Mark and Me: A Father's Life-Changing Odyssey Beside a Son with Down Syndrome - How I Discovered His Disabilities Are His Unique Gifts

By Paul Taylor

Have you experienced a life-changing event that began on the closet floor? 

 

Paul Taylor did. This singular event occurred late in the

• Language: English
• Publisher: Paul Taylor Author
• Release date: Jun 29, 2022
• ISBN: 9798985393033

Paul Taylor

Author Paul Taylor was born and raised on a gentleman’s farm in the foothills of the Blue Ridge Mountains in Alabama. Paul has dedicated his life to understanding and communicating the complexities, interrelationships, politics, sciences, economics and global significance manifested in environmental matters. Mr. Taylor has authored two prior book: “Green Gone Wrong” and “Climate of Ecopolitics.” He has a B.S. degree in Biology/Chemistry and a Master of Science degree in Environmental Science from the Tulane University School of Public Health. Paul also has post-graduate environmental training from the University of Alabama Marine Sciences Institute, the University of Maryland, the University of California at Irvine, the Massachusetts Institute of Technology and the Tulane University Law School. And, Paul has been a Registered Environmental Assessor in the State of California. Paul is instructor and curricula developer as faculty in Environmental Science Studies at two Los Angeles universities, and at three other colleges campuses in Southern California in recent years. Paul is founder and principal of Paul Taylor Consulting -- Environmental science and energy consultant to institutions, commercial, industrial and governments, with specialty in scientific environmental impact reports, air and water pollution, wetlands and wildlife resources, sustainable energy and land use. Environmental compliance strategist and court expert witness. Mr. Taylor has posted hundreds of influential “Opinion Comments” in The Wall Street Journal concerning environmental issues -- Ecopolitics. Paul was a weekly contributor as the “Los Angeles Ecopolitics Examiner” under contract to Clarion Media from 2009 to 2013. Over the years he has been published in the Los Angeles Times, The Wall Street Journal, San Francisco Chronicle and The Washington Times.

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MARK AND ME

A Father’s Life-Changing Odyssey Beside

a Son With Down Syndrome

How I Discovered His Disabilities Are His Unique Gifts

PAUL B. TAYLOR

Copyright © 2022 Paul B. Taylor

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

ISBN: 979-8-9853930-0-2 (Paperback)

ISBN: 979-8-9853930-1-9 (Hardcover)

ISBN: 979-8-9853930-2-6 (Hardcover-Dust Jacket)

This book is a work of nonfiction. Certain names and identifying characteristics have been changed.

Cover Design by Robin M. King

Cover Photo: Shutterstock

First printing edition 2022

www.paultaylorauthor.com

DEDICATION

Mark has touched countless lives in ways they might never have imagined. Yet, it is not a one-way street. Many have seen the spirit housed inside his body. Each has nurtured it in their unique way, having played, or continuing to play, a meaningful role in influencing who he is today.

One of those people is Charlene Behrends, to whom this book is dedicated. Charlene played an instrumental role as one of Mark's initial elementary school teachers. Tension filled those first years as we sought Mark's placement in the regular classroom. Two sides stood firmly entrenched. Susan and I assembled those who supported our efforts. The other side marshaled district and school administrators, staff, and teachers who opposed the standard classroom setting and advocated placement in the Special Education location where they would bus Mark.

We won a several-year emotional struggle to place Mark in the regular classroom. Charlene was one of Mark's strongest advocates. She set a standard for including a child with disabilities by engaging him and involving the other children in that effort.

Even after our move from the area, Charlene maintained contact with Mark through cards and letters, eventually becoming Facebook friends.

Sadly, Charlene passed away much too early in 2020. Our family is grateful for her relationship with Mark. We only learned of her death shortly after the fact. This dedication is a modest expression of our appreciation for her efforts on Mark's behalf.

CONTENTS

Dedication

Introduction

1. THE BEGINNING

The Call

Mark's Family

Why This Book?

Excerpts from Susan's Letter

2. THE FIRST YEARS ~ STORIES AND EVENTS

Introduction

Heart-Rending Phone Calls

Mark's Open-Heart Surgery

Where Are His Glasses?

The Rubbermaid Tub

3. THE FIRST YEARS ~ LESSONS AND OBSERVATIONS

The Power of Vision and Hope

Mini-Abraham Experience

4. THE ELEMENTARY SCHOOL YEARS ~ STORIES AND EVENTS

Introduction

The Escape Artist

Mark Out. Mark Out.

Saturday Morning Doorbell

The Golf Course

Do You Shave Your Legs?

Big Wheels Adventure

Bishop, Go Fishing

5. THE ELEMENTARY SCHOOL YEARS ~ LESSONS AND OBSERVATIONS

Mark Starts School—How to Change a Community

Our Mission Statement for Mark

Mission Statement

Mark's Baptism—How the Chapel Filled

Sincerity - Boy, That is a Very Nice House

6. THE TEENAGE YEARS ~ STORIES AND EVENTS

Introduction

You Did It on the Bus?

Interview - One Man's Experience with Mark

No Hiding in the Laundry Chute

Innocence Can Be a Painful Teacher - The Police at the Door

7. THE TEENAGE YEARS ~ LESSONS AND OBSERVATIONS

Persistence - Part One

Hitting the Net

Wanting to Marry

Dealing with My Embarrassment

Confidence - I Good on Mario Kart

Not Limited by Fear of Failure

The Gift of Time to Repent

The Snow Cave - An Outpouring of God's Love

Mark's Concept of Hurry Is Nonexistent - but Teaches Me Patience

Tying His Shoes

8. A YOUNG ADULT: PART ONE ~ STORIES AND EVENTS

Introduction

Mark the Missionary

Xbox - Who Needs Printed Instructions?

Deleting Texts - One Step Ahead of Dad

Mark's Texting

Mark and Eating -

Mark Loves His Mom

Concern for Dad

Mark and Not Feeling Well

Social Media

That Kid Needs Boundaries!

9. A YOUNG ADULT: PART ONE ~ LESSONS AND OBSERVATIONS

Discouraged, Mad, or Sad? - No Agony of Defeat

Special Needs Baseball

Golden Rule Modified—Tolerance in the Checkout Line

Finding Joy in Our Circumstances - What’s My Disney Junior?

Star Wars Bar Scene

Do Not Define by Outward Appearance—An Angel at the BART Station

The BART Station

10. A YOUNG ADULT: PART TWO ~ STORIES AND EVENTS

"Come Get the Cheese

Mark and His Music

Wii Bowling - Don't Challenge Mark

Instagram - Dad Is Further Behind

Ministering Visits

11. A YOUNG ADULT: PART TWO ~ LESSONS AND OBSERVATIONS

Lessons on the Atonement from the Emergency Room with Mark

Mirror, Mirror on the Wall

Filling a Void – Stepping in As Teacher

Mark's Bright Light - And That of One of His Friends

Learning about Your Son on the Radio

Mark's Concept of Favorite—Evidently There Can Be More Than One

12. A YOUNG ADULT: PART THREE ~ STORIES AND EVENTS

Mark and the Unaccounted Cash - Busted by a McDonald’s Breakfast

That’s My Foot You’re Playing With

Persistence - Part Two: Attending John’s Funeral

Enter the Driving School Instructor - Ugh!

Mark as Santa Claus

13. A YOUNG ADULT: PART THREE ~ LESSONS AND OBSERVATIONS

Illness, Death, and Prayer - Dad, You Lay Down by Me Few Minutes?

Who Communes with Angels?

Observations from a Father of a Son with Down Syndrome:

Spiritual Types in My Relationship with Mark

Advocacy

Dependency

Boundaries

Humble Requests

The Relationship between Sacrifice and Service

Mark's Gift of Love - There Is Nothing Greater

Mark the Contradiction

14. QUESTIONS WE ARE ASKED ABOUT MARK

Is Mark High Functioning?

Is Life with Mark Hard? - It Depends on What Life You are Preparing For

Is Mark Disabled or Handicapped? - Aren't We All?

15. A FINAL WORD

About The Author

References

The only true gift is a portion of thyself.

~ Ralph Waldo Emerson ~

"If we are to achieve a richer culture, rich in contrasting values,

we must recognize the whole gamut of human potentialities,

and so weave a less arbitrary social fabric, one which each

diverse gift will find a fitting place."

~ Margaret Mead - American anthropologist ~

INTRODUCTION

Friday, March 6, 1987, began innocently enough. The brewing storm that would forever rob the day of its innocence hid temporarily behind Chicago's lovely spring weather. It erupted later in the day. The call. It mocked the tranquility of the morning's beauty. Hearing the words, Mark has Down syndrome, I collapsed to the closet floor.

Thus began a journey with no fixed guideposts. The book describes my odyssey from the despair and darkness of that closet floor to one of light and gratitude for the gift my son is. I have progressed from focusing on the challenges of his disabilities to appreciating them as unique gifts touching others. I no longer view him as one largely dependent on others. But instead, I recognize his contributions to those around him.

This is not a How-To Guidebook on living with those with disabilities. Instead, it reverses the perspective and discusses their influence on us. They have talents and attributes to bless our lives in ways we never imagined if we are willing to be taught. The book should more appropriately be entitled, How to Train a Father of a Child with Disabilities.

Mark and Me, a Father's Journey Beside a Son with Down Syndrome includes over 80 stories, vignettes, and lessons drawn from life with Mark written from different but complementary perspectives.

~ First, my voice recounts lessons learned over 30 years as Mark's father.

~ Second, and equally important, the voices of others. I contacted people who have known Mark, some since his birth. Their contributions, some serious, some light-hearted, provide their reaffirming testimony to my own; the Marks in our lives influence not only their fathers but countless others.

Let me tell you what I am not. I am not a psychologist, social worker, philosopher, or someone trained in analyzing and treating human relationships, though, in the interest of full disclosure, I am the son of a psychiatrist. Mothers write most articles, blogs, and books addressing children with disabilities. These accounts provide glimpses into their lives.

I add a father's voice to complement those mothers who share tender blessings and touching moments emanating from the care of children, who, on the first glimpse, would seem to be the least likely of teachers. As mentioned above, I include accounts of others to demonstrate the Marks in their lives inspire more than family and relatives, but all within their sphere.

The reader will notice my slow, sometimes forced learning that if I step back and allow Mark to be Mark, the roles reverse as to who teaches who. Yes, he needs assistance with certain temporal and physical aspects of his life. But far more importantly, he humbly demonstrates attributes that form the basis for caring human relationships as a natural extension of himself.

Mark teaches by simply being who he is. It took me a while to allow Mark to function in this role; I am the father, after all. The remarkable result is that I became less stressed in my relationship with him and less consumed with what he needed to learn from me. I realized there were lessons I could not teach him because he already exemplified the learning.

The book contains separate but interwoven threads. Each deals with a different perspective as to the purpose of life. The first presents the lessons Mark and his peers teach us about personal character and human relationships at the most basic level. Mark embodies the qualities that would reduce society's problems if we followed his example. The book presents numerous examples in this regard.

The second encompasses the first. It is perhaps less evident in the narrative but is essential when we introduce faith and the belief in a life beyond this one into the discussion. Living a good life is an admirable goal in and of itself. But when viewed from an eternal perspective, the same qualities contributing to such a life become even more vital in preparing for that eternal existence.

Faith is a central component of my life. Irrespective of my failings, it is the guiding principle in my approach to living. It influences all my important decisions, which I view through this prism of faith. The Marks around us model the qualities we need to refine to enjoy the life they are prepared for already. Mark has been my guide and companion on a journey of increased spiritual understanding. The book incorporates some of these lessons with The Snow Cave chapter recounting the most intensive spiritual episode in my life. Multiple waves of Divine love inundated me while Mark, others, and I were on a winter campout. We survived what I thought would be our certain deaths when a snowbank collapsed on us, burying us under a mountain of snow.

Mark is my unexpected teacher, both in temporal and spiritual terms. I know no one who walks the walk and talks the talk better than he unless it is one of his peers. Mark continually influences me to be a better person, husband, and father than I would be without him. Friends who know him say the same; he affects all lives for good. May the book awaken an appreciation of who is in our midst, and may we recognize our unexpected teachers.

Excuse me. The phone is ringing.

1

THE BEGINNING

The Call

Friday, March 6, 1987, began innocently enough. The brewing storm that would forever rob the day of its innocence hid temporarily behind Chicago's lovely spring weather.

In the late morning, I had been in downtown Chicago with my two youngest daughters, Rachel, age five, and Lis, age three. We stopped by my office for a few minutes, and then, as a special treat, we visited the Sears Tower, then the world's tallest building. Excitement hung in the air for a different reason, though.

My son, Adam, and my oldest daughter, Sarah, attended school. Both were finally home. The three girls talked enthusiastically about visiting their mom, Susan, but even more so, they wanted to see their new baby brother, Mark, who had arrived in the early hours that morning.

The phone rang, interrupting my harried attempts to gather the four kids and herd everyone out to the garage and into the van. Without caller ID, I didn't know who it might be, and I didn't want to delay our departure to the hospital. I answered the phone with ambivalent feelings in case it was a relative or friend responding to our good news.

Hello.

Hi. It was Susan. My joy fled instantly when I sensed the heavy-laden tone in her voice. Her somberness carried an ominous quality compared to the greeting's usual cheerfulness. A dreadful feeling descended over me.

Susan, what's wrong?

Are you alone? she asked in a trembling voice.

Again, but more fervently, Susan, what's wrong?

Are you alone? she repeated, each word spoken slowly.

No, I'm with the kids, getting ready to come and see you.

Go find a place where you're alone. The dread now fully engulfed me as the plaintive plea borne in her barely whispered volume signaled something terribly wrong.

Whatever her news, she didn't want the kids to hear my end of the conversation. Privacy seemed paramount. I trudged up the stairs with leaden feet, phone in my left hand, right hand supporting myself with the railing. I climbed in a daze. Had Mark died? At the top of the stairs, I turned right into our master bedroom, closed its door behind me, then veered left past the crib, which waited silently, anxious for its newest occupant. My final steps took me to the right and into the walk-in closet, where I closed this second door. I stood insulated from the kids downstairs.

I'm in our closet.

With tearful, saddened emotions, Susan quietly whispered the words, Mark has Down syndrome.

I cried out in anguish. I sobbed. And sobbed. I continued as never before in my life. I could not stop. Words did not escape me, but an anguished, aching cry repeatedly wracked my being with each gasping breath I