The daily routines that cystic fibrosis forced on my daughter and me
Jasmine's disease took her from me, but it couldn't touch the bond we shared
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Life at home never really went back to normal after Jasmine’s last hospital stay. She was 16 and wise beyond her years in ways that only kids who’ve spent too much time in hospitals can be. Every day was a balancing act for me, between being her parent and being her caregiver.
The house was quiet except for the steady background noise of machines and the routines that cystic fibrosis forced on both of us.
Mornings always started early. I’d wake her up gently, knowing how much she hated it, and set up the bronchial drainage machine in the living room. The vest would inflate with a low whir, and Jasmine would settle in, eyes half closed, the machine thumping against her chest to help loosen the mucus in her lungs. She’d usually have a book on her lap or her phone, or sometimes she’d just sit quietly, lost in her thoughts. I’d try to make her laugh, but some mornings she was just too tired.
The routines that took a lot out of her
After that came the nebulizer treatments. I became an expert at prepping the medication, pouring it into the chamber and attaching the mask. She was a pro at this on her own, but mornings are when I felt the most needed. Jasmine would pull her knees up to her chest, breathing in the medicated mist, her face hidden behind plastic and vapor and the hissing noise it made. She’d gotten used to it over the years, but I could see the toll it took. It left her feeling shaky and a little drained, but she never complained. She knew just like I did that these treatments were what kept her going.
Breakfast was always a production. Every meal meant counting out pancreatic enzymes, making sure she swallowed just the right number before eating. Without them, her body couldn’t pull the nutrients from her food, and she’d start losing weight again. I watched her closely, keeping track of every pill and every calorie. It was a constant worry, but Jasmine took it in stride, popping the enzymes like it was no big deal.
School was hit or miss. Some weeks she’d be there every day, trying to fit in, laughing with friends, acting like any other teenager. Other weeks were lost to sickness or doctor appointments. Her teachers tried to help, sending homework home or letting her catch up online, but she always felt behind. I wanted her to have a normal life, but cystic fibrosis didn’t care about normal. It pulled her out of class and away from the things she loved, one infection at a time.
The hospital visits only got more frequent as she got older. A cough that lingered, a fever that wouldn’t break, and suddenly we’d be packing bags for another stay. The nurses knew us by name. Jasmine would joke about having a “favorite” IV pole, trying to make me smile even when I could see how much she hated being there. The bronchial drainage machine and nebulizer followed us no matter where we were. The doctors would talk about new medications, about managing her symptoms, but every visit seemed to take a little more out of her.
Home was filled with medical supplies. The closet was packed with boxes of sterile tubing and replacement masks, and the fridge was covered in charts and schedules. I tried to give her some space, some sense of independence, but we both knew how fragile everything was. Friends came over less often, unsure of what to say or do, but Jasmine never blamed them. She understood.
The routines that made life easier
Still, there were good days. When she felt strong, we’d go out for drives, windows down, music up. She loved the wind in her hair, the feeling of freedom, even if it only lasted an hour. We watched movies together, played board games, and sometimes just sat on the porch, talking about everything and nothing. She had a wicked sense of humor.
As the months passed, the hospital visits blurred together. Treatments got longer, and Jasmine got quieter. She was tired, so tired, but she kept fighting. I saw how hard she tried to hold on to the little pieces of normal life, how she stayed strong even when it hurt.
Jasmine’s fight ended in 2019. The grief was crushing, but I hold on to the memory of her courage, her warmth, and her laughter.
Jasmine’s life was a testament to strength and love, and even though cystic fibrosis took her from me, it could never touch the bond we shared. Routines are what made life easier for us and why I bring them up in every column. If you have no routine, chaos will follow and make things more difficult to endure.
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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