Day 30 - Breathe Bravely Challenge

Finding the beauty in every breath.

We all have them, those "firsts." When we look back on them it brings back a flood of emotion and memories. 

I drove past my very first apartment recently and couldn't help but be overcome with memories, sentiments, and emotion. What caught my eye was the gorgeous tree blooming out front. It was the most vibrant fuchsia I had ever seen. What made me sad was that I had never noticed it in the years I lived there. I had passed by that tree countless times and never once recognized the beauty that lied literally right outside my door. How much other beauty has passed through my life without me ever realizing? 

Seeing that tree did cause immense joy to bubble inside of me, causing a wide spread smile to still be set upon my lips. It caused me to think of some of the greatest people to come into my life. In those early moments I wouldn't understand just how meaningful, important, and life-giving those relationships would be and still are. I can't imagine my life without that first apartment and all those who experienced it with me: they've been a shaping force in my life and for that I am so grateful.  I just wish I would have realized all the beauty that surrounded me then. It's not until you can look back do you really understand and know the value of an experience.  Love to you all.

Think about your first apartment or house. What beauty did it add to your life?

Day 29 - Pinnacle

[Blog post written by Mark Bonnema]

When the end of a chapter of life draws near, many people feel a bit ambivalent – both satisfied for reaching completion of a phase of life and anxious about what will come next. Ashley is rapidly approaching the close of her chapter as a graduate voice student at the University of South Dakota. Many times within the same hour, or even the same sentence I hear both the excitement of anticipation and the anxiety of the next unknown in her voice and her words.

First day of grad school
August 2013

According to the Cystic Fibrosis Foundation’s 2012 Patient Registry Report, only 5.7% of adults with CF obtain a masters or doctoral degree. As the median age of survival increases and as we inch ever closer to a cure for this disease, I trust that this number will blossom in years to come. Opportunities for a “normal” life, one ripe with choices and filled with many chapters will be increasingly available to person’s living with CF as they age.

Two Years Full of Truly Living

As it stands today, Ashley’s pending accomplishment is exceptional. Regardless of her merits of a student, the mere act of investing two years worth of energy, time, and breath into advanced studies is remarkable. I remember when Ashley first began dreaming of graduate school and questioning if it was the right thing to do. We were nervous for her health, wondering if her lungs would meet the challenge. Despite some ups and some very difficult trials, I can now say with confidence that I am glad she undertook the challenge. I think it has been more life-giving than life-taking, as it has fed her mind and soul. Not to mention it has helped to recoup and keep her lungs in singing health.

What truly stands out to me as I think back across Ashley’s graduate school years is the amount she was able to accomplish in addition to her school studies and achievements. She has created and fostered more friendships over the past two years than I could dream of in a lifetime. She has created a heartfelt and honest blog that has reached and touched thousands of people. She has taught dozens of students both at the university and at our home and helped them to find a love and passion for music. She has been a friend, sister, God-mother, cousin, daughter, wife, and so much more to a great many people.

Fight to the Finish

The next two weeks (the final weeks of her graduate school studies) are going to be a great challenge for Ashley. She has an enormous amount of studying, preparing, and practicing to do before she undertakes a final graduate recital and completes comprehensive exams. It's been a great uphill climb, and the summit is within sight. She has nearly reached the pinnacle of this chapter of life. I pray her health and body hold out and give her this chance to finish strongly. We don’t know yet what lies ahead in the next chapter, but for now it's full steam ahead to the completion of graduate school.

To everyone else nearing the completion of a chapter of life and facing the challenge of a new chapter to come, I wish you all the best! Breathe bravely and enjoy the journey.

Ashley, you can do it: we all believe in you.

Day 28 - Breathe Bravely Challenge

Finding the beauty in every breath.

I strongly believe that you can see the beauty in anything, it's merely finding a way and choosing to believe. Some things might be more difficult to see, but the beauty is there, I promise. Or sometimes, you have to create it. 

Each morning, I dread taking the cocktail of pills that awaits me, but I know each one works to keep me alive for another day. But sometimes it seems to take everything I have to swallow that handful of rainbow colored capsules: their presence lingering long after they've vanished from sight. Where's the beauty in that you ask? Well, yes, it's in the fact that they help keep me alive, but it's also in the five year old me who has found flavored milk  from a local dairy to accompany my morning routine.

Yes, that's right, flavored milk: cotton candy, banana, orange, chocolate. I hate to say I almost enjoy my morning routine of pill taking. Ok, I wont go that far, but it makes it tolerable! The thick milk and flavor hide the taste and texture of each pill leaving me to focus on the beauty that each pill truly provides. Love to you all.

Beauty: find it, create it, see it.

Day 27 - Breathe Bravely Challenge

Finding the beauty in every breath.

This time of year is bursting with beauty. The desolation and bareness of winter has been replaced and clothed with vibrant life and magnificent color.  Everything has been reawakened: it all seems so alive. 

This spring the sky seems bluer, the sun seems brighter, the grass seems greener, the song of the birds seems louder, and the flowers seem to be exploding with more splendor than I have ever experienced. Everywhere I look I am left speechless at life's beauty. As the sunlight casts itself upon my cheeks I cannot help but be overcome with the deepest gratitude for life. I take a breath and feel the warmed air course through my lungs. There is no greater feeling. And for that, I am truly grateful.  Love to you all.

Step outside and soak up all the beauty of life that surrounds you. The world is alive and thriving all around: breathe it all in. 

Day 26 - Unexplainable Grace

The simplest of things can hold the greatest significance and beauty.  They can ignite a fire within, overwhelm us with gratitude, and revive the spirit of hope that dwells inside each of us. We can search far and wide seeking out beauty in the grandest of forms, but sometimes the most substantial beauty is in the simplest of existence.  

Simple Beauty

It's incredible how something as unassuming as a white piece of paper with a few numbers can carry so much meaning and beauty.  It really means so many things, but most of all that piece of paper represents the life within every breath I take. It represents the grace I've been given to love another day, sing another day, to laugh another day, to breathe another day. 

But it goes even deeper than that, it is a reflection of every person who has fought relentlessly not only for me, but all those with CF. That simple piece of paper is not just a representation of my life, but the fight against CF in its entirety.  It symbolizes the people who have lost their lives to CF and all those still fighting. The paper that I hold between my fingers is only possible because of the selfless army of doctors, nurses, pharmacists, family, friends, and complete strangers who refuse to give up hope. There are no words to convey the depth of gratitude that dwells within me for each of you. 

Gift of Grace

As I sat in the doctor's office this past week, I couldn't help but think about the last six months and the journey to this very moment. What a very different path my life could have taken, and how quickly it can all change. I think the hardest thing to comprehend and understand is why I was given this grace of time and health when so many in the exact situation as me have not received the same gift of grace. The most difficult thing about CF is there is never any clear reason why. CF doesn't fight fair, it doesn't make sense, it doesn't care about the loved ones it's stealing and the lives it's sacrificing. I am overcome with guilt and the desperate aching question of why. Why has CF shown me such grace? I feel so undeserving when I see how many incredible lives CF has ruthlessly impacted and stolen, but has spared me for another day. I sat there amidst the familiar sterile room thinking about all the other people with CF that have sat in the exact same chair. I thought about their dreams, their desperation to live, the heartache of their families and friends, their souls ringing with the simple plea to just breathe. With these thoughts pouring through me, a greater passion was ignited within to fight not for myself, but for every person impacted by CF, so that they too, may be given the gift of time. Because I have been shown such grace, I cannot waste a moment of it. 

I know the time will come when CF will not show me such grace again. And no matter the size of the army fighting beside me, it will mercilessly steal every breath. When that time does come, whether it be tomorrow, months, or years from now, I want to know I did everything I could to pay the goodness I've been shown forward. I want to live gratefully in each moment and for each person who has filled every grace given breath with beauty. With this grace I have so graciously been gifted, I will fight. 

It might be just a simple piece of paper, but it holds so much beautiful significance and power. It ignites a passion to fight, an insurmountable gratitude, and a hope for tomorrow that simply cannot be extinguished. Love to you all.

What grace have you been shown?

I ask you to join me in this fight. Walk, donate, and be a voice for all those impacted by CF.

Click to join Team Ashley & Fight for all those impacted by CF.