In my memory I’m standing outside the hospital with my father-in-law and his wife, and I’m smoking a cigarette. But my memory lies. I haven’t smoked in ten years, and that night, when the bark came through the baby monitor, and the paramedics broke down the front door, and my life cracked open easy as an egg, I wouldn’t have smoked even if I wanted to; I was eight months pregnant with my third child.
My memory holds that night at a distance, and I have to squint to see it: mother, father, child on the floor of an ordinary living room. Father compressing son’s chest like it was made of rubber, not tiny bones and blood and organs. A 911 operator issuing instructions from an iPhone thrown on the rug next to them.
It’s the minutiae that proves to me that I was there: the softness of my husband Jordan’s tee shirt when I pulled at it, shouting at him to get off, get off my son. Jordan’s even, matter-of-fact voice when he told me to stop screaming and put some clothes on. How near I was, and how far away, the water from the bathtub still dripping from my hair onto my shoulders, down my back, the vibration of time in my neck, the beat of my heart in of my fingertips. Hugo, my nineteen-month old son, lying on the carpet, was blue; he was blue and then he was purple, and his skin looked swollen, hard as plastic. His mouth grimaced, and his eyes were wide with shock and effort. Jordan compressed and compressed and compressed our son’s small chest, and I heard myself crying no, moaning, wailing, my own voice as inhuman as that bark had been. I remember what thought went through my head as I watched the shock fade from my son’s eyes, as I watched his limbs go still: I will never think about his disease again.
That disease had followed us like a raincloud since we got his diagnosis a day after his birth. At the time, I couldn’t think of anything worse than autosomal recessive polycystic kidney disease: a five-pound baby with a distended belly, enormous kidneys, soaring blood pressure, medicine cocktails, specialized formulas, blood draws, and insurance problems. All that work only for dialysis? Only for transplant? How is this happening to me? Me, ordinary me, and a one in twenty-thousand rare disease. Everything in my life that had once been lazy and free zoomed in to this new, terrifying mantra: I am the mother of a sick child.
By this night though, almost two years later, I was seasoned. I had accepted Hugo’s difference, and my own. I kissed his big belly nightly and taught him to be proud of it. I knew all of his medicines and how to speak bluntly to doctors so that they heard me. I knew how to hold Hugo during lab draws so he wouldn’t thrash and dislodge the needle. I kissed him through his tears. I focused my love like an aura around him, a white light, a shield. I sang him songs. I turned my fingers into spiders, spiders into raindrops. I, pregnant, back wrenching, carried him up and down stairs because he couldn’t yet walk. I listened to his physical therapist like her disciple. By then, I knew there were plenty of worse things for children and their parents, things that I’d witnessed from Hugo’s room in the pediatric intensive care unit, things I read about in the news. But I held those things apart from myself and my family in the same way I used to hear stories about sickness in the days before I myself was a mother of a sick child: How sad, I’d think, how lucky that’s not me.
Jordan pounded on Hugo until the paramedic pushed him aside and scooped him up. The pajamas Hugo was wearing, a matching set with a fox face that I particularly loved, had ridden up, exposing his distended belly. “What’s wrong with his stomach?” the EMT asked as he rushed out the door. “Kidney disease,” my husband and I both shouted back.
I watched from the other side of the window as my husband flailed on the street, begging, being restrained by firemen. I saw the families in our old Brooklyn neighborhood gathering on the sidewalk, hands over mouths, surely thinking, oh. Thinking, how lucky that’s not me.
The timeline jumps. I must have been picking up Hugo’s twin Juliet from her crib, because when I went outside, barefoot in December, with my daughter on my hip, looking for the ambulance that held my son, I found only neighbors standing and pointing. It didn’t register that they were pointing at me until one of them asked if we wanted a ride to the hospital. He drove us, my daughter quiet on my lap in the front passenger seat because I couldn’t let her go, not even for ten blocks, not even to put her in her car seat. I remember her pajamas too, green flowers with bubblegum pink trim, which I would never allow her to wear again.
Unfolding in the hospital triage room: the crisis of a young heart and lungs that have stopped, the quick, jumpy work of resuscitation and intubation. Doctors and nurses and techs huddled. Hugo wore only a diaper now, his pajama pants in my sweaty hands, the top lost forever. A friend appeared like a hallucination, and I handed her my daughter. I was watching, but unwatching. My father-in-law and his wife arrived and took me outside for air, and I did not smoke a cigarette. “Aspiration,” a young doctor said as I memorized him – slight build, rectangular glasses, the way his hospital badge hung from a blue cord around his neck. “Possible aspiration,” he corrected. Because no one knew what had happened to my son that night in his crib. Not then, not later, not even after the transfer to the Manhattan hospital where his nephrology and hepatology specialists had seen him in clinic that very day.
Hugo’s ventilator breathed for him. I sat next to his bed and went forward in time. I read aloud: The Witch of Blackberry Pond, Peter Pan, Stuart Little. I held his swollen hand, kissed the veins that had been bruised from dozens of blood draws. I screamed for the nurses when Hugo opened his eyes and every one of the monitors in the room exploded. I shook and wept when they told me it was a seizure. How stupid I had been to curse his kidneys, to lament the bad luck of a rare disease. The raincloud that promised clinic visits and gross motor delays and transplant had suddenly sharpened into a guillotine. Four minutes without oxygen was too long. My daughter was at home, trying to feed peas to pictures of her twin brother. The baby inside me turned somersaults. I couldn’t read anymore. I couldn’t speak. It would never end.
And then it did. After nineteen days on life support, the breathing tube came out. Hugo woke up. It took four dumbstruck days for him to focus his eyes and recognize me and remember how much he loved Goodnight Moon and blueberries and those rainbow stacking rings and nineties hip-hop and peek-a-boo. But he did. He had a feeding tube for nourishment while his throat healed. He sat up. He made sounds. He laughed. We took him home. His red medicine bottles multiplied until there were fifteen snaking around my kitchen counter. Physical therapy went from one day a week to five. But he lived. He started again. We all did.
I think about that night often–when Hugo charges at me, beaming, as soon as he spots me in the preschool pick-up line; when he eats a muffin fresh out of the oven; when he tells the phlebotomist which arm she should use to draw his labs; when he’s playing trains with his little brother; when his little brother turns nineteen months, three weeks and four days old; when the doctor looks worried; when Hugo doesn’t want to get out of bed; when he finally masters his scooter; when we’re in the ER because he’s vomiting; when I see a little boy in a wheelchair; when I see a teenager with a tracheostomy, feeding himself through his g-tube; when Hugo masters another puzzle. Good and bad, easy and difficult, it doesn’t matter – any moment can creep up and seize me around the throat. Remember, it says, that time it happened to you?
In my memory I stood outside the hospital smoking a cigarette, while everything unfolded in the building behind me. I understand now that I was on the sharp precipice of something, of some new life. I understand too, that the cigarette is a trick of perspective. In this memory, I am still the before me, the me who has not leapt, the me who doesn’t know, the me who still thinks herself unlucky.
But now I know better. Now I understand.
Laura Leffler is a writer and art historian. Her work has appeared in Art Journal, Art Papers, College Association Review of Books, Connotation Press, Manifest-Station, Motherwell, Parent.co, and Rosebud Magazine, among others. She is in the final stages of editing her first novel, THE BIG WANT, a glimpse into the ugly underbelly of the New York art world. She lives in Los Angeles with her husband and three children.