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 30^th 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.

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?

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. 

The Artistry of Being Honest - Part I

There’s a unique artistry in which we each live our lives, a way in which our journey poetically unravels itself. It is rooted in an unchangeable honesty born of every brilliant breath that we are given.

But there are parts of that honest artistry that we each try to hide, to diminish, to silence. We fear it is what will show our weakness, what will define us. Most of all, however, we fear its exposing vulnerability. We hold our breath and fight back tears hoping to keep such honesty that dwells deep within from escaping.

A Restless Truth

I still awaken every morning to an anxious stirring within me. As my eyes meet my reflection in the mirror at the break of each new day I have the same wave of restlessness wash over me. I brace myself against the vanity sink, taking in a thoughtful breath while trying to shake off the uncertainty that threatens to write its way into my mind. I remind myself as I look into my own tired eyes, “this is my life and this is my truth.” I continue on through my morning treatments, cocktail of pills, and getting ready to embrace the awaiting day while repeating that simple, yet honest phrase, “this is my life and this is my truth.”

What is woven within that restlessness? A choice I made almost two years ago to share my honest life, to embrace all that I am. At its very core is an unrelenting restlessness that comes from my life with CF and the decision to openly share it. I think about how that decision has impacted me in both positive and in difficult ways. I think about how that decision has given but also taken parts of my life. In positive ways it is reflected in a powerful support and belief by those people that anything is possible in-spite of CF. It is reflected in an honest freedom. In difficult ways it is reflected in being defined as different, incapable, and only seen for this invisible illness. There are moments within each day that I am reminded about that decision and how it has influenced that given moment in my life. In conversations, opportunities, and relationships that decision stares back at me challenging me to embrace this artistry of being honest and to see its true unique beauty written on every breath.

To Truly Live

At the end of the day as I look at myself in that same mirror I began my morning, I remind myself, “this is my life and this is my truth.” Memories of people I love, conversations that have filled me, and those moments that reflect how beautiful life is remind me of how this honest life and that decision two years ago has given more than it can ever take. I do not doubt that I will wake tomorrow morning with the same wave of restlessness and anxieties, but I know for certain this honest life has allowed me to be rooted in the deepest gratitude and leave nothing unsaid. At the close of every night, I know I’ve lived without regret, loved deeply, and given endless gratitude for every beautiful breath - all because of the artistry of being honest.

Honesty defines each of us differently. It manifests itself within us uniquely and is shared through the artistry that is our beautiful life. Breathe bravely and share your honest life that comes from within you. Is it always easy? No, but the most meaningful artistry resides in vulnerability. Your honest life reflects you – the most beautiful truth. 

This is your life and this is your truth. Embrace its beauty.

This is Part 1 in a several entry series dedicated to sharing my honest life. 

An Exchange of Grace - Guest post written by Kathryn Timpany

 "When the student is ready, the teacher will appear."                 
- Buddhist teaching

Many of you have known Ashley much longer than I have.  I met Ashley and Mark when they began attending the church that I pastored just a few years ago.  We soon discovered we shared a love of vocal and choral music.  And since I was diagnosed with Chronic Fatigue Syndrome eight months ago, we have discovered that we also share the journey of living with a body that refuses to bow to the sheer force of will.

Like you, I have been inspired by the chronicle of that journey Ashley has shared in this blog.  When she invited me to write an entry, I felt honored and a little bit lost.  What had I to offer that would add to the circle of care that is comprised of those of you who have accompanied her much longer and more closely than I have?

Soon after I accepted Ashley's invitation, this well-known ancient saying placed itself front and center in my mind, and I knew what I wanted to share.  Ashley has become my teacher, appearing in my life just when I was ready to learn what she had to offer, and I am deeply grateful.

The world we live in rewards success and strength.  Our favorite verbs are thrive, achieve, overcome, triumph. We compete for primacy everywhere we turn.  We hail our heroes.  We reward winners and pity losers. We are schooled for glory, and shamed for failure.  And even those of us who find sustenance in spirituality talk about doing it "right".  No sloppy life of the spirit for us!  No pesky doubts, no awful absence or dreadful silence in place of the divine Voice!  No siree.  If things aren't getting better or making more sense, you just need to pray a little harder or a little better!

When you are living with a body that won't let the desires of your heart come to full form, these words and this way of thinking are no longer helpful.  Rather than spurringyou on toward victory and joy, they often give birth to fear and discouragement.  They then become like feral dogs lurking viciously outside the door, snarling and prancing as they wait for a chance to burst in and devour you.

When that happens, you need a teacher to show you a new way of being human.  You need someone to teach you how to protect yourself from despair.  You need someone to help you find your way home to a life of beauty, gratitude and delight.

Ashley appeared to me exactly when I needed her.   When it was my turn to learn a whole new curriculum, a whole new language, a whole new perspective, she made herself available - through words and real  presence - and I am now making my way into my own new normal, baby step by baby step.

For a long time, I thought of myself as a pastor and teacher for Ashley.  Now, she offers me what no one else can.  She is teaching me how to find beauty every day, how to remain grateful in the face of unremitting pain, how to nurture hope in the midst of bleakness. Together we are experiencing an exchange of grace, each of us offering and receiving understanding and compassion from the other.  This is the blessing of being in true community, where you don't have to pretend everything is alright, and success is defined by the strength of the bonds of love between you.


Who is teaching you what you most need to learn right now?

Thin Ice

There's a hesitation within my step.  My body tenses as I suddenly become aware of every cell within  my body: from my fingertips down to the soles of my feet.   I take a deep breath and gasp as I feel the pungent crisp air pass between my lips and fill my lungs.  For a moment I hold my breath and close my eyes, fearing not only to take the first step, but the journey across the uncertain ground.

Do I delicately place each step, aware of every movement I make hoping the fragile thin ice below my feet will support me?  Or do I run, seeing how far I can possibly reach before I feel or hear the ground give way?

It's time to take that first step, to set out upon the frozen sheet of icy glass and see if it will hold me.  The ground below me has been unsteady these past months, but each step I've taken has been coupled with an army of people and a barrage of potent antibiotics and medications hoping to stabilize and firm the ground beneath me.  It has been an emotional, frustrating, and exhausting endeavor to come this far, but I am amazed and so very thankful to have weathered the journey: to be able to breathe. 

Prepared to Swim

The last 161 days have consisted of two PICC lines, a sinus surgery and bronchoscopy, two visits inpatient to the hospital,  a multitude of oral medications and IV antibiotics, Influenza A, endless hours of treatments, a few drug reactions, and countless visits to my doctors.  But I have finally reached a point in which I have shown enough stability to stop IV antibiotics. It is time to see what my body will do on its own.  I'd be lying if I said I am not nervous or terrified.  It feels as if I am stepping out onto a sheet of thin ice: wondering how far I can get before the ice starts to abruptly crack beneath me, plunging me into the depths of the icy water.   How little trust I have in this body after it has betrayed me so vehemently these past months.  It is not "if" my body will betray me again, but "when."

But I must do it.  I must take a deep breath, step out onto the ice and have faith that it will hold me.  And if not, I surely can swim.

Without Fear

Wherever my steps are leading and however uncertain my path ahead may be, the journey is still most amazing. Let the brisk air pass between my lips and touch the depths of my lungs,  reminding me that I am alive . Let me not only walk without fear upon the uncertain ground, but skate across the glistening thin ice, always being a witness to the beautiful life I've been given.

Thank you to my wonderful CF team, the depth of my gratitude for each of you is immeasurable.  Thank you to my amazing friends and family who have steadfastly supported, loved, and shown me grace through this entire journey: it means more than you will ever know.  I only hope to share as much goodness as I have so graciously been shown and given.  Love to you all.

Are you walking on thin ice and prepared to swim?

Fragile

Perfectly spun, a delicate crystalized beauty in an abundance of colors, and a unique simplicity that is born from the same air we breathe.  But held too tightly or for too long between your fingers and it withers to nothing: leaving only a hint of its existence on your fingertips.

Our lives are spun together like that of cotton candy.  Our existence dances upon the air that spins beneath each breath we take, inspiring and shaping every moment we live into a beautiful web of beauty, and giving color to our unique journey.  Its simple beauty is unmistakable. Yet, it is as fragile as spun sugar bound together by air.  When we are amid the throes of life we do not fully realize or understand its complete beauty, nor do we see its fragility.

Invincible
Seldom do we realize life's extensive magnificence until we are forced to face its fragility.   I, like most people, thought myself to be invincible to life's adversities, and to some extent, still do.  Call it optimism? Denial? The endless war of my will?  However, I've tasted its fragility and I've felt the vibrancy of life seem to wither between my fingers.  CF has shown me just how delicate this life is.  It has shown me how it can affect everything in my life I love so dearly: relationships, singing, teaching, vacations, outings with friends, and making plans for the future.  CF has shown me that this beautiful life I've spent so tirelessly working towards can change in the course of mere moments.  The life I've so passionately molded is no longer recognizable; the delicate spun threads that bind my future are left uncertain.  I had always immersed myself in the complexity of life: invigorated by its chaos.  I never stopped to even entertain the thought that I would watch it all whither before my very eyes in the course of months, and be forced to evaluate my dreams, aspirations, and purpose.  I am not invincible, but I'd like to think I am. I am willing to take whatever this life has to give me: from the most chaotic of moments to the most fragile.

Fragile Beauty
As I continue to navigate this new phase of my journey, each morning I still awake with hope and the belief that it's a new day filled with great possibility.  I am learning to embrace the simplicity that life is built upon while never forgetting how truly fragile it all is.  I will always remain steadfastly grateful for all its unique and delicate beauty.   Love to you all.

How delicate and beautiful is the cotton candy of your life? 

By the way, blue cotton candy is totally my favorite. What's your color?

Living Purpose

The question of whether or not our life has meaning or purpose is something that has stirred among each of us at some point in time and echoes continuously in the dialogue of our lives.

Is a life filled with purpose something we choose, or is it something that chooses us?  Is it something that dwells deep within, or is purpose something that uniquely seeks to find each of us? 

Finding Purpose
I've always passionately felt that the purpose and meaning in my life have come from striving to be a force of good, show love, and reflect the beauty of life.  Purpose and meaning live within every breath, every moment, and every relationship: we merely have to choose to see its presence.  Purpose and meaning are living and breathing within each of us.

Has purpose sought me, or have I been determined to find it?  With this new season of life set before me and the impact CF has so recently made, the weight of life's purpose greatly weighs on my consciousness.  I can't help but question my own understanding of what my purpose is and if I am truly fulfilling what I believe to be the meaning of life.  Have I shared goodness?  Love?  Reflected the beauty that is present within my life?  Have I made any difference? How can I give more, be a part of a greater good?  I feel these days that I've been shown much more good than I've been able to share, and that I've taken much more than I've been able to give.  I am overwhelmed by the goodness and love I have been so generously shown.

Meaning Amidst the Battle
I knew this current battle and road to healing was going to be a long and demanding journey, but I honestly didn't really believe it.  After all, I am the master of mind over matter.  There's simply no way CF would be able to keep up with me and my shear will and drive for life.  Right?  Honestly, I was wrong: my body has betrayed me.  I am at a loss for words at the ruthless power of CF and its ability to cause such devastation: violently stripping me of my strength, vibrancy, and resilience. After 16 continuous weeks of trying different cocktails of IV antibiotics and approaches,  my team and I are still doing our very best to fight CF and combat its current merciless attack.  I cannot begin to adequately express my gratitude to my team for their tireless dedication, time, genuine care, and commitment to not giving up on me. They've each gifted my life with so much meaning and beauty.  CF may be strong, but we will always be stronger.   My life has great purpose and meaning, and I will reflect the beauty of life no matter the battle I face.

CF may have drastically changed my life, but I will not let it change the purpose that I have found or the meaning that has found me. There is always purpose.  There is always meaning.  They are resonating within the dialogue of each our lives.  Regardless of what is happening in our lives, the battles we are facing, purpose and meaning are present in every moment, experience, and relationship great and small.  They are alive in every breath we take. 

Whether it is something I've chosen or it has chosen me, my life is filled with great purpose and meaning.  With every breath I am given, I will always seek to share good, show love, and reflect the beauty that is life.  Love to you all.

Open your eyes. Purpose and meaning are living within you and are present all around you.

The Journey of Being Brave

Life has gifted each of us with its own unique journey: none greater, or more worthy than another.  There being moments in all of our lives that call upon us to evoke courage, bravery, faith, forgiveness, acceptance, grace, and unconditional love.  Often times, these are the most difficult expressions of empathy and compassion to show ourselves.

A Year to Remember - 2014

It seems fitting that today is my 100th blog post.  As we ready ourselves to usher in 2015, I  can't help but reflect on the significance of this past year, and the weight and meaning that tomorrow holds.  Today, I celebrate 2014: what it has taught me, the amazing relationships it has fostered, the memories it has given me, and the life I so truly want more of.  Not only do I celebrate 2014, but it also makes my heart break: the hurt it's caused the people I love, the life it's stolen, and the decisions and realities of tomorrow I will never be ready to face. 

I find myself reflecting much these days on the last year.  How I've lived each day, the choices I've made, the love I've been shown and shared,  the opportunities I've been given, and how Cystic Fibrosis has made its presence known.  It would be foolish of me to say the events of the past year have not changed me immensely.  Little did I know and understand that just 100 blog posts ago, what I thought was being started as voice of CF for everyone else, would be the very thing that has helped me come to terms with who I am, given me deeper meaning, and the courage to face the realities of tomorrow as bravely as I can.  2014 has seen its wealth of joy and has been rich with bitter tears: more than I thought were possible.  The culmination of this past year's events has brought me to this very moment and readied me for whatever tomorrow holds.   

Again, I find myself looking back at the last year of life. How incredibly different a year ago looked,  8 months ago, or even 4 months ago. To look back a month ago, I hardly recognize my life.  The tighter I try and grasp every moment, the quicker they seem to slip through my fingers.   I am no braver than the next, or more courageous.  I am simply trying to live amidst the realities that are my unique life and do so with grace.  It's been messy at times, but I will remain grateful for every beautiful breath and moment, no matter how hard. Why? Because they're all laced with the goodness and love of the most amazing people.   I could have never imagined my life as it is today, but it is a unique beautiful journey that's all my own.

Where I am Today

A month ago I was confronted with some difficult questions, a need to reevaluate my life, and the desperate realities of CF.  A month ago left me at a crossroads of painfully honest questions filled with desperation, denial, and guilt.  What if I don't get better? That clearly was an option, and we had to quickly confront the next steps if necessary.  What if these antibiotics don't work at all?  We were running out of weapons to combat CF, and the ones we did have were losing their impact.  How did I get here when I was doing everything right?  I felt so guilty for being angry that I wanted more life, when so many people with CF have never gotten to see their 28th birthday.   So many people with CF don't get to live the life I've so wonderfully lived, but how desperate I was to go back to the life I had control over.  I am still desperate to go back to that life, but I fear it will never be the same again, nor can it, for the mere sake of staying alive.  And I still feel immense guilt, especially since right now, I have been gifted with more time. 

I think back to the years when CF didn't even cross my mind.  Now, in 2014 alone, I've had a PICC line and been on IV antibiotics approximately 205 out of 365 days, taken over 15,000 pills, spent approximately 900 hours (38 days) doing respiratory treatments, had countless X-Rays, blood draws, and have had my body ravaged to the point of complete exhaustion.  I can handle all that.  What I can't handle? That I have no control over what's happening to my body.  In the past month, I've had to learn more grace and acceptance with myself than I've ever wanted to show.   I've had to mourn a life I had, mourn a future I so desperately want, and come to terms with this shell of a body that becomes more like a stranger to me every day. My life the last month has revolved around surviving: 4 IV antibiotics, a cocktail of over 50 pills a day, 4 respiratory treatments a day, and learning the delicate dance between exhaustion, conserving energy, "pushing through," and still living the life I so crave. Through all of this, however, I am most grateful for every breath I am still given.  Is this being brave? I don't think so.  It's me just desperate to truly live.

Here's to Tomorrow - 2015

2014 holds some of the most incredible moments of my life.  Each moment, relationship, opportunity, experience, and conversation has filled me with tremendous joy and made me who I am today.  2014 has shown me so much goodness and love: more than I could ever imagine or deserve.  Tonight I say goodbye to 2014, and welcome with open arms 2015 and all it means.  Will tomorrow be easy? No, but it holds such new possibility.  It may not be what I could have ever envisioned, but it's my own unique journey and it's beautiful no matter the course.  I am ready to face all that tomorrow holds. 

For now, I am celebrating all the good, the pain, the laughter, and all the tears of 2014. Tomorrow begins another beautiful day in my unique life.  Here's to each day that calls upon us to be brave, courageous, and share love unconditionally.  Here's to my 100th blog post and all of you who share in this amazing journey.  Love to you all. 

How has the last year shaped who you are today?  How has it prepared you for tomorrow?

The Greatest Gift

The worth and meaning of a gift do not come from the size of the box, its monetary value, or even the ribbon that adorns it.  Its meaning comes from how it makes you feel inside as the recipient and as the giver.  The greatest gifts are not boxes filled with things, but beautiful presents that hold so much more: love, kindness, selflessness, and gratitude.  They all make up the beautiful gift of life. 

This Christmas I have received the most beautiful of gifts.  This gift cannot fit in a box, nor can it merely be purchased: it is one of a kind and irreplaceable.  What is this magnificent gift? My life.  

Our Life

As I hand Mark a present and watch his fingers so gently tear off the wrapping paper, I can't help but be overcome with the thought of how different this Christmas could have been, in so many ways. A month ago, CF annihilated our life.  Sure, CF has always been present in our life, but never has it threatened to steal it all so quickly: to unabashedly wreak havoc on everything we know and love.  To make our life almost unrecognizable.  To be confronted with some difficult questions, realities of CF, and the possibilities of what the near and distant future might look like.  My eyes brim with tears as I think about the last month, and what it all means: the gift that is life and the people that make my days so beautiful.  Mark looks up at me and smiles, and I am reminded how truly wonderful my life is, CF and all. 

In the course of a month my lung function has steadily increased despite a new bacteria making its home in my lungs: adding itself to the already resistant team of bacteria trying to undermine every breath.  I am so grateful to my CF team for literally giving me every breath and continuing to fight with me and for me.  A month ago I couldn't walk up a few steps, take a shower, carry on a conversation, or merely walk across the room without gasping for air.  My body has been so ravaged by CF, but each day I continue to get stronger, and am so very grateful for each percent of lung function gained.  I know those devastating days will come again, and I don't think I will ever be ready for them.  I know how quickly everything can change again.  But today I celebrate each victory: walking up the steps, singing a few lines, and any signs of winning this battle against CF.  It's the most amazing gift: the gift of life.  

The Perfect Gift

This gift I have been given is immeasurable.  It is priceless.  It is irreplaceable.  It cannot be simply wrapped in a box, adorned with the most ornate bow.  This most extraordinary gift is my life: made up of beautiful breaths, unconditional love, and endless gratitude.  Love to you all.

What gift have you been given that cannot fit in a box?

The Art of Breathing Bravely

One of my daily visits to the radiator heater in the lobby.

There is an art that exists within every one of us.  It creates depth, mood, and meaning.  It paints the very existence of life.  It is the art of breathing.

The past week has left me short of breath, words, and understanding, but with a wealth of tears, and the love and support of so many people.   I could not begin to navigate this difficult time, or the difficult decisions ahead without so much love and support.  I have been cared for so greatly, by so many.  For each of you, the depth of my gratitude is so very deep and endless. 

In the last week, CF has confronted me with some painstakingly harsh realities.  Realities I was not prepared to deal with, nor do I honestly want to deal with.  I want to go home to MY life: to teaching, to grad school, to my students, to my "boys," to singing, and to planning a future with no limitations. I want to go home to the life where I run from sun up to sun down knowing no moment was wasted.  I want to naively think of CF as something that I control mentally and can merely outrun with my will and adrenaline.  This past week has shown me a different course of life, and the realities in which I must face sooner rather than later: conversations I've only abstractly thought through, lung function numbers I've only imagined were possible, and a body that is betraying every dream for the future I've made.  

The problem with CF?  It doesn't play fair, it doesn't make deals, and it doesn't care about the life you want or have.  It's an ugly disease that hurts a lot of people in its wake.  A disease I've tried to protect so many people from, to protect myself from.  A week ago, I was forced to come to terms with what I had suspected was happening to my body: it was betraying me, and quickly.  For those of you who know me, I am all about making deals with CF, constantly trying to hold it at arms reach while I live my life built upon adrenaline.  Finally, I had no choice but to succumb to what was happening.  

Something wasn't right and I knew it.  I knew there was no merely "out willing" what was happening this time.  So, with my pride tucked away and fresh tears ready to be shed, I approached what lay ahead of me.  Little did I know exactly what this last week would hold and just how difficult it would be mentally and physically.  The problem is my mind is still running at 150 mph, but my body is running at 25 mph.  My mind and body are not communicating.  I am filled with so many questions of disbelief.  I have not had time to mentally adjust to the devastation CF has caused so very quickly.  I had prepared myself for the future, but the future being when I had set it to be: many years from now.  But today when I look in the mirror, or walk across the room, my mind does not recognize its own body.  Who is this person? It can't possibly be me.  How can I not catch my breath?  How can I possibly need oxygen? How can I only walk a couple of minutes and be forced to stop because my oxygen drops to an unsafe level? My mind and soul don't understand how this simply can be.  Will it ever understand? I don't think so.  

The amazing people at the MN CF foundation got me a puppy!

In the last week I've shed a lot of tears, to the point of hysteria at times.  I've always been relatively good at keeping my emotions in check and being strong, but this week has proven to be stronger than I.   The emails and words I've had to write this week were composed of some of my worst fears and disappointments.  I feel I've let myself down, but most of all let everyone else down.  I am being forced to look at the future and faced with making difficult decisions that could have a huge impact on the definition of what has always been my life: forcing me to reevaluate life and mourn the life I so truly want.  How do I prepare my heart and mind for this?  How do I keep from shedding endless tears?  I know whatever happens and whatever my future may look like, the art of every breath I take is utterly beautiful.  There is beauty in whatever life has to give me.  I must cling to every beautiful moment I am given and bathe in its greatness, regardless of what that looks like.  

I am so incredibly thankful for each of you, for your words of encouragement, messages, your prayers, your positive thoughts, surprise packages, and your unyielding strength through it all.  You all are so very amazing.  My life is filled with so much good.  All my love to each of you.

Breathe out the beautiful art that makes up your life.

*Monday overnight was spent in the ICU being desensitized to Zosyn.  I passed with flying colors.  Lung function and effectiveness of treatments will be reevaluated again on Thursday.  Other antibiotics and antifungals have also been slowly increased while watching the effects on the liver.  We remain hopeful, always.*

Watching the World

I sit within the walls of my hospital room and peer out into the world.  Snowflakes dance across my window as I yearn to breathe in the crisp cold air I know whirls beyond the glass.  I touch the window hoping to drink in a bit of that fresh air through my fingers: hoping to breathe in some life from the outside world.  

As I sit within the walls of this hospital and watch the snow fall, I cannot help but think about all the incredible people I have in my life and all the amazing opportunities I have been gifted. I find myself reflecting on memories, dreams, the beautiful and meaningful gestures of people, conversations, the new and the lasting relationships I am so lucky to have: the life that fills me.  It is weeks like this I am reminded just how beautiful my life is, and how grateful I am for every breath and every person who makes them memorable. 

Empty Halls and a Life all My Own

Being in the hospital is always both a mental and physical battle.  As I sit within the walls of this hospital room I can't help but think of how the world continues on as normal, regardless, of where or what I am doing.  Time never sits still.   I look out my window and watch the snow swirl around the people as they come and go from the hospital: leaving footprints in small drifts of snow.  Throughout the day many more people make the trip to and from the hospital entrance: always in a rush to get to the next place: never taking a glance at the sky and its falling beauty.  As night descends the hospital becomes quiet.   

But, I am still here.  I am still locked within these walls.  I cannot go home to my boys, to my life, to school, to my friends.  For a few more days this is my home.  But honestly as CF progresses this place will become more and more my home.  It's filled with the most generously caring people and My Team who I trust with everything I have left.   So, I put my shoes on, grab my mask [CF guidelines], and take off to explore the rest of the hospital campus.  As I walk the empty halls I realize how during the day these halls are filled with people doing their jobs, helping people, saving lives, but tonight Mark and I are the only ones what seem to be on the entire hospital campus.  Everyone is home, tending to their lives: with family, friends, and living as if time nor CF has any bearing on them.

The boys came to visit.

I get back to my room, send Mark home to the boys, and find myself staring out the window again thinking about life.  I think about how the world continues on no matter how long I am stuck behind these glass windows and walls: life continues to move on.  It's mentally difficult for me to be behind these walls.  I feel I am suffocating, I am constantly wondering what I am missing out on in the world, if I am being forgotten, if I am making any difference, or just adding to the worry of the people I love.   I wonder what I am doing to Mark's life, how I am stealing it from him.  What a different life we are living than we had originally dreamed of.  How unfair it is to make him see me this way: hospitals, appointments, PICC lines, countless rounds of antibiotics, PFT's, cocktails of pills, side effects, exhaustion.  I think it's harder for me to watch him, watch me go through it all.  He tries to be strong, but I see how much it all hurts him, and how scared he really is.   As we walk together through the empty halls of the hospital, I am thankful for the mask that hides my heartbreak.  

Flurries

You cannot watch a snowflake freely fall from the sky and know exactly where it will land.  Nor can you chart the exact journey of your life and where it will lead you.  My life is like a beautiful snowflake dancing upon the crisp air, never knowing its journey or where it will land.

This past week I underwent Sinus Surgery and a Bronchoscopy.  Both surgeries went great, but it was the days following the surgeries we had to be concerned about.  After several days in the hospital I was hoping to rejoin my normal life outside in the world, but my body had other plans.  Monday morning I spiked a 102 fever.  Things didn't look good for me making a case to go home, but don't think I didn't try!  A PFT  [lung function test] was done and had plummeted from the previous week's 50% to 37%.  Another big factor not allowing me to go home.   Treatment plans were evaluated and changed, and a new course has been charted.  My body seems to get better at fighting me every time, but my mere will and strength of mind will always be stronger.  It's time to fight. 

Today, I am so grateful for My Team of pulmonary doctors, ENT, nurses, pharmacist, techs, receptionists, and respiratory therapists who I daily owe my life to: who have all so graciously made me feel like a special part of their lives.   The most gracious and heartfelt gratitude to each of them, always.  Thank you.

My life may be made up of flurries of snow that dance across the frigid South Dakota air, creating a beautiful journey to its destination.   Life has to be shaken up a bit in order for the snow to dance.  This is my life.  Every day is beautiful.  Every breath is a gift.  Love to each of you.

Breathe in that life giving brisk air today, for me. 

Thank you all for the wonderful thoughts, encouragement, cards, messages, and beautiful flowers: they all mean more than you know.

Living Memory

The Fall season is at its prime.  Everywhere I look there are hues of beautiful yellows, reds, and oranges. You can’t help but be awe struck by the beauty of the season and its ability to be so vibrant.  

The past few weeks in South Dakota have been some of the most beautiful: endless days of sun-kissed perfection bookended by cool, crisp nights and mornings.  I wish they would never end.


I am so thankful for these warm days where the sun still kisses my cheeks and I am reminded of the beauty in which surrounds me.  The explosion of Fall color is a beautiful finale to the song that is the cycle of life.  Soon, the trees will drop their leaves, left barren.   When the wind whips through their branches there will no longer be the sound of rustling leaves, but only silence.   Rays of sun upon my face will be replaced with the bite of cold air as I anxiously await the first glimpses of Spring and signs of new life.  As for today, I will be grateful for Fall's embracing beauty and the brilliance of life it represents.   

A Life Lived

Sixteen years ago, at the age of 17, my brother, Nate, died of complications associated with Cystic Fibrosis.   It’s funny how days stick in your mind no matter how many years pass between.  If I close my eyes I can suddenly become that 11 year old girl again.  I can see the color of the leaves on the trees, the faces of my parents, the frost on the ground as we stood next to his grave, the sun trying to pierce through the heavy clouds, and I can feel the crispness of the Fall wind against my face.  I am filled with the same questions, fears, and guilt 16 years later.

Those years I had with Nate seem like a completely different life: they almost don’t seem real.  For a long time I pretended those years didn’t exist.  I still do to a certain degree: always keeping memories, questions, and emotions at a safe, manageable distance.   Maybe it has always been a way for me to live conveniently in denial about my own reality, and the deep connection I will forever have with Nate and CF.  It still pains me to think about those years: what I saw, the suffering, the guilt I still have in regards to my own health/life in comparison to his, and witnessing the deep heartache of my parents.

A Living Memory

As much as I have tried to silence that part of my life, it is ever present.  Nate is ever present.  His memory and life continue to live on long after he took his last breath.   When I look in the mirror I can’t help but see him staring back at me through my own eyes.  He is alive in the way I smile, my laugh, and in each breath I feel pass through my lips.  

The memory of Nate is still alive for so many people.  He touched the lives of so many: more than I ever could have realized.  Little did I know when I was a child just how lucky I was to have all those people in my life as well.   It's been incredible to realize how those who so impacted Nate's life have also shaped my life through the years: the nurses, the respiratory therapists, child life specialists, and our doctor who became such a vital part of our family.  One of the most amazing things about this blog?  Hearing the stories of Nate and how he impacted the lives of so many people: how his memory continues to live on.  It's been incredible for me to witness another side to the life I thought I knew so well: to hear and look at his life through the eyes of those whole loved him so, and to gain an understanding other than mine as an eleven year old child.

I often find myself playing with the "ifs" of life: wondering what my life would be like if he were still alive, if CF had never entered our world.  Would we be close?  What would holidays look like?  Would he be in love?  Have children? What would our childhood have looked like without CF?  How differently would both our lives have played out?  How different would we be as people?  What if he had been given the same life saving chances that I have been given?  Would that have made any difference? Will my own journey with CF follow his same path?

The Beauty

There is beauty in every life: every breath that has been breathed.  The leaves may soon fall, exhaling their last vibrant breath as winter steals their radiance, but the memory of their colorful Fall beauty will live on, having touched each of us. The magnificence of each color is a reminder of the brilliance of our own life, lives of those we love, and the memory of those we've lost along our journey: each different, but each just as beautiful.  I am thankful for these sun stained days, the vibrant colors of Fall, its finality, the gentle reminder of just how beautiful life is,  and to passionately love every breath.  Love to you all.

Here's to you, Nate. 
Whose beautiful memory still lives on in you?