Teaching myself and my daughter the importance of rest

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 numbers, and the year transplant went from someday to now. She has seen more of my medical reality than I ever wanted her to carry — and for a long time, I worried that what she was learning from all of it was fear.

I wasn’t wrong to worry. Anxiety found her early, built quietly from years of waiting for the next crisis, the next decline, and the next call. It was happening to me, too, but I would’ve done anything to keep it from creeping into her. I couldn’t undo that by explaining my illness better. She wasn’t anxious because she misunderstood what was happening to me. She was anxious because she understood it completely, and loved me, and had no control over either fact.

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Modeling rest as something positive

What I could do, and what I started doing imperfectly over those 15 years, was choose what I modeled in between the crises. Because most of it was in between. CF isn’t an emergency most of the time. More often, it’s the ordinary, daily math of a body managing its limits, and that is where rest belongs. And I mean real rest, taken without apology, long before I added nephrology or transplant clinics to my list.

I didn’t always get this right. For years, I treated rest the way I’d been trained to: as something to minimize in front of my daughter, to time-stamp, to frame as a temporary weakness I was actively fighting my way out of. I thought I was protecting her from worry. Looking back, I think I was teaching her that stopping meant losing ground — which, for a girl already afraid of losing me, was exactly the wrong lesson.

So I started doing it differently: I began resting without narrating it as a failure. Learning to say, “My body needs this” instead of “I’m sorry, I just need a minute.” Letting her see that rest during decline, rest during transplant recovery, and rest five years post-transplant are all the same thing: maintenance, not surrender. It’s not a crisis or a countdown. It is just what this body — or what any body, really — sometimes needs.

I wanted her to know, especially given everything she’d watched, that needing rest isn’t something to fear. The crises were real and frightening, and I can’t pretend otherwise to her or to myself. But the rest in between was never the danger. It was, and still is, what made it possible for me to be here for the next ordinary Tuesday. That was the point I hoped would stay with her.

She now has her own body, limits, and life to manage. I don’t know what all she took from those years, but I hope that, somewhere underneath the fear she earned honestly, she also absorbed this: A body asking to stop is not a body failing. And that taking care of yourself physically and mentally isn’t something to be ashamed of. If that stayed with her, then the rest of it mattered, too.

I hope she rests without apologizing. I hope she learned that from me, even on the days I hadn’t fully accepted it myself yet.

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.