My late daughter’s joy in life taught me not to focus only on the bad stuff
For Jasmine, even doing her CF treatments was an adventure
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Cystic fibrosis (CF) doesn’t take breaks, but my late daughter, Jasmine, would have none of that. Even as a child, she was a pro at fighting this rare, genetic illness. Children are so much more resilient than we realize. Her joy in life taught me not to focus only on the bad stuff, even when it felt all-consuming.
One day, when Jasmine was 5 years old, the sun was just starting to peek over the backyard when she bounced out of bed, her excitement spilling over. Some mornings, she felt like she could take on the world, her little heart thumping as if it were challenging everything around her to keep up. It was definitely one of those mornings.
I was already at the kitchen counter sorting through her morning medications and getting her nebulizer ready. Jasmine came to the kitchen and tried to bargain with me. “I’ll take all of my meds if you tell me a story,” she negotiated. I couldn’t help but smile as I sat next to her with a book.
I turned on the nebulizer, and it hummed and hissed as I placed the mask over her small face. Jasmine used to pretend that she was a dragon, puffing mist into the air and hissing in tune with her nebulizer while her bronchial drainage machine had her shaking all over the place. I watched her make silly faces in the window’s reflection, turning the ordinary into the extraordinary.
The nebulizer treatments took a while, but they had to be done three times a day — sometimes more during seasonal illnesses. But Jasmine filled every second with giggles and questions, or just made weird noises because of the bronchial drainage machine. She was curious about lost cities, real dragons, and those magical places where kids didn’t have to think about medicine or nebulizer treatments. I responded to each question, spinning stories that made the kitchen feel like a gateway to adventures beyond anything we could see.
‘Not today’
On that day, once she wrapped up her treatments and swallowed the last pill, Jasmine jumped off her chair, placing her boots on the wrong feet, and clutched the map she’d drawn the night before like it was a treasure map. Without waiting for me, she ran out the back door, leaving me scrambling to keep up.
The grass was still damp with dew, sparkling as she charted her course. “Today is a treasure hunt!” she shouted, waving her map around. “But we have to be careful. The Cough Monster is hiding, and he wants to steal our treasure!” She handed me the map, and I couldn’t help but smile at her crooked lines and the big “X” next to the old oak tree, plus the slightly shaky warning that read, “Beware. He is tricky.”
I played along, tiptoeing through the yard, ducking behind bushes as if we were explorers in a wild land. Every now and then, Jasmine would pause, a little cough shaking her, and I could see her struggling to catch her breath and take a hit from her rescue inhaler. But she never let it slow her down for long. She’d straighten up, shake her head, say, “Not today,” and carry on.
“I’m winning!” she announced after one of those pauses. “The Cough Monster can’t catch me!” Eventually, we reached the oak tree, with Jasmine leading the charge. She started digging into the soft earth, laughter ringing out across the yard. Finally, she found the treasure, a scratched-up toy car she had stashed away days before. She held it up triumphantly, and I gave her a high-five, beaming with pride.
Jasmine asked me if she would ever have to fight the Cough Monster, a hint of doubt in her voice. I said, “You’ll always be tougher than he is. And you’ll never have to fight him alone.” Her smile returned, the doubt fading like morning mist, replaced by that fierce determination I knew so well.
Jasmine said, “Good, because I’ve got tons more adventures planned. The Cough Monster better keep up!”
For a few moments, we just sat there, soaking in the morning and letting the sun warm us. Sure, there would be more challenges ahead: more coughs, treatments, and tough days. But when caring for a child with CF, it’s important to live fully in those few normal moments. The moments when she could just be a normal, happy child, and I could just be a normal, happy dad.
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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