I don't have a musical bone in my body. And yet, music is very important to me. I could tell you the name of the song that my husband and I listened to on our first date, and I smile every time I hear the song we danced to on our wedding night. And that song that played on the radio while we drove to my son's first cystic fibrosis appointment -- yes, I remember that one too -- still haunts me.
To this day, all I need to hear is the first few notes, and suddenly I am transported back to that exact moment in time. It doesn't matter where I am or what I am doing, the flood gates open, and a tidal wave of emotions washes over me.
Like his mother, Sean enjoys listening to music as a way to contemplate life.
For this same reason, I find numbers equally fascinating. As a mother of a teen with CF, they are fundamental to how I perceive the world. For example, 31 was the life expectancy given to my son the day he was diagnosed, and 13 is the number of medications he takes every day, as well as the number of times he has been hospitalized. Because I am a mom, I force myself to look beyond these values.
Take my son's life expectancy. Because of the progress of modern medicine and the Cystic Fibrosis Foundation's commitment to a cure, the median predicted survival age is now around 40, increasing an entire decade since Sean's diagnosis. It is important to remember that this number only pertains to CF adults born 40 years ago. We do not know the true impact that medications such as TOBI®, Kalydeco® and Orkambi™ will have on the younger members of our community. Suddenly, numbers like 41 and 13 no longer have true empirical value to me. Instead, they serve as placeholders.
Our community is defying expectations as people with CF are living longer and healthier lives. This past year, we reached a significant milestone: Adults now make up over half of the CF population. Even more poignant to me is that, in a few short months, my son will join that statistic.
No longer a fair-haired, chubby-cheeked toddler, my son now shaves every day and is tall enough to look me straight in the eyes. In every sense, the CF Foundation has literally changed the face of this disease.
A senior in high school, Sean is applying to colleges all across the country and trying to figure out his career path and future. He has told us that he wants to be a doctor and help children like himself one day. In every sense, his words are music to my ears. Regardless of what he chooses to become, I am simply grateful that he has the opportunity to make these choices. Even better, I know there are many more exciting decisions to come: what graduate school to attend, where to get married, how to celebrate graduations and promotions, and even when he would like to retire.
Sean is determined that CF will not stand in the way of any of his goals.
Knowing myself, I will be watching from the sidelines and carefully listening to find new songs in which to associate these moments in his life. And I will credit each and every one to the miraculous gift of medical science. Without a doubt, the CF Foundation is the background music of my life.
