a more perfect union

This is America. The land of the free and the home of the brave, a nation in which we are all created equal.

And yet, not everyone (I think of my son Calvin) is born healthy. Not everyone is born into a hopeful situation. Not everyone is born affording protections for their health and well-being. Not everyone is born into a community with good schools. Not everyone is born into wealth. Not everyone is born in a city with safe drinking water. Not everyone is born above the floodplain.

This is America. A nation of immigrants. A land having been taken from its natives. A nation, in large part, built on the backs of slaves. And yet, apparent to its founders America, this grand design of liberty and justice for all, would continue to be a work in progress, an ongoing effort to form a more perfect union than it was when they penned the Constitution.

This past week I've been watching the Ken Burns and Lynn Novick documentary about the Vietnam War. It is brutal in its revelations. Some of the images have caused me to cover my eyes. Others, like when our troops advised the waterboarding of an elderly rice farmer, made my skin hot and prickly, seeing the man's elbows cinched tightly with twine, his bare feet kicking to break free from his oppressor's restraint while another slopped water across the gauze covering his face and mouth. I winced watching a throng of police with batons beating antiwar demonstrators, and a mob of National Guardsmen shooting into a crowd of students protesting the long and senseless war, killing four. In all, nearly sixty-thousand American men, mostly working-class Whites and minorities, many of them teenagers, were killed during the war along with two-million Vietnamese troops and innocent civilians.

I consider those valiant young protesters taking to the streets when, at the time in the late sixties, most of the nation still supported the war. Those pro-war Americans, who embraced the flabby platitude, "love it or leave it," didn't know Nixon was lying about the war's progress. Even congress was unaware he had attacked a site in Cambodia, hadn't known the treasonous lengths Nixon had taken by colluding with the South Vietnamese government to get elected.

The protesters were on the right side of history, attempting to right the grievous wrongs with the hope of making our nation better for everyone.

So, too, were the Suffragettes, the Labor Movement protesters, Muhammad Ali, Rosa Parks, Martin Luther King, Jr., the Freedom Riders, the Greensboro lunch-counter protesters, the Selma to Montgomery marchers, the Women's Liberation activists, Colin Kaepernick—and the disabled people in wheelchairs protesting the congressional GOP's most recent attempt at dismantling the ACA which would have endangered people like my son Calvin who suffer preexisting conditions.

Just after last year's presidential election, I had a dispute with someone over the Trump protesters. He had condemned the masses denouncing the shameful president-elect who had campaigned against Muslims, Mexicans and immigrants, who had maligned Blacks, disparaged and insulted women, and mocked the disabled. This person showed little interest in understanding the protesters' perspective. Instead, he spoke over me. Refusing to be intimidated into silence, I met his escalation until we were shouting over each other.

Months passed until we spoke again when I offered him an olive branch. Recently, he told me he had stopped watching football because of the "whiny athletes," who I assumed to be the players protesting racial injustices. I chose not to engage having previously witnessed on several occasions his limited capacity to listen, to be open to different perspectives, his feet cemented.

Then it occurred to me that maybe my opinions are cemented too. So I probed further, questioning my understanding of justice—the lack of which appears to spawn most protests—remembering a friend who had insisted that justice is a matter of opinion. But is it?

Last week, a friend on Facebook expressed her disdain for the Kaepernick effect, and what she saw as a disproportionate amount of media attention spent on the athletes' "disrespectful" protests rather than to the tragedy in Puerto Rico or the nuclear crisis with North Korea. My initial reaction was to concede that there might indeed be an imbalance.

But then I got to thinking about protest, remembering what I'd learned about the ones mounted against the Vietnam War. Nixon and his cronies, champions of the racist war on drugs, to gain political leverage, had been masterful at pitting mainstream Americans against righteous antiwar protesters. He and his veep had characterized the demonstrators—so many of them young and Black and Brown and poor, including dissenting veterans who had fought and returned home—as somehow unpatriotic. I'd seen similarities between Nixon and Trump. But in that moment, I also saw clear parallels between Trump's lax and meager response to the post-hurricane suffering in Puerto Rico and his contemptuous tweet storm chastising athletes who are exercising the very freedom our troops ostensibly fight for. Each of these responses reveals an apathy and contempt for Black and Brown lives, which is exactly what Colin Kaepernick and others who have joined him are protesting, not the flag or Anthem. They are seeking the same protections any of us would fight for; they are protesting the miserable treatment, abuse and killing of Black people in this nation. Their—our—protest is virtuous, meant to better this place we call home.

And, as I'm wont to do, my thoughts circle back to Calvin who, despite the fact that he was born with legions of disadvantages, soldiers on even in the face of continuing hardship and adversity. I sometimes think that his very public presence in a sometimes insular world, one which greatly misunderstands and often neglects people like him, is a march against the exclusion and abuse of other marginalized populations. A true American, my son, through and through. The best in every sense of the word, helping to make this place, this mixed-up nation, a more perfect union for every one of us to behold.

Photo by Mary Scarpone

crystal equinox

Our first day of autumn began with grey skies, nursing a sick child, and the remnants of a rare spat we'd had the night before. It was another long day, Michael tied up with commitments yet still having to grocery shop for the special dinner he planned on making us that night. We were celebrating our crystal anniversary (we chose the equinox for our love of parity) having exchanged rings and recited our vows on a pebble beach skirting Maine's Little Cranberry Island fifteen years ago.

At day's end, the minute we put our snotty, feverish boy to bed, Michael cracked open a bottle of Californian sparkling wine and we toasted to our accomplishment. He gave me a hug and kiss, a huge bottle of Maker's Mark and an exquisite bouquet of white, ivory and yellow red-speckeled zinnias with miniature sunflowers he'd bought from a roadside Mennonite stand. I gifted him a bottle of ten-year-old bourbon proving that great minds do think alike.

As we sipped our bubbly, Michael put his Swiss chard and corn gratin in the oven and I chopped tomatoes, avocados, feta and red onion for a makeshift variation on a Greek salad. When the lamb chops came off of the grill, pink and weeping, we saddled up to our butcher block bar while I read the wedding vows we'd written together so many years ago. We vowed honesty, respect, encouragement, tenderness and, most of all, forgiveness.

After dinner, we perused an album I'd put together back when I had the time to do that sort of thing. We marveled at how young we looked when we were nearly thirty-nine. Pasted onto thick black pages were selfies of our intimate elopement, of me in a flowery vintage prom dress I'd gotten for twenty-seven bucks, he in dark Levi's cords and a vintage pinpoint-polkadot shirt. There were photos of our lobster dinner, and of us drinking champagne while perched on the rocks at sunset looking out to sea.

The following pages included photos from a barbecue reception we'd given three weeks later in the hills across the bay from our beloved San Francisco. Forty of our dearest friends joined us, including a few family members from both sides. The celebration was hosted by our friend Gordon who, just over one year ago, left the world far too early. We miss him, along with so many of our other west coast friends. Guests brought salads and yummies for grilling. My friend Gwen, who couldn't attend, made a lovely cake. Gordon poured some of his handcrafted beer.

At the back of our wedding album is an envelop with keepsakes: a menu from a family dinner at Alice Waters' Chez Panisse, an Apache blessing from my friends Doniece and Sadik, a map of the Cranberry Isles, a letter from my friend Aya in Japan who I met just once when I was traveling in Europe at twenty-four, a Chinese fortune, the key to our room at San Francisco's King George Hotel where Calvin was conceived during a return visit a year later, cards from loved ones including my mother and a funny one from my sister that remarked on the resemblance between me and Michael in the photo on our invitation, and how some FBI guy from her office saw it and joked he was going to turn us in for "lewd family behavior."

By nightfall the equinox skies had cleared and the stars came out, shimmering like crystals. Today, it is warm and gorgeous, with wild purple aster, similar to the kind I used in my hair and as a wedding bouquet, floating in little clouds at the feet of trees. But the kid, still sick and feverish, seized this morning and has been sleeping on and off all day. So I'm inside in hie room with the shade half pulled, musing on the many travels and adventures I had with Michael before our son came into this world.

Photo by Michael Kolster

sleuthing

Mother. Nurse. Doctor. Neurologist. Teacher. Therapist. Friend. Pharmacist. Coach. I am all these—at once—to my son.

I've also had to become a bit of a sleuth.

In our eleven-and-a-half year struggle since Calvin's epilepsy diagnosis, I remain vigilant in my search for ways to improve his life, to lessen his seizures, to better his balance, to strengthen his body, to boost his immune system, to improve his sleep, to stimulate his bowels, to reduce his dependence on pharmaceuticals, to mitigate his malaise. I try to be as analytical as possible, taking copious notes in a daily journal, recording his seizures and sleep patterns, his behaviors, changes to his skin and circulation, and alterations in his balance and coordination while also noting any changes to his drug and supplement regimen.

I've memorized much of Calvin's drug protocol since he began taking them shortly after his birth and, more so, since he began having seizures. Since giving up on Miralax when I heard of a study that said it might cause behavioral side effects in children, I've tried various home remedies to relieve Calvin of his persistent constipation, which I believe can add stress, decreasing his already low seizure threshold. 

Six months ago, or so, I began giving Calvin ground flax seed as one of those remedies. I can't remember if it was recommended by a nurse or if I came to it in my own research. But it never quite seemed to work and, on the contrary, Calvin seems to be as backed up as ever lately. So I consulted the oracle yesterday in my quest to find other stool softeners. There, I was reminded that flax seed works as a stool softener by drawing liquid into the gut. Mulling that fact over this morning, the thought occurred to me that flax seed might also absorb medications. So after putting Calvin on the bus I did some further investigation. My hunch was correct. Moreover, flax seed, if given in large amounts without enough fluid, can lead to bowel obstruction. Here are some of the side effects of flax seed that concerned me, as listed on the Mayo Clinic page:

Abdominal pain and bloating, bowel obstruction, change in bowel habits, decreased absorption of drugs, vitamins or minerals, diarrhea, gas, headache, indigestion, malaise, mania or hypomania, nausea, seizures, unstable gait.

Suffice to say I gave Calvin his last dose of flax seed today. I hope we can see benefits from it's cessation. Perhaps he'll poop more easily. Maybe he'll perk up some. Maybe his seizures will lessen a bit. Perhaps his fits of mania will relent.

I'm always sleuthing for that elusive silver bullet, which Michael denies exists. But clearly, if I don't keep looking—and digging more deeply—I most likely won't come across it.

alone with my thoughts

Sometimes, when I am alone with my thoughts, I find myself wondering which would be worse—if Calvin were to die, or if I had to spend the rest of my life caring for him. I never reach any conclusions.

Yesterday was one of those days. I was stuck inside again with my seizing child who never got back to baseline after the first three seizures, and seemed on the verge of having a fourth all day long. For hours, I watched him fidget endlessly, as if he had ants in his pants and itchy fingers. I followed him around the house as he rambled aimlessly, banging tables and doors, drooling on windows and sills, biting book cases and chairs. I changed countless diapers, soiled bibs, kerchiefs and clothes. These behaviors are not altogether uncommon, but that he didn't engage with me, seemed unaware of my presence most of the time, was less usual. He was camped out, whether consciously or not, in his own post-ictal, drugged-up world. Aside from keeping him safe, I may as well have been alone. Just watching him, I could feel my shoulders cinch up into knots waiting for the next seizure to hit. My brow puckered from tension, tedium, frustration, fatigue and sorrow, my spirit ached from too many hours of little to occupy my thoughts but the myriad of missed opportunities, and the senseless waste of lives meant to thrive and grow.

In-between diaper changes and feedings, I saw a photograph of a dear friend's small child. In it, the boy is standing on a beach, his supple arms and legs exposed, his pudgy little feet and fingers dipped in sand. Calvin should have been like that boy, I thought to myself with a lump in my throat. Healthy. Steady. Able. Aware. Full of potential.

Last night I sat alone eating dinner while watching an account of Rohingya Muslims fleeing Myanmar. In it, Rohingya women wiped tears from their faces while recounting the raping, butchering, burning and burying alive of their husbands, mothers, children, sisters and brothers before their eyes, all part of their nation's ethnic cleansing. Cleansing. Who coined such an antiseptic term for such gruesome crimes against humanity, for genocide? I cried with the mothers, lamenting my own loss which pales in comparison to what most in the greater world face. I thought about how, if only for my own suffering child, I might board a plane to go aid refugees. If only for that simple fact—though I love to hold my precious, feel his breathing and heartbeat, kiss his supple cheeks, stroke his head—I could get the hell out of this life which at times, like yesterday, feels like such a waste.

 EPA/STRINGER

confronting other(s)

The children mulled around in the shade drinking cream soda and lemonade, while grownups huddled on the patio nibbling sushi and drinking wine and pale ale. We three were some of the first to arrive. I started off by greeting our hosts with some kosher tidbits while Michael held Calvin and spoke with some folks he hadn't seen in a while. I brought Michael a beer then escorted Calvin to the kids' buffet. We stood by ourselves aside the picnic table as I fed my drooling boy bits of sushi, chunks of cheese and bites of tortellini. He guzzled pink lemonade from an open cup that I held up for him. After some time, having been unable to drink a beverage while tethered to my son, I grew tired of standing. I spied a comfortable spot to rest, a few cedar benches in the back of the shallow yard. There, Calvin wanted to sit on my lap where he was content for a bit, hugging me and kissing my nose. From our perch, I watched the partiers snacking and laughing and taking sips from their drinks. Calvin and I remained by ourselves awhile longer, but no one came over to say hello.

The thought occurred to me that some folks might subconsciously think Calvin is contagious, or perhaps simply repellent, like when a certain woman—not really a friend, though no stranger to me—regularly averts her eyes to avoid us at the grocery store. After all, even I've felt disgusted by my own child at times. Then, I thought that perhaps some of the guests might've been avoiding the risk of hearing too many wearisome details about our fucked-up kid (I can tend to go on ad nauseum when asked about Calvin) prompting them to steer clear. Perhaps it's best, however, to assume that no one noticed us sitting there. Nevertheless, I rarely hesitate inserting myself into gatherings where there are more than a handful of folks I don't really know. So, with my shirt-stained child in hand, I dived into the eye of the storm, asked a dear to pour me a drink, sat Calvin next to me on a low slab of granite and chatted with several friends, craning my neck skyward to see their lovely mugs. A good time was had by all.

At home later I recounted the party and how nice it was to laugh and smile, see friends and enjoy how well Calvin faired amongst the hubbub, reminding myself how long it has been since I've worried about him having a seizure at that time of day. I still questioned the half hour or so of solitude, though thankfully I hadn't observed anyone, not even the children, gawking or casting aspersions, unlike strangers sometimes do. Everyone had been kind and inviting. I realized that the world has made some progress regarding Other since I was a child, and that I live in an pretty inclusive town.

At dusk, Michael and I sat down to eat the baby back ribs he'd been braising in onions and wine for three hours. We watched the film I Am Not Your Negro, in which James Baldwin so eloquently describes what it is to be Other in this nation, specifically to be Black. And though I myself have been drawn to Other (non-white, non-straight, non-Christian, non-American in my case) since I was a youth, and though my social circle, romantic and otherwise, has always been racially and ethnically diverse, it wasn't until after the birth of Calvin—through the lens that is him—that I began to see with greater clarity what I'd known quite well for some years, namely the shunning, the maligning, the misunderstanding, apathy and injustice that Black people experience in America.

Even in the face of mounting evidence revealing the legion of innocent Black men, women and children who have been beaten, choked, shot and killed by police, many Whites remain in denial. They stand their ground and condemn the innocent by saying that the victims should have simply not resisted, selectively forgetting the doomed who did comply. They complain that Black people are bitter and angry and should simply "get over" slavery, an admission that proves their willful ignorance of the conspicuous struggles that Blacks continue to face, all of which were born out of slavery itself. They fail to see how daily life is more of a struggle for some people—i.e. people like Calvin and People of Color—because of stereotypes, discrimination and other societal and systematic impediments. Many Whites, even those who insist they aren't racist, feel entitled to judge how an oppressed people peacefully protest their subjugation (think Colin Kaepernick's taking a knee during the National Anthem to protest police brutality and other mistreatment against Black people) in a nation where we are all ostensibly free and equal. Would those critics condemn suffragettes today?

James Baldwin's words still resonate:

But, you know, when the Israelis pick up guns, or the Poles, or the Irish, or any White man in the world says, "Give me liberty, or give me death," the entire White world applauds. When a Black man says exactly the same thing, word for word, he is judged a criminal and treated like one and everything possible is done to make an example of this bad nigger, so there won't be any more like him.

Too many Whites don't truly know their Black brethren, haven't befriended them or spent time in their homes, haven't broken bread and imbibed with them. Instead, they keep their distance, glued to their sets and their radio maniacs and talking heads, which spew ceaseless lies about an entire race of people whose enslaved ancestors literally helped build this nation, yet who bear the burden of racist policies and the rotten policing many Whites want to believe are anomalies.

James Baldwin articulated this phenomenon so effectively when speaking about the Birmingham Campaign in 1963, in which police used fire hoses and attack dogs against peaceful civil rights protesters; he might as well have been describing Ferguson, Missouri:

White people are astonished by Birmingham. Black people aren't. White people are endlessly demanding to be reassured that Birmingham is really on Mars. They don't want to believe—still, less to act—on the belief that what is happening in Birmingham is happening all over the country.

The other day I read a recent account of an eight-year-old boy of color from New Hampshire who had been hung from a tree with a tire-swing rope by some White teens spouting racial slurs. He suffered rope burns so bad his little neck bled. I hear stories every day of Black men and women, some of them dear friends of mine, being harassed, mocked, threatened, beaten by white civilians. I see acquaintances on Facebook sharing stupid memes about the righteous removal of offensive Confederate monuments. Their ignorance is clear to me. I mean, you don't see swastikas and monuments of Hitler and his generals populating Germany.

I went back to thinking about the nice party, about my peculiar boy and how, in retrospect, no one really seemed bothered by his presence. Then I considered the larger marginalization of disabled people in this nation and the advances they've made, and I wish the same for Black Americans who have suffered deeply and who continue to pay dearly, some with their lives, for nothing more than the pigment in their skin. Another quote from James Baldwin came to mind:

Not everything that is faced can be changed, but nothing can be changed until it is faced.

I recalled a moment years ago, back when Calvin was wearing his safety harness due to his poor balance, when a classmate of his asked me if he was a dog. I was determined not to let her get off easy.

"No, I said, "Are you a pig?"

She visibly shuddered at the notion, frowned and hurried away.

The only thing the girl chose to see was that Calvin was somehow different and, for whatever reason, rather than be kind and open to understanding, she decided to be mean. Her reckless judgement stemmed directly from her willful ignorance and indifference toward Other exposing her own failures and inadequacies.

We all choose who and how we want to be.

Photo by Michael Kolster

faith of my father

Originally published in The Sun magazine, August 2014

Barbecues with friends are supposed to be fun. Kids are meant to be running around barefoot, playing tag or whacking croquet balls across freshly cut lawns while the adults lounge on the deck with sweaty drinks and salty chips. Everyone is relaxed, enjoying the opiate of burning coals and the serenity of cumulous clouds drifting by.

But not this one. The gin and tonic my friend Kellie had given me as I’d reclined in a bay window did little now to ease my worry over my listless two-year-old boy. Calvin slouched limply in my arms in the late-afternoon heat, the cicadas’ buzz splitting the muggy air. Suddenly the color drained from his face, and his mouth twisted into a grimace, as if he’d eaten something rotten. As the seizure took hold of his brain, his body stiffened into a plank, and his glassy blue eyes rolled back into his head.

“Here it comes!” I called, and Kellie and my husband, Michael, came running.

Guests who were inside quickly ushered their kids out. “Daddy, what’s the matter?” I heard one child ask from the other side of the screen door. I have no idea what the father told his child or if he even knew what was happening.

“Call 911!” I said. Calvin began convulsing, his eyes fluttering, his lips smacking with each new spasm. We turned him on his side and pulled down his diaper. I grabbed the vial of rectal Valium from the pouch in his stroller, cracked off the cap, and carefully inserted the tip into my child’s rectum. One, two, three, I silently counted as I depressed the syringe, injecting enough benzodiazepine to knock a full-grown man out cold.

By the time the ambulance arrived, Calvin had started to come out of it. The medics surrounded us, shielding us from the view of the concerned party guests. I recognized one of the EMTs from a previous 911 call, but I didn’t acknowledge him. I was fixated on my boy’s catatonic gaze. After looking Calvin over, the larger of the two men gathered him up and carried him to the ambulance. I climbed into the back and reclined on the gurney. The medic placed Calvin in my lap, loosely buckled a seat belt across my legs, and fit an oxygen mask over my son’s mouth and nose. Michael followed in our car.

As the driver pulled away, I watched the barbecue party disappear around the bend in the rutted gravel lane, the parents and kids standing in the yard, a mother resting her hands on her child’s shoulders.

When Calvin had been diagnosed with epilepsy three months earlier, I’d simply added it to the long list of neurological conditions he’d had since birth: ventriculomegaly, ocular and cerebral visual impairments, hypothyroidism, global hypotonia, global developmental delay. (So much for “As long as he has ten fingers and ten toes . . .”) I’d always figured epilepsy was a relatively benign condition. What could be harder, I thought, than getting down on your hands and knees for hours each day, teaching your infant to crawl by supporting his trunk and moving his limbs one by one? What could be harder than enduring two years of colic: seeing your child writhe in pain and hearing him scream for much of the day without being able to soothe him? What could be harder than knowing your child might never walk or talk or read or write or live life independently? At that time I had no idea the answer to those questions was “Epilepsy.”

The summer before we were married, Michael and I vacationed in Brazil. We traveled north along the coast to Salvador de Bahia, where we visited the Church of Nosso Senhor do Bonfim. We had already started trying to conceive a child. It was hot as we climbed the stairs to the stucco church. In a back room plastic limb —hollow arms, legs, and heads—were suspended from the ceiling. Some had been tagged with ribbons; others had stickers bearing the names of the ill, the wounded, the dying. The talismans had been hung by loved ones hoping for a miracle. Pocket-sized photographs of the suffering people were tacked to the walls, a sea of snapshots, their edges curling in the moist heat. I looked up, eyeing the bottoms of feet, the tips of fingers, the plastic heads, and I pondered the faith these supplicants had in a God who seemed to answer some prayers but not others.

Later we sat on the steps of the church under the Brazilian sun, and Michael tied a sky-blue ribbon—a Fita do Bonfim—around my wrist and knotted it three times. As he tied each knot, he told me to make a wish, as was the custom. We’d heard that the ribbons had been blessed by parish priests, and though we had both long since abandoned religion, we liked the symbolism: a wish knotted tightly, so that when the bracelet finally frayed and came off, the wish would come true. With the first knot I wished for a happy marriage. With the second I wished to become pregnant. And, as Michael tied the last knot, I closed my eyes and wished for my child to be healthy.

Calvin had a second seizure in the ambulance. Once we arrived at the hospital, they wheeled us into the brightly lit emergency department, with its shiny lino­leum floors and khaki curtains hanging from tracks in the ceiling. Nurses transferred Calvin to the hospital bed, laid him on his side, and draped a blanket over his body. I told them that Calvin’s behavior seemed odd; that usually, after the administration of Valium, he’d fall asleep, but this time his eyes remained open and fixed, with none of their familiar jerking and roving. His countenance worried me. Though he wasn’t convulsing, I feared that he was seizing again, silently. The doctors and nurses encouraged me not to fret. Michael sat next to Calvin’s bed and held his hand while I called my brother and cried into the phone, licking salty tears from the corners of my mouth. My brother’s voice trembled at the news, and I knew he was crying, too.

Until the death of my father in my thirties, I’d skated around the edges of other people’s tragedies: a high-school friend whose own father had died in a car accident; another whose sister had succumbed to leukemia; a childhood teammate who was killed in a plane crash, along with his father, the day before his twenty-third birthday; my best friend from middle school, who, as a young woman, had a stillborn daughter. Other friends and acquaintances had endured the drawn-out illnesses and loss of parents, siblings, children. None of the survivors spoke to me of how they coped with their grief, nor did I ask.

When I was fourteen, my friend’s two-year-old sister nearly drowned in the family’s backyard swimming pool. Her mother fished her out and resuscitated her before the medics arrived. No one knew how long the child had been facedown in the water. My family lived just two houses away, and I was about to mow the lawn when the mother’s eerie howling echoed into my backyard. A little while later my father came outside to tell me of the accident, and we stood there, shocked, his hand on my shoulder.

The toddler remained in a coma for nearly a week. My friend told me that her mother had prayed to God to save her daughter, offering to give up cigarettes in exchange for a miracle. Though I understood the mother’s desperation as much as any teenager could, and though I’d been raised Catholic, I couldn’t understand a God who would allow this to happen. It just didn’t make sense to me that this child, this mother, this family should suffer so.

The girl survived, but she sustained brain damage. After that incident any faith I might’ve had in the God of Scripture began falling away like dead leaves from a tree.

The attending emergency-room physician arrived, and I listed Calvin’s various diagnoses and suggested that it might be wise to give him an IV, in case he lacked fluids or in the event that he might suffer another seizure and need more medication. I asked for their most skilled IV technician, explaining that Calvin’s veins were particularly difficult to find because of his low muscle tone and layers of baby fat. He had a history of being stuck with needles scores of times in his arms, wrists, and ankles without any luck. The doctor insisted that the nurse assigned to Calvin just happened to be their best, but when she wouldn’t meet my gaze, I knew she wasn’t. And although she tried valiantly, she failed. Then Calvin slipped into another seizure, beginning with the faintest twitching, imperceptible to the others, who continued to doubt my observations. Minutes later another, more skilled, IVtechnician arrived and confidently took over. She tried for ten minutes, sleeves pushed up past her elbows, while Calvin’s convulsions intensified until they racked his body. But she, too, couldn’t hit a vein. Michael and I could do nothing but stand by helplessly with our hands on our boy.

As a child I attended Catholic parochial school and went to Mass most Sundays. I’d sit in the pew among my five older siblings, gazing into dusty rays of sunlight or through the stained-glass windows to the trees and the sky beyond. The silence between recitations from the altar was punctuated by hollow coughs, babies’ cries, and the creak of the wooden kneelers. I tried in vain not to laugh when my siblings whispered jokes in my ear. During hymns our giggles were drowned out by the monotonous drone from the mouths of well-dressed couples seated beside obedient teens, fidgeting toddlers, and infants in frills and bonnets.

I was curious to know what went through the minds of these sober parishioners who sat picking at the lint on their trousers or smoothing an errant crease. Were they thinking about lunch or dreaming of the sweetheart they’d once kissed in the woods behind the school? Maybe some of them were silently annoyed by the tie they had to wear or the itch that begged to be scratched beneath their pleated skirt. Or perhaps they were lamenting the sins they’d committed and would have to confess inside a dark closet to avoid eternity in hell. I’d done so myself, reluctantly admitting to an unfamiliar priest behind a lattice that I’d mistreated a friend or cursed at my mother—though I hadn’t divulged what I’d done between my legs that had felt so good, so right.

During the homily I never felt anything but the hard slab of wood on which I sat, the tile floor beneath my feet, and the desire to be released. I’d think about everything else I could be doing on a Sunday morning, like sleeping in, reading the comics, or climbing trees. I’d look up at my dad, sitting motionless with his austere expression, and try to guess what he might be thinking about. His mind didn’t seem to be on the liturgy. Sometimes his gaze, like mine, would wander to the sky and the trees outside the window.

Michael and I leaned over our seizing boy and offered soothing words of encouragement: “Come on, Calvin. You can do it. Everything’s going to be OK.” But after twenty-five minutes all I could think was that brain damage had likely begun to occur and that my only child’s vital organs might soon begin to shut down.

At that point a pediatrician entered. I gave her a quick summary, and she sat down to try to thread the butterfly needle into my son’s tiny vein while he spasmed. She had as much trouble as the nurses. Finally her needle punctured a vessel, and a bolus of the anticonvulsant Fosphenytoin leaked into Calvin’s bloodstream. I wondered if it burned, if Calvin’s seizing brain had some awareness of the foreign liquor commingling with his blood. I put my hand to his forehead, which felt clammy, and I waited for something to change.

I never once heard my dad utter a word about God save during the grace he recited by rote each night before dinner. The way the words tumbled from his mouth in a garbled strand of syllables made me think he was as skeptical as I was that some deity was calling the shots from on high. Nothing he ever said or did indicated any piousness. If anything, Dad’s faith seemed rooted in the splendor and majesty of nature: the trees, the rocks, the animals, the stars, us. I saw it in his love of gardening, his passion for being out in the sun, his way with animals, how he held my hand and taught me to make a blade of grass sing between my thumbs. I’d watch him sometimes as he regarded a body of water, or mused on passing clouds while lying next to me on a blanket, or searched the night sky for falling stars. I learned from him the sacredness of the natural world. I appreciated its balance, its plain and honest beauty, even its unpredictability, which at least expressed no judgment or dogma.

The seizure raged for another twenty minutes. As I leaned on the edge of the hospital bed next to Calvin, I wished I could feel his pain for him. The emergency medications appeared to have failed my boy. His fingers, toes, and lips were the color of plums, his oxygen-deprived skin ashen. His body still spasmed in rhythmic bursts. In my research on epilepsy I had read that the longer a seizure lasts, the harder it is to stop, like a runaway train speeding downhill. It seemed we had no choice but to watch our boy crash right before our eyes. The only solace was in hoping he was unaware of what was happening to him. He’s going to die now, I thought, and I felt sure my husband was thinking the same. Trying to blot out the presence of the medical professionals, who by now had stopped trying to save Calvin, we wrapped our arms around him and told him we loved him and that he was going to be OK. We stroked his arms and legs, brushed his wispy blond locks from his face. When I kissed his neck, I realized it might be the last time I’d press my lips against his warm flesh.

When he was sixty-five, my father had a bone-marrow sample extracted from his hip and biopsied. My mother told me that he’d had no anesthesia before the doctor had bored a hole into his pelvis, and that my father had come out of the room with a sickly pallor, drenched in sweat. For years they treated the cancer they found with regular bouts of chemotherapy, which sapped his vigor and stifled his appetite until he was a six-foot-four rack of bones. I watched this father of mine—this fine athlete, this track-and-field champion—wither and tremble. When I held his hand in the weeks before his death, it felt as thin-skinned as his ninety-five-year-old mother’s. He and I didn’t talk about the cancer, or death, or what he believed might happen after he died. It seemed of little consequence during the moments we shared. We just sat in relative silence, and I rubbed his back, and he held my hand.

After he died, my mother gave me a jar of his ashes. I rolled the glass around in my hand, held it up to my ear and shook its contents: tiny pieces of bone and grit. I unscrewed the cap and sprinkled some ashes into the palm of my hand, pushed them around with my finger as if writing in sand. Then I touched the center of the pile with my tongue. It tasted like chalk. Ashes to ashes, dust to dust, I thought, and I smiled at the irony: the one piece of Scripture I could finally embrace.

Months later I scattered some of those ashes in a wooded glen on the side of a mountain, and the rest I tossed into the wind beside the sea. It made perfect sense for my father to become part of the universe in this way.

Had I not been in a state of shock, convinced that my only child was dying—my beloved boy who had never been without pain of some sort, who had never developed the words to tell us how much he was hurting—I might have thought unkindly about some of the things people had said to me over the years. I might have recalled the times that family, friends, and even complete strangers, upon hearing about Calvin’s terrible deficits, had said, “There’s a reason for every­thing,” or, “The Lord works in mysterious ways,” or, “God doesn’t give you anything you can’t handle.” And then I might have thought about what I had wanted to say to them: “What reason could there be for a terrified two-year-old boy to have a too-big tube shoved down his trachea without anesthesia, withdrawn bloodied, then reinserted, all while he screams in pain?” Or “If God doesn’t give us anything we can’t handle, then why do some people kill themselves?” And then I’d imagine the plethora of other ignorant platitudes that float inside people’s heads about kids like Calvin and parents like Michael and me. Or perhaps I’d have thought of the comment that my best friend’s Catholic aunt had made to her when her daughter was stillborn: “The saddest part is that she’ll go to hell, since she wasn’t baptized.”

But I didn’t think about those things. I also didn’t think about my Fita do Bonfim bracelet, which years earlier had worn thin and broken, along with the promise of a healthy child. I didn’t think about the plastic limbs adorned with people’s written pleas to God to save their legs, their lungs, their hearts, their brains. No doubt some of the portraits neatly tacked to the walls of that Brazilian church belonged to people with epilepsy.

No, all I thought about was my Calvin and his little birdlike chest, his silky skin, his slender fingers. I meditated on the smell of his hair, the sensation of my lips on his neck, where I might have felt a faint pulse, though I couldn’t be sure. I just thought about kissing my boy, perhaps kissing him goodbye.

And then, after having burned for at least forty-five minutes, the seizure stopped.

By that time a pediatric intensive-care team had arrived to transfer Calvin to the Maine Medical Center, where difficult cases like his were handled. So we were loaded into the ambulance as twilight deepened. The barbecued meats and vegetables that our party hosts had brought to the emergency room, complete with cutlery and cloth napkins, had become shriveled and cold. In the dim ambulance we began making the thirty-five-mile drive. I lay with my son in my lap again, the needle in his wrist bandaged in place, a tube down his throat, a glowing red oxygen-saturation monitor stuck on his toe, and I wondered if he’d ever wake up, if I’d ever again see him smile and feel his soft hands on my face.

Dozens of hospital stays later, Calvin is ten years old—bigger, yet still so much like a baby. He remains in diapers. He can’t read a book, can’t speak a word or walk all by himself. He can’t believe or disbelieve in God. He still has seizures, despite taking huge amounts of medications to thwart them. But he’s here now, and, as my father and I used to do, Calvin and I live in the present moment, breathing the fragrant air, feeling the sun warm our backs, touching the trees and grass, and smelling the lilacs and peonies. We hold hands, embrace, rub each other’s heads, listen to the birds and the wind in the trees. Together, we exist.

When I was about Calvin’s age, my father used to come to my bedroom to say good night. I would complain about aches in my legs. “Those are growing pains,” he’d explain. Then he’d take one shin at a time in his large, strong hands, and he’d firmly press and massage the muscles like a trainer. Afterward he’d scoop me up like a bundle of kindling, slide me under the covers, kiss me good night, and say, “You know I love you, don’tcha, kid?” As he left, he’d pull the door shut behind him until only a thin slice of light shone through the crack. There were no bedtime prayers, no blessings, no mention of angels in heaven—it was just my dad and I and the clouds drifting across the moon and stars outside my bedroom window.

Me and my Dad, 1965

gravity and more

Perhaps it's the gravity of the full moon that puts the world off-kilter and sends things spinning.

In the hours before the moon began to rise, my boy showed every harbinger of a grand mal: grousing, manic outbursts, foamy drool, rashy buttocks, shrieking, cackling, dropping down, huggier than usual, incessant eye poking. I had no doubt that, like the moon, a seizure was on the horizon.

At two-forty in the morning the seizure took grip, Calvin's telltale guttural scream announcing its arrival. His convulsions lasted the typical ninety seconds. I gave him his clobazam early. We changed his diaper. I crawled in bed next to him. I didn't get any sleep from then on.

I had seen the moon out the bathroom window thirty minutes before Calvin's fit. It hung there in its ominous beauty, partly shrouded by passing clouds like in so many horror films. I closed my eyes and imagined extreme tides, the women giving birth that night, the children having seizures, the folks doing dangerous and threatening acts—all things the full moon is thought to induce. I recounted the day's news of unhinged, ignorant, egomaniacal presidents, nuclear warheads, category-five storms, immigrant children—the best of the best who know no home but this America—threatened with banishment, and I wondered if the moon's gravity somehow yanks the egos and eccentricities of certain jackasses in power. But then I thought better, knowing full well that jackasses will be jackasses no matter the planetary alignment.

And then I heard the three-thirty train coming through. It rolled on by slowly, the grind and bump of its steel wheels percussively churning like drums. I imagined the engineer tugging on a cord to sound the whistle. This one does it with finesse, I thought. I've heard it before. It starts with a softness then gradually crescendos—not too loud—before falling off into the pulsing of the wheels and of my son's heart. The other drivers seem to thunder through town, blasting their whistle time and again like a child at the helm, or some reckless president. My engineer is a musician, the whistle his or her orchestra. No wonder they call them conductors, I thought, just as I realized I was drifting off to sleep, before that very realization roused me again.

Earlier in the day Calvin had had his first day of seventh grade. I met him at school, stayed a while, gave him his lunchtime meds. On the way back from the cafeteria we met throngs of students. I regarded the children, skinny, shoulder high and taller, seemingly twice Calvin's height. I saw my friend Andrew, the social studies teacher, and thought about what his students will be learning this year. You can really teach these kids things, I said to myself, both in remembering myself at that age and conscious of how little my own boy has been able to master, then followed the thought with notions of truth, virtue, kindness, compassion, inclusion, selflessness, charity. Then I wondered where people learn to be greedy and lust for power, wondered where they learn to fear and hate other.

As the moon slid behind some clouds, perhaps covertly tugging Calvin into his grand mal, I laid there hoping the next hurricane, Irma, will spare my in-laws in Florida, hoped the Dreamers will be free to stay, hoped that Kim Jong-un and Trump will see the gravity of their actions, agree to put aside their egos and put down their arms. Seems like peace between nations of our Earth should be ridiculously simple. Perhaps it would be in a world where Venus had more pull.

to the laborers

I've always been amused by the contention that brain work is harder than manual labor. I've never known a man to leave a desk for a muck-stick if he could avoid it.

―John Steinbeck

It is difficult to get a man to understand something, when his salary depends on his not understanding it. 

―Upton Sinclair 

On this Labor Day I post in honor of the world's laborers—the poor, the underpaid, the overworked, the struggling, the underaged, the disadvantaged, the enslaved, the minority, the immigrant, the intellectually disabled—who assemble the products, who serve the public, who harvest the crops, who pack the meat, who forge the metals, who sew the clothes, who mine the ores, whose collective voices fought for the rights all of us enjoy, and on whose backs wealthy investors make millions, whether consciously oblivious or willfully blind, to the magnitude of the laborers' toil and the inadequacy of their take.