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.
FIGHT CF -
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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