Family Guy: A Son Teaches His Father How to Grow Up
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.