Sorry

[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?

Helpless
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.

Normal

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?

All You Can Eat

"Please slide your shoes off and step over here."

No, we are not going through the security checkpoint at the airport.  We are in the doctors office getting ready to step on the scale.  

As I step on the scale I hold my breath, hoping that the number is at least the same as last time if not higher.  I know what you're thinking, "she's crazy." 

While the last comment is debatable, the constant battle to gain weight is endless. Cystic Fibrosis causes thick mucus to block the ducts of the pancreas, preventing digestive enzymes to assist in digestion.  What does this mean? It means my body can't process or absorb nutrients properly, especially fats. 

Pancreatic Enzymes

Number of Enzymes I take in a day.

Thank God for these little pills that work to digest my food: I would be so miserable without them.  Enzymes need to be taken anytime I eat.  

Diet

Because the most basic of daily tasks such as breathing take more energy, and because nutrients are not well absorbed, a high calorie diet is an essential part of life for someone with CF. Or as I like to call it, the "All You Can Eat" diet.   A higher body weight is linked to better lung function, and the ability to fight infection. The signs of a lung infection are decreased appetite and weight loss.


Buffet Anyone?
You're thinking, "that sounds awesome. All you can eat? Sign me up."  Sadly, it's not that simple.  At times the last thing I want to do is eat.  Why? Because having a full stomach makes breathing difficult: it pushes against the lungs limiting the amount of room the lungs have to expand for inhalation. Also, because of the complications with the digestive system and because of chronic coughing, CF causes severe acid reflux.  Affected Breathing? Acid reflux? Digestive complications? Bring it on. I'll take fries with that, please. Wait, make that cheese balls [they're higher in calorie content].


I am constantly aware of how I can simply add a few calories here and there, knowing I have to keep eating to stay as healthy as possible.  In the last year and half I have lost about 15 lbs.  I have gained just a couple pounds back, but it is a constant battle between losing and gaining.  In the world of CF a single pound in either direction can mean a lot.  


Those extra pounds you wish you could rid yourself of when you look in the mirror? Embrace them and be thankful for every one of them. They're beautiful.  Love to you all. 


Treat yourself today.  

Want to order those cheese balls? Do it and eat one for me.