We'd barely unpacked our moving boxes when 9/11 happened. The gloom that descended over the city hit Ellen and me in different ways. True to form, Ellen went into no-nonsense mode, volunteering for the Red Cross in her free time, driving a van around Manhattan, shuttling supplies and first responders. I, on the other hand, burrowed inward. In an effort to keep the noise out, I doubled down on my usual routine, keeping to my friends, my books and my barhopping with a vengeance, even as my 35-year-old wife grew increasingly impatient with me. The event that cratered lower Manhattan had blasted her into the next phase. She wanted a baby. She wanted me to grow up. She'd pace the apartment, tapping her foot in a kind of Morse code.
When will you change? When will you change?
But I was fond of my old self. He anchored me when I heard the distant keening of bagpipes, music from the funerals of fallen firemen and police officers. He stood next to me as I eyed the windows of markets and theaters, their panes shrouded with photos of the missing. Even though I hadn't personally known any of the victims, I was as numb as my eight million fellow New Yorkers.
At least once a week, my friend Dave, an aspiring writer, would call and plead with me to meet up near NYU. "Dude, hang with me in the city," he'd say. I'd barter with Ellen—a night out for laundry duty—and she'd relent, rolling her eyes. I'd hop on the F train, getting off at the West Fourth Street stop, just down the block from the nightclub. Dave would meet me inside and wave me over to the bar, where we'd swirl our tumblers of Scotch and chain-smoke Marlboro Reds. The conversation usually flowed in one direction—his—but I didn't mind. He reflected back something I needed to see: a boozy sense that I could live indefinitely in the moment. As the evening played out in a sodden haze, house music blaring from the club's stereo, I'd dance drunkenly by myself while he'd flirt with blonde undergraduates in leather jackets, their bangs spiked vertical. My cell phone was usually turned off so any spousal interference would bounce to voice mail. Later, after midnight, I'd slink back to our darkened apartment and sneak into bed, Ellen's irritation evident as she shrugged me away when I tried to spoon. She wouldn't say a word, but her body's message would radiate out like sonar.
When will you change? When will you change?
Next: The moment that transformed his life
During that lengthy hospitalization, I felt cut off from all that had sustained me in my pre-Owen life, but especially from the person I felt entitled to be, that fun-seeking guy who gadded about New York. Virtually overnight I was thrown into a world of catheters and blood draws, experimental surgeries and brewing infections, hushed conversations with doctors of all stripes. Children with Owen's severe form of the disease rarely lived to their second birthday. My wife and I traded night shifts at our baby's bedside, slumped in lounge chairs, lulled into a stupor by the hospital's noises but unable to sleep. We endured weeks of further tests, frequent trips to the operating room and Owen's dangerous weight losses and suddenly plummeting oxygen levels.
One morning Ellen gently woke me in our son's hospital room after I'd spent the night there. Like an old married couple, we'd fallen into the habit of bringing each other breakfast, shoring up our listless spirits. As Ellen handed me a bagel from a paper sack, Owen began to wheeze in his bed. A mucus plug had lodged in his airway and was strangling him. The monitor shrieked as his oxygen saturation plunged, and then his heart rate: 60...40...10. He was crashing in front of us. I felt a twinge of nausea as I reached over his headboard to push the Code Blue button. In less than 30 seconds the room filled with doctors, nurses, respiratory therapists—none of whom was clear on what to do. A vortex of activity; alarms and shouts and hands at my elbow, trying to pull me away. A couple of residents trailed stethoscopes across Owen's chest, then stepped back to pronounce that there were "diminished breath sounds in his right lung."
As the confusion peaked, I grabbed the nozzle for Owen's cough-assist machine and sealed the mask against his face, while Ellen got ready to suction the sputum. We kept repeating the rhythm—one-two-three, suction, one-two-three, suction—until his oxygen levels had popped back into the normal range. The residents cheered, and our eyes locked, relieved, as though we were two basketball players who had instinctively passed to each other on the court, dribbling by the blunders of teammates to sink the Hail Mary shot.
Later, as we hovered over Owen's bed, anxiously watching each rise and fall of his diaphragm, I looked up at my wife. She was studying me, shoulders taut, eyes steely behind tortoiseshell frames, a wing of dark hair across her forehead.
"What?" I asked.
"You know it will be like this from now on," she said quietly. "Every day a minefield. There's no going back."
I ducked my chin and nodded, my whole being coiled around her words.
Gradually, as Owen stabilized, I began to comprehend—to really take in—the gravity of the situation. This was not the parenthood I'd bargained for. I'd dreamed a gauzy dream made up of Yankee games and camping trips and bicycles with training wheels, and now I was stewing in a broth of resentment and exhaustion. And that was without factoring in—because I had no way of knowing—how much more challenging the years ahead would be once Owen came home. A bevy of life-support machines. A new sleep routine, eyes half open and ears cocked for the inevitable alarm. The terrifying moments, two of them, when I saw my child rigid and blue-faced on his bed, his monitors wailing and etching out a flat line, and knew that the decisions I'd make in the next 15 seconds would determine whether he lived or died.
How do you describe that feeling to a friend, legs all rubbery and the air knocked out of you? I'd dropped down a wormhole into a weirdly distorted dimension where I was unable to locate my coordinates. There was no longer the option of whether to change. I had. Life had.
Next: How he discovered what was really important
When the topic of expanding our family inevitably surfaced, Ellen and I mulled the risks. We knew we wanted more children, but the chances of our second child also having SMA were high: The odds were only 75 percent that we'd evade the disease. Ellen was gung-ho anyway—only later would I realize how deeply she craved a typical mothering experience—but I felt fearful about adding to the responsibilities I already had, not to mention about the idea of bringing into the world another child who would face Owen's challenges. A dwindling part of me remained nostalgic for the old patterns, the well-grooved paths between work and home, bars and cafés and restaurants, my only care in the world the number of dollar bills in my pocket. Always two steps ahead, Ellen explored our medical options with geneticists, calling around from physician to physician, jotting notes, glowering at me.
And so it came to pass that we embarked on a single round of IVF, producing embryos that nestled in petri dishes as a researcher biopsied a single cell from each and analyzed its DNA, a technique called preimplantation genetic diagnosis. Only SMA-free embryos were candidates for the womb. Weeks later we arranged for a critical-care nurse to stay with Owen while we taxied into Manhattan for a sonogram. In her ob-gyn's examination room, my wife splayed her legs, a lava-lamp pattern on the screen as the probe swiveled inside her, and then two forms blurred into view, bent like eggplants around two little pulses. Two heart buds that made my own heart swell and tower like an oak.
To this day, SMA shapes not only the life of 11-year-old Owen—who requires breathing and feeding tubes and cannot speak, although his brain is still in perfect shape—but also the cadences of our entire family. Our 9-year-old twins, Peter and Nathaniel, often struggle with the myriad ways their older brother's medical condition intrudes on school and play. Because of Owen's fragility, we can't take vacations: He requires a fully equipped ambulance for any transport. Our friends tend to see us only when they come over for one of our leisurely four-course dinner parties.
But I'm grateful for the beguiling, unbidden moments of ease, of coziness, that sneak up on me, lifting my mood. Ellen and I still read avidly, devouring novels and works of history, biography and science. We talk politics, as we have every day for more than two decades. (By virtue of osmosis, our twins could name the candidates in the 2013 Democratic runoff election for New York City's public advocate.) She cycles and plays tennis. I lift weights—hammer curls and dumbbell presses. And Facebook and Twitter keep us connected to the folks who have remained steadily in our corner since Owen's early hospitalization, even if we rarely see them.
Thanks to radical improvements in pulmonary care, Owen thrives with the dedicated support of nurses and therapists. Although nonverbal, using the 1 percent normal motor neuron capability he has and propped just so in his bed, he can communicate by tracing a finger across his iPad's Doodle Buddy app. He manages (mostly) to ace his home instructor's quizzes, his responses looped in a distinctive cursive. He feigns sleep to avoid his fractions homework—clearly he's inherited his parents' math phobia—but relishes fantasy stories. Already he's polished off the Harry Potter canon and has graduated to The Lord of the Rings, scanning each page slowly and deliberately. My wife and I fret about his interior life, though, as he's keenly aware that his brothers race and wrestle throughout our apartment, attend a regular school and go on field trips to Carnegie Hall and Central Park, experiences that are largely walled off to him. On occasion he has expressed a profound melancholy—once scribbling an existentialist "Why?" on his iPad—but together we all do the best we can to bring the world to him.
One evening last November, just before Thanksgiving, we gathered around the television in Owen's room, a knot of shared DNA and knock-knock jokes and bone-deep trust. Although I've never geeked out on science fiction, I've come to love Dr. Who, the long-running British cult series about the time-travel adventures of an eccentric alien and his comely, usually human companion. The pyramids of Egypt, Renaissance Venice, spaceships orbiting planets—all are the doctor's playgrounds. As a child, my wife adored the show, and she's made it her personal mission to immerse us all in its layered stories and witty repartee. Now we were preparing to watch the 50th anniversary special on BBC America. The twins had dressed up as characters, in tweed coats and bow ties with toy Sonic Screwdrivers as props, while an oversize beanbag cradled Owen and his mesh of tubes, his wrists draped across a plush blue Dr. Who blanket.
Amid the opening credits, aerial shots of London flashed onto the screen: Big Ben, Trafalgar Square, an array of bridges spanning the Thames. The twins leaned forward, pumping their fists, as Owen reclined behind them, his eyes gleaming and rapt. My wife and I sipped our wine. A warm glow suffused the room. I breathed in and out—clearheaded and soul fit—and hurled into the future, shouting over the twins one of the doctor's signature lines: "Geronimo!"
Hamilton Cain is the author of the memoir This Boy's Faith: Notes from a Southern Baptist Upbringing (2011) and was a finalist for a National Magazine Award in 2006.