My late daughter lived life with cystic fibrosis on her own terms

When my daughtr, Jasmine, turned 14, something subtle and remarkable happened in our home. It wasn’t that her cystic fibrosis (CF) disappeared. It never did, of course, but its presence faded, no longer the ever-present shadow it had once been. Our routines, which in the early years felt so heavy and all-consuming, became so second nature that, on some days, I would almost forget why we started them in the first place.

By then, Jasmine had taken over nearly all of her medical care. She was always organized, and every Sunday evening she would spread her pill organizer, bottles, and notepads across the kitchen table. I used to do that for her, counting out pancreatic enzymes and vitamins, but she wanted to do it herself. She would line up every dose for the week, double-checking each compartment. Sometimes I would watch from the doorway, remembering the little girl who once needed help with every step, and marvel at how capable she had become.

Her medication list was always up to date, usually written in her neat handwriting and taped to the fridge. She checked it each morning before school, sometimes with a yawn and sometimes with a playful eye roll if I reminded her. She would check the times for bronchial drainage treatments and her nebulizer medications, and there was always a fresh box of supplies in her closet, waiting for her whenever she needed them. In fact, she was often the one who let me know when we were running low on something. It was her way of taking ownership, of making sure her illness never caught us unprepared.

There were times when the days felt so normal that CF slipped out of my mind altogether. Jasmine would come home from soccer practice and launch into a story about her day. Or she would head to a friend’s house after school, texting me that she was safe. She laughed easily, her joy so contagious that it filled every corner of our home. She spent hours on the phone with friends, made endless playlists, and would argue for an extra 10 minutes of screen time like any other teenager. It was in those moments, when the house was buzzing with her energy, that I would sometimes forget she was living with something so serious.

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Of course, there were reminders. Some nights, when the house was still and I was half asleep, I would hear her cough echo down the hallway and feel that old ache in my chest. Or she would stumble into the kitchen late, rubbing her eyes and asking if it was time for her next treatment. On those days, I was reminded that CF was still there, waiting in the background. But it was not the same as before. It no longer felt like the center of our world. It was just one more thing to manage, like homework or soccer practice or remembering to call her grandmother.

Jasmine was determined to be in charge of her own body. She spoke with her doctors confidently, explained her routines to the school nurse, and never hesitated to tell her friends what she needed. I still hovered in the background, making sure that the pill bottles were full and appointments were on the calendar, but she was usually ahead of me. She took pride in her independence, and I learned to trust her with it.

I would often find her in her room singing along softly to her favorite songs while her treatments ran. There was peace in those moments, a sense that this was simply a part of her day. We did not tiptoe around her illness, nor did we let it dominate our conversations. CF was just another thread in the fabric of our lives, always present, but never the whole story.

There were still setbacks. Sometimes a cold would spiral into extra treatments and rearranged plans, or a missed dose would mean a late night of double-checking that everything was on track. But those moments never erased the joy and fullness of Jasmine’s life. She lived with courage and grace, and she taught me that normal was not about living without challenges, but about letting everything else matter just as much.

Jasmine passed away in 2019 at age 27, and the ache of her absence never truly leaves. When I look back now, I do not dwell on the hard days. Instead, I remember the sound of her laughter, the light in her eyes when she insisted on doing things herself, and the countless ordinary days when CF was just a small part of a much bigger, more beautiful story. Jasmine made her life her own, and she filled every day with stubborn hope, joy, and love. That is the memory I will always carry with me.

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.