Rituals and routines helped us abide by a strict CF treatment regimen

By the time my late daughter, Jasmine, had turned 11, we’d become professionals at handling cystic fibrosis (CF). In those years, our lives revolved around a schedule that most people couldn’t imagine.

CF is a genetic disease that causes the mucus in the body to become thick and sticky, which clogs the lungs, liver, nose, and sinuses. Therefore, it’s easy for bacteria to cause infections. It also blocks the pancreas and most of the digestive system, making it hard for the body to digest food and absorb nutrients. For us, this meant every single day was shaped by bronchial drainage treatments, pancreatic enzymes, various medications, and vitamins. The routines were designed out of necessity to keep Jasmine as healthy as possible.

I remember how mornings always started early. Before school, Jasmine had to do bronchial drainage treatments and use her nebulizer. She’d sit in her favorite chair while I’d help her put on her bronchial drainage vest, which helped to loosen the sticky mucus from her lungs. Sometimes she’d make weird noises, like high-pitched squeals, just for fun. It almost sounded like when someone talks into the back of a spinning fan, but much faster and louder. Meanwhile, the bronchial drainage machine would shake her like she was sitting at the epicenter of an earthquake. The house would rumble like a school bus driving down a dirt road. Those sounds will remain with me for the rest of my life.

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Jasmine would watch cartoons or talk about her plans for the day. It became a ritual, and even though it was medically related, we found ways to make it feel comforting. I figured that the more we spoke about Jasmine’s condition, the easier it would be. At 11 years old, Jasmine understood things no child should ever have to know about or deal with.

After her treatment, she’d eat breakfast, and I’d give her a handful of pancreatic enzymes. Depending on how fatty her food was, she might have to take as many as 15 of those pills to help her body digest food and receive nutrients.

Packing her lunch for school was never simple. Every meal and snack had to be high in calories and salt and include her enzymes. I’d leave notes in her lunch bag for the school nurse and make sure Jasmine knew which pills to take and when. She was such a responsible person for her age, checking off her medication chart and reminding me if I forgot a dose. It was a lot for a child, but routine gave her a sense of control.

Reminders of her strength

Yet even with all our careful planning, CF brought sudden changes. There were days when she’d wake up coughing or be short of breath, and we knew it meant another infection. Sometimes antibiotics at home were enough, but often she needed to be admitted to the hospital for IV antibiotics and more intensive care.

Hospital stays disrupted everything. She’d miss school and her friends, and I’d stay with her as much as possible, learning the routines of hospital life. I had an emergency bag in the vehicle, with her favorite books, games, stuffed animals, and some form of arts and crafts, which made it feel less scary for her. Still, there was always a worry in the background, knowing that each infection could make things harder for her lungs.

At home, the treatments never stopped. After school, there was another round of bronchial drainage treatments and more medications. Some days, Jasmine felt tired or frustrated, especially if she had to miss out on something fun because of her treatments or appointments. But most days, she powered through with a determination that amazed me. Her room was filled with reminders of her strength, such as dance trophies, art projects, and silly notes from friends who visited during hospital stays.

For someone new to CF, it might look overwhelming. Who knew in the beginning that CF would demand so much from Jasmine and me? Routines let her be a kid. She still went to dance class, had sleepovers, and played outside when she could and was able to hang out with her friends. The medical care was always there, but it didn’t define her completely.

Looking back, I see how much we all grew because of Jasmine’s illness. She faced so much more than most children her age, but she did it with courage and humor. In the end, CF took Jasmine from me and my family, but it never took the love, laughter, or strength we discovered in ourselves and in each other.

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.