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© 2011 by Amy Julia Becker
Published by Bethany House Publishers
11400 Hampshire Avenue South
Bloomington, Minnesota 55438
www.bethanyhouse.com
Bethany House Publishers is a division of
Baker Publishing Group, Grand Rapids, Michigan
Ebook edition created 2011
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopying, recording, or otherwise—without the prior written permission of the publisher. The only exception is brief quotations in printed reviews.
ISBN 978-1-4412-3377-6
Library of Congress Cataloging-in-Publication Data is on file at the Library of Congress, Washington, DC.
Scripture quotations are from the HOLY BIBLE, NEW INTERNATIONAL VERSION®. Copyright © 1973, 1978, 1984 Biblica. Used by permission of Zondervan. All rights reserved. www.zondervan.com
Cover design by Greg Jackson, Thinkpen Design, Inc.
Cover photograph by Maria Jose Rivera/Trevillion Images
Author is represented by Foundry Literary & Media
Praise for
A Good and Perfect Gift:
Faith, Expectations, and a Little Girl Named Penny
Becker . . . knows how to grab a reader’s heartstrings and never let go as she writes about her journey as a new mom to Penny, her first child, who has Down syndrome. This beautifully written text explores how Becker and her husband deal with the news of having a child with a disability and the transformation they undergo as time passes. Becker’s work is introspective and theologically inquisitive, leading readers to ask the same questions this mother asks herself as her world tilted off its axis.
—Publishers Weekly
starred review
Amy Julia Becker makes herself vulnerable to enlighten us, not just about Down syndrome, but about the intrinsic gifts of life. This book is a must-read, and not just for families and friends of children with Down syndrome.
—Sara Groves
singer and songwriter
Amy Julia Becker has the courage and grace to tell the truth. Whether you are a parent or not, whether the children in your life are “typical” or not, her story will shake you, change you, and encourage you. In a world obsessed with achievement and perfection, A Good and Perfect Gift opens the door to a much more excellent way.
—Andy Crouch
author, Culture Making
This excellent and moving book about Penny as a wonderful gift should be read not just by parents of people with disabilities but by all of us who should discover the beauty of those who are different.
—Jean Vanier
author, founder L’Arche
It has been said there are places in our hearts we do not even know until the heart is broken. A Good and Perfect Gift is the moving story of how Amy Julia Becker and her husband found their hearts broken through the arrival of their very special child. There is beauty here—in the writing and the story—told with deep feeling and faith but not sentimentality. I recommend this book highly, not only to parents with a special child, but to all who seek to discern what God gives us through some of our most painful times.
—Leighton Ford
author, The Attentive Life
Do not be fooled. This is not a typical book about disabilities, sorrow, and triumph. This is a book about a mother who loves her daughter: “I needed to see her as our little girl, not as a diagnosis, not as an obstacle to overcome.” This is among the best books I have read about the true power of the powerless.
—Christopher de Vinck
author, The Power of the Powerless
It takes faith to turn an unmet expectation into something delightfully exceptional, and Amy Julia Becker learned to do just that when Penny was born. Poignant and powerful, the world needs more stories of inspiration like this one!
—Joni Eareckson Tada
Joni and Friends International Disability Center
A forthright account of a how a mother used her religious faith to come to terms of adjustment, acceptance, and love for having a child with Down syndrome.
—Dr. Carl Pickhardt
psychologist, author, child development expert
Amy Julia’s rare gift with words—descriptive, vulnerable, penetrating—bring to life a message of joyful contentment inspired by her daughter Penny.
—Susan Alexander Yates
author and speaker
Hope is the thing with feathers
That perches in the soul,
And sings the song without the words,
And never stops at all.
—Emily Dickinson
Every good and perfect gift is from above . . .
James 1:17
contents
Cover
Title Page
Copyright Page
Endorsements
Dedication
author’s note
prologue
Part One: this child
Part Two: whoever receives this child, receives me
Part Three: just penny
About the Author
Back Cover
author’s note
The events in this book are true to life, although some details have been compressed. The names of individuals have been changed, with the exception of my immediate family and the Fords. Virginia is based primarily upon one brave friend. One day we were talking about this book, and she said, “I think you need to include the stupid things that people say. And I know I’ve said a lot of them, so I’ll volunteer myself for the job.” Some comments that Virginia makes, however, came from the lips of others, so her character has become a compilation of friends. Also, as I hope the story itself demonstrates, the “stupid” comments always occurred in the context of compassion and love, for which I am quite grateful.
Many thanks, therefore, to “Virginia” and to Mom and Dad, Kate, Brooks, and Elly, for your willingness to allow me to share parts of who you are. Thanks also for the support of friends from The Lawrenceville School, Westerly Road Church, and the Down Syndrome Association of Central New Jersey. Thanks to Matt Novenson, David Dicosimo, and Kevin Hector for offering your expertise on theological matters. Areta, once again I thank you for putting me through creative writing graduate school without needing to pay tuition. To my agent, Chris Park, thanks for hanging in there with me and for your devotion to this project. To my editor, Andy McGuire, and the rest of the team at Bethany—I can’t thank you enough for taking a risk with this book and for all your hard work and encouragement along the way. Thanks to Peter, for your tireless support as I wrote these words—both in journal form many years ago and in manuscript form more recently. And even greater thanks for your willingness to walk this road with me every step of the way.
I’m also grateful for all the other families out there with children with disabilities. Whether because of social stigma or as a result of physical suffering, countless parents and children have endured far greater hardship than we have. Your perseverance and love pioneered a way for us. Thank you.
Finally, thank you, Penny, for opening our eyes to a world of beauty, delight, and hope.
prologue
If only we had waited. If only I were due in the summer. Then I could have finished school. Then Peter would have three months free from teaching. Having this baby in June instead of January, that would make sense.
I jerked the car ou
t of the parking lot and rested one hand on top of my round belly. As I drove past a little white church and a deli and a graveyard, I had a thought—and it was so powerful it was more like hearing than thinking—But if you had waited, then you wouldn’t have had this child.
And all my objections ceased.
You wouldn’t have had this child. . . .
1
I love the intimacy of feeling her kick and wriggle and push inside me. I love lying on my side pressed up against Peter and hearing him laugh whenever she moves and he can feel it on his thigh. I love that we are already loving her together.
From my journal, October 2005
“You didn’t like dolls,” my mother said. “You would put all your puzzles in a row in the playroom and dump their pieces onto the floor, then put them back together one by one.”
She shook her head as she unloaded the dishwasher. Then she turned toward me with a smile. “The only word you said incorrectly was raisins. Those, for some reason, you called ‘sha sha.’ Otherwise, you wouldn’t speak unless you could say the word properly.”
I smiled, a little amused, a little self-conscious. Mom wiped her hands on a dish towel. Her curly brown hair was pulled back with two barrettes. Dressed in a Santa Claus sweater and snowflake earrings, she looked her part—preschool teacher, mother of four, grandmother-to-be.
It was the day after Christmas. I was helping put away the china and silver from dinner the night before, but I soon leaned against the hutch in her kitchen, my hand pressed against my lower back. My belly was a taut globe, an announcement to the world that our child would arrive any day now. Our child. Our daughter. Penny.
Mom stacked the plates and placed them on open shelves filled with holiday cheer in the form of elves, snowflakes, miniature sleighs, and jingle bells. She closed the top of the box that held the silver and tucked it under the counter. “I have a few different options for lunch,” she said.
She poured chili into one pot and carrot-ginger soup into another as I stacked red bowls on the counter and retrieved the everyday silverware. “Anything else?”
She motioned toward the chairs. “I’ve got the rest. You sit down.”
It all felt comfortable, familiar—the paper whites blooming in the window, the smell of another home-cooked meal, the kitchen drawer that needed repair, the skylights, the sight of Mom at work.
The house was filled with reminders of my childhood. The window ledge spanning the length of the dining room held a line of family photos—one from every Christmas since my birth. I could walk through my life, starting as an only child gazing with wonder at a tree full of lights. Then, with my baby sister Kate, wearing a “falalalala” dress that Mom had made of red corduroy with white letters. On down the line, with Brooks and Elly entering the family, and from there through the ruffles and taffeta of middle school to the long blond hair of high school to the black pants and sweater that had become my uniform as a young working woman. Still, through it all, I resembled the little girl Mom had described—the one who liked books more than toys, the one who always acted a little more grown-up than her age.
———
That evening we all gathered in the attic, a makeshift family room that remained unpainted and without heat, home to old dress-up clothes, rows of National Geographic magazines, an L-shaped couch, and a big-screen TV. Brooks and Elly shared a blanket. Kate curled up in a chair with a cup of hot chocolate. Mom and Dad sat side by side, their bodies not quite touching. I leaned against Peter, his hand resting on me, waiting for the sharp kicks and ripples that always came in the evening. It still seemed mysterious—that my body could join with his and form another person. That she would inherit my round cheeks or his dark hair or my grandfather’s chin. That she would be ours, and yet utterly herself all at the same time.
Brooks and Elly had decided we should watch some old home videos, but as they flipped through the choices, my mind lingered on the more immediate past, the preparations for new life among us. I had read a host of baby books and written thank-you notes for the dozens of presents we had already accumulated. We had attended a day-long session at the hospital for expectant parents. I learned techniques to breathe through pain, and a nurse walked us through the birthing process. We peeked inside one of the delivery rooms. I had already written all my final papers for graduate school, just in case she came early. And yet, despite the preparations, despite my body’s insistence that a baby was coming, I couldn’t believe we were going to be parents, I was going to be a mother. I squeezed Peter’s hand when she kicked again.
Brooks and Elly agreed on a series of classics—first Brooks as a three-year-old making up a song for the camera: “Why do I have to live in this canoe?” Then Elly as a four-year-old newscaster reporting on the weather. Then the four of us, that same year, when I was thirteen, producing a video for Mom and Dad’s twentieth wedding anniversary as we mimicked their daily routines. And then, there I was, two years old with bleach-blond hair and big green eyes, singing a college fight song. In the video it was summertime, and my mother was pregnant with Kate. Someone asked me when the new baby was coming. “In Octoder,” I replied, and then corrected myself with a frown and a shake of the head. “In October.”
Even at age two I had to get it exactly right. It had to be perfect.
———
Back at our own apartment a few nights later, I woke up with a stomachache. After two hours curled in a chair reading, I padded down the long hallway from the living room to our bedroom, shaking my head. I had seen my doctor the day before, and I could still hear her words: “You aren’t dilated at all. You haven’t dropped. It will be another week or two at least.”
I reached the bedroom and nudged Peter’s shoulder. “I might be having contractions.”
He rolled toward me and squinted into the light. “Really?”
“It’s probably false labor,” I said, trying to sound calm. I glanced at the clock. Six a.m. “But I want to get the nursery ready. Just in case.”
He looked as if he were holding back a smile as he pushed himself up.
I shrugged, a little embarrassed that all I could think about were the tasks I wanted to accomplish. But then my torso tightened. I clenched my teeth and breathed through my nose. False labor, I told myself again. With the contraction over, I forced a smile. “Ready?”
Peter was a teacher and a housemaster in a boarding school, so we lived in an apartment within a dormitory of thirty high school boys, a century-old building of burgundy brick with copper gutters and a slate roof. The back of the apartment held two bedrooms that once had been the quarters for a cook and a maid. They were odd configurations with slanted walls and uneven ceilings. Penny’s room backed up to ours. It held a double bed, a crib, a chair, and a changing table, but the walls were bare.
That morning I washed all the baby clothes. We hung pictures, mostly keepsakes from our own childhoods. The embroidered alphabet my mother made me as an infant. Peter’s christening announcement. A painting of a teddy bear. Peter bounded from pushing the crib into the corner of the room to hammering another nail into the wall, as though he were playing an intense and thoroughly enjoyable tennis match. I moved more slowly, without his giddy energy. If I allowed myself to feel excited, then I would have to think about what lay ahead, the unknown intensity of labor and delivery. Excitement would soon give way to fear, so I kept my thoughts focused on arranging pictures and starting another load of laundry until, every twenty minutes or so, the pain would arrive, and I’d clutch Peter’s hand or press my palms against the cool plaster of the yellow wall and say to myself, as if it were a mantra, False labor. False labor.
It took about three hours to get the clothes washed and folded and to fill the walls of Penny’s room. “I guess I should call the doctor,” I said, once there was nothing left to do.
Another hour and three contractions later, we arrived at the hospital. Peter had showered and shaved, and I had pulled my hair back into a ponytail and put on a little make
up. Dr. Mayer examined me and said, “I can feel your baby’s head. You’re here to stay.”
I wanted to laugh and cry all at once. My eyes met Peter’s. He leaned over and kissed my belly, then gave me a lingering kiss on the lips. “I’ll run home and pack our bags.”
“And would you call my mom?” I asked as he headed for the door.
I found myself attended to by two nurses at once, my clothes in a heap and a hospital gown over my head and a strap around my middle to monitor the strength of the contractions along with Penny’s heart rate. A prick in the vein on top of my hand and an IV dripping fluid into my bloodstream.
And then, just as abruptly, they were gone. I noticed my surroundings for the first time—a small, windowless rectangle with bare white walls. I vaguely remembered a nurse saying, “We’ll get you your own room as soon as possible,” and I realized another patient lay on the other side of a curtain. She spoke only Spanish, but as nurses came and went, I understood that she was in labor at twenty weeks gestation. She was carrying twins.
Every time a nurse came to her side, I wanted to call out, but the words wouldn’t come. My situation—the rather mundane pain of labor—couldn’t compare to the fear she must have been feeling for the lives of those babies. I lay still, and my contractions marched forward until they arrived every five minutes. I watched the screen that measured their intensity and felt an odd sense of awe as the line shot to the top of the graph and held steady for sixty solid seconds. Pain smothered me. It took me an hour to muster the courage to say, “Excuse me? I’d like an epidural. Please.”
Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny Page 1