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

they gave it away.

      Jen may have discovered cause and effect, a way to make things happen. She pulls up the flap on the skimmer box and stops the flow of water so the pump sucks in air, then she lets go of the flap so water gushes and gurgles in and she laughs. Then she moves across the pool to the inlet holes in time for the sucked-in air to come bubbling noisily out and she holds her hand in the turbulence and laughs again. Lovely to see, but not good for the pump, I fear.

      Jen was doing lots of different things in the pool today – feeling the inlet water, sitting on the step, chasing Happy Apple, pulling flippers in off the edge, hanging on to the edge and stretching out horizontally, putting her ear under the water to listen to the spa jet bubbles. She was having a lovely time but is getting a cold and has a sore eye.

      In 1993 my term at the Guardianship and Administration Board ended, and it was a great shock to me when I was not reappointed.

      Big April fool. I haven’t felt this miserable since Meredith died. And it’s not that bad. I haven’t lost my daughter; I’ve only lost my job. One of my jobs. The one I like best, and all the people I love there. They’ll all say how sorry they are and what a bad thing it is, but the Guardianship Board will go on and they’ll forget me. And that makes me miserable. At least I had Andrew, Joey and Jenny to comfort me as I sobbed and blubbered.

      Poor Mrs Mac rang to say she won’t be able to come anymore because her sight is failing and she’s been told she must retire. I was able to offer some wry consolation, ‘Well, I’ve just got the sack, so I probably couldn’t afford you anymore either.’

      I didn’t stay low for long though. There were plenty of other things I could do with my time. Like bird-watching.

      Jen and I went tree planting with the Bird Observers Club at the You Yangs. The You Yangs is no place for a wheelchair so I set Jen up in the Tarago with the back seats down and her toys and music and Twisties while we did the tree planting. She joined us for a picnic by the roadside, but the wind was pretty cold and strong. The group of about twenty planted nearly 500 little trees.

      And writing. For years I’d had dreams of becoming a writer. Now I had a computer and spare time, so I got stuck into it.

      Another piece finished. I’m whipping up quite a folio. My diary’s looking a bit thin though and as for quality time with my beloved family . . . Today’s piece was on having a disabled child, a general ramble with an attempt to make a point at the end. I have things to say but no real reason for saying them. Ah, well, it fills in the hours and keeps me off the streets.

      Hee, hee! Whee! Alan Attwood rang! He’s interested in ‘Curly Questions’, the piece 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