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.
Inever 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.