Illumination of Gratitude

To be humbly grateful for every moment, relationship, and breath both past and present, while still holding out hope for all the greatness yet to come, is something I will forever strive to embody and illuminate.

In the darkest and most difficult of days, the glow of gratitude that burns within can seem as if it grows dimmer with each setback, each realization that I am not in control, and each panic stricken gasp for air. To say these past few weeks have been difficult, incredibly emotional, and frustrating would be an understatement.

A Stranger
I am a mess of emotion.  I have found it harder and harder to keep my emotions in check, to paint a stoic, strong, and graceful façade on the for world, and to hide my own growing disappointment in myself and my lack of control over CF.   Never once have I ever felt that CF has had control over me. Never has CF threatened to dampen the glow of life from within, never have I felt it has threatened to get the best of me.  Until today.  CF is relentlessly attacking my body and mind.  My body aches with every breath, cough, and movement as if every rib and muscle is bruised beyond beating.  Not to mention the beating my body has been taking from antibiotics and medications coursing through my veins.  The worst part of it all isn't the battle raging within my body, it's the battle raging within my mind: feeling like a complete stranger and prisoner in my own skin.

In the last week there has been a new PICC line placed, signs eluding to liver damage, the severe side effects of a brutal new drug, the evaluation and stopping of most antibiotics because of stress on my liver, increased exhaustion, low Blood Saturation levels, and continued low lung function that forbids to give me any reprieve.  I can't help but ruminate over what I did wrong, where I took a misstep, or how I could have allowed CF to take such control over me when mere months ago I was feeling the best I have in years.

Illumination
Amidst it all, I still am filled with so much gratitude.  I am grateful for any level of normalcy that distracts me from the reality of CF, anything that makes me momentarily forget:  grad school, friends, teaching, travel, living for the hope that tomorrow is a new day.  I will awake with the hope that I will sing again, that I will drink in air without thought, that I will climb the stairs without every muscle burning, or my body betraying me.  Through the best of days and the hardest of days I will always be grateful.  I will smile through the tears,

Through the mess of emotion there still burns a steadfast glow of gratitude from deep within.  That light can never be extinguished no matter what CF throws at me.  In the most difficult of moments, the smallest ounce of light will always pierce the darkness.

My life is rooted in the endless gratitude I have for each of you.  I am grateful for every single beautiful breath, no matter how deep.  For every endearing word of love and support.  For every meaningful hug that is held for just an extra moment.  For my CF team who means more than they'll ever know.  For my friends and family who tirelessly fight beside me.  For Mark and his unyielding commitment to being strong for me.  For each person who believes in my future.  For each beautiful moment that has made up my amazing life thus far.  With great love and thanks to you all.

Let your life be illuminated by gratitude.  What are you grateful for?

Whitewashed

[Blog entry created by Mark Bonnema]

Ashley got her wish! It snowed six inches in Sioux Falls this weekend – light, fluffy, delicate snow – and Ashley was at home to watch each and every flake descend on the world around her! 

I think the allure of “drinking in a bit of fresh air….” that she wrote about in last week’s blog post wore off as soon as she tasted the bitter cold of our current arctic blast. Yuck. None-the-less, there was a palpable contentment and peace about Ashley’s spirit as she watched the snow from our living room…. memories of her recent hospitalization melting away by the fireplace. The boys (Cooper and Kalvin, our dogs) were out of their minds with excitement that Ashley was home, and ensured Ashley did not have to endure even a moment of loneliness as I was away working at the hospital over the weekend.

The first major snow of the impending winter is always a bittersweet affair.  While it is cold, icy, and treacherous, it is also lovely and fresh. The grays and browns of late fall are painted over with a whitewash of delicate snowflakes.  The world takes on a new allure and promise. After a bit of adjustment to the new temperature norms, you can almost see past the cold into the majestic beauty that is winter.

*It was here that I was going to write about Ashley, and how she is not able to undergo a whitewashing of her lungs, to have them renewed and rejuvenated, as cystic fibrosis is a progressive disease that is always adding to its cumulative damaging effects on her lungs. But, Ashley suggested that instead I write about something much more difficult…. me. Me and my experience during the difficult periods when CF is acting up.*

Honesty & Truth

I opted to keep the theme of whitewashing. It betrays perhaps my greatest and most pathological coping mechanism in regards to the effects of cystic fibrosis in our lives. I have a tendency to whitewash difficult situations.  My default is to slap an “everything is ok” response on any and all inquiries from friends and family, and also on my own internal monologue. “She’s doing ok today….”  Or “I’m doing fine… everything is great.” These statements mask the truth. They whitewash situations filled with fear, uncertainty, risk, and powerlessness.

Ashley’s recent hospitalization was a trying one. She had great care from the healthcare team, and the hospital staff is always very kind and gracious to us. But Ashley’s health was at the worst of her lifetime during the hospitalization. Three days after her surgery and bronchoscopy, Ashley spiked a temperature of 102°F. I’ve never been so scared. She had been on antibiotics for the past five weeks… what could be causing a fever so high? Is there a new infection in her lungs? Has the infection spread to her bloodstream? Will her PICC line have to come out? Could she be having a pulmonary embolism? Will she be ok? Will her oxygen saturation stay up? Will she lose the lung function she worked so hard to gain over the past 2 years? Will she be able to come home soon and make our house a home again? Will she be able to keep doing what she loves in practicing, performing, and teaching music? Will she have energy and time for me?  

Rather than dwelling in the uncertainty of these 

fears, I do what I am all to good at- convince myself that “everything is going to be alright.” Whitewash the situation to make myself feel more at ease. Hide the fact that I feel powerless and helpless. Betray my fears of uncertainty.  Don’t let anyone see that this is difficult and trying.

I am not as brave as Ashley. Rarely do I feel the courage and conviction that she displays every day as she faces cystic fibrosis head-on, with honesty and relentless hope. While she faces the difficult and sometimes ugly truth that is CF , I cower behind a whitewashed façade, blindly hoping the troubles and trials will go away.

Yesterday, Ashley’s lung function was 33%, her lowest ever. It is declining rapidly. I am afraid for her. I am afraid for our life. I am afraid for our future.

Sometimes there just isn’t enough paint. Perhaps this is a situation for some cleansing tears. Stay strong,  Ashley. Breathe bravely. I believe in you, I will be here, and I love you.

What are you trying to whitewash?

Watching the World

I sit within the walls of my hospital room and peer out into the world.  Snowflakes dance across my window as I yearn to breathe in the crisp cold air I know whirls beyond the glass.  I touch the window hoping to drink in a bit of that fresh air through my fingers: hoping to breathe in some life from the outside world.  

As I sit within the walls of this hospital and watch the snow fall, I cannot help but think about all the incredible people I have in my life and all the amazing opportunities I have been gifted. I find myself reflecting on memories, dreams, the beautiful and meaningful gestures of people, conversations, the new and the lasting relationships I am so lucky to have: the life that fills me.  It is weeks like this I am reminded just how beautiful my life is, and how grateful I am for every breath and every person who makes them memorable. 

Empty Halls and a Life all My Own

Being in the hospital is always both a mental and physical battle.  As I sit within the walls of this hospital room I can't help but think of how the world continues on as normal, regardless, of where or what I am doing.  Time never sits still.   I look out my window and watch the snow swirl around the people as they come and go from the hospital: leaving footprints in small drifts of snow.  Throughout the day many more people make the trip to and from the hospital entrance: always in a rush to get to the next place: never taking a glance at the sky and its falling beauty.  As night descends the hospital becomes quiet.   

But, I am still here.  I am still locked within these walls.  I cannot go home to my boys, to my life, to school, to my friends.  For a few more days this is my home.  But honestly as CF progresses this place will become more and more my home.  It's filled with the most generously caring people and My Team who I trust with everything I have left.   So, I put my shoes on, grab my mask [CF guidelines], and take off to explore the rest of the hospital campus.  As I walk the empty halls I realize how during the day these halls are filled with people doing their jobs, helping people, saving lives, but tonight Mark and I are the only ones what seem to be on the entire hospital campus.  Everyone is home, tending to their lives: with family, friends, and living as if time nor CF has any bearing on them.

The boys came to visit.

I get back to my room, send Mark home to the boys, and find myself staring out the window again thinking about life.  I think about how the world continues on no matter how long I am stuck behind these glass windows and walls: life continues to move on.  It's mentally difficult for me to be behind these walls.  I feel I am suffocating, I am constantly wondering what I am missing out on in the world, if I am being forgotten, if I am making any difference, or just adding to the worry of the people I love.   I wonder what I am doing to Mark's life, how I am stealing it from him.  What a different life we are living than we had originally dreamed of.  How unfair it is to make him see me this way: hospitals, appointments, PICC lines, countless rounds of antibiotics, PFT's, cocktails of pills, side effects, exhaustion.  I think it's harder for me to watch him, watch me go through it all.  He tries to be strong, but I see how much it all hurts him, and how scared he really is.   As we walk together through the empty halls of the hospital, I am thankful for the mask that hides my heartbreak.  

Flurries

You cannot watch a snowflake freely fall from the sky and know exactly where it will land.  Nor can you chart the exact journey of your life and where it will lead you.  My life is like a beautiful snowflake dancing upon the crisp air, never knowing its journey or where it will land.

This past week I underwent Sinus Surgery and a Bronchoscopy.  Both surgeries went great, but it was the days following the surgeries we had to be concerned about.  After several days in the hospital I was hoping to rejoin my normal life outside in the world, but my body had other plans.  Monday morning I spiked a 102 fever.  Things didn't look good for me making a case to go home, but don't think I didn't try!  A PFT  [lung function test] was done and had plummeted from the previous week's 50% to 37%.  Another big factor not allowing me to go home.   Treatment plans were evaluated and changed, and a new course has been charted.  My body seems to get better at fighting me every time, but my mere will and strength of mind will always be stronger.  It's time to fight. 

Today, I am so grateful for My Team of pulmonary doctors, ENT, nurses, pharmacist, techs, receptionists, and respiratory therapists who I daily owe my life to: who have all so graciously made me feel like a special part of their lives.   The most gracious and heartfelt gratitude to each of them, always.  Thank you.

My life may be made up of flurries of snow that dance across the frigid South Dakota air, creating a beautiful journey to its destination.   Life has to be shaken up a bit in order for the snow to dance.  This is my life.  Every day is beautiful.  Every breath is a gift.  Love to each of you.

Breathe in that life giving brisk air today, for me. 

Thank you all for the wonderful thoughts, encouragement, cards, messages, and beautiful flowers: they all mean more than you know.

Invisible

Cystic Fibrosis is considered an invisible disease, yet it is anything but.  Meaning, I look perfectly healthy to the unknowing eye, while silently a battle within rages.  CF may be concealed beneath the façade of my body, conveniently hidden from the world around me, but underneath it all it is a relentless disease trying its best to undermine me from within: trying to silently steal every breath.

I've spent a majority of my life keeping any signs of CF concealed from the world around me: hiding my dark eyes and pale skin beneath pounds of makeup, wearing clothes to hide my barreled chest, being conscious of how much I am coughing in public, wearing long sleeves to hide a PICC line, and mindfully deflecting attention from myself in hopes of protecting the ones I love from the realities of CF.   CF may seem invisible to the untrained eye, but it is not.  It's a silent, yet deadly force that affects the lives of so many in my life.

What Lies Beneath

As my CF progresses, it is becoming more and more difficult to conceal.  It may be still invisible to most of the world, but as I look in the mirror, it's anything but invisible. I see CF peering back at me through my own tired, sunken eyes.  I see it in the eyes and faces of the people close to me: a tinderbox of emotion bursting within the silence of their gaze.  I fear that they can see straight into me as our eyes meet. I fear they can see the mess of emotion churning within me, the exhaustion, the relentless war reeking havoc within: that my body is betraying me.  But most of all, I fear they will see how weak I truly am.  

This morning things are as usual: I will go out into the world with makeup carefully painted upon my face to hide the exhaustion that darkens my eyes and paleness of my skin.  The world will see me as healthy, never hovering for a minute on the thought that each breath I am given is such a gift.  CF will be invisible.  

But this afternoon I will walk through the doors of the hospital and be embraced by people I so greatly love and trust with my life.  People who see and know the invisible side of me: my CF Team. People who work so tirelessly to give me another tomorrow, who so endlessly support me every day in every part of my life.  People who help pick up the pieces as I continually try to max out every ounce of life.  My Team never gives up hope.  For each of them, I will always be so truly grateful. 

So, with the guidance of my CF Team, I will be undergoing sinus surgery and a bronchoscopy this afternoon.  I shall be having a bit of an "inpatient retreat" as we monitor my lungs post anesthesia and post surgery. 

My Beautiful Life

It still seems unbelievable to me at times, that my body is literally silently destroying itself from within.  For the most part, my reflection tells me there can't be anything possibly wrong, or if I see any signs of CF, I do my best to simply cover them up.  If it is invisible to the world and to myself it doesn't exist, right? But when I am faced with the images of what lie beneath this façade, the pain, and signs of sheer exhaustion, I am forced to know a different truth.  Invisible or not, I will always have hope that it someday will be completely invisible. 

This morning I will put a smile on my face, be grateful for every moment, every person, and every breath life has granted me.  I am grateful for the life I have been given: the visible and invisible.  Today is just another part of my beautiful journey.  Love to you all. 

What is "invisible" in your life?

Say Anything

Words: what incredible beauty and meaning they can hold.  They are the truest form of expression born out of the very core of who we are.

The simplest groupings of letters can hold such power: they can inspire, evoke laughter, bring tears to our eyes, and become lost in emotion.  They can fail us at times: when there simply seems to be none worthy of what we may feel.  They can also be a source of strength when we have nothing else left. They can be given, and they can be received.  They can change the world, and they can bring about change within ourselves.  Words and the feelings they evoke do not merely die, but live on forever long after they have been shared.  At their very purest form, words can be an irreplaceable gift to each of us.

Think of words that you share every day.  Do you realize the impact and weight of each of those words?  What words and conversations are still living within you?

I spend a lot of time reflecting on words: the words of myself and the words that have been shared with me by the dear people in my life.  Little do they know just how much their words mean to me.  Little do they know how much of what they say lives deep within me: giving me hope, assurance, and strength.  I only hope I have shared words of goodness and love, just as I have been so generously gifted by those in my life.


The Lasting Power of Words
My dear friend, Stephanie, understands just how powerful words are to each and every one of us.  She has built her life upon words and helps them live on forever.  She lives so very passionately, and I am so incredibly lucky to have her in my life.  Her sassy personality, genuine love for life, and words of honesty have all impacted my life so beautifully. Stephanie created and owns a business called, Say Anything... Jewelry by Stephanie Wilde.  She has dedicated her life to hand stamping beautiful, one of a kind pieces of jewelry rooted in personal meaning: different and unique to every person whose words kiss each special piece.

I am so greatly humbled by the generosity of Stephanie and to be a part of her creativity.  Several months ago we came together, collaborating on a one of a kind Breathe Bravely line that would be exclusively made by Say Anything.  What is even more incredible?  40% of all proceeds from the Breathe Bravely line will go directly to the Cystic Fibrosis Foundation.  Each piece is hand stamped and created just for you: no two the same.  How amazing.

Each piece has the words "Breathe Bravely" and the symbol of the arrow.  Why the arrow?
The arrow symbolizes my journey with Cystic Fibrosis:

"An arrow can only be shot by pulling it backward.  So when life is dragging you back 

with difficulties, it means it that it's going to launch you into something great, 

so just focus, and keep aiming." -unknown. 

What a gift Stephanie has given me.  Because of her, the two simple words, "Breathe Bravely," will live on forever while giving each of us another chance at tomorrow.

Order yours, wear it proudly, and breathe bravely for every person impacted by Cystic Fibrosis. Love to you all.


What words would represent your life's journey at this moment?


Click on the heading to view and order the Breathe Bravely Line:

Breathe Bravely Bangle Bracelet

Breathe Bravely Necklace

Breathe Bravely Keychain

The deepest gratitude to my beautiful friend, Stephanie.  Please take a moment and look at her beautiful works, and how she keeps words alive: Say Anything... Jewelry by Stephanie Wilde

Living Memory

The Fall season is at its prime.  Everywhere I look there are hues of beautiful yellows, reds, and oranges. You can’t help but be awe struck by the beauty of the season and its ability to be so vibrant.  

The past few weeks in South Dakota have been some of the most beautiful: endless days of sun-kissed perfection bookended by cool, crisp nights and mornings.  I wish they would never end.


I am so thankful for these warm days where the sun still kisses my cheeks and I am reminded of the beauty in which surrounds me.  The explosion of Fall color is a beautiful finale to the song that is the cycle of life.  Soon, the trees will drop their leaves, left barren.   When the wind whips through their branches there will no longer be the sound of rustling leaves, but only silence.   Rays of sun upon my face will be replaced with the bite of cold air as I anxiously await the first glimpses of Spring and signs of new life.  As for today, I will be grateful for Fall's embracing beauty and the brilliance of life it represents.   

A Life Lived

Sixteen years ago, at the age of 17, my brother, Nate, died of complications associated with Cystic Fibrosis.   It’s funny how days stick in your mind no matter how many years pass between.  If I close my eyes I can suddenly become that 11 year old girl again.  I can see the color of the leaves on the trees, the faces of my parents, the frost on the ground as we stood next to his grave, the sun trying to pierce through the heavy clouds, and I can feel the crispness of the Fall wind against my face.  I am filled with the same questions, fears, and guilt 16 years later.

Those years I had with Nate seem like a completely different life: they almost don’t seem real.  For a long time I pretended those years didn’t exist.  I still do to a certain degree: always keeping memories, questions, and emotions at a safe, manageable distance.   Maybe it has always been a way for me to live conveniently in denial about my own reality, and the deep connection I will forever have with Nate and CF.  It still pains me to think about those years: what I saw, the suffering, the guilt I still have in regards to my own health/life in comparison to his, and witnessing the deep heartache of my parents.

A Living Memory

As much as I have tried to silence that part of my life, it is ever present.  Nate is ever present.  His memory and life continue to live on long after he took his last breath.   When I look in the mirror I can’t help but see him staring back at me through my own eyes.  He is alive in the way I smile, my laugh, and in each breath I feel pass through my lips.  

The memory of Nate is still alive for so many people.  He touched the lives of so many: more than I ever could have realized.  Little did I know when I was a child just how lucky I was to have all those people in my life as well.   It's been incredible to realize how those who so impacted Nate's life have also shaped my life through the years: the nurses, the respiratory therapists, child life specialists, and our doctor who became such a vital part of our family.  One of the most amazing things about this blog?  Hearing the stories of Nate and how he impacted the lives of so many people: how his memory continues to live on.  It's been incredible for me to witness another side to the life I thought I knew so well: to hear and look at his life through the eyes of those whole loved him so, and to gain an understanding other than mine as an eleven year old child.

I often find myself playing with the "ifs" of life: wondering what my life would be like if he were still alive, if CF had never entered our world.  Would we be close?  What would holidays look like?  Would he be in love?  Have children? What would our childhood have looked like without CF?  How differently would both our lives have played out?  How different would we be as people?  What if he had been given the same life saving chances that I have been given?  Would that have made any difference? Will my own journey with CF follow his same path?

The Beauty

There is beauty in every life: every breath that has been breathed.  The leaves may soon fall, exhaling their last vibrant breath as winter steals their radiance, but the memory of their colorful Fall beauty will live on, having touched each of us. The magnificence of each color is a reminder of the brilliance of our own life, lives of those we love, and the memory of those we've lost along our journey: each different, but each just as beautiful.  I am thankful for these sun stained days, the vibrant colors of Fall, its finality, the gentle reminder of just how beautiful life is,  and to passionately love every breath.  Love to you all.

Here's to you, Nate. 
Whose beautiful memory still lives on in you?

Irreplaceable

[Blog entry created by Mark Bonnema]

“Lover….”

That is one of our endearing names we use for each other. It usually evokes the tone “I have something to tell you, but please don’t be mad.”

In this case, the something Ashley wanted to tell me was that she had lost her wedding ring. She continued, saying, “I’ve checked each of the twelve places I usually leave it…”  Yes, that’s right… TWELVE places she may leave it throughout out our house. From the old phone cubby, to the soap holder, to the actual jewelry box, to the shelf next to her meds, to the top of the dresser and bedside table … a search of all the usual suspect places came up empty.

“Well, I am sure it will turn up eventually,” I said.

Eventually turned into weeks, and then months. Finally, a thorough search of the entire house was underway… still we could not find her wedding ring.

Luckily we had insurance. A couple calls to the agent and a few more to the kind, wonderful associates at The Diamond Room by Spektor, and Ashley’s ring was being refabricated with improvements. Lost, but not irreplaceable. Sure, the ring is not the original, but you would never know looking at the new one.

Perhaps you realize this, perhaps this is new news, but this is typical of Ashley. This is who she is. Things are prone to being misplaced in her world. This trait is part of what makes Ashley’s character. Its part of what I love and what drives me crazy at the same time. Bless her heart, if she loses the keys one more time….

Here’s the thing. Most objects are replaceable. It may be a nuisance to replace a set of keys or a wedding ring, but things and objects can be replicated and or replaced. Ashley, however, is anything but replaceable. There is no other Ashley, nor will there ever be another living, bravely breathing person with a heart and soul just like hers. She is unique in every way.

I cherish and adore every breath that she takes, realizing that the gifts of breath and life are a fleeting privilege, one all too real for Ashley.  What would I… what would we (including you, the reader) do if we were to lose Ashley? Who and how would that void ever be filled in our lives? We could search the whole world and never find another soul to replace the beautiful, brave soul that she is.

There is no insurance policy that can offer to replace or replicate Ashley. The closest thing we have is YOU.  That’s right. You are Ashley’s best chance at survival, longevity, and a continued chance at living passionately and bravely, bearing her soul for all to see.  When you support the Cystic Fibrosis Foundation, like so many of you have done over the past few weeks and months, you provide funding to support research. The research is getting close! For the first time ever, drugs are being delivered at the genetic level that are allowing persons with CF to live symptom free! CF no longer rules their lives. It no longer robs them of the gifts of breath and life. It no longer threatens to steal our loved ones away. But the new drugs only work for a select few persons with specific genetic defects. More research and development is needed to extend the benefits of these life-saving, disease CURING drugs to all persons with CF.

Understand now? YOU are part of Ashley’s insurance policy… the closest thing we have to keeping her heart and soul here on Earth with us for as long as possible by funding research that can –and we believe WILL save her life.

Ashley will go on losing things. It’s inevitable. We will continue to replace them as the need arises. But we cannot afford to lose Ashley. She is irreplaceable.

Have you paid your insurance premiums? Know where your wedding ring is? More importantly… how have you shown that you cherish that which is irreplaceable in your life?