My mother, Ann, fought for me from the minute I was born roughly 40 years ago. While doctors couldn’t quite figure out why I experienced failure to thrive, my mom knew there was something wrong. When my sweat test came back negative, she was determined to get me transferred to a bigger hospital, the local University of Iowa Hospitals and Clinics, where I was then promptly diagnosed with cystic fibrosis. The prognosis in the ‘80s was poor, with doctors telling my parents I was likely to die before my 18th birthday because there wasn't as much information about CF readily available.
Yet, my mom demonstrated one valuable life lesson from the very start: try to have a good attitude no matter what the circumstances are. The bond between a mother and her child is an unbreakable one, a force of nature. I know being a mom can be both so rewarding, yet extremely challenging. But being a mother to a chronically ill child adds a whole other layer of care and dedication. My mom never treated me differently from my siblings and always let me participate in whatever activities I desired to do. From breaking up my pills into what I loved most at a very young age (ketchup!) to offering to help clean my nebulizer pieces after doing breathing treatments, she was always thinking of ways to make my life easier in any way possible.
As I grew older, I grew sicker, developing infections in my lungs, CF-related diabetes, CF arthritis, severe sinus disease, GI issues — you name it. I considered the hospital a second home. Luckily, my mom worked next to the hospital, so when I was inpatient she would find creative ways to make me feel better. Whether it was surprising me with a hot, fresh cup of coffee from a local brewer every morning or coming over to walk alongside me and my IV pole, she was always involved.
Of course, as I grew older, there was a shift of control or an unofficial “passing of the reins,” if you will. It gradually went from my mom making the main decisions and taking me to appointments to me becoming comfortable advocating for myself. But no matter what, I always wanted my mom there with me. She would let me squeeze her hand (nearly crushing it!) during the sinus debridements I had to do while awake, and she would let me sob to her uncontrollably if I was struggling with hospital life.
The sacrifices mothers make for their children with CF are immeasurable, and they even can extend beyond their own child to the CF community.
Before it was considered dangerous for people with CF to spend time together due to risk of cross-infection, there was a hoard of us who would walk the halls of the hospital like we owned the place. I grew very close with my friend, Rodney, who was in quite the predicament. Rodney describes it like this:
“I was hospitalized in grave need of a lung transplant. I never liked to ask for help, but when I did and needed it most, even my closest family members weren’t available to help. I needed to leave the hospital’s full pulmonary wing, so I could give my bed to another patient with a more realistic chance for recovery. That’s when the idea of a nursing home came into play. But I didn’t stay even one night in a nursing home because I started needing more care than they could provide.
After speaking with my social worker, we decided that I was going to start hospice. That is when Ann stepped up and said I could stay in her home which was just a 10-minute drive to the hospital. She was very kind to me and never gave any indication that I was a bother, even though I knew that I was.
As part of my treatment protocol, Ann took me to the hospital daily — all while working full-time, caring for Molly, maintaining her home and everything that goes along with day-to-day life. I will never be able to repay what she has given me. Ann saved my life.”
Years later, in 2022, when Rodney needed a second double-lung transplant, my mom and family wanted to help him again, only this time we were unable to meet the need. It was too strenuous on us. In the time since Rod had his first transplant, the unthinkable happened. Not only was I much sicker and had more complicated health struggles, but in 2017, my mother was diagnosed with stage 3C ovarian cancer and was undergoing chemotherapy treatments. Her diagnosis made me feel like the ground beneath my footing was unstable. I remember thinking “How could this be true? We always knew I would struggle, but now my mom too?”
Feeling betrayed by life’s injustice, I cried out in angst when I found out. I’ll never forget that day; I was attending my first BreatheCon, which is an online conference for people living with CF. I got a text during BreatheCon that my mom, who I was now living with, was at an ER in Colorado, where she was vacationing. That time was very chaotic and challenging, trying to learn how to be a good caregiver to my mom and still take care of myself. Of course, I had a great role model for how to be an effective caretaker all those years. I later found out that my mother’s first thought when she was diagnosed with cancer was being worried she wouldn’t be able to care for me or my siblings. We reassured each other that no matter what, we would all be OK.
My mom and I both being chronically ill made our already tight bond even closer, if you can believe it. We had to have painful conversations about my death and what I want. Now, with me being on modulator drugs and my mom having cancer, we don’t really know anymore just what to expect. So, we promised each other we will cherish each day together, no matter what, especially on those hard days.
This is dedicated to those moms who worked tirelessly and who are unrelenting in the fight to help CF one day stand for “cure found.” My mom is the reason I’m so resilient and is a big reason I’m still here to this day. I’m eternally grateful for her and for all the other moms out there who us CFers may call our own personal guardian angels. For all of you brave moms out there who fought to give your child with CF the best chance possible, without denying them the chance to live a full life – thank you!
Interested in sharing your story? The CF Community Blog wants to hear from you.
