I am about the same age today as when my parents welcomed me into the world. Though, as I am told, my first few years weren’t all sunshine and rainbows. I suffered from different ailments throughout my early infant years. The most common issue was an incessant ear infection, or so everyone thought. Often my unrelenting and undiagnosed CF led my parents to more questions than answers about my health. It was a classic rare disease journey to a diagnosis.
Finally, I received my cystic fibrosis diagnosis a few years after I was born. I was two when they were delivered the news. For my parents, those days must feel like a whole lifetime ago.
Today, parents new to the cystic fibrosis community are faced with a completely different reality. I describe the early 90s as a time when optimism was high – after all Pulmozyme had just been approved by the FDA, the CFTR gene had been identified and gene therapy was the way of the future – but standard CF care for exacerbations and flaring symptoms had hardly changed. Survival was anything but a sure bet back when antibiotics, some enzymes and a dose or two of Pulmozyme were prescribed without much else.
As I stand ready to embark on my journey through parenthood (it hasn’t happened yet for those of you keeping score at home!), I have found myself reflecting on what my parents must have felt in my early years. As with all CF parents, they were dealt an unimaginably tough hand at a hard time. There are no secrets about what cystic fibrosis can do to a family from the stresses on a marriage to the dynamics between siblings, and the time required to actively care for the condition. My empathy for CF parents as they walk, often unknowingly, into the cystic fibrosis journey has certainly been renewed. I can only speculate about the fear my parents felt for their son – not to mention the moments of strain they surely felt for Sydney since, although, she is younger than me, she was born before I was diagnosed with CF. It’s with that feeling that I also strain for all other CF families when they cope with their own new diagnoses.
I will always find inspiration in CF parents out there, especially those I talk with because they share the same sense of determination, drive, and resolve that I have seen from my own parents. My dad very publicly gets a lot of credit for the work he has put into our shared cause, but often unseen is the direct care both of my parents, and especially my mom, provided to me as a child and then again as a twenty-something when my health cratered. I know their efforts are not unique, which is why whenever I chat with a CF mom or dad for the first time at one of my talks or over email, it immediately feels like I am striking up an old, distant relationship. Often, they are people who put their children first and will make any sacrifice necessary for them.
That’s the kind of parent I hope to be one day.
I have seen the very best parts of what it means to be a parent from my own family. Both of my parents made it their goal to see me into adulthood, married, and a father one day. In some ways, I’m sure for them it feels like they’re crossing something of a metaphorical finish line. For all the times they had to see me beat up in a recovery room or watch me cough to the point of vomiting without any way to help, I think we’ve all found a little relief in the irony that I’m packing up a hospital bag for someone other than myself for the first time in my life.
I have been overwhelmed with an unbelievable feeling of thanks – that is, gratitude for everything my parents did for me and my family after I was diagnosed with CF. Standing at about the same age as them when I was diagnosed has been incredibly humbling. The effort they – and all CF parents – mobilized to turn themselves into the best possible caregivers has brought on so much appreciation that I can’t stop thinking about how they managed those first few days after I was diagnosed. Yes, I’ve had a tough ride with cystic fibrosis, but I still can’t imagine what they must have gone through from their side of it.
In so many ways, I couldn’t be more thrilled for them that our family is about to expand.
Though, I am selfishly going to finish with this. Thanks, especially, for allowing the term CF parents to evolve. We’re all walking into a world where CF parents will no longer only describe the parents who raise a child with CF. Now, we can use it to describe those of us living with CF who also get to experience the joys of parenthood.
