Tangled Webs

By Barbara M. Robinson

Bringing up a child is a time-consuming but rewarding task for any parent. But what is it like for the parent of a child with disabilities? What then?

Anxious and concerned parents, conscientious or dismissive caregivers, arrogant or caring do-gooders, insensitive or dedicated professionals, all come together to form Tangled Webs through which the journey of a child with disabilities and her family is portrayed. This is the story of the dedication of the people who supported Sharon, who was born with Down Syndrome. She matures despite all headaches, problems, and doomsayers, to become independent from her family. It is a story of triumph in a world of adversity.

Tangled Webs has a message for everyone in today's society; parents, educators, social workers and medical care providers; anyone who has contact with people with disabilities.

• Language: English
• Publisher: Lulu.com
• Release date: Feb 8, 2016
• ISBN: 9781329890213

Book preview

Tangled Webs

Tangled Webs

by

Barbara M. Robinson

Copyright

Copyright © 2016 by Barbara M. Robinson

All rights reserved. No part of this publication may be reproduced in any form without the prior written consent of the publisher, except by a reviewer who may quote brief passages in a review.

First Printing 2016

ISBN: 978-1-329-89021-3

Published by Barbara M. Robinson and Lulu.

Jean Vanier quotation used with permission

Cover photo by Joan Draper

Acknowledgements & Dedication

I am indebted to the following friends, guides and supporters who all helped to make this memoir possible.

To my husband Brian, for editorial, design, production assistance, and encouragement throughout this project; to Professor Dianne MacPhee of Acadia University English Department, my patient mentor who taught me how to write my story; to Joan Draper, my longtime friend, for proofreading and verifying facts; and to the late Sheila Morrison who helped to edit the first draft of the manuscript.

For all those who have

loved Sharon

and people like her.

I … believe that those we most often exclude from the normal life of society, people with disabilities, have profound lessons to teach us. When we do include them, they add richly to our lives and add immensely to our world.

- Jean Vanier

Prologue

Erika tore into the house and ran past me to where Sharon, a happy one year old, was propped up with her ever-present cushions on the kitchen floor, playing with pot lids. Enveloping Sharon in her arms she said, over and over, I won’t let them kill you, I won’t let them kill you.

I was stunned, and knelt to embrace them both. Startled, Sharon seemed none the worse for the attention. I gradually eased Sharon out of our hug and held Erika close. What’s going on? I asked.

She told me a child in her Grade One class said babies like her sister ought to be killed at birth. Erika wasn’t stupid; she knew what the other girl meant. As best I could, I comforted her, and told her I would speak to her classmate’s mother. We talked about how much we loved Sharon, her sweet nature, and how we had always to protect Sharon from unkind people, and protect ourselves, too. Erika was quick to grasp what I meant and has always been a tenacious and loving advocate for her sister and for all people who are disadvantaged in and by our society.

Later I went to the other child’s home to speak with her mother, whom I had known for several years as an acquaintance and whose daughter sometimes played at our house. She answered my knock but didn’t ask me into her home. I explained what had happened, and what her daughter said to Erika. She looked steadily at me and replied, It isn’t my problem; it’s yours. She shut the door in my face.

Birth

It drizzled in Toronto the day before Sharon Elizabeth was born. After nineteen hours of thinking about entering the world outside her cozy environment, I guess she decided not to wait for sunshine and fanfare and just arrived headfirst into the doctor’s hands at three am.

I wanted to hold her immediately after she was born and cleaned up, but she was placed in an isolette to keep her warm. The doctor went to a corner of the delivery room and talked to a neonatologist, a specialist in newborns. The nurse disappeared, leaving me within arm’s reach of the bassinet where my baby lay sleeping wrapped in a pink blanket after her great effort of birth. I reached out to pull her close to me. Years earlier I worked as a nurse in a newborn nursery when, from time to time, we had a child with Down syndrome in our unit. Sharon had that look.

About nine months earlier, I’d heard Jean Vanier. He spoke, as he always does, about love for one another, about embracing those who have disabilities, about sharing all we have with those less fortunate, and about opening up his life to be with people who have mental challenges. The worldwide L’Arche network of communities for people with mental disabilities is the direct result of his philosophy. I remembered that speech.

I waited for the doctor to give me the news. When he approached, he looked drawn but not just from lack of sleep. He sounded solemn, I don’t want to alarm you, but .... He paused. Finally he looked right at me.

Yes, I know, I said.

Well, I’m almost ninety per cent sure, he said, quietly.

It’s alright, I told him.

Do you want to tell your husband, or shall I? he asked.

Perhaps you could say something, I said. He left.

* * *

Eventually I was taken to my room. Michael, my husband, stayed for a short time, then went home without saying much. Perhaps he was just tired; perhaps he was in shock.

The skies were still crying for us, but I had no tears. I was numb. It was the fourteenth of November 1974 and still dark outside. I lay in the darkness, unable to sleep. Later a breakfast tray appeared and though I had scarcely eaten the previous day, I didn’t feel hungry. I ate because I needed my strength to be a good nursing mother.

About nine in the morning there was a commotion in the hallway. Newborns were being delivered to their mothers for feeding. I waited patiently for my baby. Nothing happened.

Soon my older daughter’s pediatrician walked in. I’d seen him the day previously when I took Erika to be examined for a stubborn chest condition that wouldn’t go away. Dr. Farber looked at me with eyes so sympathetic and sad I almost cried at the forlorn sight of him. He reached out to touch me and said, I’ve just examined her. I asked if she had a heart condition, so common in infants with her genetic mix-up. I don’t think so, he said. I couldn’t hear anything abnormal. I was relieved. She would be okay. Every day I was in hospital after Sharon’s birth, this caring physician paid me a visit. My obstetrician didn’t visit every day, though, and once just stuck his head through the door to tell me he’d be in the following morning. He always seemed busy, with other places to go. I received no support from him and a few months later left his practice.

However, my talks with Dr. Farber were sometimes wide-ranging, generally about children like Sharon. He’d sit by my bed, put his feet on the bed rail, and stay for a while. One day I asked him if it got easier over the years to tell parents about their children – the ones born with abnormalities. He looked at me with sorrow, a darkness in his voice. No, it doesn’t. It gets worse each time.

We often talked as if he had nowhere else to go and no one else to see. This wonderful man always made me feel that way. Our almost five year association when Erika was an only child, had shown me how kind and considerate he was, firm, yet gentle, while brooking no nonsense. My older daughter was a croupy baby and he knew us very well.

That first day, after Dr. Farber left, I waited a few minutes, then rang for the nurse. I told her I’d like to see my baby. The nurse was curt. This was not the time for babies to be out of the nursery. I would have to wait until feeding time. I said I wanted to hold my child. She said she would see what she could do and disappeared. I waited and waited, but nothing happened. The lunch tray arrived. A bowl of soup, a package of crackers, a pot of hot water, a tea bag, a cup. I wasn’t impressed but devoured everything, my appetite finally kicking in.

At last, about one in the afternoon, the baby was brought in, along with a bottle of formula. I told the nurse I was going to breast feed my baby and had stated that fact quite clearly in the delivery room. There should be a note on my chart. She looked at me and made her pronouncement: It was impossible to nurse one of those babies and that was that. I insisted she take back the formula. I levelled my gaze at her and told her if the baby could suck a rubber nipple, she could suck the nipple nature provided for her. Again she told me that no one could nurse a baby like that. I pulled rank and said, When I was in charge of a newborn nursery in Montreal, a baby like this one was nursed by his mother. Why are you so unwilling to help me to do the same? She turned without speaking and walked out, leaving the bottle.

I smiled at the small child lying in my arms. It’s okay, kiddo; it’s you and me against them. Guess who’s going to win.

* * *

I’d loved this child from the day I was certain she was actually growing inside of me. Going home from the doctor’s office when I got the news I was pregnant, I must have looked like the Mona Lisa riding the subway, because when the man sitting opposite rose from his seat to get off, he turned to me and said, You sure look happy. I was way beyond happy; I was ecstatic!

I loved you

when you were the unformed child of my mind.

Now

I cover you

with the warm darkness of my body –

your heartbeat

a counterpoint to my being.

I wrap you

in the myths and legends and all the stories

our mothers told to us.

You bind me

to my sister Eve squatting in the dust

birthing the human race.

I held my daughter close for a couple of minutes, and then told her, Time to get busy. It took only a couple of tries before she latched on to what I had to offer. My usually flat chest was poking out in all the right places; I could almost qualify as a Playboy centerfold with such magnificent boobs. When one of my friends came to visit a couple of days later, she blurted, Barbara, I’m so impressed. We had a good laugh at how much I had blossomed after Sharon’s birth.

Every day we were in that hospital at least one of the non-chatty folks from the nursery told me outright or hinted broadly that those babies were difficult to feed. Even though I asked that she be brought to me only when she was awake and hungry, on demand, never once was Sharon brought except at nine, one, five, or nine o’clock. After I had to express milk because I had so much, I discovered the nurses were using my milk to bottle feed the baby. I thought they were perverse and unprofessional. When Sharon developed newborn jaundice and had treatments under the lamp, we were delayed in leaving. Our quiet battle lasted all week. We would have been a happier pair at home.

Balancing the lack of support from the nursing staff, something wonderful happened a couple of days after Sharon’s birth. One dull day, into my room came Myrna, the mother of my godson and Erika’s godmother. She and her husband, Gordon, an Anglican priest, had farmed out their children and driven from Montreal through a snow and sleet storm on icy roads as the Provincial Police closed the main highway behind them due to intolerable conditions. Several years earlier their first son had been born with Down syndrome. We didn’t know what to do, Myrna said, so we just got into the car and came. She enveloped me in her arms and we hugged and cried together. That brief visit sustained me for a long time. Instinctively Myrna and Gordon gave me the very thing I needed – warm personal contact with people who cared about us.

I sit braced in my hospital bed

with my knees drawn up –

You lie sleeping between my thighs.

I suckled you in the middle of the night

And the nurse has forgotten to collect you

to take you to your hard cold cot

in the nursery.

And so

I loosen the blanket that binds you tight.

And then

I stare at you

Long and hard.

And then

I fold one little arm over the other

where it used to be.

And then

I fold one little leg over the other

where it used to be.

And then

I cover you with my warm hands.

Two nights ago you were folded up inside of me.

But then

I didn’t know you –

didn’t know you were so beautiful.

The clincher for my hospital experience was the discharge nurse who watched me dressing Sharon and said as I tied the satin ribbons on my baby’s wee bonnet, You know, it could have been worse. She could have been born blind. I held my tongue. I couldn’t believe someone so insensitive was actually licensed as a nurse.

I was glad to get home. In two weeks’ time, my older daughter, Erika, would turn five years old. When I asked her if she’d like to hold her sister, she carefully arranged herself in the rocking chair and opened her arms to receive our precious bundle.

She’s so small, she said. Then she looked at me as I crouched by the chair.

Oh, she said, she’s so beautiful. And so she is.

* * *

Months later, at an Infant Stimulation group meeting that went overtime, I moved away from the other women in case any took offense at my breast-feeding. I was sitting quietly on the floor, with Sharon doing her favourite thing, when one of the other mothers stormed across the room.

You’re nursing her! she stated.

I started to apologize for nursing in front of her. No, no, she said, flushed with anger, they told me I couldn’t breast feed a baby like that, even though I wanted to so badly.

Her child had been born with the same condition as Sharon’s, two months later at the same very large downtown hospital. I put Sharon down, then stood to embrace the woman. I told her I was a nurse who had fought the nursery staff to do what I was doing. She wept in my arms.

I was angry on her behalf and then realized I was angry about my own experience – my introduction to some less than helpful, so-called professionals entering my life, creating tangled webs which challenged our family.

The Blues

No one could have asked for a more agreeable little bundle than my brand new daughter. She slept peacefully, was an excellent nurser, gained weight as she was supposed to do, never had diarrhea or a rash, made neat baby gurgling noises when I bathed her in the big sink, learned to smile in the most charming way, had silky soft skin, and smelled wonderfully fresh. She was what anyone would call a good baby.

So why did I weep buckets? I’d be washing dishes and suddenly start to blubber. I’d be immersed in an amusing book and sob as if the blameless, happy heroine had just been given a death sentence. The crying just happened.

It was easy for me to rationalize and to intellectualize about Sharon’s condition, less easy to accept it emotionally. I wondered, "What does one small child mean in all of this? What difference does one person make? Is this some sort of surrealist dream? We’re here just passing through, passing by, stopping off a while. Why can’t everyone see that? Why