I guess you could say we have come to the end of the circle. This is my last column for Literary Mama. But this experience has shown me that there is much, much more to tell. Like a circle, this story has no end. Love, like grief, goes on and on.
I am tremendously grateful to the team at Literary Mama for taking a chance on this column. When I starting toying with the idea of a project about my son’s life and death, three different literary agents told me the same thing: “Don’t bother. It’s not commercially viable.” Two of the three used the exact same phrase. The death of a child, they said, is the “third-rail” of publishing. “Fictionalize it,” an editor suggested. “Then you can change the ending.”
I understand the hesitation. As a culture, we avoid talking about grave illness or death, especially when it comes to children. We keep these subjects at arm’s reach, boxed-up so they can’t touch us. On rare occasions, we may dip a toe into the dark and dangerous water, but we give ourselves a life raft: The mother teaches her daughter to walk against all odds. She develops a drug that reverses her son’s degenerative disease. In the tidy stories we tell ourselves, the mother refuses to accept her child’s fate. She is a Hero Mother, and her unwavering dedication is rewarded in the end.
I was no Hero Mother.
When I learned of Luke’s prognosis, I didn’t faint or scream or tear my hair. My first thoughts were not of how I was going to save him. Folded into a rickety chair in a cramped doctor’s office, as doctors ticked through a list of all of the things Luke would never do, I didn’t offer an impassioned dissent. I didn’t pledge myself to Luke’s salvation. I accepted his fate with a torpid resignation, thinking only of how I could avoid watching my child die. I fantasized about escape, wanting nothing more than for one or the other of us—my son or myself—to simply dissolve into the ether. I yearned to be like the Hero Mothers I had seen in movies and read about in magazines. Their hearts seemed filled with courage. Mine knew only fear.
There were nights I prayed my son would die in his sleep. To watch one’s child suffer is agonizing. To know he will die, unbearable. But there is a shade of black darker than any other. Josh and I came to understand that Luke’s death would not be something that simply happened to him, to us. We would not have the luxury of being passive bystanders to the end of our child’s life. We would, in all likelihood, help shepherd him to it. This knowledge came slowly, seeded by quiet conversations about respirators, g-tubes, do-not-resuscitate orders. There was no startling revelation, no dramatic emotional breakdown, just a painfully slow awareness, so that one day I didn’t know this horrific reality, and another I did.
Like an animal that will chew off its own limb to escape a trap, I was desperate to release myself from the responsibility of choosing Luke’s life or death. Once, in the middle of one especially long seizure, my hand resting on Luke’s round, warm belly, I whispered in his ear, “It’s OK, baby. You can go.” And then, shedding any promise of Heroic Motherhood, “Please.”
But the human mind, I learned, can wrap itself around even the most unfathomable of circumstances. The unimaginable becomes the everyday. The intolerable becomes the disquietingly sustainable.
Josh and I set three criteria for Luke’s care: first, comfort; then, happiness; and finally, longevity. Each new treatment was ruthlessly measured against this hierarchy: Will this make Luke more comfortable? Will this make Luke happier? Will this make Luke’s life longer? In a move unbecoming of a Hero Mother, I surrendered myself to the fact of my son’s inevitable death, hoping only that it would come swiftly and without suffering.
Unshackled from the goal of giving Luke the longest possible life, I found I could focus instead on giving him the best one. I pored over his medical charts, studying which areas of his brain were least affected so we could make the most of those tiny patches of possibility. His depth perception was probably lousy; the ability to distinguish distinct shapes was likely limited. He did, however, seem to respond to shiny things, turning his head in the direction of flashing lights or resting his gaze on objects that caught the sun. Hannah took to stringing up sparkly necklaces over his swing and atop his activity mat. One night over dinner we watched in awe as he reached toward the necklace hanging above him, a gummy smile spreading across his face. This, for Luke, was akin to taking flight.
“That’s a huge accomplishment for your brother,” I said to Hannah, struggling to produce the words around the clot of emotion lodged in my throat. “That’s like doing the monkey bars for you, maybe harder.”
Hannah stared wide-eyed. She slid off her seat and crept to Luke’s side. “Go Lukers,” she whispered. “Good job, Lukers. You can do it.”
We were all heroes that night.
Over time, the medicine became less effective. The seizures worsened. Luke slipped into a grim cycle—seize, sleep, seize, sleep. “I’m not sure how much more either of us can take,” I confessed to the hospice nurse during her home visit one day, shedding any last delusions of Hero Mother mettle.
Still, there were options. We clung to our criteria: Would this make Luke more comfortable? Would this make Luke happier? Would this make Luke’s life longer? One day, the only affirmative answer was the last.
We admitted Luke to the hospice facility the next day. “He won’t suffer,” the nurse assured me, as she squeezed tiny doses of morphine under his tongue. We spent the next few days holding Luke, bathing him, dotting tiny dabs of his favorite vanilla custard on his tongue. When he died, just past midnight on a quiet summer night, with Josh and I curled around him on a tiny single bed, I shook with relief.
Now years later, through the blessing and curse that is Google, I might learn about a child with Miller-Dieker who is four, or five, or even eight—the age Luke would be now. The guilt will burn white hot. I’m not as good a mother, I’ll think. Luke should have had better. He deserved a Hero Mother. And I’ll wonder, if those parents who fight tenaciously for their child’s life are heroes, what am I, who surrendered to the struggle so early?
But I have decided, or at least I hope, that maybe the Hero Myth can have more than one script. Maybe the mere act of mothering—loving our children, trying to do best by them, even when it breaks our heart—is heroic enough. Even if it’s not the stuff of movies.
I learned I was pregnant with Eve the day Luke died. She was born eight months later. When she was six weeks old, as I was nursing her one quiet Saturday evening, my cell phone rang. It was Luke’s neurologist, a serious man with an aversion to eye contact and small talk. “One of the best in the world,” one of his residents had told us. “But not exactly a model of bedside manners.” We hadn’t spoken to the neurologist in nearly a year, and now he was calling at night, on a weekend. He had a new patient with Miller-Dieker, he said, and he had been thinking about our family.
“I’ve been wanting to tell you . . .” he sputtered. “I was always impressed with how you and your husband cared for your son. I see a lot of children who have . . . serious problems . . . and, ah . . . Luke was very lucky.”
When I hung up the phone, I settled Eve in her pack-n-play and rummaged through the basement closet, where I found the binder in which I had kept Luke’s medical records. I flipped to a dog-eared copy of a note the neurologist had written to Luke’s pediatrician, a talisman I return to again and again when the doubt blooms: “Patient shows remarkable response when held by his mother. Eye contact. Pleasure.” We gave him comfort, I realize, and we gave him happiness, to the very best of our abilities. We failed only on longevity.
Together, Josh and Hannah and I gave Luke a life that was short and messy and brutal and joyful and funny and blessed. He knew the soft stroke of his sister’s hand, the sweet puff of whipped cream on his tongue, the sound of his parents’ laughter. Most of all, he knew love. He was loved. He still is.