by josie
LeeAnn Taylor’s family, from left to right: Psalm, 14; Dan’s daughter, Erika 18; Shale, 19; LeeAnn Taylor; Taylor’s husband, Dan; Quinn, 22; Jaede 23, and Faith, 17.
Every time I meet a mother with a disabled child, I am struck by how complicated and demanding her life is compared to mine. But in her new book, The Fragile Face of God: A True Story About Light, Darkness, and the Hope Beyond the Veil (Dunham, 2013), California writer and filmmaker LeeAnn Taylor tells the sometimes harrowing story of her difficult marriage and raising five children, three of whom were born with Fragile X Syndrome — a genetic condition causing severe mental, behavioral and physical problems.
The stress was so great at times that Taylor’s own health was put in serious jeopardy. Yet, the young mother survived by relying on an unusual source of strength that helped her find true happiness and fulfillment.
A few years back Taylor shared that turning point with VIVmag. In her VIV Moment, she described the many traditional events and milestones such as riding a bike or going to the prom her Fragile X children, Quinn, Shale and Faith, would never experience. But in that same moment, Taylor realized how much they did give her, even though they would always be very different from “normal” children. Instead of sinking into self pity, Taylor was lifted by gratitude.
In her new book, available to order on May 12, Mother’s Day, it’s clear that Taylor’s willingness to seek a positive perspective helped her maintain the strength to meet challenges. And she returns again and again to the spirit of her own mother as a source of love and guidance.
Her mother was a happy, reassuring woman and the mother and daughter were very close. When Taylor was 9, her mother died of cancer. Although her father remarried, the newly constituted family was not always harmonious, and Taylor missed her mother’s nonjudgmental love intensely. She grew up, married young and began having her own children right away — and that’s when her real struggles began.
By age 27 she was the mother of four small children, three of whom had Fragile X Syndrome. They made noises instead of speaking, often flailing and attempting to hurt one other. (Taylor describes one moment when a Realtor arrived at the front door of the condo that they hoped to sell just as her son Quinn smeared the bathroom wall with his feces.) Her two sons and daughter with Fragile X required constant attention, causing stress in Taylor’s marriage, and for their oldest daughter, Jaede, who did not have Fragile X.
When finances became tight, Taylor’s husband began traveling for work, leaving the young mother to deal with this difficult situation alone (“I was no one’s priority, not even my own,” she writes). She began losing weight and becoming ill, until finally her church friends and parents stepped in to help. Eventually Taylor found a life-saving network of special-needs families, educators and professionals who gave her the support she needed so desperately. “Although I had been involuntarily — even painfully — drafted into it I counted myself privileged to be numbered among them,” she writes.
When she became pregnant after her husband had a vasectomy, she feared having another disabled child. But her baby daughter Psalm did not have the Fragile X gene.
In this simply written and heartfelt story, Taylor emerges as a sensitive, compassionate woman. Through it all she loved all her children and recognized the many unexpected gifts of disabled children. And allowed her mother’s spirit to guide her toward a healthier direction in life. Eventually Taylor and her husband divorced and she remarried, to a man who embraced her life and his new family.
Taylor’s balanced outlook is remarkable given her trials. And whether or not you share her brand of spirituality, her love of family and the way she constantly sought solutions to her huge problems is moving. “I needed to express everything that was in my heart — all of the feelings that were still lingering after the years of devastating challenge and my emergence into a new life,” she says about why she wrote this book. “In writing my story, I felt that my suffering could be a catalyst to help others who are suffering realize that they are not alone — and that all of us hold the power within us to transcend even the darkest of trials.”
Photo credit: Jordan Huntington
