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

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СКАЧАТЬ style="font-size:15px;">      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 СКАЧАТЬ