The question that I get asked most often from parents of children with cystic fibrosis is, how did my parents do it? What was their secret to raising someone who is independent, positive and living a full life?
They were honest.
The day I learned that CF was fatal was also the day that my mother taught me to be realistic, to look on the bright side and to never let CF get in the way of me living my life. I was doing a fifth grade research project on a topic of my choice, which was CF, and my mother had given me a book to read. The very first sentence was: "Cystic fibrosis is a chronic, life-threatening disease." I didn't quite have a grasp on what "chronic" and "life-threatening" meant so I asked my mother, the nurse, to explain it to me. "Well," she said, "It means that cystic fibrosis doesn't go away, and some people die from it. But you know what? You can also get killed by getting hit by a bus or in a car accident. So the best thing to do is to just live your life and enjoy every day.
They never let me sacrifice anything because of CF.
A few years later, I found out that I would need to be in the hospital during my first semi-formal school dance. Our school had a rule that you weren't allowed to go to the dance if you were absent from school that day. When my mother called the principal to discuss the matter, he exhibited some hesitation in bending the rules for me, so she calmly stepped outside and told him, "We have NEVER let CF get in the way of Lauren living her life. We have NEVER put her in a bubble." So, sure enough, after having emergency surgery and being in the hospital for a week, I put on my red, sparkly dress in the hospital bathroom, curled my hair and my dad swept me away down I-93 in my chariot -- the family mini-van -- to the middle school dance.
Climbing Mt. Lafayette in New Hampshire with my dad.
They made sure I had fun.
My first hospital stay, although scary, was filled with memories of visitors, presents, games and fun. My mother stayed by my side and my father brought us home-cooked meals every night. My mother made every hospital visit an adventure, like taking me down to the jukebox late at night and dancing with me on the empty stage. My father would take me to the candy shop to reward me for doing my treatments and he played cards and games with me during these "treatment times." When friends came to visit me at the hospital, we would give them rides on the hospital bed, raising it as high as it would go. And when I first got my vest, we would sing songs together and laugh at my shaking voice … I may or may not still do this and send videos of it to friends.
Although years later, my mom would confess to me how worried she was during those times, she never made CF a big deal, so I never made CF a big deal. It was this attitude that has allowed me to live my life despite having CF. This attitude is what led me to participate in gym class (taking breaks when needed); to swim in lakes, ponds and public pools; to go out to my favorite restaurants without disinfecting the entire table; to have sleepovers; to go to public school (even during flu season); and to take my enzymes at school without having to be supervised by the school nurse. Although they wanted to protect me, my parents understood that this short life would be nothing without quality. What sort of life would it be if I was kept in a bubble?
CF wasn't supposed to be an intrusion into my life, so I grew up never letting it be.
When CF parents ask me for advice, I always tell them to treat their child no differently than they would treat a child without CF. Yes, they should make taking care of themselves a priority, but it is important to do so without sacrificing the beautiful moments of life.