In Praise of All My CF Caregivers (But Mostly My Parents) - Part 2
I'm thankful for the support of my friends
While my friends were not traditional caregivers, they all cared and would help out in whatever ways they could. My mom was heavily involved in fundraising for the Cystic Fibrosis Foundation for as long as I can remember, and as I went into high school, my friends started to get involved with fundraising as well. Some of my closest friends would help run events, attain sponsors, or just give their time.
I even remember the high school football team, of which I was briefly a part, using their size to help set up a charity garage sale (and help themselves to the free food after). To this day, I still have friends coming to help out at that same garage sale, and I still have friends that check-in to ask about my health and wish me well, and for that I am thankful.
My family has always been involved in fundraising
Fundraising for the CFF has been a significant part of my life. I mentioned my mom having been involved, but I was also a part of it since before I can remember. Early on, patients were poster children, attending fundraisers to help raise awareness. Things changed when patients could no longer be in close proximity to each other, which was okay with me as I didn’t particularly like being singled out for having CF.
Despite this, my mom persisted in reminding me of all the good fundraising does for all patients. So, I would still help out by giving my time or the occasional speech in person or via video. I still prefer to blend in helping out at garage sales, but giving those speeches did more than raise awareness. It grew my public speaking confidence, which carried through school, to my career, all the way to writing this article.
My parents advocated for me
Speaking of school, my parents were hyper-vigilant in making sure I was always accommodated for and supported by teachers and school staff. Depending on my health at the time, I was allowed extra time on tests, or tutored if I missed class. They would let me leave class for medical procedures or if I was just feeling unwell. I was even allowed late entry into school itself (which coincidentally happened more as senioritis set in).
Even with all these allowances, I never got the chance to forget how important school was for my future. My teachers and my parents were always over my shoulder. They taught me to effectively get my work done, manage my time, and attain the best grades I could. My teachers and school staff prepared me to succeed in school and subsequently my career, and for that I’m thankful.
My parents nurtured my independence
I had lots of help in preparing to succeed independently, but no one helped more than my parents. Through their diligence in keeping up with my treatments, doctor visits, and medications, I witnessed and learned how important it was to keep primary focus on my health before anything else. Being a part of so many sports teams (and having to run extra laps when Coach Dad said to) taught me the importance of activity and exercise.
My mom loved (and still loves) feeding me until I’m about to explode, which taught me how nutrition and the right quantities and kinds of calories can affect my health. My dad even went so far as to create a hand sign to silently remind me to take my pills. Of course, my entire family learned it and now lovingly teases him with the sign at family events.
I always felt supported and loved
Like my neighborhood friends, my siblings and cousins grew up with my treatments, pills, and illnesses being facts of life. This allowed for much more organic extended family sleepovers and kept me from feeling alienated. Plus, with aunts and uncles often checking to ensure I was okay, my parents could relax with such get-togethers.
My extended family also supported me by fundraising for the CFF, helping out at garage sales, creating amazing ads for the Harvest of Hope ad journal, and even managing to wrangle a big group of us cousins together for Day at the Races. My sisters take after our parents and ask me how I’m feeling, how my doctor visits go, and bring up new breakthroughs like the recent Trikafta approval. It's clear that my family has cared so much for me my whole life, and for that I’m very thankful.
Thank you to my friends and family for your support
This time of year has me appreciating everything that direct and indirect caregivers have contributed to my life. Trust me, there is much more than can be contained in a few articles. Like the title of the article says, though, I’m most thankful for my parents. No one has sacrificed more of their time, energy, money, or emotion than my mom and dad.
I hope they know that I appreciate everything they’ve done and given more than words could ever say. That’s what I hope this article can accomplish: thanking all those who have helped me on my journey, but also inspiring any readers to reflect on and thank the caregivers in their lives, because on some level, I’d like to think we’re all each other’s caregivers in some small way.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?