Question

October 7, 2014   No Comments

What I meant to say when I spoke at Vertex…….

Answer(s)

My mind halts the words that fill my heart. How does one explain the motivation that drives me, in a hope to drive others? Where do you draw the line between truth and self pity, reality and fear that resides in one’s 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 a feeling of pity, but to reveal the truth. I struggle with each fundraising video, each drama invoking Facebook post that is 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 that startle that something is wrong, something is looming, a forgotten hardship in my blissful sleep. Like unsurmountable 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 parts like a cloudy day I am reminded of the noose that slowly constricts my peaceful state. My daughter is a warrior, she is my hero and she is racing against time.

We awake an hour and a half earlier than all the other children in order to clear the viscous demons out of her lungs. We are like a well oiled machine of breathe, blow….. huff, huff, huff. While this time is a reminder of the control of CF, it is time that my little girl and I bond over the disease that often runs our lives. We read stories, we giggle, we are just a mom and a daughter. CF is a part of our lives, truthfully a huge part, but it really only jolts me into reality on a number of occasions. That moment when you can no longer pretend that reality exists, you can no longer block out the images of possibility, that is when I become fragile. The Facebook posts from broken parents who lost their children who were never given the opportunity to have a sweet sixteen party or have a first kiss, some were not even afforded the opportunity to go to middle school, they found their path to heaven all too early. This is a reality that I try to justify with access to care or healthy choices, but I know this is not accurate- this is life with CF, there are no guarantees for a tomorrow. While that is everyone’s slogan, it hurts more when you actually have a daily reminder of that mortality. I have this moment, just being a mom playing tag when I hear a catch in her breath as I race past, or she awakes from a restful sleep coughing, my heart drops, a sign that life is not fair and despite dedication and relentless care, CF mocks us as we have given into the elusion that we have some ounce of control. I walk with heavy feet to the pharmacy to pick up the latest drug to add to the arsenal that we have filled cupboards with, it is the infinite reminder that we are needing more and more to fight everyday and she is only eight.

While these moments are heavy and burdensome I must relay that we still revel in the first snow, seeing buds on trees when spring finally arrives in Montana, hot chocolate still tastes just as amazing and halloween is still the most exciting day of the year. 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 mortality of someone that 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 that you understand what true loss is. Until then fighting is simply an action, not a part of who you are. I am a fighter, I fight for my daughter.

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