According to Pythagoras, the universe is ruled by numbers. I know they definitely rule mine.
Between the number of essays I grade for my job as a teacher, appointments, bills and the limited number of hours in a day, the overwhelming sense of managing and delicately balancing life's numbers can be, well, overwhelming. My son Alex, however, must experience this feeling more than most of us could imagine. After all, he is living with cystic fibrosis -- a life completely managed by an endless series of numbers.
The numbers of Alex's CF life began in 1995 with a nagging memory of a nurse handing him to me saying, “Oh, don't worry we don't lose babies anymore. He will most likely graduate from high school; he'll live into his 20s.”
As Alex's life continued, his numbers also grew and changed. They now include key numbers, like:
- 6: the hours required for daily IV treatments and therapy
- 19: the staggering number of hospital admissions and PICC lines he has endured thus far
- 92: the number of days missed in a given school year
- 36: the daily count of pills he ingests
- 2: the number of prom nights he fought to attend and danced like there was no tomorrow
Yet through it all, the number one remains symbolic. It's the number of lifetimes my son has, and the number of lifetimes that my husband and I have vowed to spend doing everything we can to bring about a cure for this disease.
Over the years, Alex grew -- alternating between home and hospital, sick and well -- but was always battling. He learned to swing a t-ball bat, run the field in soccer and of course, treat the basketball court like the football field I forbid him from. It was in sports, though, that we found a balance -- an equilibrium of numbers -- as the statistics of his seasonal sport overshadowed CF. Scoring baskets and home runs seemed to calm the CF storm, while his rushing and passing yards in flag football eased the tide of declining numbers elsewhere.
His teen years brought bigger challenges -- alarming challenges -- such as prescription-drug resistance, 5-to-6 week long hospital stays and school work we could no longer help with; it all offered a frightening glimpse into his future. Where would my son's path lead? What numbers would govern his future, and would those numbers be limited?
Before leaving for his freshman year in college, Alex and I had a heart-to-heart, mother-son chat during which he told me that he wanted to make a difference. While unpacking his dorm room, I found his bucket list and, quite simply, it took my breath away as I saw that item number one was, “Live a life of meaning.” Little did he know that his life means the world to me.
I don't know how much Alex thinks about his own mortality. I don't know what his mind says when he bows his head for those few extra seconds beyond the rest of us at the dinner table. But, I do know that life goes on and we have the ever-evolving science and research of the Cystic Fibrosis Foundation to thank for that. As the science of CF continues, Alex's life goes on.
Right now, in a life of numbers, Alex's is 22 -- but who knows what the future will hold. Because I know that I am here to ensure that one day, we will celebrate the number zero: the number of lives claimed by cystic fibrosis.
