What I Know Now That I Wish I Had Known Then

After my son Nico, was diagnosed with cystic fibrosis, I felt about as hopeless as a person could. I envisioned having very few years in which we could live as other families, very few years to actually enjoy life. I could not picture Nico as an adult. Never could I have imagined that at age 10, he would be the fastest runner in his grade, have won the presidential fitness award, be one of the tallest in his class and frankly that he would still be able to breath. If only my husband and I could have foreseen the future to know that despite his intense medical regime, he would have a great quality of life and bring us such joy daily with his zest for everything.

When I look back on that time, I now realize that I met the criteria for depression, and wish in retrospect that I had sought help. I regret now that my initial intense anticipatory grief could have been partly diminished had I sought treatment. As we initiate routine newborn screening for CF in California, we need to be very cognizant of the potential for postpartum depression, which is quite common even in mothers of healthy children.

My husband and I have very different coping styles. My husband was more fatalistic initially and tried to suppress thinking about CF. Because of his coping style, as a family, we have been able to appreciate more the here and now. I, on the other hand, read everything I could about CF and wanted to talk about it non-stop. Though it was consuming my life, it promoted a strict adherence to his medical regime. In the beginning we each tried to change the way the other coped. This initial period of adjustment was quite difficult and caused anger and resentment. We both finally realized the advantages of each coping mechanism and the beneficial results of each to our son. We now have more of a balance. Certainly, life could have been easier had we accepted this sooner.

Our family has found our own ways to try to combat negativity in the face of coping with CF. Nico has taught us so much in this regard. Because CF can be so isolating, Nico began to gravitate to TV programs highlighting people with various physical challenges by watching the Discovery Health Channel. He immersed himself in the lives of those with dwarfism, heart disease, seizures etc. He learned of others' challenges and how they maintain a positive attitude by learning to appreciate what one has rather than what one does not. We are also beginning to do the same with books. Our biggest coping strategy has been distraction, distraction, distraction, If he is on IVs and we can't go swimming then ice-skating it is. After a doctor's appointment, which can often be so disappointing, we will try to make it to a movie or museum outing. Nico taught us that the IV fairy comes every time a line comes out.

One aspect of CF that parents worry about is talking to their children about CF, especially in this era in which children with cystic fibrosis have little contact with one another. My husband and I have generally had the same philosophy as we would with discussions of sexuality. We answer questions honestly as they arise. We made a conscious effort to use the word-cystic fibrosis from the beginning so that he could gradually learn about it rather than facing the shock at an older age.

Finally, we think that as parents we must do everything within our power to change the slope of the decline of lung function. We absolutely can make a difference in altering the expected decline in lung function by strict adherence to treatment and by participation in clinical trials. There are parents who are resistant to their physician's advice to start IVs, who seem to live in a state of harmful denial. When our children are young and healthy and with mild lung disease, it is easy to cope by pretending the future is far off and that somehow your own child is an exception and will not be affected by CF. I believe it is, in part, this false sense of security, which keeps some from participating in clinical trials. What is the main reason I want to have my son participate in clinicaltrials? Purely selfish! I want him to have access to potential beneficial treatments sooner; treatments that could buy him more time.