The official label came not long after, from doctors at the Hospital for Sick Children in Toronto, Ontario, where I would spend the next several weeks being evaluated, to my mother’s great distress. Tests revealed that, yes, I did have high sodium content in my sweat, one of the top indicators of cystic fibrosis in the 1970s. My family history was another tipoff; my father’s younger brother, Kay, had died of the disease at age 12. (Later in life, genetic testing that wasn't available when I was a child revealed that I have only one copy of the dreaded delta-F508 gene mutation, instead of the two my uncle almost certainly had. I also have a mutation called the R117H, and this combination can cause widely varying degrees of CF manifestation.)

In the hospital I rejected the prescribed pablum, despite my mother marching from the parents’ quarters several times a night to feed me. The doctors’ diagnosis was spot-on, and they did everything in their power to save me, but back then hospitals just didn’t have the excellent resources they do today for kids with CF. I continued growing smaller and paler each day.

So one crisp, sunny spring morning, my mother bundled me up and carried me out for good, threats from my doctor ringing in her ears: “If you don’t bring that baby back for a check-up soon, I’ll send child services!”

Looking back, it was definitely a risky thing to have done, and it’s certainly not something I’d advise any other parent of a CF baby to do. But this was the 1970s, and the simple reality is that there really wasn’t much they could do for a wheezing newborn who was refusing her formula.

Back home in Sudbury, Ontario, Mom devised various watery concoctions of mashed brown rice, avocado, bananas, and lentils based on Diet for a Small Planet readings. I gobbled them up, gained weight, and, for whatever reason, lost the cough. Several months later, we visited my doctor, who was immensely relieved. And so began Mom’s and my long quest together: my good health, our eternal Holy Grail.

“You don’t have cystic fibrosis,” she would say with a dismissive wave as I coughed and wheezed my way through a happy, active childhood. “It’s just allergies.”

Because she was Mom and knew everything, I believed her and ran full-tilt through my days, swinging from trees in the summer and winning cross-country skiing races in the winter, stopping only to pop antihistamines, blow my nose, or take a much-needed hit of my rescue puffer.

But despite Mom’s seeming bravado, there was a crack in the fortress; she monitored my symptoms with the vigilance of a soldier on night watch, constantly alert for the enemy. She kept a watchful eye on my bathroom habits, rushing in to ensure I was absorbing my food. Each night, she’d press her ear to my chest to ensure I hadn’t developed a serious rattle.