I have no experience living with cystic fibrosis or understand what it feels like to go through the daily regimen.
I do know what it’s like to give care to a young child living with this disease. I do understand what it’s like to put myself in his shoes and think about living the rest of his life with this rare disease. Although we have lows as parents, we have plenty of moments that leave us undoubtedly optimistic.
I have come to realize that as a caregiver and parent to a child with CF, that we are the most critical piece in our child’s care team. We love our doctor and our team at Riley Childrens Hospital. They keep us relaxed, focused, and involved. Four days out of the year for 3 hours, they see my son. Twelve hours they will spend examining him. We spend thousands of hours with him a year and understand his needs (extra treatments with colds, extra calories, activity levels). I say this as we need to focus on taking a holistic approach to medicine.
We were not allowed to have a chest percussion vest strictly until he was two when other parents had them before children were one. Our son is a chunky, healthy looking boy. What care teams fail to consider is the parents’ quality of life. I don’t like waking my son up at 7:20 AM when he doesn’t need to so we can get his treatments done, resulting in me consistently arriving 10 minutes late to work.
If we had this vest, it would allow us pass along some independence to Carson and make our routine much easier.
I’m not looking for easier though. I’m looking for the best plan for my son. I’m looking for the best treatment available to allow my son to have the best quality of life possible. There are so many “observations” with this disease which I find frustrating. Dr. Seuss calls it the “waiting place” in my favorite book, “Oh, the Places You’ll Go!” We wait for a cold to pass, throat swabs to be reported, & in our case, observe his recently cultured MRSA. This is not only frightening, but hard. Every parent wants that magic wand and to wave it, allowing everything to be fine. Bob Marley sings it well,
“In every life we have some trouble
But when you worry, you make it double
Don’t worry, be happy
Don’t worry, be happy now.”
This is what we focus on in our journey. The happiness. The smiles. The joy. The qualities many parents overlook, but we have been told the hard facts that our son Carson was born with a shortened life expectancy (that we refuse to believe as we are optimistic!).
We cherish every moment and look forward to the next.
When Vertex Pharmaceuticals announced the FDA approval of Orkambi, we rejoiced, celebrated, and cried. We cried because we knew at that moment that Carson’s future just became brighter at that moment. We understand that this is just the beginning of future development.
My wife, Heather and I are fiercely passionate as we give all the energy we have towards fighting this disease. As we attend Cystic Fibrosis Foundation events all over, we continue to meet many motivated and involved individuals that give us terrific hope. Like many other parents, we raise as many funds as we can, have started our own nonprofit, 2 Lungs 1 Fight to aid families in there journey, and serve on various CF related boards.
I often read “Oh, The Places You’ll Go” when I am down or need a pick me up. This book serves every aspect of life if you read into it. He writes,
“And will you succeed? Yes! You will, indeed! (98 & 3/4 percent guaranteed) Kid, You’ll Move Mountains.”
Together we will move the biggest mountain in this world, relieving all of our loved ones and strangers of this disease.
Follow me on Twitter: @jarrodmckee
Article by Jarrod McKee
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This month, PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo Clinic for a community-driven research project investigating the benefits of exercise for CF patients. If you’re interested in contributing to the fund or want to become a CysticLife member, drop by CysticLife.org or donate here today! Don’t forget to share this post!
