Realizing Hope: A Long Kiss Goodbye - Written by Mark Bonnema (Day 18)

She lay peacefully, her hair draping over the edge of the pillow. Her chest rises gently, easily against the comforter. A wry smile graces the corner of her mouth as her dreams take her to magical places. I approach silently in the darkness so as to not wake her. My hand gently embraces her shoulder as my lips caress her forehead…. Hey now! What kind of blog do you think this is!?!

But, alas, every word is true. Every morning when I rise, Ashley’s night is only a few hours young. She has a few precious hours of sleep to obtain yet, and I would not dream of waking her, as she usually has a big day ahead. I wake up, get ready for my day at the hospital or the farm quietly and in the dark. The dogs rouse, of course, and I let them out and feed them. Then, they are content to go right back to bed and keep Ashley warm until she is ready to greet the day. 

I try to quietly say goodbye to Ashley every morning with a loving whisper and a gentle kiss on the forehead. Sweet you say… but, perhaps, also a little salty? 

My good morning and good bye kiss is filled with love and affection, but through the years, it has also developed into a bit of a quick health assessment. You have a lot of nerve endings in your lips, and the skin on your lips is quite thin (don’t ask how I know this… its medical…). This makes your lips quite sensitive to things like fevers, night sweats, and excess salt. I sometimes can tell if Ashley is not feeling well, or having complications from her CF just from a simple, quick, gentle kiss in the morning.

But now Trikafta. Will this new medication stabilize Ashley’s health to the point that I can simply give a loving good bye in the morning? A kiss filled only with love and affection, free from the twinge of fear that lies deep in my being, the fear that each new day could bring a new fever/infection. A gentle whisper wishing her a good day ahead, free from the worry that a bout with hemoptysis could bring a drastic change to her day and to her health. A brush of my lips intended to merely connect two persons and instill life, love, energy, and affection rather than obtain quick health assessment data. 

I am hopeful. Trikafta is giving many people the space to be hopeful- persons living with CF, like Ashley, but also their families, spouses, friends, and communities. I am hopeful that I can open my heart and my mind to possibly in the place of fear and worry, and to the promise of a future where every morning begins with a simple kiss.