Point of View

Music in the Air
by Ron Cole

"That song…I just can’t seem to get it out of my head!"  Chances are, when leaving a Broadway Musical or getting out of the car after listening to one of your favorite tunes, that MELODY is what stays with you.  It’s the primary musical line, the theme of the symphony, the catchy tune that becomes part of you.  You connect to the lead singer, the soloist, the star of the show who makes up the prominent part of your experience.  You cherish the gift of music and performance, often unaware of the months or years of practice and dedication that the performer put into it.  And the cymbal player in the back row, the back-up singer, the alto in the chorus – they are so often overlooked as they support the overall performance.

Our journey with CF began with a normal pregnancy and delivery.  We were thrilled when we left the hospital the next day with our beautiful daughter, Caroline. In her second month, it was clear that Caroline was not thriving.  After what seemed like an eternity of nutritional difficulty, terrible skin rashes, misdiagnoses and uncertainty, Caroline was diagnosed with CF at five months and all our lives took a new direction.  Of course, Caroline didn’t know at that time that she was the star of the show, but we immediately became aware of our roles as her supporting cast.  “Rehearsals” started on day one and Caroline’s doctors, nutritionists, and physical therapist did an amazing job to get us up to speed quickly as we learned to perform the daily routines that would keep Caroline as healthy as possible.  After a few intense months, Caroline’s health stabilized and we are now blessed to say that she is a healthy, beautiful, smart and talented 16-year- old who just happens to have CF.

There are not enough Oscars and Grammys in the world to properly acknowledge the family members, friends and professionals that have been behind us every step of the way.  Over the years, we have come to recognize the great efforts of Caroline’s supporting cast:  the doctors, scientists, and caregivers that have devoted a big part of their careers and expertise;  the Cystic Fibrosis Foundation and its superb management and staff;  the Chapters and sense of community that has grown over time;  the Corporate Sponsors that devote the dollars to our Great Strides.  The harmonies are astounding!

As these years have passed, Caroline has learned from her doctors and from us how to do her treatments and maintain her health, embrace wellness and prevention, and live life as much as possible on her own terms.  Up at 5:15 am every morning while the rest of the house sleeps, she does her treatments, packs her lunch, gets ready and arrives at school on time.  After years of training from all of her “coaches,” she is now playing the principal role and performing it brilliantly.

Each and every CF “star” has a different script, depending on their state of health and circumstances.  In a world in which there is not enough good news, in a way, we have found our CF story to be a source of inspiration, fortitude, great kindness and goodness.  Perhaps one day in our not-too-distant collective futures, we will merely look up cystic fibrosis as an entry in the medical history journals and reflect on all the beautiful music we made together.  ALL OF YOU, TAKE A BOW!