Forever Baby: Jenny’s Story - A Mother’s Diary

A reader might expect that speech in quotation marks is a direct quote of what was said, a faithful recording of the speaker’s words. Not at all. If I record an exchange as direct speech, it is because I choose to write it in that style. But what I set down is my perception and recollection of the gist of what was said, a paraphrasing of what I understood the message to be. It can be no more. I do not carry a tape recorder. And I may well have misunderstood.

I labour this point because, in letting my diary become a book, I have exposed not only myself, and my family, but many other people. This book is full of people, real people, the people who move in and out of our lives every day, as major or minor characters, guest stars or walk-on extras, in the play in which we take the lead role. And these people might feel I have misrepresented them, might say it was not like that, they didn’t say that, or mean that. They might feel shocked or hurt by how I felt about them. I want people to understand and accept, that their perception of what was really happening, their truth, is valid, as mine is valid. There are many truths in every moment.

Things have been changed; some things had to change. Some names, some places. Some people did not want their story told in my story, and sometimes I decided it would be better to leave things out, things that were unnecessary and could have been hurtful. But nothing has been added. It is impossible to recapture a moment from the past, uninfluenced by what has happened since, and a diary entry has no knowledge of the future. I want, as far as is possible, for this book to be a reproduction of my diary as I wrote it, not knowing each day what the next would bring. In being true to this, I feel I can be true to Jenny.

Names

There are many names in this book, real names or false names of real people, real places and real organizations. Some readers will know and recognize some of the people and places, whether the names have been changed or not, but for most readers this is a story, like any other, of characters interacting, and this is all that matters. The names are simply the names of characters in a story.

Because this is a true story, and part of a much longer true story, there are no neat beginnings or endings. Characters are not introduced for a purpose, then neatly tidied away. They are there because they were there, doing what they did on that day. They may or may not return. Their names may not matter. This is very messy and can be confusing. My advice to readers is that they just read on without bothering too much about sorting out who is whom. The people who were important in this story keep appearing and you will get to know them. All the others are “part of life’s rich pageant”.

However, some people have been in the story for years before this part began and deserve introduction as continuing core characters. They are listed at the end of the book, along with organisations and acronyms.

Introduction (#ulink_efc5f7bd-76ca-54fd-812d-3dfabb3fe935)

In early 1995 our household was a busy one, a group of people leading busy lives.

I was doing three part-time jobs. I’d worked in a medical clinic as a GP for many years and was doing this for three sessions each week. After finishing at the Guardianship and Administration Board in 1994, I was appointed to the Social Security Appeals Tribunal and worked there once a fortnight. And for six months I had been working at Melbourne University for two days a week as part of the Developmental Disability Unit. I also went to meetings.

Andrew was working as a senior research fellow at an Australian Research Institute and was involved with sailing, musical and community activities, and going to meetings.

Joanna (Joey, Jo), our younger daughter, was 18 and had just started doing Journalism at RMIT. She was enjoying her friends and socializing more than she was enjoying her course. She was leading a full life.

Jim, my nephew, was boarding with us while he studied Town Planning at Melbourne University and explored life. He was not as happy as he might have been, but I failed to notice.

Annabel, a friend of Joey’s from country NSW, was boarding with us while she studied Dance at the Melbourne College of the Arts. Recurrent back trouble was threatening her dream of becoming a dancer.

And Jenny, our older daughter, was nearly twenty-one. She was going to Yarraville Special Developmental School each day and being cared for by Julie or other Council Home Help workers when no-one else was home. She liked company, attention, food, music and swimming in the heated pool we’d had built for her three years earlier.

A story I wrote about Jenny was published in the Melbourne ‘Age’ in 1994. I include it here to show Jenny’s special place in our lives and our hearts.

My daughter, my forever baby

I have a darling baby. A patient placid baby who nuzzles warmly into her sheepskin and gives me a sleepy smile when I come in. She sits up, bounces happily and reaches out for a cuddle. I lift her out of bed, and, with both hands held, she walks unsteadily to the bathroom to have her nappy changed.

She’s at a delightful stage, liking to help with dressing and undressing, wanting to hold the spoon but making an awful mess, moving along the furniture and pulling down whatever she can reach. She loves music – songs and rhymes sung to her, banging on the piano, clapping and finger games, and her never-ending, pull-the-string music boxes. She enjoys being taken for walks on sunny days, snatching heads off flowers as we pass, and she would splash and laugh forever in a warm bath or pool.

I’ve had my darling baby for nearly twenty years now, and unless something happens, I guess I’ll have her for another twenty years. She’s been at the lovely seven-to-nine-month stage for a long time, so I don’t expect much change.

She still has a sweet baby face, innocent, unmarred by loss or disappointment or anger, and she still has her mass of blonde curls. But her hormones are those of a young woman – a plump, buxom, almost voluptuous young woman – and acne spoils her pretty face. Her hair, though darker now, is still her finest feature. How often I’ve had cause to be thankful for those lovely curls! People are usually uncomfortable, stuck for something to say, on first meeting my big baby, but they can always say, “What beautiful hair!” And they do. It helps.

Others I know have a much harder lot with their “forever” babies. Endless years with a fretful, crying child, every mealtime a turmoil of spitting resistance, all activity a cause of spasms and distress. Or a child with full mobility but never learning to heed “no” or “stop”, on the go all day every day, getting bigger and stronger with every year, being influenced by powerful adolescent hormones. And without the redeeming beautiful curls.

We met at a special playgroup, a group of young mothers coming to terms with the realisation that our children were severely disabled. We talked through our guilt, our grief and disappointment, our anger, as we helped our children to play, and we’ve kept in touch. Caring for a severely handicapped child is a big task, as is caring for a baby, but when supports are available it is not all-consuming.

We have had other children and been active in their lives, we’ve had part-time jobs while the children are in day-care, our marriages have survived and we’ve had family holidays.

And we’ve become involved in “the field”, working to ensure that the best possible services and supports are available for our children, and for other disabled people and their carers. School councils, accommodation committees, fund-raising and fetes, lobbying politicians, demonstrations and protests, and self-education – we’ve done it all, learning as we go.

As our children reach nominal adulthood, there are further decisions to be made, battles to be won. We need to be sure that there are suitable day activities available for them when the school system is no longer an option, and that appropriate long-term accommodation will be provided when the time is right for them to leave our care.

For the most part, I’ve found people sensitive and helpful. Services and supports have been available when I have needed them, and the years have rolled by pretty smoothly.

But there have been jolts and hurts along the way. There was the ideologically-pure occupational therapist who removed my daughter’s toys and music-box from her wheel-chair because they were “age-inappropriate”. (I responded by tying a book, a chess set and a rock music tape to her tray, and she banged and chewed them into oblivion.) Or the brutally honest doctor at the children’s who said when I rushed her to casualty with croup, “I can admit her if you like, but she’d be better off at home. Children like that don’t get the best treatment here.” And the bastard who publicly queried my use of a disabled parking sticker.

Dilemmas arise in the decisions I need to make on my daughter’s behalf. As she reached puberty, I was offered, and accepted with misgivings, a hormone injection to stop her having periods. I think I secretly hoped it would stop her body from maturing, that I would be able to pretend forever that she was still a child. But it didn’t, and after a year or so I stopped the injections.

“Why should she wear a bra?” I wondered, until physical size provided an obvious answer. “What clothes should she wear?” I tend to dress her for her comfort and my convenience, but is this undermining her dignity as a young adult, denigrating her worth as a person? Should I dress her in the sort of things her sister wears; make an outlandish fashion statement on her behalf? What would she choose for herself if she could choose, and does it matter since she has no concept of fashion or dignity? (These are issues one is made uncomfortably aware of, when working in the broader disability field.)

In deciding to seek an operation to stop her menstruating, was I motivated by her best interests or mine? (The Guardianship and Administration Board accepted that it would be in her best interests. Such important decisions are not made by carers alone.)

In years past, children such as ours would very likely have been placed in institutions at an early age. Parents of babies with much lesser disabilities were often advised not to take them home. “Put her in a home and forget you ever had her,” they were told. And many did.

Recently I spent some time at a large institution, holding meetings with disabled people, their parents and their carers, and I observed a most amazing phenomenon. The residents were in their thirties and had lived in the institution for more than twenty years. The staff were in daily contact with them and met all their physical needs. The parents visited from time to time. Yet, repeatedly, I was struck by the strength and durability of the emotional bond they had with their parents. They couldn’t get close enough, couldn’t take their eyes off them, couldn’t bear for their parent’s attention to be anywhere but on them. An ungainly, non-verbal woman manoeuvred laboriously along the table and sat on her father’s knee, pressing her face to his. I felt so sad that these people had not been offered the encouragement and supports to keep their child at home for longer, to make the most of the love that was so obviously shared.

These days, fewer disabled children are born. Preventive immunisation, genetic counselling and improved obstetric care have contributed to this. Special tests in early pregnancy can identify many malformations or abnormalities, and parents can choose to have the pregnancy terminated. While very few people would choose to bring a severely disabled child into the world if they could avoid it, the implications of this newly-acquired capacity to engineer a largely disability-free society need to be examined.

What message does it give to the disabled members of our community about their worth, their right to exist and be supported? Will society refuse support for those families who knowingly give birth to a child with a disability? Will even minor defects be eliminated, until only perfection is tolerated? And what will this mean for those whose disabilities or deformities could not be predicted, or are acquired after birth?

A friend of mine recently had tests early in her pregnancy, because in her first pregnancy the baby had been found to have a severe foetal defect necessitating termination, and there was a chance this could recur. She was told these tests showed a different problem, Down syndrome, and that arrangements had been made for her to have a termination two days later. She was offered no counselling about what having a child with Down syndrome would mean, or what factors she would need to consider in making her decision. It was not even appreciated that she had a decision to make! In fact, it was a very difficult decision for her and only after a lot of heartbreak did she accept that she really could not manage a disabled child in her situation. The attitude to disability shown by her doctors is a little disturbing.

So, what am I saying in all this? There will always be children born with disabilities. And if it happens to you, it’s not the end of the world – for you or your baby. No one can predict with certainty what path any child’s development will follow. Or what sort of life he/she will be able to lead.

It will not be the life you dreamt about when you were expecting your baby, but it is his/her life. Having a disabled child makes you think about life: what it’s for and what’s important. And your ideas change quite a lot. Your life won’t be the one you were dreaming about either, but it will be a full life, a rich life. And it could have a lot of joy.

Unfortunately, tragically, something did happen, and I no longer have the baby I thought was mine forever.

What I do have is her story, the story of her life ending, and mine going on without her. For reasons I find hard to understand, and even harder to explain or justify, I want that story, Jenny’s story, to be told.

Introduction to second edition

I decided to self-publish a second edition of Forever Baby as people still wanted to buy it, but not enough people for Pan Macmillan to be willing to reprint it. I wanted Jenny’s story ‘out there’ still, for anyone who wanted to read it.

I have taken the opportunity to include the pictures that some people asked for and, in working again from the original diary text, I have chosen to include some passages that were edited out of the first edition. More of my idiosyncrasies in spelling, grammar and expression remain.

For better or for worse, this edition is more ‘mine’.

Part One (#ulink_f628216b-2331-5709-a7f5-a6c29be3b71e)

Part One — Looking back to ‘Before’ (#ulink_f628216b-2331-5709-a7f5-a6c29be3b71e)

I had my first daughter, in the small local hospital where the previous year I had been the first Resident Medical Officer. It was a gala occasion – flowers everywhere. I had worked up until I was admitted and induced with pre-eclampsia at 39 weeks, and had a forceps delivery 36 hours later. Everything seemed fine – a short cord, a slightly distorted head, a bit slow to feed, but fine. Then, on the second day, she had a fit while I was feeding her. I remember saying, ”Got some brain damage have you darling? Well, there’s nothing we can do about that.” And then I pulled down the curtain of denial. It seems impossible, but for the next four weeks I operated as a happy new mum with a gorgeous new baby, breast feeding and bonding, not acknowledging the fits which were becoming more frequent.

There was a day or two of uneasiness, then I asked a friend, “Did your babies do this?” “No, they didn’t,” she said, alarm in her voice. Reality broke through. Within hours she was in the Childrens Hospital and I was a devastated mess. No cause was found for the fitting and she was sent home on medication. Over the next month or so, it became clear that my gorgeous baby was a very slow, very floppy baby, and by 8 months she was also a lop-sided baby, and cerebral palsy with right hemiplegia was diagnosed.

No cause was ever found for her disabilities. (These days a CT scan may have shown something.) Finding a cause doesn’t necessarily alter outcomes in any way, but it helps the parents. There are so many things to feel guilty about, so many “if only”s, when you’re not sure why something terrible happened, and no way of knowing how to stop it happening next time. As well as guilt about things I may have done or not done, which caused Jenny’s brain damage, I have had to live with the guilt caused by those four weeks of denial. Could everything have been fixed if I’d acted on that first fit? How much worse did four weeks of uncontrolled fitting make her problems? I’ll never know. I do know that, whatever damage it may or may not have done, those four weeks of relating to a normal baby, of bonding closely with her, were very important in enabling me to get through the years ahead.

Looking back, I am dismayed and chastened to find so little of Jenny in the diaries I’ve kept since the beginning of 1990.