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.

Thin Ice

There's a hesitation within my step.  My body tenses as I suddenly become aware of every cell within  my body: from my fingertips down to the soles of my feet.   I take a deep breath and gasp as I feel the pungent crisp air pass between my lips and fill my lungs.  For a moment I hold my breath and close my eyes, fearing not only to take the first step, but the journey across the uncertain ground.

Do I delicately place each step, aware of every movement I make hoping the fragile thin ice below my feet will support me?  Or do I run, seeing how far I can possibly reach before I feel or hear the ground give way?

It's time to take that first step, to set out upon the frozen sheet of icy glass and see if it will hold me.  The ground below me has been unsteady these past months, but each step I've taken has been coupled with an army of people and a barrage of potent antibiotics and medications hoping to stabilize and firm the ground beneath me.  It has been an emotional, frustrating, and exhausting endeavor to come this far, but I am amazed and so very thankful to have weathered the journey: to be able to breathe. 

Prepared to Swim

The last 161 days have consisted of two PICC lines, a sinus surgery and bronchoscopy, two visits inpatient to the hospital,  a multitude of oral medications and IV antibiotics, Influenza A, endless hours of treatments, a few drug reactions, and countless visits to my doctors.  But I have finally reached a point in which I have shown enough stability to stop IV antibiotics. It is time to see what my body will do on its own.  I'd be lying if I said I am not nervous or terrified.  It feels as if I am stepping out onto a sheet of thin ice: wondering how far I can get before the ice starts to abruptly crack beneath me, plunging me into the depths of the icy water.   How little trust I have in this body after it has betrayed me so vehemently these past months.  It is not "if" my body will betray me again, but "when."

But I must do it.  I must take a deep breath, step out onto the ice and have faith that it will hold me.  And if not, I surely can swim.

Without Fear

Wherever my steps are leading and however uncertain my path ahead may be, the journey is still most amazing. Let the brisk air pass between my lips and touch the depths of my lungs,  reminding me that I am alive . Let me not only walk without fear upon the uncertain ground, but skate across the glistening thin ice, always being a witness to the beautiful life I've been given.

Thank you to my wonderful CF team, the depth of my gratitude for each of you is immeasurable.  Thank you to my amazing friends and family who have steadfastly supported, loved, and shown me grace through this entire journey: it means more than you will ever know.  I only hope to share as much goodness as I have so graciously been shown and given.  Love to you all.

Are you walking on thin ice and prepared to swim?

The Birthplace of Joy

[Blog entry created by Jayna Fitzsimmons]

Ashley and I have been friends for a really long time, and we have one of the closest, most enduring friendships I have ever experienced.  We met in high school and became instant best friends—pretty much inseparable, instant sisters.  In case you have doubts, here is a photo from an actual family picture session my family did in 2003. If you can look past the stellar posing, you’ll note the fourth sister.    

 

So foxy.  Take it all in.

I am honored to be guest blogging for AB today, and so I want to take this chance to share a little Friday gratitude for the gift that Ashley’s writing on Breathe Bravely has been to our friendship and how Ashley’s courage in embracing vulnerability has been a gift to all of us.

Ashley and I are both teaching artists.  I teach theatre at Augustana College here in Sioux Falls, and, between USD and her home studio, Ashley teaches music to many students of all ages.  It’s usually not too long into one of our frequent dinner or lunch dates that the “teacher talk” begins.  After a few whisky drinks have been consumed and our husbands have faded into the distance--they’ve become very close J--conversation usually meanders around to our shared passion, and sometimes, the attached frustrations. 

“This student has so much promise,” one of us will say, “but she’s holding back in performance!” 

“The potential is there,” the other will lament, “but he seems afraid to step outside of his comfort zone.”

When our train stops at Commiseration Station, believe me, we swap strategies.

Sorry/not sorry, gentlemen.

In the performing arts, forward progress is tricky in that it can sometimes feel an awful lot like failure.  We have to be vulnerable in order to grow, which can feel scary and unpleasant and like we need to find the nearest tub of ice cream/bottle of wine, stat. It’s gunning for that high note with no guarantee it will be reached, committing to a new audition monologue that might fall flat, or “looking stupid” in front of one’s classmates, peers, or an entire audience.  Ashley and I (and every other teacher on the planet, no doubt) toss around questions like: How do we encourage our students to try new things? To take risks with their work? To embrace the idea of productive failure? To willingly make themselves vulnerable in the face of criticism, rejection, or the threat of anything less than an A+?  How can we best teach this concept when we’re still learning it ourselves—and probably always will be?

In looking for a way to talk to my students about how vulnerability can actually be useful, I came across Brene Brown’s work.  Maybe you’re familiar with Brene Brown, a social worker and author who researches and writes about vulnerability.  If you have a spare twenty minutes, check out her engaging TED talk, “The Power of Vulnerability.”  For now, here’s the highlight reel: Brown says that vulnerability—in addition to being necessary for the human connection we all need to live purposeful lives—is “the birthplace of joy, of creativity, of belonging, of love.”  I don’t know about you, but I think that’s such an empowering message: something we’re taught to see as weakness actually gives us strength and the ability to more fully connect with ourselves and others.  According to Brown, vulnerability comes with allowing ourselves to be seen, deeply seen, for who we are and is possible only when we have the courage to embrace imperfection, express gratitude, and believe that what makes us vulnerable is what makes us beautiful.  Sound familiar?

Hint:

Oh, and in case that last question had you stumped, Brown defines courage as the willingness “to tell the story of who you are with your whole heart.”  Sound like anyone we know? 

Bonus hint:

Ashley and I shared so much growing up together, but despite our sisterly status, we rarely shared in the ups and downs of CF. I knew the basics of what it was and that she had it, but that was about it.  Ashley did an excellent job of hiding anything that might make people think she was imperfect, and even as her best friend, I would have had to adopt detective-level observation skills to see any evidence of CF’s presence. The deftly hidden PICC line on a band trip and concealed pill bottles during sleepovers were overshadowed by all of the awesome times we had together, and I was very familiar with the way Ashley would gracefully sidestep any mention of CF with practiced ease.  I understand her reasons, but it kills me now to think of how hard it must have been for CF to be a secret in Ashley’s life.  What if I had stepped outside of my comfort zone to ask questions or offer support back then? Or even a year ago? What was I afraid of?

Ashley’s blog profoundly changed our entire friendship, so much so that, in my mind, I’ve started to divide our time as friends into “Before Breathe Bravely” and “After Breathe Bravely.”  Though it’s been a shorter time, our friendship “ABB” has been so rich, it feels like years.  Ashley’s willingness to be vulnerable to her entire audience of readers unlocked an entirely new understanding of my dearest friend and brought a new depth of connection to our relationship.  It gave me a vocabulary to ask questions.  It gave me permission to get involved.  It was a key under a welcome mat.  Maybe you feel that way, too.

Two weeks ago, Ashley and I took a break from talking about teaching and raised our whiskey drinks in a toast to her 55% lung function.  A year ago, I might not have even known about that success, and now, because of Ashley’s courage, I get to celebrate it!  Thank you, Ashley!  You show us that opening up to be fully seen by others makes for a purposeful life—and you are living it.  Through every challenge and victory, what a gift it is to truly see my best friend!

What rewards could you reap by stepping outside of your comfort zone?  Try something new today.  Thank someone who has changed your life.  And, this one’s really important: call your best friend.