From the dark days of a CF diagnosis came newfound strength
What it's like when a diagnosis turns the thrill of being a new parent into fear
Sitting in that brightly lit hospital room, I was a bundle of nerves, anxiously waiting to hear what the doctor had to say about my young daughter, Jasmine. You know that feeling: The heart races, and a heavy pit churns in your stomach. When the doctor knocked on the door, I tried to muster a smile, but honestly, I was terrified of the news he might bring.
He settled onto a round stool and rolled in closer. “This can’t be good,” I thought. “Why else would he need to sit so close unless it was serious?” That’s when he delivered the news: Jasmine had cystic fibrosis (CF).
My heart sank, and I couldn’t stop the tears from flowing. At first, I didn’t fully grasp what that meant, but the weight of it felt like a ton of bricks crashing down on me.
Out of the darkness comes resilience
However, he quickly added that treatment was available. That little glimmer of hope was like a flicker of light in the midst of all that darkness. He explained that we would be getting several medications and some equipment, along with a new doctor to help guide us on this journey. The year was 1994, so CF treatment wasn’t as advanced as it is today, but it was enough to make me feel hopeful.
I went to the pharmacy, picked up the medications, and headed home to wait for the equipment to arrive later that day. When it finally showed up, it included a bronchial drainage table and a nebulizer machine. The drainage table resembled a massage table that folded in half and was supposed to be portable. But it felt like it weighed 100 pounds! I wondered how it would fit into my small car, along with everything else I needed to care for a toddler. Now I had to bring medicine and the nebulizer, along with Jasmine’s clothes, toys, formula, and all those bottles everywhere!
The laughter that once filled our home was replaced by the steady hum of the nebulizer and the rattle of numerous pill bottles. It was a strange sound that was both comforting and yet a constant reminder of our new normal. I filled one shoebox to the brim with medications and started a second one.
I still remember the first time Jasmine had to use her nebulizer. She was only 2 years old, and I was so nervous that my hands were shaking as I placed the mask over her tiny face. But then she looked up at me with those big, trusting eyes, and I knew I had to be strong for her. I whispered some soothing words, and she cooed back at me, almost as if to say that everything would be OK.
Days turned into weeks, and I began to become a bit of a student of cystic fibrosis. I learned about enzymes, airway clearance techniques, and the importance of a high-calorie diet. Each new piece of information was like a double-edged sword; it empowered me to care for her, but it also deepened that ever-present fear.
I watched her struggle to keep up with other kids, and her laughter sometimes mingled with fatigue and heavy breathing. Yet, amid all this, I discovered a resilience I never knew I had. I found an incredible community of parents who shared their stories, struggles, and victories. We leaned on each other, swapping tips and offering support, reminding ourselves we weren’t alone in this. Together, we faced the ups and downs, holding on to hope and believing we could tackle whatever came our way.
As a single father, I also wondered how I would make all this work — maintaining a job, paying the bills and rent, covering the car’s gas, and putting food on the table. Thankfully, my parents lived nearby and were always ready to help whenever I needed it.
The first time Jasmine’s grandparents came to pick her up for the weekend, they had to bring their pickup truck to haul the not-so-portable bronchial drainage table and her air compressor for the aerosols. The aerosol air compressor was a huge, brown steel box that weighed about 40 pounds on its own.
I followed my parents to their house to show them how to set everything up and how it worked. I provided them with a list of Jasmine’s medications and the specific times to administer them to her, including before and after meals, as well as at other designated times throughout the day.
The weekend at her grandparents’ house went smoothly. Afterward, I was happy to have Jasmine back home in my care and to hear the familiar sounds in the house I had become accustomed to. I slept well that night.
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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