I listen to the rhythm of her breathing as we lay cozied up together like spoons...our favorite place to be. Quiet. Deep. Steady. Seemingly effortless. Tonight, we get the special treat of a mommy/daughter slumber party. I lay my hand on her chest and pray...something I do daily. Pouring prayer over her body and her spirit...and wholeheartedly, passionately crying out to the Lord for a cure. I know the truth; I know what lies inside her little body…the beast we know as Cystic Fibrosis.
She stirs and I hold my breath and feel my whole body tighten as the rhythm of her breathing changes. I'm tense and silent stricken- preparing to hear the dreaded and labored cough steal my child from slumber. Gently she eases back into a peaceful sleep. We have escaped the beast for this moment. I try to relax but never fully can.
The beast. Cystic Fibrosis. This is why my mind cannot quiet down in the still darkness of the night How could I ever explain the motivation that drives me, in a hope to drive others? Where do I draw the line between brutal truth and self pity, the daily life that is our reality and the gripping fear that resides in my soul. With each breath, I feel an unfair mix of gratefulness swirled with unrivaled guilt. Grateful that I am given the gift of each breath, guilty that my daughter was not. So I will take a moment to look at CF, not to evoke feelings of pity, but to reveal the truth.
This time of year is always filled with added emotion for me. Our daughter Reese’s birthday is in the spring, and 10 days following the blessed day of her birth, was diagnosis day. The beauty and freshness of spring, while anticipated and so appreciated, evoke the memories of those first few months of Reese’s life, which truthfully, were really dark times for my heart. The year Reese was born, the Cystic Fibrosis Foundation’s national fundraising event, the Great Strides walk, followed 6 weeks after her birth. This is the time of year when we, as a CF community, each affected by this beast in some way, link arms and attempt to raise money to buy research for a cure. I’m often overcome watching fundraising videos and reading heart wrenching Facebook and blog posts, each vying for attention and money. However, they are exhaustingly accurate; it is just the accuracy I loathe. So, for this moment, I will be strikingly honest about a day in the life.
I awake each morning with a heaviness, a pit in my stomach feeling that something is wrong, something is looming. Like insurmountable debt or a looming termination, except it is a person, and she is a living breathing part of me that lies peacefully upstairs. As consciousness seeps in and the sleepy fog has lifted, I am reminded of the weight on my chest that slowly crushes my peaceful state...a feeling that never really leaves me. My daughter is a warrior. She is my hero and she is racing against time.
Life with the beast is heavy and burdensome, but there is STILL JOY! I must tell you about the JOY that overwhelms us each day. I must tell you how much happiness it STILL brings us to revel in the first fallen snow, and admire the colorful blossoms on trees when spring finally arrives in South Dakota. She STILL loves gazing at the brightness of the moon on a clear night. Cotton candy at the circus STILL tastes just as amazing and Halloween and the day Wally the Elf arrives are STILL the most exciting days of the year. She is STILL the best big sister to her little brother and she proudly perfects her game of hopscotch. Her eyes STILL sparkle when she looks at her daddy and her wise soul STILL loves learning about things like Mount Rushmore and Dinosaurs. These moments are as sweet as they would have been without CF being a part of our lives, maybe even more so, because we never know when the moments are going to end. Until you face the reality of watching your child struggle to breathe, or losing someone you love more than yourself, you really don’t fear death… truly fear it. It is only once you love with all of your heart and soul that you can fully understand what true loss is. Until then, fighting is simply an action, not a part every fiber of your being. I am a fighter; I fight for my daughter…with everything that I am, in the deepest part of my soul.
Will you fight this beast with us?