Judy McFarlane - Writing with Grace: A Journey beyond Down Syndrome

Praise for Writing with Grace

This is a beautiful book about a very human story. In learning to embrace the Real Truth in the other, we learn to embrace our own Real Truth. With simple honesty, Grace and Judy have shared the Real Truth of their journey together. And if we accept it, we are challenged to make that journey our own.

Jean Vanier, author of Becoming Human , founder of LArche

When Judy McFarlane met Grace Chen, she discovered a young writer with the fierce desire for creative expression she felt in herself. What transpired was a gift to both of them. Informative, absorbing, and moving, Writing with Grace is a delight.

Joan Thomas, author of Curiosity

There is as much thinking as feeling in this clear and brilliant bookand thats what make it so exceptional. It is also full of enlightenment at every level. One of the many deep and important questions McFarlane poses is: who is more enlightened, the needy or the needed? This book is the antidote to a culture that promotes success at all costs without ever asking what success is.

Ian Brown, author of The Boy in the Moon: A Fathers Search for his Disabled Son

McFarlanes writing is accomplished, intimate and brimming with insight that inspires us to re-examine our attitudes towards both ourselves and those we deem to be different. The result is an evocative and inspiring book that teaches us important lessons about compassion, inclusivity and ultimately, finding the courage to overcome fear and follow our dreams.

Carol Shaben, author of Into the Abyss

This is a small story, a local story, an intimate story that McFarlane, with her honesty, clarity and intelligence, opens into a narrative that will widen your world, stretch your heart, and spark your curiosity, not just for people you meet with Down syndrome, but for everyone you meet. Writing With Grace makes you want to tear down walls and embrace life.

Claudia Casper, author of The Reconstruction

Copyright 2014 Judy McFarlane

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, without prior permission of the publisher or, in the case of photocopying or other reprographic copying, a licence from Access Copyright, .

Douglas & McIntyre (2013) Ltd.
P.O. Box 219
Madeira Park, BC, Canada V0N 2H0
www.douglas-mcintyre.com

The following publishers and authors have generously given permission to use quotations from the following copyrighted works. From Cinderella-Grace, Vancouver Princess . Copyright 2006 by Grace Chen. Reprinted by permission of the author. From The New York Times , All I Could Think Is, Shes My Baby, Shes a Lovely Girl and What Can I Do to Help Her? July 31, 2011, by Dan Hurley. Reprinted by permission of Dr. Alberto Costa. From Laughing Wild . Copyright 1996 (Revised) by Christopher Durang. Reprinted by permission of the author. From Welcome to Holland . Copyright 1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author. From The Body Silent by Robert Murphy. Copyright 1990, 1987 by Robert Murphy. Used by permission of W.W. Norton and Company, Inc. From night Mother . Copyright 1983 by Marsha Norman. Reprinted by permission of the author. From The Guardian , Downs syndrome cells fixed in first step towards chromosome therapy, July 17, 2013, by Ian Sample. Reprinted by permission of The Guardian . From NPR news report titled Eunice Shrivers Olympic Legacy by Joseph Shapiro. Originally published on NPR.org on April 5, 2007. Reprinted by permission of NPR, any unauthorized duplication strictly prohibited. From Becoming Human by Jean Vanier. Copyright 1998 by Jean Vanier. Reprinted with permission from House of Anansi Press. From Downs: The History of a Disability by David Wright. Copyright 2011 by David Wright. Reprinted by permission of Oxford University Press.

Edited by Maureen Nicholson

Text design by Carleton Wilson

Cover design by Anna Comfort OKeeffe and Carleton Wilson

Cataloguing data available from Library and Archives Canada

978-1-77162-025-3 (paper)

978-1-77162-026-0 (ebook)

We gratefully acknowledge financial support from the Government of Canada through the Canada Book Fund and the Canada Council for the Arts, and from the Province of British Columbia through the BC Arts Council and the Book Publishing Tax Credit.

For

Grace,

Kathleen, my mother,

and Kathleen, my daughter

Once upon a time, there was me.

Grace Chen, Cinderella-Grace, Vancouver Princess

Is it not the life undertaking of all of us to become human? It can be a long and sometimes painful process. It involves a growth to freedom, an opening up of our hearts to others, no longer hiding behind masks or behind the walls of fear or prejudice. It means discovering our common humanity.

Jean Vanier, Becoming Human

Part One

Impossible

The notebook lies unopened on the table in front of us.

You can read it, Grace says.

A square of paper taped to the front cover tells me otherwise: Stay AWAY! Do Not Read!!

Are you sure?

Grace slides the notebook closer to me. Its okay with me.

I open the front cover and turn the pages. Titles jump out: How to Be a Spy. Rules for Working. Lists in neat, childish printing. A paragraph about riding the bus with a friend. A poem about love. Near the end, a number of blank pages. Im about to close the book when my eye catches something on the last page. One sentence. I stare at the words. I cant believe theyre here, in this notebook.

I always dream to be a famous writer.

The call came out of the blue.

My friend Madelyne, head of the Caring Ministry at a local church. Shes about twenty-three or -four and has Down syndrome. Her name is Grace. She does a lot of volunteering here Madelyne paused, as if finding a tactful way to go on. Sheshes told me she really wants to go someplace besides her own backyard. And just a week ago, she said she wanted to write. A book. So I was wonderingwould you talk to her? Just something about writing. Maybe help her get started?

I hesitated. A picture was forming in my heada heavy young woman staring at me with small, dull eyes. Someone who didnt look as though she could read, let alone write. So youre saying she can read?

Grace loves to read. Shes at about a grade five or six level, I think.

I was surprised. Id never met anyone with Down syndrome. But in spite of that, or maybe because of it, the picture in my head was transforming into a dark, grainy film: a blank-eyed Grace staring at me as I tried over and over to make her understand some small point about writing; an agitated Grace abruptly standing up, looming over me, angry

I shuddered, appalled at myself. And puzzled. Where had these images come from? Why did I feel a flat edge of fear pressing deep inside me?

But Madelyne was waiting for my answer. Id known her since our sons, now in their late teens, had been in preschool together. She wouldnt ask something like this lightly.