My stepfather and father are two very important and special people in my life. Both share their own stories about having a daughter with CF.
"My Little Angel"
My name is Jimmy and I’m Alexis’s dad. About six months after Alexis was born, her mother and I found out she had cystic fibrosis. Whenever my little girl got a cold it seemed like it would take forever for her to get rid of it. Her pediatrician would prescribe antibiotics but the colds kept coming back. One trip to the local doctor’s office in Frederick, MD changed our lives forever. Her pediatrician took a sweat test which came out positive for CF. Before we knew it, we were at Johns Hopkins Hospital in Baltimore, where they performed the test again. The results were the same - positive for CF. Her mother and I were stunned because we didn’t really understand the disease. We quickly learned about CF and started treating Alexis with proper nutrition and chest physiotherapy. You would never have known there was anything wrong with Alexis, but on the inside things were different than my wife and I. Understanding the disease made coping with it easier. She was only “different” because of a single defective gene.
I’d pray every single night while rocking her to sleep. “Please give this to me, not my little angel Alexis.” It seemed like God wasn’t answering my prayers. As time went on, Alexis got a little healthier. Before every meal, Alexis had to take enzymes that we’d mix in applesauce. She was so good at complying with this “chore.” I wonder to this day if she hates applesauce considering she ate it three times a day or more. When she was old enough, she started swallowing the enzymes with water, which I am sure was like Christmas to her. When Alexis was old enough to realize there was something different about her she began to ask questions. I could only answer to the best of my ability, since she was just a toddler. She understood.
My little angel is the toughest and smartest daughter any father could have. She is my idol because she goes through so much each day. God has answered my prayers in different ways that I now understand. Today, she is independent and traveling and doing things that remind me of myself. I see a lot of myself in her, as well as her mother. She is one determined angel ready to conquer the world.”
“Wow. Where to begin? Alexis was eight years old when her mother, Nesha, and I started dating. Meeting Alexis for the first time was a bit nerve wrecking for me. Nesha had invited me over for dinner where she introduced me to her little girl. I had brought a few games over because I figured Alexis and I could get to know each other through playing pick-up sticks and other silly games. Alexis was very stand-offish and wanted nothing to do with me. It took her quite a bit to warm up to me. She had been let down before, so earning her trust became my main mission. Once we started spending more time together, our relationship quickly changed for the better. She was able to feel comfortable around me and secure enough to talk about cystic fibrosis. It didn’t take me long to fall in love with this little girl who was born with such a terrible disease. Upon this, Nesha had informed me about cystic fibrosis, but I hadn’t expected the wild rollercoaster of a ride that was ahead of us all. Nesha and I were married two years later. I didn’t just exchange vows with her mother, I also vowed to Alexis that I’d be by her side forever. I even promised to her grandparents that as long as I lived, Alexis would be my top priority.
Throughout watching and listening to Alexis, I have learned so much. She has taught me how to be a better person and to live each day, happy. She has proven to me that laughter is the best medicine.
Alexis and I have been through a lot during our 19 years together. Tears, laughter, and everything in between. She’s not always an angel, but it’s never long before I’m back to being proud to be her stepdad. We’ve spent holidays in the hospital together, just her and I. I was there to watch her graduate high school, celebrate her 21st birthday, and watch her take the CF wonder pill, Orkambi, for the first time.
Life with Alexis and cystic fibrosis hasn’t changed much for her or myself - bottom line, she wouldn’t let it. As you can tell my perspective on being a stepdad of a child that has CF is a bit different. No gloom and doom and sadness from me, and guess who taught me that?”
-Stoney, my amazing stepfather