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.

Sunshine On My Shoulders

Take a moment to step outside and close your eyes. Quiet your mind listen to the world around you.  What do you hear? Feel?  There is nothing I love more than stepping outside this time of year and feeling the warmth of sunshine upon my face.  This morning I hear the chirp of the cardinal and the coo of a morning dove.


I and a large majority of people who call the midwest home are pretty naturally fair skinned, but our complexion becomes even more "lily white" during the winter months when the sun's rays are less powerful and we are shut up in doors.  It seems my skin becomes so pasty white it is almost reflective when it sees the sun for the first time in the Spring.  One of my very favorite things also in the Spring is to sit beneath our pergola or in the swing Mark made out of an old victorian bed frame.  For a brief moment life seems to stop and all is right in the world.


Photosensitivity 
What if after ten minutes of soaking in the sun's warmth your skin begins to burn or you start to break out in hives from the heat?  Your cheeks begin to get hot, the scalp of your part begins to singe, and the tops of your hands and feet begin to redden and get bumpy.  The sun your skin so loves and craves only inflicts a lasting distress.  My skin for the last decade or so has been more and more sensitive to the sun, but in the last year and a half some of the medications that are now part of my daily life to fight CF make my skin extra sensitive to the sunlight and cause it to easily burn.  How do I fight back? I wear high SPF sunscreen, long sleeves, sunglasses, a big floppy hat Mark bought me, and sit in the shade.  Gone are the days of a golden summer sun kissed glow. Pale and pasty are my new tan, or if I am in the sun too long, the shade of a steamed lobster.

I still crave the sun.  I still love closing my eyes and feeling the warmth on my cheeks. I love being still for a few moments, forcing myself to feel and hear the beauty all around me, to let the world seem like it is all mine for just a moment.  Love to you all.

Step outside today and bask in the beauty of the sun's warmth, but don't forget your floppy hat.

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!