Raising a Rare Girl: A Memoir

In this moving and insightful memoir, poet Lanier (The Story You Tell Yourself) shares her experiences as the mother of a child born with a rare chromosomal disorder. At the age of 32, Lanier becomes pregnant with her and her Episcopalian-priest-in-training husband’s first baby. She writes candidly of wanting to give birth to a “superbaby,” and during her pregnancy she strives to be healthy in order to produce a perfect child. But the baby, Fiona, is born weighing less than five pounds, and by her three-month checkup still resembles a newborn. She’s soon diagnosed with Wolf-Hirschhorn syndrome, which can lead to intellectual disability and the inability to walk or speak. After the author’s husband gets a post at an Episcopal church and the family moves from Ohio to Vermont, Lanier spends her days working with Fiona and various therapists, seeking to find the best ways to meet Fiona’s needs and help her learn to communicate. Lanier struggles with the attitudes of physicians and others who regard her daughter as “damaged” and beautifully details her own acceptance as well as the development of her special needs child (in time, Fiona walks, speaks with the help of a communication device, and attends public school). This intimate, powerful memoir will resonate with parents, whether of “superbabies” or not. (July)