Friday, December 23, 2016

Never Enough

It’s with the strike of a match a blaze of emotion is sparked and dares to undermine the strong will that sets my spirit. As each candle is lit, I see an unmistakable glow flourish in the eyes of those surrounding me. I cannot help but realize the vibrant glow gleaming in their eyes is but a reflection of my own life – its vibrancy, its unpredictable nature, and its unrelenting pursuit to be a light amidst darkness. A glow that with every passing year I want nothing more than to hold onto - to be the unrelenting fire that reflects the untamable life and drive that truly burns vibrantly within every breath.

One More
My 30th birthday was met with an unmistakable weight within my chest – an awareness of the past weeks’ uncertainties with CF, unanswered questions, and most of all, a deepening realization of what this life truly signifies and the deep gratitude I have for the people I am given the chance to love. I cannot help but think no matter the number of years I am given they will never seem like enough. If anything, the magnitude of losing it all only grows. That the fire that burns within me to truly live will never dissipate but only burn more passionately - always wanting just one more day. One more year. One more breath.

As I felt the air pour into the depths of my lungs in hopes of blowing out every last candle, I couldn’t help but be wholly grateful. I knew this moment in many ways should have never been, and in my heart I knew tomorrow would never be guaranteed. In the reflection of the candles’ glow I not only saw myself but everyone in my life who had fought selflessly and tirelessly for me to be given the chance to celebrate this day – my friends, family, selfless strangers, doctors, nurses, pharmacists, and everyone a part of my CF Care Team.

Unrelenting
As I blew each candle out, billows of their existence swirled amidst the air - a reminder of each candle’s lingering presence even after its glowing flame had been stifled. But, there were several candles that forbid to be extinguished – blown out only to vigorously reignite in an unrelenting glow. Trick candles - an innocent mistake but more perfect than ever could be realized. As the candles forbid to go out, I too forbid to let the blazing fire within me be suffocated - especially by CF. May the fire within me will only burn brighter because of it – casting a powerful glow of hope onto every beautiful breath I am given.

I held back tears as my heart filled with the deepest gratitude for this life I’ve been given, the people that ignite my soul, and every breath that renews the glowing embers within me. I will take every beautiful day, hour, moment as they are so graciously given to me - always sharing the vibrant emblazoned life that passionately burns within me. Here’s to the past 30 years and to the endless hope for 30 more. Thank you to everyone who helped make my birthday so special and for most of all, being such an influential part of what makes the fire within me burn so brightly. Love to you all. 

Let the fire that lives within you burn brightly today and every day you are given.

Friday, November 18, 2016

Hope's First Snow

There’s an extra sharpness to today’s November air. I can feel it pierce my heavy lungs as I can sense the presence of a coming snow.  As I look out at the still green grass littered with leaves and the trees standing coldly bare, part of me can’t help but cling to the sweetness of summer while wishing for it to snow.

I don’t believe I’ve ever wished for snow. But this coming snow seems different than those of past years. Deep within me I know this year’s first snowfall will be a beautiful cleansing snow that embraces everything it touches with a quiet radiance and a subtle hope. A hope that gently covers November’s weary and uncertain landscape. A hope that is rooted in the snowy promise that indeed, Spring will come again. I have to believe it will come again.

As I lay listlessly waiting for sleep to come, I can hear the storm’s wind whirling outside my window. As sleep eluded me, I’d get up and look out the window to see if I could see any first signs of the coming snow. I crawled back into my warm and safe bed and just listened – hoping to awaken to a November kissed by the brightest of snows. As sleep drew me in, my thoughts stirred on the Autumn winds of November and the heartache this month always seems to hold. As I think back over these past few years, my heart can’t help but bring me back to the month of November and the defining moments of CF that so often seem to accompany it. But as I think back, that heartache was always followed by the first snow – a renewing promise that spring will come.


I awoke this morning to a heavy glistening sheet of white covering my windows. The snow had fallen so perfectly overnight and it clung mightily to the world– embracing everything it touched with a breathless beauty as if to say all will be ok. As I get ready to face the new day, I know my lungs will sting bitterly from snow’s first arrival. But with every piercing breath I know that I am alive. I am reminded that each breath would not be as beautiful without each November. So, as I step outside and make my first footprint in the freshly fallen snow, I know November will not last and the hope for tomorrow is woven into this first snow. And the most beautiful part? The snow is still gently falling.


Love to you all.

Breathe in the beauty of the first snowfall. 

Monday, November 14, 2016

One Breath at a Time

All it takes is but a single breath for life to become so very real. In a single breath the heaviness of life and its fragility can pour into the depths of the soul. In a single breath lives a reality that is unchangeable, unfair, and heartbreaking. Within a single breath lives my very truth from which I so often times am on a quest to outrun. A truth that every breath I am given does not come without cost or heartache. A truth that is blended amidst quiet embers of fear waiting to ignite into a consuming blaze – waiting silently to steal that very breath and this life I love.

Betrayal in a Single Breath
Without conscious thought I take a breath and without a second thought give it back to the world. I take another. But this one is familiarly different.

I feel a catch as the air pours into my lungs and I grip onto the very breath that knowingly has given me this moment.  My mouth fills with a taste I’ve tried to erase from my mind. My heart sinks and every breath I’ve taken for granted suddenly finds its weight and meaning within my chest. As I rush to the bathroom I already know within that single breath lies the truth I wish I could extinguish. The bright white porcelain of my sink a glaring contrast next to the truth of this life with CF - a truth painted in the most vibrant and unforgettable color of red. The color of blood.

As I clench the sides of the sink with my fingers, a flood of past memories surge through my body. A million thoughts run through my mind and with each breath comes a familiar burning in my throat and the desperate unanswerable questions that ceaselessly accompany this life with CF. I look up and catch my reflection in the mirror - only to be met by the deafening pleas of heartache present in my eyes. The heartache that dwells within the unassuming beauty of the season of Fall. The heartache I know all too well from past Novembers. The heartache that solely belongs to the feeling that my own body is betraying me and all I am. A heartache and betrayal that would only deepen as the episodes of coughing up blood would persist through the week.

Ceaseless Hope
But in that heartache and betrayal also lies an undeniable truth and the reminder of the gift that is alive in every single breath that I am given. Within that heartache and betrayal shines the fragility of life and a truth from which I will never be able to hide. In that heartache lies a reminder of all I’ve been through, what it means to truly live, and a truth built upon unyielding hope. But most of all, it is a reminder that CF is fused to every breath that gives me life. So, with my pleading eyes I stare back at myself in the mirror and whisper the words, “just one breath at a time.” I cannot change this life with CF but what I can do is graciously take every breath as it comes to me – knowing it can all change in a single breath. So, I wait for this November to pass while embracing this season of Fall - breathing into every single breath a ceaseless hope that may smother the smoldering embers of fear caused by CF.

So, I take this life as it comes to me – one beautiful breath at a time. For within this single breath lies not only heartache caused by CF but the culmination of every beautiful moment, every burst of life-giving laughter, every loving embrace, and an immeasurable gratitude for it all. Within this single breath is this life lived beyond all odds – drenched in uncertainty, relentless hope, and endless beauty. I have learned through each season and through past Novembers to take each breath as it may come - clinging to an uncompromising gratitude for every breath that sustains me and ceaselessly believing in the hope of tomorrow. Love to you all.

Take today just one beautiful breath at a time.





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Friday, October 14, 2016

Breathtaking

This life I’ve been gifted?  It’s breathtaking.

I feel it when I first awaken in the morning and as my first steps of the day kiss the cool wooden floor. I feel it when I bound quickly up our steps without thinking of the consequences when I get to the top. I feel it when I step outside and the cool crisp Fall air drenches my lungs. I feel it when laughter erupts from the deepest parts of my soul. I feel it when my present brushes against my past and sparks a familiar current of worry - quickening the beat of my heart. I feel it within the first innocent signs of the changing seasons. 

I feel it when my heart is overwhelmed with emotion and it feels as if there’s an insurmountable weight pressing down upon my chest. I feel it within every meaningful embrace that lingers an extra second. I feel it in the overwhelming beauty that surrounds me and when its life-sustaining gratitude consumes me.

Give and Take
The day is new and morning’s light is pouring through the windows. I take a few thoughtful deep breaths, letting the oxygen pour through my aching body – taking note of each muscle and just how stiff my lungs feel today. I roll onto to my side and lie still for a moment, letting all that has settled in my chest over night begin to shift. I lie there for a bit thinking about the day ahead, searching for the inner spark that will set my steps ablaze for the day. I breathe deeper and more thoughtfully through the piercing pain of my rigid heavy lungs, and I am reminded that cystic fibrosis is ever-present and vying to steal every breath that I am given. It reminds me that this beautiful life is borrowed and each breath I am given is a gift. It reminds me that this life I have been gifted is truly breathtaking.

As the morning sunshine pours through my med-room window, I strap myself into my therapy VEST to fight for another day. Rays of pure sunshine pour through the wooden blinds and illuminate the room in a soft golden light. Warm beams of hopeful light cast shadows across the floor in front of me and across my face. Something catches my eye this morning as I vigorously shake and inhale a dense cloud of medicine into my lungs. Within the beams of sunlight I can see every breath swirling about on the misting air from my nebulizer, billowing upon every exhalation. The very thing that fills me with life dances upon each hopeful ray of sunlight. The beauty is breathtaking while painfully reminding me of the reality that is my life. I take a deep breath, giving it back to the world that so graciously gives me another.

Beautifully Breathless
My hand clenches my chest as the weight of these past weeks and how much they mean consume me. The love, generosity, and kindness shown by my dearest friends, family, and complete strangers is truly breathtaking. Overwhelming emotion and gratitude envelop my lungs, pushing out every last drop of air leaving me breathless. But for a moment I don’t need to breathe, I am enlivened by the gratitude and goodness that fill my life.


When I think of my life it’s truly breathtaking, but it is not the life-stealing CF that that leaves me breathless. It’s the life-giving and awe-inspiring beauty that dwells within every breath that I am given. It’s the presence of unspoken love and the deepest friendships. It’s that life-giving hug that holds on for an extra moment because of a fear it might be the last. It’s the hope we all share for another tomorrow and fighting together. It’s the act of truly living. It's a breathtaking beauty that gives life but never takes it.

I choose to embrace this breathtaking life with my arms and heart wide open, CF and all. From when I wake in the morning to when I close my eyes at night I will forever be grateful, whatever those moments may hold. The gratitude for every breath and the people that make up my life can never be adequately described with words. My gratitude can only be lived, one beautiful breathtaking moment at a time. Love to you all today and always.

What's breathtakingly beautiful in your life?