Forever Baby: Jenny’s Story - A Mother’s Diary

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 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 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 tepid for her by late afternoon.

An Easter camp at Tamboon Inlet had its moments.

Jen disgraced herself. She’s bleeding heavily (a real treat when camping) and I noticed when she got up she was a touch pooey. So I gave her a suppository – fool – and it finally worked just in time to have brekkie and go to the local little church. And in church she did the rest. What a mess! I tell you, if I was losing steam on this GAB hearing for Jen, this holiday will really rev me up. It’s in her interests to have holidays with her loving family, but she won’t be coming again if I have to face that sort of clean-up. Let them argue with that.

Once we all gathered on the banks of the Glenelg River in a National Park camp-site. Andrew brought his boat to increase the scope for adventures. It was a great holiday.

I’ve borrowed a light-weight wheelchair with big back wheels from the school for the holidays, hoping it will make camping and bush walking easier.

We packed a picnic and all went along to the next landing for lunch – in four canoes and the boat. We even loaded Jenny and the wheelchair on the boat. Getting her in and out went quite well with four strong lifters. She sat on the edge and kept standing up against the cabin. A family with five little kids had come for a quiet BBQ and fishing outing at Saunder’s Landing and along we come – eleven kids in canoes followed by a boat with five adults (one sitting on the roof playing the flute and singing loudly), then out of the boat they produce a wheelchair and a heffalump. They were very good about it though and gave us some burning logs from their fire.

Occasionally, Jenny had a ‘holiday’ from us.

I’m thinking about Jenny going to Curlew Avenue, the new adult respite CRU (Community residential unit) for a couple of nights during the week of the school play. I’ve got something on nearly every night that week and there’ll be a lot of running round with Jo. It would be an opportunity to see how Jen fits in there, with the staff and the equipment, and to iron out any problems so that if I do book her in for a longer period sometime when I go on a trip (Bird-watching in New Guinea? Ballooning over the Serengeti rift valley? Who knows? Someday) I’ll know she’s going to be OK. I don’t know. I’ll talk it over with Andrew.

I rang Curlew Avenue and booked Jen in for two nights the week after next. They seemed fairly casual and easy about it and everyone’s been reassuring me that it’s a reasonable thing to do and not ‘the thin edge of the wedge’. Sue pointed out that Jo often goes away for a few nights and I don’t feel bad about that, so why shouldn’t Jen have a change of scene too?

Jen goes to Curlew Avenue tomorrow, direct from school, so I packed her case tonight –an enormous case full of clothes for two nights. I put ‘J’ on some of them but I do hate labelling clothes –it’s almost enough to deter me from going on holidays, the thought of all that bloody labelling.

It’s funny without Jen here. An unwarranted alertness remains. Julie said she was OK when she called in.

It was nice to have Jen home again. Lots of warm hugs and kisses.

Jenny always needed everything done for her, in terms of personal care.