Before the internet, social media, blogs, websites, and literature about cystic fibrosis, I was born. It was shortly before my young parents knew their lives would change forever. They were just happy a pregnancy finally lasted to term. Unbeknownst to them, there was just enough blood trickling in the umbilical cord to keep me alive as I was in severe pain.
My parents grew up fast at age 25. When I was 3 days old, my dad and I boarded the Life Flight helicopter to go to the University of Kansas Medical Center for surgery to clear a bowel obstruction (meconium ileus), which led to my diagnosis of CF. My dad knew about this disease from the loss of his brother, Tracy, who was 7 years old when he took his last breath at their home. And now here they were dealing with CF again.
Those two little letters laid my foundation. As my parents left the hospital a couple weeks later, the doctors waved and tried to say encouragingly, “Just enjoy the time you have with her. Focus on quality, not quantity.”
This new life for them was like opening a brand-new crayon box — all the unused fresh colors. What colors would we use to make this new life?
As a child, I loved to color. I lived in color. My life was books, toys, friends, and family. I laughed with Dr. Seuss and his characters and wore out my Little Golden books, as I was told books would forever give me adventures — they still do. I had TV time only for Sesame Street, Mr. Rogers, and Reading Rainbow. Grover told me I was special. I laughed with Ernie when he frustrated Bert. I ate cookies with the Cookie Monster. Mr. Rogers invited me into his home.
I colored that foundation, green, like fresh grass. I had a full, imaginative childhood — my parents would have no less. I was surrounded by amazing grandparents, aunts, uncles, cousins, friends, and church family. But at the end of the day, it was always mom, dad, and me. The three of us against the world.
My parents made the midnight decision to drive in a snowstorm to the ER. They were the ones who rode behind the ambulance that was carrying me to a surgery, provided my meds, performed chest percussion (before the vest), and drove three hours for my CF appointments in Denver. They made my food in the smelly MCT oil so I would get the calories I needed (they were told not to use butter, peanut butter, mayonnaise, or whole milk, because they were too fatty!)
They worked hard — literally — to keep my life full. My parents never let me think beyond the present. To me, they were my sky — limitless, sky blue, cerulean.
I didn't know all the sacrifices, anxiety, pain, and grief that were behind some of the decisions they made. The biggest step was moving away from all they knew so we could be closer to the CF clinic, as well as a new job with better insurance. It was one of the best decisions they made. They did all they could with what they had and what they knew. While keeping things as normal as possible, they concentrated on the following: feeding me a high-calorie, low-fat diet; clapping my chest to loosen mucus; arranging a medical individualized education program for school; making life-saving decisions; and taking me to doctor appointments.
My colorful world was changing — adding magenta, maroon, brick red — but never without my greens and blues to keep me grounded.
I am not supposed to be here. My life is one miracle after another. I never once thought that I would die from CF. According to my parents, dying wasn't even discussed. I am nothing without the imprint of two people who chose me and chose to survive CF.
My parents and I talk about my life with CF now, looking through the years of notes my mom took at every doctor's visit and childhood photos. In contrast, we discuss the short life Tracy had and the changes in CF care since then. Trikafta® has done more for me in three years than we'd ever imagine.
Mom and Dad revel in the fact that I'm here, aging with CF, and still growing in my knowledge of this colorful life: adding goldenrod, melon, sunflower yellow, violet, plum, and pure white.
I am my parents — they created my outlook, my desire to live, and my belief that my existence is meaningful — and I thank God every day for that.
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