stone cold silent

Halloween eve. I could tell by the tone of her voice that something was wrong. “Christy,” nurse Bebe said, “Calvin is spacing out way too long.” I dropped the knife into the kitchen sink and sped around the corner to the next room. Calvin was standing frozen like a statue in front of Bebe gazing blankly into nothingness. Even in the dim lamplight, the black night masking each window, his skin shed a ghostly glow. I knelt down and put my face near his, called his name, “Calvin.” No response. He was having a seizure. I picked his stiff little body up and laid him sideways on the couch. I stroked his hair, kissed his neck and called his name. For a moment, he tried to sit up, wrapped his arms around my neck and, with a look of foreboding as if to say mama make it stop, he kissed my nose. I hoped he might come out of it, but I was wrong. So I laid his rigid body back down and we watched him there, stone cold silent, and though his nurse counted off the minutes, time stood still.

Calvin doesn’t breathe during the first part of his seizures, his skin white as marble, his lips cold and grey. Compared to others, this one was slightly different—his body nearly motionless save a hint of silent trembling. At two or three minutes a few raspy gulps drew air into his lungs, the precious oxygen painting his lips pale rose by degrees. But he wasn’t with us, still trapped within the seizure’s opaque veil. Closing in on five minutes Calvin finally began moving and whimpering in a way that signals it is over, only this time he didn’t cry. We propped him up onto a pillow where we scrambled to give him his seizure meds before he fell asleep. In a daze, he obliged. What a good boy, my sweet, sweet Calvin.

It had only been seventeen days since his last seizure, which seems to be a new normal, a far cry from the forty-plus—even seventy-eight—day stints he enjoyed throughout the spring and summer. And we haven’t a clue as to why his body and brain have lost that improved threshold. It's maddening.

After we put Calvin to bed I felt myself sweating. I sat on the couch where we laid him during the seizure. Nausea washed over my gut and I felt a slight headache kicking in. With each passing seizure, each passing month, year, new medication, new dietary treatment, I feel hope slipping through my fingers like sand. We just can’t seem to get a foothold. No matter how hard we dig in the seizure-control keeps slipping away. It appears more and more likely as time goes by that—without a cure for epilepsy—Calvin will be sentenced to a life of repeated seizures, drugs and side effects that rob him of the chance to reach his full potential, which is most dispiriting to say the least.

Every Halloween I am reminded of past ones: of the one where a nurse mistakenly gave Calvin the wrong dose (too much) of seizure medicine, of the one when he suffered a bad seizure, of the one when he endured a painful circumcision meant to alleviate frequent urinary tract infections that spiked fevers triggering seizures, of the ones when he’d cry and scream so much that I’d greet trick-or-treaters with red eyes and black tears streaming down my face. I didn’t care if they saw, didn't care if it scared them, couldn't have helped it anyway.

But thankfully, Calvin seems to bounce back from these seizures like the little trooper that he is. He’s in school today wearing jeans adorned with glitter and spidery purple-black-orange Halloween patches and a skinny jack-o’-lantern shirt. Tonight, just like every Halloween, when the kids come knocking on my door asking for treats, Calvin will be in his pajamas ready for bed and I'll be the sorry witch that greets them with a bowl full of candy and, with any luck, a chocolatey grin on my face.

Halloween 2009

trees in your orchard

The trees in your orchard . . . give that they may live, for to withhold is to perish.
 

—Kahlil Gibran

Grandmas Apple Tree by Ginette Callaway

don't go back

There are some people in this world who are pure souls. My sweet little retarded boy Calvin is one of them. He affirms it with a sea of unconditional love, his lack of desire to hurt or conquer, his impartiality, and his indifference to material things—all qualities I believe can heal the world. At the same time he expresses a most admirable (though sometimes irksome), determination. And he is a boy who has a penchant to do what is right even when it is difficult.

Of late, Calvin has moved me to ponder this country, which our family is fortunate enough to call home. I feel grateful for the day that this nation of immigrants was founded. It was a landmark moment that represented many freedoms, a time that underscored the escape from religious persecution, the iron hand of abandoned monarchies and the shackles of caste societies. But this utopian birth of a nation had been bloodied by its ruthless slaughter of our indigenous people and the abominable institution of slavery that reigned for years in the name of oppression and profit, even in our forefather’s homes. It was a dark time when poor men, women and blacks were barred from the right to vote or own property, a time when good medical care and a decent education were reserved for the privileged few.

But thanks to the courage, suffering and tenacity of champions like Susan B. Anthony and Frederick Douglass, slavery was eventually abolished and blacks and women won their right to vote. The civil rights movement in this country worked to end legal discrimination and segregation, and the sexual revolution of the sixties and seventies promoted—among other things—birth control, thus improving the lives of millions of women and families. We have evolved into a country in which our veterans are once again revered, men and women of different races and people with epilepsy can marry, and our disabled people have shed the weight of shame, where now only the ignorant few cast their ridicule and scornful glares.

I reflect on our history and marvel at how far we have come despite so much bloodshed, subjugation, cruelty, injustice, and suppression. We have reached a better place. But there is so much more to do, so many who still stand in the cold shadow of inequality, pressed under the thumb of those who would deny them the same freedoms that they themselves—who profess to promote liberty—enjoy. And there are those who would take away the precious freedoms and advances fought so hard to attain, and who would gladly cast us aside like a bit of trash, or climb on our backs just to get to the top, never once stepping into our shoes.

And so I look back to see where we have come from, and to learn. But more so, I look forward to a society in which everyone is treated equally—for we were born as equals—one in which each of us is free to enjoy life, liberty and the pursuit of happiness, where condescending slurs, misogynous attitudes and biased policies against women and girls are eradicated, where everyone can marry the one they love, where our criminal justice system isn’t an ugly mirror of blatant racism, where the gap between the haves and the have-nots gets narrower not wider, where corporations are not considered people (people bleed), where the separation of church and state still abides, where everyone who wants to go to college can do so without getting sunk, where sick little kids like my Calvin are not at risk of losing or being denied health insurance. I dream of a homeland in which the value of justice and inclusiveness are a powerful and noble example to the world, not one that would promote bigotry, exclusivity and the accumulation of massive wealth and brute power for the privileged few over opportunity, well-being and equality for every last one of its people.

And so, with the pure spirit of my son Calvin in mind, I think to myself out loud: lead by example, move forward, embrace progress, keep on truckin’, stay the course. And be reminded to keep looking back ... but just don’t go there.

Susan Brownell Anthony

Frederick Douglass

Calvin James Kolster

lives matter

The idea that some lives matter less is the root of all that's wrong with the world.

―Tracy Kidder, from Mountains beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World

Depression era girl, Photographer unknown

heartbreak hotels

Every time I visit Calvin’s grade school it’s like checking into a heartbreak hotel. I walk the long corridors, my boots scuffing on buffed linoleum tiles as little munchkins pass me by swift and stealthy as fairies. This week the hallways are plastered with large cut-and-glue portraits of Native Americans carved from thick sheets of paper. The images create a melange of brown, russet and tan hues reminiscent of desert, wild horses, prairie and suede. I look closer to see feathers sprouting from headdresses, dramatic face paint and cut-fringe garments. These scores of native faces stare silently as I make my way to Calvin’s life skills class located near the end of what feels like an indigenous longhouse.

Halfway down the empty hall a little girl about seven or eight brushes a soft blond curl from her forehead as our eyes meet. She smiles up at me forming a dimple in her cheek. I am reminded of the daughter I might have had, the one whose eyes I could look into and they’d look back at me—something my son rarely does. I feel her sweet warm breeze just as a hollow pit gnaws into my gut. Again, I regard the students’ work on the walls, remembering the artist I had been in school and thinking, if things hadn’t gone so wrong, one of these portraits would’ve been Calvin’s.

Once in the life skills room I must step around a thin girl dressed in purple lying prone on the floor. She has bluish fingers. I see her dusky hands and mouth, the flickering of her eyes, and wonder if she’s having some sort of seizure. Another boy is at the sink cupping his hands under a tap of running water and crying. It breaks my heart—he can’t tell us why. They say it’s because he isn’t getting his way, but it breaks my heart nonetheless, and I feel the urge to rescue him. An older boy rests supine on a mat receiving physical therapy from his aide: a handsome young man who is patient, kind and strong. None of these children can speak. Then Calvin emerges from the bathroom, his aide holding his harness and hand. “Hi Calvin! It’s Mama,” I say, kneeling as I wrap my arms around his twiggy waist. He smiles and returns my embrace with fervor, gives me a slobbery, open-mouthed kiss on the nose. I think he knows it’s me.

I visit with Calvin’s aide for a spell, give her the supplements I’d forgotten to pack in his lunch. Then I head down the long corridor again, passing several kids reading books aloud as they go. Calvin can barely walk and can’t read, much less do them both at the same time. I feel a satisfying warmth wash over me as I swim amongst these most extraordinary, ordinary kids. Then I feel the aching pit again, sinking my soul. Later, at the pediatrician’s office, I feel it again as I listen to the whispers of three children and their mother. They're excitedly remarking on the colorful fish in the waiting room tank that I wonder if Calvin has ever noticed, even though I've shown him. I watch a bespectacled mother and son quietly reading books side by side. And I feel it again when I sit alone in the empty room waiting for Calvin’s doctor to come and discuss his weight loss, his seizure drugs, his paltry appetite, his urinalysis, his blood draw, his seizures, his behavior, his well-being, my sleep deprivation, my stress.

And I realize that wherever I go, I check into a heartbreak hotel, because no matter if it’s a school or a doctor’s office or the grocer or the sidewalk right outside my window, I see constant reminders of how wonderful children are and how, even with a boy as loving as Calvin, I’ll never be quite so lucky.

photo by Michael Kolster

friday faves - back and forth

In the span of a few seconds I can go back and forth between utter contempt for my child to the purity of bliss just beholding him.

For instance, even though it isn't his fault—it's the fault of the seizures and the drugs—sometimes I loathe Calvin's poor balance. The other morning, while he was playing with the shutters in the bathroom, as I was seated on the toilet lid holding his harness, he suddenly careened so quickly that he might have cracked his skull on the side of the porcelain sink if I hadn't caught him and—impatiently—redirected him.

Then he led me outside for a thirty-minute circus of righting him, supporting him and breaking his falls as he stumbled around the yard like some poor hack obliterated by a dozen shots of whiskey topped off with a couple of six packs of beer. I prevented him from breaking his teeth on the iron bench while trying to bite it, from poking his eye out on a few blunt, sharp branches and from whacking his noggin on a rock—exasperating to say the least.

Back inside I encouraged him to play with some toys on the floor. Kneeling, he discovered a shoebox and picked it up to bite it before setting it back down. Its hinged top popped opened revealing several of his favorite colorful toys inside, rattles and the like. Calvin seemed completely oblivious to their presence. After about five minutes he accidentally put his hand inside the box on top of one of the toys, picked it up and began chewing on it. I just rolled my eyes.

And his screeching and coughing, like some rabid hyena, sends me to a hellish place that I'm not sure I can even describe except to say I detest it, along with the matching diabolical expression he gets on his face. Again, I know it's not his fault but nonetheless at times it's like water torture.

But then, inevitably, whether in his high chair, his jumper or on our bed, Calvin recognizes my presence, perhaps looks me in the eyes for a second or two, reaches out and pulls me close. Sometimes I get a slobbery kiss on the cheek with his open mouth, teeth bared, and at others he affectionately yanks my head around by my hair, like some comic strip caveman, and—if I'm well rested—I laugh, though I'm in some pain.

My moods with Calvin go back and forth like some kid (other than Calvin) on a swing, the ebb and flow of the sea's tides or the heavy rocking pendulum of a clock. One minute I'm utterly joyous and the next I wonder how I'll manage getting through the rest of the day much less a lifetime of this, day in and day out, for as long as the kid survives.

And then I stop in my tracks, realize how lucky I am to have this little boy who shouldn't have survived, this boy who lives in the moment—not the past or the future or the material. So, tomorrow is a new day, and I think it's that back and forth—the ups and downs—that must be making this curious world I love so much go round and round and round.

Version originally published 10.15.2011

photo by Michael Kolster

completely retarded

We step up to the blue deli counter where Seth greets us with a pencil and small order pad in hand. “I’ll have an Ethanwich for here,” says Michael, as he grabs a Diet Coke from inside the refrigerated case.

We sit at a table against the wall watching customers come and go while waiting for our order. A familiar man reels through the door, his oversized winter coat draped lopsided on slouching shoulders so that one cuff hangs over his knuckles. Waving from across the room I say, “There’s Lloyd.” He sees us and awkwardly makes his way over, shuffling and wobbling in that unmistakable cerebral palsy way. Lloyd stands at the end of our table with a bewildered expression on his face, his eyes set between a pair of wrinkled parentheses like some Peanuts character. I smile up and say, “Hi Lloyd.” He tilts his head and with an open mouth makes a kind of happy growl. I give him a thumbs-up. After a slight pause he does the same with a warped hand that somehow mirrors his contorted body. We do a knuckle bump and he smiles.

I point to Lloyd and spell out his name using sign language. He smiles again and says, “Arrrrgh,” at which I gesture to Michael and spell out his name, too, with fist and fingers, though momentarily forgetting the sign for the “h”.

“You know sign language? When did you learn that?” Michael asks.
“I learned it as a kid, you know, because my uncle is deaf and retarded ... but just the alphabet and a handful of signs,” I explain.

Then I remember how my friend Monica and I used to sign to each other in church just to make it through the long, boring-ass services without slipping into a coma, how sometimes we'd practically pee in our pants trying not to giggle.

Lloyd ogles us as if we’re aliens from outer space, though I know we are familiar to him, then saunters over to another couple seated near the windows. The man greets him warmly though the woman seems less sure. After several minutes of Lloyd’s unrelenting stares they kindly say, “We’re going to eating our lunch now,” hoping he’ll get the hint and shove off. But he remains, fixed. They repeat themselves, perhaps unaware that Lloyd sometimes uses hearing aids and, even so, it’s unclear if he understands what is said to him. After a long awkward moment Lloyd releases his captives and moves on.

Seeing Lloyd reminded me of a scene in the matinee Michael and I had watched the previous day called The Descendants, starring George Clooney.

In the scene Matt King, played by Clooney, is driving while his teenage daughter Alex and her friend Sid sit in the backseat. Sid says something quite perturbing to Matt, who slams on the brakes and leans back to address the couple:
 
MATT (to Alex)
Your friend is completely retarded. You know that, right?
SID
Hey, my little brother’s retarded. Don’t use that word in a derogatory fashion.
MATT
Oh.
SID
Psych!  I don’t have a retarded brother!
ALEXANDRA
You suck, Sid.
SID
Speaking of retarded, I wish they would just hurry up. Sometimes I wait for them to cross the street, and I’m like, come on already! But then I feel bad.

I winced and laughed through the scene, found it amusing, pathetic and sad. I flinched at Clooney’s use of the word retarded. I chuckled when Sid lied about having a retarded brother. I winced again when Sid mentioned that he wished they’d hurry up, even though I understood his perspective, perhaps akin to those who watch and wait as Calvin and I slowly stumble hand-in-hand across streets and parking lots. And finally, I appreciated Sid’s regret at his own sorry feelings.

What a perfect scene, I thought, running the full gamut of emotions because of a single, seemingly innocuous word—retarded. Like Lloyd standing at the nice couple’s table as they first engaged and then waited—perhaps even miserably hoped—for him to hurry up, to disappear. I myself remember times in public, when struggling with my drugged-up manic, shrieking, drooling, hobbling Calvin, I wished that I could simply disappear, and then—like Sid—I feel deeply remorseful for having had those thoughts about my inexpressibly loving child.

I wonder if Ann Coulter ever self-reflects in such a way. I'm thinking maybe she's one of many out there with a true intellectual disability.

Version originally posted 03.05.12 

photo by Michael Kolster

a smooth process

Sometimes a smooth process heralds the approach of atrophy or death.

—Neil Young, Waging Heavy Peace

Neil Young

things i love and not so much

things i love ...

milk. rudy the dog. altruism. home. the right to vote. pumpkin bisque. fall colors. seizure free days. mom. inclusiveness. blog stats. homemade nachos. expletives. happy boy. rain. diversity. men who like quiche. farce. separation of church and state. travel. blue jeans. dragon moms. captain crunch. gray hair. this gorgeous expanding universe. snaggletooths. frosty’s donuts. equality. hubby. gun control. beaches in october. progress. crying and laughing at the same time. a good book. suzuki boulevard s40. movies. five o’clock shadow. wisdom. fried chicken. public broadcasting. writing. moon and stars. good humor. people that are different from me. honesty. shit kickin’ boots. leftover halloween candy. the pres.

not so much ...

celery and green peppers. deceit. snoring. socks that don’t stay up. suppression. drivers who don’t let others merge. jello salad. bigotry. epilepsy. blind ignorance. the skin on warm milk. bullies. radicalism. belly roll. vacuuming. chin hairs. homogeny. that gross brown scandinavian whey cheese. police brutality. raking leaves. idle hands. television. convention. loud noises. hoarding. sick boy. antiepileptic drugs and their side effects. hate. US incarceration rates and demographics. tripe. tax evaders. sleepless nights. supreme court citizen’s united decision. no more ice cream. lilee’s public house gone. forgetting history. ugly americans. people i can’t trust.

photo by Michael Kolster

speck of dust

It’s good to get outside of myself, out from under the piles of insurance notices, dietary protocol, doctor’s notes, lab requisitions, irrelevant school notices. Away from the drawer stuffed with drug-filled childproof bottles, pill cutters, syringes, bibs, rags and sterile gloves. Distance myself from diapers and wipes and rectal thermometers, pain killers, suppositories and salves. And sometimes I get that chance, even in the comfort of my own home.

I watched Felix Baumgartner drop out of the sky from 128,000 feet. A strangely unsettling vertigo washed over me as I eyeballed the rotating curvature of our blue planet which appeared more brown than anything. Viscera twisted as he spun like a top, first in one direction, then slowing before circling in the other, the sun at times glinting off his helmet. I felt as if I were doing loop de loops on a roller coaster—exciting, unnerving, exhilarating. At the edge of my seat, I squinted at the little white speck on the screen: a man tumbling over himself in a sickly Time Tunnel spiral. I knew the outcome—it had been all over the news the day before—but still, the scene was gut-wrenchingly tense. Even so, I wished I had been able to watch it live, to feel the depth of angst, fear and white-knuckle suspense, to feel something so completely foreign in its origin. In a way I wished I were him.

The video cut to Eva, Felix’s mother, tears streaming down her face as she sat at the edge of her own seat, watching, waiting. What must this mother be thinking as she witnessed her son rip through the sky like a rocket—for a period, turning grisly cartwheels—punching a hole through the sound barrier with a mortal fist sheathed in Stormtrooper white? What were the chances he might perish, dissolve into thin air or be ground into the turf like sand? I found myself paralyzed, delirious, euphoric.

After seeing—feeling—such a fantastical feat, its images gravitated to my mind like a magnet. I later sat near the bedroom window, Calvin happily mouthing his toys on the floor near my feet, his colored plastic orchestra cube blinking and playing the same music I’ve hear a million times. Up there in space ... won’t it be nice when that’s me? I mused. Oh, how I sometimes long to be a speck of dust floating in the cosmos, oblivious, infinitely small, yet simultaneously expansive. Invisible. Trivial. Perfect. I’ll be ready to go there when my time comes, I thought, lured to that edge of peacefulness—the waters of Lethe and Mnemosyne—like tides drawn to the moon.

But then, I step back inside myself where there’s laundry to be folded, Calvin’s dinner to be made, a floor to be swept, dishes to unload, diapers to change, and an eight-year-old mouth to spoon feed. Then I delve even deeper within, thinking of my aging mom, writing my blog in my head, supporting dear friends, loving my husband, adoring my child, embracing my family. Within is where I find a self that—every day—can soar twenty-five miles high and spin, sometimes uncontrollably, at 800 miles an hour even with two feet planted firmly on the ground of this planet which is truly, mostly, azure blue.

originally published in 2012.

Felix Baumgartner, Red Bull Stratos

sleepless nights too

I was up nine times the other night laying Calvin back down in his bed, each time unlooping one side of the safety net secured to four bedposts and two casters. I feel like a new parent, peering into what amounts to a gigantic crib, to ensure that Calvin is still breathing. Sometimes, in the dark, my eyes play tricks on me and I have to grab the mini flashlight to see if his lids are closed, not locked glass-dead-open in the wake of an unstoppable seizure.

I offer him water, which at times he takes in copious amounts, but usually he’s simply uncovered. At eight years old he has yet to master the skill of covering himself up again. Sometimes I doubt if he will ever figure it out.

He’s growing fast, becoming the beanpole reminiscent of the men on both sides of his family, so that now when kneeling in his bed his head pokes into the webbed canopy. Soon, we’ll have to figure out some other solution to keep him from falling out of his bed. It’s unclear if we can teach him the danger and consequence of standing up in there.

Until we do we’re tethered to nights with a restless child, a grumpy-as-hell, sleep-deprived mama and a daddy who saves us all by crawling into bed with Calvin who, as a result, sleeps like a baby should.

epilepsy in art

Ambulatory EEG, by Rachna Pettygrove

David B. from his graphic novel, Epileptic

Opisthotonus by Sir Charles Bell

The Stonecutter, by Jan Sanders van Hemessen

Hysterical Epilepsy, by Paul Regnard

Seizure, by Graham Bates

friday faves - dog days

I like to think of myself as a kind, benevolent human being, but sometimes I can come off quite the opposite, particularly on weary, frustrated, angry or sorrowful days. Saturday was a good example.

Friday night Calvin got his first dose of what would have been considered his ninth antiepileptic drug except that he’s tried this one before, when he was just two. And as sick as the idea makes me, since there doesn’t seem to be any other choice, he’s now on three powerful anticonvulsant drugs since his seizures keep inching their way back up.

Saturday, gorgeous warm weather invited the two of us outside, Calvin in denim shorts and a striped polo, me in a pair of clam-diggers—my holey jeans rolled up mid-calf—scuffing around in orange flip-flops and a sleeveless white cotton blouse. It must have been eighty. Much to my chagrin, Calvin stumbled around the yard as if the world was spinning (no doubt for him it was.) As he toppled and tripped, tumbled and tipped, I caught him with a bent knee, an outstretched arm or a yank on his harness. He looked like a boy who’d just jumped off of one of those kid-powered merry-go-rounds with the elbow-shaped handles you spin around on until you get dizzy—or sick. Except his dizziness was because of the drugs. So, rather than torturing both of us any further I loaded Calvin into the stroller, clipped Rudy on the leash and headed for campus.

Folks were out in droves—students, teachers, a bride and groom, their guests, families, dogs and squirrels—enjoying the balmy weather. Calvin sat calmly sucking his thumb and poking the bejeezus out of his eyes. We happened upon a familiar dog named Bella with her kind elderly owner. The college allows dogs to roam freely so the two old dogs played like a couple of puppies while her owner and I chatted.

Rudy spotted another dog nearby. This one, a stout, unfixed male yellow lab, was restrained on a taught harness. As Rudy happily—harmlessly—approached, the owner tugged on the harness raising his dog’s front paws just off the ground. After initial sniffs, the dog attacked. Rudy barked back before retreating. “Go away!” the wife of the owner scolded Rudy in an annoying tone while pointing a witchy finger, as if he were the trouble maker. I called for Rudy and he came.

“He needs to be on a leash,” she barked.
“I saw your dog initiate,” I replied confidently, “Rudy is friendly, just wanted to say hi.”
“Then he’s gonna get attacked sometimes,” the man added crossly, keeping the choke hold on his stupid, jerky macho dog.

All I could do was roll my head in an exaggeratedly apathetic manner. As the three of us sauntered away the couple kept yakking at my back. I punctuated my disgust of their sour spirit with an implied fart in their general direction, figured it'd have more of an effect than flipping them the bird. My outward composure remained calm but inside my heart was pounding with ire at these wretchedly abrasive people.

As we walked home I thought of things I wished I’d said. You should think about cutting off some balls, I imagined saying or, grow some neuticles, or you’re just jealous of my well-behaved dog. Perhaps I should have stamped my forehead—using my thumb and index finger—with the shape of a capital “L”: LOSERS! I was in the mood to pick a fight, perhaps get into a brawl with the wife—pull some hair, scratch some eyeballs out—wanted to insult their stupid-ass kid who just stood there gawking. I nearly looped back around to intercept them and give them a piece of my mind.

But in my seething fury I remembered something my mother-in-law wisely says, don’t get into a pissing contest with a skunk. I laughed to myself, my petty anger dissolving away, bent down and kissed Calvin, pet Rudy on the head and kept on strolling. And when we got to the corner a half block from home, Calvin adorably squealed with delight knowing we were almost there. I smiled.

Version originally published 10.10.11.

photo by Michael Kolster

treading water

Teaching someone how to tread water often feels futile, and sometimes it is. It’s hard to explain to a non-swimmer how to paddle their arms and legs hard against the liquid, as if pushing off, rather than slicing through it like a hot knife in butter. If you do that you’ll just sink to the bottom and remain there forever unless there is someone to fish you out.

Every so often I paddle back through a sea of emails, a few composed from just before Calvin’s birth and continuing on from there. Some are candid notes between my family and me, others dry correspondence with neurologists, neuro-ophthalmologists, physical and occupational therapists, vision specialists, insurance personnel and still others emotional messages to and from mothers of disabled children.

I came across one I sent to my brother Scott, when Calvin was a bit over two years old and had just been diagnosed with epilepsy, in which I wrote:

calvin started drinking from his bottle by himself yesterday and today he is much improved! it is so good to see. i may have told you we have been working on that one for over a year, maybe as long as 18 months. i hope other skills will not take as long. maybe his development can snowball. i am wishful. he is also starting to catch himself from falling backwards by sitting, rather than arching into a back dive. much safer!

so much is unknown about calvin's future and potential. that is very hard for me. at this point speech looks like a long-shot, but you never know. i will try my hardest to help him achieve his very best. i learned that from you and dad.

As I perched on the toilet lid spotting Calvin while he batted the bathroom shutters—something he’s been doing since before he was two—I stared out at the crimson and gold leaves littering the lawn and thought about that email. Calvin still hasn’t learned how to fall back by sitting. The protective skill was emerging just as he changed antiepileptic drugs. On the replacement drug he lost the skill—completely. His speech seems less likely to materialize as the years tick by. He utters few consonants save some “ms” and the occasional “n.” His vocalization is no more than a stream of looping, repetitive hums, round arching “ahs,” clear “oohs” and howling screeches.

I feel like Calvin and I are both treading water in some gigantic fishbowl, with our heads tipped back just barely above the surface, pumping our legs hard against water that just keeps getting away from us—slips through our fingers. We are trying in vain to keep from going under but, like in a miserable dream of quicksand, never making any progress. And though we may be able to tread water forever, it seems we never reach a state of buoyancy where we can gain enough clearance to churn our limbs and propel ourselves away from the mire. We’re caught in an eddy, an endless, swirling, dizzying vortex of missed opportunities, lost skills, stupefying drugs, vicious seizures, dim futures, and constant drudgery. Where every spin of the hour hand is the same as the one before, only that the hand gets bigger, ticking apathetically second by second, nothing changing but the dismal light on its beautiful face.

At the same time, however, Calvin is my little buoy, my life preserver, the one who teaches me to tread water with great proficiency instead of sinking like a stone.

Originally published 11.04.11

photo by Michael Kolster

risk

Only those who will risk going too far can possibly find out how far one can go.

— T.S. Eliot

photo by Michael Kolster

little ball and chain

Calvin's being sick is a strange mix of emotions—fear, dread, sorrow, frustration—and it pulls me back from the feelings I have when he is manic and nearly impossible to deal with. Those are the times when I selfishly wonder what it would be like if my little ball and chain wasn’t around anymore.

When he’s this sick and crying, coughing, vomiting, not eating, not drinking and feverish, he has a hard time falling asleep unless he wraps his arms around my neck. So, when he was in his bed, I leaned over to let him hug me. His whimpers trailed off and he fell asleep with my head in his grasp, my knees dug into the side of his bed helping to support my own weight over his body. I remained that way until my hand and leg started falling asleep.

Calvin can’t tell us what is wrong, so when he is ill we make a habit of taking him to the doctor to get him checked out. After an hour of waiting we finally saw the doc. She inspected his ears and throat, which looked fine, then informed us that croup is going around. When we got home I looked it up:

Croup: inflammation of the larynx and trachea in children, associated with infection and causing breathing difficulties.

This is how kids like Calvin die. F*ck. What would I do without him?

With my head resting on his hot forehead as he sleeps I peer over his little bird wing to his exposed ribs and his thin, knobby-kneed legs folded up to his chest like a newborn colt. He wears only a t-shirt and diaper to help cool his fever. He appears much smaller than he is, even though at eight-and-a-half he still wears clothing meant for a six-year-old.

Calvin has never really been a healthy child, since even before he was born, lacking a significant amount of his brain’s white matter for no apparent reason save a possible developmental blip. He’s had digestive trouble since he entered this world, has suffered more than his fair share of ear infections and pneumonia, and has endured seizures since he was eighteen months old. Even in the absence of illness he still takes a mind-boggling amount of anticonvulsant medication that would hurl any adult into a brick wall rendering them senseless. The drugs meant to stop his seizures cause him heinous side effects—nausea, drooling, visual disturbances, ataxia, lack of appetite, brain fog. Poor little kid just can’t catch a break.

All day I feared having to take Calvin to the hospital to treat dehydration, respiratory distress or—worse case scenario—a seizure that won’t stop. But he made it through like the champ that he is, took his nine evening antiepileptic pills in one fell swoop and kept them down, then eventually stopped crying and started to drink again.

Today Calvin is on the mend and it appears he’ll be gracing me—and vexing me—for the foreseeable future, which is barely past the end of my own nose, if that. So I'll just try to live in the moment while loving and coping and struggling with my one and only, irreplaceable, sweet little ball and chain.

photo by Michael Kolster

breakthrough: not what you think

I trailed savory ribbons down the stairs to where Michael leaned over the stove stirring homemade pumpkin bisque. The kitchen was filled with the delicious scent of lamb shoulder baking in a pool of onions, black olives and red wine. Calvin’s nurse, Beth, sat upstairs giving him a bath. He was wound tight as a drum, squealing and laughing and shrieking and flailing. In a manic spin he’d caught his shoulder on the faucet. An abraded welt formed, stippled with red pinpricks, but he didn’t cry.

“I hope Calvin doesn’t have a seizure,” I said to Michael as I grabbed Rudy’s leash and stepped out the door into near twilight, the ominous hunch stabbing my gut.

The two of us strolled slowly, Rudy’s grizzled jowls drooping down to sniff wet grass while I stepped like a schoolgirl onto fallen acorns, smashing them one by one. We walked past our two-beagle neighbor’s house, past the vacant one next door, past Woody’s place then crossed the street toward the fields. Rudy’s gimpy leg was giving him a little trouble so we lingered a moment on a wedge of lawn near tufts of downy milkweed sprouting like some bearded aliens from beak-shaped pods. Across the fields an orange sun hung low and peaceful through a stand of trees.

On the way back we stopped to visit with Mike, Woody’s neighbor who’s in his late eighties, if not ninety, as he raked leaves into a ready pile before dumping them into his pickup. Mike propped one hand on his truck, the other loosely grasping a rake. We chatted a while about Rudy and Calvin and, being dinnertime, we gravitated to the topic of food. I enjoyed shooting the shit with this tall, thin man who, in some ways, reminds me of my father, but I felt a gnawing urgency to get home. Finally, our conversation trailed off and we headed back in fading light.

Crossing the threshold I sensed something wrong. Dead quiet. Empty. Too early to be putting Calvin to bed. His pillbox was on the coffee table, his food put away. I ran upstairs where Michael and Beth were tucking Calvin into bed. “He had a seizure during dinner,” Beth said, “about three minutes.” She described it just like all the others of recent past: no breathing during the first half, slightly convulsive, very cyanotic. Beth hugged me. Then we pulled the safety netting tightly across his bedposts, looped the ropes around the caster locks and closed his door behind us.

It had only been eighteen days since Calvin’s last seizure, nine prior to that one which came on the heels of seventy-eight magical seizure-free days. The one on day seventy-eight was what’s known as a breakthrough seizure: a seizure that pops through a long period of seizure freedom. I’d heard countless stories of relative seizure freedom completely lost in the wake of a breakthrough seizure. In my mind I thought, they’re ALL breakthrough seizures, aren’t they? Ironic how, in the world of epilepsy, a word that usually carries a positive connotation is turned right onto it’s head. I wonder if Calvin will ever go seventy-eight—or more—days again, or will he ramp back up to having seizures every week ... or worse? The saddest thing of all is that now he is ingesting six times the amount of his newest medication while going fewer days between seizures compared to last October.

Wanted: breakthrough cure for epilepsy. Reward: millions.

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

politics aside

Recently, a friend, one of my readers, commented on a political photo and message I’d shared on Facebook. He said, “Christy, stick to your blog where you don't piss off 50% of your friends ... Ha ha.”  I “liked” his comment for its candor and lightheartedness. Soon after another reader commented:

“I have stopped reading Christy's blog lately. I'm not "pissed off," just not interested in political rant of any kind, from any medium.”

Then I put down my own thoughts, saying that my blog and any political posts I share are not mutually exclusive and then added that I was bummed.

But I’ve been rolling their words around in my mind the past day or so and have come to realize that, while it’s true that my blog and any political “rants” I make are separate, indeed life with Calvin has informed—impassioned—my political outlook. And the feeling leaves me with a hankering, not to rant, but to simply share my thoughts.

At this point in life I consider myself pro-choice. Though to be honest, when I was pregnant and awaiting the results of my eighteen-week amniocentesis—first feeling the hard mound in my belly that was Calvin—I knew I couldn’t abort him even if, say, he had some serious defect. It was a moment of understanding that there are probably as many different circumstances for why a woman—a couple—might consider abortion as there are stars in the sky.

Earlier today, while mulling the subject over, I recalled the stories of two authors whose books I’ve recently read. Both are parents of children born with tragic genetic conditions: one whose son will die soon, within the first few years of his life, the other whose son is terribly disfigured and disabled and whose prognosis is unknown at best. Both boys face vicious seizures, mental and physical hardship and suffering. These parent authors have each written that, had they known about their children’s plight, they might have chosen abortion. Their painful stories inform my opinion on the subject, which, for me, is not a black-and-white issue and not one to be judged, by some, appropriate only in the case of rape, incest and the health of the mother. And though I’m not sure I could ever choose to have an abortion, I still believe that the decision is as multifaceted as a snowflake under a microscope, as unique and nuanced as the nose on my face.

Our circumstance with Calvin also informs my opinion on health care. I grew up in a conservative republican household where my father believed in the slogan, “every man for himself.” And although I broke from that dogma in college, I have drifted further and further away over the years. Raising a severely disabled child whose future is uncertain and whose medical and pharmaceutical bills would likely shock anyone into a state of catatonia and—even with private insurance—could bankrupt most, I understand the importance—the right—for everyone to have health care. I don’t believe any of us should have to live in fear of losing it, live in fear of being denied it, live in fear of reaching an imposed cap. Are there really parents who believe that their child’s health and well being is a privilege that can so easily be whisked away? I must assume that there are.

And, being the mother of a disabled child I know what it is to feel marginalized, to feel misunderstood, to be gawked at, perhaps even judged, for having a retarded child. So I align myself with people who promote inclusiveness—not exclusivity—and offer fairness to everyone—women, the disabled, our immigrants, our gay and lesbian community, people of different races, ethnicities, religions, economic status—not only for select few. Because those who wish to deny others the same freedoms that they themselves enjoy have likely never walked even a few steps in my shoes, nor the shoes of countless others less fortunate than themselves.

And so, readers, at the risk of “pissing off” some of you, I write raw and, like Ernest Hemingway said, I “write hard and clear about what hurts.” My hope is that you will keep reading, have an open mind, and perhaps learn something new about a situation different from your own. Though, like my impassioned political canvassing on Facebook, I can’t apologize.

photo by Michael Kolster

mackerel sky

They say it’s not black and white, but grey.

I want that grey instead of white-hot, instead of black as dead earth: my boy's seizures colored both.

And I have been looking for a long time.

I am searching for grey that is smooth river stone, mackerel sky. Even the pure white of soft wind would do.

I hide the black—inside—that sometimes spews out swift red swathes.

I want the white of ocean foam, sand dollar, my boy’s smile, not the blinding white scorch of relentless electric screams.

I am looking for the grey that lingers, soft like a ribbon ... 

a dream ... smoke.

My white is thin and brittle, chipped, the black rottenness glistening beneath—stinking, putrid.

Give me simple grey—easy on my mind’s eye—give me mackerel sky.

photo by Michael Kolster

friday faves - the things people say

I was pregnant once before Calvin. Michael and I were so excited, after all, we had both just turned thirty-nine and were beginning to sport some gray hairs.

About eight weeks into it I remember telling Michael, “I don’t really feel pregnant anymore.” A few days later a sonogram confirmed it—the technician searching in vain to find a non-existent fetal heartbeat where it once existed. “Are you sure? Are you sure?” I pleaded.

I knew miscarriages were common, but when it happens to you it feels bad, really bad. The first time I knew someone who had one she and her husband named and buried the fetus. My boyfriend at the time thought it odd, exaggerated. I didn't. All I knew was that I couldn't have a clue as to what it would feel like if it were mine and perhaps their ceremony was completely appropriate, necessary.

The doc—who I'd never met before—told me it might take a few days, perhaps as long as a week or more, for the “tissue” to evacuate my body naturally. He said it could happen at any time, even at work, and that it’d be messy, perhaps painful. My other option, he added, was to immediately get a D and C—dilation and curettage—like they do in abortions. Right there in his cold, square office, sitting on the other side of his imposing desk, I imagined trudging around like some sort of walking tomb, knowing that the little hardened grain of rice inside me—the one that was supposed to ripen into my precious baby—was dead. I couldn't do it, couldn't wait it out. So, against my usual preference for noninvasive medicine, I opted for the “procedure.”

It was harder than I thought; sadder, darker, utterly empty while at the same time all-encompassing. In a moment of weakness I called my brother—who didn’t know I was pregnant in the first place—and told him everything that had happened. With little to no pause he said, “so now what do you think about abortion?” My body choked in silence. I was stunned. “Um, it’s not really the same thing,” I said quivering as I hurried the conversation along and hung up before he could perceive my grief, shock and regret for having told him.

Amazing, the things people say.

When Calvin first got glasses he was eleven months old though he looked more like a six-month old. Strangers in the grocery store asked me, “how did they (who they?) know he needed glasses?” Nearing the depths of despair over my son who was missing part of his brain, I found it hard to see that it was any of their business. If I stomached a reply beyond, "because he can't see shit," it was never any good. Perhaps I should've responded using my dad’s favorite comeback, “what’s it to ya, cabbage head?”

At times like these I think of my dear friend Lidia, my sister mermaid. She had a beautiful daughter when she was twenty-three. The baby was stillborn. In her memoir The Chronology of Water she writes:

I was listing all the horrible things people had said to me since my baby girl died in me the day she was born.

Things like: “You know, it’s probably better that she died before you got to know her.” Or: “Well what you really want in your 20’s is the freedom to party.” Or my personal favorite, from my father’s sister, fascist catholic: “The saddest part is that she’ll go to hell, isn’t it, since she wasn’t baptized.”

I cannot imagine the hole these statements bore into her already hollow shell. Indescribable, torturous, I’m sure.

While catching up recently on Facebook I read a snippet from a new friend whose toddler has Tay-Sachs disease, a terminal metabolic disorder. She wrote:

Man at coffee shop: “What's wrong with your baby? Why won't he smile at me?”

Me: “Maybe he doesn't like you.”

= )

A loved one once told me, in a moment of deep frustration and anger at someone's well-meant, though painfully ignorant, comments and advice, “you need to step back from your anger,” and then, “they're just trying to help, their intentions are good.” Later, at hearing this, Michael reminded me, “Christy, you know what the road to hell is paved with.” And though I don't believe in hell I say, “I sure do.”

Originally published 10.03.11.

more than you can handle

“You’ll laugh about it later,” the teens said, as I cried in pain while they replayed my howling over and over on the tape recorder my sister’s friend had gotten for her birthday. I’d stubbed my eight-year-old toe on the foot board of the girl’s bed trying to jump to it from a nearby beanbag chair. Through my tears I didn’t believe their words. But they were right.

Since then I’ve laughed about many of the unfortunate circumstances in my life, some of them pretty heinous. So it made sense that a recent episode of This American Life struck me as both hilarious and poignant. In the first act, comedian Tig Notaro gets up on stage at Los Angeles’ Largo club and the first thing out of her mouth is a wry greeting, “Good evening, hello ... I have cancer, how are you? I have cancer.”

In the subsequent minutes we learn that days earlier she’d been diagnosed with stage-three breast cancer. She goes on to say, in a painfully funny way, that in the span of a few months she’d survived pneumonia, then a dangerous, intestinal bacteria, followed by the tragic and sudden death of her mother before being diagnosed with the cancer. Then she suffered a breakup.

Next she plays with irony on a subject that I return to often in my own writing. She starts by saying:

“But you know what’s nice about all of this is that God never gives you more than you can handle ... never ... never ... when you’ve had it, God goes, ‘alright, that’s it.’”

She continues, as contagious laughter spills onto the stage, to describe a conversation between God and his angels:

“I just keep picturing God going, ‘You know what ... I think she can take a little more,’ and then the angels are standing back going, ‘God, what are you doing? You’re out of your mind!’ and God was like, ‘No, no ... I really think she can handle this’ ... ‘But why ... why?’ ...’I don’t know, I just—you know—just trust me on this.’”

The image she conjured was totally absurd: God up there in heaven, his fists dialing up the knob on our pain, suffering and tragedy because he thinks we’re able to take a bit more. Ludicrous, and yet for many it is embraced as a mantra, perhaps some sort of coping mechanism—explanation—of why shitty things happen, a source of sustenance.

We've all gone through trials and tribulations, and sometimes it's nice to cut the tension. So if you’ve ever had it hard, or are going through a rough spot right now, I highly recommend listening to Tig for some perspective and a good healthy laugh:

This American Life, What Doesn't Kill You, Act One, Too Soon.

days in the life

September 5, 2011

* good balance * suspicious. too good to be true?

* shit in bath AGAIN

becoming pattern

September 6th, 2011

* 2+ minute tonic-clonic seizure, slept 1 hour. later, slept another hour

did not want dinner but took pill’s like always

September 7, 2011

* BEST WALKING OF LIFE?!

September 20, 2011

day 6

* TONS OF HYSTERICAL LAUGHTER @ NOTHING

lots of head rubbing at school

lots of humming and fingering

* SEIZURE BREATH

* SUSPECT SEIZURE TONIGHT

September 21, 2011

* 11:30 am 2+ minute tonic-clonic seizure in jumper

SUPER LOOPY P.M. HYPER

September 5, 2011

* tight face in jumper. odd looking. irritable.

* 12:15 2+ minute tonic-clonic seizure @ school while eating lunch :(

slept 1  1/2 HOUR

not wanting to walk

crazy in bath screaming manic

October 19, 2011

* crying @ school took to doc

no ear infection 41 lbs.

increased am keppra 125 mg to 250 = 250 mg bid

October 23, 2011

day 18 — longest in 2 years

poor appetite persisting for several days

ate practically nothing

October 26, 2011

fell and hit head lightly on rock. cried some.

October 28, 2011

day 23

weird behavior @ breakfast. ODD VOCALIZATIONS NOT HUNGRY

* grinding teeth. head spinning. zombie eyes. head rubbing. slight seizure breath. happy. walking good. runny nose. looks tired

* 5:15 pm 3+ minute tonic-clonic seizure started in tub very cyanotic

November 6, 2011

walked GREAT @ BEACH probably 1/4 mile holding our hands

SUPER HAPPY DAY

November 18, 2011

not too interested in food

EAR INFECTION 40 lbs.

ate practically zero dinner

lost 1 pound in month

* started amoxicillin

November 30, 2011

HYPER YIKES!

but eating :)

fell asleep @ kidney sonogram

ate almost no dinner but liked hot dog and broccoli for few bites

photo by Michael Kolster

write hard

Write hard and clear about what hurts.

— Ernest Hemingway

Ernest Hemingway, (July 21, 1899 – July 2, 1961)

plain sick

I got punched in the eye, bit on the cheek, scratched on the neck and screamed white-hot in the ear, head butted on the nose and lip and kicked in the ovaries ... all by my eight-year-old boy—mostly not on purpose—over the course of a weekend.

He’s back to being the maniac that he was last spring, likely due to the antiepileptic drugs hitting him harder after a recent and unfortunate weight loss. His teeth-grinding is more fervent than ever and he flails like a lunatic in a padded cell, but without the straight jacket that oft times I feel we need.

I’m sick. Plain sick. Our situation makes me sick. Sometimes little Calvin makes me sick. I’m sick of his screaming, of his poor coordination, his inability to do anything by himself. I’m sick of him nearly choking on food, coughing his lungs out in what seems like an act, though I can never be sure. I’m sick of him stuffing his hand down his diaper then not using that hand to protect himself from nearly running into a wall, or spreading a handful of feces all over like he did last night after dinner. I’m sick of his feverish writhing and uncontrollable floundering, sick of constantly having to keep one hand and both eyes on him at all times. I’m sick of the trips to Boston, the blood draws, the failed urine collections, the doctors’ appointments, the lines at the pharmacy, the mistakes with his seizure drugs, the loss of skills it took months, if not years, to learn. I’m sick of him biting every wooden surface in the house. I’m sick of feeding him, of changing his diapers, sick of having to monitor his bowel movements and of having to give him suppositories every other day. I’m sick of his stubborn behavior, his head-banging on the padded bed boards so hard that I wonder if he'll give himself a concussion. I’m sick of having to listen to a baby monitor all night long, sick of the sleep deprived nights, sick of the gnawing worry, sick of the dread, sick of the fear, sick of the monotony. I’m sick of jumping out of my skin at loud noises, sick of resenting him, resenting my husband, resenting my friends, resenting what my life has become. I’m sick of the drugs and I’m sick of the seizures that never seem to end.

I'm sick of not feeling quite like myself.

And then the phone rings and I think I'd like to bite the head off of whoever is on the other end, and it's my mother and my sister. They can tell something is wrong. I can hear the regret in their voices, their helplessness in being three thousand miles away. In a rare show of memory my mother is able to tell my sister, who is sitting next to her in the car, that I'm far away and feeling very sad. Mom asks what she can do to make me feel better. “Just listen,” I say, and at hearing her kind, soft voice I feel the slightest bit of sick tension melt off of my shoulders like icing from a hot cake.

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

photo by Michael Kolster