Believing In Beth

By Edith McGrath and Marci McGrath

An inspiring true story, Believing In Beth reveals how the birth of one special little girl, Beth McGrath, turns her family’s life upside down. As a result of Congenital Rubella Syndrome (CRS), Beth continually struggles to escape into a world of her own. For the love of her daughter, Beth’s mother Edie, is determined to make Beth live in her family’s world. She resigns her job and dedicates 20 years to challenges unique to Beth, because she was “born to be different.” When Beth is two years old, her sister Marci arrives, and over time begins to imitate Beth, exhibiting self-stimulatory behavior, acting deaf, not talking, and avoiding eye contact. Marci unknowingly demands the same attention as Beth. These behaviors begin to overshadow normalcy, distressing both parents, Edie and Earl.

This heartrending story full of inspiration and speckled with humour, portrays the growing courage, strength and faith of her parents, and over time her sister Marci, as they confront their challenges one by one. The family’s belief in Beth allows them to rise above all and rejoice in the knowledge that they have truly been blessed by her presence. The struggles were many — the rewards even greater.

• Language: English
• Publisher: Hawthorne Lane Publishing
• Release date: Dec 21, 2016
• ISBN: 9780980934663

Book preview

Believing

In

Beth

by

Edith McGrath and Marci McGrath

Copyright © Edith McGrath and Marci McGrath

All rights reserved. No part of this work may be reproduced, stored in a retrieval system or transmitted or used in any form or by any means, electronic or mechanical, including photocopying, recording, or any retrieval system without the prior written permission of the publisher, or, in the case of photocopying or other reprographics copying, permission from Access Copyright, 1 Yonge Street, Suite 1900, Toronto, Ontario M5E 1E5 (www.accesscopyright.com) 1-800-893-5777

Publisher: Hawthorne Lane Publishing, Quispamsis, NB

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eBook conversion: Gatekeeper Press, Ohio USA

Graphic Design: Corey Dickinson

Library and Archives Canada Cataloguing in Publication

McGrath, Edith, 1959-, author

Believing in Beth / Edith McGrath, Marci McGrath.

ISBN 978-0-9809346-6-3 (eBook)

Cataloguing data available from Library and Archives Canada

This book has been awarded a Canada Book Awards.

A percentage of the proceeds from the sale of this book will go to the special care home where Beth resides. A donation will be made to the New Brunswick Chapter of the Canadian Deafblind Association.

Reviews

This book touches your heart and opens your eyes. A definite read for child care workers, parents, teachers, clergy, really anyone! Touched to tears…I had to read on!

Thanks Debbie Stephens (Reader)

Believing in Beth is a truly inspirational story of a young family’s journey after their new-born daughter, Beth, is diagnosed with Congenital Rubella.

Earl & Edie’s many heartaches, worries, trials and struggles are handled consistently with determination, patience and love - enabling Beth to reach her full potential. The joy and pride they feel in Beth’s accomplishments is evident.

Tempered with humor, Edie shares Beth’s life with us while revealing her own deepening faith journey.

Kathy Bridges (Reader)

Prologue

St. Martins, New Brunswick is a coastal community of tranquility where the landscape imprints itself upon your memory and calls you back. Nestled on the outskirts of St. Martins is a tiny place called West Quaco. This is the place where Edie and Earl McGrath built their home, raised their two girls, Beth and Marci, and cemented their lives as both a family and respected members of their community. It is the place where dreams were broken and complications rolled in like waves upon the shore. It is where struggles turned into achievements and insights changed despair into gratitude.

When I first drove into their driveway, as the assigned teacher of the deaf and hard of hearing, I noticed the organization that surrounded the house, yard and land. Edie greeted me at the door and I stepped into a kitchen that reflected the same neatness. In the midst of this order there was a little girl who sat on the floor flapping her hands and spinning like a top. She was beautiful; blond with blue eyes behind glasses.

As an educator, I was aware of Beth’s diagnosis; Congenital Rubella Syndrome. The complexities were global; deaf and blind with cardiac and cognitive challenges, I was but a piece of the puzzle, another person who was part of a multi-disciplinary team that surrounded Beth from the time she was born and then throughout her life. Many of us came and went over time—the constant factor was her mother.

Edie questioned, absorbed and followed through with every suggestion given to her. She devoted her daily existence to Beth, and when Marci was born, to both of them. The layers of challenges, obstacles, successes and emotions that shaped their days were recorded in over 26 years of journal writing. These entries along with contributions from her sister Marci, Aunt Rose, and educators, became a book.

Believing in Beth is an acutely honest account of bringing up a child with special needs, the impact within a family and on a mother who was committed to what she saw as the most important job in her life. This book will educate the reader with regards to the complex medical scope of required surgeries and care, the educational system and vital support services, and the public’s perceptions of a child with special needs. It is a story of darkness and of light, whose pages speak of courage, hope and advocacy. At the core is a faith that gave Edie the strength to stand again, when life drove her to her knees. Above all, this is a story of love.

Believing in Beth is a treasure for all parents, educators, friends, and the vast array of professionals that come into the lives of children and their families. It will generate discussion and heighten compassion. It will inform and expand the understanding that we are blessed by the presence of children who require us to stretch and learn, and see the world differently. It will remind us that within the walls of a home by the sea, a family was dealt the unexpected that left a history and a wisdom that faith, belief and light led them safely home.

With gratitude,

Joan Skinner. M.Ed.

Retired Teacher of the Deaf and Hard of Hearing

Fredericton, NB

Dedication

My special child, I have something to say

Thank-You for choosing me

For I believe in you

Together we walk

Together we talk

We just do it differently

Chapter 1

Unexpected Closure

As I unlock the door, I hear the telephone ringing. I rush through the kitchen without removing my high heels as Earl quietly closes the door against the scent of spring hugging the air. Alarm bells go off in my head as I listen to a lady’s voice disclose the news. Her words are like venom from a scorpion. Immediately, I experience pain and numbness. My world quickly begins to spin out of control. I feel lightheaded. I gasp for breath. I make a mental note to keep breathing.

I begin to feel that now familiar and natural sense of protectiveness surfacing. I reach for it, embracing its potency, and surrender to its full guidance. I hear myself say, You’re telling me Beth is homeless! I don’t believe this. She’s only been living at the special care home for six months, and has just had enough time to settle in and feel comfortable with the staff and residents. She’s just found her place in the pecking order. Do you understand how upsetting it will be for Beth to make another major adjustment like this so soon? Tell me—Why is this happening? Why are they closing? Where will she live? Earl is now standing by my side.

Well, in cases like this we rely heavily on the family to find an alternate living arrangement. Unfortunately, we don’t have anything available, acknowledged her social worker.

I don’t want to believe this is happening. I ponder the consequences of the closure of the home and how this will affect the residents, their families, and the staff. I know first-hand how few openings are available for individuals requiring a higher level of care. When initially looking for a placement for Beth, we received a real eye-opener. The whole process is an education in itself. Who would think there is so much to consider when searching for a special care home; things such as quality of care, medical provision, location, visitation, smoking, pets, stairs, same gender, mixed gender, worker to staff ratio, age, etc. etc…

Like all other individuals considered vulnerable, Beth is deserving of a voice, so on her behalf we advocate to ensure that she is well cared for and happy. We are comfortable and confident in this role as we know Beth better than anyone. We also share the belief that having Beth return to live at our home could be detrimental to her well-being. The time is now—the time is right! If we prolong this transition, she’ll be so set in the ways of her life at home—the only way she has ever known—that adjusting to any transition would be devastating. Her anxiety level would go through the roof. She would engage in severe self-injurious behavior; repetitive head banging that, if severe enough, could lead to brain injury.

We feel if parents and adult children grow old together, they deprive each other the opportunity to live freely, unencumbered by dependence. It’s human nature to strive for independence from the time we are born, whether we are the child waiting to become an adult or an adult waiting for their child to leave the nest and spread his/her wings.

Those in charge of the special care home where she lives would like her removed within 30 days. Thirty days! That inflicts an enormous amount of pressure on the Department of Health and Community Services, and on us to find a suitable location and make the transition, especially when there are no openings at any other facility. The beds are all full! As time unfolds, our stress levels will escalate… our anxiety will mount… and our concern for Beth will increase…AGAIN!

With all of this unfolding, I begin to reflect back on our journey…

§§§

Chapter 2

Heartbeats - 1987

Are you sure you’re talking about my baby? I asked the doctor, thinking there must be some mistake.

Yes, Elizabeth McGrath, she said with a solemn look from the chair that was positioned beside my hospital bed.

Your baby has been diagnosed with Congenital Rubella Syndrome (CRS). We first noticed the cataracts on her eyes, and a couple of red spots on her body, so we did some further testing. She appears to be blind. She also didn’t respond to the hearing test—she may be deaf, but we’ll try another test later. We detect one hole in her heart, maybe two, so she’ll need to see a cardiologist. Her heart is enlarged, along with her liver and spleen. She may never walk, and may be mentally challenged. I have contacted an eye specialist at the Izaak Walton Killam (IWK) Hospital in Halifax and an appointment will be set up as soon as possible to remove her cataracts. I will give you that information before you leave the hospital. The doctor rose and left the room...I was alone.

I struggled to breathe. I could feel my chest tightening. I felt a sense of panic engulf me. I felt like I was going to die. I needed to escape, from her words, from this room, from the pain. My whole body hurt. The lump in my throat seemed to have taken up a permanent residence. I tried to rationalize why this was happening. I took good care of myself during my pregnancy; I exercised and ate well, I did everything I was supposed to do. My ultrasound didn’t indicate anything unusual. I thought about what could have happened to cause this.

Maybe something happened when I fainted while giving blood during my sixth month of pregnancy? Maybe the pinched sciatic nerve, which put me on bed rest, somehow affected the baby. I wanted to stay in denial. I was unable to rationalize what the doctor told me.

Keeping perfectly still seemed to ease the pain a little. I tried to telephone Earl, but there was no answer. Maybe the baby was undernourished. No, that doesn’t make sense as she would feed from me. What could have caused this? Did the doctor tell me and I didn’t hear her? I didn’t think so, but I suppose it was possible. Maybe I just didn’t understand. She said Beth had a syndrome, but what did she call it? I couldn’t think. All I could remember were the things that were of grave concern.

Nausea during my pregnancy was extreme. People kept telling me it would stop by the end of my first trimester. Three months turned into four which turned into five, and to everyone’s surprise I was still throwing up at nine months. I began to focus on childbirth, a time when I would feel better. To me being pregnant was like having the flu. Eat breakfast—throw up, eat lunch—throw up; the cycle continued. I didn’t gain any weight during the first seven months of my pregnancy. The only time I didn’t vomit was when I kept perfectly still for approximately fifteen minutes after a meal.

In my seventh month, the doctor ordered me on bed rest because I had a pinched sciatic nerve. I wasn’t able to walk. I remember insisting that I would be fine and encouraging Earl to go to work. By mid-day I felt the urge and slid out of bed to begin the challenging task of crawling my way to the bathroom. I was halfway to the bedroom door when I realized my efforts were hopeless. As the pain intensified, a sense of panic consumed me; the bed became my focus. I crawled my way back and managed to pull myself over the side. I waited three hours until Earl got home. That was the first time I acknowledged I needed help. After that, Earl carried me from room to room as the need necessitated.

When I went on bed rest at 31 weeks, I had only gained 1.4 kg (3 lbs.) during my pregnancy. The remaining nine weeks allowed me to gain another 4.1 kg (9 lbs.)—a total of 5.5 kg (12 lbs.). Although the last two months moved at a snail’s pace, March finally arrived.

On March 10, 1987, we welcomed our firstborn child into the world and the anticipation of that new experience had us both excited and nervous. It was a day to remember. Labor was induced after 12 hours. Shortly thereafter everything was quiet, and everyone had left the room including Earl, who had gone for a drink. They didn’t expect the labor to progress quickly.

What they didn’t foresee was that the medication in the IV would stop Beth’s heartbeat—within seconds, there was panic all around. Beepers were going off, nurses returned on the run, everyone grabbing a part of my body and lifting and turning me while someone was ordered to stop the IV.

A nurse instructed me to take deep breaths and stay calm because it would be better for the baby if I were relaxed. I was rolled onto my right side, dictated by the baby’s heartbeat, which resumed after they altered my body to that position. I laid perfectly still, concentrating on my breathing. For the baby’s sake, I knew I had to stay calm; I couldn’t become emotional. I squeezed my eyes shut and felt teardrops trickle from the corners as I focused on my labor. I was nervous and becoming frantic, and it took all my willpower to suppress my anxiety, lowering my heart rate. My heart wanted to beat fast enough for both of us.

The contractions were getting stronger, but the fetal heart monitor showed the baby was in distress. The doctor took a blood sample from the top of the baby’s head and rushed it to the lab for analysis. The results were back promptly, indicating a low oxygen level—the baby was in trouble.

I was told to stop pushing, no matter how strong the urge. Everyone was moving at high speed again as they began to wheel me to the operating room. A nurse quickly placed a Johnny shirt in Earl’s hands and told him to slip it on and follow as I was rushed in for a cesarean section. Later, the nurse told us the umbilical cord was wrapped around Beth’s neck twice, which sometimes happens when the baby is tiny. That’s what stopped her from proceeding down the birth canal.

The doctor announced our new baby girl. The nurse wrapped her in a blanket and began approaching us. It was one of those moments I have frozen in time. Earl graciously stood up so the nurse could hold the baby closer to me. I looked at our small miracle and felt so completely and joyfully blessed. As my eyes misted over with tears of happiness, I could only stare at Beth, thinking how small and delicate she looked, but at the same time anxious for the moment I could hold her. I’m glad we chose the name Beth as somehow it suited her. I was lost in admiration, oblivious to what was happening around me.

When I looked up at Earl to share in that special moment, I realized he was as white as a ghost, and the nurses were at his side. Apparently he glanced over the screen of solid green cloth spanning my chest and accidentally observed me on the inside. They assisted him from the room and quickly found him a chair where he could sit and put his head between his legs.

A few minutes later, we met in the recovery room where I was sick one last time before they brought Beth to us. As proud new parents, we were enchanted by Beth and elated beyond words. We found her fascinating, watching her every move and admiring her tiny features. We couldn’t get enough; she immediately captured our hearts, and instantaneously a special bond developed that only exists between a parent and a child, and we knew that our lives would never be the same. What we didn’t realize was just how much our lives would change.

§§§

Chapter 3

Just Breathe — 1987

Alone in the hospital room, a mere 20 hours after giving birth, the doctor’s words played over and over in my mind, like an endless recording. I could feel myself sinking into a bottomless pit, engulfed by darkness and desolation, plagued with torment, sorrow and pain. A ringing noise slowly brought me back to reality. It was the telephone. I answered very weakly, coming to the realization that it was my friend, Sharon McDonough. She knew instantly by the sound of my voice that something was wrong.

She asked if I was okay and I said, Yes. Then she asked if the baby was okay. Immediately, I could feel myself sinking back into that dark hole again. I fought for control as I struggled to speak. With a voice that sounded foreign to my own ears, I said, No, Beth’s not okay. She might be deaf and blind and she has one hole in her heart, maybe two. She may also be mentally challenged and never walk. She needs to go to the IWK Hospital.

When I finished blurting that out, there was dead silence for a few seconds. Then in a low and steady voice, she asked if Earl was there with me and I said, No. She asked if there was anything she could do, so I asked her to call Earl and tell him to come to the hospital right away. I needed him.

We live in West Quaco, which is located near the small coastal village of St. Martins, New Brunswick on the Bay of Fundy, so I knew the trip would take at least forty-five minutes. I picked up the book about rubella that the nurse had placed on my bedside table. I started to read, but the letters were just words on the page.

It was too soon; too overwhelming. I couldn’t concentrate on anything.

I lay back on my pillow…thinking…remembering the time when we decided to start a family. We were so excited, we could hardly wait, but after six months of disappointment, our excitement grew to concern. Our family doctor suggested we return to him in another six months if things remained the same and he would refer me to a gynecologist. Over the next couple of years, I endured many tests and surgeries. The gynecologist sat us down and told us the odds of getting pregnant were very low and if it hadn’t happened, it may never happen. He suggested we consider adoption. That was not a decision we had to ponder as we were both confident that we could easily love someone else’s child as much as our own. We decided to apply right away as we were told the waiting list was approximately seven years.

Our decision generated paperwork. One question on the forms asked if we would consider a child with special needs. I completed all the other questions without hesitation, and then returned to the question that caused me uncertainty. As I sat at the kitchen table with pen in hand, my thoughts drifted through the silence of the room back to my childhood, recalling my encounters with anyone with special needs.

There was one boy in particular. I remember his mannerisms and that he didn’t use language. He allowed his mannerisms to speak for him, and that made me feel out of my comfort zone. I began to analyze my thoughts and behavior when in his presence. I immediately experienced that same feeling I did years ago when he came near me—I was scared—I was very scared. Asking myself why, pushed me to think even deeper. I realized he frightened me because I felt he could overpower me. I didn’t know what to say or how to act, so I did everything I could to put distance between us. The realization hit me that I was unexposed, inexperienced, and uneducated of his needs, his world. I was only thirteen years old at the time, unsophisticated and frightened because he was different.

After much deliberation, feeling more reluctant than confident, I followed my instincts and the next day I gingerly placed a check mark in the box no. I thought about that question for a long time after mailing the adoption papers. It was a haunting sensation, inflicting a sense of guilt which put me in conflict with myself and I was periodically revisited by this sensation. It wasn’t that I didn’t think I could love the child—I knew I could; I questioned whether I had a strong enough character to raise the child and do the child justice. It would take a special kind of person to fill that role and I believed that God did not make me strong enough.

Now, four years after placing that checkmark, I have an infant afflicted with the many challenges associated with CRS—challenges that appeared bigger than life itself. With those thoughts I turned to my faith. God knows best! I believe everything happens for a reason and I believe it was God’s will. But I questioned why.

The confirmation of CRS was not finalized until they ruled out toxoplasmosis infection, caused by a parasite that can be found in the feces of infected cats. If handled by a pregnant woman, this can cause deformities in the developing fetus. I was unaware that this could happen. Prior to the doctor’s confirmation of Beth’s diagnosis, a nurse asked me if I cared for a cat while I was pregnant. I informed her that I did not have a cat nor did I handle one while pregnant.

At this point Earl appeared at my hospital bed, bringing me back from my thoughts. I was grateful to Sharon for relaying the message. He walked hastily across the hospital room towards my bed. When our eyes met, he sensed something was terribly wrong. He immediately sat in the chair beside my bed and in a low, soft voice asked what was wrong. After explaining the concerns expressed by the doctor, he joined me in a state of disbelief and shock. The look in his eyes, the expression on his face, and the gentleness of his voice revealed his depth of concern. We sat quietly for a long time, holding hands, nurturing our shared grief. There was an unspoken understanding that we needed to move forward for Beth’s sake. We needed to not let the darkness overshadow the light; that would be crucial for the survival of our family.

With Earl in the hospital room,