A blog about my beautiful life living with Cystic Fibrosis: to educate and help promote awareness and understanding associated with CF.
Dedicated to sharing my experiences of the good, the bad, the ugly, and the funny, so that all who so eagerly support the fight against CF, will know how much their love and support truly means.
I close my eyes for a moment to try and keep the
tears from falling, that somehow I can keep these subtle tears from turning
into the "ugly cry." I take a breath hoping that it will remain
smooth, calm, and steady. My hand moves towards my mouth, touching my fingers
to my lips as to hold in any overwhelming emotion. For once I begin down
such a path, it's hard for me to regain my composure.
When I look at my life not only am I overwhelmed by
the beauty that surrounds every breath, but by the generosity I have been shown
by the incredible people that fill my life. I simply have no words for the
amazing generosity and kindness I have been shown. My heart is filled with the
sincerest love and gratitude for each of you. My greatest wish is for you
each to see how much your goodness has impacted my life, how each of you is the
beauty on which every breath I take is built. I hope that I may so live a life
worthy of the graciousness you have each shared with me: that I may so impact a
single life the way you have impacted mine. Love to you all.
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
I shall not merely tell you my dreams, but show you
and make you a living breathing part of them.
There's no lie that CF has affected my dreams, the
pursuit of them, and my ability to see them through. There's no lie that CF has
forced my dreams to change. But little did I know that they would transform
into something greater than I could originally envision. CF has made
me more determined, more tenacious, and more accountable to my dreams. My
dedication is the simplest, yet greatest thing that I can share of my self: I
am only as strong as the word I give and the actions I execute. If I say
I am going to do it, I am going to do it. Never will CF stop me from realizing
my dreams and pursing them in whatever way I can.
The most incredible thing, however, is the
realization that none of my dreams would come to fruition if it weren't for the
amazing people my life is composed of. Without each of you, no dream is
possible. Without your kindness, support, and endless grace my dreams would
simply live in my heart and head, but not come to be by my hands. They'd just
be words without life. Thanks to each of you they are living, breathing, and
flourishing. Thanks to you my words and dreams have wings and are able to take flight.
An incredible gift to come
into my life is an amazing woman who has showed me what it means to live with
purpose: not to just tell of your dreams but to live them passionately. Stephanie,
an incredible visionary for Say Anything Jewelry is
passionate about creating lasting memories through her impactful
business.
Graciously Stephanie created a custom
Breathe Bravely jewelry line where 40% of proceeds go to the Cystic Fibrosis
Foundation. I am so very grateful. I am excited to share the new pieces added
to the Breathe Bravely line today. Remember, each is hand made and as unique
and beautiful as you. Click on the link to view and order your
piece:Exclusive Breathe Bravely Jewelry. Love to
you all.
