Tuesday, January 14, 2020

Realizing Hope: Joy, Laughter, & Trikafta - Written by Mark Bonnema (Day 11)


Things have been different around our house. No, it’s not Cooper (our goldendoodle), he still sleeps 23 hours a day and only wakes to be fed. It’s not Kalvin (our cockapoo), he still has the world’s most crooked teeth and demands to sit on your lap at all times. Its not the cold, drafty windows… who knows if we will ever get around to replacing those, after all, it’s fun writing messages and love notes in the frost that gathers on them daily in the winter. It’s not so much me (this is Mark writing, by the way, Ashley’s husband) – I’m still likely to be at work, in the kitchen, or at a local brewery hangout. You may also have noticed I do not use as many adjectives in my writing as Ashley.

The difference around our house is, of course, Ashley. Ashley is different. Ashley has been letting us all follow along with each passing day and each additional dose of Trikafta, chronicling in writing the changes manifesting in her body, thoughts, and emotions. I notice the subtle, wet crackle in her cough signaling the thinning and mobilization of her secretions. I hear her take an extra-long sniff of the aromas coming out of the kitchen as her sense of smell heightens. I also notice how quickly our peanut butter supply is dwindling, as she takes a scoop with each Trikafta dose to promote absorption of the medication.

But what I notice the most, the biggest change around our house since Ashley began taking Trikafta, is the return of Ashley’s laugh. A full bodied, drawn out, whole-hearted laugh that can fill the main level of our house. It’s the laugh I grew to love and craved in high school when we began dating. It’s the laugh she would unleash when she had no cares in the world and was living a life of blissful denial in the face of CF.


I know many of you have heard Ashley laugh. It is an unspeakable and incredible feat of perseverance that, despite all life has put in her way, Ashley has never lost her sense of humor and her ability to laugh. But through the years, CF had slowly eroded some of the vibrancy and fullness of Ashley’s laugh. Perhaps she was afraid it would spur a coughing spell. Perhaps the air just was not there to support a marvelous belly laugh. But since Trikafta, it’s back, and its unbridled! I hear it while she is talking on the phone call to her people (you know who you are). I hear it while she is scrolling through a Facebook feed. I hear it while she teaches lessons to her students.

A laugh can give you a glimpse of the joy radiating from one’s soul. Trikafta has ignited the joy in Ashley’s soul. Ashley is hopeful, filled with life and happiness, and her soul is radiating with laughter. Laughter is contagious, and I feel Ashley’s laughter working on me… coaxing me to dare to dream, to dare to hope for the future – our future, and to fully reconnect with the joy in my soul. Trikafta is not a miracle drug instilling joy into people’s soul, but it has brought hope and joy back into Ashley’s life and into our home. Take time to cherish today and share a joy-filled laugh with someone you love.

1 comment:

  1. Love this!❤️Hope is the best treatment to cure all ails. Thank you for sharing your increasing hope with the world through your writing!

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