Thursday, May 28, 2015

Day 58 - Breathe Bravely Challenge

Finding the beauty in every breath.

Some of my earliest memories as a child are of standing in front of our television, watching MTV music videos, and dancing uncontrollably. I think about how I would spend countless hours bouncing up and down, never able to sit still. Not much has changed: my lack of ability to sit still, my love for music (specifically 80s music), and my love to flail my arms in the air, bounce around, and dance. I've learned to control the bouncing and flailing, and my lungs don't exactly allow dancing like they used to, but I am still filled with as much life today at 28 as I was at the age of 2. 

While it seems in 26 years I have not changed all that much, there is a tremendous amount that has changed in my life. I watch this video and wonder if my parents knew the life that was ahead for them. That just 10 years later they'd be burying their first child because of Cystic Fibrosis, and be forced to helplessly watch it steal the breath of their second child.

When I was born the life expectancy wasn't past 20 years old. I catch myself sometimes thinking about what I could do if I didn't have CF. At a friend's wedding dance a few weeks ago the music began and I had mixed emotions. Could I dance? Could I carelessly flail my arms in the air and jump around the dance floor, singing? Would I pass out? Flashbacks of six months ago were prevalent in my mind. I found myself desperately wishing I could just carelessly dance: no thoughts of not being able to catch my breath, or my heart and head pounding, reminding me of the reality that is my life. I think back on my life and think of all those moments I danced without care or worry. I took so many of them for granted. But then I was overwhelmed with gratitude. So very grateful for just being gifted another day and merely breathing. So, I danced. I danced as much as I could, begging my body not to betray me, to give me just a few hours of freedom from CF. I danced, my lungs always reminding me that CF was present in every breath I took. But I danced and gave a ravishing performance. I dream of the day that I can dance without a care in the world. 

But to be dancing at 28 is pretty incredible. To be breathing is a beautiful gift. To have this amazing life is beyond a blessing. This year I celebrated 28 beautiful years. I watch this video and think about the 17 years my brother, Nathan, had the chance to live. That simply wasn't enough. I think about all the experiences he didn't have the chance to live. I think about all the other kids, adults, families affected by CF. I think of them wishing they could dance without care or worry. I have been so graciously given 28 years: filled with wonderful people who share with me this beautiful dance of life. 

Put some 80s music on and dance with me: celebrating these wonderful 28 years that CF has not won, and for the memory of my first dance partner, Nate. If you have not, please consider donating $28, a $1 for each year of life I have so graciously been given. Please walk with us or donate to Team Ashley: Great Strides - Team Ashley. Love to you all. 

For the 28th day in May, please consider donating $28 dollars to the fight against CF in honor of every year that I've been given: Donate Here

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