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

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СКАЧАТЬ 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 СКАЧАТЬ