[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!
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.*
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?
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?
Thanks for writing honestly, Mark. It's good to know. I think we all wish we could make things different. I know I do. I hope it's helpful for you to have said these things. I'm grateful that you did, and that you haven't just whitewashed things.
ReplyDeleteBeautiful post, Mark - thank you for your honesty and allowing us to see and attempt to understand the realities of your trials. Prayers lifted for you and Ashley's strength and healing.
ReplyDelete