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.

Fragile

Perfectly spun, a delicate crystalized beauty in an abundance of colors, and a unique simplicity that is born from the same air we breathe.  But held too tightly or for too long between your fingers and it withers to nothing: leaving only a hint of its existence on your fingertips.

Our lives are spun together like that of cotton candy.  Our existence dances upon the air that spins beneath each breath we take, inspiring and shaping every moment we live into a beautiful web of beauty, and giving color to our unique journey.  Its simple beauty is unmistakable. Yet, it is as fragile as spun sugar bound together by air.  When we are amid the throes of life we do not fully realize or understand its complete beauty, nor do we see its fragility.

Invincible
Seldom do we realize life's extensive magnificence until we are forced to face its fragility.   I, like most people, thought myself to be invincible to life's adversities, and to some extent, still do.  Call it optimism? Denial? The endless war of my will?  However, I've tasted its fragility and I've felt the vibrancy of life seem to wither between my fingers.  CF has shown me just how delicate this life is.  It has shown me how it can affect everything in my life I love so dearly: relationships, singing, teaching, vacations, outings with friends, and making plans for the future.  CF has shown me that this beautiful life I've spent so tirelessly working towards can change in the course of mere moments.  The life I've so passionately molded is no longer recognizable; the delicate spun threads that bind my future are left uncertain.  I had always immersed myself in the complexity of life: invigorated by its chaos.  I never stopped to even entertain the thought that I would watch it all whither before my very eyes in the course of months, and be forced to evaluate my dreams, aspirations, and purpose.  I am not invincible, but I'd like to think I am. I am willing to take whatever this life has to give me: from the most chaotic of moments to the most fragile.

Fragile Beauty
As I continue to navigate this new phase of my journey, each morning I still awake with hope and the belief that it's a new day filled with great possibility.  I am learning to embrace the simplicity that life is built upon while never forgetting how truly fragile it all is.  I will always remain steadfastly grateful for all its unique and delicate beauty.   Love to you all.

How delicate and beautiful is the cotton candy of your life? 

By the way, blue cotton candy is totally my favorite. What's your color?

Living Purpose

The question of whether or not our life has meaning or purpose is something that has stirred among each of us at some point in time and echoes continuously in the dialogue of our lives.

Is a life filled with purpose something we choose, or is it something that chooses us?  Is it something that dwells deep within, or is purpose something that uniquely seeks to find each of us? 

Finding Purpose
I've always passionately felt that the purpose and meaning in my life have come from striving to be a force of good, show love, and reflect the beauty of life.  Purpose and meaning live within every breath, every moment, and every relationship: we merely have to choose to see its presence.  Purpose and meaning are living and breathing within each of us.

Has purpose sought me, or have I been determined to find it?  With this new season of life set before me and the impact CF has so recently made, the weight of life's purpose greatly weighs on my consciousness.  I can't help but question my own understanding of what my purpose is and if I am truly fulfilling what I believe to be the meaning of life.  Have I shared goodness?  Love?  Reflected the beauty that is present within my life?  Have I made any difference? How can I give more, be a part of a greater good?  I feel these days that I've been shown much more good than I've been able to share, and that I've taken much more than I've been able to give.  I am overwhelmed by the goodness and love I have been so generously shown.

Meaning Amidst the Battle
I knew this current battle and road to healing was going to be a long and demanding journey, but I honestly didn't really believe it.  After all, I am the master of mind over matter.  There's simply no way CF would be able to keep up with me and my shear will and drive for life.  Right?  Honestly, I was wrong: my body has betrayed me.  I am at a loss for words at the ruthless power of CF and its ability to cause such devastation: violently stripping me of my strength, vibrancy, and resilience. After 16 continuous weeks of trying different cocktails of IV antibiotics and approaches,  my team and I are still doing our very best to fight CF and combat its current merciless attack.  I cannot begin to adequately express my gratitude to my team for their tireless dedication, time, genuine care, and commitment to not giving up on me. They've each gifted my life with so much meaning and beauty.  CF may be strong, but we will always be stronger.   My life has great purpose and meaning, and I will reflect the beauty of life no matter the battle I face.

CF may have drastically changed my life, but I will not let it change the purpose that I have found or the meaning that has found me. There is always purpose.  There is always meaning.  They are resonating within the dialogue of each our lives.  Regardless of what is happening in our lives, the battles we are facing, purpose and meaning are present in every moment, experience, and relationship great and small.  They are alive in every breath we take. 

Whether it is something I've chosen or it has chosen me, my life is filled with great purpose and meaning.  With every breath I am given, I will always seek to share good, show love, and reflect the beauty that is life.  Love to you all.

Open your eyes. Purpose and meaning are living within you and are present all around you.

Time to Fly

Our lives are filled with monumental precipices that impact the course of our journey.  As we look out towards the horizon, we can see the moments, experiences, and choices that have all led us to this very moment in our lives.

I find myself at the edge of a new precipice.  For the last month I have been standing at the edge, terrified and resistant to take the next leap.  I've been merely free falling: desperate to cling to the life I've had, the body I could trust, and resistant to face the realities of the future.  Decisions and choices consume me that will impact every part of my life.  I would be foolish to say that CF has not impacted the way in which I've made decisions in my life, and my hunger for it all.  Despite CF and its relentless attempts to undermine the course of my journey, I've lived passionately with intent.  I have faced each precipice life has brought me to without regret.  

Passion, Intent, Hunger

I used to be a master at concealing CF, but for the past couple of years it has been making its presence more and more known in my life: making it impossible to hide.  As it progressed, I simply would throw myself into life more passionately, shutting out the truth of what was really happening, desperate to silence the deafening realities of CF ringing through my body.  But through it all, there's always been this small, stirring presence, that has lived deep within me: the voice of CF that would quietly stir and resound within.  Every time I'd hear it stirring, I'd simply push harder.  I'd fill my life with more, just to prove to myself I could do it all: graduate school, teaching, singing, road trips, a marathon of rendezvous with friends, and other spontaneous excursions just to show myself I could do it all, no matter what it was really costing.  That hunger, drive, and passion still burn passionately within, but the voice of CF within is resounding loud and clear.  As I stand on the edge of this new precipice, I can no longer run from that thunderous voice.  I must take the next leap embracing every part of who I am, fearing not the fall, but trusting that I will spread my wings and fly.

The last month has left my body vehemently fighting rampant bacteria in my lungs, Influenza A, and extreme exhaustion. The more I merely try to "push through" the more my body fights back.  My days of hitting the ground running from 7 a.m. to 1 a.m. have come drastically to a halt and are physically impossible.  Life has become an art of balancing, conserving, and expounding energy.   The last month has sparked some serious discussions about my lifestyle, my future, and the reality of the cost of what I've been putting my body through.   Simply put, I was given two choices.  Either continue doing what I've been doing and know that it could ultimately be killing me, or make some drastic lifestyle changes and learn to respect my body and get as many beautiful days as I can.  

Learning to Fly

So, here I stand at the edge of my precipice, looking out over the incredible moments, relationships, and events that have made up my beautiful life thus far.  It's time for me to take that leap, to make some changes to my life, to step off from the edge.  What is most incredible is the beautiful opportunities that lie ahead amidst the heartache of these life changes.  Through the tears I shed for the amazing life I've been able to live, I am happily grateful for all the beauty each new tomorrow holds.  I am ready to step off of this precipice, spread my wings, and fly.  Love to you all. 

We all stand at the edge, hesitant to take that leap, clinging to the ground we know.  

Take a deep breath, leap, and feel yourself fly.  It's going to be a beautiful new part of your journey.

The Journey of Being Brave

Life has gifted each of us with its own unique journey: none greater, or more worthy than another.  There being moments in all of our lives that call upon us to evoke courage, bravery, faith, forgiveness, acceptance, grace, and unconditional love.  Often times, these are the most difficult expressions of empathy and compassion to show ourselves.

A Year to Remember - 2014

It seems fitting that today is my 100th blog post.  As we ready ourselves to usher in 2015, I  can't help but reflect on the significance of this past year, and the weight and meaning that tomorrow holds.  Today, I celebrate 2014: what it has taught me, the amazing relationships it has fostered, the memories it has given me, and the life I so truly want more of.  Not only do I celebrate 2014, but it also makes my heart break: the hurt it's caused the people I love, the life it's stolen, and the decisions and realities of tomorrow I will never be ready to face. 

I find myself reflecting much these days on the last year.  How I've lived each day, the choices I've made, the love I've been shown and shared,  the opportunities I've been given, and how Cystic Fibrosis has made its presence known.  It would be foolish of me to say the events of the past year have not changed me immensely.  Little did I know and understand that just 100 blog posts ago, what I thought was being started as voice of CF for everyone else, would be the very thing that has helped me come to terms with who I am, given me deeper meaning, and the courage to face the realities of tomorrow as bravely as I can.  2014 has seen its wealth of joy and has been rich with bitter tears: more than I thought were possible.  The culmination of this past year's events has brought me to this very moment and readied me for whatever tomorrow holds.   

Again, I find myself looking back at the last year of life. How incredibly different a year ago looked,  8 months ago, or even 4 months ago. To look back a month ago, I hardly recognize my life.  The tighter I try and grasp every moment, the quicker they seem to slip through my fingers.   I am no braver than the next, or more courageous.  I am simply trying to live amidst the realities that are my unique life and do so with grace.  It's been messy at times, but I will remain grateful for every beautiful breath and moment, no matter how hard. Why? Because they're all laced with the goodness and love of the most amazing people.   I could have never imagined my life as it is today, but it is a unique beautiful journey that's all my own.

Where I am Today

A month ago I was confronted with some difficult questions, a need to reevaluate my life, and the desperate realities of CF.  A month ago left me at a crossroads of painfully honest questions filled with desperation, denial, and guilt.  What if I don't get better? That clearly was an option, and we had to quickly confront the next steps if necessary.  What if these antibiotics don't work at all?  We were running out of weapons to combat CF, and the ones we did have were losing their impact.  How did I get here when I was doing everything right?  I felt so guilty for being angry that I wanted more life, when so many people with CF have never gotten to see their 28th birthday.   So many people with CF don't get to live the life I've so wonderfully lived, but how desperate I was to go back to the life I had control over.  I am still desperate to go back to that life, but I fear it will never be the same again, nor can it, for the mere sake of staying alive.  And I still feel immense guilt, especially since right now, I have been gifted with more time. 

I think back to the years when CF didn't even cross my mind.  Now, in 2014 alone, I've had a PICC line and been on IV antibiotics approximately 205 out of 365 days, taken over 15,000 pills, spent approximately 900 hours (38 days) doing respiratory treatments, had countless X-Rays, blood draws, and have had my body ravaged to the point of complete exhaustion.  I can handle all that.  What I can't handle? That I have no control over what's happening to my body.  In the past month, I've had to learn more grace and acceptance with myself than I've ever wanted to show.   I've had to mourn a life I had, mourn a future I so desperately want, and come to terms with this shell of a body that becomes more like a stranger to me every day. My life the last month has revolved around surviving: 4 IV antibiotics, a cocktail of over 50 pills a day, 4 respiratory treatments a day, and learning the delicate dance between exhaustion, conserving energy, "pushing through," and still living the life I so crave. Through all of this, however, I am most grateful for every breath I am still given.  Is this being brave? I don't think so.  It's me just desperate to truly live.

Here's to Tomorrow - 2015

2014 holds some of the most incredible moments of my life.  Each moment, relationship, opportunity, experience, and conversation has filled me with tremendous joy and made me who I am today.  2014 has shown me so much goodness and love: more than I could ever imagine or deserve.  Tonight I say goodbye to 2014, and welcome with open arms 2015 and all it means.  Will tomorrow be easy? No, but it holds such new possibility.  It may not be what I could have ever envisioned, but it's my own unique journey and it's beautiful no matter the course.  I am ready to face all that tomorrow holds. 

For now, I am celebrating all the good, the pain, the laughter, and all the tears of 2014. Tomorrow begins another beautiful day in my unique life.  Here's to each day that calls upon us to be brave, courageous, and share love unconditionally.  Here's to my 100th blog post and all of you who share in this amazing journey.  Love to you all. 

How has the last year shaped who you are today?  How has it prepared you for tomorrow?