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When my daughtr, Jasmine, turned 14, something subtle and remarkable happened in our home. It wasn’t that her cystic fibrosis (CF) disappeared. It never did, of course, but its presence faded, no longer the ever-present shadow it had once been. Our routines, which in the early years felt so…

Sometimes, memories are triggered by my senses — things I hear, see, smell, or touch — and before I know it, I’m spiraling down a rabbit hole of past trauma from my life with cystic fibrosis (CF). It’s fascinating how my five senses remember everything and often transport me…

Inhale. Exhale. Ah. If only it were that simple. Living with cystic fibrosis (CF) has given me a sixth sense about my breathing. I pay more attention to every breath than I do to most anything else. It’s at the forefront of my mind constantly. I don’t clock in,…

My late daughter, Jasmine, turned 13 in the spring of 2005, and sometimes, when she walked through the door after school, I got a flash of the little girl she used to be. After she was diagnosed with cystic fibrosis (CF) in 1994, I thought about the future…

Most days, the mental load begins before my feet hit the floor. The first thoughts of my day are rarely about coffee or schedules. I’m already running through a quiet checklist: medications and other treatments, upcoming appointments, symptoms, exposure risks, and more. I’m listening — not just hearing,…

I used to be the woman who could do it all. For more than 20 years — from my early 20s into my mid-40s — I worked as a nurse, initially on a cardiac telemetry unit, where I watched heart rhythms shift in real time to catch the small changes…

I used to think that I needed to wait until my health was perfect before I could do all the things I wanted to do. I’d say, “Once I get this surgery done … ,” or, “Once my lung function cooperates … ,” or, “When I feel better … ”…

Holidays used to sneak up on me. I’d barely notice the calendar flipping over to June. Maybe I’d see a sign in the grocery store or a rack of “World’s Best Dad” mugs by the checkout, but it never meant much. Father’s Day was just another Sunday. I was never…

I am a mother who has cystic fibrosis (CF). My daughter is 30, but she was 15 when my lung function started its long, uneven slide. She has spent more than half her life watching my body negotiate with CF. She has seen the hospital calls, the bad lab…

I’m just back from taking part in the Transplant Games of America, where 966 transplant recipients and living donors gathered in Denver to make history. The event saw the most organ transplant recipients and living donors gathered in one place, meaning we made the Guinness Book of World Records!…