Go Twins!

[Blog post written by Mark Bonnema]

It’s been a bit of a rough go for our favorite sports team at the Ballou-Bonnema household. The Minnesota Twins recently lost 13 games in a row.

Some of the losses were bad. Real bad, like 15 to 8 against the Toronto Blue Jays, or 10 to 0 against the Kansas City Royals. Some of the losses were SO close, like a 1-0 loss in 10 innings against the Cleveland Indians. And some losses were heart wrenching, like being up 7runs to 5 runs late in the game, only to blow the lead and suffer another loss.

Whichever way they lost, whether in spectacular or heart wrenching form, Ashley and I still tuned in. Radio, tv, mlb.com, you name it, we have the Twins schedule cued up and it’s a staple background sound to be heard in our household. Win, lose, or otherwise, we cannot help but support and love our favorite team. I can’t think of anything they could or could not do to make us stop watching or supporting (but don’t take that as a challenge, you Twins, lets not go for a 14 game losing streak…)

Sometimes watching Ashley live with CF has some similarities with watching the Twins play baseball every day. There are times Ashley is doing great, her health is wonderful, and she has no hesitations or second thoughts about doing anything. Life just flows naturally. Its like when the Twins are playing good ball, winning ball – hitting home runs, advancing the runners, getting their pitches, and painting the corners of the strike zone to the opposing team’s hitters. 

But, as the Twins losing streak reminds us, there are times that life doesn’t flow so easily or naturally when living with CF. When Ashley has a flare up and needs to take antibiotics, her joints often hurt so badly in the morning that she hates to think about getting out of bed; the mucous in her lungs is deep and tenacious, forcing frequent and painful coughs in order to clear it; infection steals her vitality and tenacity making everyday tasks an overwhelming chore.

When the Twins are down, hopefully all they need is to come out of their slump, get their heads in the game, and start making plays. Perhaps a home run or double play is all that is needed to reverse their fortunes. Ashley often has to work much harder to correct the course of her health when she is in a “slump.” It can take weeks, if not many months of extra treatments, IV antibiotics, and avoiding all potential sources of viral or bacterial infection.

Even when the Twins are down, we never stop watching, cheering, and rooting them on. We just can’t help but tune in, because we love them. The same goes for Ashley. She and I both know that we have the most wonderful and supportive, unconditional group of supporters rooting, cheering, and constantly working for the best care and treatments for Ashley. Whether her heath is on the “winning” or “losing” side, you guys are always tuned-in. You are even better than the most avid Twins fans, and for that we thank you.

Good news. The Twins won a game on Thursday night, September 1, 2016. They ended their losing streak when they beat the Chicago White Sox 8 to 5.  

In even better news - it's been a winning season here in the Ballou-Bonnema household! Every day Ashley gets and feels good is a WIN! Thanks to each of you for your steadfast support and for being a part of our team. Most importantly, thank you for our ability to trust and know you will be there tomorrow as well, no matter the score.

Go Twins, go! 

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.

Stormy Skies

A crack of lightning streams across the sky while the strong roar of thunder reverberates through the earth like the deep bass of a pipe organ.   A chorus of voices sing out with each drop of rain that resounds against the window pane.  The sounds and sights of summer have returned.

Perfect Night

This past week has been filled with the most beautiful and gentle of rains.  It has also been filled with some harsh summer storms that seemed relentless and uncompromising, leaving a path of destruction behind.  What also filled this past week? Some of the most beautiful and still evenings I can remember.  The sun was beginning to set and everything seemed to glow of a beautiful pink and gold hue.  For a moment it seemed as if life was standing still, that I was holding it lightly in the palm of my hand.  I could almost hear the shifting of the sky as the stars began to replace the sun bathed sky.   For a moment, everything seemed absolutely right in the world.    

Afternoon Storm

The next morning I awoke to an intense rain only to be followed by beautiful beams of sunlight that poured out over everything.  How very quickly things changed.  One moment the trees were soaking in the warm rays of the sun, and the next, tornado sirens were proclaiming their heed of warning.  In a matter of what seemed like just moments the sky opened up and let out a great fanfare: hail, rain, thunder, lightning.  The chorus grew louder as the drops of rain and hail poured out from the sky with more power.  We watched helplessly from inside as mother nature seemed to quickly devastate the world outside the stucco walls of our home.  

Eventually the clouds lightened and began to break apart, the rain ceased, and the sound of thunder was only a subtle rumble in the distance.  Soon, the radiance of the sun painted everything it could reach.  The evening turned into another one of pure beauty and perfection. 

The Storm & CF

What does any of this have to do with CF?  The raging storms of CF have been quite merciless lately.  It seems the atmosphere is just right for the makings of harsh storm.  My PICC line is still adorning my arm and a new course of treatment is underway.  In just 3 weeks my lung function went from 5O% to 37%, all while on IV and oral antibiotic therapy.  We've changed courses and plans in hopes that something will alter the direction of this storm.  

Hail

Like the weather, the conditions of CF can change so quickly.  In just one day CF can turn the sun kissed skies into an unforgiving storm.  

Renewal

Life comes with many storms and days filled with rain, but each one of them is simply beautiful.  As the warm rains of summer pour out from the sky, the earth is renewed and replenished.  Without those storms, the sun filled days would seem less bright, and we wouldn't appreciate the true beauty in those still and beautiful nights.  We can never be sure when a storm may come, foresee how strong it will be, or how much rain will fall, but we can be certain that the sun will shine again. We can be certain there will be days of endless sunshine and beautiful still nights.  The more rain that falls just means bigger puddles to splash in, and if the stormy days seem to never end, we can always dance in the rain.  

Another Beautiful Evening

This CF storm in my life shall too pass.  The destruction caused by this storm may have lasting effects, but that doesn't mean I won't fight to rebuild what has been lost or destroyed.  There will be days with light rain, days of sunshine, and days with fierce storms, but for each day I am truly grateful.  The beauty of life is impossible without the renewing rains from a storm.  I leave you with these words from a dear friend: "Anyone who says sunshine brings happiness has never danced in the rain." Love to you all.  

What storm are you weathering?

Outrunning CF

For the last six months I have solely been running on adrenaline: pushing my mind and body more and more each day trying to outrun CF.  The busier I stay and the more I try and pack into my day the less room there is for CF.  It may sound crazy, but I have mastered it pretty well.

The minute I slow down or let my guard down, CF seems to come at me with a vengeance.  It sneaks up on me and attacks my body with everything its got. What do I do?  Fight.  I have too much life to live to let CF get in the way. 

After pushing my body beyond its limits for the past 6 months and living on adrenaline, my body crashed on me this week.  Even 2 weeks into IV therapy my body decided to revolt.  Monday night I spent the entire night coughing, feeling I couldn't catch my breath and there was a 25 lb weight sitting on my chest.  My body was chilled and sweating, and I ached all over. When I tried to get out of bed I could hardly walk down the stairs without feeling my knees and ankles were going to give out.  My eyes hurt to even open them and it was difficult to focus on anything.  How could this be happening? How could my body be doing this to me?  It seems the harder I push my body and the longer I try to outrun CF, the greater the debt I seem to have to "pay" to CF when I do slow down for a moment.  It's always waiting in the corner to seek its revenge, waiting for me to let my guard down.

I am pretty strong willed and minded: usually thinking I can "outthink" CF or overcome it with my mind and shear will.  That is until it fights back with everything its got, catching me off guard, and reminding me of its presence in my life.  CF may be present, but it will never be more powerful than my will to live fully and breathe deeply.  I will pay my debt today, but tomorrow is a new day that will be all mine.  I will lace up my running shoes and outrun CF.  There is too much life to live to let CF dictate my life.  Weeks like this make me appreciate the days when I feel like I am in charge of my life, when I feel like I own each beautiful breath.   Love to you all. 

What are you trying to outrun?

The Game of Life

I have done everything I can.  I have followed the rules. I have pushed beyond the limits and expectations.   I have made living life my priority.  I have played the game with CF, and played hard.  But what happens when I feel like CF is cheating?  Not playing fair?

What If?
I find myself at times thinking about the "what ifs" of life.  We all do it to some extent.  My biggest "what if?"  I wonder "what if" I didn't have CF.  What could I be capable of accomplishing in the world?   Where would I go and what could I do?  I wouldn't think twice about the future and all it has to offer.  I wouldn't think about time.  Nothing could stop me from living out all the dreams that fill my head.  I wouldn't worry about being forced to just sit back and watch CF shatter everything I love so dearly.  I wouldn't worry about what move it will make next, how it might cheat me out of the things I love to do, and most of all cheat me out of time with those I love.

Playing the Game
I can handle CF.  I can play its game.  I can stand back up after being knocked down.  I can rethink my strategy and fight even harder.  What I can't handle?  How CF affects the people I love.  How it disappoints and lets everyone down at times, how it makes me weak, how it ruins plans with family and friends, and how at times I feel I have absolutely no control over my own life.

Thinking about the "what ifs" is a dangerous game to play, and it doesn't help me play the game, let alone win against CF.  Thinking about the "what ifs" doesn't change the fact that I have CF: it's not going to make it go away. What do I need to do?  Fight even harder, push beyond the limits and expectations placed upon me, live life with everything I have to give, and be grateful for each beautiful breath.  Today starts a new game and I am determined to win. Thank you to everyone for cheering me on in this game of life.  Love to you all.


What "what ifs" fill your game of life?