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.

Go Twins!

[Blog post written by Mark Bonnema]

It’s been a bit of a rough go for our favorite sports team at the Ballou-Bonnema household. The Minnesota Twins recently lost 13 games in a row.

Some of the losses were bad. Real bad, like 15 to 8 against the Toronto Blue Jays, or 10 to 0 against the Kansas City Royals. Some of the losses were SO close, like a 1-0 loss in 10 innings against the Cleveland Indians. And some losses were heart wrenching, like being up 7runs to 5 runs late in the game, only to blow the lead and suffer another loss.

Whichever way they lost, whether in spectacular or heart wrenching form, Ashley and I still tuned in. Radio, tv, mlb.com, you name it, we have the Twins schedule cued up and it’s a staple background sound to be heard in our household. Win, lose, or otherwise, we cannot help but support and love our favorite team. I can’t think of anything they could or could not do to make us stop watching or supporting (but don’t take that as a challenge, you Twins, lets not go for a 14 game losing streak…)

Sometimes watching Ashley live with CF has some similarities with watching the Twins play baseball every day. There are times Ashley is doing great, her health is wonderful, and she has no hesitations or second thoughts about doing anything. Life just flows naturally. Its like when the Twins are playing good ball, winning ball – hitting home runs, advancing the runners, getting their pitches, and painting the corners of the strike zone to the opposing team’s hitters. 

But, as the Twins losing streak reminds us, there are times that life doesn’t flow so easily or naturally when living with CF. When Ashley has a flare up and needs to take antibiotics, her joints often hurt so badly in the morning that she hates to think about getting out of bed; the mucous in her lungs is deep and tenacious, forcing frequent and painful coughs in order to clear it; infection steals her vitality and tenacity making everyday tasks an overwhelming chore.

When the Twins are down, hopefully all they need is to come out of their slump, get their heads in the game, and start making plays. Perhaps a home run or double play is all that is needed to reverse their fortunes. Ashley often has to work much harder to correct the course of her health when she is in a “slump.” It can take weeks, if not many months of extra treatments, IV antibiotics, and avoiding all potential sources of viral or bacterial infection.

Even when the Twins are down, we never stop watching, cheering, and rooting them on. We just can’t help but tune in, because we love them. The same goes for Ashley. She and I both know that we have the most wonderful and supportive, unconditional group of supporters rooting, cheering, and constantly working for the best care and treatments for Ashley. Whether her heath is on the “winning” or “losing” side, you guys are always tuned-in. You are even better than the most avid Twins fans, and for that we thank you.

Good news. The Twins won a game on Thursday night, September 1, 2016. They ended their losing streak when they beat the Chicago White Sox 8 to 5.  

In even better news - it's been a winning season here in the Ballou-Bonnema household! Every day Ashley gets and feels good is a WIN! Thanks to each of you for your steadfast support and for being a part of our team. Most importantly, thank you for our ability to trust and know you will be there tomorrow as well, no matter the score.

Go Twins, go! 

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?

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?

An Imperfect Struggle

[Part II of "The Artistry of Being Honest"]

Beauty is not defined by the perception of others but is defined by what we see in ourselves. But often, it is we, ourselves, who are most critical and most blind to our own unique beauty. We fall short of our own expectation of such things– seeing only what makes us different as ghastly markings of our insignificance and unchangeable and uncontrollable imperfections.

A Change of Beauty

For as long as I can remember I’ve been perceptive to the definition of beauty and how I have failed to meet my perceived self-standard. My earliest memories are filled with an innate awareness of how I was different than those around me. My childhood memories are woven within the reflection I saw of myself in my brother and the devastating disease of CF. Outwardly, I noticed how my brother’s hands and fingers were different than our family’s. I saw how his chest was broad and barreled - his ribcage seemingly too large for his tiny frame. I noticed that his cough set everyone on edge. I noticed how it tore through the world’s natural chaos like a knife tearing through paper.

I began to notice with every passing year that too, my own hands looked more and more different. That too, my ribcage seemed too large for the frame of my body. That too, my legs and arms seemed so bony and thin. I noticed how my own cough would bring upon unwanted attention and alarm, highlighting the very part of myself I was trying to conceal. With every passing moment I noticed these uncontrollable changes becoming more glaringly distinct - each a hideous reminder of what made me different.

Imperfections

I recall moments I’d look at my reflection as a child and wish nothing more than to look and be like everyone else - moments in which I felt truly alone and different. I wish I could say as the years passed those feelings diminished but they only grew, consuming me from within. I fiercely tried to cling to what I could control as the ugly truth of CF became more and more visible. I’d wear clothes to hide the shape of my body. I’d hold my breath and inwardly fight the relentless scratch in the back of my throat and rumble within my lungs that wanted to unleash a fit of coughing. Yet, the more I tried to conceal and control of CF, the more I saw its imperfections staring back at me. Those uncontrollable realities of CF imprinted into my being and mocking me through my own eyes, constantly reminding me of how I was different - making me see myself as anything but beautiful. Those unyielding reminders still plague me and forever will.

The precious time I spend giving thought to the size of my ribcage, my gecko fingers, my puffy steroid cheeks, and piercing cough, strips me of the freedom to immerse myself into every beautiful breath that comes from within. It steals a moment of my life that instead could reflect the true meaning of beauty and replaces it with destructive and depleting anxieties. Some days do those surmounting anxieties and realities seem unbearable? Yes. But I then force myself to breathe, clinging to the beauty that lies within every breath I take. I remember the simplistic unique beauty of life itself. I force myself to smile. And you know what? The world always smiles back, melting away my restless insecurities of despair. Those genuine smiles reassure me, reminding me that I am not alone. Also, about a year ago a Canadian photographer did a photo book project called Salty Girls: the Women of Cystic Fibrosis and before that did a project called Just Breathe: Adults with Cystic Fibrosis. Both books and projects depicting the honest beauty and raw stories of adults with CF. For the first time in my life, there before my eyes spread across countless pages, I saw myself and my unique differences reflected in those beautiful people. Some of the sweetest friendships I share today have come from fellow people with CF. They are truly beautiful in every sense of the word, reminding me that I am not alone or painfully different, but beautiful.

Unique Beauty

We each see our uniqueness as glaring reminders of what makes us different and at times an outcast. It’s easy to tear ourselves down, pick apart our bodies, lives, actions, or situations. We inwardly focus only on our imperfections and how we fall miserably short of our own expectations of perfected beauty. We think our differences are what define us, and that they are the only things others can see. But they are not. We just have to allow ourselves to believe such truth. What if when we each looked in the mirror, we decided to see those differences as what makes us truly beautiful instead of only seeing them as ghastly imperfections? We’d finally free ourselves from our own suffocating expectations and lies of self-determined beauty. We’d be able to freely allow our differences and imperfections to be the very things that connect us to one another, not separate us.

I know it’s not that simple and I know it’s something in which I am always going struggle. But I force myself to smile and remind myself, “this is my life and this is my truth.” We are each stitched together by a stunningly unique beauty, both externally and inwardly. That unique beauty is what makes each of us wonderfully different and truly who we are. Love to you all.

You are beautifully different. This is your life and this is your truth.

Check out Ian Pettigrew’s latest photo project, “Salty Girls – the Women of Cystic Fibrosis” here.