Originally Published on www.brfcf.org on March 18, 2014
The snow falls swiftly, with purpose. The clouds blanket the town, coldness envelopes the world…or maybe just mine. Words have been uttered that are feared, thoughts are being considered that do not yet belong in our lives. How can one small defect wreak such havoc on a small person? A person so young, so full of life and spirit. There is nothing in my life that can seep into my thoughts except- how do I fix this? The answer that makes me weep, is that I cannot. I cannot cure her. I cannot help my daughter.
There are no promises I can make; no fancy plans I can propose that will make CF any less of a demon than it is. So, I sit here, alone in the dark wondering what my purpose is.
I come to two conclusions. I am here to realize the power of this moment–I am here to be taught by her. My sweet daughter, the girl whom holds the strength that I seem to be lacking, is now my mentor. I am no longer the teacher in this story. Unbeknownst to her, she is teaching me about appreciating the gifts of life, the gift of breath. I am here to make sure that my daughter knows her potential, that she does not give way to any misguided ideas that she has an expiration date already decided for her.
Days ebb and flow through a cyclical pattern of what is known, what is expected and inevitable change. In that change is fear, sadness and overwhelm as CF deems it to be. I go through this pattern of disheartening acceptance, which seems unbelievably unfair at 34. I weep for the unknown, for the future which is potentially not mine to dream. I almost begin to accept the words and then this maternal feeling of power consumes me and I decide to fight this beast with everything I have, because she deserves to be here even more so than I do. And that is when my heart stops, my head remembers that we are already doing everything…there is nothing left to do but have faith in science, medicine and God. Faith that something more powerful than me knows how to move forward in this frightening place that I sometimes allow myself to reside.
Each passing acquaintance begs the same information. With a tilt of the head and a sympathetic look they ask the question that must be asked. Intentions are good- the reminder is not. My daughter is in a fragile state each and everyday. Her health while good today, may not be tomorrow. Most days I hold hope for what her future entails, but on the days when overwhelms seeps into my thoughts I retreat, emotions are too great to respond. The older she gets the more fear that clouds the hope that fights for control. I do not articulate these thoughts for sympathy, in fact, quite the opposite. I know how fragile life is, sometimes a simple meeting or gathering is more than I can muster and I have to be okay with that. I will ask you to be okay with that.
While my thoughts may seem grim right now, it is in effort to be transparent. While CF dictates so much of our lives, we are much more than cystic fibrosis and I do not want her to feel defined by her diagnosis. We are strong and happy in this moment and that is the only moment any of us are guaranteed- so we will live it with hope and faith in the future that is left waiting to be seized.