Parenting A Child With Cystic Fibrosis

By Miranda Jackle

Hey, it’s May let’s talk about CF Parenting!

What’s it like parenting when your child has cystic fibrosis (CF)? It’s like regular parenting with an extra side of worry that you do your best to hide from your child and the rest of the world. However, at least for us, we also get to experience an extra side of reward.

Our son Carter has a double mutation of Delta f508. Hearing that for the first time, scared the bejeesus out of us. How could this perfect little boy we just brought into the world already be diagnosed with something so scary? Cue the guilt. What could we have done differently to have prevented this? Of course, the answer to that question was absolutely nothing, it’s genetics. Neither my husband or I (I had never even heard of CF) had very much knowledge of CF, let alone the care our baby boy would require. Cue Dr. Google, which scared us even more! For the record, DON’T DO THAT, Google’s overview of CF is really out dated and basically has worst case scenario laid out. Fortunately for us, the CF clinic at St. Mary’s was able to ease our minds a little and alleviate some of that fear!

So, you’ve got your diagnosis, you’ve got your new knowledge, and a little bit of weight off your shoulders. What’s next? A treatment plan of course! A treatment plan you have to teach and share with every person who may one day be responsible for looking after your kid. Trust me when I tell you, it’s going to take a little while before you’re going to feel comfortable trusting ANYONE to take care of your child the way that you’re still learning how to, but I also say to you LET PEOPLE HELP YOU! Let people who love your child, who are willing to be patient and listen and learn as you tell them for the 14th time when, why, and how they need a certain medication or treatment HELP YOU. I know it’s easier said than done, and I know the guilt you’ll feel from asking anyone to take on that kind of responsibility so you can have a few hours to yourself, or go to work, or date night, etc., but the facts remain, you’ll need it. You’ll need it, and so will your kid. You guys will already go through so much of not feeling “normal” or being different, so if you are fortunate enough to have people in your life to help, accept the help, educate whoever is willing to learn.

As for us, we made a promise to not let CF define who Carter is. We also never want Carter to use his diagnosis as an excuse for not trying things. Of course, some strenuous activities will be just that, strenuous, but not impossible. Carter has learned to recognize when his limit has been reached or close to it, but knows that after a quick drink and a breather, he’s right back playing. That right there is part of the reward I mentioned earlier. The reward of seeing the fights over treatments, and taking medications and all the things pay off. Hearing from the doctor’s anyone on your CF team say things like, “could not be happier with his health” or that “he’s setting the bar” with his health and progress are words that bring me to absolute bliss and tears of joy every single time. It makes all of the appointments, treatments, sleepless nights, hauling of equipment, killing yourself over remembering all the medications, beating yourself up over still forgetting one here or there, super stinky farts and poops, keeping your kid away from people with the sniffles even if people look at you crazy, and ER visits/hospital stays WORTH IT. For instance, yesterday, Carter finished up his first season of t-ball, and the joy and pride that washed over him as he received his little trophy and the smile on his face was enough to make any parent proud and overjoyed, and it did for us. We also in the back of our minds got to be proud on a whole other level, as we got to watch our son hit, run the bases, field the ball, and make some friends, without a single CF related incident all season. WE did that, us as his parents, his awesome teams he’s had over the last 5 years guiding us every step of the way, and Carter himself being the amazing little dude that he is.

So, what’s it like being a CF parent? Scary, hard, frustrating, exhausting, trying, and yeah, at times sad. Sound familiar? Like being a “regular” parent except, sometimes you get to be a little more awesome! I’m certainly not saying it’s easy, and no CF case is exactly like another, but there is truly nothing more rewarding than seeing your child not just survive, but THRIVE in this game of life when the deck is stacked against them. Take the WINS as they come, it won’t always happen, but learning to keep your and their heads up through the losses makes those wins all the sweeter! Be strong, be an advocate, use the resources, accept the help, love those salty and stinky little wild things, and always remember JUST BREATHE!

The best resource I can recommend is the Cystic Fibrosis Foundation’s website. There you can find just about everything you need from information and clinics, to the best recommendation for masks for CF patients during the pandemic.