The Unsettled Sea of Stability

Within me lies a ceaseless current that fiercely drifts between the unpredictable seas of desperate contentment and self-resolve. It’s a tumultuous tide that finds a constant tension between passionately wanting and expecting more of myself and gratefully embracing all that I have. A strong current is rooted in a reality that lies just beyond sight at water’s edge – a devastating cliff silently existing beyond my view. I am sailing amidst the dark in unknown and unpredictable waters, always cautious of becoming too comfortable with life, as I know the course of life can quickly change.

A Restless Current

The salty seas of CF are steady right now. This past Friday at my CF appointment I blew a FEV1 of 50% (lung function). My last three lung function tests in the last five months have all been within a percent or so of each other. The resounding theme of such a number being the word “stability.” I’d be lying if there wasn’t an underlying current of disappointment. I know, it’s unfounded and ridiculous. So, you must be wondering the reason for such a restless current of disappointment? Shouldn’t I be relishing in the waves of life’s present stability? I should, and there is an undeniable part of myself that truly does cherish these beautiful moments of stability.

But, I crave progress and gain as I feel it distances me from the realities of CF. It makes the existence of CF in my life less harsh and painful. In every quiet moment of stability I feel as if I’m further being pushed out into open water – more exposed and vulnerable. Maybe it’s because I have seen and felt how quickly the unforgiving storms of life can rage - engulfing me in its crippling powerful wake. Maybe it’s because I’ve tirelessly fought for every breath of stability - always consumed not with the question of “if” but “when” another storm will overwhelm me. Maybe it’s because I’ve seen the price I and those I love have had to pay and the changes we’ve all had to endure just to cling to stability - always seeing the reflection of my own disappointment in their faces when I am not able to tell them of any gain. Maybe it’s because within this time of stability I realize more and more what can all be lost. 

Along this journey, harbored deep within me is also a constant guilt. I recognize how incredibly lucky I am - always knowing I could be sailing a very different sea of CF right now. How can I be so wholly grateful for every beautiful breath while still wanting more - desperate for any sort of positive progress? I know there are so many people with CF that would do anything for such stability and 50%. I want calm seas and more beautiful breaths for all of us.

Change

The past year has come with great self-reflection and many life changes. An ever-present desperation to live fully in every moment was working against me. For most of my life I ignored my tired body, constantly pushing harder to try and distance myself from the progressing undeniable realities of CF in my life. As a storm of CF would rage, I’d batten down the hatch and sail myself unknowingly further into the storm, thinking ultimately I would sail through the tumult of CF. But I never fully sailed through, I just steadied the boat – always knowing the seas below me were waiting for the right winds to catch me off guard. And with unforgiving force they did, threatening to quickly capsize me and plummet me into the powerful stormy seas of CF.

But I continued sailing – my fervent sight always set upon the horizon and calm waters. Some difficult decisions were made that January of 2015 and little did I know more would only follow. Those months were incredibly difficult but these days of stability are filled with their own unique struggles. Even within this stability are brutal reminders of the progressive and unrelenting disease of CF within my body. But the most difficult thing that challenges me? Protecting me from myself. I’m constantly trying to restrain myself from easily falling back into the deep seeded belief that I am invincible and unbreakable. I’m constantly striving to keep this ship balanced upon the unfair waters of CF that lie below. To get to this point of stability, it has taken great work and dedication. I know it’s this cautious self-awareness and this strict self-discipline that have allowed these steady tides of stability. I know I will never out-sail CF, but I can do my best to weather each current that I’m graciously given.

Stay the Course

I’m learning to embrace this stability while always charting my journey upon an endless hope and contentment. I must not misinterpret lifeless stagnancy for stability. After all, my life is anything but lifeless. Each beautiful breath is filled with more life than ever. Today I will graciously cling to the stability of 50% all while tirelessly fighting to keep it. Love to you all.



Keep your eyes on the horizon and enjoy today’s steady waters.

Champagne Bubbles & Birthdays

Photo by Maren Engel

I stare into my glass of champagne and watch it freely bubble with life as the song "Happy Birthday" dances upon my ears. I wonder if those most comforting and familiar voices that surround me know the weight of such a simple song. With every note I feel the ever present dull ache in the pit of my stomach begin to stir ferociously. With every breath I can feel its stirring panic intensify - bubbling up with every breath of air I graciously give back to the world that lent me the last. For a moment I am lost within myself - immersed within the champagne bubbles that yearn to kiss the air. As I feel that aching stir threaten to overwhelm me, I fight back the tears that brim my eyes. 

Another

I catch Mark's smile reflecting in my glass of champagne. His laugh dancing within each bubble. The dull ache inside of me growing. I wonder if Mark, too, feels that same unspoken dull ache within. That stirring unease about the passing of time and the celebrating of birthdays. I am careful not to look at Mark as I know he'd be able to see the well of emotion and desperation restlessly stirring behind my telling eyes. The desperation to live. The desperation for one more day. The desperation to stop time. I fiercely try and grip life within my salt stained fingers - to hold on to another moment, another day, another year, another birthday, another breath. 

Tears threaten to interrupt the final notes of "Happy Birthday" as each voice moves through me, embracing me with reassuring comfort. Within every stifled tear a moment etched in my memory and on my heart. Each a reminder that this life I live is filled with such goodness. A life I wouldn't trade for anything. That dull ache of stirring panic only combatted by the deepest gratitude that accompanies every breath I take and the deep love I have for the people that fill this life. What I wouldn't give to hold onto this moment forever. 

To 29

This last year has been one I will never forget - in so many respects. Through the very best of days to the most heart breaking I've embraced every moment. I've embraced this life with CF and all that it means. Every single one of those experiences bringing me to today - a place filled with such meaning, so many incredible people, the deepest of relationships, and the truest of honesties. My 28th year was like that of a beautiful bottle of champagne - bursting with life and fullness - more priceless than I could have ever imagined. Yes, every bottle of opened champagne goes flat at some point no matter the cost. But the dancing bubbles do not lose their excitement to kiss the air, they are simply set free, never once looking back from the bottle that used to confine them.

Photo by Jayna Fitzsimmons

Tear off the foil and pop the cork. 

Here's to year 29.

To never looking back. 

To embracing every beautiful breath that I am given - whatever the days graciously bring. 

To honesty. 

To sharing endless love and gratitude with the incredible people that fill my life.

Here's to truly living. With such love to you all. 

Cheers! Pour yourself some champagne and set those bubbles free. 

Embellishments of Life

They are embellishments: signs of life. They're the reminder of another day, our journey, and reflect the gift of living. They are marks that cannot be erased.  They are not battle scars, but the signs of truly living. 

The Lasting Impact

All that remains is a small pink dot about the size of a pencil eraser. It subtly adorns the underside of my arm and gives little outward suggestion to the devastation it has witnessed and the battle it has helped to fight these past months. However, it isn't alone. It is accompanied by numerous identical marks that have faded over time but still remain to tell of their own past battles.  Scars? No, they are merely beautiful embellishments left from my PICC lines that remind me of how lucky I am to breathe.

Even though my PICC line has finally been pulled, I have been free of IV antibiotics now for 2+ weeks, and the outward signs of my CF have dissipated, the effects of these past months can still be felt within.  The outer scars will heal, leaving minimal evidence of this last brutal battle, but the scars within leave a resounding reminder of CF's ruthless progression, the physical and emotional pain, the loss of the life I so dearly loved, and the shear desperation I feel to squeeze life from every moment. But these embellishments within also remind me of how grateful I am just to breathe, and how beautiful life can be wherever the path may be leading.  They are merely reminders both outwardly and inwardly of the impact CF has made on my life: some visible, some not.

Leaving Your Mark

What are the most beautiful embellishments?  The most meaningful and impactful embellishments of my life cannot be seen just by looking at me, but their marks are only visible from deep within.  These marks?  Left by the generosity, kindness, and selflessness shown by the extraordinary people that fill my life.  Those marks are deeply set and their impact is felt in every breath I take. I look back on the last several months and think of how greatly my life has changed, and I am filled with more love and gratitude than I ever thought possible.  I am still plagued by the fresh scars of my reality: the reality that I was forced to truly face these past months and continue to face. But those scars are nothing compared to the embellishments that dwell deep within me that were imprinted by the people I love: giving me renewed life, direction, and the strength to withstand whatever my journey has in store.  

The heartache brought on by CF is transformed into humble gratitude and an ever growing appreciation for life by the goodness and grace I have been gifted. I find myself today overcome with tears and emotion at the very thought of how so many people have touched and impacted my life.  There simply are no words, no actions... nothing that I can do to convey how deeply each one of you has touched my life. Every day I am reminded and humbled by the incredible people I am so lucky to know.  I hope to be a mere reflection of every embellishment that flourishes within me: the selflessness and pure goodness I have been shown by each of you. The world is filled with such beautiful embellishments that impact each and every one of us, we just have to open ourselves to seeing and feeling them.  

Signs

The signs of truly living are the embellishments in which inhabit each of us.  They are not battle scars, but mere marks of beauty that tell our story: reflecting the events and people who have shaped our lives so.  They may not be easily visible just by looking on from the outside, but beneath the surface their impact runs the depths of our being.  Love to you all. 

Take a moment to appreciate all the embellishments that have shaped your life.

A Season of Waiting

[Following Blog post written by Mark Bonnema]

A sincere thanks to all who have offered their thoughts, prayers, and love these last few days. Ashley continues to be hospitalized at the University of Minnesota Fairview Hospital with an exacerbation of a pulmonary infection. Her care team is uncertain if the problematic culprit is an antibiotic resistant bacterial infection, or an intractable fungal infection.  Regardless the cause, Ashley's lungs continue to feel and act like a wet sponge... so inflamed and full of fluid and mucous that they repel oxygen rich air. Her lung function continues to fall, reaching new lows for her. Shortness of breath, headaches, and extreme fatigue are the current norm. Ashley is beginning to wonder if she will ever be able to walk down the hall or up a single flight of stairs again without feeling like she will pass out.

Most hospitalizations for Ashley start out with the same routine... Ashley politely declines to wear a hospital gown in favor of her own clothes, she tells the hospital staff she has not traveled out of the country or been in contact with anyone displaying ebola symptoms, and... she provides a sputum sample. The hospital lab then takes the sputum (i.e. phlegm or lung mucous) sample and cultures it, allowing any bacteria or fungus present to grow on a nutrient rich petri dish. Any bacteria or fungi that grow are identified, and then a sensitivity  test is conducted, where the microbes are exposed to different antibiotic and anti fungal medications to see if they are resistant or susceptible to each medication. Ashley has progressed deep enough into her journey with CF that the bacteria that she cultures in her sputum are resistant to almost all available antibiotics. She has had to use the common antibiotics too often, and the bacteria have learned to survive in the presence of such antibiotics. (Not to worry, these bacteria are usually harmless to the general public with intact immune systems, hence I won't hesitate to steal a kiss from her without worry of becoming infected or developing pneumonia myself).

Currently, the only antibiotic that the bacteria in Ashley's lungs show any slight sensitivity, or potential to be affected by antibiotics, is a drug called piperacillin-tazobactam, which is related to a drug Ashley had an allergic reaction to when she was a child (augmentin). This is a problem. Her immune system, while failing to eradicate the bacteria in her lungs, over-responds and causes an allergic response in the presence of some antibiotic medications. The care team takes this situation seriously, and has a strict protocol in place that requires admittance to the intensive care unit (ICU) for close observation if a drug that has previously caused an allergic retain in a person is to be utilized. Ideally, we would not have to consider using this antibiotic. But in reality, it is one of the only options that remains. We have been waiting since Friday for a room to open up in the ICU so Ashley can undergo a desensitization test for the antibiotic that may be the key to overcoming her current lung infection. The ICU has been full without reprieve since Friday. While we are glad Ashley does not have imminent need to be in the ICU, we also would like to start the piperacillin, which may provide relief from her lung infection... relief from labored breathing, headaches, and fatigue, relief from the feeling that her condition is worsening and stealing her vitality and life.

CF, as a chronic disease, is often characterized by a slow decline in health and lung function and an even slower improvement. When a lung infection is at its worst and lung function has reached its lowest, it can seem an impossible task to wait for the treatments and antibiotics to do their work, all the while wondering if they will even work at all. Days and weeks may pass with little or no change.

See Ashley "Enjoying the ride amidst the wait."

Today was the first day of Advent - a season of waiting in the Christian faith. Ashley and I have passed through the spiritual and mental process that this holy season requires many times. It is usually with joy and anticipation that we enter this season of waiting upon the birth of Jesus Christ. But never before have we been forced to practice and experience waiting like this. It is no longer a mental or spiritual exercise when each and every one of Ashley's labored breaths yearns and pines for relief. Waiting for breath is difficult, it is painful and disheartening, and agonizingly real.

Ashley and I are immersed in a season of waiting. When will we be able to begin the new antibiotics? When will Ashley's lungs begin to clear? When will her breath return? When will she feel like herself again? When will she be able to make music and sing? None of the physicians or members of the care team are able to answer this for us. We must wait. Time will tell. This Advent will be unlike any we have ever experienced before. We will experience true waiting.

Your continued love, prayers, and support help us endure the wait. Thank you.

Wait in joy, heartache, and hope for what tomorrow may bring. 

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