Forever Baby: Jenny’s Story - A Mother’s Diary. Mary Burbidge

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СКАЧАТЬ 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

       Part One — Looking back to ‘Before’

      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.

      Jo went to bassoon and badminton. Ant went to basketball. Jen went to bed.

      Jen was well-behaved, an exemplary child, all day.

      In between times I got Jen up, fed, toileted, dressed, fed, toileted, walked, undressed, swimmed, showered, dressed, fed and bedded.

      It’s such a shame that the bulk of my diary entries are devoted to things that annoyed, excited or upset me, and to how I reacted to these things; that so little space is given to the beautiful, the simple, the warm and joyous interactions of daily living. I sometimes noticed this tendency as I was writing.

      Three pages for Anthony. One СКАЧАТЬ