The Chicken Who Saved Us Read online

  Advance Praise for

  The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful

  “Emotions are raw and the anxiety is palpable, yet this remarkable story is told with such wit and grace, punctuated by her son, Andrew’s hilariously quirky commentary that it makes it impossible to put down. As a physician, I rarely have the opportunity to see the toll that complex medical challenges take on individuals and on relationships. Kristin provides a beautiful reminder of the strength gathered from unique animal companions and tender mercies offered by human friends and strangers alike.”

  ~ Troy R. Torgerson, MD PhD, Pediatric Immunology/Rheumatology, University of Washington and Seattle Children’s Hospital

  ”A testament to the power of love and the power of family, Adams’ provocative tale of her son’s medical journey is told with grace, humor and most of all, compassion. She captivates and endears us with witty banter between her autistic son and backyard chicken. But her true gift is in her ability to have faith in the unseen, while transforming the medical world into a place where magic occurs.”

  ~ Corbin Lewars, Author of Creating a Life

  “A great lesson that our animals teach: To accept others and ourselves right where we are. Readers will be captivated by this tender and brave story of a young autistic boy whose only friend is a chicken named Frightful. Their achingly honest conversations will invite you into their world where superheroes come alive and miracles happen. It is not always dogs, cats, or horses that can touch and enrich the human soul. A backyard chicken can do it, too.”

  ~ Christi Dudzik, MC, LMHC Owner, Healing Paws Inc., Animal Assisted Therapy

  “If you’ve ever received news that made you question how you’d endure, or spent days pacing the halls of a hospital, you will want to read Kristin Adams’ The Chicken Who Saved Us. Adams’ story shows us that love can triumph over any curve ball life hurls our way.”

  ~ Theo Pauline Nestor, Author of Writing Is My Drink: A Writer’s Story of Finding her Voice (And a Guide to How You Can Too).

  “An honest, raw, and candid look at a family’s resilience in a time when there seemed to be no answers. Adams cleverly brings us inside her world as she enlists the aid of a chicken to help her navigate the medical system on her son’s behalf. This is a beacon of hope for readers who find themselves in some of life’s most difficult situations.”

  ~ Andrea Duffield MBA MA CCC-SLP B.Sc.Ed, President, MOSAIC Rehabilitation, Inc.

  ”I wish every parent could read this book, and not just parents of children with communication and behavioral differences. Having worked with children with autism and other developmental conditions, I often see parents having to come to terms with the fact that the ‘playbook’ of raising a child may be completely different than what they had expected. Letting go of how you thought it would play out can be extremely challenging for a parent, but ultimately accepting and embracing the path, wherever it may lead, can sometimes be the critical step towards that happiness. “

  ~ Gary Stobbe, MD, Clinical Associate Professor, University of Washington Director, Adult Transition Program, Seattle Children’s Autism Center

  “This quietly urgent and utterly human telling of a story about faith, family, and a beloved pet chicken named Frightful, keeps us rooting for Andrew, compelling us to turn the pages to find the ending we all hope for and rejoice at the power that resides in even the most fragile among us. “

  ~ Donna Miscolta, Author Hola and Goodbye: Una familia in stories

  Behler Publications

  The Chicken Who Saved Us – The Remarkable Story of Andrew and Frightful

  A Behler Publications Book

  Copyright © 2017 by Kristin Jarvis Adams

  Cover design by Yvonne Parks - www.pearcreative.ca

  Front cover photography by Heidi King

  All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without the written permission of the publisher, except where permitted by law.

  Some names have been changed to protect their privacy.

  Library of Congress Cataloging-in-Publication Data

  Names: Adams, Kristin Jarvis, author.

  Title: The chicken who saved us : the remarkable story of Andrew and Frightful / by Kristin Jarvis Adams.

  Description: [Burlington, Iowa] : Behler Publications, [2017]

  Identifiers: LCCN 2016041080 (print) | LCCN 2016044156 (ebook) | ISBN 9781941887004 (paperback) | ISBN 9781941887011 (e-book)

  Subjects: LCSH: Autistic children--Washington (State)--Seattle--Biography. | Chickens--Washington (State)--Seattle. | Human-animal relationships--Washington (State)--Seattle. | Trisomy--Patients--United States--Biography. | Chronic pain--United States--Case studies. | Adams, Kristin Jarvis. | Adams, Kristin Jarvis--Family. | Mothers of autistic children--Washington (State)--Seattle--Biography. | Mothers and sons--Washington (State)--Seattle. | BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. | FAMILY & RELATIONSHIPS / Children with Special Needs.

  Classification: LCC RJ506.A9 A3345 2017 (print) | LCC RJ506.A9 (ebook) | DDC 616.85/8820092 [B] --dc23

  LC record available at https://lccn.loc.gov/2016041080

  FIRST PRINTING

  ISBN 13: 978194188-004

  e-book ISBN 9781941887011

  Published by Behler Publications, LLC, USA

  www.behlerpublications.com

  Manufactured in the United States of America

  For my three heroes, Jon, Andrew and Hannah

  An animal’s eyes have the power to speak a great language.

  -Martin Buber

  A Note From The Author

  The biggest challenge while writing this memoir was to choose the right combination of events to bring my story to life. Although it was sometimes difficult to remember the details of each moment in the midst of traumatic situations, what you hold in your hands is the story as I experienced it.

  All conversations quoted here occurred, though sometimes have been combined or moved in time. And yes, I witnessed a chicken ‘speak’ to my son and did my best to translate her words.

  For reasons of privacy and respect, the names and details of a few minor characters have been changed. Medical information shared in the book is correct to the best of my knowledge and understanding. And finally, I have done my best to show my deep respect for each character in the book, especially my son and daughter who, in my opinion, are the real heroes of the story.

  ~ Kristin Jarvis Adams

  Table of Contents

  Foreword

  Prologue

  1. Chapter 1

  2. Chapter 2

  3. Chapter 3

  4. Chapter 4

  5. Chapter 5

  6. Chapter 6

  7. Chapter 7

  8. Chapter 8

  9. Chapter 9

  10. Chapter 10

  11. Chapter 11

  12. Chapter 12

  13. Chapter 13

  14. Chapter 14

  15. Chapter 15

  16. Chapter 16

  17. Chapter 17

  18. Chapter 18

  19. Chapter 19

  20. Chapter 20

  21. Chapter 21

  22. Chapter 22

  23. Chapter 23

  24. Chapter 24

  25. Chapter 25

  26. Chapter 26

  27. Chapter 27

  28. Chapter 28

  29. Chapter 29

  30. Chapter 30

  31. Chapter 31

  32. Chapter 32

  33. Chapter 33

  Epilogue

  Survival Guide


  Acknowledgments

  Foreword

  There is so much to ponder in this beautiful story of human challenge and triumph, so much that is real, honest, and moving. It should be on the bookshelf of every physician that cares for children with serious health problems and every parent facing the unknowns of raising a child with such issues.

  The Chicken Who Saved Us is the remarkable story of a family struggling through the challenges of life threatening and chronic illness with wonderful strength, humor, compassion and honesty. In these pages, you will meet Andrew, a young man with autism and a rare genetic disorder so mysterious that other similar cases haven’t been reported. You will meet his best friend Frightful, and fall in love with his sister Hannah, who saves his life by donating her own bone marrow.

  This amazing story of faith—the kind of faith full of human doubt, fear, and hope—helps us all navigate through the terrors of dealing with serious illness. It is the story of a woman who shares her innermost thoughts, dreams, fantasies, frustrations, and failings in such an honest and real way that I was moved to tears, or was left shouting out loud with laughter.

  I have been a pediatrician for forty-eight years and thought I understood it all. I’ve sat in conferences giving terrible news to shocked and exhausted families. I’ve seen moms and dads cry as I gave them news that their child had autism, or was brain injured at birth, or had a rare genetic disease that we knew little about and had no treatment. I thought I could empathize. I thought I could imagine how they felt, how they might cope, how they would find the strength to endure. But until reading about this incredible family and the amazing people who walked alongside them, I don’t think I truly understood what their lives were really like.

  I think about Kristin’s description of the mothers in neighboring rooms with their hair askew, in rumpled sweats and no makeup, with lost and exhausted looks on their faces—a scene I’ve witnessed numerous times, but never really saw. I think about watching a family leave the ICU after the passing of their child, not fully seeing how it impacted all the other nearby families. I think about the touching scene of the priest from Hannah’s school blessing the IV bag full of her bone marrow before it was infused into Andrew’s frail body before blessing the stuffed chicken that was Andrew’s stand-in for his best friend, a chicken named Frightful.

  Thank you, Kristin Jarvis Adams, for sharing your heart with us, your readers. I, for one, have gained so much from being on this journey with you.

  Charles Cowan, MD

  Emeritus Clinical Professor, Department of Pediatrics

  UW School of Medicine

  Emeritus Medical Director

  Seattle Children’s Autism Center

  Prologue

  Sue walked into a scene right out of a nightmare. Vomit covered the walls, soaked the bed, and was dripping onto the floor as fast as the IV pump could push formula through the feeding tube. I was shouting, Andrew was gagging, and the dogs were fighting in the hallway.

  “Please stay down, Andrew!” I begged, pushing my sixteen-year-old son back onto the bed. Having thrown up with such force, the bottom end of the feeding tube had come out of his stomach and now hung from his mouth. The other end was still threaded through his nose and taped to his face where it attached to the pump. I detached that end from the pump and went about trying to peel the tape off his face. He jerked, grabbing for my hand.

  “Please,” I asked softly this time, tucking him in between two dry towels and aiming the fan directly at his hot skin. He had taken all his clothes off in an attempt to get cool—an escape from the fever that burned in him day and night. His usual lean body had become anorexic, bony, and dry, and his skin sagged on wasting muscles.

  Sue stood in the corner while I picked at the tape again.

  Andrew exploded off the bed. “I have to get up now! I’m gonna be sick!”

  Sue reached for him and led him to the bathroom where he lay on the cold tile, naked. Deep guttural moans ricocheted off the bathroom walls, ripping me to my core. We’d been doing this for months, for years actually, and it was only getting worse. I wondered how much a person could take before they said, “That’s it, I quit!”

  Andrew screamed again and I heard a splash on the tile.

  Sue waved an arm in my direction. “I can handle this. I want you to leave, take the dogs for a walk, and don’t come back for a while.”

  I obeyed without protest, barreling out the door with two jacked up dogs at my heels. I would get as far from the house as I could, far enough away that even if I had bionic ears, there would be no way I could hear the sounds of pain coming from my home. I clipped a leash to each dog and took off at a dead run, down the block and to the next, until I couldn’t breathe and my own pain felt like ecstasy.

  An hour later I came back, tear-streaked and sweaty, ready to walk back into my life. I didn’t know what to expect when I opened the door, but I didn’t expect this.

  Sue was sitting quietly on a low-slung IKEA chair next to Andrew, the rumble of laundry in the next room was music to my fried brain. Andrew was passed out on the downstairs playroom floor on a makeshift bed. Figuring it was the only place in the house cool enough to survive the July heat, Jon and I had fashioned a bed out of sofa cushions and sleeping bags, topped with an old foam bunk-bed mattress, which we shoved next to a north-facing window. I noticed Andrew’s feeding tube had been removed and his face was washed. Sue was praying, or what I took to be praying, because her eyes were closed and her lips moved as if she were having a secret conversation. She told me once she prayed for Andrew, prayed for mercy, grace, and healing for this boy she’d grown to love. Conversing with God wasn’t new to her, but this level of misery was, and it pained her in a way that broke her heart.

  Andrew stirred and opened one eye.

  “Should we read a new book now, Andrew?” Sue asked, leaning forward to pull a thin cotton blanket over his legs.

  Andrew didn’t respond, but she could see his eyes were open now, unblinking, staring out the window. She sat quietly, and waited.

  The day Sue arrived as our respite care provider, Andrew’s pain had been so intense that he could barely speak above a whisper. When she asked what he liked to do, he’d replied, “I like hero stories.”

  So she began to tell him made-up stories using characters from old Judy Blume books she found in Andrew’s closet. But her stories weren’t regular stories. These stories included superheroes Andrew had fashioned in his own mind. These stories transported him to an imaginary world where he could escape the nightmare that had become his life. And Sue was the one who took him there, to the only place he felt safe.

  After a moment, Andrew raised a quivering hand in which he clutched a mini SEGA action figure named Shadow.

  “Okay. Let’s put Shadow in this book instead,” Sue said.

  She settled back into her chair and opened Judy Blume’s Super Fudge, to the place where Fudge was teaching his mynah bird, Uncle Feather, to talk.

  “This reminds me a little of you and Frightful, right, Andrew?” she asked.

  Andrew nodded, then sighed and kicked the blanket off his legs. Moments later he began the slow grind of pedaling his feet up and down the mattress against the pain.

  Sue placed a hand across his thin, wiry legs. “Be still, my friend. What are Shadow and Fudge doing? Describe it to me.”

  Andrew remained still, but made no effort to talk. Outside, a brood of hens scratched at Jon’s newly planted flowerbeds, sending showers of fresh mulch across the walkway. A small, bronze and black colored hen hopped up on a broken flowerpot that had been pushed against the window.

  “Tick. Tick.”

  I am here.

  Andrew groaned and rubbed at his chapped and swollen face. At sixteen, he was tall—nearly five foot ten—but he weighed little more than one hundred pounds. For months, sudden fevers, pain, and nausea had become constant companions that we battled with a combination of anti-emetics, narcotics, Advil, and Tylenol. During the nig
ht, another fever had fingered its way up his body, leaving his skin dry and splotchy and bathing his cheeks and lips in a deep crimson. Even his usual shimmery red hair seemed faded and dull, plastered to his face in salty clumps.

  “Tick. Tick. Tap.”

  Look at me.

  Frightful, the bronze-colored hen, pressed her body next to the window and turned her head to the side, regarding Andrew with one yellow raptor-eye. Although she was a petite hen, she queened over the others, puffing her feathers to appear larger, while throwing back her head in a loud squawk! if any hen dared to challenge her. She reminded me of the red-tailed hawks we frequently saw circling the tops of the evergreens in our yard, and she had an attitude to match. A low rumble came from Frightful’s chest as she rocked from foot to foot before mashing her chest to the windowpane.

  “Tap-tap-tap…KACK!!”

  Look at me…NOW!

  Andrew turned to face the window. With a slender white finger, he circled the chicken’s gold, caramel, and black feathers, tracing the areas where the little hen had left a trail of chicken snot in her attempt to get his attention. He pressed the dirty pane with the pad of his pointer finger, saying, “I hear you, Frightful.”

  The chicken backed off, shook violently, and settled her feathers back into place. She made an elaborate show of easing her body down on top of the broken flower pot where she perched, while never breaking eye contact with her best friend.

  “I’m here, Frightful,” Andrew repeated again before falling back into sleep.

  While Sue read her newly formed story starring Fudge and Shadow, I crept down the hallway into Jon’s office and crawled under the desk. A litany of horrors tackled me as I thought about what was happening to our lives. Would we survive? How many blows could a person take before they curled up and died? I wondered. Although Sue came for a few hours each day to provide me respite, the truth was I was almost always too scared to leave the house. Fear had pinned me to the floor.