A Spring Storm

As the warm rays of sun cast a gentle radiating warmth upon my cheeks I can’t help but think to myself, “we made it.”  I can feel the sting of tears at the corners of my eyes and I have to tip my head towards the sun to keep the tears from spilling down onto my cheeks. We had made it through winter. Spring had arrived early and I was wrapped within its promising warmth. Spring meant new life, a renewed hope, and an inner peace budding deep from within. Again, resounding within every part of my being were the words, “we made it.” And I believed and celebrated it whole-heartedly.

But I was reminded how quickly the seasons of CF can change. How quickly a spring snowstorm can suffocate spring’s hope – reminding the innocent new life of its unforgiving power. Today, winter’s fury is forbidding to relinquish its control to the peace of spring. Yesterday was a beautiful 60 degree spring day here in South Dakota. Today, we await an unforgiving wintery snowstorm.

Winter’s Song

Upon returning home Monday morning from a most beautiful extended trip to the beach, I had a full afternoon and night of teaching scheduled. Early that afternoon, I went into my studio to warm up and get myself organized for the voice lessons that lie ahead. But something felt different and off. I thought maybe it was because I literally hadn’t sung a note in ten days – the most time I’d taken away from singing in over a year. As I warmed up and sang through a few things, I noticed how quickly I’d run out of air and how difficult it was for me to finish phrases that just ten days ago were simple. Within me I could feel winter’s gentle, yet unforgiving snowfall beginning to drench my being.  As I taught and sang with my students the rest of the day and night, I noticed how starved of breath I felt and how my lungs burned to take in more air than they were allowed.

Tuesday morning between the normal adventures and opportunities that fill my life, I made a visit to my clinic to do a quick lung function test (PFT) - just wanting to check-in and see if there was any cause for concern. I was reminded of the unrelenting presence of winter amidst the beauty of spring. In just two weeks since my last PFT my lung function had dropped 10% to a FEV1 of 40%. So, Penny was called upon. Aggressively, both IV and oral antibiotics were started. The words “we made it” wept silently from the deepest parts of my soul. Disappointment threatened to replace spring’s eternal hope. Disappointment in myself and a disappointment and sadness I feared to see reflected in the faces of those I love. But within that disappointment is still something to be grateful for – I made it five months without IV antibiotics. That’s the longest I’ve gone consecutively in over 3 years. That is truly something to celebrate.

The Hope of Spring

This winter storm’s snow will melt into the earth, disappearing beneath the spring’s powerful sun and renewing warmth. This “storm of CF” will melt away. Today’s snow will give life to the most beautiful of springs. The seasons of CF will always change and its storms will rage but the hope of spring will dwell eternally within me, always waiting to be enlivened by spring’s warmth.

Amidst the pains of CF is the deepest gratitude and love for my CF Team. I am so thankful for each of them - their genuine care, guidance, strength, and reminding me that I’m never alone in this journey.  I'm grateful for my deep love of singing and the gift it gives me to combat CF and know when something is off. I'm grateful for each of you and the beauty of spring you each reflect into my life. Love to you all.

Think spring. 

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.

Champagne Bubbles & Birthdays

Photo by Maren Engel

I stare into my glass of champagne and watch it freely bubble with life as the song "Happy Birthday" dances upon my ears. I wonder if those most comforting and familiar voices that surround me know the weight of such a simple song. With every note I feel the ever present dull ache in the pit of my stomach begin to stir ferociously. With every breath I can feel its stirring panic intensify - bubbling up with every breath of air I graciously give back to the world that lent me the last. For a moment I am lost within myself - immersed within the champagne bubbles that yearn to kiss the air. As I feel that aching stir threaten to overwhelm me, I fight back the tears that brim my eyes. 

Another

I catch Mark's smile reflecting in my glass of champagne. His laugh dancing within each bubble. The dull ache inside of me growing. I wonder if Mark, too, feels that same unspoken dull ache within. That stirring unease about the passing of time and the celebrating of birthdays. I am careful not to look at Mark as I know he'd be able to see the well of emotion and desperation restlessly stirring behind my telling eyes. The desperation to live. The desperation for one more day. The desperation to stop time. I fiercely try and grip life within my salt stained fingers - to hold on to another moment, another day, another year, another birthday, another breath. 

Tears threaten to interrupt the final notes of "Happy Birthday" as each voice moves through me, embracing me with reassuring comfort. Within every stifled tear a moment etched in my memory and on my heart. Each a reminder that this life I live is filled with such goodness. A life I wouldn't trade for anything. That dull ache of stirring panic only combatted by the deepest gratitude that accompanies every breath I take and the deep love I have for the people that fill this life. What I wouldn't give to hold onto this moment forever. 

To 29

This last year has been one I will never forget - in so many respects. Through the very best of days to the most heart breaking I've embraced every moment. I've embraced this life with CF and all that it means. Every single one of those experiences bringing me to today - a place filled with such meaning, so many incredible people, the deepest of relationships, and the truest of honesties. My 28th year was like that of a beautiful bottle of champagne - bursting with life and fullness - more priceless than I could have ever imagined. Yes, every bottle of opened champagne goes flat at some point no matter the cost. But the dancing bubbles do not lose their excitement to kiss the air, they are simply set free, never once looking back from the bottle that used to confine them.

Photo by Jayna Fitzsimmons

Tear off the foil and pop the cork. 

Here's to year 29.

To never looking back. 

To embracing every beautiful breath that I am given - whatever the days graciously bring. 

To honesty. 

To sharing endless love and gratitude with the incredible people that fill my life.

Here's to truly living. With such love to you all. 

Cheers! Pour yourself some champagne and set those bubbles free. 

Finding Your Voice

The voice.  It is the purest reflection of one's self and is the instrument from which our passions pour. It carries our emotions, gives wings to the thoughts that resonate within, and transforms our ideas into purpose.  It embodies the complexity of our entire being, yet it is born out of a simple beautiful breath.  

Defining Who I Am

Singing has been at the very core of who I am for as long as I can remember. Just like CF, it has always been a part of me. It is the very spark that lives within me and renews my soul. While there is truly nothing else that feeds my soul the way singing does, it isn't singing itself that has made my life so incredibly full.  It is the people I have gotten to make such amazing music with and the act of lending my voice to something greater than myself that truly gives meaning to my life. For the last 10 years I have passionately drown myself in studying music: receiving my bachelors degree in vocal music and currently pursuing the last months of my masters degree in vocal music. It hasn't been easy by any means, but the reward and inner joy I get from feeling the air pass through my lips and the song of my heart being painted upon each breath is incomparable.  To be honest, my ability to sing has always meant that I am still alive both physically and mentally.  It has represented that CF is not winning: that I am stronger than CF. Of course, CF has made singing difficult at times, but that just means with each painful breath I know I am alive.  It has forced me to treasure those moments when my body feels "normal" and the air seems to just flow from within.  But it has also made me fight even harder through those moments I feel powerless and as if CF is trying to destroy the song of life that sustains me. The entirety of who I am has been defined upon my voice and my pursuits as a musician. So what do you do when that very thing that has defined you is torn from your life? When that very thing that feeds your soul and gives you life seems merely impossible?

Sing A Song

I sang for the first time in over 5 months just a few weeks ago. There's nothing I've been mourning more these last few months than the loss of my voice. For much of that time it was difficult to speak, let alone sing. There's nothing I wanted more desperately than to just merely open my mouth and have a note escape from my lips. Not only was I desperate to breathe, but I was desperate for the song that lived within to be freed again. I always knew my voice would be undermined by CF sooner or later, and ultimately be devastated because of it, but I never could have prepared myself for the heartache and loss I've felt over it actually happening. It seems I've had to relearn just how to simply breathe again, not to mention sing. But, I am singing again. I know it will never be the same, as this last CF battle has left my body so different. But I am singing and that's all that matters. Whatever the future may hold, the voice within me will always continue to sing, it just might be a different song. 

1 Year

Regardless of what CF has stolen from me, the song within me will be ever present.  I will forever be finding my voice, in whatever medium that may be. A year ago I published the first entry to this very blog. Little did I know what would lie before me. I had started the blog as a way to allow those I know and love into my life and see who I really am: to unveil a part of me that I had hidden from the world my entire life. It had become more and more impossible for me to keep hiding and running from the realities that are CF. This blog is not about me, and I realize that even more every day. It's about all of you: about the goodness, the love, and the endless support you have all shown me. That my voice's purpose is to reflect the beauty that is so present in every breath I am given. 

I've always defined myself by the use of my voice: the expression of the song that lives within me and that illustrates my life. I am realizing that I have not lost my voice at all, but instead it is just being used differently. That finding my voice is merely looking inside myself, breathing bravely, and sharing the song that fills my soul in spite of CF. 

Thank you to each and every one of you for being a part of this incredible journey with me: for believing in me. I am left humbled beyond words and filled with endless gratitude for each of you. My life is so beautiful, and I am truly thankful for each beautiful breath that I have been given and each song I've been able to sing.   Love to you all.  

Sing it, shout it, write it: breathe bravely and find your voice. When you find it anything is possible.



Tomorrow is April 1. Are you ready? 
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