It's a twice-daily dose of respiratory therapy accompanied by Marvel comics meets Power Rangers meets Lego Batman while sitting next to my best bud, Simon. He's a typical 6-year-old thrill-seeker in every way who has to work a little harder in life to stay healthy because of his cystic fibrosis.
We knew Simon might have CF when he was born. Susan and I learned we were both carriers after the birth of our oldest daughter nearly 13 years ago. Newborn screening revealed that both of our daughters are carriers, just like us. Simon was symptomatic even before the results came back, so, although we were hopeful he wouldn't have CF, we knew the possible diagnosis. That was the extent of our knowledge of CF.
What we didn't know was everything life with CF would entail. We didn't know that we'd be depositing a tiny packet of salt in at least one bottle of pre-pumped breast milk every day. (Thank you fast-food chains for turning a blind eye when we stashed a few extra packets in the diaper bag each time we visited.) The necessity of a daily bottle feed was sweet for me. Since Susan breastfed all three kids, I wasn't able to enjoy feeding times with any great level of consistency with our girls. With Simon, I was afforded the bonding opportunity almost daily.
We also didn't know that capsules of oral enzymes would need to be split and poured into his tiny mouth prior to each feeding. Full confession: not only did I not know the pancreas was an organ highly affected by CF, I also didn't really know what the pancreas did until Simon.
Simon just started swallowing whole capsules on his own this spring. Pretty good for a 6-year-old in our family; the pre-teen still gags. Bonus: our applesauce budget just got cut in half. Holiday World, here we come!
Although we knew that CF included mucus-filled lungs and difficulty with breathing, we had no idea what respiratory therapy looked like. I remember the early years with the tiny mallet. I'd take a daily turn, usually in the evening on weekdays since I worked during the day and Susan was at home with the kids. As much as it was a challenging schedule to get behind mentally, hindsight has revealed ways that we've bonded as father and son probably dating back to those earliest moments. I'd give CF back in a heartbeat, but can certainly see the positive ways we've been shaped by the routine. I wouldn't want to trade any of those moments.
Simon's sisters turned 5 and 6 right after he was born. Having older kids in the home while raising any toddler is a total win. When the youngest's daily regimen includes enzymes, medicines with sterilizations, and lengthy bouts of airway clearance, that win is magnified. When holding a 2-year-old in your lap who's wearing an oscillating vest, having an 8-year-old around to fetch various things is pretty awesome. Whether their help included bringing the next med-filled neb cup or simply sitting with him, the girls have been involved since the beginning.
As he's gotten older, I'm sure they've enjoyed the added screen time, too. Honestly, screens are one of the ways we keep an active little boy engaged in his treatments without complaining about the regimen. Not our parenting preference, but consistent health matters more and it does have other benefits.
This year, I introduced Simon to “Star Wars,” starting with the originals, of course. Like other dads who grew up in the '80s pretending to be Luke Skywalker, passing it on was a joy for me. I couldn't have timed it better had I tried. When my boy first heard the villainous music and Vader's deep voice and breathing sound coming from his mask, Simon was wearing one, too. Simon's just happened to include Pulmozyme.
As a dad, I know the need to be intentional. Every kid has hurdles to overcome. When it's a genetic disease, you're simply able to identify what the issues are -- or might be -- really early in the game.
My work sometimes involves evenings, weekends, and travel. In our daily rhythm, I'll never have the quantity of time with Simon that my wife does. I've learned that it's not about the quantity of time, but the quality of the time we spend together.
I'm enjoying the boy that Simon is, focusing on the man that he will become, and learning to be thankful for tiny blessings amidst a terrible disease. Being plugged into his care and making it a fun part of our everyday relationship is a goal I don't mind having.
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