Finding comfort in routine after a heartbreaking CF diagnosis

After my late daughter, Jasmine, was diagnosed with cystic fibrosis (CF) at the age of 2, the days started to run together while we figured out a shaky rhythm.

I learned the quirks of a nebulizer’s hum, the best tricks for coaxing Jasmine to take her pills — mixing crushed enzymes into applesauce worked best — and how long it took for our apartment to fill up with the scent of albuterol. I was always terrified I’d mess something up by forgetting a dose or missing a treatment.

But Jasmine never held it against me. I’d catch her watching Saturday morning cartoons with that loose nebulizer mask hanging around her neck, looking so normal I’d forget for a second that there was anything wrong.

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We had calendars everywhere: one on the fridge, one tucked in my wallet, one taped to the door by the keys. Everything had to be written down, including medications, enzyme totals, treatment times, what she’d eaten, what color her sputum was — stuff nobody else had to obsess over, it seemed. Some days, I just wanted to chuck that calendar out the window. But then I’d remember the doctor’s words about mucus, lungs, and declining numbers, and I’d force myself to write it all down, neatly and carefully.

There were good days, too, when Jasmine would finish her last breathing treatment and sprint out to the yard barefoot, her hair wild and her giggle spilling through the window. Sometimes the neighbor’s kids would shout for her from across the street, and she’d dash over to join them, clutching her little rescue inhaler like a badge of freedom. Every time I saw her run — really run — I felt that same flicker of hope the doctor had given us all those weeks ago when he told us that treatment was available.

But the fear never really left me. It could be something small — a new cough, a fever, her energy dipping halfway through the day — and my brain would kick into high gear, running through worst-case scenarios. I’d call the clinic, explain her symptoms, and listen to the nurse’s calm instructions. Sometimes we found ourselves back under those fluorescent hospital lights, with the sharp chemical smell of antiseptic in the air and the staff taping a tiny pulse oximeter to Jasmine’s finger. Every clean bill of health felt like a victory, and every return home was cause for a small celebration.

On tough nights, after Jasmine had gone to bed, I’d call my mom and spill everything, particularly my worries about work, bills, and what would happen if Jasmine got sick and I had to miss more shifts. My mom always quietly listened, never telling me to “just be positive.” “We’re in this together,” she’d say, and I believed her.

Something to hold on to

The seasons changed. Winter brought a parade of runny noses and wet coughs, but also the warmth of holidays with family: sticky hands reaching for cookies, the whir of her air compressor running in the corner while Jasmine’s grandpa read his worn-out Christmas book. Spring meant muddy shoes, more outdoor play, and the slow return of sunlight through our apartment window. I collected Jasmine’s scribbled pictures of bright yellow sunflowers, always with blue skies.

One Saturday, when Jasmine was about 3 years old, she asked if she could help with her treatments. She didn’t say it, but I knew she wanted to feel like a big kid, to have something just for herself. I showed her how to retrieve enzyme pills from the bottle, how to hold the nebulizer mask steady, and how to count slow, deep breaths. Her hands were clumsy, but she beamed at me, so proud.

“Look, Daddy,” she exclaimed, “I can do it!” That moment hit me like a gut punch. I knew she’d have to grow up fast, but I was still proud of her for doing it.

I started reaching out to the community of CF parents even more. We were strangers and pen pals, but the internet, new as it was back in the 1990s, allowed us to share stories, make promises to send old equipment, and offer advice that couldn’t be found in a pamphlet. We swapped emails and phone calls, and for the first time, it didn’t feel like we were fighting alone.

Our lives weren’t what I’d pictured when Jasmine was born, not by a long shot. But there was strength in the routine, a comfort in rituals that had once felt like heavy burdens. In our own way, we’d found something solid to hold on to, even as the rest of the world kept shifting. Jasmine, with her impossibly bright spirit, led the way. And every night, just before bed, I’d thank the stars for one more day with her laughter in our home.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.