Generosity

How do you show gratitude? Do you send a card? Flowers? Give a gift? A hug?

Today I am struggling. Struggling to find the words and actions to show how truly grateful I am.  How do you adequately thank someone for literally giving you another breath? For giving you the gift of life?  Not just watching from the sidelines, but actually fighting in the game?  

This morning was the Great Strides Walk in Sioux Falls.  It took all I had this morning not to be a complete emotional hot mess.


Emotion
I still am on the verge of being overcome with emotion. I still feel that lump in my throat and my eyes at a single thought of this

morning start to well with tears.  What amazing people I have in my life, and it all started with a single step several months ago by my dear friends.  I could have never imagined the emotion, the people, the support, and love that has led up to today.  How can I possibly ever thank everyone? How can I show all of you how much you truly mean to me?  I think I will go my entire life searching for the right words and suitable actions to show my gratitude.  Nothing will ever be enough.

The Act of Kindness
Today's walk was truly beautiful. Team Ashley for Sioux Falls raised over $6,OOO. Wow. This leaves me absolutely speechless.  The generosity of people has been overwhelming. All I can offer is thank you and my love to each of you.  Your generosity, love, and, support mean more than you will ever know. The event itself raised over $156,OOO.  That is absolutely amazing.  That could be the cure.  That could be one more beautiful breath. That could be another year with friends and family.  That could mean dreams.  That means hope.

There is so much good happening in this beautiful life. Thank you, from the depths of every brave breath for walking, donating, and showing endless love. All the love I possess to each of you.

How do you show your gratitude?

Seasons of Life

Sometimes when you go out into the world with the intention of looking for a way to help others, you end up finding yourself.

New Time

It's my very favorite time of the year: the peonies are blooming. Just like the peonies blossom in the Spring, unfolding their beauty for all to enjoy, they only last for a short time.  The most wonderful part though? They will bloom again next Spring.   Just like the peonies, my journey must continue to the next season of life. After 2 more postings, my stretch of daily writing with Breathe Bravely will come to an end. Just like the seasons return though, I too, shall return to Breathe Bravely when the winds of life stir within me, needing to be shared.

Words cannot adequately describe this journey of these past two months.  In the beginning I thought I was just educating my friends and family about CF, giving a voice to other people with CF, and divulging a portion of my life I had only allowed a very few close people a glimpse into.  There is no possible way I could have known what this experience would mean and how it would change me.  Has it changed you?

Honesty
 How has it changed me?  I don't feel like I am lying to everyone anymore.  Not that I was ever being "dishonest," but I worked so hard and endlessly to hide CF from everyone.   I think about how exhausting it was, now that I am looking back at it all: 27 years of denial and trying to bury it away from the world.  As CF progressed, the harder I fought to paint myself up and put on a good face for everyone.  To be honest, I did it for myself, too.  Some days require a bit more make-up to fool the world, but I have become pretty darn good at hiding the shortness of breath, exhaustion, fear, and pain stirring within. The best compliment? People being shocked, astounded, or simply saying, "I had absolutely no idea."  I have hidden the truths of CF from a lot of people for a long time: even the closest of people in my life.  I never want the people I love to worry, especially about me.  I don't want them to look at me with heartache in their eyes thinking, "that's so sad" or "how is she really doing?" CF is a part of my and will continue to be more so as the seasons change.  That's my life.  Each wonderful moment made possible because of each beautiful breath.  The breaths will get shorter, the fight will get more intense, but my love, gratitude, and passion for life will only grow.  Just as I am so thankful for the season of Peonies, I too am thankful for this season of honesty.  

More
What else has this blog shown me?  Just how many truly amazing people I have in my life and how much good there is in the world.  My life is beyond beautiful.  I see the beauty of my life reflected in your smile, your hug, your kind words, your laughter, your tears.  I only hope I can pay forward and repay all the love and kindness I have been shown.  Thank you to my friends, family, my CF team: each beautiful breath I take is because of you.  Love to you all.

How has this experience impacted you? Be honest.

"One isn't necessarily born with courage, 

but one is born with potential. 

Without courage, we cannot practice any other virtue with consistency. 

We can't be kind, true, merciful, generous, or HONEST."

-Maya Angelou

Sorry

[Blog entry created by Mark Bonnema]

Another restless night. When will sleep come?
Another coughing spell. When will the inflammation settle down?
Another bought of pain. When will we find a safe and effective pain reliever?
Another infection. When will the PICC line come out?
Another drop in lung function. When will things go in the right direction?
Just another day in the life of Ashley Ballou-Bonnema.

I would give anything for Ashley to have one good night's rest, free from the steroid-induced insomnia and coughing spells that wake her up when she finally does find sleep. I would go to the ends of the earth to find the elixir that brings peace to her lungs and ceases her relentless cough. I would spend every waking moment extracting bacteria cells from her ravaged lungs, if only I could. The disease and its slow, steady advance on Ashley's life often leaves me feeling helpless. I bear witness to the sleepless nights, the coughing, pain, and shortness of breath. But there is very little I can do to alleviate Ashley's suffering.

What can I do? How can I help? I try to offer counsel and encouragement, but I have no idea how much energy and will-power she has exerted just getting out of bed and getting ready for the day. I cannot fully relate or understand what it is like to live with the disease each and every day. I try to soothe and ease the pain by rubbing her back and aching joints, but it is merely a temporary solution to a chronic problem. The pain always returns. I try to help keep her nutrition status up by cooking meals that she enjoys and that are high in calories. Still, her weight falters. What can I do? How can I help?

Helpless
Over the years I have learned to accept my role as spouse and supporter, as the one who bears witness  to the struggle, but can do very little to lighten the burden. Ashley often apologizes to me, apologizes for 'being a burden,' or for 'holding us back,' or 'for being sick,' as though I blame her and hold her at fault for how CF affects her life. She does not realize that I am the one who feels sorry, helplessly so. Sorry I cannot do more. Sorry I cannot find the answer or the cure. Sorry I cannot make the disease and all its symptoms go away.

If you know Ashley at all, you know that she has little to no time for pity, sorrow, and helplessness. While I am confessing my feelings of helpless in relation to Ashley's relentless battle with CF, Ashley and I intentionally choose to live life with as few regrets as possible. Each and every day is a new day filled with the promises of togetherness, adventure, and challenge. How do I best help, support, and love Ashley as we daily adventure through life? By treating her like she is normal. By refusing to see her as "sick," and by never treating her as though she were incapable or a burden.

Normal

Ashley longs for normalcy- to be treated like everyone else. She wants to be seen for the person she is rather than the health condition she bears. She longs for people to relate to her according to her personality, character, abilities, accomplishments, and potential. She hopes people see a beautiful, brave, spirit-filled woman with things to offer this world. She just wants to be "normal."

While our life is anything but normal and we cannot ignore the effects of CF in Ashley's life (doing so would be life threatening!), Ashley does not let CF define her life and I very intentionally follow her lead. I choose to treat Ashley as Ashley for the beautiful person that she is. When we need to deal with the challenges of CF and face it head-on, we do. But in the moments between, we live and cherish life together.

How do I help? What can I do? Even though she is anything but, I treat Ashley as though she is normal.

How wide are the boundaries on your "normal?" Can you stretch them today? What, or who, might you see anew?

Control

Our lives are wound together by complexities we can and cannot control. Think of your life and the influences in which you have had total control over.  Now,  think of those circumstances in which you have absolutely no control.  Those moments that are out of our control can put us to the test, make us lose faith, or cause us to cling even tighter to those aspects of our life we can directly control.

Can
I have spent a number of years striving to feel like I am in total control of my life.  Sometimes I think the more time passes, the more I try and control what's happening in my life: from the simplest parts of my life to the most complex. What simple form of control do I cling to? The color and cut of my hair.  If you have been in my life in the last year and a half you know you can never guarantee what my hair will look like: bleach blonde, dark brunette, purple, short, long, two toned, etc.  What do I have this morning scheduled? An appointment at my favorite salon with one of my favorite people, Janna. When my life feels a bit out of control and that the sands of time are slipping through my hands the tighter I try and grasp, a couple hours making me over makes me feel as if I am recharged.  I guess I feel it's easier to take on life's battles sometimes if there's a "new me" to take on the fight.



Relinquishing Control

What have I tried to endlessly hold control over for the last 27 years? CF and the part it plays in my life. What has become a harsh reality I have had to face? I can't control CF.  I ultimately cannot control what it is doing to my body.  What I can control? How I think about CF and how I let it influence my life.  CF will never fully control my life: I will always call the shots. Does CF make life a bit more difficult at times and will it continue to do so? Yes, but at the start and end to each day I know it is my life to live, CF just happens to be along for the journey.  Maybe I color and change my hair because I think that if I look in the mirror and see someone new, CF won't be there any longer as well.  The real truth is it's always there and always will be a part of my life. It's up to me to make the very best of it all.

Whether or not CF is trying to control my life, the life I live is mine and it is beautiful.  I still own each wonderful breath, each ounce of hope, and each gifted moment that turns into a memory.  Love to you all.

Color your hair purple today.

Unspoken

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do.  So throw off the bowlines.  Sail away from the safe harbor. Catch the trade winds in your sails.  Explore.  Dream.  Discover." - Mark Twain

When you look ahead 2O years what do you see?  What about 1O years from now? 5 years? What dreams live inside of you waiting to be unleashed?

To be completely honest, there's no question I dislike more than when someone asks me about the future and my dreams.  What do I say? If they only really knew the pain and fear the answer held.  If you know me, you know it's so important to me be accountable for what I say and aspire to do.   If I set my mind to it, I will accomplish it.  I do not give up.  

The Truth

Of course I have dreams, ambitions, and the hope of a life filled with no regrets, but CF often reminds me of a future of altered dreams.  A future whose seas are uncertain, riddled with looming storms, and tumultuous waters.  If you know me, you know I rarely take life seriously. I am always making a joke about the serious matters of life: humor coated in sarcasm is my specialty.  Underneath the cynicism?  Fear and uncertainty of the future.  Most recently people ask what I hope to do after I am done with my graduate degree. What dreams I have. What do I think silently to myself?  "I hope to still be breathing."  It seems any thought of the future and dreams begin with that simple thought. What if CF didn't hold me back?  It didn't infiltrate my mind with the worries and fear of the future?  What if when I thought about the future I didn't think about what will happen to the people I love and all the life I will miss? For the most part I can separate myself and hide the worry and fear and just focus on living for today.  I think back to the last year and wonder some days how the heck I survived it: physically, mentally, and emotionally.  Then I think ahead and know I don't have any other choice than to live each moment to its fullest: to set sail with no regrets.  What kind of life do I dream of living?  One that leaves a legacy of goodness, kindness, strength, passion, and love.

Growing Old
It's become hard for Mark and I to talk of the future.  By the future I mean 1O years from now, 5 years from now, even 1 year from now.  Very rarely do we talk about growing old together.  When we do, it's plagued by a deep unspoken pain within our hearts, for we both know the cold truth and reality that lies ahead of us.  You who are close to my life probably have heard me often joke about Mark's life after me.  Call it a coping method?  A way to ease the blow of the future?  I think about Mark's life without me, the future that could have been, the dreams that may never come to fruition.  I think about him waking up in the morning and me not being there, seeing traces of me everywhere he looks, seeing friends and family that won't know what to say.  I worry that he won't be ok.

 We must intentionally live day by day, being grateful for whatever we get, and making the most of each moment.  No one's future is set in stone, so make the most of each breath you are given. 

Regardless if the dreams that live within me need to be altered, or new dreams need to be created, I am grateful for each day, each opportunity, each relationship, and each breath.  Whether it's 2O, 1O, or 5 years, I will look back on my life and know I lived it with no regrets.  Love to you all. 

Don't let there be any regrets today.   Sail boldly out into the open sea. 

The Gift of Life

Today has been set aside specifically to remember and pay tribute to those who have given us the freedom to live such beautiful lives.  We also take this time to remember all the loved ones we have lost over the years: flooding our thoughts with memories of their laughter, smiles, and the impact they have left on our lives.

Who are you thinking about today?  What did you love most about them? What do you miss?  What if a part of that person still lived on: gave new life?  Yes, I am talking about being an organ donor. 

In end stages of lung disease caused by CF the number one option for survival is a double lung transplant. Sure, the general population thinks that a lung transplant will easily cure everything: solve the problem of CF, but it doesn't.  A common question I am asked is, "why don't you just a lung transplant?" The surgery itself is highly risky, and then there is recovery, coupled with the fears of chronic rejection.    But what do you
do when that may be your only hope? What if it was your only option at another  2, 5, or 1O more years with the people you love? It was your only chance at any future? Your only possibility to breathe in more breath?

The Truth in Numbers

5O% of people die waiting on the transplant list due to shortage of available donors.  About 15O people with CF received a lung transplant last year.  8O% of People with CF who get the call for a match and survive the transplant, are still alive after the first year.  5O% are alive after 5 years, and only 1/3 of them are alive at 1O years. A lung transplant does not cure CF.  People with CF require 2 lungs, otherwise one would infect the other. The new lungs will not have CF, but the rest of the body's organs are still ravaged by the disease: kidneys, liver, pancreas, etc.  Also, there is a great risk of developing lung infections because of the immune system being suppressed.  Post transplant 6O + pills a day must be taken for anti-rejection purposes.  The body sees a new set of lungs as a foreign intrusion and tries to rid itself of the unfamiliar and what it thinks are a danger.   These drugs suppress the immune system to hopefully allow the body to take to the new lungs.  Antibiotic-resistant bacteria that infected the old lungs may still be present the sinuses and upper respiratory tract, causing the new lungs to take on the life threatening bacteria again.  Infection and chronic rejection are serious, common, and deadly factors of having a lung transplant.  

When the time comes and CF has progressed to end stage, a person with CF is confronted with whether or not to begin the journey of getting on the transplant list.  The CF team will go through extensive evaluations to make sure someone's body and mind are strong enough to endure the physical and mental demands of a lung transplant. The body has to be strong enough to be able to endure the high risk surgery, and then be strong enough to withstand the shock of recovery: physical and mental. 

My Choice

Years ago I would have told you firmly that I would never even consider a lung transplant being an option: I never thought I would actually need one, or that when when the time presented itself I must have reached "my time."  Denial is a beautiful thing until you're confronted with the hard truth that sometimes is your life.  At this moment my current lungs are stable and "healthy" enough to not have to discuss the option of a transplant.  But that day will come, and I will be confronted with the desperation of wanting so badly to be given more time. What would I do with the promise and hope of 5 more years? 1O years? More?  When that time comes I don't know what will happen or what we [me, Mark, my CF team] will decide, but for now at times the question itself plagues my mind.  With every set back, drop in lung function, PICC line, the future of making that decision becomes more real.  For now, I need to do everything I can to keep these lungs as "healthy" as they possibly can be, for as long as possible.

Hope

There are lots of people that are living long great lives because of a lung transplant: no longer having to breathe bravely for every moment to live.  They are no longer bound to watch the world pass them by, or feel as if time is slipping through their hands.  The honest truth about organ donation is someone else's life must be lost in order for someone else to gain.  We have all experienced loss in our lives, but what if that life we lost could still live on?  What if in that tragic loss there was some good that could be done? What if our grief gave someone else hope?  What if it gave a child its mother? A husband his wife?  A family its daughter? A best friend?  

Today we are celebrating the lives of those we have lost and for those who have given us our freedom.  We all have the power to give freedom.  Freedom from oxygen tanks, hospital beds, life support, and infections.  Please join me and become an organ donor: check the box. We have the power to give life.  

What would you do for extra time with the people you love? To live?

Please take the time to watch this moving documentary chronicling Eva's journey to transplant.  It sheds a whole new light into the physical, mental, and emotional journey of CF.  It can be found on Netflix.  

65_RedRoses

Success

What is your definition of success? Do you measure it the same as you did 1O years ago? 5 years ago? What about 6 months ago?

USD campus

This time of year is filled with graduations from universities, high schools, kindergartens, and the celebrations that culminate such festivities. It's the time of life when the future looks brighter than ever and is brimming with promise.  You're instilled with this great hope of changing the world and making it a better place: you are meant to do great things.  

Restless

When I was younger I always felt this stirring within me, this sense that there was something so much bigger than myself awaiting me in the world.  That I was meant to do something great: to be successful.  Has my definition of success changed in the past years? Yes, and it continues to change.  

Igniting a fire

Augie graduation O9'

The education I received during my undergrad only cultivated and ignited my hunger to learn and experience the world around me.  The relationships I fostered and the way in which I was challenged to think beyond myself are what has made me value every beautiful part of life: the dear people who surround me, the opportunities I am given, and every glorious breath.  I would not trade those years, those memories, or those relationships from my undergrad at Augustana for anything.  Those people and memories are still greatly influential in my life today.  I have taken everything they have instilled in me and continued on my journey to learn and experience life: hoping to do something great for the world around me.  

The stirring within me has never ceased and continues to make me restless.  My hunger for learning and constantly striving to do good has never stopped.  In any and all capacities in my life I want to spread good. Looking back over the past 5 years I have learned so much about life, the world around me, and what really matters: people, relationships, doing good, being kind, and continuing to grow as a person.  I am onto a new chapter of my life that involves working on a masters degree where I have the great opportunity to learn and experience life through so many amazing professors, mentors, students, and colleagues at USD.  I am so truly grateful to each of them for not only challenging me, but also sharing their own experiences.  

First day of grad school

Success

What does success look like to me?  Spreading goodness in everything I do.  Striving to make the lives better of those around me.  To show compassion, empathy, love, and goodness in all I do. Thank you to everyone who has impacted my life so greatly.  Success isn't about accolades, money, or titles.  It's about being happy with yourself, striving to do some good in the world, and being grateful for all that you've been given.  Success is doing small things with great love.  Love to you all.


What is your definition of success?