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

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СКАЧАТЬ there, set up with her toys and music boxes and her new Christmas auto-reverse tape player which she can operate herself by keeping her hand on the switch-plate.

      Rather than staying home with Jen, I took her to work – mattress, sleeping bag, sheepskin, wheelchair, spare clothes, nappies, toys and lunch. I looked like a travelling circus lugging it all up in the lift, but it worked alright. I bedded her down in the vast unused area and there she stayed, snoozing peacefully, fitting fitfully, and sitting up for a drink and a sandwich at lunchtime. She seemed a little better this evening, having a happy swim and eating some tea.

      In 1988 Andrew and I joined Servas, an international travel organisation, and since then we’ve had visitors from overseas staying for a few days from time to time. Sometimes they had more involvement with Jenny than they bargained for.

      A busy day. Karsten, a young German Servas traveller who’d rung a day or so ago, rang at 7.30 am to say he’d just arrived on the overnight bus from Adelaide and could he come straight out? Sure thing! So he arrived just after 8.00, as Andrew was walking out the door and I was having a shower after getting Jen onto the school bus. He had a hearty breakfast and a chat while I battled with Ant about repairs to his bike and with Jo about whether she’d hang out the washing. I lost both battles and helped repair the bike and hung out all the washing, with my poor little fingers and toes nearly freezing. Karsten soon set out to see the sights of Melbourne.

      Anthony did some gardening and mowing at Urimbirra but came home in time to meet Jen’s bus at 4.00. I’d asked him to stay with her until I came home, but found he’d left for basketball soon after Karsten arrived back, leaving Jen in his care. He’s a fifth year medical student with plans to specialise in neurology but I don’t know if his interest extends to baby-sitting brain-damaged sixteen-year-olds without being asked. After tea by an open fire, Karsten taught us a complicated new card game.

      When I worked at the Guardianship and Administration Board (GAB), I sometimes had to do country Hearings for several days at a time. Occasionally, in school holidays, Jen and I would go together for a motel adventure.

      I had time to give Jen attention between cases, and after lunch with the social worker in the canteen we went for a walk in the beautiful botanical gardens. Ballarat is a very hilly place when you start pushing a wheelchair around it and they have strange conceptions of what constitutes a ramp. We went to MacDonald’s for sundaes after tea. It’s lucky we didn’t want to eat there. The door leads into the ordering area but all the eating areas are up or down steps. I stood there, feeding our faces with sundaes, wondering when some thoughtful young staff member would bring me a stool. One lass came by with something but it turned out to be a long-handled brush and shovel doover. I lunged at her, snatched the doover and sat on it anyway, just to show them. No I didn’t.

      Jen appears to enjoy spending the day with me. Parties at Hearings are a little bemused at having her there, chuckling and rattling, but she causes no problem. In the car she pulls impatiently at my shoulder if she thinks I’m not sharing the junk food fairly. Tonight she walked down the steep ramp into the motel unit, pushed the wheelchair across the room until she could reach the table, walked round the table twice then manoeuvred herself so she could reach the bed and leaned on it until I helped her up. She thought she was so clever.

      Pacing up and down an impersonal room, looking out barred windows at empty wet gardens, talking to myself for want of something better to do, waiting for the staff to bring my lunch tray. You pretty soon get the feel of what it’s like to be in an Institution. I’ve only been here half a day and already I feel depersonalised. And I’ve got stimulating work to do, an entourage of interesting visitors, a warm heater, a coffee machine (no cups), comfy chairs, unlocked doors and Jenny for company. What must it be like, day after day with a locked door, a cold room, no activities, no visitors, no loved-one? Day after day, year after year.

      Lunch has arrived. Too horrible to contemplate. Two identical trays of chunderous stew, boiled spuds, boiled pumpkin, boiled cabbage and grated carrot mix, and a dessert of jam tart doused in institutional custard. No salt and pepper. Good of them to provide lunch for Jen as well, isn’t it? A stale plastic-cheese sandwich is looking good, eh Jen? Jen closed her eyes and chomped stolidly on whatever I shovelled in. You’d do well in Lakeside, Jen, if you were mad. We got rid of some of one main course and both desserts. I’ve always been a sucker for institutional custard complete with yellow plastic mack.

      Church was one of Jen’s favourite places. The furniture, acoustics and company appealed to her. Amateur musical shows were usually fun too.

      Jen is a fair devil in church – forcing me to blow in her ear then gurgling with sexy laughter, making lightning lunges at hymn books and bibles, waddling along the pew and plonking herself on my knee for cuddles and giggles, clapping, banging, sneezing, hair-pulling – the highlight of her week. She seemed to be experimenting with her voice at one stage, making eeee and aaah sounds and listening to them and laughing.

      Jenny, Joey, Meredith and I drove to Mansfield in the super comfort of Geraldine’s Magna, with a button or a knob to meet every conceivable need. Andrew decided that he wouldn’t come. He missed a great show. The Marvellous Mansfield show is a revue written and directed by the Marvellous Jeannie McDonagh (and five others). Jim was the only McDonagh actually in the cast, although Bill, as a member of the back stage crew was almost part of the cast because it was a production about a production. Jen and I were down the front. Jen clapped and jigged and pulled my hair and generally enjoyed herself.

      Towards the end of the service Jenny was standing up facing the back and walked herself along, around the end of the pew into the seat behind and sat down next to Beth. Hello, I thought, now she’ll start attacking Beth. But she didn’t. She just sat there. She must know me, to be selective in her attacks. How nice.

      Jenny always enjoyed her birthday celebrations, although for us they were rather poignant.

      Jenny’s Sixteenth birthday, but apart from the clothes I’d made her there were no presents in the morning. Everyone forgot and I didn’t press them. She doesn’t understand enough to feel hurt or rejected and there’s not a lot she needs, but it’s a bit sad. (In fact I’ve just burst into tears for my sixteen-year-old baby, now officially an adult on her very own pension, playing with her rattles and music boxes in the middle of the night.)

      After school Nanny brought the traditional birthday sponge up and we had a little afternoon tea party. Jenny enjoyed the singing and the candles and the saveloys, lollies, chocolates, Cheetos and birthday cake. No-one needed much tea tonight. Anthony was home late but did bring a nice chocolate cake he’d made at school for Jen. That was kind.

      Jenny’s 19th birthday. She had a happy day, enjoying cakes and attention and people singing to her. We took the annual photo of her not looking at the lighted birthday candles. Same photo every year. They only serve to emphasise that nothing much changes for Jen, except her size.

      Finding toys suitable for Jenny was often problematic, but Noah’s Ark Toy Library was a great resource.

      I wandered down Swanston Street looking for birthday presents for Jenny. I passed a pet shop and thought some durable doggie toys might be just the thing. There was this huge hideous hairy squeaky plastic spider. $22 would you believe? And it wasn’t even tough plastic. Any decent dog could chomp it to pieces in half an hour. Dog owners must be mad! There were bits of thick plaited rope with a knot in each end, made from recycled threads from kapok mattress covers, for doggie to chew on. $20. And similar bits of rope with a plastic handle at one end so you and doggie can have a jolly old tug-of-war tussle $32. Unbelievable. So I moved on to the Body Shop and bought some environmentally-sound soaps in the shape of endangered species and a nice wooden back massager for her to chew on, and some Darrell-Lea lollies. What a lucky girl.

      Ant, Jen (who СКАЧАТЬ