Reflecting on my late daughter’s daily life with cystic fibrosis can be hard
Jasmine taught me how to hope, even when it felt impossible
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Mornings with my daughter, Jasmine, who passed away at 27 due to cystic fibrosis, always began quietly. She would wake up before me, her hair still wild from moving around in her sleep. I would find her sitting on the edge of her bed, feet dangling, already thinking about the day ahead. At 7, she was small for her age, but stubborn in the way only kids who have learned about hospitals too early can be.
Breakfast was a careful ritual. There were the pancreatic enzymes, of course, those little capsules she had to swallow before she could eat anything. I would line them up on the table next to her bowl of cereal, and she would sigh, but she never put up a real fight. She knew the drill. Sometimes she would hold a pill up to the light and squint at it as if searching for a secret message. I always wondered what she hoped to find.
Next came the vest. It was a clunky thing with hoses sticking out, making her look like a tiny astronaut. Depending on the frequency of the bronchial drainage machine, it shook her entire body with a determined hum. Jasmine would also hum loudly, the machine making her sound funny, like she was talking into a fan. I would listen quietly from the kitchen. It was important for her to feel normal, even though nothing about her life really was.
School was the highlight. Jasmine loved her teacher and friends, and she craved the routine of it all — the morning bell, the echoes of little voices, the smell of crayons and glue. Her backpack was always heavier than it should have been, stuffed with books, inhalers, and snacks. The school nurse kept a special drawer just for her inhalers and pancreatic enzymes.
I would take Jasmine to school and wave until she disappeared behind the front doors. While she was there, I didn’t know what was happening with her, and I couldn’t spot any subtle changes in her health. I’d quietly hope that she used her hand sanitizer when necessary, washed her hands regularly, and, if someone coughed too close to her, covered her face.
I was always relieved when she came home tired but smiling, without any weird mucus rumble in her chest or throat. Sometimes she would run straight to her room to draw endless pages of animals (her favorite mammal was the elephant).
The hardest part was the evening treatments — more enzymes and a nebulizer treatment that left a bitter taste on her lips. She never complained, not really. She would stare out the window at the fading light, lost in her own thoughts. Sometimes I would sit beside her, reading a book aloud, or we would just talk. She liked it best when I let her pick the story.
Before bed, she would ask me questions about why the sky was blue, or whether spiders really could write words, or if she would ever get to ride a horse. I responded as best I could, sometimes making things up when I didn’t know the answer. She always seemed satisfied, even when the answers were more hope than fact.
When Jasmine finally fell asleep, the house felt too quiet. I would tidy up, collecting stray crayons and forgotten socks, and pause at her doorway just to listen to her breathing. If I couldn’t hear it, I would watch to see if her chest moved up and down. I worried about the days when school would be too much, or when the vest and the pills wouldn’t be enough. I worried about the future, about every year she would have to fight a little harder.
But I also remembered her laugh, the way it would fill the room and chase away every shadow. I thought about how fiercely she loved, how bravely she faced every new day. Even on the hardest days, she somehow found magic in the ordinary: in a bowl of cereal, in a story, in a sunbeam falling across her bed.
It is hard sometimes to think back on Jasmine’s life. But when I picture her at 7, I see the courage, stubborn joy, and wild curiosity that never really left her. She taught me how to hope, even when hope felt impossible. I carry that with me every single day.
That was an average day with Jasmine — ordinary and extraordinary, tangled together in the way only love and loss can be.
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.
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