Thursday, May 29, 2014


[Blog entry created by Mark Bonnema]

Another restless night. When will sleep come?
Another coughing spell. When will the inflammation settle down?
Another bought of pain. When will we find a safe and effective pain reliever?
Another infection. When will the PICC line come out?
Another drop in lung function. When will things go in the right direction?
Just another day in the life of Ashley Ballou-Bonnema.

I would give anything for Ashley to have one good night's rest, free from the steroid-induced insomnia and coughing spells that wake her up when she finally does find sleep. I would go to the ends of the earth to find the elixir that brings peace to her lungs and ceases her relentless cough. I would spend every waking moment extracting bacteria cells from her ravaged lungs, if only I could. The disease and its slow, steady advance on Ashley's life often leaves me feeling helpless. I bear witness to the sleepless nights, the coughing, pain, and shortness of breath. But there is very little I can do to alleviate Ashley's suffering.

What can I do? How can I help? I try to offer counsel and encouragement, but I have no idea how much energy and will-power she has exerted just getting out of bed and getting ready for the day. I cannot fully relate or understand what it is like to live with the disease each and every day. I try to soothe and ease the pain by rubbing her back and aching joints, but it is merely a temporary solution to a chronic problem. The pain always returns. I try to help keep her nutrition status up by cooking meals that she enjoys and that are high in calories. Still, her weight falters. What can I do? How can I help?

Over the years I have learned to accept my role as spouse and supporter, as the one who bears witness  to the struggle, but can do very little to lighten the burden. Ashley often apologizes to me, apologizes for 'being a burden,' or for 'holding us back,' or 'for being sick,' as though I blame her and hold her at fault for how CF affects her life. She does not realize that I am the one who feels sorry, helplessly so. Sorry I cannot do more. Sorry I cannot find the answer or the cure. Sorry I cannot make the disease and all its symptoms go away.

If you know Ashley at all, you know that she has little to no time for pity, sorrow, and helplessness. While I am confessing my feelings of helpless in relation to Ashley's relentless battle with CF, Ashley and I intentionally choose to live life with as few regrets as possible. Each and every day is a new day filled with the promises of togetherness, adventure, and challenge. How do I best help, support, and love Ashley as we daily adventure through life? By treating her like she is normal. By refusing to see her as "sick," and by never treating her as though she were incapable or a burden.

Ashley longs for normalcy- to be treated like everyone else. She wants to be seen for the person she is rather than the health condition she bears. She longs for people to relate to her according to her personality, character, abilities, accomplishments, and potential. She hopes people see a beautiful, brave, spirit-filled woman with things to offer this world. She just wants to be "normal."

While our life is anything but normal and we cannot ignore the effects of CF in Ashley's life (doing so would be life threatening!), Ashley does not let CF define her life and I very intentionally follow her lead. I choose to treat Ashley as Ashley for the beautiful person that she is. When we need to deal with the challenges of CF and face it head-on, we do. But in the moments between, we live and cherish life together.

How do I help? What can I do? Even though she is anything but, I treat Ashley as though she is normal.

How wide are the boundaries on your "normal?" Can you stretch them today? What, or who, might you see anew?

1 comment:

  1. Ashley and Mark, how often I have wondered where you are and how are you coming along.

    I have missed your beautiful singing and upbeat attitude.

    My very best wishes to each of you!!

    Jenneil Watkins