Reflections on a Future Without My Medically Fragile Child
One day, this life we live will cease to exist and the future we dread will come to pass.
One day, my arms will be empty. Arms that held you from birth until death. Every cell, every muscle, every tendon will recall the weight of you in my arms.
One day, I will no longer hear the sound of your wheelchair on the creaky hardwood floors nor the beeping of the feeding pump. The silence will be deafening.
One day, there will be no need for night nurses and caregivers and I will wait for the sound of the door to open but it never will.
One day, I will stubbornly have one foot in the land of the living and one foot in the land of the dead.
I will refuse to let you go completely, because to do so might be the end of me.
One day, I will sit in an empty house listening to the sound of my breath and I will marvel that my body carries on even though I feel dead inside.
One day, my beating heart will be the only indication that I am still alive.
One day, I will have to relearn how to be in a world that I left behind so long ago. I will return to it kicking and screaming as the world I have known for so long begins to fade into the past.
One day, I will be forced to relinquish my identity as your mother. I will always be your mother but not in this time and place.
One day I will awkwardly answer the question, “Do you have kids?” by stumbling over my words before blurting out, “Yes, I once had a daughter.”
One day, hopefully many, many, many days from now, I will say a final goodbye to you, my darling Meredith.
One day, I will have no choice but to learn to live again without you.
Chapter 42 from “What I Would Tell You: One Mother’s Adventure with Medical Fragility.” © 2017 Julie Keon
Julie is a mom first and foremost to her 14-year-old daughter, Meredith, who deals with life-limiting cerebral palsy. Professionally, she designs, creates and executes ceremonies that mark life’s transitions and important events as a Certified Life-Cycle Celebrant and Licensed Marriage Officiant. Julie released her first book (What I Would Tell You~ One Mother's Adventure with Medical Fragility) in 2015 and recently released the revised and expanded edition. She shares her life and parenting with her husband, Tim, in the Ottawa valley, Canada.
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