Chronic disease, a lifetime membership to a world that offers few benefits to justify the exorbitant associated fees. No matter our relentless attempts to achieve our version of normal, the disease still defines us, it controls our waking thoughts, taints our dreams and fills our nightmares with unfair doses of reality.
I stand perplexed. We, as a community repeatedly and symbolically beg for an even stronger connection to this disease through concrete and foundational labeling. It shows our complex need to be defined by the demon which fuels our greatest fears. I am going to ask-why? I am going to challenge this set of words that our community uses so flippantly to describe ourselves and our children.
I have two incredible daughters. Ellesse is stunning, empathetic to no end, giggles uncontrollable and contagiously over the silliest things. Maylie is beautiful, strong and inspiring; she is all these things and more in spite of CF, despite all it's cruel attempts to steal her spirit, she is strong because that is at the core of who she is as a person. She is beautiful because of her smile, her compassion for others who are suffering, worrying about the patient crying down the hallway, while she is in her own living hell. She is strong because she never conceeds, she is relentless in her fight. She is inspiring through her dreams, her quiet demeanor, her desire to share her greatness with the world.
For all those reasons and so many more, she is Maylie and she is my beautiful daughter. She is not and will never be a "CFer." Labeling her by the disease which has stolen so many moments from us, is telling the world that CF is the defining characteristic of who she is. Using that one aspect of her life to categorize her is greatly underestimating the person she is and the power that she has to rise above CF and be who she is meant to be in this world.
We, as parents strive to create an environment of boundless opportunities for our children, especially in light of the restrictions that CF unfairly places on them. I choose to walk away from a name that puts a ceiling on her greatness.
In this same rite, I am not a "CF Mom" I am a mom, my daughter has CF. But, I am still just a mom, partnering with my daughter in her CF care. When did we as a community decide that CF gets to change the most intimate relationships that we have with our children through such an all encompassing name? What purpose does this serve?
I beg you to consider finding a new way to connect, a new way to define yourself and most importantly a new way to define your child. Look at them tonight as you tuck them in for bed. Are they cystic fibrosis? Or are they so much more than that? If so, allow the label to be a part of the evolution of this community, as we work toward creating strong, beautiful and resilient children who also happen to have cystic fibrosis.