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?

The Greatest Gift

The worth and meaning of a gift do not come from the size of the box, its monetary value, or even the ribbon that adorns it.  Its meaning comes from how it makes you feel inside as the recipient and as the giver.  The greatest gifts are not boxes filled with things, but beautiful presents that hold so much more: love, kindness, selflessness, and gratitude.  They all make up the beautiful gift of life. 

This Christmas I have received the most beautiful of gifts.  This gift cannot fit in a box, nor can it merely be purchased: it is one of a kind and irreplaceable.  What is this magnificent gift? My life.  

Our Life

As I hand Mark a present and watch his fingers so gently tear off the wrapping paper, I can't help but be overcome with the thought of how different this Christmas could have been, in so many ways. A month ago, CF annihilated our life.  Sure, CF has always been present in our life, but never has it threatened to steal it all so quickly: to unabashedly wreak havoc on everything we know and love.  To make our life almost unrecognizable.  To be confronted with some difficult questions, realities of CF, and the possibilities of what the near and distant future might look like.  My eyes brim with tears as I think about the last month, and what it all means: the gift that is life and the people that make my days so beautiful.  Mark looks up at me and smiles, and I am reminded how truly wonderful my life is, CF and all. 

In the course of a month my lung function has steadily increased despite a new bacteria making its home in my lungs: adding itself to the already resistant team of bacteria trying to undermine every breath.  I am so grateful to my CF team for literally giving me every breath and continuing to fight with me and for me.  A month ago I couldn't walk up a few steps, take a shower, carry on a conversation, or merely walk across the room without gasping for air.  My body has been so ravaged by CF, but each day I continue to get stronger, and am so very grateful for each percent of lung function gained.  I know those devastating days will come again, and I don't think I will ever be ready for them.  I know how quickly everything can change again.  But today I celebrate each victory: walking up the steps, singing a few lines, and any signs of winning this battle against CF.  It's the most amazing gift: the gift of life.  

The Perfect Gift

This gift I have been given is immeasurable.  It is priceless.  It is irreplaceable.  It cannot be simply wrapped in a box, adorned with the most ornate bow.  This most extraordinary gift is my life: made up of beautiful breaths, unconditional love, and endless gratitude.  Love to you all.

What gift have you been given that cannot fit in a box?

I'm Dreaming...

It's quiet in our house tonight. The world is asleep.  I sit curled up on the couch with a blanket next to the window, looking out into the world.  I've come to treasure these moments. They have become my place of escape and dreaming as the world beyond my walls sleeps peacefully.  The warm, soft lights from the tree, the comforting flame from the fireplace, and the streetlamp outside my window all cast a warm beautiful glow upon my cheeks.  In the light of the streetlamp, I can see the rain that began the day has turned to a light snow.  Will it be a white Christmas?  I sit, immersed in the warmth of light and love of this season, drinking in every ounce of beautiful life: dreaming again about tomorrow's possibility, and giving thanks for today.

Past, Present, Future
The lights from the tree reflect back into my eyes, as if we are having a dialogue.  I think about this time of year and what it means: friends, family, memories.  I think about past Christmases, this Christmas, and ones yet to come.  As I dream of past holidays, celebrations, or special memories, I find myself thinking about how healthy and resilient my lungs were and how I took those days so for granted.  I am so very thankful for each of those wonderful memories, for they have made me who I am today.  Most of all though, I am so grateful for this Christmas and all that it represents.  I stare back at the warm glow of the lights in the tree, waiting for answers and guidance to the questions and dreams I have stirring in my head about the days to come.  The lights from the tree fill my future with the light needed to guide me on my continued beautiful journey.

Each day I gain more strength, a new love for life, and am filled with the appreciation for dreaming of tomorrow and living for today. This last month has been the most terrifying, life changing, and emotionally devastating.  Yet, it has been filled with more good than I could ever know.  Amidst the desperation to merely breathe, I have been filled with so much life.  With each breath, my gratitude for all the beauty and people who fill my life only deepens.  As I sit amongst the glow of the fire, my heart is warmed thinking of the amazing people and the immense good I have in my life.  I think of old dreams, new possibilities, and what the future may hold.  I think of taking each day as it comes gracefully and being most thankful for every moment.  I think of every beautiful person that has made this Christmas season so full of life: I am beyond grateful for it all.

Unexpected Beauty
The world awoke to a slight dusting of snow this morning.  It wasn't the complete blanket of snow I was dreaming of, but it holds a beauty and message all its own.  New memories will be made today, and the dreams and hopes of this Christmas and those yet to come shall be brightened by today's falling snow and the light and love of the season.   I am so truly grateful for the beauty that fills today, and what tomorrow's journey may hold.  The light and love of Christmas will forever live in every beautiful breath I am given.  Love to you all.


Let yourself be immersed in the light of the season: filling you with beautiful memories, gratitude, and endless dreams. 

Living

The most beautiful moments in life come from taking risks, making every breath count, and choosing to live.  I mean really live.  To be present in every moment.  To feel: love, pain, heartache, joy, gratitude. To feel: everything.

As I stare into the candles that cast a beautiful glow upon my cake, I think about what they really mean.  As I take a moment and look around at the people I love next to me, I can't help but wish to stop time for just a moment: to imprint the feeling of this very moment forever into my memory.  I look back at the candles flickering on the cake and and am weighed by the meaning of this birthday and all it represents.   Meaning for the past, the present, and the future.  It represents life and every moment I've been so graciously given, and every moment I have yet to be gifted.

Endless Hope
For a moment I didn't want to blow out the candles.  I wanted to bask in the glow of their hope and the gracious gift that I had been given yet another birthday.  I just wanted to exist and be thankful for being allowed this very moment, for all the people in my life, and how completely beautiful it all was.   But I knew that taking in that breath and blowing out those candles also represented another day CF had not won.  It represented the beauty of tomorrow, my next birthday, and the hope that can never be extinguished.

It would be an understatement to say that I have been overwhelmed with emotion these past few weeks.  The fragility of life, the incredible love, generosity, and support of so many amazing people, the realities of CF, decisions about the future, and such immeasurable goodness amidst uncertainty have all sent endless tears streaming down my cheeks.  These past few weeks have proven themselves to be stronger than my ability to contain my emotions: leaving me to feel every moment, relive every memory, and whole-heartedly give thanks for the beauty and people life has given me.  I have been gifted beyond measure with such beauty and goodness.

A Box of Good
For my birthday I received a box from a dear friend.  In that box contained dozens and dozens of envelopes.  But really, it contained so much more: it wasn't just a box of birthday greetings, it was a box of genuine selflessness and complete beauty.  It was a box of life and a celebration of every beautiful person that makes my life so incredibly amazing.  The morning of my birthday I opened the box and took out the first card.  I read it, only to put the lid back on and be overcome with humbling tears.  Tears for the past, the present, the future: all of them rooted in gratitude.  How did I deserve such goodness?  Have I shared any good?


Days later, I have finally opened the last card: no tears, just a deep love for life and the people I am so incredibly lucky to know.  Laughter filled my lungs and an inner smile was imprinted on my heart.  I have been gifted beyond belief.  The candles on my cake represent the life I have lived and the life I have yet to live: all a beautiful gift.  They are all filled with immense hope and goodness.  Each day I am stronger, more grateful, and filled with more love.  Thank you from the bottom of my heart to all who celebrated with me near and far: it will be a birthday that will live with me always.

A most special "Happy Birthday" from the wonderful South Dakota Chorale

Here is to a beautiful year 28.  I promise to live in each moment, be present in every beautiful breath gifted to me, and most of all, be grateful for it all.  I will truly live.  Love to you all.


Are you living? I mean really living?

All You Need is Love

[Blog entry written by Mark Bonnema]

“You can’t live on love…” This phrase passed down from generation to generation is often spoken with intent to motivate and spur young couples to make sure they consider life beyond their intensive affectionate stage and ensure they have the financial means to pay their bills and begin life largely self-sufficiently. But what happens when life takes your ability to work, your vocation, and means of livelihood and warps and twists them like lawn ornaments in a tornado? What happens when it seems all you have left is love?

Ashley is a fighter. A brave, fearless, often blindly determined fighter. Tell her she cannot do something and she will work all the harder. Music, schooling, teaching, writing, maintaining extensive friendship networks, she does it all with grace and ease. I am often amazed and even a bit jealous with how easy she makes being successful in life look. The recent exacerbation of Ashley’s lung infection (a chronic part of living with cystic fibrosis) has taken its toll on Ashley’s ability to make music, teach, go to school, and even maintain close friendships beyond text messaging. It's heartbreaking to see the activities she loves so much in life lie just out of her reach. Her health is keeping her tired, worn down, short of breath, and fighting just to heal. There is no time left for her to welcome students into her studio, to practice for her graduate vocal recital, or to sing with her favorite group of singers (the marvelous South Dakota Chorale, of course!).  Beyond breathing and trying to fight infection, sometimes it seems all Ashley has left to live on is… love.

Throughout the years we have dated and been married, Ashley’s health trials have provided difficult experiences that have taught us many invaluable lessons about how to live life. Take nothing for granted. Live fully today, but be prepared for whatever tomorrow may bring. Never give up. And finally, treasure your loved ones, hold them close – the time may arise when you need to lean on them and allow them to hold you close in return. This last lesson is one we have been experiencing daily over the past few months. As Ashley’s health has declined, we have not been able to keep up our lives as usual. School and work have taken backseat to getting Ashley through each new day. Teaching and practicing music have become dreams of treasured life-giving ventures Ashley hopes to return to someday. Cooking, dishes, laundry, decorating for Christmas… again, secondary to making sure Ashley is able to maintain her health. It seems we have been forced into a situation of “living on love.”  

                

Fortunately for us, we are blessed beyond measure. We could never count, add, figure, or determine the amount of support and love we have received from our family and friends. When life was turned upside-down and we found ourselves with an hour’s notice before heading to the hospital in Minneapolis for two weeks, nearly everyone we knew reached out with offers large and small seeking to help in ways we never knew possible, and most of all, ensure we knew we had immeasurable love and support. Blessing is a word with new meaning for us, as is the phrase, “living on love.”  When forced to live on the love, generosity, and kindness of others, the phrase takes on a meaning as beautiful as a glimpse of the sun in the mid bleak winter. Thank you to each and every one of you who have helped to fill this current time of uncertainty, fear, with love, support, laughter, and joy. You are incredible.

  (Ashley singing a few lines for the first time in weeks.)

Look in the mirror – you are incredible. Thanks for your love.

Immeasurable Gain

In the last two weeks I've lost a lot: tears, strength, my grace filled stoic composure, time.  My strong secure façade has been broken down and beaten to someone I hardly recognize at times.  At times in the last two weeks I've had to become completely vulnerable not only to those I so desperately have sought answers from, but to myself as well.  Slowly, I am regaining that presence and strength I have always defined myself by, but I know these last two weeks have left me forever changed.  Most of all I wonder, will everyone I love see these changes as well?  

The most terrifying realization though? I know what I experienced at the start of those two weeks is just a glimpse into what CF will do, and the chaos it will cause on my body and my mind in the future.  I can do it, and I will fight the future of CF with everything I have.  It's all part of my beautiful journey. 

Goodness Abounds

I may feel a sense of great loss in the last weeks, but in all honesty I have gained so much more than I've lost.  Amidst the loss I have gained even more beauty than I could have ever imagined.  Amidst the hurt and pain, I have never been filled with more joy or been humbled by so much goodness.  The amount of beauty in my life is overwhelming, the people in my life are astounding, and it just doesn't stop.  Everywhere I look the beauty outweighs the pain.  

There is so much good and beauty that fills my life.  From the wonderful CF medical team both at home and at U of M, who have shown me so much kindness, patience, and understanding: who are giving me every opportunity at living.  To the nurses, respiratory therapists, nursing assistants, and hospital staff who made me feel so very special.  I am so truly thankful for their kindness, but most of all I am so thankful to hear their own amazing stories and call them new friends.  To my dear friends and family who surprised me with thoughtful surprise visits, text messages, FB messages:  I am left only with tears of gratitude to give each of you.   The bounty of goodness just continues to overflow in my life amidst the heartache CF has caused these past two weeks and the realization of difficult decisions yet to come.  The selfless generosity and kindness of people is something I can only hope to pay forward.  I am blessed beyond measure and am in disbelief:  I don't possibly deserve all this goodness.

Home

After almost two weeks at the U of M, I got the "ok" to continue my current treatment and journey of recovery at home.  It feels like it has been a long road to get to this point, and it has taken a lot of patience, but the journey home yesterday was so completely beautiful.  Each day holds so much potential and I have so much to gain from every beautiful breath I am given. 

As we pulled into the driveway last night I was overcome with emotion.   Our house was aglow with Christmas lights adorning its peaks, the most beautiful garlands wrapped in welcoming beauty on each railing, and as I walked through the door greeted by my "boys" our Christmas tree was up and beautifully illuminating our living room.  What an incredible gift.  I stand overcome with emotion (ok, hysteria) as I feel so engulfed by the love and support of the wonderful people I am so lucky to have in my life.  Thank you will never be enough.

Unfathomable Gain

Amidst the loss I've felt in these past two weeks, I have gained so very much: more than I could have ever fathomed possible.  My heart is full, my life is beautiful.  Will the people in my life ever really know what a gift they are to me?  Will they ever know how the smallest of acts to the grandest of gestures has impacted my life?  Do they know how truly grateful I am for each one of them?  How their presence alone in my life is what has given my life true meaning and made it incredibly beautiful?  I hope you know how incredible each one of you is to my life. Most love and gratitude to each and every one of you.  

Life is incredibly rich with beauty.  Take a moment and look around.

This week I had the incredible honor of being published on the Huffington Post.  I am so humbled and in disbelief of the opportunity.  Life is so incredible.  To view the post visit: Huffington Post - The Art of Breathing Bravely

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. 

The Art of Breathing Bravely

One of my daily visits to the radiator heater in the lobby.

There is an art that exists within every one of us.  It creates depth, mood, and meaning.  It paints the very existence of life.  It is the art of breathing.

The past week has left me short of breath, words, and understanding, but with a wealth of tears, and the love and support of so many people.   I could not begin to navigate this difficult time, or the difficult decisions ahead without so much love and support.  I have been cared for so greatly, by so many.  For each of you, the depth of my gratitude is so very deep and endless. 

In the last week, CF has confronted me with some painstakingly harsh realities.  Realities I was not prepared to deal with, nor do I honestly want to deal with.  I want to go home to MY life: to teaching, to grad school, to my students, to my "boys," to singing, and to planning a future with no limitations. I want to go home to the life where I run from sun up to sun down knowing no moment was wasted.  I want to naively think of CF as something that I control mentally and can merely outrun with my will and adrenaline.  This past week has shown me a different course of life, and the realities in which I must face sooner rather than later: conversations I've only abstractly thought through, lung function numbers I've only imagined were possible, and a body that is betraying every dream for the future I've made.  

The problem with CF?  It doesn't play fair, it doesn't make deals, and it doesn't care about the life you want or have.  It's an ugly disease that hurts a lot of people in its wake.  A disease I've tried to protect so many people from, to protect myself from.  A week ago, I was forced to come to terms with what I had suspected was happening to my body: it was betraying me, and quickly.  For those of you who know me, I am all about making deals with CF, constantly trying to hold it at arms reach while I live my life built upon adrenaline.  Finally, I had no choice but to succumb to what was happening.  

Something wasn't right and I knew it.  I knew there was no merely "out willing" what was happening this time.  So, with my pride tucked away and fresh tears ready to be shed, I approached what lay ahead of me.  Little did I know exactly what this last week would hold and just how difficult it would be mentally and physically.  The problem is my mind is still running at 150 mph, but my body is running at 25 mph.  My mind and body are not communicating.  I am filled with so many questions of disbelief.  I have not had time to mentally adjust to the devastation CF has caused so very quickly.  I had prepared myself for the future, but the future being when I had set it to be: many years from now.  But today when I look in the mirror, or walk across the room, my mind does not recognize its own body.  Who is this person? It can't possibly be me.  How can I not catch my breath?  How can I possibly need oxygen? How can I only walk a couple of minutes and be forced to stop because my oxygen drops to an unsafe level? My mind and soul don't understand how this simply can be.  Will it ever understand? I don't think so.  

The amazing people at the MN CF foundation got me a puppy!

In the last week I've shed a lot of tears, to the point of hysteria at times.  I've always been relatively good at keeping my emotions in check and being strong, but this week has proven to be stronger than I.   The emails and words I've had to write this week were composed of some of my worst fears and disappointments.  I feel I've let myself down, but most of all let everyone else down.  I am being forced to look at the future and faced with making difficult decisions that could have a huge impact on the definition of what has always been my life: forcing me to reevaluate life and mourn the life I so truly want.  How do I prepare my heart and mind for this?  How do I keep from shedding endless tears?  I know whatever happens and whatever my future may look like, the art of every breath I take is utterly beautiful.  There is beauty in whatever life has to give me.  I must cling to every beautiful moment I am given and bathe in its greatness, regardless of what that looks like.  

I am so incredibly thankful for each of you, for your words of encouragement, messages, your prayers, your positive thoughts, surprise packages, and your unyielding strength through it all.  You all are so very amazing.  My life is filled with so much good.  All my love to each of you.

Breathe out the beautiful art that makes up your life.

*Monday overnight was spent in the ICU being desensitized to Zosyn.  I passed with flying colors.  Lung function and effectiveness of treatments will be reevaluated again on Thursday.  Other antibiotics and antifungals have also been slowly increased while watching the effects on the liver.  We remain hopeful, always.*

Words - guest post written by Jaclyn Aberson

A package arrived this past week. It was a beautiful red metallic envelope that at any normal time would cause me to bounce with excitement. 

But let’s be honest, this isn’t any normal time. I knew what awaited me in the package, and frankly, I didn’t want to face the joy that begged to be revealed. Literally. Inside that envelope was a pure white shirt with the word “joyful” spread across the chest in sparkly red script, selected for my fifteen month old daughter, Sutton, to perfectly match one that will be worn by her Godmother, Ashley, this holiday season. I just wasn’t ready. I just wasn’t feeling joyful.

Like many of you, I have been walking around with a lump in my throat for the past month. As Ashley, Mark and Ashley’s team do everything in their power to fight for her health, I do my best to go about my day. I feel so helpless, not knowing how best to support them and express the love I have for them. In these moments, I am incredibly thankful for the gift Ashley gave us last April: her words and the inspiration to find our own.

I don’t think Ashley could have predicted the impact and reach this blog would have when she began opening herself up to the world and sharing her life, her words. Breathe Bravely has come to mean so much to so many. The words she shares have come to mean the world to me, too. 

I cling to the words Ashley shares each week on the blog, the way she lives those words out and how she wants each of us to do the same. My house and my life are surrounded by her words and reminders of how life should be lived – fully. A note from her is nearly always present on my counter, expressing love and gratitude for friendship. A box in our living room that she gave to Sutton on her first birthday, with a note inside expressing the joy that it is to watch her learn and grow. Her endless supply of witty and glittery t-shirts for Sutton with important instructions like “Read to Me” and “Live Sparkly.” The glass snowflake ornament that for the first time hangs on our Christmas tree, reminding me of the fragility of life, the beauty of the season and the priceless words she gifted me with when she gave it to me. And around my neck and attached to Micah’s keychain, our cherished “Breathe Bravely” charms from Ashley, reminding us each day how Ashley lives while battling CF, and how we should live, too – bravely.

Yesterday I opened the beautiful red metallic envelope. The sparkly letters brought tears to my eyes. Tears of fear, but also tears of joy. I could not have imagined how the words Ashley and I now freely share could have brought us even closer together than we were a year ago. I wiped a few tears from my eyes, reminding myself of Ashley’s words to me via text last week when a picture I sent did not meet her approval: “And stop it. You look like you’ve been crying. No tears.”

Well, Ash, no promises about the tears. I do, however, have a few words for you: You are so very loved. I know it shocks you how much people care about you, but the reason is clear. People, strangers even, care about you because you care about them. People care about you because you share yourself so openly and honestly in a world that is becoming increasingly shut off. People care about you because you are the strongest person they know. People care about you because you find joy in the darkest places. People care about you because you allow them to be honest with themselves. People care about you because you are you.

Thank you for sharing your words and yourself. I am so incredibly proud of you and thankful for you, for Mark and for your Sanford and U of M teams. I hope you feel the love, support and prayer that surrounds you. All of my love.

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