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 — 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 line for Jo, one line for Andrew and nothing at all for Jen. How come I say so much more about the bad things than the good things in my life? Would long descriptions of calm, pleasant, intelligent, friendly interchanges be unutterably boring? Are they boring in the living or just in the re-telling? ‘And they all lived happily ever after’ suggests that I’m not alone in concentrating on the turbulent, negative aspects of life for the bulk of the story.
Have I mentioned Jen? Do I have to mention Jen every day? They said she was no trouble on the bus today. She never is.
It is a shame, and sad, but it is understandable – one major purpose my diary serves is to let me let off steam, so at the end of a hard day, after several pages of ranting angrily, I feel calm and am able to finish more gently.
I made Anthony cook the tea while I soothed myself playing hymns on the flute and playing with Jenny. Dear Jen, she never makes anyone cross, and will always give you a laugh and a cuddle and make you feel better.
However with twenty-three volumes, covering over five years, to look back on, all those little entries add up to a full picture of my Jenny as she lived her special life in our family.
Jenny was part of all sorts of activities, at home, at school and out in the community.
Jen and I went swimming with Geraldine, then bird watching at Cherry Lake. Then everyone came home, seven loads of washing were hung out, or brought in, or folded, or dried in the dryer, and we all went to Nanny’s for tea.
Nanny and Jenny came to Joey’s school concert with us. Jen was a bit of a pain: if she wasn’t kicking the man in front she was pulling and biting my hair and struggling to get her leg free so she could kick the man in front. It makes concentration difficult and I was glad when she fell asleep. Nanny behaved herself perfectly. Poor Joey was coughing a lot while on stage.
Geraldine picked Jenny and I up for the Peace Rally at 4.30. The numbers were pretty disappointing–I’d say only half as many as last week and Mr and Mrs Average were conspicuous by their absence. At least we could hear the speeches this time and they were quite good. As we straggled along St Kilda Road towards the U.S. Consulate I played old peace songs on my flute while Geraldine pushed Jenny.
Geraldine, Jen and I went swimming at Altona. Because of work bans, entrance money wasn’t being collected and all facilities could be used. Geraldine is a strong exponent of the joys and beneficial effects of saunas, so we hoisted Jen out of the pool at the deep end and walked her into the sauna. I don’t know what Jen though of it, but I find them stifling and uncomfortable (and also rather embarrassingly silly – sitting round in your bathers, doing nothing but make small-talk with a bunch of half-naked sweaty strangers) so