Changed by a Child : Companion Notes for Parents of a Child With a Disability

Book by Barbara Gill

I lay looking out the window from my bed in the maternity ward of a Minneapolis hospital on a Monday morning in the last week in March.  The sky was leaden and the ground was covered with dirty snow.  The dead, gray scene reflected my deep despair.  Just the day before I had been told that my new-born son, Amar, my first child, most likely had Down syndrome.  On Sunday I had felt numb disbelief.  But today I knew that it was true.  I see myself, as if in a movie, going home, carrying the baby.  I walk up the steps and in through the front door, which closes behind me.  And there the film stops, with the picture of a brown house and its blue door.  I cannot see what life is like inside the house or what I will do when--if--I come out again.  Like a thwarted, hurt child saying, "I won't play" or "I won't eat," I thought, "I'll never practice law again"; "I'll never give another dinner party."  I thought, "I don't want to belong to the world of the retarded."

My husband, Harjinder, and I were each thirty-two years old and in excellent health.  I had had a normal pregnancy, doing all the right things--good diet, exercise, vitamins, check-ups, rest.  No one in our family had ever had a baby with any kind of birth defect.  The lecture at childbirth-preparation class about something being wrong with the baby had been for someone else.  We were completely devastated by what had happened.

Our lifeline was Amar himself.  He was healthy and beautiful, as satisfying to hold as any baby, the sugar sack of weight fitting so naturally in the crook of my arm, the sweet-smelling, fuzzy head, the utter vulnerability of the pulse rising and falling in the fontanel.  And of course he was as helpless and demanding as any baby, needing to be fed, bathed, changed, held.  Most important, he was ours.

In the first days after learning the news about Amar, Harjinder had been more rageful than I, more insistent that there was a mistake.  Our last day in the hospital he asked the pediatrician, one scientist to another, what the odds were that the chromosome tests would confirm that Amar had Down syndrome.  Eighty percent, came the answer.  After the doctor left, Harjinder sat on the edge of my bed and held my hand.  Tears shone in his eyes as he looked into mine and said, "I guess Amar will be our boy forever."  I knew then that we were at the same place.  Amar was not the baby we had expected, but he was ours.  Whatever journey lay before us we would make together.
New Baby

Take the baby home.  Feed him, love him, care for him.
--Pediatrician, telling a mother her newborn has Down syndrome

In the space of a sentence our whole world can turn upside down and inside out.  We learn that our baby has a disability, and suddenly we are uncertain about everything we think, feel, and do.  This includes our sense of self as well as how to take care of our baby.

We learn that our baby is different and we think we have to treat him differently.  Or at best we are confused about when to treat him differently and when to treat him as we would any baby.  "He sleeps a lot.  Is this due to the disability?"  "Should I wake him up to feed him?"  "They said to keep her stimulated.  Should I do these exercises with her every day?"  "I don't know anything about spina bifida.  I'd better get to the library right away and read everything I can!"

The task of new babies and new parents is to recover from the excitement and trauma of birth.  To eat and sleep.  To fall in love with each other.  This remains true whether the baby has a disability or not.  Our shock and grief and any of the baby's urgent health problems are realities we can't avoid, but they don't change the basic tasks.  They make them even more necessary.  There will be plenty of time to learn about our child's particular problem, to do the extra and different things this baby needs, to engage in the "business" of parenting a child with a disability.  Right now we do what parents do with a new baby: love him, feed him, care for him.  Rest.
Accident

I have a six-foot three-year-old.
--Pete, whose son Nick sustained a severe head injury in a skiing accident at seventeen

Those of us whose children were born with disabilities had to give up our fantasy of a perfect baby.  Those of us whose children become disabled owing to accident, illness, or progressive disease have to give up and grieve for a very real child.  The bubbly toddler who now cannot speak.  The bright girl who will never go to college.  The handsome boy whose face bears a livid scar.  The ordinary kid whose chances at a regular life are now compromised.

Everything was fine, great.  We could see her growing up into the person she was going to be.  We allowed ourselves to dream of her musical career, of his wedding day.  We waved goodbye as he headed out the door--on his way to the ski trip, the hiking expedition, the dance.  We didn't know we were waving goodbye to life as we knew it, to life as he knew it.

Today I will allow myself to remember and grieve for what was, to feel and know our loss.
Fault

Condemnation heals no one.
--L. Tobin

Many of us feel guilty and somehow responsible for our child's disability.  One of the first things a mother thinks on learning that her newborn has a disability is "Was it something I did?"  She begins to review her pregnancy, searching for incidents that might explain what has happened.  For many parents, maybe most, it was not something they did or didn't do that determined their child's being disabled.

Others of us are haunted by a mistake or accident we feel we could have prevented.  Perhaps a medication we took during pregnancy seriously affected the fetus, or we turned away for a moment and our child was hurt.

All parents make mistakes.  Most of the time we escape devastating consequences.  This time we didn't.  We must forgive ourselves, knowing we coped the best we could at the time and that life will go on.  We cannot go back and change the past.  Constantly reviewing it, asking what if, and blaming ourselves or another punishes us in a way we do not deserve.  It contributes nothing to our well-being today or to the well-being of our child and our family.

Today, I will remember that the most useful thing I can do is to live this day the best I can.
Dreams

That's how we deprive our children, when we take away their dreams.  The viciousness of this whole thing is that handicapped children are not allowed to dream.  See, they're just as disadvantaged as minority children.  You're not allowed to dream big dreams.  Just let 'em dream big dreams--that's all the freedom they need.
--Rift Fournier, whose legs were paralyzed by polio when he was seventeen

As expressions of our wants and deepest desires, dreams shape our picture of the future and fuel our will to live.  Nightmares, on the other hand, embody our fears and undercut our hopes.  When we follow our nightmares, we limit, even turn away from, our lives.  But sometimes our dreams can frighten us more than our nightmares, for when we envision and imagine something more, our choices--and our responsibility for action--expand.  As Nelson Mandela said, "Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure."

It is important to acknowledge and name our fears, wily creatures that will go underground and sabotage us if we don't call them out and confront them.  But first and last it is vital that we dream, for ourselves, for our family, for our child.  We need to dream and teach our child to dream, remembering that to deny dreams is to disable the spirit.

Our power is in our dreams.  Let me dream boldly, and let me raise a child who is a bold dreamer.
Excerpted from Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill.  Copyright (c) 1997 by Barbara Gill.  Excerpted by permission of Doubleday, a division of the Bantam Doubleday Dell Publishing Group, Inc.  All rights reserved.  No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
From the Hardcover edition.