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

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СКАЧАТЬ on Jenny, on having a disabled child. What he wants me to think about is whether I’d allow a photo of Jen and I, in a warm interaction, to be published with the article. ‘Oooh, I dunno!’ I have to get back to him. Andrew and Jo read the piece. Jo didn’t comment and I don’t think Andrew was too impressed. Alan said he liked the emotion in it; there’s not enough emotion in newspapers. What about the deep message for society, I wondered.

      The photographer came at midday. He took about 100 shots, but would Jen lift her head, smile and open her eyes simultaneously? No, she would not! Alan rang later to say there were some beautiful shots and the one he’d like to use is delightful. Tomorrow will tell. Yes, tomorrow. Running it in a big way, he says. Oh, my goodness! I rang Nan in Alice Springs and told her to try to get a Melbourne Age.

      Fame! Full ‘Features’ page. The photo is lovely too – Jenny in focus, me blurred. I prefer my title to his – ‘My daughter — my forever baby’ – but apart from that, jolly good show.

      Exciting mail at last. An unexpected delight. Steve and Shaaron Biddulph want to include my ‘outstanding’ article about Jenny in their next book More Secrets of Happy Children and are prepared to pay for the ‘honour’. Howzat!

      I even joined a writing group.

      Jen and I spent the weekend doing Writers Group workshops at the Baillieu Library. I’ve now been to three different writers’ things with Jen, with three different groups of would-be writers. Almost without exception they ignore her completely, step over her without seeing her – she is ‘not there’ to them. It’s been interesting to observe. Perhaps I cue them to do so. Perhaps not. Perhaps I would do the same under similar circumstances – we’re all taught as children that it’s rude to stare and ask intrusive questions. They’re no different to other people I suppose. I just thought they might be, with their enquiring, writerly minds, ever open to new phenomena. I don’t mind having her there though – I know she’s contented and comfortable and she gives me something to do during the breaks rather than hovering on the fringes. I don’t think I find my fringehovering role any more pronounced because I’m the mad woman with the freak in the corner. And whether she was with me or left at home, I should have felt compelled to hurry straight home afterwards, rather than join the enticing long intellectual exploration of feminism in the pub. Try to join.

      I wasn’t under-employed for long though. I successfully applied for a part-time position on the Social Security Appeals Tribunal (SSAT), and not long after I started there, something really new and excitingly different came up.

      The lunchtime lecture at Western General Hospital is on Medicine and the Media, given by a chap who writes a weekly medical column for the Age and does a whole lot of other things. He laments each day having only a pathetic 24 hours allotted to it. But, he said, when a football (like an offer to write a weekly column) lands in your lap, it’s good to run with it, give it a couple of bounces and have a shot for goal. Yes, but when’s a football going to land in my lap, I thought.

      Then, when Jen’s on the toilet, ring, ring, a football. Nick Lennox, head of the Developmental Disability Unit (DDU) of the Department of Public Health and Community Medicine at the University of Melbourne, offering me a four-tenths position there – teaching, clinical work and research. Judith Hammond is dropping back to six-tenths and my name keeps cropping up (via Philip Graves, from GAB, perhaps) as someone with experience, skills and the interest which might make me a suitable replacement. Think about it and let him know.

      Think about it! Four tenths. How many tenths are there in a week? And how many do I want to work? And teaching!?. Research?! Even clinically, do I really know any more about the medical care and problems of the intellectually disabled than any other GP? Think about it? Well, I’m thinking. And plotting and scheming. If I only do one session per fortnight with the SSAT, that’s only one-tenth on that job. And my Wednesday session at the Clinic is really only to keep my level of clinical work up to the required level. They don’t really need me. I suppose the clinical work at the Unit would count just as well. So that’s two tenths on that job. Which leaves seven tenths to play with. Netball might have to go, and Group could go, at a pinch. Ah, possibilities, problems, perspectives, panic. No wonder I’ve got a tummy ache, getting whammed by a football like that. I played the flute – Radetsky, Humoresque, Bolero. That made me feel productive and creative. Jo played them too, to show she’s still better than me, or to feel productive and creative.

      Nick Lennox rang again. He was happy enough with my interview, but he said Prof Peach would like me to revise my CV before he’s prepared to appoint me. More on academic qualifications and relevant experience, less Bird Observers and Labor Party. I’ll see what I can do.

      I was appointed, and in due course I had to tackle teaching.

      Fifth year teaching day. Done. Over. Survived.

      My talk was on being the mother of an intellectually disabled child, so it had some personally harrowing stuff in it – but I got through with only minor choked pauses. And that was the major worry. I stodgily read most of it, but various bits I’d scribbled in the margins I presented free-hand, and it’s a much better way as far as contact with the audience goes. Maybe, in time, I’ll get there.

      Soon after starting the DDU job I took off on a bird watching jaunt to Africa which I’d booked months before. Jenny stayed at home with daily support from Western Support Services (WSS). There was a mountain of planning and preparation for the trip. But I did see flamingoes.

      Jen’s not having fun. She’s getting used to a new handler who makes her feel insecure. Sally, the WSS worker who’s going to be on the roster while I’m away, came tonight to get some hands-on practice with Jenny and I realised how much of what I do with Jen is dependent on her being made aware of what is expected of her by cues so subtle I don’t know I’m giving them. When a novice is told just do this or just do that, it doesn’t work. I have to stop and consider what it is I’m actually doing and spell it out step by step. Sally was here for over an hour and I keep remembering things I didn’t tell her. Still, people muddle through, Jen adjusts and adapts. Sally’s a strong competent, confident lass; I’m sure she’ll manage.

      It was very windy. Very very windy, all night and all day. I spent a restless night, noticing the wind, and worrying and wondering. Do I really want to go tripping off to the other side of the world for a whole month with who knows what horrid things happening at home while I’m away, and how would they contact me, and what if something happens to me and what if this and what if that, as the wind rattled ominously in the roof and shook the windows.

      There comes a time on these trips. You decide to go, and there’s months of planning and preparation and anxiety, and you wonder if you’re doing the right thing and what will go wrong, and the time comes and there’s hours of waiting in sterile airport, queues, officials, long long passageways, unending night as you fly west, west, west, airport food, and you wonder why you’re doing this, and you drive through Harare and it’s dry and brown and poor and depressing, and the van is stuffy, the leader racist, the company indifferent, and you think you made a terrible mistake, then as you wind along a dusty, shrubby track the magic comes. Your companions start leaping around in the van like a mob of excited schoolboys driving in to Disneyland as bird after amazing new bird is sighted to left and right. The camp has little oval huts with thatched roofs and trees and cool drinks and you think, ‘Yes! This is the life!’ and you stop fussing about the people at home and start enjoying the birds and the people and the country. There comes a time of magical freedom and rapture.

      I’m looking forward to getting home now – to see everyone and be in my own place with my own bed and toilet and talk with my own people. Other people are all very well, just too sweet and gorgeous, but they’re not your own people, are they? It was good to talk to Andrew and Jo this morning and hear that all was well. Jo has СКАЧАТЬ