Say Anything

Words: what incredible beauty and meaning they can hold.  They are the truest form of expression born out of the very core of who we are.

The simplest groupings of letters can hold such power: they can inspire, evoke laughter, bring tears to our eyes, and become lost in emotion.  They can fail us at times: when there simply seems to be none worthy of what we may feel.  They can also be a source of strength when we have nothing else left. They can be given, and they can be received.  They can change the world, and they can bring about change within ourselves.  Words and the feelings they evoke do not merely die, but live on forever long after they have been shared.  At their very purest form, words can be an irreplaceable gift to each of us.

Think of words that you share every day.  Do you realize the impact and weight of each of those words?  What words and conversations are still living within you?

I spend a lot of time reflecting on words: the words of myself and the words that have been shared with me by the dear people in my life.  Little do they know just how much their words mean to me.  Little do they know how much of what they say lives deep within me: giving me hope, assurance, and strength.  I only hope I have shared words of goodness and love, just as I have been so generously gifted by those in my life.


The Lasting Power of Words
My dear friend, Stephanie, understands just how powerful words are to each and every one of us.  She has built her life upon words and helps them live on forever.  She lives so very passionately, and I am so incredibly lucky to have her in my life.  Her sassy personality, genuine love for life, and words of honesty have all impacted my life so beautifully. Stephanie created and owns a business called, Say Anything... Jewelry by Stephanie Wilde.  She has dedicated her life to hand stamping beautiful, one of a kind pieces of jewelry rooted in personal meaning: different and unique to every person whose words kiss each special piece.

I am so greatly humbled by the generosity of Stephanie and to be a part of her creativity.  Several months ago we came together, collaborating on a one of a kind Breathe Bravely line that would be exclusively made by Say Anything.  What is even more incredible?  40% of all proceeds from the Breathe Bravely line will go directly to the Cystic Fibrosis Foundation.  Each piece is hand stamped and created just for you: no two the same.  How amazing.

Each piece has the words "Breathe Bravely" and the symbol of the arrow.  Why the arrow?
The arrow symbolizes my journey with Cystic Fibrosis:

"An arrow can only be shot by pulling it backward.  So when life is dragging you back 

with difficulties, it means it that it's going to launch you into something great, 

so just focus, and keep aiming." -unknown. 

What a gift Stephanie has given me.  Because of her, the two simple words, "Breathe Bravely," will live on forever while giving each of us another chance at tomorrow.

Order yours, wear it proudly, and breathe bravely for every person impacted by Cystic Fibrosis. Love to you all.


What words would represent your life's journey at this moment?


Click on the heading to view and order the Breathe Bravely Line:

Breathe Bravely Bangle Bracelet

Breathe Bravely Necklace

Breathe Bravely Keychain

The deepest gratitude to my beautiful friend, Stephanie.  Please take a moment and look at her beautiful works, and how she keeps words alive: Say Anything... Jewelry by Stephanie Wilde

Living Memory

The Fall season is at its prime.  Everywhere I look there are hues of beautiful yellows, reds, and oranges. You can’t help but be awe struck by the beauty of the season and its ability to be so vibrant.  

The past few weeks in South Dakota have been some of the most beautiful: endless days of sun-kissed perfection bookended by cool, crisp nights and mornings.  I wish they would never end.


I am so thankful for these warm days where the sun still kisses my cheeks and I am reminded of the beauty in which surrounds me.  The explosion of Fall color is a beautiful finale to the song that is the cycle of life.  Soon, the trees will drop their leaves, left barren.   When the wind whips through their branches there will no longer be the sound of rustling leaves, but only silence.   Rays of sun upon my face will be replaced with the bite of cold air as I anxiously await the first glimpses of Spring and signs of new life.  As for today, I will be grateful for Fall's embracing beauty and the brilliance of life it represents.   

A Life Lived

Sixteen years ago, at the age of 17, my brother, Nate, died of complications associated with Cystic Fibrosis.   It’s funny how days stick in your mind no matter how many years pass between.  If I close my eyes I can suddenly become that 11 year old girl again.  I can see the color of the leaves on the trees, the faces of my parents, the frost on the ground as we stood next to his grave, the sun trying to pierce through the heavy clouds, and I can feel the crispness of the Fall wind against my face.  I am filled with the same questions, fears, and guilt 16 years later.

Those years I had with Nate seem like a completely different life: they almost don’t seem real.  For a long time I pretended those years didn’t exist.  I still do to a certain degree: always keeping memories, questions, and emotions at a safe, manageable distance.   Maybe it has always been a way for me to live conveniently in denial about my own reality, and the deep connection I will forever have with Nate and CF.  It still pains me to think about those years: what I saw, the suffering, the guilt I still have in regards to my own health/life in comparison to his, and witnessing the deep heartache of my parents.

A Living Memory

As much as I have tried to silence that part of my life, it is ever present.  Nate is ever present.  His memory and life continue to live on long after he took his last breath.   When I look in the mirror I can’t help but see him staring back at me through my own eyes.  He is alive in the way I smile, my laugh, and in each breath I feel pass through my lips.  

The memory of Nate is still alive for so many people.  He touched the lives of so many: more than I ever could have realized.  Little did I know when I was a child just how lucky I was to have all those people in my life as well.   It's been incredible to realize how those who so impacted Nate's life have also shaped my life through the years: the nurses, the respiratory therapists, child life specialists, and our doctor who became such a vital part of our family.  One of the most amazing things about this blog?  Hearing the stories of Nate and how he impacted the lives of so many people: how his memory continues to live on.  It's been incredible for me to witness another side to the life I thought I knew so well: to hear and look at his life through the eyes of those whole loved him so, and to gain an understanding other than mine as an eleven year old child.

I often find myself playing with the "ifs" of life: wondering what my life would be like if he were still alive, if CF had never entered our world.  Would we be close?  What would holidays look like?  Would he be in love?  Have children? What would our childhood have looked like without CF?  How differently would both our lives have played out?  How different would we be as people?  What if he had been given the same life saving chances that I have been given?  Would that have made any difference? Will my own journey with CF follow his same path?

The Beauty

There is beauty in every life: every breath that has been breathed.  The leaves may soon fall, exhaling their last vibrant breath as winter steals their radiance, but the memory of their colorful Fall beauty will live on, having touched each of us. The magnificence of each color is a reminder of the brilliance of our own life, lives of those we love, and the memory of those we've lost along our journey: each different, but each just as beautiful.  I am thankful for these sun stained days, the vibrant colors of Fall, its finality, the gentle reminder of just how beautiful life is,  and to passionately love every breath.  Love to you all.

Here's to you, Nate. 
Whose beautiful memory still lives on in you?

Irreplaceable

[Blog entry created by Mark Bonnema]

“Lover….”

That is one of our endearing names we use for each other. It usually evokes the tone “I have something to tell you, but please don’t be mad.”

In this case, the something Ashley wanted to tell me was that she had lost her wedding ring. She continued, saying, “I’ve checked each of the twelve places I usually leave it…”  Yes, that’s right… TWELVE places she may leave it throughout out our house. From the old phone cubby, to the soap holder, to the actual jewelry box, to the shelf next to her meds, to the top of the dresser and bedside table … a search of all the usual suspect places came up empty.

“Well, I am sure it will turn up eventually,” I said.

Eventually turned into weeks, and then months. Finally, a thorough search of the entire house was underway… still we could not find her wedding ring.

Luckily we had insurance. A couple calls to the agent and a few more to the kind, wonderful associates at The Diamond Room by Spektor, and Ashley’s ring was being refabricated with improvements. Lost, but not irreplaceable. Sure, the ring is not the original, but you would never know looking at the new one.

Perhaps you realize this, perhaps this is new news, but this is typical of Ashley. This is who she is. Things are prone to being misplaced in her world. This trait is part of what makes Ashley’s character. Its part of what I love and what drives me crazy at the same time. Bless her heart, if she loses the keys one more time….

Here’s the thing. Most objects are replaceable. It may be a nuisance to replace a set of keys or a wedding ring, but things and objects can be replicated and or replaced. Ashley, however, is anything but replaceable. There is no other Ashley, nor will there ever be another living, bravely breathing person with a heart and soul just like hers. She is unique in every way.

I cherish and adore every breath that she takes, realizing that the gifts of breath and life are a fleeting privilege, one all too real for Ashley.  What would I… what would we (including you, the reader) do if we were to lose Ashley? Who and how would that void ever be filled in our lives? We could search the whole world and never find another soul to replace the beautiful, brave soul that she is.

There is no insurance policy that can offer to replace or replicate Ashley. The closest thing we have is YOU.  That’s right. You are Ashley’s best chance at survival, longevity, and a continued chance at living passionately and bravely, bearing her soul for all to see.  When you support the Cystic Fibrosis Foundation, like so many of you have done over the past few weeks and months, you provide funding to support research. The research is getting close! For the first time ever, drugs are being delivered at the genetic level that are allowing persons with CF to live symptom free! CF no longer rules their lives. It no longer robs them of the gifts of breath and life. It no longer threatens to steal our loved ones away. But the new drugs only work for a select few persons with specific genetic defects. More research and development is needed to extend the benefits of these life-saving, disease CURING drugs to all persons with CF.

Understand now? YOU are part of Ashley’s insurance policy… the closest thing we have to keeping her heart and soul here on Earth with us for as long as possible by funding research that can –and we believe WILL save her life.

Ashley will go on losing things. It’s inevitable. We will continue to replace them as the need arises. But we cannot afford to lose Ashley. She is irreplaceable.

Have you paid your insurance premiums? Know where your wedding ring is? More importantly… how have you shown that you cherish that which is irreplaceable in your life?

Strength Among Weakness

Have you ever been so overcome with emotion, so stripped of every ounce of stoic strength, that the mere presence of a memory steals your words and replaces them with continuous, passionate tears?

Not only is it a culmination of memories that brings tears streaming down my face, but the feelings and relationships in which these memories are built upon.  Each defining memory is weaved together by the beauty of the people that helped create them.  For the last few days I have been at a loss for words: easily overcome with tears of gratitude for life's journey and the amazing people that have filled my days thus far.

Beautiful Irony

I have spent the last few days thinking about the irony of life, and how it is built upon the influence and presence of each beautiful relationship that encapsulates it.  How relationships, conversations, and memories have made me everything I am today.  That the last 27 years are made up of moments and relationships that have prepared me for who and what I am at this very moment.  That the future is built upon meaningful relationships, the generosity I have been shown, and passionately believing in a tomorrow that is not defined by what I am not, but what I am. That the root of every past, present, and future breath is rooted in gratitude.  For 27 years I hid something deep within myself: terrified that the world would see my weakness and vulnerability, that I would succumb to my own fears of being different and an outcast.  The ironic thing about life? Sometimes the very thing that you think defines your weakness is really the very thing that defines your strength.

My life is filled with pivotal moments, conversations, and relationships that have forever changed me: leaving echoes of the past etched deep within and defining to who I am.  The beautiful irony of those moments has left me a mess of emotion.

A few months ago a dear friend said something that has left me shaken to the core of all that I ever thought defined me.  It began as a small whisper that I tried so tirelessly to silence, and has grown into something that loudly resounds every time I look in the mirror.   Her words? "We all have known what you are capable of doing and the things you are meant to do, it's just getting you to realize those things and believe it."  Months later, similar words would be generously spoken from people I so greatly respect and admire: incredible people who have believed in me more than I could have ever believed in myself. Those words have permeated every ounce of my being.  Those resounding words and acts of selfless kindness would be at the very heart of my uncontrollable tears. 

Defined by the honesty of who I am.

If you would have told me five years ago, one year ago, or even six months ago that my life would look the way it does at this very moment, I would have never believed it.  Life is beautifully ironic.   The relationships and feelings in which every memory is built upon has led me to this very moment in life and has prepared me for whatever the future may hold.  I am no longer defined by the weakness I have tried my entire life to hide, but am strengthened by the truth of who I am: forever being grateful for every beautiful breath.  

Life is an incredible tapestry woven together by beautiful relationships, the memories that encompass each day, and the grateful tears that strengthen who we are.   Love to you all. 

What beautiful moments define your life?

Being Honest

6 months ago I did something that drastically changed my life.  I logged into Breathe Bravely for the very first time and I began writing.  Never did I imagine a few words would transpire into something so incredible.  Never did I imagine how it would change the people I know and love, and my relationship with them.  Never did I imagine how it would change... me.

A Promise

This blog was started because it was time for me to be honest not only with myself, but with the people who unconditionally supported and fought for me at the arms distance I kept them.  It was to come clean and share this life I had so meticulously kept hidden from the world my entire life. Something I had worked so tirelessly to conceal my entire life was becoming nearly impossible to hide.  It was time I share not only a part of my beautiful life, but ALL of my beautiful life.  

I promised myself this blog would reflect my honest life and the beauty of the good, the bad, and the ugly of Cystic Fibrosis.  I found myself the past few days fighting the feeling of wanting to stuff CF and any signs of it deep within myself, away from the world.  Suddenly, I wanted to pretend it wasn't there.  

Why did I hide a huge portion of my life from the world for so long?  Why does a part of me still?  I couldn't stand the thought of the faces of the people I love when telling them less than perfect news.   I still can't.  Most days I can handle the life I have been given, and can see the beauty in every breath I take. What I can't handle is how my life impacts and hurts those I love so dearly.  But, there is no greater gift than telling those I love good news: that their fighting and support make a difference, that I'm breathing better than I have in 4 years, that I'm running, that the possibility of the future seems limitless.   I can see it on their faces: they have hope.  Most of all, I can see my reflection in their future.  The past two months have been one of the greatest gifts of my life.   

Honesty

On Tuesday after several tries, two hours, both arms used, and my body finally cooperating, I had a PICC line placed to begin a course of IV antibiotics.  I think this time has been the hardest when it has come to sharing the news.  Seeing the look of disappointment in not only myself, but in those I love truly kills me inside.  Maybe it's not their looks of disappointment, but the reflection of my own in their faces.  The last person I wanted to tell was Mark.   I felt terrible.  I felt like for the last two months we had real hope.  Hope for a future that seemed like anything was possible.  A future in which CF wasn't going to have any hold on our life.  But that's not my life, and you know what?  That's ok.  I will be grateful for every day, every memory, every relationship, every opportunity, and every breath I am given.   I am thankful for an aggressive team who wants to keep me the healthiest I have been, who care about me, and fight with me every day.  Even if that means IV antibiotics and hitting things before they turn into something really terrible again, I am so truly grateful.  Some days are rougher than others, but all are good and filled with their own beauty.  The future is filled with wondrous possibility and hope, and it's all mine.  Love to you all.

This is honesty. This is my beautiful life.  This is Cystic Fibrosis. 

Is your life an honest reflection of who you really are?