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RAISING A RARE GIRL by Heather Lanier


A Memoir

by Heather Lanier

Pub Date: July 7th, 2020
ISBN: 978-0-525-55963-4
Publisher: Penguin Press

A poet and creative nonfiction professor grapples with motherhood and the meaning of life in this memoir of raising her developmentally challenged daughter, Fiona.

As Lanier notes at the beginning, she had followed all the best-practices advice throughout her pregnancy—organic fruits and vegetables, no GMO, maintaining a seated position leaning forward with “my elbows propped on my spread knees like I was forever on the verge of imparting a proverb”—to make certain that hers would be a “SuperBaby.” But Fiona was born with the extremely rare Wolf-Hirschhorn syndrome, which has profound developmental affects relative to mental growth, speech, coordination, and other areas. It has a high youthful mortality rate, and “there is no specific treatment.” The author struggled mightily to cope with the severity of the diagnosis: “I was free-falling….My sadness was no longer the selfish reaction that my baby wasn’t, would not be perfect, but that we could lose her….My cry was an emptying….My cry was a collapse.” Lanier writes with powerful humanity as she charts her course, and one of the first lessons she learned was that when anyone chooses to have a child, they “sign up for the fragility of life.” The author is especially sharp on her journey to remake herself, to pivot away from “the desperate, clinging, distraught version who wanted what her child was not.” Along the way, she forcefully condemns the concept of a hierarchy of lives worth living. Her abiding love for Fiona is clear throughout, and it’s heartening to watch her learn to reject the idea that disability is deficit. “We can only open our arms, say welcome,” she writes, and she is clear that this means being vulnerable, “often fallible, but always open, and raw, and real. And present to the whole messy world.”

A book of pluck, spirit, and great emotion with an appealing perspective on the value of each human life.