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

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 had spent the morning snoozing on the floor of the meeting room) and I then went out to Noah’s Ark to return long-overdue toys and select new ones. It was good having them there. Ant made his own choices and Jenny was able to try things and I could see if they appealed to her, rather than my usual guessing or choosing tried and true favourites again.

      I gave Jenny a new music box at bed-time. Teddy Bear’s Picnic has been tinkling on and off all night, and is still going, with gurgling laughter.

      Clothes too, were a challenge. Jenny could wreck new things in a day if she was in a chomping mode.

      Julie had a whole bag of clothes to pass on to me and Jen. I don’t know why people consider me such a repository for discarded clothing. Perhaps because I always look like my clothes came out of a ragbag. Still, thanks very much, we’ll probably wear them, won’t we Jen? You’ll love chewing all the lovingly-knitted bobbles on that pretty pink jumper.

      When she was little Jenny could be carried or pushed in pushers and could ride behind me on the bike. At one stage I had a special trailer made to pull behind the bike when she was too big for the child’s seat. But eventually wheelchairs became her main way of getting around, and the search for the perfect wheelchair was on.

      Jen had an appointment at the Wheelchair Clinic this morning. Her teachers couldn’t come, but the school physiotherapist did. I always feel I’ve been steam-rollered at wheelchair clinic. All the RCH experts have their views on what is needed and their reasons why what I was thinking of won’t do. I’m never quite sure what changes the school is wanting, or why, and I’m not sure what all the options are, so it’s a bit difficult to decide. And when the decision has been made, there’s always the news that the funding has run out for this financial year but there’s a chair down in the equipment centre which might do in the meantime.

      I’ve remembered the other drawback of the big-wheeled chair – the finger-chopping-off action of the spokes. She likes to feel the tyre going round. It’s an accident waiting to happen. A high-speed horror.

      After lunch Jen and I went to Noah’s Ark to change toys and to the Melbourne Wheelchair Centre. I actually bought a wheelchair, just like that. $680 – not so bad when you consider $300 for three days skiing for Jo, or $350 for gas. It’s being delivered on Friday.

      Jen surprised us and the school by acquiring a brand-new, personalised electric wheelchair today. Last thing I remember was signing something for PADP funding and chatting vaguely on the phone to an Occupational Therapist ages ago. I thought no more about it, never expecting PADP to cough up the required scads of moula. It’s an unwieldy monster with the capacity to demolish furniture, fracture ankles and permanently scar doorways. It should make the Walk Against Want easy though.

      They sent home the electric monster for the weekend so I thought I’d take Jenny for a walk to master it. Thoz came too. We went to Mrs Macnab’s (via the Railway gates because I’m not sure if it can negotiate the subway bike barriers), then to the shops, back to Mrs Mac’s with her tablets, then home. Hot, exhausted, aching back, and RSI in the thumb. It’s no breeze. True, you don’t have to push it as such, but you fight it all the way as it swerves and weaves, slamming into fences, threatening to plunge into gutters, meandering off across nature strips or charging ahead with you trailing out behind like a cartoon character.

      Each January, all my side of the family, plus extras, would gather in a cow paddock on the bank of the fledgling Murray River at Biggara, for a camping holiday. Jenny seemed to enjoy camping although it was not always easy for her, or me.

      Jen slept like a log and did a big wee on the potty on waking. I seemed to spend most of the morning doing Jen-related things including a big nappy wash in the river.

      It was a lovely day. Hot and sunburny though. I set Jen up under the fly net with her toys and tapes under a shady willow and Jeannie watched her and read while I went with the others on a trip down the river on tyres.

      The kids and some adults formed a bucket chain to fill Jen’s wading pool from the river. With solar power and a couple of pots of boiling water it was pleasantly