The day I realized just how fragile life with CF really is
The doctors wore expressions indicating that something was very wrong
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When my late daughter, Jasmine, was 8 years old, she never wanted to miss a party. Even when her lungs felt heavy and her breath was short, she’d insist on putting on a T-shirt and jeans, ready for any adventure that awaited her. She loved birthday parties most of all — the balloons, the wrapping paper, the cake, and the way everyone sang a little too loud and off-key, making her laugh.
That day, she woke up coughing but was determined not to let it slow her down. She was always stubborn, bright-eyed, and ready for more than her little body could actually endure. I remember asking her if she was sure she felt up to it. She nodded with a seriousness that only children who’ve spent too much time in hospitals with adults develop.
“I want to go,” she said. “I’ll be careful.”
Things felt different this time
Having a child with cystic fibrosis meant packing her nebulizer, aerosols, and pancreatic enzymes — all carefully tucked into her bag — before heading off to the party. The house was filled with friends and family, laughter, and the smell of something sweet baking in the oven. Jasmine was swept up in the noise and the games. For a while, she seemed like every other kid.
She ran hard that afternoon, chasing her cousins around the backyard and ignoring my worried looks and reminders to slow down. She wanted to be normal, just like her cousins; she was desperate to keep up and to avoid being the “sick kid” everyone had to watch out for. I felt that old, familiar mix of pride and fear, an ache that every parent of a child with cystic fibrosis learns to live with.
Somewhere between opening the last present and the first signs of dusk, Jasmine’s breathing became labored. She stopped running and came to sit beside me, her face pale. She tried to hide it, but I could see the effort in every shallow breath, the way her chest rose and fell too quickly.
I took her inside and set up her nebulizer, trying to hide the panic I felt. I’d never seen her look or breathe the way she did that day. She looked so small, even at 8. Sitting on the couch with the mask pressed to her face and her eyes shut, she seemed fragile. When the treatment was over, she still couldn’t catch her breath. A deep, raspy sound came from her tiny body, and her lips turned faintly blue.
That’s when I knew we had to leave. We hurriedly said our goodbyes and drove straight to the hospital that Jasmine had come to know better than any playground. By then, the emergency room felt like a second home to us. The nurses recognized her right away, calling her by name, their smiles a little softer and their voices gentler. They could see something was wrong, too.
They moved quickly — oxygen mask, pulse oximeter, the hum of machines. Respiratory therapists talked in the steady background noise of a place where children fight battles most adults can’t imagine. Jasmine gripped my hand. She was scared, but she’d been here before. She knew the drill: how to breathe slowly and deeply, how to squeeze my fingers when it hurt, how to keep her eyes on me and not the IV.
That night was the first time things felt different. The doctors were more serious, their words more careful. They explained things to me, but I already understood. I’d watched other parents in that waiting room and seen the way hope flickered and faded. I stayed by Jasmine’s side, telling her stories about adventures we’d still have, islands we’d visit, and dogs we’d adopt. She listened half-asleep, her hand never leaving mine.
The doctor explained that Jasmine’s left lower lobe had collapsed due to an infection. They needed to collect sputum from Jasmine to create an antibiotic specific to her. The situation was dire, so they wanted to give her the best fighting chance. We remained in that hospital for two weeks. Jasmine’s body fought hard, but she was tired, and she didn’t bounce back as quickly as before. I watched her sleep, her chest rising and falling in that uneven rhythm.
Looking back, that day was a turning point — the day I realized how fragile everything really was. Jasmine went on to have several more years ahead of her, years filled with hospital stays, good days and bad, laughter, music, and too many enzymes. She made it to the age of 27, stubborn and shining to the end.
But I still remember that party, that drive to the hospital, the way she squeezed my hand and tried so hard to be brave. At 8 years old, she was already stronger than I’d ever be.
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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