May is Cystic Fibrosis Awareness Month and One Little Girl Sings, "Let It Go"

When I learned my granddaughter Ava had cystic fibrosis almost five years ago, I felt like I had been punched in the gut. My daughter had just given birth to her second child (thankfully he did not have it). How would she manage caring for a new baby and meeting all of the demands of her daughter’s disease? What would happen to our darling little granddaughter? No matter how much I read (I filled a huge binder), nothing answered these questions.

Somehow everyone acclimated to a new normal.  Ava learned to swallow countless “medicine balls” (enzymes) and other medications, much preferable to having to eat them in applesauce. She grew used to doing her “jiggle vest” and using her inhalers. And my daughter adjusted as well, adding two new dogs and another little brother to the chaos.

Ava is among the 4% of people with CF helped by Kalydeco, a new medication that targets the root cause of her CF genetic mutation. She had been relatively healthy prior to being diagnosed. In this way, she is a lucky little girl. So far, she is thriving since she started taking Kalydeco almost 2 years ago.

Like many little girls, Ava became a devotee of the Disney Princesses. For many years, Belle was her special friend. It made sense. Like Ava, Belle is smart and brave, not afraid to confront the beast. Recently, Belle was unceremoniously dumped for Elsa from Frozen.

I wondered why the character of Elsa and her song, Let It Go, were powerful enough to supplant Belle. When I heard the Academy Award acceptance speech by the song’s writers, Kristin Anderson-Lopez and Robert Lopez, I understood. After their clever rhyming thanks came these words addressed to their young daughters, straight from a mother’s heart:

“[Let It Go] is inspired by our love for you and the hope that you never let fear or shame keep you from celebrating the unique people you are.”

Now I totally get Ava’s obsession with the song. It speaks not only to her bravery and fearlessness in the face of living with CF. Like Elsa, Ava has learned to accept her condition and celebrate her uniqueness. When she belts out Let It Go, she really feels, “The fears that once controlled me can’t get to me at all.”  I can’t help tearing up every time she sings,

Let it go, let it go
You’ll never see me cry
Here I stand
And here I’ll stay
Let the storm rage on
The cold never bothered me anyway!

This Sunday, May 18, our family team, Ava’s All-Stars, will be participating in the Great Strides Walk, the largest national CF fundraising event. The Cystic Fibrosis Foundation is an awesome organization that raises and invests hundreds of millions of dollars to support the development of new CF drugs and therapies.  Research is helping to develop other promising new drugs, and almost all money donated to the Cystic Fibrosis Foundation goes directly to fund this research.

Please help add tomorrows to the lives of those living with cystic fibrosis. Support Ava’s All-Stars as our team walks to raise funds. Our hope is that all people living with CF can sing at the top of their lungs, Let it Go! Will you join us?

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