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

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СКАЧАТЬ 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.

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