Adam was born on Aug. 31, 1984, in Brockville, Ont., to a 16-year-old unwed mother. For his first four weeks he seemed a healthy boy; then respiratory arrest forced an emergency ambulance ride to Hotel Dieu Hospital, in nearby Kingston. Adam spent three years there, in a crib in pediatric intensive care, surrounded by the sonar sounds of health care machines, the rush of nurses and doctors, and other ill children. A tracheostomy tube lodged in his throat connected him to a respirator. Yet with his strawberry blond hair and chipmunk cheeks, “he was a charmer,” says Nora McLernon, a registered nurse on the unit. “He’d flirt with everyone, with his eyes and grin.”
The hospital, with its beeps and hushed chatter, defined his infancy. One night Nora threw gym mats onto the unit floor, pulled Adam from his crib, and taught him to crawl. At other times he made do on his own: he grabbed the tubing at his throat and, jerking it like fishing twine, pulled his respirator close to play with the dials. Unable to speak, he communicated with gestures. “He’d put his first finger and thumb in the air and twist it—that meant he wanted the TV on,” says Nora’s husband Mike McLernon, an engineering technologist. Although he was a terror, with energy to spare, doctors at first said he’d not live past 12 months. He was nearing three when the hospital began seeking a nurse who’d mother him at home until he died (Adam’s young mum made few appearances in his life). Nora, already with three teenaged children, put the notion to Mike. “Mike said, ‘I think we have enough, but we’ll put it to a vote,’ ” Nora recalls. “Foolish man, he was outvoted four to one.” “He’ll be a rip snort,” Mike warned. But Adam could not walk or talk or eat, and Nora told Mike not to hope.
Life at the McLernons’, north of Kingston in tiny Battersea, delighted Adam. “He’d never seen a bird, an animal move, or simple things, like leaves falling,” says Nora. “When a fly landed on his finger, he giggled. All these things were new to him.” With the help of his new family Adam learned to speak and chew (he loved licking the salt from dill-pickle chips, replacing the soggy remnants in the bag). Nora and Mike and the kids, Sue, Karen and Marshal, became an inexhaustible source of fun and attention, and took turns coaching him through first steps and suctioning his trach. Adam’s time in the ICU, when he coaxed passersby to him by placing a finger to the hole in his throat and yodelling “Hi,” had left him hungry for interaction, and determined to persevere. Doctors said he’d not live a year outside hospital. Nora told Mike the same but inwardly wasn’t sure: “By then I knew Adam,” she says. “I thought, ‘Well—just watch him.’ ” Months later, back at hospital, he caught a virus; the child next to him died, but Adam lived. Months after that he received crucial heart surgery that doctors gave him a one per cent chance of surviving. Those odds, too, he beat.
His personality ripened: he sang, and, with near-perfect recall, discussed his passions incessantly, including Elvis and the films of John Wayne. Mike, who Adam called “ma’dad,” made Adam mobile, canoeing him across lakes, equipping his snowmobile with a holster for his oxygen tank, and giving him a 4 X 4 off-road vehicle. “He had no fear,” Mike says. Adam and his oxygen tank joined Beavers and took swimming lessons. The McLernons, meanwhile, formally adopted him. “We were thinking of names to give him,” Nora says. “Our other kids said it had to be a strong name”—Adam Gabriel or Adam Bartholomew—“but Adam said: ‘I am Adam Michael, because I’m like ma’dad.’ And he named himself.”
Such backbone masked bad health. Pneumonias often brought him to the brink of death. “But he liked life,” Nora says. Doctors said he’d not survive puberty; then he did. He shrugged off the pain of a scoliotic spine, worried that admitting to it might stymie visits with his beloved nieces and nephews. At 15 he learned his symptoms stemmed from a genetic disorder, but it didn’t much matter: Mike and Nora carried on loving him. “If you ever said the word burden to them, they’d have a fit,” Karen says. He got a standing ovation at high school grad, but in his 20s he slowed, preferring bed to the world. His lungs, always inelastic and stiff, hardened. Tales of local ghosts and hauntings replaced his obsession with Elvis. “He survived on grit,” says Nora, “breathing by osmosis.” Some months ago, at a Leonard Cohen show, he heard his favourite Cohen song: Closing Time, though Cohen sang Hallelujah first. Adam died on April 21, at 28.