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 Unsettled Sea of Stability

Within me lies a ceaseless current that fiercely drifts between the unpredictable seas of desperate contentment and self-resolve. It’s a tumultuous tide that finds a constant tension between passionately wanting and expecting more of myself and gratefully embracing all that I have. A strong current is rooted in a reality that lies just beyond sight at water’s edge – a devastating cliff silently existing beyond my view. I am sailing amidst the dark in unknown and unpredictable waters, always cautious of becoming too comfortable with life, as I know the course of life can quickly change.

A Restless Current

The salty seas of CF are steady right now. This past Friday at my CF appointment I blew a FEV1 of 50% (lung function). My last three lung function tests in the last five months have all been within a percent or so of each other. The resounding theme of such a number being the word “stability.” I’d be lying if there wasn’t an underlying current of disappointment. I know, it’s unfounded and ridiculous. So, you must be wondering the reason for such a restless current of disappointment? Shouldn’t I be relishing in the waves of life’s present stability? I should, and there is an undeniable part of myself that truly does cherish these beautiful moments of stability.

But, I crave progress and gain as I feel it distances me from the realities of CF. It makes the existence of CF in my life less harsh and painful. In every quiet moment of stability I feel as if I’m further being pushed out into open water – more exposed and vulnerable. Maybe it’s because I have seen and felt how quickly the unforgiving storms of life can rage - engulfing me in its crippling powerful wake. Maybe it’s because I’ve tirelessly fought for every breath of stability - always consumed not with the question of “if” but “when” another storm will overwhelm me. Maybe it’s because I’ve seen the price I and those I love have had to pay and the changes we’ve all had to endure just to cling to stability - always seeing the reflection of my own disappointment in their faces when I am not able to tell them of any gain. Maybe it’s because within this time of stability I realize more and more what can all be lost. 

Along this journey, harbored deep within me is also a constant guilt. I recognize how incredibly lucky I am - always knowing I could be sailing a very different sea of CF right now. How can I be so wholly grateful for every beautiful breath while still wanting more - desperate for any sort of positive progress? I know there are so many people with CF that would do anything for such stability and 50%. I want calm seas and more beautiful breaths for all of us.

Change

The past year has come with great self-reflection and many life changes. An ever-present desperation to live fully in every moment was working against me. For most of my life I ignored my tired body, constantly pushing harder to try and distance myself from the progressing undeniable realities of CF in my life. As a storm of CF would rage, I’d batten down the hatch and sail myself unknowingly further into the storm, thinking ultimately I would sail through the tumult of CF. But I never fully sailed through, I just steadied the boat – always knowing the seas below me were waiting for the right winds to catch me off guard. And with unforgiving force they did, threatening to quickly capsize me and plummet me into the powerful stormy seas of CF.

But I continued sailing – my fervent sight always set upon the horizon and calm waters. Some difficult decisions were made that January of 2015 and little did I know more would only follow. Those months were incredibly difficult but these days of stability are filled with their own unique struggles. Even within this stability are brutal reminders of the progressive and unrelenting disease of CF within my body. But the most difficult thing that challenges me? Protecting me from myself. I’m constantly trying to restrain myself from easily falling back into the deep seeded belief that I am invincible and unbreakable. I’m constantly striving to keep this ship balanced upon the unfair waters of CF that lie below. To get to this point of stability, it has taken great work and dedication. I know it’s this cautious self-awareness and this strict self-discipline that have allowed these steady tides of stability. I know I will never out-sail CF, but I can do my best to weather each current that I’m graciously given.

Stay the Course

I’m learning to embrace this stability while always charting my journey upon an endless hope and contentment. I must not misinterpret lifeless stagnancy for stability. After all, my life is anything but lifeless. Each beautiful breath is filled with more life than ever. Today I will graciously cling to the stability of 50% all while tirelessly fighting to keep it. Love to you all.



Keep your eyes on the horizon and enjoy today’s steady waters.

A Brave Journey

Bravery. It’s something that quietly dwells within each of us, giving silent guidance to every step we take and each dream inspired. It’s set free upon each breath that is shared upon our lips and embraced within every unknown possibility we take for granted. We call upon reinforcements in our most dire and desperate of states and generously share it with others when they are in need.

A Year of Remembering

As I take a moment to reflect on 2015 I find myself consumed by a single phrase: “be brave.” In one breath a year ago seems so very long ago, foreign, and like a dream. But in another breath it feels like it was just moments ago - that I could still reach out and touch it. The very core of who I am today is bound to those difficult days. Days filled with fear, heartache, disappointment, decisions, and moments consumed by tears. I’d be lying if I didn’t say it is still painful. The hurts stings like icy daggers deep within the depths of my being. At times I am paralyzed by a creeping familiarity that catches me off guard- feelings I’ve tried to banish from my existence. I try and forget such memories and the cold harsh realities of what CF is capable of doing. The recollection of how different today could be and the humbling realization of an always unknown and uncontrollable tomorrow consume me. As those memories vividly flash through my being, I do my best to push them from my mind – running furiously from the consciousness of CF.

Grace & Gratitude

On the other side of that pain is a beautiful grace and the deepest gratitude. Out of life’s adversity and pain comes unfathomable beauty. The life I have been given is more incredible than anything I could have imagined. A year ago I couldn’t have begun to tell you where life would lead me. But I had to bravely forge ahead – embracing every moment life was willing to give and dedicate myself to truly living. To love more deeply, risk more greatly, to never leave anything unsaid, be unabashedly me, be alive in every moment, breathe in every memory, be rooted in gratitude, and most of all, breathe bravely believing in life’s great possibilities. I alone did not do it but by the hands and strength of so many. I cannot fully appreciate my life today, the opportunities I’ve been so graciously given, and the people I love without remembering this past year. This is my life and to be grateful for it I must remember not only the joys but each brave step through the unknown adversities of CF. Each of those difficult days, moments laden with tears, and life-changing trials has led me to this very day, has molded me into who I am, and has given me some of life’s richest relationships and memories. And that is something more incredible than I could have ever imagined.

The pain of a year ago will always be present within me. I’ll always cringe and feel a sharp piercing in my side when it consumes my consciousness. But in forgetting I lose myself. I force myself to be still and open my eyes to this very moment. I quiet my racing heart and mind. I remind myself of the gift that is this very breath. As I find myself facing the dawn of another new year, I am immersed within waves of gratitude and the words, “be brave” reverberating through moments of the past and powerfully resounding within those of the future.

Just like last year I do not know what tomorrow will bring. But the truth is, none of us do. I do know, however, that whatever life offers we must be brave – never afraid to remember the journey that got us to this very beautiful moment in life while living bravely in today. And most of all, we must always be rooted in endless hope for tomorrow’s possibility. Here’s to remembering 2015 and the great possibility 2016 holds. Love to you all as we begin this incredible year together. 

Take a deep breath and hear the words “be brave” within every step you take.