Realizing Hope: The Lives of Those I Love (Day 23)

Little do we ever realize just how much we want to live until our life seems to no longer be ours to do so. At times, a disease like cystic fibrosis has the ability to make an individual feel like the life they love so much is no longer their own. It progressively permeates every moment of our lives, and its realities find themselves silently reflected within the most beautiful and bitter moments. Some of those moments I carry with me every day, and they’ve defined the ever-changing narrative of my life.

The truth is, in every beautiful and meaningful moment, the thought of CF can’t help but permeate my consciousness. There’s a heaviness within every moment that causes me to want to clutch my chest in an overwhelming gratitude and silently plead to know a future filled with such beauty and the people in which I share those very moments. My fear of CF has never been about the mercilessness of the disease and its unforgiving realities, but has always been about missing out on the lives of those I love. I become breathless as every muscle within my chest becomes tight with emotion. In those moments I plead with this body for more time while drawing in every ounce of beauty I can fit within every breath this body will give me. 

Prayerful Tears of Hope

This weekend I sat across from one of my best friends as we stayed up late talking and laughing for hours as we’ve done many times. I couldn’t help but think of how grateful I was to have the gift to be a part of her life and see the person she has become. Over the years I've learned that one of the most beautiful gifts is watching those you love become the people they are meant to be. And, most of all, it’s such a gift to be a part of that journey with them. As I sat across from her last night, I couldn’t help but think about how just a few years ago we had sat together in a similar way holding back tears in a hospital room - filled with a heartache of an unknown and unfair future. She had left her thirteen-month-old daughter, whom is also my goddaughter, at home as she came to be with me for the day. A day shrouded in an impenetrable reality of CF and time we suddenly felt was truly finite. A hope, similar to the one that lives within my heart still today, found itself in the form of prayerful tears upon my cheeks. A hope that I might see my goddaughters grow up and change the world. A hope that I might be given the gift of watching my friends become the people they are meant to be and grow through every season of life, including becoming parents. It’s one of the most beautiful gifts  - to watch those you love live a beautiful life. But, it’s even more beautiful when you get to be a part of it. 

The Beautiful Season of Today
Ruby, my goddaughter, is six years old now. I feared I’d never see her within this beautiful season of her life, nor did I ever expect the opportunity to love her little sister, Paige, just as much. As I sat across from my dear Kendra this weekend and all those years ago, I couldn’t help but feel immersed in a breathtaking gratitude to be a part of her life and again be given such a beautiful moment.

As I stood in the kitchen this weekend surrounded by the girls and my dear Kendra, popping my morning dose of Trikafta out of its packet into my hand,  I couldn’t help but be filled with a hope that I might know this same beautiful moment through every season of the lives of those I love. In that moment I was filled with a humbled awe born only of a realized hope. A realized hope that for the very first time has allowed me to feel that the life in which I’ve always wished to live is indeed my very own. Cystic fibrosis will forever be reflected in the most beautiful and bitter of moments in my life, but I can only hope those moments inspire a long lifetime of gratitude reflected in the lives of those I love. Love to you all.

Feeling its Effects
- Day 22 - 

I spent the weekend laughing more than I have done collectively in years. There was a freedom that lived each laugh that I only can remember feeling more than a decade ago. It permeates every cell of my being and makes me feel more alive than I have in a long time.