Heather Lanier - Raising a Rare Girl: A Memoir
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PENGUIN PRESS
An imprint of Penguin Random House LLC
penguinrandomhouse.com
Copyright 2020 by Heather Lanier
Penguin supports copyright. Copyright fuels creativity, encourages diverse voices, promotes free speech, and creates a vibrant culture. Thank you for buying an authorized edition of this book and for complying with copyright laws by not reproducing, scanning, or distributing any part of it in any form without permission. You are supporting writers and allowing Penguin to continue to publish books for every reader.
Portions of this book appeared in different form in Brain, Child Magazine, Monday Coffee, The Mighty, Salon, The Sun, Vela Magazine, and the authors blog starinhereye.wordpress.com.
Photograph on Raymond Baldwin
L IBRARY OF C ONGRESS C ATALOGING- IN- P UBLICATION D ATA
Names: Lanier, Heather Kirn, author.
Title: Raising a rare girl : a memoir / Heather Lanier.
Description: New York : Penguin Press, 2020. | Includes bibliographical references.
Identifiers: LCCN 2019042870 (print) | LCCN 2019042871 (ebook) | ISBN 9780525559634 (hardcover) | ISBN 9780525559641 (ebook)
Subjects: LCSH: Lanier, Heather KirnFamily. | Lanier, Fiona, 2011 | Mothers of children with disabilitiesUnited StatesBiography. | Wolf-Hirschhorn syndromePatientsUnited StatesBiography. | Genetic disorders in childrenUnited States. | Human chromosome abnormalities. | Mothers and daughtersUnited States.
Classification: LCC RJ520.W65 L36 2020 (print) | LCC RJ520.W65 (ebook) | DDC 618.97/60420092 [B]dc23
LC record available at https://lccn.loc.gov/2019042870
LC ebook record available at https://lccn.loc.gov/2019042871
Some names have been changed to protect the privacy of the individuals involved.
Cover design: Darren Haggar
Cover art: Mizina / iStock / Getty Images Plus
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To J, F, & P
without whom Id be stuck
in a much smaller version of self.
First you should know that they have planets inside just as you do; rivers; acacia trees; windfall apples.
S TEPHEN K UUSISTO
The Souls of Disabled Folks
Your children are not your children.
They are the sons and daughters of Lifes longing for itself.
K AHLIL G IBRAN
The Prophet
When I was pregnant, I tried to make a SuperBaby. I didnt realize I was doing this. I thought Id long ago shed the theory that a body could be made perfect. But looking back, my goal was clear. I swallowed capsules of mercury-free DHA to help grow my SuperBabys brain. I filled my grocery cart with organic fruits and veggies, letting our monthly food bill consume a quarter of our income. Of course, I followed the medical advice standard for women of my generation. I avoided soft cheeses and cold cuts, and I microwaved my smoked turkey slices so they curled into crispy-edged Frisbees. But I went above and beyond. I gave up wheat for reasons I forget. I kept my flip phone at least an arms length away from my belly to avoid damaging my SuperBaby with electromagnetic waves. I tried not to let a kernel of GMO corn touch my estrogen-laden tongue. I spoke to my SuperBaby, welcoming it into my body so it would feel loved and supported. I avoided finding out my SuperBabys sex so I wouldnt project gender roles onto her/him/them. I slept on my left side because Id read it was best for my circulation, which was in turn best for Babys. In the last months, I never once reclined on a sofa because Id heard the position could put a baby posterior, which would dramatically increase my chances of having a C-section, which would rob my baby of certain vaginal bacteria that was beneficial for reasons cited in academic journals I couldnt explain. Instead, I always leaned forward, my elbows propped on my spread knees like I was forever on the verge of imparting a proverb.
And I prepared meticulously for an unmedicated birth. In the final months of pregnancy, I ended each hip-aching day by popping earbuds into my ears, closing my eyes, and listening to Hypnobabies, a natural-birthing program that guided me through self-hypnosis.
My baby will be born healthy and at the perfect time, a womans voice uttered as I descended into a dreamy soup of electronica chords and affirmations.
My body is made to give birth nice and easy.
I look forward to giving birth with happiness.
My baby is developing normally and is healthy and strong.
The words were supposed to lodge in my subconscious, creating the reality I wanted: a pain-free birth and a perfect child. I focus on all going right...
After thirty-six hours of labor, the last five of which can best be described as an apocalypse in my perineum, I pushed my baby out and into the warm waters of a hospital tub. For a second, she dangled before me, legs curled toward her chest. Without my glasses, my child appeared to me as a bean-shaped blur suspended in midair.
My husband, Justin, later told me that this was the point at which the nurses became palpably anxious.
A peanut, said the midwife. Just a wittle peanut. That was about the kindest thing a medical professional would say about my newborns body.
Put Baby right on Mommas chest, the books had told me, because oxytocin would flow and enhance SuperBaby with strong bonding. That was in our birthing plan.
But the midwife ordered my husband: Dad, you need to cut the cord.
We were gonna wait until the cord stops... , Justin said. Cutting a cord prematurely, Id read, could rob SuperBaby of vital nutrients and...
In a voice used to direct people swiftly but without panic toward an emergency exit, she said, No, we need to get Baby on the table now.
My husband took scissors to the cord, and just like that, the stranger whod lived inside me for nine months was detached, then whisked from my fuzzy line of vision. Too spent from the thirty-six-hour feat, I closed my eyes and felt the weight of the nine months lift. Id made it to the other side.
I moved to a bed. Flat on my back, waiting to deliver the placenta, I turned my head to the nurse beside me. Is the baby okay? I asked. Labor thrusts a woman into the psychological stratosphere, and I was coming back down.
But the nurse didnt answer.
A few minutes later, though, the midwife returned with my new family member. Shes fine. Just small.
And there she was, my daughter, this product of wheatgrass and self-hypnosis and free-range eggs, of hope and risk and love and a maddeningly loud biological urge. She lay on my chest, perplexed and limp. Her vernix-covered head was no larger than a grapefruit. My hand cradled its entirety. Her black eyes stared up at me, alert and confused. My husband curled beside me and gazed at her in awe. Someone snapped a photo.
We named her Fiona Soen Ray. Fiona because I liked it. Ray after Justins father. And Soen
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