To Have and To Hold: Living and Loving with CF

Time, it is a gift that is unassumingly stolen from us with every breath we take. It silently turns summer into fall, moments into memories, and days into decades. We wish it away while desperately clinging to it- hoping to grip it tightly within the safety of our entangled fingers. But time is not ours to keep – it’s untamable and the very currency for which we trade to write the story of our unique and beautiful lives.

Love & CF

Eight years later I can still feel the words brushing against my lips as I said, “to have and to hold from this day forward.” Forward. If only we truly understood what “forward” would mean and how time would become the most precious thing we shared. I think back to the day of our wedding and how excited we both were to see what the future had in store for us. How nothing seemed impossible. But that excitement was forced to change into a deep silent hope - burning in place of our love’s original expectation. As we find ourselves celebrating another year together, I find myself thinking of how much our lives have changed. How much we have changed. Or, most of all, how much the realities of this life and the constraints of time have changed us.

At times, that change within us is all too apparent. Even more so, at times it is too difficult to fully acknowledge and it’s easier to merely exist within the comfortable shell of living in the moment – attempting to shield ourselves from that in which has changed us and the uncertainties of a love laden with cystic fibrosis. We dare not dream too far into the future or hope too ambitiously for the pain we might face seems unbearable because the tomorrow we wish for may not look the way we had dreamed: a future in which CF silently existed amidst our full and limitless life together.  So, we learn to survive with the life and love we’ve been given.

Survive
We survive by living in the moment: taking the days as they come for the goodness that they are. We own those moments. They are all ours and can’t be stolen from us. Within those moments lives an unspoken belief deep within both of us - a desperate wish that we are the keepers of all time and makers of each moment. It’s a way in which we cope with the realities of the life we’ve been gifted. For time is against us and threatens to unapologetically challenge the love and dreams in which we naively set our life upon all those years ago. If we live in the moment than the inevitable difficulties of the future seem impossible. Our life together feels untouchable. In that moment, all we need is what we have: each other. If we live in the moment it numbs the pains of forced changed and deafens the tick of unyielding time. In that very moment there is no sadness, disappointment, or pain- only the love we have for each other and the gratitude for this life together.

Forward
But life is meant to be lived moving forward – inhaling every beautiful breath that is gifted to us and endlessly hoping for more to share. It’s meant to be unabashedly dreamed, even if those dreams are forced to change. Even if we change. This life together might not be what we had originally envisioned together all those years ago, but the only thing that truly matters is that we’re doing this life together – writing our own unique story, loving without regret, learning to live fully in every moment we are given, and take these beautiful days as they are given to us. For today is undoubtedly the best day of our life together, as was the day before, and the day before that. Here’s to another year together and fully living and loving in each beautiful moment while believing in the beauty and hope of tomorrow. Love to you, my Marky – the one who has never questioned our life together and this ever-changing journey we are on.

Love to you all.

How has your life and love changed?

To Beautifully Belong

The greatest of human contentment is found not in the world around us but within ourselves - in a deep self-peace that is reflected within the beauty of truly knowing that we are enough just as we are. Knowing that we truly belong. Knowing that it is the very uniqueness of our journey that gives meaning to every breath we are given. 

Realizing such contentment and self-peace is a continuous journey. And at times, one that can be painful to endure and filled with adversity. We are in constant search of finding where it is we belong – questioning the beauty within every breath we are gifted. We unknowingly cling to distraction and immerse ourselves in the world’s chaos - a means in which allows us to live blindly within our own lives and avoid looking inwardly at the state of our own selves. Allowing us to numbly exist all while sacrificing our beautiful and authentically unique spirits. We cling to the stability of chaos and distraction - never able to find the place of quieted true contentment within ourselves, scared and unable to see the beauty in our own unique journeys.

A Quiet Stillness

As I sit beneath the expansive summer sky my mind wanders as it often does. There’s a sting of sadness that often surfaces when I’m left alone in such a quiet state of mind. It’s the silent side of CF. It is a plague unto my mind and heart when all is still. It appears when I am not consumed by the world’s chaos and engulfed in my own subconsciously created distractions – every minute given to something other than myself as a way to deny my own reality and cope with an ever–growing discontentment created by CF.

There’s a quiet stillness about this summer in comparison to other summers. Or, maybe I am just seeing my own reflection a bit differently in this season of life– acutely aware of time, purpose, and contentment. In such quietness lies an intense restlessness. A restlessness that is knowingly rooted in the silent side of CF and the uncertainty it perpetually stirs within the deepest parts of my being. It’s a restlessness born of stillness, the passing of time, inevitable change, and the uncontrollable circumstances of my unique journey with CF. But most of all, it’s a restlessness that disrupts my inner peace- making me question where it is I belong and the beauty of this unique journey I’ve been gifted.

Beautifully Enough

As times passes I realize more and more how different all of our journeys are. And seemingly I realize just how lonely this road less traveled can be. There’s something special in the sharing of what is familiar between people- an unspoken bond and deepness. It gives a reassuring sense of belonging and understanding. The pang of sadness comes not in living this unique journey I’ve been given with CF and all that comes with it, but it comes in knowing I will never fully share life in the same way with dear friends and family. The sadness comes when I realize that my journey will always seem so very different. So, I do my best to quiet this restlessness. Not by immersing myself amidst distracting chaos like I desperately try to do so often, but by sharing my honest self and most of all, listening. Hoping to vibrantly live and experience life not only through my own unique journey but through the beautifully different journeys of all those who fill my life.

I look to the summer sky and breathe in the warm air of my favorite season, a wash of reassuring contentment fills my quieted soul. 

Life fills my soul. 

In a brief renewing moment I am reminded that it is in our own uniqueness that we truly belong. That self-peace is found within the most honest parts of who we are – rooted in gratitude for the life we have each been given. Rooted in knowing we are beautifully enough just as we are. Rooted in the truth that it is through sharing each of our different journeys we truly live and experience the beauty in every breath. Love to you all.

Take a deep breath and look to today's summer sky. Fill your soul with the peace of knowing you are truly enough and this unique journey you've been gifted is breathtakingly beautiful. 

A Search For Words

There’s a bit of fear that inhabits every truth that makes up who we are. It’s a fear that is shared within every honest breath we give back to the world and undermines the self-assured faith we hold within ourselves. 

It inhabits a small but powerful place within each of us and is fed by self-doubt and a relentless search to find the perfect words that may bridge the gap of indifference. Such fear dwells within our inner dialogue and stems from the very core of what makes us who we are – that in which we feel makes us different. We keep silent because of the fear that we might be misunderstood or that our honesty will bare only our weakness. Silence protects our hearts while stifling the voice that threatens to expose our vulnerability.

An Ever-Changing Journey

It was a difficult decision to finally open up about my life with CF and let those I love and the world in, but I had little idea that the most difficult thing would actually be finding the adequate words to do so – to make it understandable, embraceable, yet most importantly, relatable. To not create a platform for pity but an avenue for empathy that extends far beyond myself. How can I relate a universal feeling or experience to this life I’ve been given with CF? How can I translate this ever-changing experience into words that may connect with the heart and lives of those in which I’m sharing? Not to expose this life I live but to honestly share this beautiful life I am gifted - showing that the details of each of our lives may differ but that the difficulties we face, the beautiful moments we celebrate, and love we all feel are rooted in the same breath that sustains each of us?

In this life with CF there are often more questions than I have answers to and a small but powerful inner fear silences me from voicing my own self-doubts, and the ruminating questions that stir within me. In such self-doubt and questioning I feel most vulnerable. 

“What if the right words escape me?” 

It’s something I’ve always struggled with - finding the words to translate the embodiment of CF and its effects to those I’ve entrusted to be a part of this journey whether it be the closest of loved ones or my CF Care Team. I realize there are no “right words” to accomplish such a task, only a life that exudes honesty and is built upon gratitude for every beautiful breath. Within each one of those gifted breaths is a fearful vulnerability that challenges my initial inclination to retreat within the safety of my silence and perfected façade. But I relentlessly continue to search for the right and honest words, knowing that each one ignites hopeful possibility that can only exist within the unique vulnerability that makes me truly who I am.

The Right Words

Each day we are each given a choice: to be defined by the small yet silencing fear that dwells within every breath we are gifted, forever searching for the right words. Or, we can live in a place of hope-filled vulnerability that openly gives empathy the chance to thrive – trusting that the right words will always be present within each one of us.  Love to you all.

What perfect words are you searching for?

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.