Ramping It Up: Children w disabilities, opinions, books

Falling off the blogosphere: And Gastrostomy insertion

I seem to have fallen off the blogosphere recently for no very good reason, although it includes an overdeveloped sense of guilt. Am struggling with the fact I have a work meeting this morning that means I'll leave from home, so have decided that the 20 minutes before 9 am can be used for "me", but no more.

Miz Morganise finally had her gastrostomy/ PEG insertion two weeks ago today. As always, it took considerably hustling and being a pain-in-the-arse to the hospital, all of which paid off. Whiel being determindedly "Lovely", I kept calling to see if they'd scheduled the operation, as I knew she'd been categorised as urgent in late November, but there'd been a hiaitus over Christmas. So by presenting myself as persistent but friendly, and ever so slightly implacable, meant that when other people cancelled, we got a last-minute "how about next week" call.

So, to recap: a gastrostomy is a tube and "button" that goes directly into the stomach and means M can be administered food or fluids more easily. We'd spent six months putting a naso-gastric tube down every morning, to give her water, as her "delayed swallow" and low strength means that ordinary water moves too fast in her mouth, with a risk of aspiration, and drinking thickened water is a slow process. This way, she was properly hydrated - happier - and a bit stronger. But sticking an NG tube down your child's throat is no fun. It's also not as hideously hard as it sounds either, or not with a child as easy going and low-tone as Miz M, but it's no picnic. It makes my nostrils twitch just thinking about it.

So the PEG will be a great long-term solution, although again any visit to the Children's Hospital, with a General Anaesthetic and post-operative pain is a bit of a trial. And the fasting, with a wee girl who simply cannot understand why she's not being fed: aaargh! And then in finding the right position for the PEG, they had to have two gos, so there was an extra puncture mark, and they had to hold off feeding her for another 24 hours. Thirty six hours without food and drink, when you're not quite three, don't know what's going on, and have pain in your tummy from an op . . . had me reaching for all the platitudes. If only I could take the pain and deal with it myself. If only I could somehow transfer and absorb it.

Then again, as always, the Children's hospital is an extended exercise in being grateful, lucky, and sobered by events. The baby screaming in the middle of the night. The pre-raphaelite beauty in the next bed, only 11 years old, with a mystery infection that had her pale and limp, but with a raging tempreature, and a whole "barrage of tests" as they say. And very nice parents, who'd spent a week livng and sleepign by her side. Luckily, it was sorted while I was there.

So M came home with her new PEG, but with a long tube attached, which'll be replaced in 3 months time with the permanent, discreet version. Meanwhile, ther's a rosette of plastic and a 30 cm tube poking out from just under her ribs, requiring ingenuity and the sewing of buttons and loops of elastic to her clothes. And just when Clancy had worked out how to sit and roll on top of her like a puppy, without biting, in a way that made her laugh with pleasure. So now we're having to keep them apart in case he pulls at the tube, which worries me in terms of the message we're giving both of them. But hey, it'll all be fine.

The odd thing about the hospital visit though, was the combination of being bored and distracted that happens. I took along the Peter Carey novel, Parrot and Olivier in America, which I know I'll just love. It seems to be a bit more like Illywacker in style, which is my fave of his. But no, I couldn't immerse myself in it as machines beeped etc. So just in case, I took along my cheapo, lolly-pink, portable DVD player I'd bought in the hope of doing more yoga and boxing workouts in the shed (which I've managed about 5 times so far, but here's hoping), and a set of the HBO series "True Blood" that I'd been given for Christmas. Well. My oh my. Funny and clever and just the ticket, although sitting by your sleeping child's bedside holding her hand while watching an erotic and explicit, blood filled scene of vampire sex, when a nurse comes up behind you to ask some question or other that I missed because of earphones, is a bit bizarre.

Oh look, four minutes to go before I switch to conscienscious mode, so what else: still reading Hilary Mantel's Place of Greater Safety on the French Revolution, which I'm loving but is taking me forever; read 2/3 of Mary Beard's Don's Life (in book form, not the blog) last night, and was completely engaged; just loved Colm McCann's Let the Great World Spin, but perhaps I already mentioned that.

And am also in a dilemma about an elderly neighbour who I've befriended and/or adopted. She's Italian, and her English is very bad. She's desparately lonely, so I was happy to invite her in and chat to her, and in some ways she's pretty easy going. But she's started to come around every day, and it's a bit exhausting. Even more, she frames her life entirely in terms of hardship, negativity, work and thigns being difficult. I'm not suggesting it hasn't been tough, but the answer to everything is "ver hard, work very hard", not just about herself but about me. If I say what I've done, she'll say, "Oooh, it's so hard for Mama", and I simply cannot and will not frame my life as a negative grind or a tragedy. So I worry that it's just the lefty soft part of me that's doing this, and wonder whether I'd be quite as forgiving if she was an old Anglo woman. Am I being suckered into the Romance of the Migrant Story? But there are also things I quite like about it, and I'm more than happy to explain why the letter she got from the govt is ok, and doesn't mean she's in trouble, to pick up things for her, to give her a glass of wine on the lounge. But I'm goign to ask some Italian speaking friends for some words to throw into the conversation, to try to explain why I need to be strong, resilient, positive, happy. I tried to ask her yesterday when she'd been most happy in her life, what made her happy, and she just said, "I no ounderstand", and I don't think it was just the language. A reminder, instead, about the different way lives are lived and understood.

Ooops, two minutes past 9, the guilt clock is ticking. Better go.

Lunches, Disability Insurance Schemes and (of course) Deadlines

I was called "dear" by a young doctor at the Children's Hospital yesterday ("What was your name again, dear?") and it was all I could do not to hiss at her. Of course, hissing "Don't patronise me, Girlie" would defeat the purpose, and I even pondered mentioning it to her colleague on the phone this morning (do you reckon you could ask your intern . . .) but decided against it. It's like the no-brains-at-all-apprentice where I get my hair cut, who calls me Dear and Doll. I think he's eleven. It irritates me - shits me to tears - but there's no point "making a federal case" of it, as it were. (Being Australian, methinks the line, "There's no point taking it to the High Court" won't ever really slip into popular culture the way that particular Americanism has.)

So, was at the Children's Hospital yesterday with Clancy for a change, in the interests of MCAD. He was sick, had a temperature, and was refusing to eat. With any other kid, you'd give them lots of water, and it'd be fine. But no, potential (but not actual) dramas at every turn. Heightened by a bit of strategic and v loud dustbusting by Abe while I was having the obligatory phone confab with the hospital (yep, that's domesticity for ya). So had to spend a few hours in Emergency while they decided whether an IV drip or a naso-gastric tube was going to be needed, and instead we've added yet another potion/ tin/ kg of stuff to carry with us: "PolyJoule", like water, but with calories and no taste.

And joy oh joy, I got to meet the patronising young doctor.

But enough, that's boring. Also headed out on Sunday to do some "disabonding", to meet up with a bunch of women who also have small children with disabilities. I've been invited along so many times it was becoming Bad Form not to go. Ambivalent? Oh yes. The old club you never intended to join thing. And of course of course, it was terrific and interesting and sobering all at once. A woman whose child has a very rare disorder (less than 20 incidences in the whole of Australia), and who spoke blithely of weekly treatments, portacaths, surgery, and bits of cartilege where bone should be. Her daughter had to wear a metal "halo" for a year, but can now hold her head up, speak and even (very recently) walk. Another two whose children both have rare disorders, involving limited movement, twisted limbs, and endless hospital visits. One told the story of her son's birth, which was so traumatic you could see her distress and a certain amount of steel even as she spoke of it. The woman next to her combined matter-of-fact descriptions of major surgery with any number of little stories revealing what a strong-willed character her daughter is, hurling toys and dolls out of her bed, as no-one but no-one takes space or attention away from her own little self. Another whose daughter had a week where she spoke a few words, but has not managed it since. The final woman had a son with ASD, and seemed a little over-awed by the stories of physical disability, and didn't quite know where to place herself.

And in case that sounds too serious for words: pinot gris; crispy barramundi on a lemony risotto; and a desert that added about 3 kg just by the end of lunch. (I know about healthy weight ranges, and at least 8 kg are supposed to go by Christmas, in the interests of living a long, happy and healthy life with better frocks. I believe a stronger strength of will is required.)

Nobody was whinging in this group, I'd have to say, but there were once again stories about equipment, and organisation, and medical procedures, and practicality - with the sort of wicked laughter you can most easily share with others in the same predicament. So of course I had all that in mind when hearing Rhonda Galbally talking about the National Disability Insurance Scheme on RN. I'd been hearing about the scheme itself for a while, but what's new is the research, and a report on the experience of families with disabilities in Australia. I haven't read it all  yet, and yes it's sobering.

The thing I can't quite get my head around, and which Galbally mentioned, was the problem with education and the way in which both mainstream and special schools are failing those who need them. I've heard and read many critiques from people who've been shunted into special schools and ran away screaming (And I know there's at least one PhD underway on that right now), but these are from people who academically went gang-busters and for whom mainstream schooling worked very well. What I'm not clear on is why, if special schools are part of the regular, public schooling system, they're not just as accountable as every other part of the education system. Because while I do appreciate the notions of inclusion, it's not clear to me whether that will work for Miz M, given her high level of physical needs (although I know these should be dealt with in a regular school, with the right level of support), and given the likelihood she won't be able to speak, and even the likelihood (although I think the jury's still out on this) that she also has an intellectual disability. Shouldn't the Special Schools be just as good, if not better, at making sure these kids get a good education, that does open them up intellectually and creatively, that isn't about sticking them in either physical or metaphoric beanbags in the corner? It must not must not be a fait accompli that these schools are below par. And the deputy principal at the school I've spoken to, seemed pretty clear on why meaningful pedagogical outcomes are possible, but I gather there are no properly thoguht through curricula for special schools. Not good enough, comrades, so I wonder who I appraoch about that, and whether I should start with Miz Galbally herself and ask her what she thinks?

Although there's clearly lobbying around the actual National Disability insurance Scheme, too. 

Meanwhile, though, there's the question of how we all cope, stay together, stay positive, or - depending on how you look at it - don't fall apart. And I've recently glanced at a new report on resilience and families of children with disabilities, but have not had a chance to absorb it or respond to it. Some people are sick of the word "resilience", and have been Ann Deveson'd out, maybe, but as a concept, I still get it. At least, get why it matters. I've never thought the bounce-back-ability definition was quite nuanced enough though, so maybe it's time for a new catchphrase. But they go in and out of fashion, don't they. ("Not Happy, Jan" - a response to any moment of being patronised, ignored, irritated. Where would we be without it.)

Meanwhile, I know I'd be more positive and bouncier than an india-rubber ball (as King John said, in an A A Milne poem) if I was able to do some decent, sweaty, muscle-burning, cardio exercise. And if I could deal with my cheese addiction.

Hmmmmmm: insert literary and cheesy segue, connecting dairy to court of Henry Vlll and the fabulously interesting Thomas Cromwell. OK, if we take it as a given that I've done that successfully: So, Hilary Mantel won the Booker! I really enjoyed reading this brick-sized book, but haven't as yet read anything else on the short list. (Love A S Byatt's Possession, but wasn't wild about any others, which makes me nervous of the Children's Book; against all odds have not converted to Coatzee, but really should give that a go; like Sarah Waters, but this one doesn't sound as successful; which means I have the one about the 1840s asylum, and the one about Czechoslavakia in my sights . . .)

Time to head off without hissing at anyone, and to see if I can manage the rest of the week without being called "Dear". I'm not quite at the feirce "I"m not your dear-anything" phrase, which I have a feeling my mum used to occasionally use, in her flea-in-your-ear moments, but am prepared to build up to it. I used to know a woman at uni whose dog was called "Girlie", which was short for "Don't Call me Girlie".

So, Don't Call me Girlie, m'dear.

PS Adelaide, thanks for your comments. Yes, there are great pieces of equipment out there, just not at every park. There are even great swings with enough head support etc, but our v small courtyard really is small, even for Australia. No grass, no room to swing a cat. And no, slings don't work for her, as no head control means she doesn't have the strength to be supported in them (and I carry Clancy on my back while she's in her mobility thingo). There are great chairs and seats out there, a no of which we have - and allow for good interactions at home or at childcare etc. I"m probably being unrealistic in wanting something easy and portable.

Treetop walkways and bushwalking with a mobility device

So many allegedly "green" and other critiques of the world - especially about consumerism, authenticity, travel-versus-tourism, footprints on the world, and heaps of other things but I'm not in a list mood - are based on the unencumbered, the able-bodied, the young and the righteous. And hey, I don't like being put on the defensive. But here goes. If I could have an "authentic" experience, off the beaten track, with nature and without pollution, without too much luggage - or baggage - then I would. OK, well, if it involved camping I wouldn't, to be honest. I've never quite seen the point. But work with me on this. So if I could, I might, and if I did, I'd catch the train, and hoist a bag, and carry a bottle of water and a book, and hold hands with my fella, and we'd slather ourselves with sunblock and jump into the ocean without looking back.

Instead, when we head out, there's a carload of stuff. There's back up. There's a heavy-duty mobility device, pretending to be a pram. There's water, for three of us; but there's thickened water for Miz M, so she doesn't aspirate. There's carnitine, for Clancy, in case he decides to go into a metabolic meltdown. And yes, there are mobile phones, all charged up and ready to go.

But we still want to just run onto the sand, dive into the waves, hare off up a path. Like many a parent of toddlers, we can't; but unlike some of the others, we have to assess those paths with a practiced eye. Look at the curve. Contemplate the buried roots. Think about those rocks.

And so, instead, we ended up in the Lamington National Park, at a guesthouse, driving up a winding winding road on the Friday night. Abe, tense and tired and grumpy after a difficult day/ week/ month at work. Me, slightly unprepared and feeling hassled and hussled. Every 100 m or so there's another sign warning of a "blind corner", a single lane - but no warnings about unexpected demands to read maps, to alert to signposts, to beware overhanging cliffs or conversation, falling rocks of comments, and other moments in the front seat. No dramas in the back: two small children in flanelette pyjamas as the weather was strangely cool, and we were heading skywards. So, conversational gambits wound through my head as dangerously as the road, and came out like those wire baskets that stop the side of the road from falling in. One of my brothers-in-law spent a terrible summer filling and making those; a desparate job and days relieved only by drinking too much at the end of them, and talking shit with the instant-friends from the work group (him, not me). So instead, we reverted to silence, while on Radio National a terribly amusing grandson of the bullying, clever, dreadful Waughs spoke about fathers and sons, literary antecendents, and the power of letters in the archive. Funny and inspiring, but the road curves didn't get any easier.

Finally, we arrived, and it was cold. So we cranked up the heat in the room and dehydrated ourselves and baked, tossing and turning under covers imprinted with "regent bowerbirds" with their flashes of orange, while Clancy complained and wiggled and would only settle in our bed, where he threw out wild and indiscriminate little arms, to wack us each in the eye.

The next morning was clear and beautiful. Poor Abe was exhausted, and he and Clancy curled up together, sweetly snoozing as we'd finally made the room comfortable. So Morgaine and I headed off for a guided birdwatching walk, at 6.30, where we met up with a group of mostly-elderly cheerful couples, one funky pair of 40-somethings, and a woman who I thought had woken up in a giant flanny nightie and slipped on a jacket, ugly shoes and a fleece jacket, in what seemed a moment of bravado and confidence, and I was ready to admire her bushwalkery don't-give-a-damn . . . and then I realised later it was just a terribly unflattering skirt. Ooops. So we could mostly walk along the walkways, and see dozens of birds, explained by a dry, knowledgeable, interesting woman. Flashes of colour. Strange sounds - including a "cat bird", that could easily have been rechristened a "strangled cat bird" - and iconic sounds, given context.

Iconic sounds, like the "whip bird", which I've heard so many times, echoing around the bush, but had never seen. Birds that mate for life, and a more confident male came skimming and hopping along the ground, to accept various approved-offerings to take back to his mate. A sound that echoes off cavernous skies and across valleys, implying high branches and grand outlooks, but which instead come from the ground. I've always associated it with bushranger Ben Hall, and the romance of his defiant, anti-state stance, all fed by populist writer Frank Clune, and the TV version which gave me one of my first ever childhood crushes.

Morgaine, I suspect, wasn't thinkign about bushrangers as I pushed her through the bush, but she did seem to enjoy breathing in the air, hearing the trees, and getting ready for an extremely large breakfast.

Later in the day, we went on another boardwalk, up to treetop level in the rainforest . . . and this is one of the few ways she'll ever get to experience the bush. It'll be constrained, rather than wild and unexpected. It has to be wheelchair accessible. It can't easily be off the track, taking another path, following the road less trodden. So many many constraints for my sweet girl, and there's a challenge for parents of a child with a disability: how not to overly constrain, overly manage, hem in? Are those treetop walks a wonderful opportunity, or ridiculously lame?

Still, some of that managing of experiences is just about childhood, not about disability. Communing with nature? Well, how about paying 4 bucks for a metal tray of birdseed, especially selected so as not to damage the natural feed patterns of the Crimson Rosella . . . and then being swooped upon by these gaudy, raucous, beautiful, bright, unlikely looking birds. Clancy was entranced and amused; Morgaine laughed out loud and shook her feet at them; and I thought having these beautiful, raucous, bright (you get the picture) birds walking on my arms and landing on my hair was EEK GET OFF ME!!! GO AWAY! GET YOUR SCALY LITTLE FEET OFF MY BARE SKIN YUK YUK YUK. Apart from that, of course, it was fine . . .

Then on the way home, on the Sunday afternoon, we were able to enjoy winding down the mountain and actually being able to see. While at the bottom, there was a vineyard with a tasting room, and a river with simply gorgeous trees and outlook and a huge homestead, that - apart from being in completely the wrong state - seemed very Ethel Turner, very "Seven Little Australians". I had a surreptitious check under the tree to check that Judy wasn't there, squished, in one of the most memorable moments of melodrama from both literature and tv for me, rivalling my crush on Ben Hall. I always overdid things, as a kid, so as well as reading Seven Little Australians, I searched out the other books that followed in the series, including "House at Misrule" (is that what it was called?) which the librarian sourced from one of the teacher's own bookshelves. One of those ancient books where the pages are crisp, and corners break off it you're not careful. Now, I think that was a helluva effort that woman made for me, a ten year old who wanted to read ALL the books in the series. I can see the library now, a demountable, and a small round woman with dark hair.

From that, though, the idea of "Misrule" has always appealed to me. It appeals to me as a carnivalesque idea, but there's always been a touch of Australiana about it for me: a rambling house, a bunch of kids, some 1890s-style nationalism that proclaimed the Aussie kid as "different", by which she meant "different from" the English. But when you're ten, that "other" is hard to identify, even if you know it's there. And at a pinch, I wonder if I can remember their names, without checking: let's see - Meg, Pip, Judy, Baby, Bunty and the Major. I think I've left one out. None in a wheelchair, of course, because the tree branch that fell on Judy, in the book - and in the TV series when I was about 8, that broke her back, killed her rather than injured her. No space, there, for surviving in a different body. With the tree, she both lost her defiance and kept it forever. Remained an ideal. Occasionally, but not very often, that actor turns up in other roles on TV, and it's always surprising. She must have extricated herself, you think; she walked away after all. Perhaps those legs will walk, after all.

Problem solving, making and doing, and yet another seating challenge

Clancy just fell asleep on my lap, as I juggled a bottle for him and a copy of Charles Frazier's Cold Mountain for me. The character Ada - middle class, educated, suddenly without companionship, resources, or even the ability to get through the day and eat well - describes herself as "immensely cheered" by Ruby, the young woman who comes marching up the road full of plans and demands for equality. I also find myself "immensely cheered" by her. This is a book I can always pick up and reread, while finding something comforting about the details of resourcefulness, building, making, changing and having an impact of the world that these two women embark on together in nineteenth-century America. They plow, grow, mend, make, cook, preserve and barter things in an uncertain world. Meanwhile, there's a Civil War, indigenous history (oops, Native American I should say), and a love story hovering in the background. And reading. The power of reading.

There's something about this resourcefulness though, and the detail of it, that I've always found fascinating. As a child I remember loving the parts in books where people made soap from scratch, or built things, or took me to knowledge of places and practices that were utterly unfamiliar. There was a very old copy of the Swiss Family Robinson on the bookshelf - I still have it, red cover with gold curlicues and yellowing stickytape - that answered those narrative requirements for me, as well as indulging my love for fantasy and invention, flourishes of the unlikely. Because now, that book is a strangely colonial, quasi-religious tract, that invents the "Other" so ridiculously that these Swiss missionary types, with their earnest prayers and endlessly patient Mother with her big bag of everything, supposedly landed themselves on an island that had kangaroos and elephants, donkeys and giant boa constrictors, bears and sugarcane, all in the one place. It certainly made me watch Survivor in a particular way.

So this fantasy, of "making and doing" has had quite an impact. That, and having parents who were born and brought up in the Depression and World War 11, who were working class and proud (in Dad's case) of having a trade, as a builder; proud, in Mum's case, of being an excellent dressmaker who could "run up" almost anything. All of this, I think, has instilled in me a belief in the importance of problem solving. Of fixing things. The only drawback, of course, is that I don't quite have all the skills.

And the challenge of M's disability - OK, one of the challenges - is about equipment. Seating systems. Mobility devices. Shower chairs. Special beds. Standing frames. Straps, webbing, and padding. I blithely tend to believe that there are solutions available and then, when I discover there aren't always or aren't easily, go off in fantasies of making and doing. A girl has to have a shed (although I don't); every woman needs her power tools (or at least, one drill); and at the very least there's a sewing machine.

So my latest obsession is some way to allow M to be more readily included, better able to interact with other two year olds, in a park or backyard. Her lovely chariot makes her too high; the tumbleforms seat is too hot; the shower chair was too ridiculously expensive to haul around the place. I tried one of those little foam lounges with lots of props and cushions, but it left her looking like a crumpled teddy bear losing some of her stuffing, slumped in a corner - although it was a huge hit with the other kids, of course. So I'm thinking I need a child's size fold-up beach chair, with a back that will reach up past her head, to which I can attach a head piece and chest strap, and maybe a hip strap as well.

But it's still "winter", so these things do not exist in department stores at the moment.

But it's still "winter" for a few more days . . . although it reached 35 deg C at 4 pm yesterday. We're not quite Spring yet, and it's hot and dry and gasping. It's not quite Spring and I wanted to spend the day walking with Clancy, doing some decent exercise, building up a sweat . . . but not building up quite THAT much of a sweat. Sunburn. Glare. Dehydration. And. So. On.

So instead, I'll try to invent other solutions for my girl.

Meanwhile, I'm back at work for two days a week, enjoying the fizz and bubble of ideas and deadlines, being organised and talking to people, writing papers and pursuing possibilities.

Remaking the morning: Abe and I rushing around feeding Morgaine and Clancy, getting them washed and ready, checking their little bags, getting ready for work ourselves. Not sure what to wear - I'm reading Linda Grant's Thoughtful Dresser (the book not the blog, but oh look here's the Blog, and wanting to be a bit more playful and a bit more extravagent on the clothes front; saw a fashion exhibit at GOMA on the weekend, and thought about colour and flair. Is this OK, I said to Abe yesterday, is this OK? Is it too conservative? I don't care what you wear, said Only-One-Coffee-So-No-Subtlety-At-All Beloved. Not quite my question, my sweet, I said, but decided on the brown dress anyway. Naso-gastric tube down M, ready to give her some water. Ooops, triggered the gag reflex, there goes the porridge. Oooops, KER-CHOO, an oaty sneeze covers me with porridge. Abe looks at me. Yep, I think that dress is too conservative.

Oh ha bloody ha ha. Still, it did mean I went for the more fabulous option.

So, enjoyed the day spent talking to academics and others all round the country. Making frantic notes. Building new schedules. Not enjoying, of course, the end of each day where I hurl myself off, worried that I might be caught in traffic; worried that I'll be late to childcare; wishing I'd got more done; cursing a piece of technology that didn't behave quite as I expected; seeing clocks ticking everywhere. How long does that last, I asked a friend last night, bowing to her expertise as a fulltime worker with three children. Um, never. And yes, there's a lot of hurling about, isn't there, she said.

Tick tick beach chair; tick tick books to read; tick tick letters to write; tick tick washing to do; tick tick prepare for tomorrow's meeting; tick tick check emails; tick tick guilt. Tick tick it's a beautiful day, let's not get too hung up on those deadlines girlie.

Oh yeah, almost forgot, I also had a "making and doing" attack recently when I was thinking about the challenges of childcare and play, representations of children with disabilities, the idea of dolls that look "like me" or, in Clancy's case, look "like my sister", and whether there might be wheelchairs for dolls and stuffed toys available. And yes, I know there are many fraught arguments around all this, about normalising or not, freakery or not, inclusion and difference, the politics and ethics of it (and so on and so forth, and I do remember that the un-Barbie doll "Feral Cheryl" didn't quite take off), so anyway . . .

So anyway I did some searches online and came across some beautiful toys and dolls, accessories and games, toy wheelchairs and ramps - which tended to cost a gazillion dollars or not be availablea easily in Australia. So I grabbed some masking tape and some lids, a funny little finger puppet someone had given us, and voila, toy-Morgaine in a mobility device emerged (until it fell apart and the carboard seat back fell off):

Shit and String Beans: Marilyn French and Sleepless Nights

There’s always something to worry about at 2 am, or something that can creep in and hop on that little treadmill that gets your mind turning. Scampering about on its little feet, getting faster and more harried, pulling other little creatures onto it too. Not so much a stealthy footfall – not the sleek, furry entry of Ted Hughes’ “thought fox” – as an increasingly frenetic scurry. I remember reading that Hughes poem at school, and hell, that was well over 20 years ago, and something about the line “the sudden hot sharp stink of fox” that meant the poem was written, that line always stayed with me.

 

But it’s not poetry that enters my head at 2 am, it’s a list of obligations and desires; the things I should be doing and the thoughts I’d rather be pursuing. It’s my bloody buggery bollocks overdue tax returns for the last FOUR YEARS. Well, hey, I just finished them. I’ve addressed the envelope, and now I’ll need to send it by Express or Registered post, for fear of the documents being lost. (Which reminds me, I heard P J O’Rourke ranting about The Government – all government – last night on the radio. Part of his argument for less government, was that it can’t even get the post right, so how can we trust it with anything else? Well, I would’ve thought the postal system was something that on the whole does work, at least here; and internationally, the “penny post” was one of those early pieces of information technology that connected the world, and remade it in the shape of British Empire and all the Pink Bits. Well, that and the telegraph.)

But what I really mean is: holy hell, I finished my tax, sort of, except for the bit where the accountant checks it all and sends it back and tells me it has a fatal flaw. And that only leaves me with 986 things to worry about on any given night, not 987.

 

Although at the moment, any time I snort or fart or roll over or am awoken by an alarm or a baby snuffle, and have to get up and feed Clancy, there is poor Abe, staring at the ceiling and I can see his treadmills going around on warp speed. Worrying about work. Working crazy hours and grappling with yes very very big issues. Insomnia is catching, so we both stagger out in the morning, blearing at each other before coffee; while fending off the delighted yelps and shrieks and porridge-covered hands of Morgaine and Clancy.

 

And then I get to worry about my own return to work, and what it means to have been away for eight or nine months on Mat Leave. (Although hey, it looks as though tomorrow's Budget could be introducing wider paid parental leave for all. About bloody time.) What does it mean for work identity, identity identity, skills, career development, juggling every damn thing, and whether I’m about to be shunted off into something less interesting given the demands of a shrinking budget and not being so much in the spotlight. Not to mention being part rather than full time. Conniptions have to be rather restrained right at the mo, though, given the very real pressure Abe is under. And the tedious thing about all this, of course, is how familiar it is, how much it’s part of the (especially womanly) zeitgeist. Still, anxious I may be, but I’m not falling apart under the older pre-second-wave-feminism paradigm, of resentment and what the recently-departed Marilyn French called, “shit and string beans”. Some women still are, of course. But I remember first reading The Women’s Room when I was in my teens, and although it had been written a no of years before, in 1977 when I was 11, it was already partly historical for me. That was not my life; it was not my expectation. I knew I wouldn’t be straitjacketed into domesticity and motherhood. I guess that’s why I waited until I was 40 to do any of that – and, as Wendy McCarthy said about it recently, our expectations have changed; at the same time as she talked about how empowering that anger could be. But at the time, 14 or 15 or whatever I was, it was French’s way of characterising what so many women did as the work of “shit and string beans” that really got me. That had me striving for something very different.

 

And there was mum, seven children, and she dealt with an awful lot of shit and stringbeans, even while she encouraged all of us to keep striving.

 

Mum never saw me as a mother – even though when she died she already had more than 10 grandchildren. She worried about me, my apparently-single, moderngirl life, at the same time as she rather liked bits of my life. Whenever I went home to visit, she’d ask me in about 5 minutes if I was already bored (which I wasn’t; I was there to see her). I wish she could’ve met Abe – I think she would’ve liked his sharp, clever manner; his no-nonsense; and let’s face it his good looks. Huh. She would have too. But I think she would’ve been so sad about M’s disability, and that would’ve been a new thing for her to deal with. She took her children’s cleverness and being able to do things as a point of pride; at the same time as being, as she’d readily admit, a “fighter”. I can just see her, rather small and fierce, turning herself into an advocate. I guess that’s where we all learnt it from. While dad was happier to be a dreamer, a romantic, a giver of gifts and a chooser of the most overblown birthday and mother’s day cards ever. Close ups of dew drops on roses. And a bunch of carnations from the servo to go with it.

Still, he wasn’t an impractical dreamer, my dad. He was a builder by trade. A worker. King Gee overalls and still using some of the same tools he’d made himself as part of an apprenticeship. Hands that seem impossibly large when you’re a kid. A cigarette held high in the fingers, close to the hand, so they never got in the way of holding a hammer or flicking an awl or – in his later work, as a fruito – using a large knife to slash open the ties holding together a 40kg Hessian bag of spuds. Standing there, after school, in the back shed, weighing them up into 5 and 10 kg bags. Now he, on the other hand, might have wept over M; and then he would’ve been up here like a shot, building things. Homemade ramps. Large wooden structures. But he died at 62. I can just imagine Clancy on his knee though, laughing out loud. Two sets of very blue eyes looking at each other.

 

So today, I was going to think about what the Hanen communication course meant, and where the gaps were in the way it imagined us all. We “carers”. Who’d sometimes be hurried along a bit if we stopped paying attention to the occasionally simplistic “comprehension” parts of our course, and started talking about our own challenges. The child who can’t roll. The one who can’t move his arms. The girl who can’t sit up. None of them can talk the way other kids can. And we’d be moved back “on track”. I wanted to think through a critique of that.

 

I wanted to talk about ramps and run-ins; to reflect on a great story I heard about dealing with smart-arse strangers who say things to you, with your disabled child. Wanted to ponder travelling the world with a wheelchair. Another great story, about cobbles and Rome and the famoulsy crazy crazy traffic there. To discuss the politics of public versus private schooling, and what happens if you mention a preference for one over the other. (With my Sydney friends, I was used to a very strong pro-public school stance; here in Brisbane, in both schooling and health/ hospitals, there’s a much clearer middle-classes-go-private thing, which doesn’t work for me.) To talk about weight, and bodies, and wheelchairs, the bloody annoying “obesity epidemic” that gets pushed (ahem ahem, choke) down our throats. I was even planning to write about Stephanie Dowrick, who can be so blisteringly annoying - except when she's right - and why I liked her stuff about messiness recently.

But instead, it seems to be memory and sentimentality and parenting that’s becoming a theme. Maybe it’s because I’m reading Ray Bradbury’s Dandelion Wine – which isn’t entirely grabbing me, but as an exploration of memory, and boyhood, and nostalgia, smalltowns and family mythology, it’s certainly interesting. And it has moments of exhilerating deliciousness, like the description of new tennis shoes and why the sound of a lawn mower matters; and the idea that old storytellers and transporting time machines is just lovely. I could almost glimpse Huck Finn around the corner. And a helluva contrast to the other version of family I just read: Christos Tsiolkas’s The Slap, which I could hardly put down and read in about 3 days, giving up opportunities to sleep in the process. Stolen moments between children.

And all this talk of sentimentality and memory, and parents “who are late” (as Mma Ramotswe would put it) means I’m almost looking over my shoulder at yesterday. At Mother’s Day, the ghosts of chrysanthemums and the thought of Ayelet Waldman’s Bad Mother, CrabMommy’s grumpy declarations, and the pleasures of seeing huge and diverse groups of people in the park yesterday. But I’ll turn my head instead, stop craning my neck, and look to the front instead.

 

(Stupid font-changing abilities! Stupid stupid random line breaks!)

On the Untimely End of the Pregnant Bitch

And I'll get to her in just a moment, but first, how's this for a line: "And into this hotel they receive the battered wanderers, the weary sailors, the refugees from ferocious lives . . ." (Sebastian Barry, The Whereabouts of Eneas McNulty, Faber and Faber, 1998, p 282) The refugees from ferocious lives - what a wonderful, poignant, tender, feirce sort of description. It'd be trite to say, "but aren't we all", because we're not. Some have such ferocious lives you wonder how they survive at all. Like those news stories of murder and mayhem, of savage deaths in families, where a 7 year old is spared, quivering under the bed, and they say, "And the girl was unharmed". No no and no, harmed forever.

But that's not the point of this, but rather a line in a novel that in its elegance lifted me out of a blah and hormonal and rather squashed sort of mood. So thank you for that.

And here I am, in a moment of respite, ready to vent or crap on or indulge myself, or retell friends stories, or reduce them to a line or two (the tall elegant friend with Florence Broadhurst lamp and the mind of a scholar; the smoker with wicked sideburns and a bookcase of sideways looks and ex lovers; the Melbournian for whom men always do things and offer up bunches of floweres) and so on. In other words, ready to blog - but what does it mean and who does it hurt? Because over at the Pregnant Bitch, she's taken down her shingle for the moment, because she offended too many friends by being amusing and frank and raw about her responses to them. She said she was sick of making people cry and turning her world upside down.

So, as Gilbert and Sullivan once said, "Here's a pretty how-de-do"!

And although her blog gets right to the heart of the way motherhood is mythologised, and even about how women's lives are made more and more complicated while being judged endlessly, the post that caused the gnashing of teeth was fairly innocuous. It was all about how difficult the stories of "enjoying motherhood" are for her, and that if she lived next door to a particular friend of hers, she'd feel like stabbing herself (etc). Fairly light and amusing, while making a very personal point. So, here's the question: is this any different to any other type of writing/ reading/ expressing an opinion? Does a blog mean we enter into a different audience contract, or not?

Fiction writers have spent years defending their right to plunder other people's lives; at the same time as they debate the ethics of it. Journal writers and diarists have tended to write for themselves, in which case they can be as opinionated as they like . . . except when they don't, or they were writing journals to be read aloud in middle-class victorian drawing rooms; or they were writing personal reflections as public personages, in which case they were part memoir part despatch (and I remember reading the travel diaries of Harold Holt in the National Archives, which combined 1950s protocol with stories of throwing up into his hat when he got off the plane in Rome and made it clear that, while widely known as a Bear of Very Little Brain, that he had a cosmopolitan edge very different to much of 1950s Australia); or they very self-consciously knew they were writing For Posterity. And so, do we edit out bits of blogs, change names, protect our friends or ourselves, or not?

Another reader of Abby the Pregnant Bitch described how she shut down her blog, after offending her in-laws, and started another one anonymously. And I'll confess I'd be mortified if my outlaws read my less-than-generous comments about them. I'd want to qualify it to hell and back, with acknowledgments that they're interesting and clever and with worthy life stories and struggles in the face of adversity but oh please oh please don't let me be stuck in a lift with them. Et cetera. So Abby the Pregnant Bitch is much much braver and more honest than me in not disgguising herself or even holding herself back.

But as another reader said, what and who are you writing for? If it's a personal vent and a bit of space y ou need then hey, why not just keep doing it? But then again, we could all do that on a pile of paper somewhere, that's then filed in the bin; or in a new folder on our computer that we then immediately delete delete delete. And yet we don't.

We marshall our thoughts together and receive our thoughts and angst as our own battered wanderers, refugees from ferocious lives; just as we allow in our mind's luminous dancers and sinuous lovers. And sleeping babes.

Time, Lists, Hair and Sign Language

Oh dear, it's been too long. Surely, like sex, twice a week for blogging isn't too much to ask even if, with both, daily would be better? And clearly I have too many thoughts in my head, and not enough coffee, because so far each sentence has too many commas, too many clauses, not enough clarity and bugger all wit.

But perhaps that's because I'm feeling untethered; as though my forehead is floating ten centimetres above my head. You see, I just dropped Clancy off for his first day at childcare, and it feels odd odd odd. I wasn't ready for it to happen for a few months, but at the same time I was becoming increasingly anxious that I'd be back at work with no childcare organised. So when the director of the centre said hey, we can get him in for one day a week, I had to say yes. And then, here we go, the Disclosure question again, I had to explain MCAD to them while trying not to freak everyone out. Of course, it's not at all as confronting as explaining M's disability, but it's about treading the fine line between asking them to take it seriously, and insisting that really it's all going to be fine and they don't need to be too anxious or fearful.

But I left him there after ten minutes of him beaming at everyone, playing with a stuffed frog, leaning on one elbow on some cushions, and then falling asleep with that look of utter abandon children do so well, with arms flung over head. Then I turned around to see that Morgaine had a scratch down her chin that was gratifying in showing that she's a part of the regular gang, given a swipe by the pipsqueak kid with big hair. And while it's true she can't really defend herself, I'd rather that than her being left in a "safe" corner somewhere. Because my image of horror has become the beanbag: where the "immobiles" are left to moulder. (A rather tactless friend described in detail to me - more than once - how this is what can happen to children with disabilities in institutions. She specialises in statements like this: not in a malevolent way, but often in a way that feels a tad combative. She also said one day, "well, you'll be changing nappies for a long time". Goshdarnit, I'd nevah thoughta that. So anyway, I realised recently that The Beanbag sits inside my head, in its lumpy way, as visual shorthand for institutional neglect. So retro chic belongs to particular decades, for me!)

But hey, it's not all looming symbolism. No, not at all. Had an interesting experience of the black humour of other parents of children with disabilities last week. Still doing the Hanen Method course for children with "delayed" language. My sweet M is clearly the most delayed of the group, not even at the pointing and consistent ("intentional") gestural stage. There are five of us doing the course, but for various reasons there were only three of us there last week, with the two Speechies. Although the course is good, some of it is too much like a comprehension exercise, that's frustrating for those of us used to absorbing and assimilating a lot of information rather quickly, so to my relief the woman leading the course last week was more lateral than the other. She asked us to extrapolate modes of language use from particular scenarios, breaking it down. But she wasn't expecting the extent to which our own circumstances transformed supposed "everyday" experiences into (what?) obstacles. And we'd reached that stage where a collection of people becomes a group with its own grammar and humour and knowledge of each other.

So imagine, she said, that you've gone out to a cafe or restaurant, and your child picks up their bowl of food and throws it into the face of a stranger. How would you feel?

Me: Well, I'd be delighted that she'd ever have the strength to do that!

Comrade 1: I'd be thrilled that he could eat anything at all not made by me and that won't cause a fatal reaction!

Comrade 2: Given that he's fed by a naso-gastric tube, I'd just love it if he could eat normally!

Hmmmm, so we had to behave and admit that if we had a Normal Child we might respond by X, Y or Z. In other words, there was a rather lot of smart-arsery, which can be a relief after the potential for angst and earnestness in these situations. And of course it can be fun to be a bit naughty. But the profound difference between dealing with disability and dealing with "the rest" reminds me of the Ian Dury line about the Walkie Talkies, as his way to distinguish the "regular" world from those proudly Other, like him. The young woman who comes to do some Respite Care with M refers to those who are "Mainstream". (Mind you, she also talks about "disability children" rather than "disabled children" or "children with a disability", so am not sure what I can conclude about the language of this world. And I still think it's funny that she couldn't bring herself to tell me that her 4 am return from a party happened at a "Godless hour". She called it a "goshless hour". I am soooooo not used to people who are conventionally religious. Or in fact as conservative as she is. Twenty years old, and she asked me rather guilelessly - quizzed me, rather - why Abe and I weren't married; whether or not I went to church; if we'd ever get married. She'd never encountered such a thing. So apart from mumbling a few "Feminism 101" responses, and thinking You Really Do Need to Get Out More, it left me pondering just what Respite is "Respite From"? I have to be very careful that I don't find myself locked into spending too much time with other people in this particular world.)

But back to the Hanen Method course. I also wondered about introducing Makaton Signing to Morgaine, as a way to incorporate it into our household use of words and language. It's a system that recognises that "real" sign language is a full system of language; and instead is specifically for those children who are language delayed but who may, hopefully, one day develop spoken language. Key words in a sentence are signed, and only those. I figure that Clancy will speak early (he's showing all indicators), and may as well learn the signs too. The problem, of course, is whether and how much M gets any of the regular gestures, given that waving, pointing and so on are currently beyond her. She does move her arms to indicate pleasure and desire, to show she wants more . . .

Oh blah blah blah.

I need rather more focus and point to it all here.

I think I'm using this blither in order to get my mind in order for the huge no of things I want to get done today: submission to the Therapy Place about the structure of their board, and asking for response to the fact there's no person with a disability on the board, as well as no parent/ carer; submission to the childcare centre about physical access, health and safety and (really) equity; finalise funding application; response to council and local state member about general access in area (crap), and more specifically about new park proposal that doesn't seem to have any principals of disabled access incorporated at all. And so on. Oh yeah, and overdue tax returns. And a million other things. and medical appointments for M and whether she is eligible for a special bed as she has a neuromuscular condition. Phonecalls. Research. Hassling. Hustling. The enduring and ongoing need tobe an Advocate and an Educator, to have more and more Capitalisation in my life.

Whereas it'd be fun to think through writing on memory and madness and pain (I reckon I held my breath through the last three chapters of Sebastian Barry's Secret Scripture); or on hairdressers and camp (a young woman - a teenager - was getting her hair Done with a capital D in the seat next to me on Saturday. Hot rollers and loops of hair pinned up. The hairdresser made some comment about how he loved doing such Glamorous Dos, he used to do it all the time. At another salon, she asked? No, when I was a drag queen, he said. And surely the pisstake opportunities of this truly hideous, OTT, bonkers hair was there for all to see? I would've laughed if I hadn't been gagging on hairspray.

I did some historical research once on hair and its cultural meaning, and read the little magazines of the barbers' unions in Australia in the 1920s. Some great stuff on the shingle and the bob, as well as details of what they'd do before then. Women's long hair, plaited in place, with stray hairs singed out of the way for a smooth look. Whereas the "male" techniques of bobbing and shingling were seen initially as radical, liberating, lightening, setting free the weight of convention and revealing the neck. But the biggest mystery, it seems to me, is the weirdness of bridal hair and "formal" hair, which is lost in its own mad mad mad conventions of ringlets and rolls and sweeps, sprays of flowers and times long long gone.

Snip snip snip; snipe snipe. Time to go, really.

Anticipation, Asylums, Art

I'm almost cross-eyed with tiredness today - which is so boring as to be hardly worth mentioning. I've always found the endless "how are you, exhausted?" style of conversation oppressive: the way it's about work, and parenthood, and balance, and busyness, and perhaps a bit of competitive woe-is-me-ness. And so I tend to deny it (I'm fine I'm fine I'm fine, a new day has dawned Pollyanna). But as I'm sitting here in a mad outfit, hair in a bandana, and baby boy has finally drifted off, I'll admit it.

Still, I see this as a reprieve. I was going to take Morgaine to a Special School playgroup, with some terrific therapy and other possibilities built in, meeting other kids with disabilities, and so on and so on, but got a call to say that they were swimming today . . . and it's impossible to juggle Morgaine, baby Clancy and the risk of drowning all at once. So I said I'd leave it and she's off to childcare instead.

And in about two hours time I need to be off again to the "It Takes Two to Talk" language course.

So, much to anticipate.

But I've been pondering anticipation in a completely different form this week, because I've just read Sebastian Barry's novel a A Long Long Way. The first chapter I found a  little mannered, even though I was instinctively drawn to the story and the characters, and then whoosh, I was swept in and loved it. The writing was more poetic and graceful than other I'd read recently, and he seems to deliberately reverse the use of adjectives to pack more punch. And why anticipation? Because it's a kick-in-the-guts, fuck-you, this is too beautiful and tragic, story of the First World War. It's a longish novel, but I read it very quickly. And then there's little Willie Dunn, our hero, and there are a handful of pages left. Perhaps two chapters. And I'm beginning to note the dates with dread. It's the beginning of 1918, and 11 November is burned into me. So I fear there aren't enough pages left for him to make it to the end of the war. Oh no, Sweet William. So a book whose power made me clench my gut with the feel of it, had me clenching it again with knowing the dates. I remember the same thing happened as I read the truly extraoardinary trilogy by Pat Barker, the Regeneration series. The narrative continued, and in my head the historical narrative tripped along, and I started to notice the date with increasing dread.

But I came to Sebastian Barry through a combination of an Irish friend, and by hearing an iv with him by Ramona Koval on the Book Show on RN, about his new book, The Secret Scripture. A terrific talker. Also good, also powerful, although so far not quite as overwhelmingly immersive as Long Long Way. But the Secret Scripture is centrally about an asylum, a patient, and a psychiatrist trying to make sense of both her life and his own, and Irish history at the same time. Which made me think about psychiatrists, and of course psychiatry, memory, trauma, storytelling, poetry and all that is right at the heart of Pat Barker's Regeneration Series. And then there's also Margaret Atwood's Alias Grace, which also has a psychiatrist, an asylum, crime and femininity, and a sly poke at our expectations about heroines, narrative, veracity and guilt smack in the middle of it. And then for a local flavour, I remember the impact of historian Stephen Garton's work on Medicine and Madness  when I first read it. And so much of all that is also about gender. (Well, derr . . .)

I didn't realise I had so much incarceration on my bookshelves.

Although the other thing I liked about Barry's A Long Long Way, is that it gave me a different take on the Easter Uprising. I thought I'd approached that in an even-handed way in the past, but even the ambivalent versions of it, those that allowed doubt and pain and violence to creep in, still had an heroic edge to them. Like the exhilerating Roddy Doyle novel, A Star Called Henry - not at all like his Barrytown series; and allowing for the mythic and the everyday and the doubt to all be combined. Although I also remember it because of sitting in a pub in Newtown with a rather political firefighter who I rather fancied at the time - yes yes, years before meeting Abe - and we got rather shitfaced together, talked about Irish history and rebellion and writing, and in a slip of confusion I went home with his 20-something friend. Hmmmmm, how did that story get in here?

But anyway, Sebastian Barry's Long Long Way shows how confusing and divisive and heartbreaking the whole thing could be, and included the rare perspective of Irishmen who'd gone off to serve with the British army.

And like so much "so-called fiction", it shivered down into the present, with the events of this week. The Real IRA and the death of soldiers in Northern Ireland.

All of which puts my little concerns into a helluva perspective, so I don't think I'll bother going into detail on:

- the difficulties of disclosure. Went along to a parents group thing at Childcare, which meant hassling once again about physical access to the centre, the need for a proper turning circle and ramp and door etc, all of which I'm completely fine and calm and directed about. But instead, having to say to a group of strangers "my dughter has a disability" meant that my voice wobbled and cracked and shook and I FUCKING HATE THAT. Feel so exposed and wobbly, or Wallaby as lovely Dezzy says, that I start to loath myself.

- the spectre of yet more STUFF. We were rejected for charity-funding for the next bit of equipment we need, and it's going to be a standing frame thingy. I've seen a version with giant wheels, that could make life for Morgaine easier, or could be over-egging-the-pudding (and beating a mixed metaphor to death with a tire rather than a whisk) and could be logistically rather tricky. Dunno.

- the reality-check of Clancy's condition and the whole metabolic disorder thing. He's a little livewire charmer, doing extremely well, and went to have the checkup with the specialist yesterday. And we all agreed he was doing v well, but then I realised that good management of MCAD aside, there WILL BE a crisis at some point. (Is it really inevitable, I asked? Oh yes, they said, and weren't overly worried about that.) But hey, we're talking hospitalisation and rushing around with heart in mouth. So as the NZ-born actress once married to Rod Stewart said in a long-ago shampoo ad (how do these things lodge ourselves in our brain, whereas the complexities of superannuation management dont'?), "It Won't Heppen Overnight But It Will Heppen". So, brace yourself, girlie.

- and I could whinge about having a sore back and cracked-feeling ribs . . . no, that's too too dull.

- and then there's the whole relationships-and-negotiating stress, which we did incredibly badly last week, and then did rather well on the weekend. So no need to put THAT in writing, thank you very much.

- and of course there's the all-consuming fact I have completely mad hair at the moment, and no idea when I'll be able to get it cut and coloured (and yes, persist in defying and denying ageing - bugger the going grey gracefully malarchy).

Sparkiness & Reading a Slave Narrative

Of course, now I feel guilty for talking about Morgaine and intellectual disability, because she's been the epitome of sparky inquisitiveness today. Interested in things. Laughing as she bangs two balls together; and I dismantled a plastic keyboard thing and lay it on the ground so she could reach it easily while lying, and she was batting and banging away at it, taking great pleasure in the sound. Music and rhythm is so important, I'll have to find some way of doing more of that.

And Clancy - although still a 12 week old limpet - is hilarious. He coos and squeaks and squawks and responds and also does big open-mouthed smiles into my face.

It'll be interesting to see what happens with a 12 week long language development course Abe and I need to do to help M with her language delay. It's following the Toronto "Hanen Method", and the program we'll be doing is explcitly holistic/ family centred: but trying to work out the logistics of how the hell we do it, both of us, supposedely without children in tow, is doing my head in. I suspect in the end I'll do it one evening a week while Abe stays home with the babies; or else I'll do it with Clancy balanced in my lap and sucking away, which would be a bit hard on him. Pay attention and let me think, take notes, be active and apply all this, for 3 months. Hmmmm.

But given it's about carefully applying skills re learning to speak, there's a good chance it'll accelerate his language skills, while we try to bring along M's. So perhaps perhaps perhaps they'll learn to speak at the same time?

Because words, and language, of course open up entire words for us. I can still remember being so utterly immersed in library books as a child, that I'd often finsih part of the allocation before I'd even made it home: 4 hard covers plus 4 paperbacks or magazines, and I'd sit in the sun on the lounge out the frontn of the library, and read two or three books I'd borrowed, and have to go back in to return them and find some more, with surprisingly liberal librarians. They didn't object to a polymath, etc.

And now, in between children and breastfeeding and phonecalls and organising and all the rest, am rereading Lawrence Hill's Someone Knows My Name - which I first read only a week ago - and the power of language and knowledge is just one part of this terrific, devastating, slave narrative. (I must find out more about him - I believe there's an interesting personal story of activism etc in Canada.) It tells a life story, and while she is almost too good to be true, given the way in which the history is intertwined, and the horrifying reality of what was done to people, a fine complex "fuck you" heroine works for me. This one's fictional, but it's based on real slave narratives - and is completely engrossing. I read it in a rush over 2 or  3 nights, and the historical explanatory prologue is just as engaging as the rest. Although it's also unbrearable, of course.

But there's nothing like it for a sense of perspective. And as happened with the Stolen Generations here, it has stories of children ripped from their parents that makes me, huh, both weep and need to stop, right now, and see what that little sound means. Hard to express without sounding mawkish; and of course the marker of suffering is NOT NOT NOT about the impact thinking about any of this has on me. If I had time, I'd work out how to express that properly.

Being Scatty and/or Being Disciplined

I'm not a fan of feeling scatty or distracted or half done - as I have a history of being a person who gets things done, fulfils cliches of "multi-tasking", has a habit of being an over-achiever, and gets the details right. So I know I'll need new ways of doing things in this brave new holy-shit-I-have-two-children-now world. This means grabbing opportunities when I can. Like now. Clancy asleep on Abe's chest; Morgaine dressed and washed and playing on the floor; only about 82 un-answered emails. A huge list of things to do. Half-written notes everywhere. Piles O crap on floor of loungeroom. Keen to get to an exhibition today; want to get outside and get some exercise; would love to finish making the fabled "little room" sensory play area; wonder about what still needs to be done for Christmas; would rather like to soak some  more fruit in brandy for a Christmas cake; need to work out Skype; damn, what about doing my tax; oh yes, and even had a conversation last night about turning bits of PhD into articles or book. Yeah, right. Perhaps I should just add "remember to floss" at top of list, and see if I can get through a week of doing that.

Yesterday I read an article about Toni Morrison (no no no, am not even dreaming of comparing myself to her), where as a single mother, working as an editor at Random House, she awoke at 4.30 each day to write. Now, that's what a person needs to do. And although there are myriad things I can't get done at the moment, which drives me slightly demented, I can at least read. The one thing I do have going for me is enforced time sitting on a lounge with a small boy in my lap, breastfeeding. From there, I get to survey the room and see bits of spilt milk, sprays of breasstmilk turning to cheese, toys, books, magazines, and huge piles of expectations, deadlines, obligations, guilt, activities, pleasure, magazines, reviews, relationships, love and every other damn thing, spilling over ontop of each other. So anyway, I can see all that and balance a book in the other hand: so am finally rereading Toni Morrison's Beloved, which I've long had on my list of "best books of all time", but have never actually re-read. Too blown away by that first experience, many many years ago. Living in Annandale, in Sydney, in a share house. It was winter, because I remember being almost frozen into position, lying on the floor, transfixed by this story of slavery and violence and grief and anger and joy. And I remember a details of the burnt bottom of bread, and a gravestone, and a tiny throat being cut. So heartbreaking and beautiful and poetic and political, all at once. So I hope I like it still. I remember being fearful of rereading Marquez's Hundred Years of Solitude for similar reasons: such an intense reading experience, what if I didn't get it the second time around?

And finally read Helen Garner's Joe Cinque's Consolation, after avoiding her for a number of years. I used to love her fiction, then moved away at about the time of The First Stone, then finally read this one. I could hardly put it down. A story of grief and mourning and memory and justice. One friend saw it as a story of competing types of feminism, which I didn't (Anu Singh as a feminist? nope); but the grief caem screaming through.

But maybe that's about the way in which I'm feeling haunted by death and its promises at the moment.

I'm not as destroyed or cowed by it as I have been in the past - after Dad died, after my sister died, after Mum died - so instead it's been more integrated, more about mourning and memory and aftermath.

Although at the same time, these experiences with Morgaine and now Clancy, are heightened because of the dog's head presence of death in the room. When M was so small and we thought she wouldn't live past two - that changed everything. It made every bit of time since then, when we got the reprieve, it has made it all bearable and hopeful and full of the sharp vivid taste of life and potential and hope. And now this, with Clancy's metabolic condition - MCAD. It means he's a perfectly fine happy healthy normal baby, until and unless something goes wrong, and he's not. (Tragically, there are many stories of these deaths online, and they're thre strategically: to make a case, eg in the US, for universal neonatal testing. In Australia, all babies are tested for this and about 30 other conditions; in the US, that's not the case, so parents are lobbying.) So something can't go wrong. It can't. We can't let it. But just as everyone knows how to creep in and check the sweet puffs of a baby's breath sometimes, we have that heightened awareness. The "forever vigilant" part of our lives that has to become unwavering second nature, unti lhe's old enough to make it part of his own second nature, and his own decisions about risk. Damn, risk, that's going to be a lesson in parental self-control - how not to be a nagging nightmare. Meanwhile, I can never forget my watch. I can never ignore a little alarm that goes off and tells me to feed him. Can never think, oh, yeah, he'll be fine don't worry about it. Hospitals and emergency departments and specialists and drips and consultations and rattling off the acronyms and diagnoses and genetic implications. When not 5 weeks ago we didn't know any of this.

Clancy was born five weeks ago today. And in the first 4 days before the heel prick test came back, other babies in the same circumstances have died. Impossible impossible impossible.

All of this points to our decision for the day: time to head off to see a new contemporary art exhibition, "Optimism". Not blind optimism; not naive optimism; just optimism.