As I scan across the room to my four children, like any other parent, I cannot imagine waking up to a day with one of them gone. The task of carrying the family through such a loss and continuing with our daily lives of music lessons, karate, school work seems not just impossible, but surreal. How do you fix breakfast, do the laundry, manage the homework and maintain the evening taxi shuttle when one sibling has died? Every part of my existence that I complain about, these mundane and often irritating aspects of everyday life, seem nihilistic in the absence of one of my children. Every apple cut, every shirt folded, would wash over the ever present gravestone in my mind.
Now: repeat this nightmare times two. The image of burying a second child invokes rage against the Fates, my God, your God and all of humanity. It should not be possible, not permissible. Unfortunately, parents of children with lethal genetic disorders see their children’s lives differently from those of us who find the coughs and colds of childhood as winter annoyances. Reality faces these parents down with cruel certainty. How and why are clear; when is today, maybe tomorrow, maybe not.
While touring Books in the Park, a literary festival in Norfolk last Fall, I casually asked Terry Jones-Brady, “Tell me about your book.” With honesty and frankness, she detailed for me her two daughters’ lives, each ultimately overtaken by cystic fibrosis. I silently wondered how horrifying it must have been for her younger daughter to wake up the morning after her sister’s funeral, knowing what genetics had predetermined for her. Jones-Brady’s memoir, A Mosaic Heart: Reshaping the Shards of a Shattered Life, describes her life coping with this heartbreaking eventuality. Ultimately left alone by her husband’s suicide, Terry Jones-Brady took to her computer to reshape her life. The most unlikely of emotions emerges in conclusion: joy.
In sharing her experiences, Terry Jones-Brady has won the William Brenner Nonfiction Prize at the Hampton Roads Annual Writers’ Conference in 2010, a Silver Prize in the category of Grief/Death and Dying in the 2012 Nautilus Book Awards and Honorable Mention in the 2013 Great Southeast Book Festival. A Mosaic Heart may be purchased locally from Prince Books as well as from regional vendors, Shooting Star Gallery, Page after Page and Amazon. A portion of the proceeds from the sale of this book are donated to the Cystic Fibrosis Foundation.