"Parenting with CF" by Chris Kvam

On April 14, 2023, my wife and I welcomed our second child into our family via adoption. Becoming a parent is an intense, emotional experience. The journey and wait of the adoption process is difficult, the outcome is amazing, and parenting is hard. Parenting an infant at 43 years old, living with CF, and with a 6-year-old son, has been both difficult and incredibly rewarding. But it is hard. I lived through most of my young adulthood driven to live a life undefined by my CF diagnosis, very focused on achieving short-and medium-term goals that motivated adherence to my CF care. I grew up learning how to maintain and maximize my physical and mental health and abilities, and how to make the most out of those opportunities that presented me with the chance to sustain them. Over the last forty years, the tools at my disposal to maximize my health have vastly increased, and I am thankful that my life experience is no longer as unique as it once was for people with CF. Through hard work, support, medical advancement and good luck I have been given the chance to be a parent.

I did the things. I went to college and was a collegiate runner. I worked, I got married, I went back to law school, worked, ran marathons, traveled, biked over the Canadian Rockies, etc. This paradigm of using my abilities while I had them, not wasting time, and minimizing potential for future regret worked reasonably well to curb longer term uncertainties about my health and anxiety about my future with CF. It does not work in the context of parenting young children. It is one thing to set goals for one’s self, to try to fulfill them, and not to focus on longevity as a measure or need. It is another thing to be responsible for young children who rely on you, and whose lives would be forever altered by my absence.

In the face of these anxieties, I am trying to maintain my focus on the shorter term. This makes me an incredibly intentional parent. I do not take my time with either of my children for granted, and hopefully in the long run, I will be here to see the fruits of that love. I try not to dwell on the uncertainties and what-ifs of my future health. I remind myself constantly that it would not have been constructive for my parents to ask my physician at the time of my diagnosis in 1984 “what are the chances that our son will be an attorney, financially stable, running marathons and a father when he is 43 years old?” It is just as harmful to ask myself “what are the odds that I will see my children in adulthood or meet my grandchildren should they make those choices?” Odds do not matter. I remain dedicated to my CF care routine. I may not be able to promise my family that I will be with them forever, but I owe it to them to do everything I can to maximize my health. I am reaching an age where my peers without CF are starting to experience the kinds of losses that adults with CF are very familiar with – a former classmate has a heart attack without warning, or a catastrophic cancer diagnosis. Given the suffering that is present in the world and its unavoidability, I would rather see risks to my health coming and prepare for them and live my daily life with them in mind than have a sudden loss of life or ability. Parenthood is an exercise in hope. This is true for everyone, not just people with CF, and with that hope in mind I am trying to instill a deep appreciation in my children for this gift of life, undefined by my CF diagnosis.