All You Need is Love

[Blog entry written by Mark Bonnema]

“You can’t live on love…” This phrase passed down from generation to generation is often spoken with intent to motivate and spur young couples to make sure they consider life beyond their intensive affectionate stage and ensure they have the financial means to pay their bills and begin life largely self-sufficiently. But what happens when life takes your ability to work, your vocation, and means of livelihood and warps and twists them like lawn ornaments in a tornado? What happens when it seems all you have left is love?

Ashley is a fighter. A brave, fearless, often blindly determined fighter. Tell her she cannot do something and she will work all the harder. Music, schooling, teaching, writing, maintaining extensive friendship networks, she does it all with grace and ease. I am often amazed and even a bit jealous with how easy she makes being successful in life look. The recent exacerbation of Ashley’s lung infection (a chronic part of living with cystic fibrosis) has taken its toll on Ashley’s ability to make music, teach, go to school, and even maintain close friendships beyond text messaging. It's heartbreaking to see the activities she loves so much in life lie just out of her reach. Her health is keeping her tired, worn down, short of breath, and fighting just to heal. There is no time left for her to welcome students into her studio, to practice for her graduate vocal recital, or to sing with her favorite group of singers (the marvelous South Dakota Chorale, of course!).  Beyond breathing and trying to fight infection, sometimes it seems all Ashley has left to live on is… love.

Throughout the years we have dated and been married, Ashley’s health trials have provided difficult experiences that have taught us many invaluable lessons about how to live life. Take nothing for granted. Live fully today, but be prepared for whatever tomorrow may bring. Never give up. And finally, treasure your loved ones, hold them close – the time may arise when you need to lean on them and allow them to hold you close in return. This last lesson is one we have been experiencing daily over the past few months. As Ashley’s health has declined, we have not been able to keep up our lives as usual. School and work have taken backseat to getting Ashley through each new day. Teaching and practicing music have become dreams of treasured life-giving ventures Ashley hopes to return to someday. Cooking, dishes, laundry, decorating for Christmas… again, secondary to making sure Ashley is able to maintain her health. It seems we have been forced into a situation of “living on love.”  

                

Fortunately for us, we are blessed beyond measure. We could never count, add, figure, or determine the amount of support and love we have received from our family and friends. When life was turned upside-down and we found ourselves with an hour’s notice before heading to the hospital in Minneapolis for two weeks, nearly everyone we knew reached out with offers large and small seeking to help in ways we never knew possible, and most of all, ensure we knew we had immeasurable love and support. Blessing is a word with new meaning for us, as is the phrase, “living on love.”  When forced to live on the love, generosity, and kindness of others, the phrase takes on a meaning as beautiful as a glimpse of the sun in the mid bleak winter. Thank you to each and every one of you who have helped to fill this current time of uncertainty, fear, with love, support, laughter, and joy. You are incredible.

  (Ashley singing a few lines for the first time in weeks.)

Look in the mirror – you are incredible. Thanks for your love.

Invisible

Cystic Fibrosis is considered an invisible disease, yet it is anything but.  Meaning, I look perfectly healthy to the unknowing eye, while silently a battle within rages.  CF may be concealed beneath the façade of my body, conveniently hidden from the world around me, but underneath it all it is a relentless disease trying its best to undermine me from within: trying to silently steal every breath.

I've spent a majority of my life keeping any signs of CF concealed from the world around me: hiding my dark eyes and pale skin beneath pounds of makeup, wearing clothes to hide my barreled chest, being conscious of how much I am coughing in public, wearing long sleeves to hide a PICC line, and mindfully deflecting attention from myself in hopes of protecting the ones I love from the realities of CF.   CF may seem invisible to the untrained eye, but it is not.  It's a silent, yet deadly force that affects the lives of so many in my life.

What Lies Beneath

As my CF progresses, it is becoming more and more difficult to conceal.  It may be still invisible to most of the world, but as I look in the mirror, it's anything but invisible. I see CF peering back at me through my own tired, sunken eyes.  I see it in the eyes and faces of the people close to me: a tinderbox of emotion bursting within the silence of their gaze.  I fear that they can see straight into me as our eyes meet. I fear they can see the mess of emotion churning within me, the exhaustion, the relentless war reeking havoc within: that my body is betraying me.  But most of all, I fear they will see how weak I truly am.  

This morning things are as usual: I will go out into the world with makeup carefully painted upon my face to hide the exhaustion that darkens my eyes and paleness of my skin.  The world will see me as healthy, never hovering for a minute on the thought that each breath I am given is such a gift.  CF will be invisible.  

But this afternoon I will walk through the doors of the hospital and be embraced by people I so greatly love and trust with my life.  People who see and know the invisible side of me: my CF Team. People who work so tirelessly to give me another tomorrow, who so endlessly support me every day in every part of my life.  People who help pick up the pieces as I continually try to max out every ounce of life.  My Team never gives up hope.  For each of them, I will always be so truly grateful. 

So, with the guidance of my CF Team, I will be undergoing sinus surgery and a bronchoscopy this afternoon.  I shall be having a bit of an "inpatient retreat" as we monitor my lungs post anesthesia and post surgery. 

My Beautiful Life

It still seems unbelievable to me at times, that my body is literally silently destroying itself from within.  For the most part, my reflection tells me there can't be anything possibly wrong, or if I see any signs of CF, I do my best to simply cover them up.  If it is invisible to the world and to myself it doesn't exist, right? But when I am faced with the images of what lie beneath this façade, the pain, and signs of sheer exhaustion, I am forced to know a different truth.  Invisible or not, I will always have hope that it someday will be completely invisible. 

This morning I will put a smile on my face, be grateful for every moment, every person, and every breath life has granted me.  I am grateful for the life I have been given: the visible and invisible.  Today is just another part of my beautiful journey.  Love to you all. 

What is "invisible" in your life?

Vitality

[Blog entry created by Mark Bonnema]

New crop of flowers

It was a beautiful day here yesterday in Sioux Falls, SD. We took advantage of it by going out and buying some flowers.  If you have ever been to our backyard in the summer, you know that we tend to go a little flower and herb crazy. We fill every square inch of our backyard with pots, buckets, chicken feeders, bushel baskets, old dresser drawers, hollowed out tree trunks, old suitcases, and any other receptacle we can find with a myriad of colorful annual flowers and herbs. Ashley is and always has been the mastermind of our backyard garden creations. I merely have to help transport them to and from the car and take all the pots into storage at the end of the season, otherwise I sit back and enjoy. 

Typically it is a delight to watch Ashley stroll the aisles at the flower shop (at least for the first hour or so…). But yesterday I could tell Ashley was pushing herself to keep going by the end of the day. Ashley was tired, sore, and fatigued. When flower shopping becomes a chore, Ashley’s health is most certainly compromising her vitality.

Waiting

Often by this time of year we are enjoying the first blossoms of our perennial plants and the trees are in full leaf. This year, however, with an abnormally windy and cold spring, the plants are sluggish and behind schedule. We keep wondering if some of our plants have died, or have yet to break dormancy for the year. At a time when our backyard gardenscape should be coming to life, we wait, watching hopefully for our garden to regain its vitality.

We have always taken our vitality for granted. Never in the six years that we have lived in our home have we waited with such longing and anticipation for the first blossoms and flowers of spring to break forth. We also have never had to wonder if Ashley will have the energy and stamina to plant the annuals and herbs at the end of the day when the rest of life’s work is done.

Last Year's Beauty

We do not have to hold out a great deal of hope that the season will turn, the weather will improve, and the full force of spring will descend onto Sioux Falls. The forecast for this upcoming week already looks much improved. We will probably even have to turn on our air conditioner by midweek! We hold out the same kind of hope for Ashley’s health and vitality. She will get through this set back as though it were merely an unseasonable stretch with the promise of “normal” waiting just around the corner.

Seasons

But with every unseasonable stretch of health, our hope is tested. “What if’s” grow larger with every setback. What if this infection does not subside? What if the antibiotics affect Ashley’s nervous system, liver, or kidneys again? What if they don't work? What if her energy and vitality do not return as quickly or to the same extent as before? Unfortunately, Ashley’s health is not as steady or predictable as the seasons. We cannot always assume that things will turn for the better or return to normal like the seasons.

Pergola last year

I hope and pray this current setback is soon nothing more than a memory, like the unseasonably cold spring. The love, support, and kindness of so many wonderful family, friends, and healthcare team members helps more than you will ever know! Thank you all.

Last year

Tomorrow is another day. There are flowers to plant! Make the most of your vitality today, and watch it blossom tomorrow!

Rest & Renewal

Sunday, it's known as being the day set aside for rest, relaxation, and renewal.  But what happens when that rest and renewal are so hard to come by?

The complications associated with Cystic Fibrosis can cause severe insomnia and fatigue, making physical and mental renewal even more difficult.

What contributes to CF related insomnia?

 - Decreased lung function

 - Inflammation in the lungs, airways, sinuses   making breathing difficult, let alone sleeping

- Decreased Blood Oxygen levels

- Side effects of medications

- Cough

- Pain

For someone with CF, the basic tasks of everyday life such as mere breathing take significantly more energy, making restorative rest even more crucial.  Exhaustion and fatigue compromise an already weak immune system and the ability to fight infection.

Hello, my name is Ashley, and I am a CF insomniac, and I would do anything for a night of blissful sleep.  I dread the night, playing host to a struggle of wills between my exhausted mind and body.   By 3 a.m. I am already trying to prepare myself mentally for the next day: knowing the exhaustion just continues to compound with every waking moment.   What do I do when I find myself exhausted and becoming more and more so?  Push even harder.  I am renewed by the magnificent people in my life, the opportunity to live a life with no regrets, and each beautiful breath that passes through my lips.

What renews you?

I am so thankful for every waking moment, and I have a lot of them!  Love to you all!