Three Simple Words

Everything is different. Three simple words that will live within me for the rest of my days and upon every breath that I am given. Tears still fill my eyes as those three words resonate in my mind. I can hear the tone in Mark’s voice as he said them, and I can trace the painful and loving honesty in which they were born to an uncontrollable truth that silently fills our life together. The uncontrollable truth called cystic fibrosis. Indeed, everything is different, but it was an honest difference I thought only I could see.

Why are those words so difficult to hear? Because I didn’t know the differences that existed intrinsically within me were noticeable to the outside world, most of all to those I love. I thought I had hidden them deep within the most cavernous parts of my being for no one to see or experience. But I was reminded that it’s not just me enduring the barrage of potent antibiotics and the effects of CF, but that their impact is much farther reaching. That their devastation silently touches all those present in my life. Suddenly, I felt exposed and like I had failed. I had failed at protecting those I love from me, from CF. Most of all, however, I felt as if I failed at protecting Mark.

The Difference Within

I don’t think Mark fully knew the extent of those three simple words and the depth of their meaning. Just how different is everything? How different am I?  Here’s an honest glimpse: 

For five weeks potent drugs saturated every ounce of my being – unknowingly permeating every part of my conscious and unconscious existence. Toxic drugs laden with a desperate unspoken hope silently infiltrated my body from within - making me slowly feel like a stranger within my own body. With every infiltration of antibiotics it seemingly gets harder to navigate this body that feels as if it’s becoming more and more foreign to me. I don’t recognize this body that has accompanied me for more than 29 years. As these drugs always seem to silently strip me of myself, I feel a bit of who I am slowly slip through my fingers. I desperately try to hold onto any familiar part of my existence. I push myself harder, constantly trying to prove to myself that I am in control - holding onto anything recognizable within myself. But there are times such powerful drugs and CF feel as if they are whitewashing every part of me – stealing my thoughts, focus, vibrancy, and self-trust.

I anxiously retreat away from the world, terrified that I am unrecognizable not only to myself but to those I love as well. Terrified that I will fail to be the person they need and lovingly know. I do my best to pretend all is fine. I do my best to pretend and prove that I am better than fine. Desperately trying to prove that no matter the merciless pounding from CF itself and the antibiotics I take, I am immovable, unshakable, and unstoppable – all in hopes of protecting those I love from the wake of CF. Even now, I feel a devastating (and knowingly ridiculous) disappointment in myself and my inability to hide such differences and protect those I love from myself and CF.

 

To Be Me

My heart turns back to Mark, thinking of what he’s silently endured and wondering the extent of such pain I have unknowingly caused him through the years. He has never shown any anger, disappointment, or remorse for this life with me - no matter how different everything at times may seem. He may never know the true impact of those three simple words, but I will always remember their deep and life-changing meaning that were born of the deepest love and honesty.

I know at the core of my being I can’t fully protect him or those I love from the brutal realities and effects of CF. It’s a truth itself just like CF. Yes, indeed, everything is different, but one thing will always remain the same: the endless gratitude that fills my very existence. My gratitude for every beautiful breath that I am given and the beautiful love that fills my life. Love to you all.

What has someone said to you that has left you changed?

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?

A Love Unlike Any Other

2008

Love.  It is alive in every word given.  In every touch shared.  In every breath taken.  

Love.  It is timeless.  

Love.  It isn't easy. 

Love.  It is the core of who we are, and its reflection can be seen in the beauty, heartache, and in the hopes that fill our lives. 

Love.  It is the greatest thing any of us will ever know.  

2002

Our Unique Story

If I close my eyes, I can still see the bright blue eyes and dimples I fell in love with over 12 years ago.  It's the beginning of our story.  Even then, I knew there was a unique depth and love within Mark.  A love unlike any other.  He is one of the very few people who has always been able to look me in the eyes and see who I really am.  He's always been able to see beneath the façade I so perfectly have always tried to paint for the world.  He has always seen me for me.  He still does. 

2004

I think back to those early years.   We would spend countless hours talking about the future and all its possibilities.  CF wasn't even a thought, let alone on the roadmap of our future plans.   I can still feel that excitement for life and how anything seemed within reach.  Life and love seemed so simple.  How could I possibly know that behind it all was a love greater than I could have ever imagined?

I often think of what our life would be like without CF: what dreams we'd be chasing that we had talked of for hours 12 years ago, 6 years, or just 2 years ago. We've experienced a lot of life in these 12 years: they've held some of the most incredible and beautiful moments, and they've held some of the most heartbreaking. Through the best of days and the hardest of days though, Mark's love has always been steadfast.  He never complains about the life we've been forced to embrace, but instead continues to tirelessly fight for another tomorrow together.  Even when I look in the mirror and see pale skin, tired sunken eyes, hair that is falling out, a puffy face, and a body I don't recognize, my reflection in his eyes still tell me that I am beautiful no matter what.  In the face of CF's progressive life stealing ugliness, he sees only beauty.  He does the laundry, dishes, goes to the grocery store, cooks, makes countless runs to the pharmacy, preps antibiotics and gets up early just to help give me a break from the world of CF, and continues being a nurse long after he leaves his shift at the hospital.  Not to mention he puts up with my sassiness, dries my tears, and unquestionably supports my dreams.  He never gets upset.  He just loves.  

2010

Heartbreak & Hope

But my heart can't help but break for Mark.  At times I feel as if I have cheated him out of the life he really deserves and the love he is really worthy of.   I think of how unfair it all is for him.  What have I done to his life? After all, this is supposed to be the prime of our lives.  I think of how our life used to be built upon spontaneity and our love for adventure: traveling every weekend, going out for supper or drinks with friends, running errands day after day.  But now it is built upon keeping CF and its exhaustion in balance.  That sleepless nights aren't caused by the cries of a new baby, but because of an alarm to change IV antibiotics again.  We used to thrive on experiencing life together: constantly on the go. But now I often watch him go it alone.  Nothing broke my heart more than when I was at the U of M and every day he would go out exploring the city, always taking pictures and sending them back to me as if I were right there next to him.  But I wasn't.  I couldn't help but think of the life he'd have without me, and how CF was stealing the time we did have together.  

2014

What has Mark done to my life?  Blessed it beyond measure and given it more joy than ever thought possible. The love I have for Mark is unlike any other.  Its depth is immeasurable and the gratitude I have for him is limitless.  The beauty of my life begins with the person who is willing to start and end every day with me no matter what we face, the person who is willing to endure every easy and difficult breath, and the person who is willing to fight at the chance for another tomorrow together.  Could we have ever really known what the future would bring those 12 years ago?  No, but that's what makes it our unique story: a story rooted in a love unlike any other.  All we have is today, this very moment, and the memories that keep the fires of hope alive for tomorrow. 

Love.  Always. 

Thanksgiving Blessings

[Following post written by Ashley's husband, Mark Bonnema]

Yesterday Ashley was admitted to Sanford for low blood oxygen levels and continued lung function decline.  That afternoon, with the guidance and advice of her CF team at Sanford, she was transferred to the CF team at University of Minnesota in Minneapolis for continued care.  We are so very grateful for her team both at Sanford and at U of M.  

There is a deafening silence about our room on the 7^th floor of University of Minnesota Fairview East Bank Hospital this afternoon. Ashley sleeps with fervor, as though it is her body’s one true desire and the only worthy way to spend her time and energy. Disrupting the grunts and groans of labored, heavy breathing is the occasional grind and hum of the IV pump, slowly turning her blood into a toxic solution – toxic to both bacteria and her usual vitality. 

Days may pass this way. Will the antibiotics and treatments be effective? Will the breath and spirit of life once more course through Ashley? Only time will tell. We must trust the situation to the hands and minds of those with expertise, her fearless and ever encouraging physicians, nurses, and hospital staff. We certainly are thankful for them today. True lifesavers.

A room with a view

And then there are all of you… ever positive, ever encouraging, ever concerned, ever loving. We feel surrounded by a cloud of your prayers, engulfed by the presence of the peace you have so diligently sent our way. Thank you to each and every one of you. We are ever thankful for each of you as well, knowing full well there is no way to ever repay your kindness, yet grateful for it in each of the many ways you have found to express it.

The plan is to continue with several forms of antibiotic and antifungal medications throughout today and tonight. Nebulizer/vest treatments also continue at regular intervals. Tomorrow Ashley will have a lung function test to see what, if any, progress is being made. The plan will adapt from there: different antibiotics, medications, etc.  For the first time ever, however, the words “lung transplant” and preparing ourselves for making that decision in the future was mentioned.  I don’t think anyone is ever ready to hear those words, nor did Ashley or I ever really think we’d ever have to hear them.   Right now, we are going to focus on fighting the battle at hand and getting Ashley well and back home, all the while cherishing each other and the fact that we can be together in this battle.

A Thanksgiving Day Blessing for my wife and for each of you this day:

May many a family and friend never cease to surround you

May you feel content and safe in your body and home

May peace seal your heart in times of unrest

May joy fill your mind and endow you with wonder

May gratitude be your nature, no matter the circumstance

May the breath of life always move you in a blessed direction

May love abound in every way, and never be far from your door