Thursday, December 31, 2015

A Brave Journey

Bravery. It’s something that quietly dwells within each of us, giving silent guidance to every step we take and each dream inspired. It’s set free upon each breath that is shared upon our lips and embraced within every unknown possibility we take for granted. We call upon reinforcements in our most dire and desperate of states and generously share it with others when they are in need.


A Year of Remembering
As I take a moment to reflect on 2015 I find myself consumed by a single phrase: “be brave.” In one breath a year ago seems so very long ago, foreign, and like a dream. But in another breath it feels like it was just moments ago - that I could still reach out and touch it. The very core of who I am today is bound to those difficult days. Days filled with fear, heartache, disappointment, decisions, and moments consumed by tears. I’d be lying if I didn’t say it is still painful. The hurts stings like icy daggers deep within the depths of my being. At times I am paralyzed by a creeping familiarity that catches me off guard- feelings I’ve tried to banish from my existence. I try and forget such memories and the cold harsh realities of what CF is capable of doing. The recollection of how different today could be and the humbling realization of an always unknown and uncontrollable tomorrow consume me. As those memories vividly flash through my being, I do my best to push them from my mind – running furiously from the consciousness of CF.

Grace & Gratitude
On the other side of that pain is a beautiful grace and the deepest gratitude. Out of life’s adversity and pain comes unfathomable beauty. The life I have been given is more incredible than anything I could have imagined. A year ago I couldn’t have begun to tell you where life would lead me. But I had to bravely forge ahead – embracing every moment life was willing to give and dedicate myself to truly living. To love more deeply, risk more greatly, to never leave anything unsaid, be unabashedly me, be alive in every moment, breathe in every memory, be rooted in gratitude, and most of all, breathe bravely believing in life’s great possibilities. I alone did not do it but by the hands and strength of so many. I cannot fully appreciate my life today, the opportunities I’ve been so graciously given, and the people I love without remembering this past year. This is my life and to be grateful for it I must remember not only the joys but each brave step through the unknown adversities of CF. Each of those difficult days, moments laden with tears, and life-changing trials has led me to this very day, has molded me into who I am, and has given me some of life’s richest relationships and memories. And that is something more incredible than I could have ever imagined.


The pain of a year ago will always be present within me. I’ll always cringe and feel a sharp piercing in my side when it consumes my consciousness. But in forgetting I lose myself. I force myself to be still and open my eyes to this very moment. I quiet my racing heart and mind. I remind myself of the gift that is this very breath. As I find myself facing the dawn of another new year, I am immersed within waves of gratitude and the words, “be brave” reverberating through moments of the past and powerfully resounding within those of the future.

Just like last year I do not know what tomorrow will bring. But the truth is, none of us do. I do know, however, that whatever life offers we must be brave – never afraid to remember the journey that got us to this very beautiful moment in life while living bravely in today. And most of all, we must always be rooted in endless hope for tomorrow’s possibility. Here’s to remembering 2015 and the great possibility 2016 holds. Love to you all as we begin this incredible year together. 

Take a deep breath and hear the words “be brave” within every step you take.


Tuesday, December 22, 2015

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.