Impossible Firsts

I remember the first night I was alone in a hospital room around the age of seven. I remember crying myself to sleep and begging my mom not to leave. I remember blood draws, failed IV starts, and the feeling of the cold vinyl against my skin as I lie against the sterile exam table. I remember counting the ceiling tiles and listening to the sound of my own breathing - something I still do. I remember the feeling of the unwelcoming cold tile floor barren below my feet in my hospital room shower.  I remember the whooshing and clicking sound the door made as it closed and opened.

I remember the first time I told Mark about CF and the ceaseless determination in his eyes. I remember the first time I coughed up blood and the terror that pierced through my body. I remember for the first time being truly terrified of the power of CF and the destruction it could cause. I remember the first time realizing my lungs were starving for air. I remember the first time the words “lung transplant” were said to me and the burning disbelief that such words were possible. I remember the first blog post I ever wrote and the life-changing truth that filled each sentence.

My life is filled with many painful firsts that have molded me into the person I am today. But my life is also filled with the most beautiful of firsts:

Beautiful Firsts 

I remember my first slumber party. I remember my first day of kindergarten and climbing the three big steps onto the school bus. I remember the first time I jumped off a diving board and rode a bike without training wheels. I remember my first voice lesson and the first notes I played on my piano.

I remember my first kiss. I remember the first time I stood on the stage on opening night. I remember driving my first car and learning how to drive a 5-speed. I remember my first prom and the best friend that made the night so memorable. I remember saying my first real goodbyes to friends as we graduated from high school. I remember the first time I said, “I love you” and the butterflies that filled my stomach.

I remember looking at my first apartment. I remember my first conversation with my college roommate and the way of her smile and how it created a crease at the corners of her eyes. I remember my first day of college. I remember my first time in Paris and eating jambon et fromage baguettes on the street. I remember tasting my first alcohol and the morning after. I remember my first week of finals and my first spring on campus.

I remember looking down for the first time at my left hand and the sight of my engagement ring. I remember the first time I saw Mark on our wedding day and the color of his eyes. I remember the first dance at our wedding. I remember buying our first house and the beautiful dreams that awaited. I remember bringing our first dog, Cooper, home and making us a family.  

This beautiful list could endlessly go on. In all honesty, though, would all these firsts look as sweet to me if not for CF? While my life is filled with many beautiful and heartbreaking firsts, the most beautiful thing of all is that I can share them with you. By all odds I shouldn’t be here and by all odds I shouldn’t be breathing. By all odds CF should have stolen every last beautiful breath long ago, along with so many firsts. But it hasn’t. 

Because of you

I owe each of these firsts to you. No, really. I am here because of you. I am here because you weren’t willing to give up. I am here because you believed in this fight and the beauty in every breath. Does that mean there aren’t difficult days ahead? Of course, not, but we continue to press on with unfaltering hope for the opportunity to create more beautiful and memorable firsts. While I have lived a life filled with the most incredible of moments, there is so much life I have yet to live.  I am here because of your support, and the life-saving drugs and therapies developed by the Cystic Fibrosis Foundation. Without their relentless drive to research and drug development, many of us would not be here today. But what’s the most humbling part of each life-extending drug I take? None of them would be possible without you. Truly.

More Impossible Firsts
So I ask you from the bottom of my heart and from the depths of my scar ridden lungs to join me in the relentless pursuit for more beautiful days filled with impossible firsts. We are so very close to a cure but we are not there yet. Continue this fight not for me but for the parents, families, and friends who yearn to celebrate so many firsts and beautiful moments with their loved one with CF. 

Walk with me for Team Ashley in Great Strides for CF on June 4, or find a Great Strides/team to support in your city! Show your support not for me, but for all those whose lives have been touched by CF. Love to you all.

Sign up or donate 

to Team Ashley:

 http://fightcf.cff.org/site/TR/GreatStrides/80_Minnesota_Minneapolis?pg=team&fr_id=4825&team_id=50338

Team Ashley

Great Strides for CF - Cystic Fibrosis Foundation

Saturday, June 4, 2016

10 a.m.

Spencer Park . Sioux Falls, SD

Help be a part of a beautiful future filled with so many firsts. 

Please note that donations made to Team Ashley go to The Cystic Fibrosis Foundation.

The Gift of Sight

Gifts come in many different forms and often by means we do not expect. But, in everything there is beauty – we just have to see it.

As I looked down at you, beneath my breath was an abundance of tears I dare note let overtake me.  Within every tiny breath I saw the most perfect grace. A grace I could only hope to share with you through my loving arms that held you. I love you already because you are a mere tiny reflection of the dearest people who fill my heart.

I take a long and slow breath as to keep the tears and torrent of emotion from overwhelming me. I think to myself, “I thought I might never get to see this day.” And I close my eyes and whisper the words, “thank you” – stitching them upon the breath of a silent prayer.

This scenario and these words have resonated within me many times in the past year, each time with even more gratitude to be present and alive.  Each time, wanting more desperately to hold that moment and its beauty in my hands forever. Each time realizing what a true gift I’ve been given.  There are few more cherished and treasured moments in my life than these occasions. I relish in these moments and my heart and mind wander down a path of remembrance. A place where the deepest appreciation lives for the beauty that fills my life and the grace that has brought me to this very moment. A place in which I know could be so very different or cease to even exist at all.  

A Priceless Gift

Cystic Fibrosis may remind me daily of the things it has stolen and dares to rip from my life, but CF has also given me something so very priceless. It’s given me the gift of sight – an awareness that grounds me to the beauty that lives within every breath and fills every moment. The gift of sight that opens me to a world many do not take the time to see and appreciate. It’s hidden beneath the fullness and chaos of our busy lives. It gets lost beneath what seems ordinary.

But I truly see so very much – and it is a gift. 

What I See

In this life I may not have been given the gift and title of being called, “mom” (at least by something that’s not covered in fur, barks, and walks on four legs), but I’ve been given a gift so very beautiful in its own right. I have watched my dearest of friends become mothers. I’ve watched my friends grow in the most beautiful and honest of ways. There were several times in the past couple of years that I feared I would not be here to witness such a thing – making each of these moments more special beyond words. 

As I look down at you, I see your tiny delicate fingers and hands – so full of unassuming possibility. I see the gift you are to all those who will love you. I think of your beautiful mom and the irreplaceable gift she is in my own life and what a gift it is to see her be your mom. The world is yours, little one - breathe bravely.

Love to all the beautiful and impactful women who have shaped each of us into the people we are today.