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.

Today's Patience is Tomorrow's Possibility

Patience is not an entity in and of itself, but is a process, the act of learning to embrace a state of mind.  It's something that must be practiced, embodied, and given room to grow.

I must have patience for today, for the days ahead, and a steadfast appreciation for days past and how they have molded me.  I would be foolish to tell all of you that I haven't had moments this week when I lost sight of myself and felt a complete wreck: distraught with emotion for the future and the life I called my own a mere few weeks ago.  CF is not only getting a grasp on my lungs, but my mind as well.  I am so used to making plans for tomorrow, cramming as much life into every minute of every day, and living in overdrive.  I am having to retrain my mind as much as my body.  Most of all though, I am having to embrace patience.

Small Victories
I must embody patience for what today brings, and patience in knowing tomorrow is a new day filled with new possibility.  It may look different than I so desperately want it to, but every ounce of progress and growth is something worth celebrating.  Each day holds its own victory, no matter the size.  The smallest of good and progress overcomes any adversity.  The smallest of victories may be paired with the greatest patience, but in the face of this battle against CF any progress is a tremendous victory filled with possibility.

Today was filled with beautiful victories.  For the first time in weeks I can catch a glimpse of myself when I look in the mirror.  For the first time I feel somewhat like "me."  For the first time in weeks I do not completely fear this body which encapsulates my soul and mind.  I do not dread or fear looking in the mirror and seeing what stares back at me.   For the first time in over a week, I recognize myself.   Part of it might be my body and mind adjusting somewhat to the current mood of my lungs and life, but for sure what I see is the reflection of love, support, and unfathomable kindness I've been shown by the medical team here and the all wonderful support I've been given outside these walls by all of you.

Hope
Yesterday, my lungs showed us all some signs of improvement.  My lungs and body have a long way to go, but it's progress.  After days and days of decline and not recognizing the person from within myself, having patience for today and hope in tomorrow's possibility have brought progress and small victories.  This is going to be a long road, and there will be tough decisions and days ahead, but I am learning to dwell in patience and remain grateful for the beautiful journey that is my life.  Most of all, grateful for each wonderful person and experience whose path I have the privilege to cross.

I am so thankful for every person that is on this journey with me.  I owe my life to so many wonderful people.  I am so incredibly humbled by the generosity, love, and endless kindness I have been shown.   I am learning that the pursuit of patience holds a beauty all its own.   Love to you all.

Be patient, you never know what beautiful possibility it will give to tomorrow. 

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

Enjoy the View

Le Tour Eiffel

71O. That's how many steps I climbed not once, but twice, to view the spectacular city of Paris from the second deck of the Eiffel Tower.  Oh, how I took each one of those moments and steps for granted.  I wish I would have held on to those moments for a bit longer, and would have savored every step a bit more.

Are you one of those people who takes the stairs instead of waiting for an elevator?  I used to look at the stairs and think of them as a challenge, but now the sight of them fills me with unease.  The internal monologue that used to play in my head would go something like this:
"Show those lungs that you can conquer those stairs!"
"CF isn't going to tell you that you can't climb those stairs!"
"Make those lungs work: feel each breath!"

I would do the stairs just to prove to myself I could do them.   I still do, but not as quickly or as easily. 

View from Sacre Coeur in Paris

Today, I look at the stairs, how many there are, and how much my lungs are going to hate me while trying to scale them.  Even as few as 15 steps makes my lungs stressed and screaming for oxygen.  As CF progresses, it becomes more and more difficult for people affected by the disease to do physical activity due to decreased O2 levels and lung deterioration.

O2
Oxygen, we all need it to live.  Oxygenation happens when Oxygen molecules enter the tissues of the body: keeping them healthy, vibrant, and alive. Normal blood oxygen levels range from 95-1OO.  When I am resting my O2 level is usually a stable 94-96%, but when I go for a good walk or climb stairs it begins to drop: making me light headed and my lungs desperately searching for air.

View from the Eiffel Tower 

Will I still take the stairs? Yes. Well, maybe not 71O of them, but if the view is spectacular I will scale those stairs one step at a time.  I am so grateful for all the stairs I have been able to climb and the spectacular views I have beheld.  Here's to the beautiful new sights I have yet to see and the stairs I have yet to climb!  Love to you all.


Today, take the stairs for me, and enjoy the view.