My cell phone starts to dance across the table, announcing an incoming call. I’ve turned the ringer off, expecting this call but hoping to preserve the quiet of the room.
“Congratulations, Mrs. Golden,” says the nurse on the other end of the line, her voice stretched across a tympani of excitement. “You’re pregnant!” She is calling from the fertility clinic, where just a few hours earlier I sat in silence as one of her colleagues sunk a hopeful needle into my purple vein to draw blood for a pregnancy test.
What I want to say in response is, “My son is going to die today. He is 16 months old, and I’m holding him in my arms right now. His beautiful, blue eyes are sunken into his skull and his breath comes in slow, heartbreaking gasps.” Agonal breathing—that’s what the hospice doctor called it, though it isn’t clear to me whether it is the patient or the witness who is in agony.
Instead, I offer the well-meaning nurse a perfunctory “thank you,” end the call, and continue to rock my son. We are at a hospice inpatient center, Luke and I tucked into a cozy, sea-green room at the end of a long hall. After four interminable days and nights, the staff has encouraged my husband Josh and me to start taking shifts, promising to let us know when the end is near. It is taking longer than anyone expected for Luke’s fresh, plump little baby cells to die.
I spent last night at home with our three-year-old daughter Hannah, then stopped by the fertility clinic on my way in to relieve Josh, who had the overnight shift with Luke. I am caught between parallel universes: in one, my baby is slowly sinking into death, while in another, NPR crackles through my car radio as I slog through Tuesday morning traffic on my way to a doctor’s appointment. My ability to straddle these two realities confounds and frustrates me. I want to fall into the abyss—it seems the only appropriate way to behave given the circumstances. I simply don’t know how.
I run my finger along Luke’s cheek. The skin is mottled and papery, cool to the touch.
“You’re going to be a big brother, Luke,” I whisper, allowing myself a single moment of delight at a relationship that would never be realized in the flesh.
It is almost impossible to hold the two thoughts in my mind simultaneously. A new life is growing inside me even as my young son’s is slipping away. When I received the same call from the fertility clinic four years prior, telling me I was pregnant with Hannah, I cried. I hung up the phone, practically skipped into a bathroom stall at the office, and let out a silent shriek of joy. This time, all I can do is take this latest news, fold it up, and gently tuck it into some corner of my brain to wait, wait, wait. This is good news. We wanted this child, Josh and I. We thought we could be a family of five, at least for a while. That is why we returned to the fertility clinic. They had helped us conceive Hannah. We created Luke all on our own.
“And look how that turned out,” we joked to the fertility doctor, who winced before turning away.
When he was five months old, Luke was diagnosed with a rare genetic disease called Miller-Dieker syndrome, a deletion in the 17th chromosome that results in lissencephaly, or “smooth brain.” At the moment of my son’s creation, that instant when sperm meets egg and the cells begin to bloom into a brand-new life, a tiny speck of genetic material went missing, an infinitesimal piece of code that instructed Luke’s neural tissue to fold itself into the grooved landscape of a normal, healthy brain. The prognosis was grim. Luke’s intellectual development would stall at infancy. He would never talk or walk, nor roll over, nor lift his head on his own. He would suffer violent seizures that would jackknife his tiny body and paint his lips blue. He would need external interventions to eat, to move, and, sometimes, to breathe.
Why did this happen? Was it something I ate, or drank, or did? I peppered doctors with these questions hundreds of times, certain of my own complicity in Luke’s dismal fate. Alas, there was no particular reason, they assured me again and again—just, as one blessedly honest doctor put it, “Really shitty luck.” It seems there are a million things that must go right to create a healthy human life. It is a wonder it ever comes together at all.
Luke doesn’t stir as I shift my weight beneath him in our rocking chair. There is less of him today than when I left last night—less of his physical mass, yes, but also less of him, his presence. I wonder if he’s already left me, in some way.
In the hall outside our door, the hospice workers shuffle quietly, carrying on the arduous work of helping the very ill let go of life, their loved ones let go of them. One of the volunteers has baked a lemon cake and brought it in to share with the waiting, grieving families. A nurse comes in, examines Luke, and gently whispers, “It won’t be long now,” an unflinching nugget of candor cocooned within a soft cloud of kindness. My God, I think. These people are gifted.
I call Josh, tell him to come back to us, and will the Northern Virginia traffic to cooperate just this once, so that a father can say a final goodbye to his son.
I’m not scared. This scenario is not foreign to me. I sat in a similar hospice room, half a country away, and held my father’s hand as he took his final breaths more than a decade ago. This is the worst it will ever be, I tell myself, just as I told my younger self back then. This time I know it’s true.
Luke’s suffering will end today. I sit at the bottom of a long and shallow slide of dread. Tomorrow I will face the even longer and shallower ramp of recovery.
In the room, there is no beeping or whirring of machines, just the silent space between Luke’s labored breaths. That space grows longer and longer, until only silence remains. The nurse comes in, puts a stethoscope to Luke’s chest, and nods to signal he is gone. Relief floods through me. But just as the nurse turns to leave, Luke inhales violently, a hollow gasp that startles the nurse and clenches my heart.
“Sometimes it takes babies a little longer,” the nurse admits with a chagrined smile. “He’s making up for all those teenage years he’s going to miss, giving you a little trouble before he goes.”
Her face shimmers behind the tears that pool in my eyes. No, Luke isn’t going to be around for his teenage years. He won’t even see the next sunrise. My job, then, is to wait, to usher my child into whatever is on the other side of his suffering. Until then, there is nothing else—no daughter, no husband, no new life dancing inside me. Their time will come. I will deal with them tomorrow.
Tomorrow is today, six years later. I have two daughters: nine-year-old Hannah, who said goodbye to her little brother forever one spring day two-thirds of her lifetime ago, and five-year-old Eve, who was born in February, same as Luke, eight months after he died. One child who barely remembers her brother and one who never knew him at all. Also a husband who, when he took his vows 13 years ago, could not have imagined how bad the “for worse” could get.
During a morning run a few weeks ago, winding along the Potomac under a shimmering canopy of late-summer leaves, the Kenny Rogers song Love Will Turn You Around started to stream through my headphones. It must have been tucked deep within the bowels of my music library, a nostalgic homage to my late father. Some karmic quirk or lucky algorithm of Apple Music had shuffled it to the top of the queue.
As my feet drubbed the asphalt to the beat of the song, I thought about the many hours I had spent after Luke’s diagnosis, daydreaming about how I might escape the unimaginable prospect of witnessing my child’s death. How in secret, shameful corners of my frightened mind, I concocted elaborate decampments—schemes involving large wads of cash and a clunky, second-hand car; a long, straight highway that sped away from a tiny baby in the clutch of a violent seizure.
“It’s your mind, that tricks you into leaving every time,” Kenny sang. With the tiny speakers wedged deep in my ears, it was as if he was standing inside my skull, belting these truths directly into my amygdala. “It’s your heart that talks you into staying where you are.”
Gazing out over the sparkling river, gulping lungfuls of peat-heavy air, I decided Kenny was right. If I had put those fantastical plans in motion long ago, love would have turned me around. For it is ultimately why I never left. But it wasn’t love alone. It was some mysterious cocktail of love and its less quixotic brethren: duty, responsibility, fear. Whatever the factors, I owe the life I have today to those forces that bound me then to the harrowing path ahead. Because in the end, Luke was the best and the worst thing that ever happened to me. With this column, I hope to show you why.