Building a solid routine was key to caregiving for my daughter with CF

When my late daughter, Jasmine, was diagnosed with cystic fibrosis in 1994, we had appointments to remember, medications to track, and other treatments that seemed to eat up every spare moment. I remember sitting at the kitchen table surrounded by prescription bottles and sticky notes, wondering how I would keep up with it all. Back then, every day felt like a scramble, and the stress was constant.

But as the weeks went by, something shifted. We started building routines out of necessity. For me, it wasn’t about trying to become a perfect caregiver overnight. Rather, it was about survival. Without a plan, the days would slip away in a haze of missed medications and forgotten therapies. A sort of rhythm happened, and suddenly, things didn’t feel quite so impossible.

When Jasmine woke up before school, the first thing we did was administer her bronchial drainage machine and nebulizer medications, which loosened the mucus in her lungs. At first, this felt like a huge chore, but we turned it into a ritual. She would sit on the couch, wrapped in a blanket, and we’d watch a short cartoon together. The routine got her ready for the day, and for a few minutes each day, it felt almost as cozy as any other family’s morning routine.

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Breakfast came next, and with it, the first round of pancreatic enzymes before eating. We kept a weekly pill organizer on the counter that was refilled every Sunday night so that we’d never have to second-guess if she’d taken the right dose. A whiteboard in the kitchen listed every medication, and Jasmine loved checking the boxes next to each one, her own way of taking charge. It was a small thing, but it gave her a sense of control when so much felt unpredictable.

Getting out the door for school used to be a frantic affair. But eventually, the routines kept us grounded, and everything was written down and prepped the previous night. Jasmine’s lunch was packed with high-calorie snacks, a water bottle, meds for the school nurse to administer, and a salt shaker. It became possible for Jasmine to feel like just another kid heading off to school. She would wave goodbye, and for a few hours, she got to be a normal 10-year-old, more focused on her spelling test than the next treatment.

Of course, there were days when everything unraveled. Jasmine would wake up coughing, or the phone would ring with news of another appointment because her lab results were off. But having routines in place meant we had a foundation to fall back on. The structure was what helped us adapt if we needed to do an extra bronchial drainage treatment or call the school nurse to remind her about meds. The chaos was never completely gone, but it was tamed.

After school, another round of treatments happened. Sometimes, Jasmine was tired or cranky, and I was tempted to skip a step. But sticking to our routine wasn’t just about her health; it was about making the rest of life possible. The more predictable our days were, the more space there was for everything else. Jasmine still got to go to dance class, have sleepovers, and play in the backyard. Routines made her medical needs just another part of her day, not the whole story.

Routines and self-care

For me, as a caregiver, routines were a lifeline. They meant I could plan a few minutes for myself. Maybe it was over a cup of coffee while Jasmine did her homework or a quick walk around the block. Self-care wasn’t always glamorous, and sometimes it was just five minutes alone in the bathroom. But those breaks mattered.

Without routines, wanting time to do adult things would’ve been difficult. With routines, I knew Jasmine was safe and cared for, and I could recharge enough to face the next round of challenges. When she was at school, and I was off for the day and didn’t have to go to work, I could run errands, catch a movie, or even go out to eat to get some normalcy for myself.

Routines may seem boring or rigid, but they unlocked freedom. When everything had a place and a time, there was less worry about what we were forgetting or if we were falling behind. That organization made it possible for Jasmine to be with her friends and for our family to hold on to a sense of normalcy, even when things were tough.

In the end, the routines weren’t just about managing cystic fibrosis; they were about making space for childhood and self-care. They were the scaffolding that let us build a life around the hard parts, instead of being swallowed up by them.

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.