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.

Designing a Difference

It’s not the gifts themselves that make such an impact, but it is the selfless generosity and genuine love in which they’re given that holds so much significance.

While I was spending time at the U of M this past November/ December, I received an email from a most dear friend in which contained something that left me so very speechless. I remember opening the email, feeling my heart swell within the walls of my chest, and instantly clasping my hands over my mouth in disbelief.  I remember looking at Mark and saying, “you’ll never believe this” while tears streamed down my cheeks. What was this irreplaceable gift, this act of such genuine generosity and care? 

It was a brand new design created just for Breathe Bravely. 

With the guidance of my incredibly dear friend, Jaci, her husband Micah, and his amazing team at Lawrence & Schiller, this incredible design was created. It’s not only a reflection of me, but of every single person who is a part of Breathe Bravely. I am so excited to finally share this amazing gift with all of you.

The Significance of the Design

          

Breathe Bravely: 

Represents the strength and hope in every breath that fills us with life.

The Arrow: 

"An arrow can only be shot by pulling it backward, so when life is dragging you back with difficulties, it means that it's going to launch you into something great, so just focus, and keep aiming." – unknown

Since the beginning of this blog, I have strongly embraced the idea that my life with CF is like an arrow.  That with every set back, or difficulty that may be pulling me downward, it only means I am waiting to be propelled into something greater.  

Roses: 

Because Cystic Fibrosis is so difficult for children to say it has become known as “65 Roses" and a trademark for the CF Foundation. 

Because of You

I am so very excited to share this with all of you. This is just the beginning of some exciting things to come and none of it would be possible without the endless love and support of my dearest friends, Jaci and Micah, and the amazing generosity of the team at Lawrence and Schiller. You have given hope, shared love, and designed a difference that goes far beyond me: you are fighting for another breath for all those impacted by CF. Because of you, the arrow that is my life soars higher, farther, and with greater purpose. Love to you all. 

Who has designed a difference in your life?

  

Exciting Things Ahead

Want to stay connected with all the excitement happening? Make sure to add us on

Instagram: breathe.bravely  

Twitter: @breathebravely

Tenacity & Strength

The true strength and tenacity within ourselves are the sole make up of the people who hold us up, believe in us, and forbid to give up the fight when we are in need of saving.

As I sit across from one of my doctors at my appointment this last week, I was overcome with the emotional realization that I am not in this alone.  As I made light-hearted jokes about the future and talked about the tentative plans ahead, I knew the only reason I got to where I am today wasn't from me fighting CF alone, but from the multitude of doctors, nurses, pharmacists, friends, family members, and complete strangers holding me up, believing in every step of my journey, and always passionately fighting with me for another breath.   What an incredibly humbling thing to realize.  I wouldn't be here if it weren't for their relentless encouragement, steadfast support, and their commitment to doing everything possible to give me another tomorrow.

To Breathe
The last few months have been filled with endless IV antibiotics, countless pills, doctor visits, hospital stays, tests, blood draws, and the need for unyielding tenacity.  The last few months have held some of the most beautiful of moments and some of the most difficult.  At times, I thought I'd never feel like me again.  That with every setback came the panic and desperation to breathe, just for another day, month, or year: to merely live one more day in the life I love with the people I love.

I still feel that desperation to live, but today it is coupled with celebration.  At my appointment last week I had a FEV1(lung function) of 50%: almost double since this past November.  I have never worked harder and desperately wished more for that number.  To be able to breathe is simply amazing.  This is most likely where things will level off, but I will never stop fighting for more.

Testing the Waters
The direction and nature CF takes isn't clearly understood, nor can its future be clearly articulated.  What we do know is that with every ruthless infection and hit my body takes, it is harder to put the broken and shattered pieces of my health back together.  This shell of a body may have been left weaker and its resilience taking a brutal beating, but my determination and will are stronger than ever.  For the last 22 weeks (and counting), my body has been inundated continually with powerful cocktails of IV and oral medications in hopes of beating down the relentless drug resistant bacteria and fungus that are trying to steal my vitality, my strength, and my very future.  With that said, the time is coming in which the boundaries and limitations of my body without all these drugs needs to be tested.  I am filled with such a cacophony of emotions:
Gratefulness, for getting to this point in which I almost feel like me again.
Anxiety, for knowing the future is bound by the destruction of CF and the pain it will cause so many.
Infinite joy, for the relationships that have fed me and brought so much beauty to my life.
Nervousness, in wondering how long it will be before my body will betray me again.
Love, for the endless grace and kindness I have been shown.  
Hope, for the possibility of tomorrow.

I am so very grateful for those who have held me up through the hardest of moments, those who have celebrated each victory, those who continue to believe in my journey, and for those that have fought with me for every breath.

I am learning not to allow the past events to fill me with fear, or the unknown of the future to fill me with trepidation, but to live for the beauty that is present in this very moment.  CF may be progressively present in my life, but it will not rule by fear.  I will breathe bravely: continually renewed by the strength and tenacity that live within, knowing I am never alone in this fight.  Love to you all.

Each of our lives is filled with people who pour themselves into us, giving us strength and tenacity to endure whatever our journey may have in store.  

Thank them today.

Living Purpose

The question of whether or not our life has meaning or purpose is something that has stirred among each of us at some point in time and echoes continuously in the dialogue of our lives.

Is a life filled with purpose something we choose, or is it something that chooses us?  Is it something that dwells deep within, or is purpose something that uniquely seeks to find each of us? 

Finding Purpose
I've always passionately felt that the purpose and meaning in my life have come from striving to be a force of good, show love, and reflect the beauty of life.  Purpose and meaning live within every breath, every moment, and every relationship: we merely have to choose to see its presence.  Purpose and meaning are living and breathing within each of us.

Has purpose sought me, or have I been determined to find it?  With this new season of life set before me and the impact CF has so recently made, the weight of life's purpose greatly weighs on my consciousness.  I can't help but question my own understanding of what my purpose is and if I am truly fulfilling what I believe to be the meaning of life.  Have I shared goodness?  Love?  Reflected the beauty that is present within my life?  Have I made any difference? How can I give more, be a part of a greater good?  I feel these days that I've been shown much more good than I've been able to share, and that I've taken much more than I've been able to give.  I am overwhelmed by the goodness and love I have been so generously shown.

Meaning Amidst the Battle
I knew this current battle and road to healing was going to be a long and demanding journey, but I honestly didn't really believe it.  After all, I am the master of mind over matter.  There's simply no way CF would be able to keep up with me and my shear will and drive for life.  Right?  Honestly, I was wrong: my body has betrayed me.  I am at a loss for words at the ruthless power of CF and its ability to cause such devastation: violently stripping me of my strength, vibrancy, and resilience. After 16 continuous weeks of trying different cocktails of IV antibiotics and approaches,  my team and I are still doing our very best to fight CF and combat its current merciless attack.  I cannot begin to adequately express my gratitude to my team for their tireless dedication, time, genuine care, and commitment to not giving up on me. They've each gifted my life with so much meaning and beauty.  CF may be strong, but we will always be stronger.   My life has great purpose and meaning, and I will reflect the beauty of life no matter the battle I face.

CF may have drastically changed my life, but I will not let it change the purpose that I have found or the meaning that has found me. There is always purpose.  There is always meaning.  They are resonating within the dialogue of each our lives.  Regardless of what is happening in our lives, the battles we are facing, purpose and meaning are present in every moment, experience, and relationship great and small.  They are alive in every breath we take. 

Whether it is something I've chosen or it has chosen me, my life is filled with great purpose and meaning.  With every breath I am given, I will always seek to share good, show love, and reflect the beauty that is life.  Love to you all.

Open your eyes. Purpose and meaning are living within you and are present all around you.