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! 

The Art of Breathing - Guest Post by Martha Stai

 [Blog post written by Martha Stai]

65 Roses: the phrase brings to mind flashes of color and life. You may imagine a garden full of floral beauty and life-giving splendor. Now picture the full, deep breaths you may take as you inhale that fragrant, floral perfume. For me, the phrase “65 Roses” unleashes images of a merciless weed--one that is overtaking my best friend’s “garden of life.” You see, the phrase “65 Roses” was coined in 1965 when a young boy found it difficult to pronounce the name of his fatal genetic disease, cystic fibrosis. According to the Cystic Fibrosis Foundation, “cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.” Many who suffer from this devastating disease never see the age of 40. My best friend, Ashley Ballou-Bonnema, suffers from cystic fibrosis. Now those roses don’t seem so beautiful, do they?

There are some days when it seems I go through the motions without fully breathing; when I finally allow myself to rest, I inhale full, gratifying breaths and feel my body relax and my thoughts begin to clear. These seemingly unremarkable moments pass me by in a flurry on a day-to-day basis. In those moments, though, rarely do I take the time to give thanks for the ability to take those clear, full breaths. Rarely do I reflect on the ways that my lungs fortify and sustain me. But I should, because my best friend doesn’t have this luxury. Her lungs function at half the rate of a healthy person’s, and yet she continues to fight for her right to a happy, fulfilled life. She is an inspiration to all who meet her; in fact, up until a few years ago, only a few select people in her life knew that she suffered from cystic fibrosis. She had found a way to put on a mask of health and vigor so that the world didn’t have to worry.

All of that changed a few years ago, when Ashley made the brave decision to share her story with the world. She began writing a blog, sharing her daily struggles--the ugly truths and the debilitating effects that the disease had entrusted her with. On the day of her blog reveal, Ashley stoically unveiled the layers of protection and safety that she had built and allowed herself to be fully vulnerable.  She wrote, “Today is the day.  I am removing a layer of paint and showing the world what I AM, not what I am not.  Today I show the world how grateful I am for each breath, each beautiful person I know and love, and each opportunity life has to offer.” Now those are the words of a fighter. Those are the words of someone who wants not only to survive, but to truly LIVE.  

The world was desperate to hear Ashley’s story; in the span of a few years, her blog, Breathe Bravely, has gained hundreds of thousands of followers and has gained recognition from the Huffington Post on dozens of occasions. She has been named one of Augustana University’s “Forward Under 40” for her efforts to make the world a better place. She has also established the nonprofit organization“Breathe Bravely”, which is dedicated to giving voice to cystic fibrosis, and has released her first book chronicling her story. Her testimony of living life to its fullest, despite the demon that tries to stifle her fire, is one that the world needs to hear. Ashley is a wife, daughter, friend, musician, teacher, quilter, and traveler. But most importantly, Ashley is a survivor.

Ashley courageously battles cystic fibrosis every day. Her morning routine involves gulping down a cocktail of prescription drugs. The side effects of each of these pills range from nausea to insomnia. Her sleepless nights are spent anxiously pondering the uncertainty of her future.  The hospital has become her home away from home and her care team is on speed dial.  Ashley’s disease has stolen her innocence and replaced it with apprehension, yet Ashley still strives to find the beauty in every day. So tomorrow, or the next day, when you find yourself out of breath after running a mile or talking excitedly to a friend, remember this: each of those breaths is precious, and my friend Ashley is one of many cystic fibrosis survivors who is fighting for the very next breath. Ashley’s story reminds us all to breathe bravely.

Grownup Christmas List

[Blog post written by Mark Bonnema] 

“Well I’m all grown up now…”  Ok, I know several of my friends and family may take exception to that statement, but at the least, I’ve grown up physically. It would be a bit odd to see someone my size sitting on Santa’s lap.  The line quoted earlier is from the song "My Grownup Christmas List" and goes on to say, “I’m not a child, but my heart still can dream.” As an adult, I somehow find the restraint each year to avoid crawling up onto Santa’s lap, but I certainly resonate with the notion that my heart still can dream.

Generally speaking, our Christmas lists tend to get a bit more abstract and immaterial as we grow older.  Time with family and friends, relief for those who are hurting, happiness, peace, and a host of other positive emotional states are among the things on our grownup list of Christmas wishes.

I am thrilled and overjoyed that within the CF community, many persons and families living with CF have received their Christmas wish this year! Advances in drug therapies and treatments at the genetic level, such as Kalydeco, and Orkambi are allowing some people with CF who have specific genetic mutations to live with a greatly reduced symptom burden. Breathing is easier, the threat of lung infection is decreased, lung function is increased, and life is improved! It may not come with a bow or ribbon, but these developments in treatment certainly have been a wish fulfilled for many people living with CF this Christmas.  

But not everyone is eligible for the new breakthrough drugs because they do not have the specific genetic mutation that the drugs treat. These people living with CF continue to hope and wish for a cure or definitive treatment this Christmas. They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them improvements in quality and quantity of life. Some are even left hoping and wishing that the next breakthrough will come before it is too late.  This is my grownup Christmas wish. I long with all my heart for Ashley and so many others also living with CF to experience symptom free living, to be able to breathe long and free and deep.

Sometimes wishes come true. Sometimes great and beautiful things happen to fulfill our adult Christmas wishes.  More often than not, however, it seems we are forced to recycle the same wishes year after year, as progress ebbs and flows, with fruition lying always just out of reach. Should we give up on wishing? Be "more realistic," or temper our hopes so as to avoid the disappointment of unrealized dreams? Certainly not.

I think that the ability to wish and hope is great gift in and of itself. Wishing keeps us looking forward, it allows our imaginations run wild, chasing an image of a better and more beautiful future. That which we allow ourselves to imagine, we can work together to build and achieve.  

So I’m all grown up now, but I’m certainly not done wishing and dreaming. My wish this Christmas is for a cure for all persons living with cystic fibrosis. Thank you to everyone else out there who shares this wish with me and continues to work so very hard each every day to help this wish come true…  we will keep wishing and working until CF stands for Cure Found!

What are you wishing for this Christmas?     

Give something special and memorable to someone you love. Donate any amount to the nonprofit Breathe Bravely in honor of someone and get a personal message sent to them from Ashley. How?

Step 1. Donate at www.breathebravely.org/donate

Step 2. Send Ashley an email at breathe.bravely@gmail.com with donor and recipient information.