Canandaigua resident Kent Gilges’ firstborn child, Elizabeth Nyanga Gilges, lived for just 10 years, but in that time she managed to touch more people’s lives than most others do in a lifetime.
This is one of the ideas her father explores in A Grace Given, which was published in early 2008. In the 260-page book Gilges recounts many of his thoughts from the decade his daughter lived, as well as the effect her life and death had on him. Writing this book helped Gilges find answers to some of his questions about his daughter’s life, he told the Catholic Courier.
"Thinking through what Elie meant gave me such strengthening of my faith. I guess that’s how I answered the question. There is some reason she’s here, and though I don’t know what it is, it certainly has impacted a lot of lives around her," he said.
The Gilges family moved to Canandaigua and began attending St. Mary Parish in 1998, but Elizabeth, or "Elie" as her family called her, was born in 1993, when Gilges and his wife, Liz, still lived in Michigan. Elie was diagnosed with a brain tumor when she was only eight months old, and a month later suffered a stroke that left her unable to walk, talk or care for herself.
Several years after Elie’s diagnosis, Gilges began keeping a journal, recording everything from Elie’s latest medical updates to his own thoughts about her life and his struggles with faith. He’d never considered publishing these reflections until after Elie’s death in March 2004. His wife, Liz, and a priest friend, Father Robert Connor, read this journal and convinced him other parents could benefit from reading about his experiences.
"Once I started thinking of it as a book, it started to take shape. The whole book in many ways seemed to write itself," Gilges said.
In the months since it’s publication, A Grace Given has resonated with many parents who have lost children, he said. One such couple from Victor whose young daughter passed away spoke to him after a book reading he gave in Canandaigua.
"The husband … said, ‘I haven’t been able to talk about what happened. When people ask me what’s going on in my head, I just hand them your book,’" Gilges recalled.
The story Gilges recounts in A Grace Given is intensely intimate and personal. He shares the emotions he felt when Elie was diagnosed with the brain tumor, when he learned of her stroke and when a doctor told him she was in a persistent vegetative state. The Gilges family found this diagnosis hard to believe, since they felt Elie sometimes responded to her environment in her own small ways.
"I don’t think the term ‘persistent vegetative state’ is appropriate because it implies the individual is something less than human," he said. "Whenever in history humans have tried to classify other humans as something less than human, it leads to bad outcomes."
Gilges and his wife constantly prayed for Elie’s miraculous healing, and the book details their 1994 pilgrimage to Lourdes, France, and their brief meeting with Pope John Paul II in 1997. Although Elie wasn’t healed, in his book Gilges reflects on the fact that she lived nine years longer than doctors first expected. God is like a father who listens to his children’s cries and differentiates between their wants and their needs, Gilges wrote.
"Perhaps we received the miracle which we needed if not the miracle we wanted. Time. We asked for Elie to be healed. That was what we wanted, but God knew that what we really needed was time with her," he wrote.
The book’s narrative structure takes the form of a flower, with a series of chronological reflections forming the backbone — or stem — of the book. Narrative digressions are sprinkled among these reflections, the way flowers shoot off from their stems, Gilges said. One such moving digression is a short chapter Gilges wrote from Elie’s point of view.
"She couldn’t talk. She couldn’t scratch her nose if it itched. I would wonder, ‘What is she thinking?’ Is it possible that even though … externally it seems she is incapable of thought, is it possible she has some kind of rich internal life going on that we know nothing about? It really kept bugging me," Gilges said.
During a visit to his wife’s family in Port Washington, N.Y., one Thanksgiving Gilges headed to a public library to escape the chaos in the family home and wrote this chapter. The chapter ends with Elie talking about the angels that will one day hold her until her parents join her in heaven and about the way being held by God "is a lot like being held by Daddy, except better."
"It took me about an hour or two hours. I wrote it with tears streaming down my face in the Port Washington library," Gilges said.
Elie’s struggle for life taught Gilges and his family about the holiness that comes from suffering and the mysterious ways God works, he explained in the book.
"Why did God give my daughter a brain tumor? … I cannot hope to know. But he did, and it has brought a blessedness into our home and our lives that never would have entered otherwise."