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?

Impossible Firsts

I remember the first night I was alone in a hospital room around the age of seven. I remember crying myself to sleep and begging my mom not to leave. I remember blood draws, failed IV starts, and the feeling of the cold vinyl against my skin as I lie against the sterile exam table. I remember counting the ceiling tiles and listening to the sound of my own breathing - something I still do. I remember the feeling of the unwelcoming cold tile floor barren below my feet in my hospital room shower.  I remember the whooshing and clicking sound the door made as it closed and opened.

I remember the first time I told Mark about CF and the ceaseless determination in his eyes. I remember the first time I coughed up blood and the terror that pierced through my body. I remember for the first time being truly terrified of the power of CF and the destruction it could cause. I remember the first time realizing my lungs were starving for air. I remember the first time the words “lung transplant” were said to me and the burning disbelief that such words were possible. I remember the first blog post I ever wrote and the life-changing truth that filled each sentence.

My life is filled with many painful firsts that have molded me into the person I am today. But my life is also filled with the most beautiful of firsts:

Beautiful Firsts 

I remember my first slumber party. I remember my first day of kindergarten and climbing the three big steps onto the school bus. I remember the first time I jumped off a diving board and rode a bike without training wheels. I remember my first voice lesson and the first notes I played on my piano.

I remember my first kiss. I remember the first time I stood on the stage on opening night. I remember driving my first car and learning how to drive a 5-speed. I remember my first prom and the best friend that made the night so memorable. I remember saying my first real goodbyes to friends as we graduated from high school. I remember the first time I said, “I love you” and the butterflies that filled my stomach.

I remember looking at my first apartment. I remember my first conversation with my college roommate and the way of her smile and how it created a crease at the corners of her eyes. I remember my first day of college. I remember my first time in Paris and eating jambon et fromage baguettes on the street. I remember tasting my first alcohol and the morning after. I remember my first week of finals and my first spring on campus.

I remember looking down for the first time at my left hand and the sight of my engagement ring. I remember the first time I saw Mark on our wedding day and the color of his eyes. I remember the first dance at our wedding. I remember buying our first house and the beautiful dreams that awaited. I remember bringing our first dog, Cooper, home and making us a family.  

This beautiful list could endlessly go on. In all honesty, though, would all these firsts look as sweet to me if not for CF? While my life is filled with many beautiful and heartbreaking firsts, the most beautiful thing of all is that I can share them with you. By all odds I shouldn’t be here and by all odds I shouldn’t be breathing. By all odds CF should have stolen every last beautiful breath long ago, along with so many firsts. But it hasn’t. 

Because of you

I owe each of these firsts to you. No, really. I am here because of you. I am here because you weren’t willing to give up. I am here because you believed in this fight and the beauty in every breath. Does that mean there aren’t difficult days ahead? Of course, not, but we continue to press on with unfaltering hope for the opportunity to create more beautiful and memorable firsts. While I have lived a life filled with the most incredible of moments, there is so much life I have yet to live.  I am here because of your support, and the life-saving drugs and therapies developed by the Cystic Fibrosis Foundation. Without their relentless drive to research and drug development, many of us would not be here today. But what’s the most humbling part of each life-extending drug I take? None of them would be possible without you. Truly.

More Impossible Firsts
So I ask you from the bottom of my heart and from the depths of my scar ridden lungs to join me in the relentless pursuit for more beautiful days filled with impossible firsts. We are so very close to a cure but we are not there yet. Continue this fight not for me but for the parents, families, and friends who yearn to celebrate so many firsts and beautiful moments with their loved one with CF. 

Walk with me for Team Ashley in Great Strides for CF on June 4, or find a Great Strides/team to support in your city! Show your support not for me, but for all those whose lives have been touched by CF. Love to you all.

Sign up or donate 

to Team Ashley:

 http://fightcf.cff.org/site/TR/GreatStrides/80_Minnesota_Minneapolis?pg=team&fr_id=4825&team_id=50338

Team Ashley

Great Strides for CF - Cystic Fibrosis Foundation

Saturday, June 4, 2016

10 a.m.

Spencer Park . Sioux Falls, SD

Help be a part of a beautiful future filled with so many firsts. 

Please note that donations made to Team Ashley go to The Cystic Fibrosis Foundation.

Trouble in Paradise

[Blog post written by Mark Bonnema]

Vacation - a perfect combination of down time, relaxation, sunshine, but also a little added stress. Even something as simple as traveling to Florida to relax in the sun with family is not as easy as it seems when traveling with CF.  

Just because we are in Florida does not mean we are insulated from the everyday issues a couple living with CF may have to face. In fact, now that we have nothing but time on our hands, emotional and relational issues that have been lying dormant just under the surface of our relationship have opportunity to emerge. Its like the tide is going out, revealing what has been hiding under the seemingly peaceful surface waters. I feel it. I am all too aware it is there. Ashley feels it too. The undertow. When we are at home and in our daily routine, it does not bother as much, but we are not at home anymore, now we are in “paradise.”

The issue? My emotional life (or lack there of). The most difficult feeling for me to cope with is helplessness. I feel it often, slowly deflating my spirit, conditioning me to believe there is nothing I can do to fix, heal, or save Ashley.  It leaves me with an unsettling fear that I hate to even think about, a fear that Ashley’s health will turn and I will have to watch as she battles for every breath. An extra cough, a rattle in the chest, or sunken eyes send panic coursing through my veins. It pushes me to the point of fretful despair, which of course, Ashley experiences as pity and will have nothing to do with. Perhaps you can imagine her saying, “Aw heck no!” She will neither accept nor tolerate even the slightest hint of pity. And so I frantically do anything I can to stay busy and to try to provide for her the only way I know how (and distract myself in the process) – cooking, cleaning, doing laundry, keeping the house in repair, playing nurse... I feel better about myself because I have been able to do something, even if I could not save or fix Ashley.

But, and it is always a surprise to me, it seems Ashley still wants me to just be her husband - a partner and companion in life that shares in each and every joy, hurt, pain, and celebration. She wants and needs me to be who I once was, someone who is in tune and in touch, listening, noticing, being thoughtful and caring. My quest to do things for Ashley to combat CF perpetually gets in the way of my being a husband. In fact, it has caused me to forget how to even go about being a husband, and nowhere is this more glaring and evident than while we are on vacation, in "paradise."

I can’t switch off. I don’t know how to stop being caregiver, housekeeper, cook. It is patronizing to Ashley. She is not invalid, certainly not incapable, and does not need to be treated like a child. I know I make her feel that way at times, like while on vacation and I try to do, plan, and prepare everything for her. Meanwhile she’s looking for a husband, and I am stuck in caregiver mode, perhaps because I do not want to come face to face with the undertow of emotions lying below the surface, threatening to pull me under. Its much easier and safer to stay busy doing things for Ashley, and to equate (or confuse?) that business with showing love. 

Being a husband is not a role I can step into and out of. It’s at once an everyday and lifetime way of being that elevates and supports my spouse in each and every aspect of her life. True, it may involve some caregiving and doing of tasks in support of Ashley, but it needs to go deeper, and that is what I have lost touch with. Leave it to paradise to remind me that the sun and sea breeze does not fix everything.

This is hard for me to admit. I feel I have let Ashley down, myself down, and given CF a foothold in our lives. I hate putting it in writing, which seems to make it official by shedding light on it. But Ashley means too much to me to let the tide of CF erode our relationship as it thrusts painful emotions upon us and between us, threatening to drag us under into the undertow. 

  

I am in this with you, Ashley. I am committed to fighting CF in the many ways it creeps into our lives. But what’s more important, I love you, and I love you as the person that you are above, beyond, and regardless of CF. You are my sunshine, and I don’t ever want it to set on us or on our beautiful life together.  You are my paradise. 

What threatens to pull you into its undertow?