Sandra Bartel - Joe: A Life of Mischief, Humor, and Joy

A Life of Mischief, Humor, and Joy

Sandra Bartel

Sandbur Publishing

2018

Table of Contents

Joe: A Life of Mischief, Humor, and Joy

2018 Sandra Bartel

All rights reserved.

Printed in the United States of America

No part of this book may be used or reproduced in any

manner whatsoever without written permission from

the publisher except in the case of brief quotations

embodied in critical articles and reviews.

Edited by Connie Anderson, Words and Deeds, Inc.

Design by Sue Stein, Dragonstone Press

Photos Sandra Bartel

Photo of Joe in Chapter 13 courtesy Cortney Molling

Sandbur Publishing

La Crosse, Wisconsin

Dedication

In loving memory of our parents, Jim and Rita, for all

the times you said, I wish I had kept a book of stories

about some of the things Joe has said and done.

Introduction

He is the joy in my heart, and the pain in my ass.

That is how I have often described my brother, Joe. Born with Down syndrome, he is full of love and sweetness, sure, but it is his lifelong unintentional humor, mixed-up sentences, funny conversations, innocent adventures, goofy faces, spot-on imitations when describing what people look or sound like, and his unending rascally antics that led me to write this book.

A family friend described Joe as, Special, because hes Joe, a young man completely guileless when dealing with others. He possesses a freedom to be himself and sometimes to ignore convention and act on impulse. Havent many of us wished to act on a whim, or disregard being tactful at times?

Yes, we have, but Joe, it seems, always takes it to the next level.

All anecdotes, Joe-isms, conversations, and adventures are stories of true events that were submitted over the years by family, friends, relatives, neighbors, teachers, and anyone else who has ever had the pleasure to experience an encounter with Joe.

This book is written with a deep respect for those who have raised or cared for an individual with Down syndrome. My hope is that their lives have been as profoundly enriched by their special person as I have been with Joe.

Joe has lived with my family, husband Paul, and children Bryan and Beth, since 1996, joining us when he was twenty-six. He has been a constant source of joy and laughter (and clearly, some frustrations). Just when we think we have seen or heard it all, he comes up with something new.

My hope is that I have captured and conveyed both the essence of his character through his wacky, playful, hilarious life experiences and adventures, and silly Joe-isms, in addition to his unique and charming personality.

It is with gratitude and appreciation to my family and friends for their encouragement that I share these stories.

CHAPTER 1

Birth to Age 4

Joseph was born just before Christmas 1969.Another baby in the household was no big deal as he was the tenth child in the family, preceded by eight older sisters and one brother. Another sister would be born five years later. I am the fourth oldest child in our family.

As an eleven-year old, I learned quickly that this baby was a big deal. I was giddy with excitement on Christmas Eve day when Dad gave me permission to go with him to bring my mom and baby brother home from the hospital. Dad and I walked hand in hand into the hospital, and as we took the elevator up to the fifth-floor maternity unit, he seemed preoccupied with thoughts other than the exciting fact that today was Christmas Eveand we were here to take baby Joseph and Mom home.

As we approached the nurses station near Moms room, we were greeted by sad smiles and kind hellos from the staff. Our arrival at Moms private hospital room interrupted a conversation she and the doctor were having. Baby Joseph was in the nursery. I skipped off to look out the window. Once the novelty of being five floors up off the ground wore off, I joined Mom and Dad as the doctor continued the discussion.

This was a happy day for me to be bringing another baby homeand to be the first of my siblings to see, touch, and kiss him. The conversation between the doctor and my parents continued. I was not included but knew enough to not interrupt. I heard words unfamiliar to me: Down syndrome, disabilities. What did those words mean, and what did they have to do with our family? Why did Mom have tears in her eyes and Dad look so sad? Then I heard the word institution.

This was a time when children with varying disabilities, including those with Down syndrome, were sometimes institutionalized. I remember as my mom wiped away her tears, drew in a long breath, and with a stern look, she and my father told the doctor in no uncertain terms that there would be no institutions for Joe. Absolutely not! He will be raised by us in this family, just like all his sisters and brother. He will walk. He will talk. He will go to school. He will be cared for and loved just as our other children.

Before the doctor left the room, he hugged my mom, shook my dads hand, nodded, and said, I have no doubt you will raise him as beautifully as your other children, and that Joseph will be a happy child in your home. Then Mom gave me a big smile, hugged me tightly, and suggested we get home to show everyone our new baby brother.

Years later our dad would describe his first reaction to learning that his son had Down syndrome like diving into a tank of ice water. He went on to say, After that, it is life. Im glad he was born into a large family and not as an only child. Meaning, I would guess, that by then he and my mom were seasoned parents, and there would be other kids to help with his care and supervision.

A day or so after coming home from the hospital, my mom put baby Joey, as we all called him, in the middle of our large dining table. All of us children hovered around him, checking him out. She explained that Joey was special. She pointed out his unique features: his inward curved pinky fingers, flat feet, elongated tongue, upward-slanted eyes, and tiny ears. His weakened muscles would need special exercises; he was going to be slower to walk, talk, and to do the same things we did, she said. Most of all, we were to love this special baby because he would need all of us to help him to learn and grow. Oh, and one more thing she told us: You will never, ever, tease anyone if they are retarded or be mean to others, telling them they are a retard.

Two weeks after his birth, my parents went out for dinner and several of the older sisters babysat Joey. As we changed his diaper, his umbilical cord came off. We thought we had broken him. Frightened, we called the restaurant, asking specifically for our mom. We were too scared to talk to our dad for some reason, thinking he would be real mad at us. Through tears, one of us told mom what had happened, and that we think we broke the baby. She cried with laughter, promising to be home shortly. Minutes later she arrived home to comfort her frightened daughters. She explained how babies receive nourishment and oxygen in the womb through the mother, and after the baby is born, the umbilical cord is clamped and cut in a painless procedure. She showed us the dried-up stump, and how Joeys belly button would look like ours once it was healed. We were so relieved to know we had caused no harm to the baby.

According to our moms notations in his baby book, Joe did indeed develop at a slower pace. He was ten months old before he could sit up straight by himself; his first real crawling wasnt until he was a full year old; and his first tooth didnt come in until he was fourteen months old. Generally, the first baby tooth comes in at about six months. Joe was a calm, happy baby. On his first birthday, like most other children, he put his fingers in the chocolate frosting on his cake and right into his mouth with a big smile as he discovered this new sweet flavor.