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

she’d had lunch I left her sitting on the two-seater chair and went outside for a while. When I came back she was sitting on a kitchen chair, half-way down the kitchen, happily throwing everything off the bench onto the floor. She must have moved along pushing the kitchen chair somehow. Tricky!

      Jen came with me for the day. Walking (me, not her) to work and shopping and home, driving to the airport and home. I walked her up the stairs at work, an exhausting and somewhat alarming process. Then she slept all morning as if she’d done all the hard yakka. Might as well have stayed in bed. Walking her up stairs is heavy and difficult, but walking her down is much worse as she won’t bend her knee to lower herself. So I bounced her down on her well-padded fat bottom. Easier, and no risk of a tumble.

      Getting ready for the bus in the mornings and being there to meet it in the afternoons was one of the banes of my life. Punctuality is not one of my best features. I did try, and they were forgiving.

      The morning routine went with the precision of a well-choreographed ballet, with each participant gliding from bedroom to bathroom to bedroom to kitchen to bathroom to front door, pirouetting nimbly to avoid the other participants, all in the correct sequence, all perfectly timed, except the bloody bus arrived three minutes early and started tooting rudely, ruining the whole effect. Probably to punish me for keeping them waiting yesterday afternoon. I apologised.

      It always gave me a thrill to see Jenny showing initiative or asserting her independence in some small thing, although we jokingly chided her as ‘naughty’.

      I sat Jen on the big toilet a couple of times today and she promptly did wee and then stood up, leaning on the bath. Apparently there’s a bar at school, so she can stand up by herself when she’s finished (or before, if she’s feeling mischievous) and she’s decided to do the same thing at home. It’s nice to see her showing some autonomy.

      Katrina was minding Jen today and had her out and about most of the day—to the library and visiting people. Apparently she, Andrew and Jo combined had the devil of a job getting her out of the bath. Jen wasn’t co-operating because she hadn’t been in long enough for her liking. Naughty girl. She was naughty when eating her tea too, insisting on doing it her way instead of the nice way she does it at school. She knows where she can get away with what.

      Jen was in a happy mood when I got home, reaching out for a cuddle, giggling and gurgling, then she practically frog-marched Julie into the bathroom. I wonder if she’d heard and recognised the sound of the bath running.

      Jen almost ran the length of the piano when I held up a peanut butter sandwich. Never have I seen such purposive movement, with a hungry gleam in her eye.

      Jenny pulled all the photos off the photo board again, and ripped up Joey. She giggled uproariously when I sang ‘One, two, Buckle my Shoe’ at bed time.

      Jenny and I had a long swim. She’s beginning to interact with me more when I’m in the pool. She’s also getting quite skilled in moving her wheelchair round. Not in getting to a particular chosen destination, but in getting going and keeping going in spite of running into things. Because she only pushes the wheel with her left hand she goes in wobbly circles, but now she pushes off from walls and obstacles with her foot, to change direction.

      The other side of school was my involvement on School Council.

      Home to bath Jen, fold the washing, cook tea and talk to Jo. Andrew and Ant weren’t home yet when we girls had tea. Then, quick, quick, Jen into bed, I’m late for the YSDS school council meeting again. It was an hilarious meeting. We spent ages rocking with laughter and wiping the tears from our eyes. Two new people—Athalie, the new Vice-Principal, and the father of a new student—must have wondered what on earth they’d struck, although they both contributed to wise-cracks and teasing. It was Brenda who caused so much laughter. She’s the chairperson, but also the chief offender for getting side-tracked into involved personal anecdotes, so it’s very hard to get the meeting moving again. Tonight it was mainly about her dog dying and all the drama that followed. There were doggie and pet cemetery references on and off all evening. ‘Perhaps we could hire a big bus and take all the parents down to the pet cemetery as a fund raising effort.’

      School holidays, and unexpected days off, were often a problem. Usually I made arrangements for someone to mind Jenny while I was at work, but sometimes I took her along with me. She was so patient and undemanding that this was almost easy.

      Andrew was sick in bed again, so he looked after Jenny–also still in bed mostly– while I went to work. Very convenient for me, but she’s comfortable 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