A Mother’s Manual For Cystic Fibrosis

Before I was diagnosed, nobody knew what was going on. I didn’t show typical symptoms of CF. I had a rash from head to toe, was very cranky, and due to an inability to keep food down, dropped close to my birth weight. I went to different doctors, all of which had different opinions. One doctor blamed my “failure to thrive” on my mother’s breast milk, another thought it was allergies. At six months of age, after months of guess and check, I was taken to University Medical Center in Tucson, Arizona at the behest of my military doctors. There I was diagnosed with Cystic Fibrosis. Legend goes that I tested positive several times for the disease, but the doctors hesitated to believe the results due to my a-typical symptoms. My case was actually written up in a medical journal because of my unique manifestations of the illness at a very young age. And so the journey began.

Once I was diagnosed, my mother was frightened and confused. She had never heard of CF and with a life expectancy of 20, the outlook was grim. In 1980, the year of my birth, about 4% of people born with CF died in their first year. Being told that you will outlive your child is something that any parent would dread hearing. Doctors didn’t stop there however. The list of “certainties” my mother was told only went on: “Your baby isn’t in perfect health”. “Don’t expect a normal life for your child”. “Your child isn’t like other children.” “There’s a good chance your son won’t live long enough to graduate from high school”. “Your son will have limitations on what he wants to do with his life”. “Consider yourself blessed if he sees his twenties”. I often think back to that time (by putting myself in my mother’s shoes) and feel extreme sadness for what my mom must have been going through. Here she was a 24-year-old woman, with a husband who was constantly away on military duty and obligations, with a sick child and information that didn’t paint a pretty picture.

Motherhood, for most, is a time filled with joy and excitement. But what about the few mothers who are faced with the unexpected? The potentially devastating? Some women were created to face these challenges, I’m lucky enough to call one of those women Mom.

I thank God everyday for my mom. My mom was the perfect woman to be put into this “dire” situation. There was no way in the world she was going to let me be a statistic. We were, together, going to face this disease head on. She has been the best teammate a (sick)boy could ask for. I had CF; CF wasn’t going to have me. Our attitude, our efforts, and our determination would directly effect my quality of life. Want to know where my outlook on CF came from? Her name is Christine. She has never, ever, let me view CF as a crutch or curse. She never treated me differently because of CF. Is there a manual on how to raise a child with CF? No, but my mom sure should write one. She threw out all of the “certainties” doctors burdened her with, but allowed one piece of advice to mold her mindset. He said, “Listen, Ronnie has a physical disability, but you don’t have to make him mentally disabled as well.” With that, my mom decided to do what I feel she was born to do, just be a mother.