Broken Butterfly

My Daughter's Struggle with Brain Injury

Karin Finell

Narrated by Allie Mars

Available from Audible

Book published by University of Missouri Press

In November of 1970, the Finell family’s lives were changed forever by a family vacation to Acapulco. Seven-year-old Stephanie fell ill soon after their return to the United States, but her mother, Karin, thinking it was an intestinal disorder, kept her home from school for a few days. She was completely unprepared when Stephanie went into violent convulsions on a Friday morning. Following a series of tests at the hospital, doctors concluded she had contracted viral equine encephalitis while in Mexico.

After a string of massive seizures—one leading to cardiac arrest—Stephanie fell into a six-week coma. When she awoke, her world had changed from predictable and comforting to one where the ground was shaking. Due to the swelling of her brain from encephalitis, she suffered serious brain damage. Doctors saw little hope of recovery for Stephanie and encouraged her parents to place her in an institution, but they refused.

In Broken Butterfly, Karin Finell recounts the struggles faced by both her and her daughter, as well as the small victories won over the ensuing years. Little was known about brain injuries during that time, and Karin was forced to improvise, relying on her instincts, to treat Stephanie. Despite the toll on the family—alcoholism, divorce, and estrangement—Karin never gave up hope for Stephanie’s recovery. By chance, Karin heard of the Marianne Frostig Center of Educational Therapy, where Dr. Frostig herself took over the “reprogramming” of Stephanie’s brain. This, in time, led her to regain her speech and some motor skills.

Unfortunately, Stephanie’s intermittent seizures hung like the proverbial “Sword of Damocles” over their lives. And while Stephanie grew into a lovely young woman, her lack of judgment resulting from her injury led her into situations of great danger that required Karin to rescue her. Karin’s love for her daughter guided her to allow Stephanie to fill her life with as many positive experiences as possible. Stephanie learned and matured through travel and exposure to music and plays, acquiring a knowledge she could not learn from books.

Stephanie wished above all to teach other brain injured individuals to never look down on themselves but to live their lives to the fullest. Through Stephanie’s story, her mother has found a way to share that optimism and her lessons with the world.

Karin Finell is the author of Good-Bye to the Mermaids: A Childhood Lost in Hitler’s Berlin.

REVIEWS:

““Lyric as a fine poem, vivid as a painting, Broken Butterfly by Karin Finell is a story of hope and love. It is also a gift to those of us who have a loved one with traumatic brain injury. Brava, Karin!”

—Gayle Lynds, New York Times best-selling author of The Book of Spies

“This could be a heartbreaking story about the loss of a child. Instead it is one of inspiration and hope for any parent whose child struggles with disability or disease. While Finell’s daughter Stephanie lived, she spared no opportunity for her intellectual, emotional and spiritual development. With Stephanie’s death and in time, came this book which captures the fierce love and courage of a mother to make each moment count for something beautiful. Our lives are made richer through Finell’s writing, sharing her daughter whose memory lingers forever in these pages, though like a butterfly passing quickly, flew back to the angels.”

—Perie Longo, California Poet Laureate Emeritaand author of With Nothing behind but Sky: A Journey through Grief

“A tender story, heartbreaking but generous.”

—Ramona Ausobel, author of No One Is Here Except All of Us

“Broken Butterfly is a sad but ultimately uplifting story of a child, severely brain damaged by mosquito-caused encephalitis at age seven, and a dedicated mother who cares for her through the turmoil of their lives. By recounting their lives together, Karin Finell has written, in unflinching poetic language, a pertinent and loving memoir that gives her daughter's life meaning. ”

—Spencer Nadler, author of The Language of Cells: A Doctor and His Patients

“Butterfly Broken is a story of sadness, courage and survival, but far removed from the usual mother-daughter-illness story. There are moments of joy and insight when Karin Finell experiences Kenya through the eyes of her daughter. The roar of a lion at night, being part of an endless land and sky, elephants surrounding the rental car, all help Stephanie grow more than therapies or special schools could. In these exotic locales we meet a young child-woman who is indeed developing into a butterfly.”

—Barnaby Conrad, author of The Second Life of John Wilkes Booth