Happy Father's Day! My wife and I are parents to a beautiful 4-year-old daughter, Ella (who does not have CF), and our son, J.J., who just celebrated his first birthday. As I was reflecting on my first year of having a son with cystic fibrosis, I couldn't help but think back to my 8th grade choir asking, “How do you measure, a year in the life?”Since so much has happened this year, I thought I would attempt to measure it through what we have learned, and how we have loved.
The first thing I learned as a father of a child with CF was that I did not know anything. I did not know about the disease, how it could impact someone, the complications that could come along with it, or how to treat or care for someone with CF. Thankfully, our care team (shoutout to the U of Iowa!) has been great getting us up to speed and helping us understand all that we are dealing with.
Last year, we were still sitting in the hospital, awaiting the day we could bring J.J. home. Since that first stay, we can easily measure this year in terms of how much time we spent in the hospital. J.J. has had five hospitalizations: three surgeries, one COVID-19 case, and two staph infections in his blood stream. His most recent surgery removed the central line they had used for feeding and medicine, replacing it with a G-tube in his stomach.
As hard as each hospital stay has been, one of the funniest moments in our CF journey made us feel like first-time parents again. J.J. had his first fever after the removal of his central line. I think we called our care center seven times and spoke to three different departments. But as it turned out, it was just a normal teething fever.
One of the hardest lessons I have learned is how hard my wife works. My wife has a great medical understanding and has been a patient teacher - apparently, I am a slow learner. While other families have been great resources for us, she has carried the lion's share of the medical knowledge and responsibility. She could do a sterile dressing change in our kitchen -- as long as I could hold J.J.'s attention. She taught me to help with dressing changes, hook up a medication pump for a central line, clean a G-tube site, do physical therapy, and give our son medications via many different methods. Believe it or not, none of those skills were on my bucket list. I resumed working this year, while she has stayed home to be J.J.'s primary caregiver. The routine does not stop when I am tired, when I am home, in the middle of the night, when I travel, when I am at work. I am so thankful for all my wife has done for our family and she (almost) never complains.
This year I have also learned the value of well-funded research. Not just for cystic fibrosis, but for all diseases. We are waiting for the day J.J. is old enough for modulators. We realize there are some who do not yet have the same treatment options because they have mutations that won't respond to them. We want to be a part of their hope -- the same hope that they have given us!
We are thankful for the work that has been done while we lived our lives blissfully unaware of a looming threat. Those who have paved and traveled the road before us have given our family so much hope.
We have not skipped a fundraiser and will continue to help do our part. We can also measure our efforts here; we raised just shy of $10,000 in our first two fundraisers, and this year is not over yet!
We know we have a long road ahead; we just began treatment for our first bout of pseudomonas at home with our new routine. Of course, it is a rare form of pseudomonas that doctors and researchers are less familiar with. But other than his invisible ailments, J.J. is a great baby. He's gaining weight, running around with his big sister, and has the funniest laugh.
I have learned that our village is populated with more people than we knew, and they are more helpful than we could have imagined. We would like to acknowledge our parents who do everything they can to help -- we are blessed to live close to them. (This was partly intentional, now that Grandma is our neighbor!)
I was told by a friend with CF when we got our diagnosis a year ago that, “More than anything, this diagnosis is love.” That is how we prefer to reflect and measure our years. Measure in love!
Interested in sharing your story? The CF Community Blog wants to hear from you.
