My late daughter’s daily CF routines grew quieter as she became a teen

My late daughter, Jasmine, turned 13 in the spring of 2005, and sometimes, when she walked through the door after school, I got a flash of the little girl she used to be.

After she was diagnosed with cystic fibrosis (CF) in 1994, I thought about the future in fragments, always bracing for the next appointment, cough, or hurdle. There were days when it felt like her health was the axis around which our whole world spun. But as I sat at the kitchen table with 13-year-old Jasmine, watching her toss her backpack onto the chair and tell me about her day, I realized how much had changed. She wasn’t just managing CF; she was thriving.

Our mornings still started with routines, but they were looser, and Jasmine was very much in the driver’s seat. She would set her own alarm, usually a few minutes earlier than she needed to, just so she could wake up slowly and see how her lungs felt. I’d wander into the kitchen to make coffee and find her already at the counter, refilling her pill organizer for the week. She counted out the enzymes and vitamins with practiced fingers, sometimes humming along to whatever song was stuck in her head. There was confidence in her movements that I never imagined in those early years, back when she would look at me to double-check every step.

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Breakfast was often a quiet affair, both of us still shaking off sleep. Jasmine liked her eggs scrambled and her toast almost burnt. She had perfected the art of swallowing her handful of morning pills in one go while on the way to the car. If she noticed me watching, she’d make a show of it, grinning as she gulped down a mouthful of water.

The bronchial drainage machine was still a part of our lives, a low hum in the background that shook her and the whole house. By this point, Jasmine mostly managed it herself. The cartoons we used to watch had been replaced by music, her playlist drifting through the hallway while she did her treatments. I missed those mornings from her childhood, but there was something wonderful about hearing her sing along, her voice unselfconscious and strong.

Getting ready for school used to be a mad dash. But at 13, Jasmine had everything organized the night before. She packed her backpack with books and snacks and tucked her lunch into the fridge with a note reminding her to grab it before she left. She insisted on making her own lunch most days, usually something quick and simple, but always with a little extra packed in case she got hungry. There was a salt shaker in her bag, along with her clearly labeled nebulizers and enzymes for the school nurse. When she climbed out of the car with a wave and a quick “Love you,” I got a glimpse of the independence she had worked so hard to earn.

Not just a girl with CF

Of course, there were still difficult days. CF had not disappeared. There were nights when Jasmine coughed so hard it shook her bed, and I would go sit beside her, counting her breaths until she fell back asleep. Sometimes a cold would turn into a week of extra treatments, spirometer use, and phone calls with her doctor.

The difference was that those moments didn’t define our lives the way they used to. We had a foundation, a routine that gave us something to hold on to when things got tough. Jasmine knew her body better than anyone and had learned to speak up for herself at appointments and with her teachers and friends. I was proud of how she advocated for what she needed.

What made me happiest, though, was seeing Jasmine accomplish things that had nothing to do with CF. She made the soccer team that year, something she had always wanted. The first time I saw her running across the field, hair flying and cheeks flushed, I felt a flood of relief. She attended sleepovers and school dances, and spent hours on the phone with her friends, laughing about things I will never fully understand. Her world had stretched beyond her diagnosis, and it was the most ordinary, extraordinary thing I could have hoped for.

We kept our routines, but they were quieter now, woven into the background of our days. Jasmine was happy and healthy, but also declining. For the first time, I looked at her and saw not just a girl with CF, but a teenager with dreams, friends, and a life that was hers to shape. All those routines we built out of necessity had turned into something else entirely: space for Jasmine to be herself, and for both of us to simply live.

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.