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Part One

Part One — Looking back to ‘Before’

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.