After a difficult year, my late daughter’s 10th birthday felt like a victory

When my late daughter, Jasmine, who had cystic fibrosis, turned 10 in 2001, she had lived through a year of medical routines and hospitalizations. But there were also moments of unexpected joy.

For her birthday, she wanted a unicorn cake, so we attempted to make one together. With our hands dusted in powdered sugar, she tried to shape the head. When we were done, we could’ve entered it into a competition of cake failures, and we probably would’ve won. But she loved it.

Jasmine wore her favorite pajamas and insisted on blowing out all 10 of the candles herself, even though I could see it took a lot out of her. I knew she’d need her albuterol treatment soon afterward. But she just grinned, a little breathless yet still determined. I took pictures of that smile, trying to capture the way her eyes lit up, the tilt of her head, and the pride in her accomplishment.

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That birthday felt like a victory. We sang and laughed, and for a few hours, it was easy to pretend that things were as they should be. She opened her presents with the same excitement as always, thanking everyone and carefully saving the wrapping paper she liked best.

At the time, we had settled into a rhythm of hospitalizations, constant vigilance, and loads of bronchial drainage treatments. On good days, she’d ride her bike, with her hair flying behind her, or we’d go to the park early in the morning before it got crowded.

She made new friends at school, and was always making people laugh, even when she was tired. The days when she could go an entire afternoon without needing to rest felt like gifts. I learned to treasure them and to let her be a kid as much as possible, forgetting just for a bit about all the medicine and doctor appointments.

Cystic fibrosis caused the mucus in Jasmine’s body to be thick and sticky, which clogged her lungs and made it hard to breathe. She did daily bronchial drainage treatments to clear her lungs, but still experienced frequent lung infections that necessitated hospital stays for infusions of strong antibiotics. The disease also affected her pancreas, making it tough to digest food, so she needed enzyme pills with meals.

While her hospitalizations never got easier, they did become more familiar to her. The nurses became friends, and Jasmine knew all their names. She’d bring them drawings she’d made at home, bright pictures of cats and rainbows. Sometimes she’d give them little notes wishing them a good day.

I always kept my bag ready and my senses sharp. I learned to live in the moment more than ever, to take nothing for granted, and to memorize every laugh and stubborn look she gave me. The doctors talked about progress and setbacks, new medications, and research studies. But I had learned not to think too far ahead. I focused on today, on making the hours count.

Finding light on the hardest days

By the end of that year, life didn’t return to anything resembling “normal.” But we’d carved out a kind of peace with our circumstances. Jasmine taught me how to be brave, how to find happiness in the middle of uncertainty, and how to love every ordinary day. I didn’t know what the future would bring, but I was grateful for every day I had with her.

She had a way of making even the hardest days feel worthwhile. She would tell me stories and ask for stories in return, and we built a world together where anything was possible and every ending could be happy if we wanted it to be.

Holidays came and went. For Halloween, she wore a homemade costume and went trick-or-treating with friends who knew to take it slow. On Thanksgiving, it was just the two of us, and we baked a pie together. Christmas brought new books and a puzzle that we finished in three days. Each event was a marker, another year survived, another memory made. I tried to keep things as normal as possible, but normal always meant being ready for the next emergency, the next phone call, the next fever that might send us back to the hospital.

Jasmine never let any of it change her. She remained stubborn and sweet, full of questions and opinions, and always ready to laugh. She had a light that even the hardest days couldn’t dim. By the time she finished that year, I had realized that I wasn’t just her protector; I was her student, too. She taught me what it meant to be strong, to hope, and to keep going no matter what. I don’t know how I would’ve made it through without her courage guiding me, every single day.

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.