Читать книгу Forever Baby: Jenny’s Story - A Mother’s Diary - Mary Burbidge - Страница 8

I had my first daughter, in the small local hospital where the previous year I had been the first Resident Medical Officer. It was a gala occasion – flowers everywhere. I had worked up until I was admitted and induced with pre-eclampsia at 39 weeks, and had a forceps delivery 36 hours later. Everything seemed fine – a short cord, a slightly distorted head, a bit slow to feed, but fine. Then, on the second day, she had a fit while I was feeding her. I remember saying, ”Got some brain damage have you darling? Well, there’s nothing we can do about that.” And then I pulled down the curtain of denial. It seems impossible, but for the next four weeks I operated as a happy new mum with a gorgeous new baby, breast feeding and bonding, not acknowledging the fits which were becoming more frequent.

There was a day or two of uneasiness, then I asked a friend, “Did your babies do this?” “No, they didn’t,” she said, alarm in her voice. Reality broke through. Within hours she was in the Childrens Hospital and I was a devastated mess. No cause was found for the fitting and she was sent home on medication. Over the next month or so, it became clear that my gorgeous baby was a very slow, very floppy baby, and by 8 months she was also a lop-sided baby, and cerebral palsy with right hemiplegia was diagnosed.

No cause was ever found for her disabilities. (These days a CT scan may have shown something.) Finding a cause doesn’t necessarily alter outcomes in any way, but it helps the parents. There are so many things to feel guilty about, so many “if only”s, when you’re not sure why something terrible happened, and no way of knowing how to stop it happening next time. As well as guilt about things I may have done or not done, which caused Jenny’s brain damage, I have had to live with the guilt caused by those four weeks of denial. Could everything have been fixed if I’d acted on that first fit? How much worse did four weeks of uncontrolled fitting make her problems? I’ll never know. I do know that, whatever damage it may or may not have done, those four weeks of relating to a normal baby, of bonding closely with her, were very important in enabling me to get through the years ahead.

Looking back, I am dismayed and chastened to find so little of Jenny in the diaries I’ve kept since the beginning of 1990.

Jo went to bassoon and badminton. Ant went to basketball. Jen went to bed.

Jen was well-behaved, an exemplary child, all day.

In between times I got Jen up, fed, toileted, dressed, fed, toileted, walked, undressed, swimmed, showered, dressed, fed and bedded.

It’s such a shame that the bulk of my diary entries are devoted to things that annoyed, excited or upset me, and to how I reacted to these things; that so little space is given to the beautiful, the simple, the warm and joyous interactions of daily living. I sometimes noticed this tendency as I was writing.

Three pages for Anthony. One line for Jo, one line for Andrew and nothing at all for Jen. How come I say so much more about the bad things than the good things in my life? Would long descriptions of calm, pleasant, intelligent, friendly interchanges be unutterably boring? Are they boring in the living or just in the re-telling? ‘And they all lived happily ever after’ suggests that I’m not alone in concentrating on the turbulent, negative aspects of life for the bulk of the story.

Have I mentioned Jen? Do I have to mention Jen every day? They said she was no trouble on the bus today. She never is.

It is a shame, and sad, but it is understandable – one major purpose my diary serves is to let me let off steam, so at the end of a hard day, after several pages of ranting angrily, I feel calm and am able to finish more gently.

I made Anthony cook the tea while I soothed myself playing hymns on the flute and playing with Jenny. Dear Jen, she never makes anyone cross, and will always give you a laugh and a cuddle and make you feel better.

However with twenty-three volumes, covering over five years, to look back on, all those little entries add up to a full picture of my Jenny as she lived her special life in our family.

Jenny was part of all sorts of activities, at home, at school and out in the community.

Jen and I went swimming with Geraldine, then bird watching at Cherry Lake. Then everyone came home, seven loads of washing were hung out, or brought in, or folded, or dried in the dryer, and we all went to Nanny’s for tea.

Nanny and Jenny came to Joey’s school concert with us. Jen was a bit of a pain: if she wasn’t kicking the man in front she was pulling and biting my hair and struggling to get her leg free so she could kick the man in front. It makes concentration difficult and I was glad when she fell asleep. Nanny behaved herself perfectly. Poor Joey was coughing a lot while on stage.

Geraldine picked Jenny and I up for the Peace Rally at 4.30. The numbers were pretty disappointing–I’d say only half as many as last week and Mr and Mrs Average were conspicuous by their absence. At least we could hear the speeches this time and they were quite good. As we straggled along St Kilda Road towards the U.S. Consulate I played old peace songs on my flute while Geraldine pushed Jenny.

Geraldine, Jen and I went swimming at Altona. Because of work bans, entrance money wasn’t being collected and all facilities could be used. Geraldine is a strong exponent of the joys and beneficial effects of saunas, so we hoisted Jen out of the pool at the deep end and walked her into the sauna. I don’t know what Jen though of it, but I find them stifling and uncomfortable (and also rather embarrassingly silly – sitting round in your bathers, doing nothing but make small-talk with a bunch of half-naked sweaty strangers) so we didn’t stay long.

Show Day, a perfect day for spending in the garden, digging, planting, mulching, and mowing, while Jen wheeled herself around on the decking, walked along the balustrade, and bounced and snoozed on the trampoline.

Jen, Jo and I did the marketing. Jo bought a short black skirt and a piece of pizza for herself. I bought everything for everyone else. (I’m the Mummy) Jenny touched up bananas and total strangers.

Jen and I had a late lunch at the Pelican Cafe. I love it there – a great setting for a short story. All the customers are characters, cherished and greeted by name, by the loud-voiced Cheryl. She brings me up to date on the medical details of various friends as I eat my herb and mushroom roulade and feed Jen her sausage roll and chips as delicately as I can. Jen and I are characters among characters. Sharing our soup and food. Cuddling and clapping hands. Jen bangs on the table to make the dishes rattle. She lunges at the next table and whips off a plate. She rolls herself across to the counter, pulls down a collection tin labelled ‘Support Joan Briscoe’s Wheelchair’, shakes it and hurls it to the floor with a mighty crash. Don’t you think Joan Briscoe should have a wheelchair, Jen?

She was in fine fettle in Burke’s too, while I was searching urgently for Christmas presents for Georgie and the family in Africa. She’d lunge at the merchandise and I’d lunge at her.

By the time I was carrying four purses and wallets, and trying to manoeuvre the chair between laden tables with one hand, and lunging, snatching and restacking as I went, a shop assistant actually offered to assist. ‘Could I put all those purses on the counter for you until you’re ready to pay for them, dear?’

I rode down to the Commonwealth Reserve at 8.00 am to help set up our Check point for the Community Aid Abroad (CAA) Walk Against Want bike riders, then rode home again. After doing all the usual morning things with Jenny, animals, clothes, food and newspapers, Jen and I strolled back to the Check-point. For the rest of the day I checked (stamped books and said, ‘There’s cool water over there.’) and Jen pushed herself in circles round the park in the big wheeled chair. She was very active, but I kept having to rescue her. She runs into tent walls, rubbish bins, water coolers, people’s legs, or gets stuck on power cords, little sticks or ditches. A couple of times perplexed citizens would start pushing her, looking around anxiously for her owner, when she was way off by herself. She had a lovely time. It was much nicer having the check-point at the Commonwealth Reserve. There was a band playing in the rotunda, lots of activity to watch and dappled sunshine to sit in.

School provided most of her activities and filled most of her days. Yarraville Special Developmental School (YSDS) was a wonderfully stimulating and caring environment where Jenny could improve her skills and enjoy herself.

Jen will be delighted to get back to school tomorrow – the holidays are pretty boring and unstimulating for her.

Jen had a busy day, off to school by 8.00 and lots of special activities for Education Week. I went up to see a sing-along and music therapy demonstration. Jen kept standing up and leaning against me so I sat her on my knee. The teachers rolled around laughing at great big Jenny sitting on my knee having a cuddle. Quite embarrassing.

Jenny had the day off for Parent-Teacher interviews, so I started her increased morning dose of Tegretol and she slept a lot. Her interview was OK but I feel her teacher rather over-rated her skills in her written report. I don’t think ‘understands most things that are said to her’ and ‘fine motor control is very good’ are really accurate assessments. She understands tone of voice and familiar phrases in a context, with cues, rather than understanding actual words. And I don’t really think fiddling with things till screws come loose and pulling out pubic hair are evidence of good fine motor control. They like to write encouraging optimistic reports. She is making progress though, in understanding and motor skills, at a greater rate than she has for years, and her skin has improved since I cut down on her sugar and fat intake.

Jen has a sleep-over at school tomorrow. In the hall are a large case, a huge bag and her camp-bed – all for one night away.

There was a Football day at Jen’s school. I couldn’t find any footy jumpers, but in Ant’s room I found a beaut Bulldogs flag, and the big wind-tunnel kite the Lindsay’s brought us from the USA has long red, white and blue streamers, so I sent her off with those flying from her chair and an order for a hot pie for her lunch.

Jen’s school report was sent home. It’s amazing the things she does there. You’d think they’d get special parental consent for ‘parachute activities’ though! (That reminds me of a protest I visualised once, back in the days when Tom Roper was Minister for Health and Westraid was fighting with him about something. My vision was to parachute Jenny, in her wheelchair, off the top of 555 Collins Street so she drifted slowly by his plush executive suite windows up near the top there, with protest banners flying from the chair.)

Eating was one of the skills her teachers worked hard on – with some success, some of the time.

I took the extra time and trouble to make Jenny put each forkful of food in her mouth herself. That’s what she does at school and Andrew has noticed she spits out less if she puts it in herself, so I really should make more effort to be consistent with promoting her independence.

There are scraps of spaghetti all over the floor from Jenny’s tea and Rusty’s not here to clean it up. I suppose I’ll have to do it myself.

Jenny is eating nicely lately. Taking food nicely off the fork and then giving the fork back to me. A considerable improvement on taking the fork, putting it in the tray, taking the food off it with her hand, mushing it round for a while, putting it in her mouth, taking it out for further mushing, putting it back then throwing the fork on the floor. They must be making a real effort at school and I reap the benefits.

Jenny ate her tea nicely but refused the beans and the banana smoothy. She laughed when I called her a naughty bad girl. Rusty ate the banana smoothy. I ate the beans.

Communicating was another area the school concentrated on. Although she never learned to talk, there are other ways of being understood.

Jenny had a Switch Assessment at the Independent Living Centre. Quite helpful. It’s surprising just how communicative and assertive Jenny is in various ways now, when you specifically examine her behaviour and look for examples. Lisa, her teacher, is very keen to get her using switches for making choices at school.

Julie had further tales of Jen’s cheeky willfulness-turning around and laughing when she didn’t want Julie to get her out of the bath and smacking Julie’s hand when Julie smacked hers to stop her twiddling hair. Perhaps I underestimate Jenny in not interpreting these things quite so strongly as premeditated communications on Jen’s part, as Julie does. The school tends to interpret quite a bit of her behaviour as deliberate and ‘naughty’. Perhaps they’re right. If so, should it be capitalised on? And how? I’d hate to have to implement stringent, repressive or punitive regimes to try to make marginal gains in communication. I like her to be a free spirit, reacting as the mood takes her, but that may be detrimental to her overall long-term development and satisfaction.

Rave on Mary, you lazy, neglectful mother you!

Physiotherapy and exercises were part or the school program. It was always a battle to keep Jenny mobile, especially as she got bigger, and bigger.

I did some flute practice and tidying up and some stretching exercises with Jen.

I put Jenny on the big foam wedge for half an hour or so this afternoon. I put her with her head at the high end. I felt it worked just as well as far as strengthening her back and stretching her hip flexors goes, and it was more comfortable and she was able to use her arms better. She really likes the switch toy I got from Noah’s Ark last week.

Jenny’s lying contraption was sent home for the weekend, so she had a stretch out on that for a while. She’s showing more volition and initiative in things she does lately. If I put her at the piano and turn the bath on she moves right along to the bathroom end and tries to back in through the door, instead of moving to the other end and sitting in the chair as she usually does. I love to see her showing signs of learning and planning.

Jenny had a lazy day with the usual activities. Poor Jen, she mostly has lazy, boring days. She did one amazing thing though. After 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 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.

Before work I had to run Jen up to school because she was busy on the toilet when the bus came. I cut her toenails and fingernails too. Total quality care.

Jo was cheerful in spite of a sore foot and an earache. She was lecturing me about the folly of my grumbling when she wants a new $3 toothbrush from time to time. She points out that she has not even cost me anything for ordinary dental treatment, let alone thousands of dollars for orthodontic treatment. She’s right, you know. I’ll buy her a $5 toothbrush with sparkles. Then again, Jen’s teeth are good too, and I’m not forever forking out for toothbrushes for her.

Although Jenny was basically fairly healthy, there was always something cropping up.

A few days ago Jen’s teachers noticed a small bald patch on her head where she twiddles with her hair. I decided to put a bit of cream on it this afternoon in case an itch was causing the twiddling. I don’t know whether the cream loosened the hair or caused an increase in the twiddling, but by tea time the bald patch was nearly twice as big and very noticeable. We tried tying scarves and bandages around her head and putting a mitten on her hand but she had them off in minutes. I hope she’s not totally bald by morning.

I’m trying various things on Jen’s left hand to distract her from twiddling her hair. Anything that sticks out enough for her to get a hold on with her teeth is soon pulled off, but a strip of Micropore seems to adhere well enough that she can flick and rub at it without completely dislodging it. I don’t know if it distracts her from her hair though. We’ll see.

Jenny had a hair cut today. She was surprisingly good and let me hold her head still for quite a while before she started struggling. I got the front part cut fairly short to see if she stops twiddling it and the back was left longer, for warmth and because she’d had enough by then.

Jen went to school and came home rather snotty. Sure enough she wasn’t interested in the delicious just-like-Nanny-used-to-make Irish stew (which wasn’t very delicious, not like Nanny’s at all really – we can but try) and soon after chucked it all up again in bed. Yucky-pucky. It amazes me how calm and cheerful I remain as I clean everything up. ‘Hopelessness’ is the result of the ‘situation’ and your ‘expectations’ about it. That was the gist of last night’s lecture at the Cairnmillar Institute, and one of the few things I said in ‘Group’ was how having a disabled child really forced you to look at the mass of expectations we have for our children, because if you can’t change the situation and you don’t want to be overwhelmed by hopelessness, then you have to adjust the expectations. Pity I didn’t realise that I should adjust my expectations of Anthony at an early stage. Poor Jo, of course, labours on under the full load of unrealistic parental expectations. She must be pretty, polite, clever, diligent, helpful, fit, friendly etc. It’s remarkable how well she’s bearing up.

Really Jen, you are a trial. I spent much of the day doing loads of washing, devotedly guarding them against rain showers, whisking things in and out, and finishing off all Jen’s bedding in the dryer.

‘There you are Jen. Nice clean bed. No more pissy smell’

Jen goes ‘Whoopy, whoopy.’

Joey goes ‘Mum, Mum!’

Mum goes ‘Stampy-screamy, stampy-screamy.’

Nan goes ‘Gulpy, gulpy.’

Dad goes ‘Fiddle-I-fee.’

So now the room smells of chuck instead of piss. A trial indeed!

A new Education Department doctor rang to say Jenny’s teacher (also new) had complained to her about Jenny’s weight. So they ring me up to see what I’m doing about it. I’ll stop sending any lunch and see how they respond to that, or buy some of those fake plastic sandwiches and biscuits and let her chew on those. ‘Well, she has lost some weight and she is walking much more than she used to, and I’ve got her on a diet of bread and water, and we’re hoping the multi-million dollar pool we’re putting in might help. As for her drowsiness, it’s better than it was, but she still has fits most days so I don’t really think we can drop the dose of Tegretol. Thank you for ringing.’

My goodness, Cognac makes you irritable and aggressive, doesn’t it?

Jen’s been banging her left ear a lot lately, and sure enough, the drum is inflamed. So she’s on Ceclor. It might help. She bangs on her chest a bit too. Should I start her on Pepcidine? I don’t think so.

We had lunch on the deck in the sunshine. Jen had one of her strange outbursts. Rusty attacked Thoz. Jo yelled at Rusty and I joined the fray. Jenny lunged and pulled back savagely on the tablecloth. We hastily counter-pulled from the other end. Jen let go and laughed and we laughed. She lunged and hauled again. A big plate crashed and shattered. The jug teetered and slopped. Food scattered. The dogs moved in. Andrew lightly said she was naughty as he prised the cloth from her fist. Jen started wailing, then roaring and bellowing so furiously that Jeff next door came running into his yard, alarmed and panicky. She pulled savagely at hair and anything within reach, subsided into coughs, sobs and chokes, had a drink of water and was OK again. Baffling. They seem to follow a similar pattern each time - but what triggers them?

Her epilepsy was always a worry as it was hard to control without making her too drowsy.

Jen apparently had one fit at school and was very sleepy and a bit twitchy for most of the day. I’d been cutting down her Tegretol dose recently so she was less drowsy, but I’ve put her back on the usual dose now. I don’t want her to lose the gains she’s been making, through having more fits.

Jenny is practically hyperactive. She was awake banging, laughing and bouncing for most of the night and never stopped moving all day – jiggling, slapping the dashboard, rocking, bashing at hanging toys, laughing, coughing and vocalising. What’s going on? I’m a bit sorry she’s going off the Vigabatrin after such a short trial. She may not (or may) be having fewer fits, but she does seem different.

Jen’s having numerous worrying fits.

Toilet Training was something that the school worked hard on, but we never succeeded in getting Jenny out of nappies. Bowels were mainly a matter that was handled at home. Things could get messy at times.

Jen’s a cheeky twerp. She weed on the carpet while I was getting a dry nappy. Very funny, Jenny!

What a messy day! First off Jen piddles on the carpet. Later she smears shit over herself, her clothes, the toilet, the bath, the wall and the floor – twice. We go for a walk and a bird poops on her shoulder and the wheelchair wheels get liberally coated with sticky dog dung. I get home to find Ant has invited his sister and her little Kelvin out for a swim and Kelvin has dripped chocolate icy-pole far and wide. Within minutes Kelvin has slipped and split his head open on the edge of the pool. Blood pours down his back and makes puddles on the floor. Bloody towels, nappies and washers join the shitty ones in buckets in the laundry. I use the old trick of tying knots in Kelvin’s hair to hold the gaping edges together and whack on a big pressure bandage. We try to give him Panadol and honey in milk and he chucks over his mother and the kitchen floor. More cloths in the laundry. And I keep finding more marks on the floor where Andrew has stomped through the house with green paint on his shoes. If you hear me scream you’ll know Jenny has chucked all over her freshly washed bedding—pillow, doona and all. And Joey spilt water on my bed. But apart from all that it was a beautiful day.

Jenny’s periods didn’t bother her too much, but they were difficult to deal with and limited her freedom and activities at times. Various things were tried, but in the end I decided to apply to the Guardianship Board for consent for Jenny to have an endometrial ablation operation which I hoped would stop her bleeding. It was a long process getting all the information the Board required for making its decision.

Jen is still bleeding on and off, with either a trickle or a flood on most days, and it’s been like that for over a month. Endometrial ablation is the latest thing for menorrhagia and we’ve had a couple of cases before the Guardianship Board where the combined benefits of no periods and no fertility without the trauma of hysterectomy have been seen as desirable. I must say it has a certain appeal. There’s not much dignity in menstrual blood smeared all over your face.

Jen is bleeding again. She only bled lightly for three days in October and I thought things were tolerable, but as I contemplate buckets stuffed with smelly, gory nappies I fill in my charts with renewed vigour.

Jen’s teacher sent home a report she had written about the impact of Jenny’s irregular periods on her school activities. It was detailed and helpful, but to read it, if you didn’t know Jen, you would not realise she has an intellectual disability. Even her inability to learn to manage her own periods was attributed to her physical disability and lack of manual dexterity. Strange. Is it taken as given, so obvious as to not need mentioning, or is there a denial of her intellectual disability as a factor in her lack of skills?

Jen’s visit to Philip Graves, paediatrician and member of GAB, was the big item for the day. He took a full history starting right back before she was born. Going over her birth and early years is always an emotional experience. I told him things I don’t think I’ve told anyone before and I start to wonder what is fact and what is fantasy after all this time. Remembering incidents from her past, it makes me sad that we never really appreciated her gains and skills when she had them, and then she lost a lot in periods of bad fitting. When she was crawling we could only see that she should have been running and skipping by then. When she made a few meaningful sounds, that she should have been talking. I don’t even remember her being a proficient crawler, but one of the Hynes boys found her once, half-way along Laverton Street, on the other side of the road, full-speed-ahead for Victoria Street, and carried her home to me. So I guess she did crawl. How old was she? How long did she crawl for? I don’t know. I don’t remember.

Then I went up to Jen’s school for her intelligence test (the correct term these days is Psychometric Assessment, if you don’t mind). The Regional Psychologist and a silent off-sider did the test on me. Jen wasn’t even there. Just a lot of questions. Is she able to help around the house? Can she dry herself after her bath? Is she aware of dangers? There weren’t many ‘Yes’ answers. This Vinelander Adaptive Behaviour Scale can be used to give a scored rate – to American norms. That will do. The psychologist had assessed, on clinical judgement, that there was no point even attempting a WISC or a WAISS with Jenny. She’ll do a report for the school as well as the Board, so that will be useful.

At Jen’s Parent-Teacher interview I was given a copy of the psychologist’s assessment report. Pretty much as I’d expected but still upsetting to see it confirmed in writing. In her best areas she’s functioning at the level of an eleven month old baby, in some other areas at a six, seven and ten month level. I wonder if they’ll really try to send her off to a TAFE college when she turns twenty-one.

By 1990 we had already decided to build a pool. I’d discovered at Altona pool how mobile and independent Jenny could be in shoulder-depth water, and figured that with a daily swim she’d do even better. We came up with the idea of a smallish pool, not too deep, heated, and with a spa and a hoist. It would be in a beautiful room attached to the back of the house, with big windows overlooking it from the kitchen, the family-room and the back decking. There would be a shower next to the hoist, and plenty of space for doing things in while watching Jenny swim. A grand vision, but what a process to make it a reality.

On the news this morning was an item saying that the rumours about the Pyramid Building Society going broke were untrue. I immediately panicked. “For heaven’s sake get our money out. We need that money for the pool.”

I’m getting rather sick of all the hassles with building the pool, waking at night worrying. The whole thing is seeming like a stupid nightmare that will never actually happen. Jeannie says they’ll help us re-lay the bricks we’ve taken up in preparation, and we can send Jen swimming, in a taxi, with a paid escort, every day for years, for the cost of this Taj Mahal.

August, 1991 Jen had her debut in the pool. At long last. It went really well. She was in for about forty-five minutes, moving all the time and refusing laughingly to come out. Nanny and Ann came up to see her and she had a great time interacting with them. I finally grabbed her wrist very firmly and got her back onto the hoist and out she came. The shower was a bit hard to adjust, but apart from that the showering and dressing process worked pretty well. All the neighbours came for a celebratory swim later, and a celebratory bottle of Bailey’s Irish Cream went west.

Athalie drove me home after the school working-bee and came in to see the pool. Jen was still on the trampoline but nearly climbed off when she heard my voice.

Jen was pretty active all day. A domineering demon in church, up and down and back and forth along the balustrade during the afternoon, and all over the place in the swimming pool, refusing to come down to the hoist to get out. I took the big Monsteria from the bathroom out onto the deck, planning to wash its leaves and put it in the pool room, but the little horror pulled half its leaves off.

The wind had blown the pilot light out and the pool was only 26°. When I lowered Jen in she looked alarmed and started whimpering and trying to clamber out, so I raised her straight up again and gave her a nice hot shower instead.

I put Jen in the pool and Jo, Meredith and I had a group sequinning session for an hour or so by the pool. At a rough estimate, there’s another 22 hours of sequinning to do to finish the little costume I’m making. Jo and Meredith spent the time criticising their ballet teacher. Must be nearly time 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 not having fun. She’s getting used to a new handler who makes her feel insecure. Sally, the WSS worker who’s going to be on the roster while I’m away, came tonight to get some hands-on practice with Jenny and I realised how much of what I do with Jen is dependent on her being made aware of what is expected of her by cues so subtle I don’t know I’m giving them. When a novice is told just do this or just do that, it doesn’t work. I have to stop and consider what it is I’m actually doing and spell it out step by step. Sally was here for over an hour and I keep remembering things I didn’t tell her. Still, people muddle through, Jen adjusts and adapts. Sally’s a strong competent, confident lass; I’m sure she’ll manage.

It was very windy. Very very windy, all night and all day. I spent a restless night, noticing the wind, and worrying and wondering. Do I really want to go tripping off to the other side of the world for a whole month with who knows what horrid things happening at home while I’m away, and how would they contact me, and what if something happens to me and what if this and what if that, as the wind rattled ominously in the roof and shook the windows.

There comes a time on these trips. You decide to go, and there’s months of planning and preparation and anxiety, and you wonder if you’re doing the right thing and what will go wrong, and the time comes and there’s hours of waiting in sterile airport, queues, officials, long long passageways, unending night as you fly west, west, west, airport food, and you wonder why you’re doing this, and you drive through Harare and it’s dry and brown and poor and depressing, and the van is stuffy, the leader racist, the company indifferent, and you think you made a terrible mistake, then as you wind along a dusty, shrubby track the magic comes. Your companions start leaping around in the van like a mob of excited schoolboys driving in to Disneyland as bird after amazing new bird is sighted to left and right. The camp has little oval huts with thatched roofs and trees and cool drinks and you think, ‘Yes! This is the life!’ and you stop fussing about the people at home and start enjoying the birds and the people and the country. There comes a time of magical freedom and rapture.

I’m looking forward to getting home now – to see everyone and be in my own place with my own bed and toilet and talk with my own people. Other people are all very well, just too sweet and gorgeous, but they’re not your own people, are they? It was good to talk to Andrew and Jo this morning and hear that all was well. Jo has organised for Annabel, a dancer, to come and board with us for the rest of the year.

Tearful greetings, hugs and kisses for darling Andrew and Joey at the airport. At home Jen gave me a tired smile then pushed me away and pulled the blankets up and would respond no more. Does she forget or does she resent? Or was she wanting to go to sleep?

Jenny has forgiven or remembered me, and is friendly and happy. Certainly some was memory – she reached down inside my jumper to pull out the locket to bite on it. I’m so pleased to have her cuddles and laughs, hair-pulling and kisses again.

Jen seemed to be enjoying her swim, so I joined her. No wonder she thought it was good. Hotter than a hot bath in Africa. 35° yet. My God, how long has this pool been this hot? No wonder the water is murky – all those teenager bugs multiplying exponentially in a 35° medium. Delightful, but downright dangerous, not to mention the expense. Mother is home – pick, pick, pick, nag, nag, nag.

By Christmas 1994 life was pretty busy at our place. I seemed to be forever rushing off to meetings as the new year got under way.

And so that was Christmas. Church, presents, eating, presents, eating, recovering. Fellowship, friendship and food. We walked to Church, Jo, Kane, Andrew, Jen and I, after an initial present opening session and some nuts, chocolate and pineapple. Andrew liked his VCR. Jo liked her tent. We all admired the gate Kane and Jo made to stop Jen rolling down the decking steps. I wore the new dress Andrew gave me to church, and Jen wore her new clothes. Andrew didn’t wear his new red pyjamas. Jen tore down a paper star and chewed it, and nearly pulled over a big fan.

Jen was in the pool when I got home. Julie stayed on for coffee and a chat so then it was a real rush to get Jen out, showered, dressed, medicated and into bed before I left for the WSS meeting. Jo cooked beef teriyaki and rice for tea and fed Jen in bed. What a good girl!

The special meeting of school council accepted the recommendation that Athalie be appointed principal, and we filled in all the boxes and signed all the right pieces of paper. Everyone is sworn to secrecy until the official announcement next month.

Home. Boring mail. Dithered and dallied, and doddered off to the CAA meeting. Marise, Joy, Helen and I, from 8.30 to 11.00. We talked about vegetables, gardens, seeds, grammar, pronunciation, books, films, short stories, Maori culture, returning ‘off food to the supermarket, the check point for the Walk Against Want, children’s education, local celebrities, newspapers, and painting. We drank tea and coffee, and ate biscuits and cheese and Joy’s tiny tomatoes grown in a continuous genetic line from stock given to Joy’s father in 1952.

At 10.30 I said,’It looks like Lyn’s not coming. Should we start the meeting without her?’ They laughed.

One exciting outcome though. I suggested running a short story competition. They embraced the idea with enthusiasm. I doubt that we’ll raise much money, but I could be wrong, and we’ll have fun finding out. Something to get my teeth into. I’m to take a ‘proposal’ to the next meeting.

Home again. Jen fitting. Football on the TV again (nearly every bloody night there’s bloody footy). Hair on the CD player. Jim occupying the lounge. Jo in bed. Annabel unhappy. Jo doesn’t know why. Andrew unhappy. He’s been at work. That’s his excuse.

The University year started and the boarders returned. Jim to continue Town Planning, Annabel to start her Dance degree. Joey was off to Uni too, and Jen went back to school. Life continued on its merry way.

And now it’s my birthday and we’re out of toilet paper. Great! What did you do on you birthday? Oh, dealt with the great toilet paper crisis. How about you? Oh, I went up in a hot air balloon. Absolutely fabulous darling.

And what a crisis. That Jen had a thing or two up her sleeve. Well, in her pants actually. You guessed it – the lack of toilet paper compounded by shit galore. In the midst of this sweet Jo emerged with presents. ‘Not now, not now, I’m far too busy for birthdays,’ I cried, fending her off with smelly dripping hands. It became my cry for the day.

Fortunately Andrew was going in late, so he fed Jen and met the bus while I dashed off to SSAT.

While I waited for Jen’s bus I read a booklet of winning short stories from another competition I didn’t win and ate sea-shell chocolates from Kane. Suddenly it was 4.45, Jen was home and I was due at a WSS meeting at 6.00 I had one hour to give Jen a drink and a swim, put away the marketing, feed the animals, tidy up, put on the washing, shower and dress Jen, read the papers for the meeting and get myself dressed. Into that hour came Annabel with beautiful tiny pink roses and birthday kisses, Aunty Gwen with birthday wishes and courteous interest, and Nan and Philip with presents, cards, flowers, cake and sparklers. ‘Not now, not now, I’m far too busy for birthdays,’ I cried again and again as I found vases and thanks and made arrangements to meet for cake tomorrow. Andrew came home and I hurried off with my unread papers. Then we waited twenty minutes for a quorum before the meeting could start. It’s always the way.

Home via Food Plus for toilet paper at last, to where Andrew had fedded and bedded Jen and was holding a Windward meeting. Ron called in about 10.00 pm to say Happy Birthday. ‘Not now, not now, I’m far too busy for birthdays,’ I cried, warding off his hug with a bundle of smelly sheets. Yes, Jenny had done it again. Chucking once, chucking twice, and there she blows again! You really know how to make a birthday memorable, Jen.

(Have a seahorse, Mary. Mmmm, thanks, don’t mind if I do.)

While paying an astronomical paper bill at the Newsagent this afternoon, I chanced upon the Australian Rationalist, edited by Kenneth Davidson. It looks promising – rational articles on crime and things, longish and with footnotes even, and inviting contributions. You beauty! So I bought a copy, and I’ve printed out a copy of my ‘Carla’ article and my CV, and dashed off a covering letter to the editor, and it’s ready to go. It being my birthday and all, it must surely have a better chance of being accepted, rationally speaking.

Lazy days, Saturdays. Me up late, Jen up later, Annabel up latest. Jen had a long, long swim. I had a short one, but enjoyable. Jen, Thoz and I went for a late afternoon walk; past Hazeldean where I visited a patient, Thoz barked at the residents and Jen tipped her wheelchair over into a garden bed; past the milkbar where we bought treats; past the Honourable Ralph’s house where I slipped my neatly typed letter inviting him to launch the Walk Against Want and to come to Geraldine’s farewell party into his letterbox; past the Life Saving Club where I chatted to Iris about the future of the Church and the State, and to Jill about writing and the jellyfish sting on her face; and along the Crystal where I took photos of Thoz pulling Jen for a press release about the Walk Against Want for the local papers.

Joey said she’s decided to do Journalism at RMIT instead of Arts at Melbourne Uni. She heard from a friend that only four places were offered in Journalism in second-round offers. So, congratulations! How wonderful! Would you like to write an article for the local papers about the WAW then?

And another highlight. Jim’s back in town with red P-plates on his big orange car and a penchant for doing the dishes without being asked. Welcome back!

Annabel crept off so silently, without a sign of her passage. Wondering. She’d had a lot of candles glowing on her bed-head late last night – I saw them through the window as we came home. That meant we slept in, quick swim, steam-shovel breakfast for Jen, Andrew off to the station with his toast. Jim up at the wrong time – Jo’s got the bathroom, I’ve got the paper. Trudged off barefoot, unwashed, unread. Jo had time to bring in yesterday’s washing before her train. I suppose that’s something. Took the remains of my pay for her books. (You’ll note this style is reminiscent of The Shipping News, my current bedtime read)

Annabel is in the depths. She decided today to stop dancing for this year, to give her back a chance to recover. She’ll keep doing her academic subjects, and will do lots of physio, swimming, special exercises and even acupuncture, and hope. Everyone is saying she’s made a wise decision, but she still feels miserable, poor lamb.

Looking back, I am also dismayed and remorseful to read of warnings and premonitions that went unheeded and to notice my light-hearted preoccupation with death.

A crack and a thump and a call from Jo got me out of bed early. Jen was sitting on the floor, unconcerned, with the thick dowel that holds her net up broken. I wonder how that happened. It seemed to break her fall alright, but there’s always the worry that she may get entangled in it somehow.

Jenny had a fit while snoozing in the bath before tea. I heard the sudden splash and went in, but she didn’t go under at all – when she’s lying stretched out her head is on the rim at the end and it just turned to one side. If she was sitting up and jerked forward in a fit it could be bad. It’s one of my recurring nightmares that I wake up in a sweat and panic from – that Jenny has a fit in the bath and drowns. But she does enjoy a nice long loll in a warm deep bath and I don’t deprive her of it – just keep checking and listening for sudden tell-tale splashes.

My sleep was disturbed by an awful dream. One of those dreams where you’d swear you were lying awake thinking, and that go on after you wake up, disturbing the day. I’d gone in to do a 9.30 Board hearing (which I don’t do any more) and wasted a lot of time looking at all the new drapery on the walls and the Hearing went on and on, and I started to get anxious that I wouldn’t get home in time to get Jen out of the pool in time for the photographer at 11.00, especially as I was using public transport. This is where it started getting more nightmarish – Jen left home alone, in the pool!, while I go by train and tram for a two hour GAB hearing and a photographer arriving at 11.00, looking through the window because no-one seems to be home and seeing . . . This is where I wake up, repeating like that little girl on the Comedy Company, ‘But I didn’t! I didn’t do it! No! Not me! I didn’t, I didn’t!’

Geraldine, Jen and I went for a walk to the Rifle Range estate, strolling down Rifle Range Drive and marvelling at the monstrosities mushrooming to left and right. The Burbidge Drive tombstone is now incorporated in someone’s front garden, set in lush green instant turf. I wonder how the householders will react when the mourners gather on their front lawn and the roadway to sing a few hymns and dig a little hole to deposit my ashes in. Pity I won’t be there to see it.

And ‘before’, April Fool’s Day was just a day for silly jokes.

April Fool’s day. Joey came out of the bathroom and said, ‘Do you know there’s a system for blind people to drive now, with the dog barking the signals for turning and stopping.’

I started to point out the difficulties and then she pinched and punched me and I woke up. ‘Oh, good one Jo! April Fool! You really carried that off well.’

‘No, it’s true. I heard it on the radio.’

So she was the April Fool, falling for the trick on the radio.