"Adult Lessons in a Child's World - The Journey of a Sponsor Child" by Amber
“Amber, tell us about you, what is your favorite color? How do you stay healthy?” The news anchor asked with a bright tone.
My feet were swinging with the extra space between the high bar like stool and the floor. The room was blue and the desk was crescent shaped at the WNEM-TV 5 news station. Without skipping a beat, perhaps not realizing I was being broadcast over the nightly news, I answered “Purple, and I do cartwheels to stay healthy.” The room let out a chuckle, that was my clue I said something right. I don’t remember much else about that experience, and I am grateful no family members have dug into the now cryptic VHS archives to uncover how the rest of that interview went. I have one thing to say about my young self, I had yet to learn fear.
Me and the hosts of the Saginaw CF walkathon 1996.
I was diagnosed with Cystic Fibrosis at the age of 2. I recall being young and going to many CF related events. My mom never missed one and my family attended many walk-a-thons, parties, or other fundraising activities. I was what they called a CF Sponsor child, from age 4 to 6. I figure I got “less cute” after that. This often meant walking in front of crowds and saying my name, it’s a bit ironic that now doing so seems pretty daunting. I got to meet a bunch of cool people though, and for some reason they all seemed to like me. I bet it was my stylish bowl cut bangs with my long flowy ponytail that did the trick.
My mother has always been my best advocate, she still is today. She is also a social butterfly and glows when getting to know others. I got the sense she really liked these events, and at the point when I realized these events were related to the illness I have I began to wonder if my mom loved me… or the illness.
My childhood consisted of thumping that we called “pats,” the humming of the nebulizer machine, 3 sets of therapies, the constant attention to how I feel, taking enzymes, and advocating. Stuffed between the beanie babies of the 90s were spent tissues, nebulizer cups, and empty polozine vials. All these adult concerns smushed into my young life had taught me how to dream. Sometimes I felt like an inconvenience to my siblings and a hog of our parents' time, especially my mom’s. Does it look to them like I am more loved? Do they despise me because of all the attention this illness gets? These questions followed me into my adulthood.
We walked into the crowded hall, balloons and banners were spread around. A frail girl in a wheelchair was at the front, many people were lined up to meet her. “Why are we at this lady’s birthday party?” I asked my mother. “She has CF, just like you.” she said with a smile. I didn’t want to be there. I had no interest in meeting her, I think my mom wanted me to stay back anyway, it was something about getting each other sick. As the crowd celebrated her milestone year of 18, I wondered why I should form such a brief connection where all I knew in common between us was the disease that would bring us both to our demise.
As soon as I had the freedom to do so, I ran from this community I was once so artificially close to. Despite my years as a sponsor child I never got to know anyone with CF, not in a true relational way. For many years following I did the bare minimum to stay healthy and talked about CF when I had to, but no more than that. I didn’t hide it, but I downplayed it as nearly normal stuff I need to do that others don't.
It was the month of May and as I entered the walk-a-thon area all the memories came rushing back, but different this time. My husband walked with me and his family joined us. Their support through thick and thin, a deep love of the person they were walking for, that feeling like an embrace was as true back in my childhood years as it was to me that day.
Through my college years and a few heath dips, God brought me perspective. I learned that my sister, happy to pass the center of attention to me, was relieved to escape the chaos all those years ago. I began to actually get to know others with CF, and realized we have so much more in common than this illness. I reconciled that facing adult challenges as a child gave me a passion for pediatrics, and fueled my drive to get through design school.
CF advocacy looks different for me today. I have many friends with CF, some of them are the best friends I have ever known. We are there for each other through all the ups and downs. I recognize how the fundraisers of the 90s helped the Cystic Fibrosis Foundation make great strides in CF treatment. I now count it all as an inspirational effort by people who love deeply. These days, I use music to give back to so many who have shared so much with me. Now I am striding toward the community I once misunderstood and tried to escape from. I did ditch the strange 90s bangs though, I know you were all wondering about that.
This is a still life drawing I did in college to depict the stark contrast between the machinery and medications from objects usually found in a child's world. This drawing got me accepted into art school, to pursue a career in design. At the time I wanted to design Pediatric medical equipment.