Tenacity & Strength

The true strength and tenacity within ourselves are the sole make up of the people who hold us up, believe in us, and forbid to give up the fight when we are in need of saving.

As I sit across from one of my doctors at my appointment this last week, I was overcome with the emotional realization that I am not in this alone.  As I made light-hearted jokes about the future and talked about the tentative plans ahead, I knew the only reason I got to where I am today wasn't from me fighting CF alone, but from the multitude of doctors, nurses, pharmacists, friends, family members, and complete strangers holding me up, believing in every step of my journey, and always passionately fighting with me for another breath.   What an incredibly humbling thing to realize.  I wouldn't be here if it weren't for their relentless encouragement, steadfast support, and their commitment to doing everything possible to give me another tomorrow.

To Breathe
The last few months have been filled with endless IV antibiotics, countless pills, doctor visits, hospital stays, tests, blood draws, and the need for unyielding tenacity.  The last few months have held some of the most beautiful of moments and some of the most difficult.  At times, I thought I'd never feel like me again.  That with every setback came the panic and desperation to breathe, just for another day, month, or year: to merely live one more day in the life I love with the people I love.

I still feel that desperation to live, but today it is coupled with celebration.  At my appointment last week I had a FEV1(lung function) of 50%: almost double since this past November.  I have never worked harder and desperately wished more for that number.  To be able to breathe is simply amazing.  This is most likely where things will level off, but I will never stop fighting for more.

Testing the Waters
The direction and nature CF takes isn't clearly understood, nor can its future be clearly articulated.  What we do know is that with every ruthless infection and hit my body takes, it is harder to put the broken and shattered pieces of my health back together.  This shell of a body may have been left weaker and its resilience taking a brutal beating, but my determination and will are stronger than ever.  For the last 22 weeks (and counting), my body has been inundated continually with powerful cocktails of IV and oral medications in hopes of beating down the relentless drug resistant bacteria and fungus that are trying to steal my vitality, my strength, and my very future.  With that said, the time is coming in which the boundaries and limitations of my body without all these drugs needs to be tested.  I am filled with such a cacophony of emotions:
Gratefulness, for getting to this point in which I almost feel like me again.
Anxiety, for knowing the future is bound by the destruction of CF and the pain it will cause so many.
Infinite joy, for the relationships that have fed me and brought so much beauty to my life.
Nervousness, in wondering how long it will be before my body will betray me again.
Love, for the endless grace and kindness I have been shown.  
Hope, for the possibility of tomorrow.

I am so very grateful for those who have held me up through the hardest of moments, those who have celebrated each victory, those who continue to believe in my journey, and for those that have fought with me for every breath.

I am learning not to allow the past events to fill me with fear, or the unknown of the future to fill me with trepidation, but to live for the beauty that is present in this very moment.  CF may be progressively present in my life, but it will not rule by fear.  I will breathe bravely: continually renewed by the strength and tenacity that live within, knowing I am never alone in this fight.  Love to you all.

Each of our lives is filled with people who pour themselves into us, giving us strength and tenacity to endure whatever our journey may have in store.  

Thank them today.

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. 

If You’re Happy and You Know It…

[Blog entry created by Mark Bonnema]

CF changes everything – health, breathing, relationships, hopes, dreams, even your definition of ‘happy.’  Happiness is….  a loaded question with a million different answers. Perhaps that’s why we all pursue after it, as though it is either elusive or always morphing. Either way, it is not something that we can grasp and hold onto, for the tighter we grasp the more elusive it becomes.

The act of dreaming together has always made Ashley and I happy. Dreams of walking hand in hand down a Parisian street, fresh baked aromas pouring out of the patisserie, countless hours of admiration in the Louvre, and delectables around every corner. Or perhaps sharing wishes for the backyard… landscapes, hardscapes, a wood fired oven, and area for lounging and basking in the summer sun. Likewise, dreams of camping bring us happiness. Lazy days, slow cooked meals, cool nights with a fire and s’mores… life is good.

Ashley and I still love to dream. It still makes us happy. But recently, it feels more and more like our dreams may stay need to remain just that - dreams. CF finds a way to interrupt our dreams, reminding us of the realities of life with a chronic and progressive disease. Paris is not where we want to be if Ashley begins coughing up blood, not to mention, the demands of walking miles each day through the Paris streets would utterly exhaust her lungs and body. Camping remains a lovely dream; we are always looking for updates to our baby camper, but we also worry about Ashley acquiring a fungal lung infection from the fungal spores that abound in nature. As for lounging in the sun in the back yard, well, the antibiotics cause Ashley’s skin to be very sensitive and prone to sunburn. We joke that she is “allergic to the sun.” The harder we dream, the harder CF pulls on the reigns.

Fortunately, and I truly believe this, happiness is a state of mind. As the difficult realities of life with CF intrude into our lives, robbing us of being able to realize some of our dreams, we adjust our mindset and find new reasons to be happy.  Elusive and always morphing, as life changes, so do the things that make us happy - a day when breathing comes easy and pain is controlled, an extra boost of energy that allows us to make a full trek through Target, or an evening together by the fireplace curled up with the boys (yes, I mean our dogs). 

Easy for me to say, while I am not the one living with CF. However, seeing Ashley’s steely resolve to live happy (and breathe bravely) each and every day no matter the effects of CF on her body and everyday life is enough to keep me looking on the bright side and seeing opportunities for happiness all around me.

If you are happy and you know it… it’s a choice. Don’t wait for happiness to find you. Don’t wait for all your dreams to be realized. Find reason each and every day to smile, be content, celebrate, and be filled with joy. CF may intrude into our lives and rob us of some of our hopes and dreams, but it can never take away our ability to choose happiness.

If you’re happy and you know it… good choice.