In Praise of All My CF Caregivers (But Mostly My Parents) - Part 1
The holiday season is upon us, and this time of year allows me to take stock of everything I have to be thankful for. With this platform, I’m especially thoughtful of and thankful for the people in my life who have been there to care for me and help me care for myself, and that’s even before I realized that November is National Family Caregivers Month!
CF has been a burden all my life, but I would not be where I am today had it not been for all the doctors, teachers, neighbors, friends, family, and most of all, my parents helping me along. Many of them have taken on more than their fair share to make things easier for me. I want to take this article to share how thankful I am for all their hard work.
I cannot imagine how my parents felt
My CF diagnosis came when I was 7 months old, after not being able to gain weight and getting sick (some of my baby pictures have me looking like a little alien with a giant head and tiny body). I can’t imagine what my parents went through during that time. They initially didn't know what was happening, only to learn I had a genetic disease with a life expectancy of 19.
Without speculating on what they were feeling during that time, what matters is that they didn’t give up. My parents got to work learning how to care for me and making sure I was as healthy as I could be (as evidenced by videos from my first birthday party showing off my healthily big butt and thick thighs).
I'm thankful for my care team
One aspect of my care involved seeing a CF doctor every few months for checkups, to monitor my progress, measure the airflow in my lungs, and make sure I didn’t have any infections creeping up on me. It feels reductive calling a CF care team simply “doctors,” because I've visited them several times annually my entire life. I see them more than some of my actual family, therefore I consider my doctors part of my extended family.
I’ve seen numerous different care teams over the years and developed close relationships with many of them. Maybe I’ve been lucky, but it seems like they’ve taken a personal interest in making sure I’m as healthy as I can be, getting me resources to assist with finances or medications, and generally being available for me to contact via email or personal cell phone whenever I feel the need to. My care team gives me the tools and enables me to keep fighting CF, and for that I am thankful.
My parents needed to learn a lot about CF
Chest physical therapy was one of the earliest things doctors taught my parents when it came to care. To keep my airways clear, my parents learned how to pat my chest, back, and sides to help quickly move air in and out of my lungs. I remember laying over their laps in front of the TV while they did it, eventually dubbing it “patty babies”. This kept me healthy until technology could provide a device to perform the PT treatments. My parents probably gave themselves arthritis making sure I was in good shape though.
They also found clever ways to administer essential digestive enzymes by mixing them into applesauce, or the more-preferred swirl pudding. This helped me to absorb nutrients from food to maintain a healthy weight. When it came to nutrition, my parents put a lot of trust in our neighbors too.
I had a good childhood
I grew up in what I now realize was an idyllic neighborhood; there were always kids of all ages running around between houses. We were playing games, riding bikes, or eating meals wherever we happened to be at the time. I’m grateful to have been able to participate in childhood the way all the other kids did, and it was possible through all the neighborhood parents working together.
Enzymes were stashed at basically every house on the street in case I ended up eating there, and all the parents were conscious of if and when I needed to be home for a treatment. It must have taken a load of worry off my parents’ shoulders. Plus, it certainly let me grow up feeling like all the other kids, and for all that I am thankful.
My parents were cystic fibrosis pros
My parents had a large hand in making me feel like I was like the rest of the kids. One big way was by normalizing my treatment routine to occur even when I had friends over. Everyone got used to seeing me use a nebulizer (and maybe using it for some cool fog effects while playing with toys) or having patty babies done because it was just part of my life. I was also part of countless little league teams, many of which my dad coached. The teams primarily kept me active and healthy year-round, but I also developed friendships that persist through to today!
Read on to part 2 of this article, where I'll continue to heap praise on my friends, teachers, and family!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?