Whitewashed

[Blog entry created by Mark Bonnema]

Ashley got her wish! It snowed six inches in Sioux Falls this weekend – light, fluffy, delicate snow – and Ashley was at home to watch each and every flake descend on the world around her! 

I think the allure of “drinking in a bit of fresh air….” that she wrote about in last week’s blog post wore off as soon as she tasted the bitter cold of our current arctic blast. Yuck. None-the-less, there was a palpable contentment and peace about Ashley’s spirit as she watched the snow from our living room…. memories of her recent hospitalization melting away by the fireplace. The boys (Cooper and Kalvin, our dogs) were out of their minds with excitement that Ashley was home, and ensured Ashley did not have to endure even a moment of loneliness as I was away working at the hospital over the weekend.

The first major snow of the impending winter is always a bittersweet affair.  While it is cold, icy, and treacherous, it is also lovely and fresh. The grays and browns of late fall are painted over with a whitewash of delicate snowflakes.  The world takes on a new allure and promise. After a bit of adjustment to the new temperature norms, you can almost see past the cold into the majestic beauty that is winter.

*It was here that I was going to write about Ashley, and how she is not able to undergo a whitewashing of her lungs, to have them renewed and rejuvenated, as cystic fibrosis is a progressive disease that is always adding to its cumulative damaging effects on her lungs. But, Ashley suggested that instead I write about something much more difficult…. me. Me and my experience during the difficult periods when CF is acting up.*

Honesty & Truth

I opted to keep the theme of whitewashing. It betrays perhaps my greatest and most pathological coping mechanism in regards to the effects of cystic fibrosis in our lives. I have a tendency to whitewash difficult situations.  My default is to slap an “everything is ok” response on any and all inquiries from friends and family, and also on my own internal monologue. “She’s doing ok today….”  Or “I’m doing fine… everything is great.” These statements mask the truth. They whitewash situations filled with fear, uncertainty, risk, and powerlessness.

Ashley’s recent hospitalization was a trying one. She had great care from the healthcare team, and the hospital staff is always very kind and gracious to us. But Ashley’s health was at the worst of her lifetime during the hospitalization. Three days after her surgery and bronchoscopy, Ashley spiked a temperature of 102°F. I’ve never been so scared. She had been on antibiotics for the past five weeks… what could be causing a fever so high? Is there a new infection in her lungs? Has the infection spread to her bloodstream? Will her PICC line have to come out? Could she be having a pulmonary embolism? Will she be ok? Will her oxygen saturation stay up? Will she lose the lung function she worked so hard to gain over the past 2 years? Will she be able to come home soon and make our house a home again? Will she be able to keep doing what she loves in practicing, performing, and teaching music? Will she have energy and time for me?  

Rather than dwelling in the uncertainty of these 

fears, I do what I am all to good at- convince myself that “everything is going to be alright.” Whitewash the situation to make myself feel more at ease. Hide the fact that I feel powerless and helpless. Betray my fears of uncertainty.  Don’t let anyone see that this is difficult and trying.

I am not as brave as Ashley. Rarely do I feel the courage and conviction that she displays every day as she faces cystic fibrosis head-on, with honesty and relentless hope. While she faces the difficult and sometimes ugly truth that is CF , I cower behind a whitewashed façade, blindly hoping the troubles and trials will go away.

Yesterday, Ashley’s lung function was 33%, her lowest ever. It is declining rapidly. I am afraid for her. I am afraid for our life. I am afraid for our future.

Sometimes there just isn’t enough paint. Perhaps this is a situation for some cleansing tears. Stay strong,  Ashley. Breathe bravely. I believe in you, I will be here, and I love you.

What are you trying to whitewash?