How Books Helped Me Come to Terms With My Daughter’s Illness

The ward is dark, but not really. There are lights on machines, dim lights in the nurses’ station, a blue glow from ceiling-mounted TV screens. Every twenty seconds a beep shrills. My daughter is sleeping, but I can’t, the fold-down vinyl armchair and thin blanket not shield enough against the cold blast from the grill by the window, not to mention the asthmatic two-year-old on the other side of the curtain and her tattooed father who prides himself on having stayed at her side for three days straight. I edge my way around my child’s bed, past the pulled curtains enclosing the father and daughter, and head into the hall for another stunted weep in the family washroom, where the cleaning crew that empties the garbage once a day has not yet come. The can overflows with cookie wrappers, toothpaste boxes, and untold wads of one-ply tissue.

I can’t keep the specialties straight: nephrology, cardiology, hematology, rheumatology, infectious diseases, oncology. This last unleashes the tears, my mind scuttling to the place where words won’t come. I splash cold water from the metal sink onto my face, careful not to touch the foam-clotted toothbrush some parent has left near the tap. I blot my skin with abrasive paper towels. I brush at a stain on my leggings, adjust my bra strap, lift then drop my mat of long hair, and launch back into the hall, hoping my daughter hasn’t woken up. When I near her room, a doctor emerges.

“She has fluid in her lungs and around her heart,” she says, “We have to prepare for the worst.”

The next day, doctors diagnose my daughter with the treatable autoimmune condition lupus. Yet I have already descended irrevocably into the territory of her death. Even now, months after those desperate autumn weeks — she is healing; she has remission in her sights — her loss grips me tight.

During my daughter’s hospitalization, I remember Lorrie Moore’s story, “People Like That Are The Only People Here” — the narrator’s bright, angry tone, her condemnation of doctors and indignation at her baby’s cancer diagnosis:

You turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room — the best boundaries of it. Are there windows? Sometimes aren’t there windows?

Moore accurately captures the dark, frantic humor that springs from bleak rage in the face of a child’s demise. I take comfort in knowing that she based the story on her experiences with her son, and that her son survived.

During the earliest days of hospitalization, through the bleakest uncertainty and the first hopeful wave of treatment, I wrote a story for a magazine. The story’s optimism fills me now with shame, largely because of how it skates over truths. The story spins a light, woman-against-the-elements tale out of an El Salvador surfing excursion my husband and I took in the time before parenthood. Doctors admitted my daughter to the hospital eleven days before our scheduled wedding date. Nine days later, she collapsed and entered pediatric intensive care. The magazine rejected the story. We postponed the wedding. I haven’t looked at the story since.

Doctors admitted my daughter to the hospital eleven days before our scheduled wedding date. Nine days later, she collapsed and entered pediatric intensive care.

Yet in those September days before my daughter entered PICU — the air balmy, infused with pink-gold light, the leaves turning rosy — I wrote, curled up in an armchair squeezed between the hospital bed and the window overlooking the emergency entrance of the children’s hospital. Between visits from doctors, nurses and child life workers, food deliveries, bloodwork and ultrasounds, I kept pace with my wedding plans, with extensive help from family and friends. And I beavered away at the story.

We had spent that summer in search of an answer to our daughter’s fatigue and joint pain, in and out of Emergency. Yet we camped, went to cottages and weddings. My daughter attended theatre camp and played baseball. We hypothesized, considered depression, a reaction to medication, growing pains and imminent menstruation; we lined up specialist appointments. She was nine.

While my husband worked long days, her sister and I molded our lives around her fatigue, spending our days close to home while she lay on the couch as if in a stupor or sat outside on a patio chair. One afternoon, I fought with her about swimming at the outdoor pool a ten-minute walk from home. She’d woken up from a three-hour nap and refused to get out of bed.

“You promised,” I said, the more childish of the two of us.

“I can’t do it!” she screamed.

I believed her about her fatigue but found it hard to accept how much her illness was affecting our lives and how helpless I felt. Allowing that she might have a serious illness meant acknowledging the possibility that she might die. I resisted entering that territory as long as I could.

Having walked with my daughter right up to the brink, canceling our wedding only 48 hours before it was scheduled, I flog myself with complaints: we could have canceled sooner. I could have devoted myself earlier to my daughter’s care, when the first signs of slowing down and pain appeared. In “People Like That are the Only People Here,” the Mother faces her own moments of self-blame, thinking that her son’s illness is a punishment for her motherly transgressions: “Now her baby, for all these reasons — lack of motherly gratitude, motherly judgment, motherly proportion — will be taken away.” As I castigate myself, I find comfort in stories in which other parents consider their own failings in this light.

Allowing that she might have a serious illness meant acknowledging the possibility that she might die. I resisted entering that territory as long as I could.

The Abraham Lincoln character in George Saunders’ Lincoln in the Bardo is such a parent. Saunders focuses on the time leading up to and following the death of Lincoln’s eleven-year-old son Willie, likely from typhoid fever. Over one hundred voices clamor to tell the story. Many are unwilling ghosts; others are historical accounts of Lincoln, real and invented. These snippets surround the evening of a party the Lincolns hold while their son suffers upstairs on what turns out to be his last night. The testimonials explain and criticize not only Lincoln’s role in the Civil War but his choices as a parent, creating a democratic picture of a personal, though universally felt moment in the president’s life.

“Critics accused the Lincolns of heartlessness, for planning a party while Willie was ill,” fictional scholar Ann Brighney writes in Lincoln in the Bardo. A real scholar, named Leech, makes a related point: “In retrospect, the memory of that triumphant evening must have been blotted with anguish.”

Parenthood presents many opportunities to make a less-than-ideal choice. I made the right, difficult decisions in the end: canceling the wedding, centering my life around my daughter’s care, advocating for support and privacy. But my behavior when she first felt pain and fatigue haunts me. Ghosts populate Lincoln in the Bardo. They speak and relate and evolve and transform. These ghosts also live in denial that they are dead, a parallel denial to Lincoln’s refusal to accept that his son had a condition serious enough to take his life. What better way to flout the unthinkable inevitable than by hosting a party?

In the days leading up to our original wedding date, we consulted with doctors constantly about the likelihood of our daughter attending the event.

As I castigate myself, I find comfort in stories in which other parents consider their own failings in this light.

“Should we hold it at the hospital?” we asked ourselves. “People do that, right?” (Apparently not, unless the bride or groom is dying.)

“Should we hire a nurse to bring her?” we wondered. “Could she use a wheelchair? Are heart rate and oxygen monitors, and IV poles transportable?” The doctors indulged us. Our daughter had started treatment which the doctors expected to kick in at any time, but in the week before the wedding-that-didn’t-happen, her levels didn’t budge, the daily blood work revealing no improvement.

Lincoln’s former slave Elizabeth Keckley’s memoirs are quoted in Lincoln in the Bardo: “At least [Lincoln] advised that the doctor be consulted before any steps were taken. Accordingly, Dr. Sloan was called in. He pronounced Willie better, and said that there was every reason for an early recovery.” In our case, too, the doctor assured us our daughter would come home before the wedding.

Denial braided itself into a knot with belief in medical authority, the momentum of an impending event, and self-protection. Never once did we leave our daughter alone in the hospital; always she had a parent in the room. We talked with the doctors and the nurses and stayed present and keen, yet still we didn’t register the signs that she wasn’t getting better, wasn’t responding to the medication, couldn’t conceive of leaving in time to walk down the aisle, her arms full of flowers, at her parents’ wedding.

Yet that denial made more sense than the alternative, sinking completely into what it feels like to lose a child, as the Mother does in “People Like That Are The Only People Here”: “After this, there is no more life. There is something else, something stumbling and unlivable, something mechanical, something for robots, but not life. Life has been taken and broken, quickly, like a stick.”

Our wedding, like Lincoln’s party, represented hope, a sustainable defense against inconceivable loss.

Our wedding, like Lincoln’s party, represented hope, a sustainable defense against inconceivable loss.

Under the guilt Lincoln’s critics ascribe to him lies the expectation of retribution for the bodies dying on his watch on the Civil War battlefields. A child’s injury or illness, the parents’ pain in its wake, can be redemptive, too. This dreadful situation humanizes the parent caught in its net, showcasing her empathy and the care she administers as she rises to the occasion, its wake erasing all shadows of doubt or meanness or empathy withheld or not engaged.

Stories will often present a child’s death or illness to make sympathetic an otherwise despicable character, as The Sopranos does with Ralph Cifaretto in season 4’s “Whoever Did This.” Ralph is a loathsome mobster, despised by his boss, Tony Soprano, for having beaten a stripper to death and considered the act a joke. When “Whoever Did This” opens, a friend’s arrow strikes Ralph’s son in the eye, sending him to the hospital and a life in a vegetative state. Ralph’s pain in the wake of his son’s accident shifts him into a more solicitous light, especially as he seeks guidance from a priest about how to redeem himself in God’s eyes.

Stories will often present a child’s death or illness to make sympathetic an otherwise despicable character.

At the same time, the episode is setting Ralph up metaphorically as the Devil, going so far as to embed three lines from The Rolling Stones “Sympathy for the Devil” in the dialogue: To the surgeon, Ralph says, “Please allow me to introduce myself.” To Father Phil, the priest from whom he’s sought guidance, he says, “Pleased to meet you.” Father Phil says, “Were you there when Jesus Christ had his moment of doubt and pain?”

Ralph’s visit to the priest underscores the searching for answers we all undertake when our child is stricken:

RALPH: God? My son’s lying in the hospital hooked up to a machine. He never did nothing to nobody.

FATHER PHIL: Our Lord gave his only begotten to suffer.

RALPH: Nothing compared to this.

Ralph believes his son’s misfortune is his fault, vengeance on his own wicked ways. “He’s making my son pay for it,” Ralph says. “That’s how he’s punishing me.”

A child’s suffering defies all explanation. The idea that a divine entity engineered an accident or an illness is as unfathomable as the concept that a child’s negative energy could cause her cells to turn on each other or multiply without reason. While it’s easier to frame a child’s misfortune as a sociopathic mobster’s punishment, what about the situation of a more complex, noble figure, such as Lincoln? Should a child lost be a referendum on our worth? What about the rest of us, whose garden variety missteps are the stuff of everyday parenting? Maybe if we can feel compassion for an evil character in pain after an accident disfigures his son, we can stretch it to include our own small failures to ease our child’s suffering. In the throes of guilt, I found it easier at times to feel absolved by the villain than the more honorable man. We can empathize with our own pain as we witness it enacted by another, the more diabolical the better.

We can empathize with our own pain as we witness it enacted by another, the more diabolical the better.

If I ever return to the surfing story I wrote alongside my daughter’s hospital bed, I will align it with the real events of the day it was based on, a day I nearly drowned. My instructor and I had paddled our boards for over an hour towards a viable wave with no success, leading me to believe that we hadn’t gone far. I am an average swimmer, used to chlorinated pools and cold Ontario lakes, and uneasy in water over my head. When a wave finally came and I hesitated in turning and hoisting myself on my board, the water’s force shoved me below the surface as the surfboard skated across my hip, opening the skin. Panicked, I surfaced, clinging to the instructor, choking on sparkling aqua waves, tugging him under until he calmed me down, guided me back to the board.

Only then could I see how far we were from shore, the people tiny colored smears against the buff-grey sand. I berated myself for swimming so far out into the ocean with such little experience. At first, I refused thoughts of how far my feet would have to reach to touch bottom and willed away the sensation of the wave yanking me downward. Then my response evolved, balanced out: sometimes I walk myself up to the edge of the memory now, not to wallow in pity or fear, though that’s part of it, but to remind myself of how improbable and blessed survival is.

Sometimes I walk myself up to the edge of the memory now, not to wallow in pity or fear, though that’s part of it, but to remind myself of how improbable and blessed survival is.

In the aftermath of my daughter’s hospitalizations, I’ve struck a similar balance, if only to make my entry into the fierce terrain of my child’s death more bearable than the Mother’s broken life in “People Like That Are The Only People Here.” The guilt and denial served a purpose as I got down to the business of empathy and care. Finding myself in characters whose hapless parenting experiences matched or exceeded my own consoled me then inspired me to do better, to celebrate in the face of darkness.

The story I wrote — light-hearted and untrue — holds no place now. The story I will write will talk about how it feels to take a risk and fail and then survive, the risk we all take when we choose to love a child. I will tell the story of how not to drown.