Narrating a Dying Child’s Life
Avery is the five-month-old daughter of Laura and Mike Canahuati. She suffers from a rare genetic disorder that will take her life in less than two years. In response to learning, on Good Friday of all days, that little Avery has Type 1 spinal muscular atrophy, her parents began a blog written from Avery’s perspective narrating her experiences, dreams, and desires.
I totally get this. In 2009, also during the days leading up to Easter, our daughter Vivian was diagnosed in the womb with a fatal condition called anencephaly. She was born in late September and lived for a little over 15 hours. It was important to me during those months of pain and uncertainty to tell Vivian’s story, such as it was. It was more than that, actually. It was imperative. I felt a calling, a desire from my depths to speak, to narrate, to give her life a meaning that it could not reach in reality.
Despite having been a literature major in college, I didn’t truly understand the impulse to tell stories until Vivian awakened in me the urge to narrate her life and ours. Only by experiencing the sorrow of losing a beloved child and by putting that tragic experience into words did I come to understand and appreciate what it meant to be a father, what it meant to love without the constraints of time, what it meant to live in the face of death. My heart goes out to Laura, Mike, and Avery; and I pray their stories illuminate their lives and the lives of those who hear them.