Not My Plan: A Mother’S Unexpected Journey.

By Joyce Yexley

As Joyce Yexley shows us in her journey of raising a daughter with special needs, she searches for something better. While struggling with her own inadequacies and fears, she discovers hope and strength in her new role as a grieving caregiver. Joyce speaks to parents of children with special needs who yearn for something better than the doctor's diagnosis. Join her as she searches for medical answers and spiritual truths that lead her to a better place with peace, joy, and God's faithfulness.

• Language: English
• Publisher: WestBow Press
• Release date: Aug 19, 2015
• ISBN: 9781512706901

Joyce Yexley

Joyce Yexley is a fashion historian, writer, and speaker. She holds three advanced degrees. As approved speaker for Stonecroft Ministries, Joyce has traveled six states sharing her faith journey to women’s organizations. She has published articles in faith-based and women’s magazines. She has served on the board of Cass County Historical Society. Previously, Joyce worked in the home furnishings industry for twenty years as a design consultant, buyer, and manager. Her business, A Century of Fashion, is a fun-filled presentation including vintage fashion, live models, music, and a power point. Joyce shares fashion programs to venues such as museums, fundraising events, schools, reunions, and centennial celebrations. You can learn more about Joyce at www.joycesjourney.com.

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Copyright © 2015 Joyce Yexley.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

Scripture taken from the King James Version of the Bible.

WestBow Press

A Division of Thomas Nelson & Zondervan

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Bloomington, IN 47403

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Please note many of the names of our friends, family and doctors have been changed to protect their privacy.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

ISBN: 978-1-5127-0691-8 (sc)

ISBN: 978-1-5127-0692-5 (hc)

ISBN: 978-1-5127-0690-1 (e)

Library of Congress Control Number: 2015912656

WestBow Press rev. date: 08/18/2015

Contents

Dedication

Acknowledgments

Introduction

Chapter 1     From Tomboy to Caregiver

Chapter 2     Unanswered Questions

Chapter 3     Discovering Disabilities

Chapter 4     Footprints and Farms

Chapter 5     What is Grief?

Chapter 6     Back to Work

Chapter 7     Finding a Home

Chapter 8     Another Surprise

Chapter 9     Fear Not

Chapter 10     Seeking Hope

Chapter 11     Costume Therapy

Chapter 12     A Desperate Mother

Chapter 13     Twinkle, Twinkle

Chapter 14     The Body Cast

Chapter 15     The Adoption

Chapter 16     Will She Walk?

Chapter 17     Moving

Chapter 18     The Unexpected Journey

Chapter 19     Teachers and Therapists

Chapter 20     The Christmas Surprise

Chapter 21     Autistic Angst

Chapter 22     Helping Hands

Chapter 23     The Extraordinary Journey

References

DEDICATION

This book is dedicated to the doctors and medical providers who helped our daughter overcome her multiple medical challenges. A heartfelt thanks is extended to the therapists, teachers and education system that supported our family to live an enriched life.

I am grateful to my extended family and sister Yvonne who have encouraged me through countless phone calls, medical challenges, and never-ending prayers.

My deepest appreciation goes to my loving husband Dave, who stayed devoted, dedicated and committed to our extraordinary family and me. I love you.

ACKNOWLEDGMENTS

This book is based on my personal journey of raising my daughter with special needs. From the beginning my sister and registered nurse Yvonne encouraged me to document and share Amy’s story with other parents who needed hope. Without her persistence, this book would not have been written.

A special thanks to Julia Penner-Zook and Joyce Eisenbraun whose feedback, prayers and comments were invaluable in editing the manuscript.

A special thanks to the late Dr. Albin Janusz who assisted us during a critical period.

INTRODUCTION

Up until the age of twenty-seven, I had never interacted with anyone who had autism, cerebral palsy, seizures, or hydrocephalus (fluid on the brain). After doctors diagnosed my baby with severe brain damage, these medical terms became a part of my everyday vocabulary and life. My motherly radar tuned into every baby and child with special needs, with my persistent question becoming, How can I handle my daughter’s medical condition?

Later, we discovered Amy loved music and rhythm.

At thirty-two months, Amy suddenly displayed a new skill. At the end of one of Amy’s therapy sessions, someone began playing Twinkle, Twinkle Little Star on the piano. When I turned to see where the music was coming from, I saw Amy leaning against the piano, playing the song with her right hand. Astonished, I froze in place.

Amy’s teacher rushed over to me, Did you hear Amy play the piano?

Yes, I did, I responded breathlessly, But, how is that even possible? I can’t believe it.

How did Amy play a song on the piano perfectly? I had no idea. We didn’t own a piano or an organ; neither had my husband Dave or I ever heard Amy play any song on a piano. In fact, Amy’s audiologist still considered her totally deaf.

Baffled but excited, I didn’t care how or what she played; what mattered at that point was that she could play. After that day, my mother gave us the organ from her and Grandpa’s farmhouse. Instantly, Amy started playing songs on the organ, sitting three to four hours every day, repeatedly playing two or three stanzas of various songs. Sometimes she played songs she had heard in church, such as What a Friend We Have in Jesus or Jesus Loves Me. Later, it could be a song from the radio. She enjoyed country music like Through the Years by Kenny Rogers. Most of the time, however, she played songs from an old music tape, which we played at bedtime.

At that time, I never wondered whether Amy was unique, I was just grateful she had a skill that my husband and I enjoyed. Her music soon became her form of communication, her daily routine becoming organ playing. She loved to have us stand and listen to her play. Sometimes, she appeared to be locked inside an unresponsive state when she played, closing her eyes and swinging her head back and forth to the beat of the music. She seldom looked at the keys.

When I became a mother, I had no idea what the future would hold for my daughter Amy, my husband or me. This journey began without my approval. It became the story of a family raising a special child named Amy. On this journey, Amy underwent twenty-four surgeries in the first eighteen years of her life. Our family life revolved around doctors’ appointments, and searching for answers from doctors, therapists, teachers and pastors. Some of the answers, however, were buried in the cerebellum of Amy’s brain. But quite honestly, many of my questions were directed toward God. How could I find hope and joy while struggling with my fears?

During the unexpected journey of raising Amy, a profound change took place in me. As I searched for truth, Christ became more real to me. A new inner strength developed that I couldn’t describe. My heavy sadness disappeared. Life with Amy still had struggles and complications, but I learned to trust in God’s higher purpose. Several people have asked me, How can you be so happy and upbeat? The truth is, It is no longer I, but Christ in me. Galatians 2:20

In July of 2014, I received an answer to one question: Is my daughter a musical savant? According to Dr. Darold A. Treffert, the foremost leading expert on savant syndrome, the answer is yes. He has studied savant syndrome for over forty years.

CHAPTER 1

From Tomboy to Caregiver

I loved being a tomboy. At ten, I enjoyed helping Dad on the farm. My father, Alfy, was a tireless farmer who spoke few words and nicknamed me Jo––a perfect name for a tomboy. However, Mom had other plans. She taught me how to scrub floors, freeze corn, can pickles, make jam, defrost the icebox, and refinish furniture. I hated ironing and cooking. Unfortunately, it wasn’t a choice.

Then it happened. My body started changing. Mom described the development of a woman’s body. As she did so, I began to shake and a gray film covered my eyes. Mom caught my head as I fainted. This couldn’t be happening to me! I felt safe in my tomboyish form and hoped Mom had exaggerated.

The next Saturday, Mom invited me on a shopping trip. I anticipated a fun day, hoping for new art supplies and a new pair of stretch pants. Instead, Mom bought me a white training bra. My small chest now contained two walnut-sized bumps. Why do they need training? I wondered ruefully. Mom used her chest like a mailbox, storing receipts and notes. Her chest jiggled––a lot. Dear God, please let my chest remain small, I prayed inwardly.

Although I loved my tomboy status, my heart’s desire was to grow up, be married, and to have children. In college, I met a farm boy with a strange sense of humor who made me smile, giggle, and laugh outright. I married my college friend––the farm boy and my sweetheart––Dave.

Two years after our wedding, my secret desire came true. I became pregnant at the age of twenty-seven. We were excited, eagerly anticipating becoming parents. My heart’s desire was about to be realized: I would be a mother.

All seemed normal until my seventh month of pregnancy when all of my energy evaporated. My doctor told me that my body had become toxic. Although I wasn’t sure exactly what that meant, I knew my pregnancy suddenly was not pleasant.

I worked in a furniture store, and at 5:00 p.m. one afternoon, I shuffled through the showroom, turning off lights and locking the front doors, thankful it was time to go home. My mind felt fuzzy; and my body was more sluggish than usual. In those few short months, my feet had swollen from a size 8 ½ B to a size 11D. The only shoes that fit my chubby feet were a pair of cheap loafers. Hopefully, my feet and waistline will return to normal within a few months, I breathed silently.

While driving home over the snow-packed roads, my body started quivering. I was afraid I would faint.

I arrived home and was standing in the kitchen checking through the mail when a severe pain gripped my abdomen. Doubling over in agony, I noticed blood pooling at my feet. I quickly wrapped a dishtowel around my bloody slacks and looked for the telephone book. At this time, I didn’t know that my placenta had torn away from my uterus and blood was pooling in my abdomen. My due date was still six weeks away.

I called my doctor’s office and was urged to go to the emergency room immediately. Since I didn’t dare drive, I tried to reach Dave. It took me one frantic hour of calling Dave’s business friends to finally locate him.

As soon as Dave received the message, he raced