Grownup Christmas List

[Blog post written by Mark Bonnema] 

“Well I’m all grown up now…”  Ok, I know several of my friends and family may take exception to that statement, but at the least, I’ve grown up physically. It would be a bit odd to see someone my size sitting on Santa’s lap.  The line quoted earlier is from the song "My Grownup Christmas List" and goes on to say, “I’m not a child, but my heart still can dream.” As an adult, I somehow find the restraint each year to avoid crawling up onto Santa’s lap, but I certainly resonate with the notion that my heart still can dream.

Generally speaking, our Christmas lists tend to get a bit more abstract and immaterial as we grow older.  Time with family and friends, relief for those who are hurting, happiness, peace, and a host of other positive emotional states are among the things on our grownup list of Christmas wishes.

I am thrilled and overjoyed that within the CF community, many persons and families living with CF have received their Christmas wish this year! Advances in drug therapies and treatments at the genetic level, such as Kalydeco, and Orkambi are allowing some people with CF who have specific genetic mutations to live with a greatly reduced symptom burden. Breathing is easier, the threat of lung infection is decreased, lung function is increased, and life is improved! It may not come with a bow or ribbon, but these developments in treatment certainly have been a wish fulfilled for many people living with CF this Christmas.  

But not everyone is eligible for the new breakthrough drugs because they do not have the specific genetic mutation that the drugs treat. These people living with CF continue to hope and wish for a cure or definitive treatment this Christmas. They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them improvements in quality and quantity of life. Some are even left hoping and wishing that the next breakthrough will come before it is too late.  This is my grownup Christmas wish. I long with all my heart for Ashley and so many others also living with CF to experience symptom free living, to be able to breathe long and free and deep.

Sometimes wishes come true. Sometimes great and beautiful things happen to fulfill our adult Christmas wishes.  More often than not, however, it seems we are forced to recycle the same wishes year after year, as progress ebbs and flows, with fruition lying always just out of reach. Should we give up on wishing? Be "more realistic," or temper our hopes so as to avoid the disappointment of unrealized dreams? Certainly not.

I think that the ability to wish and hope is great gift in and of itself. Wishing keeps us looking forward, it allows our imaginations run wild, chasing an image of a better and more beautiful future. That which we allow ourselves to imagine, we can work together to build and achieve.  

So I’m all grown up now, but I’m certainly not done wishing and dreaming. My wish this Christmas is for a cure for all persons living with cystic fibrosis. Thank you to everyone else out there who shares this wish with me and continues to work so very hard each every day to help this wish come true…  we will keep wishing and working until CF stands for Cure Found!

What are you wishing for this Christmas?     

Give something special and memorable to someone you love. Donate any amount to the nonprofit Breathe Bravely in honor of someone and get a personal message sent to them from Ashley. How?

Step 1. Donate at www.breathebravely.org/donate

Step 2. Send Ashley an email at breathe.bravely@gmail.com with donor and recipient information.

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. 

To Live Boldly

There's a constant gripping burn within my lungs as I steal a breath and for a moment hesitate to give it back. A reminder that this life we are each given is only borrowed and filled with uncontrollable uncertainty. As I climb into my snow kissed vehicle and hear the door latch, I'm suddenly engulfed with the silence and weight of life. Uncontrollable tears stream from my eyes as a well of emotion pouring out from the deepest parts of my soul - a culmination of the incredible past month's events, the goodness that surrounds me, and the uncontrollable reminders of a life with CF. 

Winter

The words, "please no," dispel within every tear that finds its way upon my cheek as I sit paralyzed in my vehicle awaiting to take on the day. I close my eyes and take a deep breath – a silent prayer pleading for just one more. Each frigid piercing breath I take drenched in an overwhelming mix of grateful memories, present fears, and the reminder of an uncontrollable future. The rawness of the morning's unexpected awakening still stinging every part of my being. Awakened by coughing up excess amounts of blood set my lungs and emotions aflame - a reminder of my life with CF and winter's arrival. My mind instantly thinking of those I love and how CF is so unfair to each of them. 

Again, I take a deep breath and do my best to wipe away any evidence of tears. I make a few phone calls to my CF team and a plan is set in motion. I remind myself this is my beautiful life - the seasons will change and winter will always come. All I can do is continue living and embrace the uncontrollable realities of CF. All I can do is live honestly and boldly in this life I love so very much. 

I knew the days ahead would be tough both physically, mentally, and most of all, emotionally. I knew how far I had come since a year ago. How strong I was and how I didn't want anything to threaten this beautiful life I was living. I knew it would be hard to keep my focus without some reminder of CF and its realities invading my consciousness after such an unsettling event. I knew the pain and exhaustion my body faced in the days ahead as we dug out from winter's first spell. I knew the ruthless side effects of potent drugs that awaited me. Most of all I feared people would see and treat me as fragile. But I took a breath and reminded myself that I was alive in that very moment. That winter holds its own unique and renewing beauty. That I must merely put on my snow boots and boldly leave my footprints in the newly fallen snow.

So I returned home, went straight to my studio and sang. I sang to prove to myself I was still breathing. That I could sing the same as I did the day before. I sang to feel every breath enliven my soul. I sang to feel certainty in being alive. Woven within every note was a song of gratitude coupled with a pleading prayer for not only one more breath but one more song. A song that would reflect the beauty that lies in every breath that I'm given. I cannot control the realities of CF, but I can choose to continue living this incredible life boldly and without regret. 

Embrace

Life is uncertain - for every single one of us. We are all gifted with the same type of borrowed time, only different journeys. It's how we choose to embrace our journey despite its uncontrollable uncertainties that allows us to truly live. The most beautiful of snows envelops my city this morning. The restlessness of my heart is quieted for a moment and I breathe in the beauty of the season - embracing all its snow laden uncertainties while remaining rooted in gratitude for every beautiful breath I am given, the meaningful relationships that fill my life, and a steadfast hope in tomorrow. Love to you all.

How are you living boldly despite the snowy uncertainties of life?

The past week has been most incredible and far beyond something I could have ever imagined possible. Breathe Bravely is a reflection of each of you and your voice in my life. 

This newly founded nonprofit asks you to share your voice. 

This #GivingTuesday please consider sharing your voice with the mission and vision of Breathe Bravely. To read more about us and donate visit: www.breathebravely.org/donate. 

Giving Voice - A New Chapter (BIG ANNOUNCEMENT)

For as long as I can remember there has been this undeniable stirring inside of me. A restlessness that resides at the very core of who I am. It silently defines me from within, accompanying every breath I take.  It's a constant hum that resounds within. At times it's hardly detectable and it seems to unassumingly dance beneath every breath I take. But then that simple murmur grows into a boisterous cacophony of brilliant harmonies that seem to pour from every ounce of my being. What is it? The voice that lives within me and is born of the very breath that fills my lungs and renews my body. 

An Unstoppable Silence

We never know where that voice within us will lead, nor can we ever truly imagine where it will find its strength. In April of 2014 I began writing this very blog. It started as a way to share my life with those I love and give voice to the beauty that fills every breath I am given. But that voice grew beyond anything I could have ever believed possible and has been at the center of some of the most meaningful relationships and memorable moments of my life. It was you that told this voice it could do anything. It was you that helped unleash the song that I tirelessly tried to silence for so long.

At the very center of it all, however, is something that has tried to undermine that very voice - Cystic Fibrosis.

A year ago I thought the song that lived within me might be silenced forever. CF had mercilessly stolen my voice from within me, and I questioned the very person I was without it. The very thing that I felt defined me was gone. I never could have imagined the heartache, the pain, and the devastation I felt. But, I fought and through that exhausting fight I gained more than just my ability to sing again. I unleashed a passion that was untamable. A passion to share this voice – a voice reflecting every part of who I am, the beauty in my life, and the life giving song that leads from within.

Finding My Voice
Today, reflected in a voice stronger than ever, we are excited to announce the formation of Breathe Bravely as a nonprofit organization. We are dedicated to “giving voice to CF.” Learn more about us by checking out our website that just went live today: www.breathebravely.org
By launching Breathe Bravely as a non-profit organization, we can have a greater impact on building dialogue and awareness among our community while raising funds that support life-

saving drug development. More specific though, and unique to Breathe Bravely, is the development of programs that support CF research through the art of singing – something so very special and personal to me.  This program will lend itself to both physical and psychological benefits for those with CF. More information to come in the next weeks ahead. In all we do, we are giving voice to CF. 

Today is also very special because it is the day my first book, Breathing Bravely: Giving Voice to CF, becomes available.  It follows the first year of the blog, Breathe Bravely, and the tumultuous and uncertain seasons of CF. There are two different copies. One is a full color coffee table version that is a responsive journal. The other is a smaller black and white read through version. All proceeds to benefit the nonprofit Breathe Bravely. Available through our webstore and Amazon.  Meet & Greet Book signing will be held on Saturday, November 28 at Say Anything... Jewelry by Stephanie Wilde in Sioux Falls, SD. 

Defining Me

I could have never possibly imagined my life as it is today. I never could have imagined this voice from within finding such a powerful song composed within this life lived with CF. I have found a voice that defines ALL of me and its mission is to reflect the beauty that lies within every breath I’ve been given. I have found where my deep passion meets my true life. Let all of me endlessly sing from the voice that stirs deep from within. Immense love to you all.

Share your voice with Breathe Bravely.  

Learn all about Breathe Bravely the nonprofit organization at out our new website. Also order your book and check out our new winter clothing line!  www.breathebravely.org


The most sincere and heartfelt thank you to the incredible board of directors for Breathe Bravely and all the people who made today possible.  I will never adequately be able to convey the depth of my gratitude to each and every one of you.

To Just Be

As I walk outside, the cool crisp air of autumn stings as it touches my lips and pours itself into my lungs. Its brisk presence sending a familiar shiver down my spine. I close my eyes for a moment trying to hold back the tears that threaten to unleash my stifled anxieties of the season. The voice of a dear friend loops in my mind in an almost prayerful chant. The words, "this year is different" reverberate throughout my being. Emotion threatens to engulf me as the weight of each word and their deep fixed meaning stir within. I can feel the beating of my heart in my throat and feel the steadiness of my breath quicken. I become lost in the past and anxious about the future. I do my best to suppress these anxieties and hide them from the world, but at times they build to such an extreme that I feel as if I am suffocating. Every moment seems laden with these hidden anxieties- exposing my true insecurities and vulnerabilities to the world. Anxieties caused by a life lived with Cystic Fibrosis. 

I take a deep breath and do my best to rid myself of such crippling thoughts and anxieties. I take a moment to look at the world around me. To take in this very moment I have been given and let the past just be. To be hopeful in the future while still remaining rooted in this glorious moment. I remind myself, "I am breathing, I am alive, and I am thriving." 

Beneath the Surface

As I take in the beauty that surrounds me, I think about the last 365 days. I think back to the very day the realities of CF became so very real - the day I lay in the hospital post sinus surgery and bronchoscopy. I think about what we've all been through together. I think of how quickly time passes, yet the pain and heartache of this last year still feel fresh and new. You may not be able to readily see the wounds any longer of this past year, but they still live beneath the surface amidst every breath I take. I think of my life today, the possibilities that lie before me, and the people that have selflessly helped make this journey so very incredible. I think to myself - would today be as sweet or even possible if we all had not endured this past year and CF's unforgiving wrath? Would my passion and drive for tomorrow's possibilities be as fiercely focused? I don't know. Or has my potential been born from these adversities only to come to fruition by living through them? 

 

As I breathe in the brisk Fall air, my mind churns with the anxieties of the past year, but something catches my eye and consciousness. It's a beautiful rust colored leaf vibrantly interrupting the cold grey sidewalk. Its stark beauty reminding me of the beauty that fills every moment and every step of my life. Instead of being paralyzed by the pains of the past I am propelled forward by the resounding hope-filled words "this year is different" that live in every step I take and within every breath I am given. 

Hope-Filled Anxieties

Life is filled with endless anxieties and the beautiful struggle to balance the impact of the past, see the good in today, and live in the hope of the future. I will let the past just "be" while being rooted in gratitude for today. But most of all, I will live with an endless hope for the goodness that fills the next 365 days. Love to you all.