plenty. Friday, though, that empty feeling came over me like a cloud while strolling across an open field with Rudy. I was simply longing for Calvin to be there walking by my side like mothers and sons are meant to do.

It was a gorgeous fall day, seventy clear degrees and slightly windy. I figured a motorcycle ride might be in order, that perhaps the rush would somehow boost my adrenaline, raise my spirits.

I rode a couple of towns north, crossed a low bridge nearly grazing the waters of the tidal river below it, rumbled over some train tracks and into a lot sloping down to the water. I cut the engine, hung my helmet in the crook of my arm and trudged down to a bench at the edge of the grassy bank. There—alone—I had a good cry.

Through bleary eyes I gazed out over the smooth water. I leaned forward peering over the rocky edge into the mud. It looked like the kind of bank that I used to catch frogs in as a kid, something my dad taught me how to do. No frogs here: brackish. I should be skipping stones with Calvin, I thought. The rock in my heart grew heavier imagining his little bee legs taking him in loops around the park, finding the perfect flat smooth stones I did as a child and hurling them side-armed across the water’s surface with me. How sweet would it be if, running to me with cupped hands, he'd declare, "look Mama, I got a frog!" Pure bliss, I thought. Closing my eyes, the late sun’s sorry angle gave me pause. I never liked this time of day this time of year. The lengthening shadows meant I had to leave my neighborhood pals behind, saunter down our pitted gravely lane to get ready for dinner, that soon after it’d be bedtime, what with school the next day. Made me sad.

My hands smoothed over warm slats of the weathered wooden bench beneath me. Whitish cement buttresses the color and texture of bone book-ended the slats. I recalled my father’s ashes, the same color and grain of these two porous slabs. My mom had given us all little jars filled with them. The ashes I got were in a Tostitos salsa jar. I knew Dad would’ve found that humorous and so it made me smile. Perfect, I thought. Shaking the jar sounded just as you’d imagine, like a jar of coarse dirt, the inside glass coated with chalky residue. I had spread his ashes in the seas of both coasts, poured some in my hand, fingered the dust and pebbly grains of bone around on my palm, even tasted some on the tip of my tongue before casting them away in the wind. Ours was a perfect relationship between father and daughter, I thought. At least it seems that way to me now.

A dog’s bark echoed from just up the lane, its owner and her little girl, Calvin’s age, crossing the quiet road, their happy voices trailing down to meet the water. My heart sunk another notch. It was a lonesome sound amongst the silence save the wind rustling through trees, seemed like a ghost town. I half expected to see a tumbleweed roll by. It felt like the town in To Kill a Mockingbird, all black and white like the words on the page. Across the river a tiny ferry boat bobbed tethered to a shifting dock—wood rubbing against wood squawking exactly like wild geese. I'm all alone, I thought. Nobody knows I’m here. Even if I’d told Calvin he’d have no clue, couldn’t find me, wouldn’t look for me or wonder where I was. When I’m gone he doesn’t miss me. We’ll never have that kind of bond I long for, the kind of connection that grows with the years, the most important link between any two beings. The kind where we talk about hopes, dreams, fears, goals, desires, love, risks, failures, hardships—each conversation gouging a deeper, more beautiful vein in soft bark that says, we were here ... together. That just isn’t ever going to happen, and it makes me lonesome, so very lonesome sometimes.

My tears having dried into trails of salt on my cheeks, I jumped back on my bike and sailed off. Cool shadows had formed along the winding road as the daylight dwindled. My knuckles got cold. And though Calvin would have no idea I’d left or where I had been, maybe it didn’t really matter, I tried to tell myself that anyway. After all, I was completely thrilled about the notion of seeing him and having him wrap his little arms around my neck when I finally got back home. Then I won't be lonesome anymore.

Originally published 10.02.11.

photo by Michael Kolster

the best remedy

Patience is the best remedy for every trouble.   

—Titus Maccius Plautus

photo by Michael Kolster

friday faves - kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young and vivacious manager, wearing her slim peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large hand painted bowls filled with rum and fruit juice.

As the night wore on, and a green pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the girl (and I don’t use the word in the pejorative sense that many men and women who I know use it) can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. The dose was changed with no apology or recognition of error.

My friend listened to me describe the painful, bloody emergency intubation that my babe had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin before and thus it was carried out amidst his thrashing and terrified shrieks of pain. I told her about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which then I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who can’t walk by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength (luckily we and the boys are resilient as spiders silk, the strongest fiber known to man.) These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy drop earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

 

Originally published 09.12.11

 

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Give to cure epilepsy: http://www.calvinscure.com

 

photo by Michael Kolster

gen's story

Written by Jeff Wilson, Gen's dad

If you are reading this, it is probably because someone you love suffers from seizures. I am writing this because on June 22, 2007, I lost my beautiful nineteen-year-old daughter Generose as the result of a seizure. I just pray I can reach out and help other families so they do not go through the devastation my family lives through everyday. If this helps raise awareness of epilepsy, or raises contributions to further epilepsy research, then my pain is eased a little. It will never go away because the memory of Gen will always be with me.

Gen had been having grand mal seizures since she was about sixteen, although we now suspect she was having seizures before then. She would have a “blond moment,” where she would pause for a brief second while talking. This was probably the start of her seizures but we didn’t know and thought it was more of a way she gathered attention or played the role of a “blond.” We joked about it.

Her friends revealed to us that every once in a while they noticed Gen’s eyes roll up and lock for a few seconds. In high school, she “blacked out.” The school notified us, and we took her to a neurologist. He told us she was having seizures, and started her on medication right away. Her first big seizure happened at a hockey game and that was the first of about six trips by ambulance to the emergency room over the next two years.

As she experienced more and more seizures, the medications were increased. Getting a teenager to understand the importance of taking medication on a regular schedule seemed impossible. Gen had seizures at her high school, at a restaurant, at her dorm room in college, at home a few times. These are the ones we know about; there’s no telling if she had them during the night in bed or other places. We suspect she had one in the bathroom at work, after the prom, and once in a car while waiting for her brother.

It was not until after Gen’s death that we realized so many things can spark a seizure—change in temperature, stress, infections, menstrual cycles, hormones, lack of sleep, bright lights . . . the list goes on and on. You can’t predict seizures. So do you live in a bubble? Think about it; most normal activities can turn disastrous when a seizure happens. Gen suffered a seizure and drowned while taking a relaxing bath in the garden tub.

Gen was burning the candle at both ends—going to college, working, and living life to the fullest with her enormous group of friends. Gen was definitely the instigator of social activities, and played the role of counselor for the lovelorn. The devastation felt by her family has been equally felt by her friends, who in reality were also her family. We have planted trees at her high school, purchased bracelets and lanyards in her memory, and started web sites on Facebook.com in her memory. In death, Gen continues to give; from donated tissue for research, to corneas to give sight to two individuals—even clothes for the less fortunate.

Writing this is not easy. But when I read the facts that the second most common cause of disability or death in children fourteen and younger is seizures, my heart goes out to all that may be faced with the physical, emotional, psychological, and spiritual drain from losing a child. I had to tell Gen’s story; that’s how she would have done it.

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Give to cure epilepsy: http://www.calvinscure.com

life is good?

He told me that I should smile. Jerked out of my meditative state, I glanced up from the pavement where I was watching my feet go step by step in the puddles, and thinking about my kid on his first day of school. Who was this stranger? What was he trying to prove by saying that I should smile? My pensive face reflexively cracked, my lips parting in a sour crescent barely enough to flash a bit of tooth. He was satisfied. “Life’s not that bad,” he said, and went on his merry way.

I wondered how this guy thought he was the authority on how life is good—a live version of that annoying, smiley-faced stick-figure plastered on pastel t-shirts and coffee mugs shown playing golf, surfing, mountain-biking. And I realized how often we project ourselves onto others rather than stepping back to absorb their realities, imagining theirs as our own. And as I contemplated this man’s demand while I walked Rudy home through sprinkling rain, a stream of consciousness washed over me, and I asked myself these questions:

Would that man have told me to smile if he’d known my kid might have just suffered a seizure? Would that woman have called the homeless person a bum and stepped over his crumpled body on her way to get a latte had she once lost her job, her family, her home, her everything? Would that other man have called his assertive coworker a bitch if he’d been a woman earning just three-quarters of her colleague’s pay? Would that man have said what he said—believed what he believes—had his own wife been raped and gotten pregnant? Would the people denying those genocides find the truth if their religion—their people—had been persecuted for centuries? Would the men and women who oppose same-sex marriage feel differently if they had beloved friends or family who are gay? Would that man feel differently about racial profiling if his demographic was the one society unjustly targeted to the point of near epidemic incarceration? Would the person who thinks “everyone for themselves” feel differently if their child became gravely ill or was denied coverage then couldn’t afford the treatment?

I rolled these queries—these images—around in my head and wondered why so many of our hearts are hardened to the plight of others less privileged. Why are we so suspicious, so fearful, so ugly and hateful, so hell-bent on hoarding the American Dream? I wish we could all walk in each others shoes, not for a mile but for a time and—at the very least—step out of our own and stand barefoot, truly witnessing what it is to be human, to be uncomfortable, to be vulnerable, to understand that life is not always good for everyone, even though it might be good for us.
 
Wouldn’t a smile from that man have been enough? I thought. No. He felt he had to go and tell me that I should smile without even knowing who I was or what I was all about.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

charlie's cure (video)

When Calvin was four years old, after five drugs and one dietary therapy had failed to control his seizures, we decided to try him on the restrictive, rigorous Ketogenic diet. I called the Charlie Foundation asking them to recommend a medical team who could facilitate the diet. Jim Abrahams called me back and told me his story. It was compelling, it was heart wrenching and it was full of hope.

If you can't view the video, please click HERE.

More on the Ketogenic diet at The Charlie Foundation.

what else really matters?

Over the course of the eight months that I watched my belly ripen and swell, I found myself wondering what our firstborn child would be like. If it was a girl, her name might be Ruby, Ginger or Ella; if a boy, the only name my husband Michael and I both liked—above and beyond any other—was Calvin.

I had a dream that our boy was born with tussled blond hair chatting up a storm, already sprouting baby teeth in abbreviated rows of little pearls. I wondered who he’d look like most, even though at a glance Michael and I sometimes resemble each other as if kin. I figured our kid would grow up to be tall and thin like his dad, his grandpa and great grandpa, and athletic like many of his relatives on both sides. Maybe he’d be a collegiate swimmer like his mom and her brothers, but if not, at the very least he’d swim like a fish. Perhaps he’d run as graceful as a gazelle and hurl the javelin with the skill of the grandpa who he never met. Maybe he’d pole vault like his Uncle Matt, get caught in a rugby scrum like his pa, or speed-skate in the fast form of Michael’s mom. I imagined our child pitching a baseball through the center of a tire hanging from a rope. As a Little-Leaguer, his Uncle Scott did, bringing home the prize minibike that my dad tried riding. With clouds of blue smoke in his wake, Dad popped a wheelie (not on purpose) taking out a chunk of turf with his bald head. With any luck our kid will not grow up bald, I thought, then smiled.

I wondered if our child would grow up to play the guitar as well as my grandmother and her sister did on San Jose radio in the early 1900s. Might he surpass his dad’s skill on the stringed instrument, or perhaps enjoy singing, instead? Would he be an educator like his father, and his father's father, or a successful coach like his mama and her siblings? Would he speak several languages and travel the world? Would he be a photographer? An avid reader? A handyman? A cook? Would he pick up a pencil and draw like a fiend following in his mama’s footsteps? Would he have a way with words? One thing’s for sure, I thought, he’d have a good sense of humor. Maybe he’d turn out completely kooky like his mama. I had hoped so.

We’d teach our boy about compassion and to love nature, to help out his fellow man—particularly the underdog—to maintain a healthy skepticism, to respect women, to be curious about the universe, to take risks. We’d show him the value of progressivism and the shortfalls of convention. He’d be humble and kind, a free-thinker, a problem solver. He’d learn to love and embrace people from all walks of life—his heart to thwart hatred, greed and selfishness.

Most of all, our boy would be absolutely beautiful, inside and out. Little did we know, that’s all he would ever be. But, in the grand scheme of things, what else really matters?

June 2007

stardust and golden

Well then can I walk beside you
I have come to lose the smog
And I feel as I'm a cog in something turning
And maybe it's the time of year
Yes and maybe it's the time of man
And I don't know who I am
But life is for learning

We are stardust, we are golden
We are billion year old carbon
And we got to get ourselves back to the garden 

—Joni Mitchell, from Woodstock

Every once in a while I see someone who reminds me of my dad: tall, thin, mostly bald with a band of white hair like a wreath slung around the back of his head. My dad would have been 87 this year. He was a pillar of strength and he should have lived far longer had it not been for the cancer that had completely consumed him by the age of seventy.

Michael and I watched a movie last night that made me think of my dad, of when he was sick. Christopher Plummer was the man who, in some ways, reminded me of him. As I watched the scenes of Hal in the hospital, Hal with his son, Hal at home in his hospice bed, I regretted not being at my dad’s side in those final weeks and days. When I said as much over coffee this morning, Michael reminded me that my family had kept things from me, had tried to shelter me, hadn’t told me until he'd returned home that—weeks before his death—Dad had been in the hospital, twice. I’ve always resented that. Perhaps I’d have jumped on a plane to be there sitting next to his hospital bed as my father battled pneumonia, been able to walk with him down the shiny linoleum hallways wheeling his IV along on a tall, aluminum pole. But my family, thinking it would be better for me, didn’t let on, as opposed to honoring my right to know as Dad's youngest adult child.

And so today I am missing my dad and thinking of that last telephone conversation we had from across the country on the day he died. Perhaps he’d known I’d been with him in spirit every day while he was sick. Every night, in my San Francisco flat, I’d dim the living room lights, roll up the white wool Berber rug, light some candles and a joint and perform a sort of meditative rain dance to this one particularly beautiful, eerie, cancerous song, hoping for Dad to finally be at peace. Then I’d cry for him.

Thinking of you dad. You are stardust, you are golden. But then again, you always were.

Me and Dad, 1965

crystal ball

It's very easy to kick myself. I'm good at it, especially since Calvin was born. I wish I had some crystal ball into which I could gaze and know all the answers in a blink of an eye. Instead, it takes months—years sometimes—just to begin to figure out the riddle of Calvin's seizures with each various treatment we try in an effort to thwart them, send them off course, obliterate them. As a result, I often look back and kick myself for acting too slowly in certain circumstances.

Why did we keep Calvin on that Ketogenic diet for two whole years when it didn't make a dent in his seizures? I thought, as I watched and listened—headphones on—to the neurologist sitting next to me in the studio of a recent radio call-in show about epilepsy. He said what I already knew: that it only takes a few days or weeks to determine if the Ketogenic diet will be effective. For some, it is very effective. For Calvin, it never was. Instead, it weakened him and robbed his ability to do so many things he'd just mastered, like crawling up the stairs and getting into standing by himself. Why so long? Because I am cautious and hopeful, perhaps too hopeful, holding on with a white-knuckle grip to each new treatment as if my child's life depended on it (which it does) thinking each one will be the silver bullet if I just give it enough of a chance.

I wish someone would shake me and say, it's been two years ... enough already! I suppose the universe did that for me when Calvin stopped tolerating the diet, when his seizures doubled, the result of weaning him from one of the three drugs he'd been on that made him into such a complete zombie. But every incremental change from one drug to another—off of one diet and on to another—takes so goddamn long it's excruciating. Would someone please invent that crystal ball? Until then, the only glassy orbs I can get lost in will be Calvin's indigo eyes and, while they say a lot, they only tell me half the story.

May 2005