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

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