Living with the ever-present grief of losing a child to cystic fibrosis
People talk about how time heals, but for me, the pain is as sharp as ever
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Every morning used to start the same way. My late daughter, Jasmine, would shuffle into the kitchen with wild-looking hair, rub the sleep from her eyes, and ask for applesauce with cinnamon.
Before she could eat, though, she’d have to do her cystic fibrosis treatment regimen, which consisted of pancreatic enzymes, inhalers, vitamins, a nebulizer, and a bronchial drainage machine. She did all of this while sitting on the couch, watching her favorite cartoons. The mornings were noisy back then, full of medicine bottles clinking, machines whirring, and laughter echoing down the hallway. It was chaos I never thought I’d miss.
Today, everything is quiet. The applesauce sits untouched. The cinnamon jar lasts forever. The routines that once anchored my mornings feel lost, because without her, the day doesn’t feel like it ever really begins.
It’s been exactly seven years since Jasmine passed away in April 2019. I didn’t think I’d survive that first week without her, let alone several years. But here I am in 2026, somehow still putting one foot in front of the other. People talk about how time heals, but I still feel torn apart. The pain has changed, but it’s still as sharp as ever. I still sometimes pick up my phone to call her before remembering that she’ll never answer.
Getting older hasn’t made things easier for me. If anything, it just makes them stranger. My memory isn’t what it used to be, and I’ll forget things like appointments, people’s names, and even why I walked into a room. But I’ll never forget Jasmine. Her absence is the one thing that never slips my mind.
The spaces left behind
Yet, there are also moments, brief and cruel, when I almost forget she is gone. I’ll hear a song she loved or see something online I know would make her laugh and I’ll start to call her. The realization stops me cold every time. I can’t call her. I never can. The world has moved on, but I’m caught between remembering too much and not enough.
So much of my life was built around her health. Every day was shaped by cystic fibrosis medications in the morning, bronchial drainage before school, all the pancreatic enzymes she needed for each meal, the checklists, and the alarms on my phone to keep track of everything. Jasmine brought so much life into those routines, even when they were hard. Now those routines are gone, and my heart feels emptier than I ever imagined possible.
People tell me to remember the good times and to celebrate her life. But grief isn’t just sadness; it’s also regret, longing, guilt, and so many questions I never got to ask her. It’s the weight of days that don’t move forward, no matter how many years pass.
Sometimes I dream about Jasmine. In those dreams, she is healthy and strong, running through the yard without a care. She’ll laugh, and suddenly, I’m back in those mornings before the world changed. When I wake up, the grief is a little lighter, and I remember how lucky I was to be her dad. That is what I hold on to, even as the memories fade around the edges. I was, and always will be, her dad.
Some days I talk to her and tell her about my day. To this day, I still say happy birthday and tell her how much I miss her. I can see her eyes rolling at my jokes. These conversations are one-sided, but they help. They keep her close, even as the world insists on moving forward.
Life without Jasmine is quieter, emptier, and lonelier than I ever could’ve imagined it would be. In the spaces she left behind, I search for meaning. I keep her memory alive in small ways — the cinnamon jar on the shelf, for example.
Today, I am in a loving relationship and have two wonderful step-children who fill my days with love and craziness. I’m still learning how to live without Jasmine, and perhaps always will be. But through it all, I will always be thankful for the time I had with her.
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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