Enjoying life amid the noise and rules of cystic fibrosis

I suspect that many people think living with a chronic illness means that all of your days are filled with drama, such as emergencies, hospitalizations, and constant danger. But that wasn’t how it was for me and my late daughter, Jasmine, who had cystic fibrosis (CF) and passed away at the age of 27. Our lives mostly happened between those moments of hardship.

For us, life could be found in Thursday afternoons, late-night snack runs, and the hours she spent attempting to color on the living room floor while her bronchial drainage machine shook her all over the place, making it nearly impossible for her to stay within the lines.

At 4, Jasmine was a little girl with a voice that always surprised people — demanding and bossy in the best way. If you’d met her, you might not have noticed anything was different at all, aside from the bag I used to haul everywhere, packed to the brim with pancreatic enzymes, a compressor, an air hose, baby wipes, and nebulizer cups. She called it her “adventure pack” and used to decorate it with dinosaur stickers.

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In the mornings, we’d do our rituals. I’d wake her gently, or she would wake me abruptly. She’d wrinkle her nose at the taste of her medicine, then gulp it down quickly. We’d sit together in a patch of sun in the kitchen. She would pick out a crayon to start on another drawing — her version of a castle, or a dog that looked suspiciously like a potato. I’d sip coffee, watching her shoulders move beneath her pajamas, measuring the work of each breath.

Some days, I would have to rearrange everything — school, work shifts, plans with friends — because Jasmine would wake up coughing or would be too tired to walk across the room without stopping. If she needed a bronchial drainage treatment, I tried to make it a game, timing her breaths, counting who could sit still the longest (she usually won). There were days I would hear concern in her voice when she told me what the other kids at school did while she stayed home. Those days were a constant reminder that she had CF, but I’d always take her to her favorite burger place with a clown mascot.

Afterward, she would be tired and sometimes cranky, and often just quiet. Those were the moments when our world shrank. The hospital was a part of our life, but not the main character. We’d go for checkups, blood tests, and spirometry tests on the few nights when a cold turned ugly. Every nurse on the floor knew Jasmine’s favorite color and which flavor of ice pop she liked. I’d pack a deck of cards for those stays, and we would play endless games of Slamwich. She was very fast and was able to slap my hand before I could even process what had happened.

If there’s a lesson in this, I think it’s that normal is whatever you get used to. Our world was shaped by routines, setbacks, and tiny joys, such as the good news that she could come home after two weeks in the hospital. There were moments I wished Jasmine’s life didn’t have to bend around all these rules and disruptions. But most nights, when I tucked her in and heard her breathing normally, I was simply grateful for another day together. Not every story needs a big ending. Sometimes, it’s enough to notice the little victories, such as mornings with no coughing, a drawing taped to the fridge, or the feeling of her small hand in mine while walking around town.

CF changes everything, but it never took away who Jasmine was. And as long as I had that, as long as she woke up every morning with that stubborn grin, I figured we were doing more than just surviving. We were still finding life inside all the noise and rules the world had given us. And that was enough.

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.