Not Always Happy

by Kari Wagner-Peck

  SPECIAL PRAISE FOR

  Not Always Happy

  “Not Always Happy is the book that, as a parent of a child with Down syndrome, I have always wanted to read. And, it is the book that I want everyone else to read. . . . drawn with humor and without the opportunistic sentimentality so often used in the literary treatment of disability.”

  —CATIA MALAQUIAS, founder and director of Starting With Julius, director of Down Syndrome Australia and the Attitude Foundation

  “Intimate, entertaining, at times hilarious . . . it illustrates that parenting a child with disabilities is really no different than parenting any other child. What is different are the attitudes and obstacles encountered along the way—and that’s the problem we, as a community, still need to solve!”

  —PETER V. BERNS, Chief Executive Officer, The Arc

  “. . . I found myself nodding, laughing, and grumbling audibly—each story feeling frustratingly familiar to me, bringing back memories of my experiences as a disabled person who received a public education. . . . Not Always Happy [is] a gem that’s worth the read.”

  —EMILY LADAU, wordsiwheelby.com, Editor in Chief of the Rooted in Rights Blog, Host of The Accessible Stall

  “With wit, insight, and humor, Wagner-Peck has a written a book for all parents because it gives us the true power of unconditional love.”

  —BOB KEYES, Arts Reporter at the Portland Press Herald/Maine Sunday Telegram

  “I don’t have much in common with Kari’s experience yet I remained glued to her story, gulping it down in two sessions. Your own parenting trajectory need not be the same as hers to understand, sympathize, and thoroughly enjoy hers.”

  —MERIAH NICHOLS, meriahnichols.com

  “Her easy conversational writing will keep you turning pages to see what happens next. . . . books about Down syndrome either have made me want to kill myself with their list of all the terrible things about having a baby with Down syndrome or puke at the blessings of it all. Not Always Happy was something that I could relate to and laugh with, and it helped me see Thorin for who he is, not the extra chromosome he has.”

  —LIN RUBRIGHT, mother of six, advocate and founder of Anna Foundation for Inclusive Education

  “Not Always Happy is a book you’ll be glad to read thanks to Kari Wagner-Peck’s wry humor, unvarnished observations, and memorable anecdotes about her son. . . . Parents of children with disabilities will relate to this mother’s metamorphosis into an advocate.”

  —ELLEN SEIDMAN, lovethatmax.com

  Central Recovery Press (CRP) is committed to publishing exceptional materials addressing addiction treatment, recovery, and behavioral healthcare topics.

  For more information, visit www.centralrecoverypress.com.

  © 2017 by Kari Wagner-Peck

  All rights reserved. Published 2017.

  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 written permission of the publisher.

  Publisher: Central Recovery Press

  3321 N. Buffalo Drive

  Las Vegas, NV 89129

  22 21 20 19 18 171 2 3 4 5

  Library of Congress Cataloging-in-Publication Data

  Names: Wagner-Peck, Kari, author.

  Title: Not always happy: an unusual parenting journey / Kari Wagner-Peck.

  Description: Las Vegas: Central Recovery Press, 2017.

  Identifiers: LCCN 2016059564 (print) | LCCN 2017001779 (ebook) | ISBN 9781942094388 (e-book)

  Subjects: LCSH: Adopted children—United States. | Children with disabilities—Education—United States. | Home schooling—United States. | Parenting—United States. | BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. | FAMILY & RELATIONSHIPS / Children with Special Needs. | FAMILY & RELATIONSHIPS / Adoption & Fostering.

  Classification: LCC HV875.55 .W34 2017 (print) | LCC HV875.55 (ebook) | DDC 362.3/3092 [B] —dc23

  LC record available at https://lccn.loc.gov/2016059564

  Photo of Kari Wagner-Peck by Betsy Carson, All Art Media

  Every attempt has been made to contact copyright holders. If copyright holders have not been properly acknowledged, please contact us. Central Recovery Press will be happy to rectify the omission in future printings of this book.

  Publisher’s Note: This book contains general information about child development, Down syndrome, foster care, adoption, and related matters. The information is not medical advice. This book is not an alternative to medical advice from your doctor or other professional healthcare provider.

  This is a memoir—a work based on fact recorded to the best of the author’s memory. Our books represent the experiences and opinions of their authors only. Every effort has been made to ensure that events, institutions, and statistics presented in our books as facts are accurate and up-to-date. To protect their privacy, the names of some of the people, places, and institutions in this book may have been changed.

  Cover and interior design and layout by Marisa Jackson.

  FOR WARD,

  THORIN,

  AND JADE

  Table of Contents

  FOREWORD

  ACKNOWLEDGMENTS

  CHAPTER ONE

  Hitting the Kid Jackpot

  CHAPTER TWO

  The Longest Labor

  CHAPTER THREE

  A Typical Son

  CHAPTER FOUR

  How I Earned the Privilege of Being Called Mommy

  CHAPTER FIVE

  I Hear You Knocking, but You Can’t Come In

  CHAPTER SIX

  We’ve Crossed Over to the Twilight Zone

  CHAPTER SEVEN

  The Littlest Avenger

  CHAPTER EIGHT

  Funny How Life Happens

  Foreword

  Stories of happy families triumphing over disabilities, intellectual or otherwise, tend to be false. If somebody gave you this book hoping to give you a smile and a tear and a lump in your throat and a tugging sensation in your heart, call them and tell them they shouldn’t have.

  If you bought this book expecting that kind of cheap uplift, go back to the bookstore and look for something with dogs.

  But keep this book anyway. Keep it and read it so you can find out what really happens in a family where one member has Down syndrome. See what they see, learn what they learn, get a handle on a dimension of human existence that journalists and commentators and educators and other experts so often fail to understand. One that they fail to understand because they fail to see, because they refuse to see.

  I don’t really know Kari Wagner-Peck. We have never met in person, and I’m not sure I could pick her out of a lineup; we are not Facebook friends or book-club buddies, though I do keep tabs on her Twitter tweets.

  I follow her because she is a writer who is on to something. She and her husband and their young son are participants in—or better, leaders of—a movement that promises profound changes in our world’s understanding of people with intellectual disabilities. They are grappling with something that has long perplexed me—how to get people to stop misunderstanding and mistreating those with intellectual differences. Not by scolding and shaming them into pity and forced tolerance—though some of the people in this book could use scolding and shaming—but by getting them to see what should be so obvious: our shared humanity.

  Kari and her husband, Ward, adopted their little boy, Thorin, from a social-service agency in Maine. Why and how they did this, and what and who stood in their way, are for you to discover in these pages. But you may—spoiler alert—not come away fully understanding what motivated this couple to create this family. They might have been inspired by a traditional religious sensib
ility, but Kari says she doesn’t have that. Or, by a heroic hunger for parental greatness. I think Kari would say she’s pretty sure she doesn’t have that, either.

  I’m not sure that even Kari can explain it, other than she and her husband love their boy, as intensely and irrevocably as if he had been born to them. And apart from all this love, which they seem to have in truckloads, there is something else they don’t have.

  What they lack is the belief, seemingly universal in middle-class, status-conscious, primed-for-perfection America, that a child born with an intellectual difference—Down syndrome, autism, Fragile X, whatever—represents an unspeakable tragedy. A fate that promises only struggle, heartache, and pain.

  I don’t mean to play down the challenges of bringing a child into a world full of cruelty and ignorance. Or, the dread parents may feel if they believe they are not up to raising, or loving, a child with unexpected needs. But Kari and Ward somehow reacted differently when Thorin came into their lives.

  When they learned that their possible future son had Down syndrome, they . . . shrugged, basically, and got on with the adoption. It was a profoundly countercultural reaction. Somehow they never doubted that Thorin is as human as they are, no matter how many chromosomes his cells contain.

  I don’t want to get carried away with the awesomeness of Kari and Ward. This could be a great parenting guide, if you could read it and tease out what to do and what not to do when rearing a child with Down syndrome, but Kari—hah!—does not sort any of that out for you. This book, like life, has no user’s guide.

  What follows instead is a chronicle of honesty, of mistakes, of love and messiness, of laughter, of pee. It’s a journey of panic and course corrections and sweet, surprising successes. Kari has troubles with homeschooling: “I forgot a lot of people wanted to be home with their children all day. I had never been that person.” Kari is awful with bureaucrats. Some of them are awful to her. Kari cries a lot. She feels, deeply.

  And it’s also a story of a boy. Thorin is slow, but he is smart. He has trouble speaking, but he communicates brilliantly. He is adorable, but he is a pain in the ass. He is, in other words, a human child, no less and no more than your special darling with the bumper sticker for student of the month.

  That portrait of Thorin is what makes this a deeply subversive book. And, an important one. If you want to be inspired by heroism amid tragedy, go feel sorry for some other family.

  Heroism? Tragedy? Screw that. Kari doesn’t want your sympathy. Neither does Thorin. They just want you to read this book.

  —Lawrence Downes

  Acknowledgments

  I want to thank my husband, Ward, whose love made everything else possible, and Thorin who continues to give us the best adventure of our lives and gave me permission to write about him. To my mom, Mary Myhers Wagner, who died before seeing the publication of this book, for being a great Bubba, a generous support, and the biggest fan of my writing; to the memory of my dad, Monk Wagner, who was removed from his mother at three years old and raised by a family who loved him dearly and would have adored Thorin. To my sister, Betty Wagner, who is my touchstone, and my brother-in-law Matt Anson for their generous support of our family. To Jade Beaudoin for allowing me to tell part of her story. To Liz Peck (aka Grammy) for her generous support, and to Stan and Nancy Peck (aka Pop-Pop and Nana) for their generous support.

  To Kelly Fernald, my dear and loving friend, for giving me a place to write, and to she and her wife, Allison Reid, for supporting our mission with their incredible generosity, and to Trish Waldron for being at the ready. Deep and abiding gratitude to my agent, Edite Kroll, who believes in me and is my copartner in this endeavor becoming a reality. To the memory of Elisabeth Wilkins Lombardo for being a good editor and mentor; to Lawrence Downes for championing me; and to David Kutcha for helping me shape my story. To Bess Welden, who amplifies my words and mission. Thanks to Bob Keyes for his longstanding support of my work and mission. For giving my words a home, I thank Ellen Seidman, Meriah Nichols, Louise Kinross, and KJ Dell’Antonia. To Central Recovery Press for believing in my story and for giving Not Always Happy the right home. Gratitude to my editor Janet Ottenweller for her skill and patience, to Valerie Killeen, Patrick Hughes, Eliza Tutellier, and the entire CRP team. Profound thanks and gratitude to everyone who reads my blog. You get me. And, thanks to the Maine Art Commission for its generous support of my work; it has made such a difference.

  CHAPTER ONE

  Hitting the Kid Jackpot

  When my husband and I started dating in 2002, I was forty-two years old and Ward was twenty-nine. Four years later, we married and decided we wanted a child. There was a brief exploration into fertility counseling, but I realized for this to work one of us would have to become pregnant and I didn’t want it to be me. I cancelled our introductory appointment at the clinic—twice—before I got up the nerve to tell Ward the truth. Understandably it took him some months to come to terms with the fact that adoption would be our path to a child.

  Two years later, we stood next to each other in our dining room listening to a voicemail that had been left by Linda, a foster care worker in Maine’s Department of Health and Human Services (DHHS).

  “Hi guys! I met someone today who might be a match for you. He’s been in a foster home for the last year. He’s a beautiful boy who’s two years old and . . . he has Down syndrome. Let me know what you think!”

  She wondered what we thought? We felt we had made it quite clear the biggest disability we were capable of coping with was a child who was left-handed or color-blind.

  I asked Ward, “Did she say Down syndrome?”

  “We better listen to that message again.”

  We listened to the message six times until we were absolutely convinced she said Down syndrome.

  “I don’t know why, but that doesn’t bother me,” said Ward.

  “Me either. Why is that?”

  “For some reason, it’s like I’m relieved. Everyone has something. We just know what his something is.”

  He was right. We had learned that everyone in foster care—and in life—has something that makes him or her more vulnerable. I looked up at my husband. His gaze seemed to follow some unseen course into the future. Neither of us said anything for a couple of minutes.

  “Do you feel calm?” I asked as I broke our shared silence. “Because I feel calm.”

  “I do.”

  The next day, I called Linda and told her we were interested.

  “Great. I won’t know anything for a while but I can tell you his name is Thorin.”

  “Oh, I love that name!”

  “Have you heard it before?” She sounded surprised.

  “Never,” I giggled. Then I asked, “What’s he like?”

  “What’s he like? He’s two.”

  “You can’t give me anything?” I pleaded.

  “Okay, he’s beautiful, seems like a funny kid. He can’t walk yet or talk much but he’s trying very hard to do both.”

  While I was thinking what to ask next, Linda added, “Don’t worry about this, but Thorin hasn’t had his parental rights terminated. Right now, he’s technically in reunification with his family.”

  We said we wouldn’t do that—take a child who wasn’t legally free for adoption—but we’d also said we didn’t want a child with a disability. I started to wonder—were we being bamboozled or was it magical like the Yellow Brick Road?

  “Okay.” I could hear the tentativeness in my voice.

  “Don’t worry. The court date for the termination hearing is in two months. He won’t be placed with you until that happens.”

  I started researching online. “Down syndrome and adoption” brought up mostly Christian websites. Some people who choose to adopt an infant or child with Down syndrome are religiously motivated—that wasn’t us. We were only interested in Thorin who had Down syndrome.

  During my research, I was shocked by a statistic I found: 60 to 90 percent of women who discover they are pr
egnant will abort a fetus that tests positive for Down syndrome. I had no moral judgment of their decision. I did, however, find it interesting we were considering an option most people would reject given the choice.

  Wanting to learn more than what Google provided, I called friends I knew who had connections to parents of a child with Down syndrome. Without exception, the first thing anyone talked about was “grief.” The stories were essentially the same: parents not getting the child they had planned on, the one without Down syndrome. A woman who had a teenage son with Down syndrome was shocked we would consider this type of adoption.

  “I love our son,” she said, “but I wouldn’t seek it out.” She wondered if we, too, would end up grieving about who he could have been.

  I knew of Thorin for only a few weeks, but her comment made me angry. I wanted to say, “How about focusing on who he is?”

  When we shared our news with friends and family, I hoped to receive some excitement. Instead, we found out what people really think about kids with Down syndrome. No one said anything close to “Hey awesome, you found a kid!” It was more like “Why do you want to do that to yourself?”; “That sounds hard”; or even “Don’t do that, please.”

  Every day, I discovered some new tidbit of information from the Internet or a parent about what to expect when you’re expecting your “Down syndrome child.” It all got to me. I started to panic. We were agreeing to Thorin because of a feeling—which now seemed puny against all this information—and I actually started questioning our decision. But instead of telling Ward that, I baited him with all the horrible details, hoping he too might come to his senses. The last straw for Ward was when I told him that I had talked to a woman who said she and her husband needed to change their son’s diapers when he was thirteen years old.

  “So, do you think you could change a thirteen-year-old’s diaper? I mean, really, could you?”

  “If it was just any thirteen-year-old boy, no,” he said, “but if it was our son, I could.”