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?

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?

To Beautifully Belong

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

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

A Quiet Stillness

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

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

Beautifully Enough

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

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

Life fills my soul. 

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

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