Ramping It Up: Children w disabilities, opinions, books

Writer in Residence at a Hospital

I'm no great fan of Alain de Botton, but when I heard him on the radio reading from his recent work that came from being a writer in residence at an airport, yes I was inspired. It wasn't the writing, so much as the idea. At an airport, of course, he got to see it all: drama, passion, reunions, farewells, lost luggage, bad behaviour, exemplary behaviour, all sorts of cultures and nationalities - and, perhaps, architecture and a space that's sometimes stateless sometimes all about citizenship, sometimes cozy sometimes cold, and frequently defined by ridiculously expensive mediocre coffee. But the thing that got me, was the idea of institutions and writers in residence.

Where else could you have writers in residence, and what would their stories be?

Of course, lost of institutions have already done this. Libraries. Schools. Prisons. Art Galleries. Universities. But imagine what would happen if you kept expanding it. Imagine the skills required: not just to write, but to listen, to elicit, to empathise, and maybe to confront. Writer in residence at a funeral home. Writer in residence at a laundromat. At a hardware store. At one of those dreadful baby shops full of cute furniture and anxious new parents. At a shoeshop. At an aged care facility. At a petrol station and roadhouse in the middle of nowhere.

At a hospital. At a children's hospital.

It's not news that hospitals are full of dramas. ER. All Saints. Scrubs. General Hospital. Grey's Anatomy. But the delicacy of telling the real stories and being a writer whose job it is to gather those stories? How would you do it? And how on earth would you do it ethically? I can imagine the writer sitting for days by a bedside, needing to be part of the action, needing to feel the energy and flows and stories that swirl around. Feeling the anxiety and tears and warmth.

Because, OMG as they say, the stories.

Morgaine has been out of hospital now since 26 July. Not quite two months. And I've been off work on LWOP for most of that time - which seems odd, given that after the crazy six months of endless hospital admissions, she's fine now. For the moment. It's increased my anxiety and guilt in some ways, rather than lessened it, as I feel that I'm waiting for the next crisis. It may happen next week, or it may not happen until next year. Stasis. Limbo. But time to reflect.

Time to remember some of those many many hospital stays - and the people, and their stories. There was one particularly intense ten or twelve day period, when M was admitted under the neurology team, because as well as her usual respiratory distress, she'd had seizures as well. So we were in a different ward. The room wasn't particularly big, but there were six beds, and six recliner-chairs for the parents. All in a row, all right next to each other, with a strange intimacy and a carefully practiced set of rituals around listening and not-listening. We all made an effort to let the others be private, but were also ready to leap in when required. We couldn't help but know each other's stories.

The small boy in the next bed had a terminal cancer and a set of zippered-looking scars all over his head. They were on holidays from interstate, when he suddenly got very sick. The parents were delighted with the care and treatment he received at this hospital, the progress made, but there was an undercurrent between them. The father was utterly dedicated to his son, with an air of zealousness that I suspect we all get when our children have complex health problems and no easy answers. He'd latched onto an alternative food regime that he was convinced of, that meant this child was being fed only protein. Nothing else. The father made up all his food, and the mother was weary and resigned. The doctor's didn't think it was a good idea, and I don't think she did either. And the little boy was offered some toast one day, by one of the wardies, and the poor child was delighted. It was taken off him. Those wardies are the ones you might follow, if you were the writer in residence, as their everyday activities create the connections between people. Emptying the bins, collecting the trays, endlessly mopping the floors and saying hello to the crumpled, stiff necked, parents, and the wide-eyed children.

Across in the next corner was a 15 year old girl who'd had major brain surgery, and was peg fed. Her mother was constantly on call and never seemed able to even take a deep breath on her own. If she walked to the corner to rinse out the attachment for feeding, the girl would start calling out, anxious and demanding, peevish, annoyed. Where were you where were you I can't see you. Both had masses of dark wavy hair, but the girl's was shaved on one side. That woman was doing it tough. One day she called her ex, to explain yet more surgery, another procedure, another in a long list of dramas, and as we all pretended or tried to close our ears, there was clearly a complete meltdown going down on the other end of the phone, of the Why Didn't You tell Me I have a Right to Know. Just calm down, she kept saying, let me tell you, it happened so fast, just calm down. And on and on and on. She was curled in on herself, her and her child, didn't really speak to anyone else, and had a pretective air. She seemed so private I didn't speak to her when we finally left, a week later or however long it was, and then there she was, standing up in the corner, waving, wishing us all the best.

And right in the middle of another night, a thin woman came in from the Intensive Care Unit, with her 9 month old baby connected to more tubes and wires and shunts and ivs than I've ever seen. They had had to lift off the entire top of his skull, and cut open the bones which were fused together, not allowing space for his brain to grow. He had a helmet of bandages that made his head seem huge, and his eyes were black and swollen. She was breastfeeding him, and all he wanted was to be held, to feed, to be given pain relief. Her husband and two sons came down with a horrible flu and couldn't come in to see her, and they were from hundreds of kms away, staying in hospital accommodation. Then, within a day or two, this fragile child sat up, smiled, looked around, was ready to play.

Directly opposite, was a young Samoan girl, only about ten years old but looking older, which meant everyone thought she was able to cope more than she could. Her leg had been broken and reset with pins, and was now encased in a series of metal halos and wires, that meant she had to go through many complicated manouvres to get in and out of bed. To be hoisted into a wheelchair. To try to go to the loo. How do I put my undies on, she said to the nurses? A conversation about sewing and velcro ensued, and whether her nanna could maybe fix that for her. A young and utterly gorgeous mother, with another little baby, in and out by her bedside. Lots of visitors and laughing aunties and grandmothers. Then they all went out one night, and took longer to come back than she expected. Sobbing from her bed. I've never been on my own before, she said. So I called them up on my mobile, to find out where they were and when they'd be back. They thought I was a nurse so there was lots of confusion, and of course we were all best friends after that.

And in the other corner? A young Aboriginal woman with a tiny beautiful baby who was having breathing problems. Her team was by her side - literally her team, a whole group of young women in uniforms, with the Aboriginal flag and an air or protectiveness. Stories of custody and access. Lots of laughing. Conspiratorial intense phonecalls. Someone wasn't going to be let into the bedside.

Everyone offered each other fruit, or leftover sandwiches. Magazines full of mind-numbingly tedious glamourpusses in red dresses and push-up bras. I'm going down to the cafe do you want anything. Keeping track of the many teams of doctors who flitted in and out, never leaving any clear sign that they'd ever been there.

And sleeping in a reclining chair that doesn't quite recline properly, with a foot jammed against the bottom to stop yourself being concertina'd back like a cartoon cat in a booby-trapped house. Cameraderie and strangeness.

Then the boy with the protein was able to go home, and another woman came in. She had the final space, right next to the bin and the front door. There were visitors everywhere, and chaos. My girl was moaning a lot, less than a metre from her child'd bed. She rejected any overtures of friendliness. Her daughter had fallen off a piece of playground equipment and broke her arm - awful, of course, and distressing, but if there's a heirarchy of these things, it didn't really compare to the brain surgeries and terminal illnesses and touch-and-go situation of the rest of the room.

This woman looked around.

But We Are Private Patients, Don't We Get a Private Room?

This is a public hospital, m'dear, said the formidable nurse. In these situations, they're all Formidable. Beds are allocated according to need.

Her body language froze with distaste, and she then spent an entire night listening to my girl moan unhappily (a sure sign she was getting better, but not that much fun for everyone else), with lights flashing in her face from the nurse's station, and with the tap going off and on as everyone paid attention to best handwashing practices. Part of me wanted to laugh - this woman was getting the Public Hospital from Hell experience, just as she expected.

So if I was writer in residence for that ward, that'd be the comic relief.

Being a test case: Paediatricians, hospitals, and a Dysmorphic Appearance

Early last week, in an oddly calm moment, I went for a walk with Miz M to a nearby cafe, and counted up this year's hospital visits from my diary. Fifty one days over six admissions, including eleven days in Intensive Care. I didn't bother counting up the outpatient appointments, the visits to pick up equipment, the therapy appointments. Neither did I count the number of books I'd read at the bedside, the number of days of work I'd missed, the amount of guilt I'd dished up for myself, the number of nurses I'd spoken to, the posses of doctors I'd met, the emails I'd sent to friend. The number of times Clancy had wondered where I was, and where his sister had disappeared to. The litres of oxygen she'd been given.

The number of months that might be left in her little life.

Some things, even with a little red Moleskine diary, can't be easily quantified.

But I did the adding up the day after she last came out of hospital. Another twelve days in, including five days in Intensive Care. This, only two weeks after the last almost identical admission.

And then, being a sucker for punishment, five days later I was back there, voluntarily, spending a morning with Miz M being an examination subject for paediatric registrars who are on their way to being consultants. I knew the drill. For the last six months, whenever we've been on a ward, doctors pop in to ask if they can use her as a test case, for their practice. They scour admissions, looking for "interesting" cases. Oh, to be boring. What they want is the not easily categorised, the tricky, the multiple disabilities, the chronic and acute, the odd ones out. I've done many a "long case", which means I talk talk talk about the pregnancy the birth the early days; the signs something was "not quite right"; the tests, the lack of a diagnosis, the speculative diagnosis, the clinical presentations, the other tests, the waiting for results, the next tests, the referrals the therapy the eventual maybe that's a diagnosis. Then, after you're parched from talking and each and every one has said, "oh, do you have a medical background" (no, bugger off, I just pay attention in class), then they finally examine my girl. They then go off to write it up and present her to a panel. The good ones ask you new questions; the good ones give you something to think about. It was in this context I was first asked if we'd thought through our decisions on resuscitation. It's in this context they ask you about depression and your relationship and what next. 

Somewhere, I imagine a group of examiners rolling their eyes. Here's Morgaine again. Haven't we already heard her story 8, ten, twelve times already?

And then there are the "short cases", in which the parent or carer is invisible - no context here, no storytelling, no asking questions - and it's "only" about examining the child. She usually lifts up her hand in her languid, soft way, and rests it on their hand or their stethoscope. Gives them a little pat. Giggles when they try to get her to follow a toy with her eyes.

And I figure it's a pay-off. It's a public hospital, they treat us very well, why not do what you can?

And I figure it's strategic. This way, they know her. This way, we might learn something.

So when they asked if we'd do a "real" exam with her, we said yes. When I say we, Abe rolled his eyes at the idea of another morning in the hospital, so I said I'd go.

And there we all were. Yet another community you never thought you'd be a part of. A group of people who may very well look Peculiar with a capital P to outsiders. Children with rare and unusual conditions, looking "different", requiring all sorts of aids and equipment, sitting around on chairs that are too small on a Saturday morning. I meet yet another woman who's on her own, and has had to leave her job, and who's coping with a child who has rages that last for an hour and a half. Who has what they call "challenging" behaviour. I meet a very poised girl of about twelve or thirteen, who seems relaxed about being examined and poked and prodded and asked questions about herself. A small boy who looks partly melted - not from burns, but rather as if while growing something simply slipped. He's a wizz on the computer, and uses makaton signs to signal his pleasure to everyone. Miz M just smiles happily.

We're on for a short case and, after a month or two in which we'd had our meeting and made our decisions about resuscitation etc; in a week in which we'd met with the non-cancer Palliative Care team, and acknowledged that what she has is a "Life Limiting Condition" (a new phrase for me, and oddly precise - not terminal, not in decline, but definitely "Life Limiting" given we don't know when the ultimate crisis will hit); in a time like that you think nothing else can be confronting. What's to think about?

But of course, a group of new doctors will examine her. Clinically. Of course. And I will keep it zipped, apart from saying, "she can roll" when I put her on the bed (oy, so don't let her fall of, right!); while they will hold forth and give their pronouncements. 

Here is a three year old girl, they say, who cannot walk. Examine her legs, from a neurological perspective, and give your findings.

Gawd: those poor people were so very very very nervous. Bells rang. There were masses of junior doctors around the place to help (and I recognised about 90% of them from the Emergency Dept and various ward rounds), and we had a Group of Three examiners, who put these doctors through their paces. As well as the usual range of tests and reflexes (none!), they all talked about her Dysmorphic Appearance. And here we have the confronting bit. Our usual doctors had been a bit shy about this. The neurologist suggested it; our regular paediatrician poo-poohed the idea. But there were four new doctors, and three examiners, all commenting on her "dysmorphic appearance".

Am I being too technical here? It means Funny Looking.

Apparently, when children are first born, doctors and nurses used to sometimes write "FLK" on the charts. It meant, Funny Looking Kid - because some conditions, especially chromosomal abnormalities, really do have distinct looks about them. (The most well-known, of course, Down Syndrome.) But just in case, they have a quick look at the parents, and sometimes they'd write "FLK/ KLM": Funny Looking Mother. Look no further. I gather this practice is now frowned upon. Hence, the Dysmorphic Appearance.

So. Her large head; the shape of her large beautiful blue eyes; the position of her ears; the space between her eyes. Another also suggested that her face wasn't as mobile as it might be - certainly, she smiles sweetly, but it is true she doesn't express the same range of emotions as her little brother, who has the toddler's tendency to Emote like Laurence Olivier at every turn. So every doctor had something to say about her look - although they also had a range of suggestions for what her condition might be and how you'd test for it and what you'd do next. As well as the hypotonic CP, they all suggested genetic caryotyping, which is only just happening for us now (no results yet), so clearly there are a few chromosomal disorders they have in mind. And only one who I think was way off the mark.

Interestingly, the last woman was the most nervous - which is saying something. You could have run a small car off the energy being generated in the department that morning. She was also the most dithery in her manner and presentation. And this is where I don't know whether my PC-antenna had been too finely tuned, but I got a distinct sense of impatience from one of the examiners, as soon as this woman walked in the room. Immediately. Was it the headscarf, the muslim attire, the long robes? I hope I was being overly sensitive.

And so I took my beautiful little FLK back home.

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.

Hormones, uncertainty, work and friends

Blogging is like exercise - you stop, and then it's hard to get back into it properly. The intoxicating smell of sweat just smells like sweat. Can't find the hand-wraps. Don't want to write a whinge-post. It's too hot to get the heart rate up. Your observations seem lame. Every time you put on the t-shirt and cotton pants, a child wakes up and needs something. And. So. Boringly. On.

And like the warm-up stretches, the burn-out kicks and combinations you need to get started kickboxing, the blog begins with a warm-up series of apologies, excuses, guilt, and a quick one-two to your own head. Ah, the sporting analogy: I shoulda been a politician. Erk, no, the old "fit for office" crap of Howard-the-daily-walker, Abbott-in-his-cossies, Turnbull-skipping-with-his-wit or Rudd-stretching-his-piousness-to-the-limit makes me want to gag. Although the way they're all turning to religion is getting up my nose even more. Sure, watching the sectarian politics of the 1950s through the prism of history is interesting; hearing Sebastian Barry talking about the drama and tragedy of families divided by it in Ireland is utterly entrancing, although that could just be him; seeing the occasional Druid striding through the Parliament of Religions on the news is hilarious . . . but in a Prime Minister? Leader of the opposition? New Premier of NSW? Bugger off.

But, as it's the time of year when lipstick slides off your face and I find myself, mid conversation, distracted by the line of sweat moving down the back of my lef and dripping off my calf - then of course, I'm more than a little distracted by Christmas, logisitics, going to the Post Office, soaking fruit for Chrissie cakes, and by the enduring myth that things wind down at the end of the year. Instead, things ramp up. Deadlines loom. People I'm trying to line up for work become more and more elusive. And I try desparately hard not to be rattled by not knowing exactly what I'll be doing for work next year. Each week, for the last 6 weeks, I've had a conversation about how we've almost-sorta-kinda-nailed down the exact job. Can't complain, even, as I do have an ongoing position in a wildly interesting cultural organisation, surrounded by clever, sparky, opinionated, good people. But detail detail detail. And I've tried so damn hard to be flexible and accommodating and understanding and to proclaim to all and sundry that I'm Fine With That that I have, as usual, been in denial about the impact of uncertainty.

In other words, while making fruitcake, have been behaving, behind the scenes, like a bit of a fruitcake myself.

What Abe would call, in his gorgeously matter-of-fact medical manner, "emotionally labile".

Which is another reason to avoid blogging, because the world needs more whingers like it needs an unresolved, messy, disorganised, Climate Change Summit. Oh, that's right . . .

And on the subject of denial, I'm not prepared to blame feeling occasionally wobbly on my life. But I'm quite happy to blame hormones - while reserving the right to slag off biological determinists left, right, and centre. (Ah, the pleasure of contradiction.) But really, have been on the mini-pill for the last six months, and I never respond that well to fake hormones. I remember being on the capital-P pill when I was 18,19, 20 and it left me feeling all over the place. Not logically depressed, because let's face it there are logical reasons to be depressed, about everything from sexism and inequality to being broken hearted or whatever. And then there are the times it feels bit unhinged and cwazy. And I'm not prepared to be depressed about having a daughter with a disability because really and truly and ruly I don't find that depressing. Oh ok, I do get a little wistful and pissed off in children's playgrounds when there's nothing she can play on, when inclusiveness seems deliberately mitigated against, when the social-medical-financial-cultural systems seem so damn unhelpful, but on a personal level? Nuh. So, time to rethink the whole contraception thing.

Might be time to "get me tubes tied", which instantly catapults me into childhood, overhearing mysterious conversations between mum and her friends. Mum was in her early-mid-40s, just like me, when she went to the family doctor to talk about getting her tubes tied. Unlike me, at exactly the same age she already had seven children. Seven. Did I say seven? More than six but less than eight. More than my two, that's for sure. I was one of the Small Fry, as we were called, the babies. So the doctor looked at her and said, "Mother, but you're a young woman!" Did I say seven? Bloody hell.

(And yes, I know vasectomy is another good option, but poor Abe has been both done and undone, so his Bits deserve a break.)

And when you're 17, 25, 32, and you're obsessed with not getting pregnant; then you're 40, and obsessed with getting pregnant, it can seem endless. This thinking about ovulation. Conception. Terminations. Pregnancy.

Which leads me, of course, to my usual thinking too much into the future. Thinking about my girl, and her life, and her future, and what her relationship to her own body will be. What autonomy she'll have. I was listening just this week to a terribly moving radio doco about disability and sexuality. About the need and pleasure in being touched. And of course, I don't want to be weird about this, as Morgaine isn't even three, and I'm not launching into sexualising her, but they are big, important, issues. She's a very affectionate, physical wee girl. This morning, I popped her into our bed, and she loved the feel of the sheets and being in a different space. She kicked her legs and wiggled on her back. She rolled over to look me in the face. I traced my finger down her nose and across her jawline, which made her giggle like mad. At this age, as a child, she can easily get all the affection and physical warmth she likes. What happens when she's an adult? How long will we still be around to easily hold her hand and let her stroke our arms as we talk to her?

Because in my darker moments, I worry about her vulnerability. Of course. That's the thing about her condition. She has - and I was just reading one of the supporting documents we have - "severe weakness from birth". She will "require ongoing hands on support for all activities of daily life" forever. Which means she can accept your help, but she can't tell you to go away. When Clancy sinks his teeth into her soft buttery skin, as he's taken to lately, she can't push him away or make him stop. She can make a noise, but she can't make that all important sound, that feminist tool, that intervention, that statement of self: she can't say, "No!"

Will she ever be able to? That's what we have to work on. Communication, if not speech. And after trying and absorbing the Hanen Method, thinking about (but not properly applying) Makaton, we're now moving intoa picture recognition system, that will require a lot of intensive work. Of course, it's likely that what will work will be a combination of all these things.

And my hope rises, yet again, as I hear M making different types of sounds. They're Almost Consonents. This is a new category of sound I'd never been attuned to before, the Almost Consonent. Gradations. Her vowels are well and truly there, but the mouth control that goes into consonents are lacking. And so I hear what could almost-kinda-maybe be an M. A glotal stop that could be moving towards a G. Well, at least we're not native speakers of the Click Language. (I really did meet someone once, who spoke that language. She was here for a conference on rivers and land and the meaning of place - or was it of deserts or mountains? - and she explained her conneciton to that place in her own language, before translating it for us. Magic. One of those moments when a person speaks with their face and whole body.)

And oddly, there are no sounds but the whirr of a fan; the ka-thunk of building work next door; and that endless nagging of crows. Because Clancy decided to fall asleep just as I had managed to get all the Christmas presents bundled up and ready to post off; and M's respite carer is here, and has exhausted her with some four-point-kneeling over a footstool (which, given the effort she has to make to raise her head even a little bit, even when you're holding her forehead, is fair enough). So my biggest complaint of the last 2 months has been answered (can I not get two-and-a-half-minutes of uninterrupted time to do something, anything??)

And meanwhile, in the last very little while, an email came in confirming what I'd be doing next year. It means a change of focus, and bigger ideas, sustained ideas, meatier research. Which is great, but I need that reflective space to find and pursue and pitch some of those ideas. All at two-and-a-half-days per week. Time to turn into Eddie from Absolutely Fabulous: Ideas ideas ideas, sweeetie! Ooooh, look, Bolly.

And so, with the bubbles, the attention returns to Christmas. Which, as an atheist, is a completely family-and-friends celebration thing for me, which I do enjoy. I don't mind creating our own rituals, either, even if they are secular. Hell, especially if they're secular. But part of that tradition, for me, is noise and chaos, endless cooking, and going to the beach in the afternoon. Lots of sisters and neices and nephews. But this year, for the first time ever, it's "just us". Helllooooooo Nuclear Family, oh where did your picket fence go, et cetera. Which is a little disconcerting. So I'm trying to remember all the things that exasperate me about a noisy, chaotic, huge, messy Christmas, as there's no excuse not to do the things that just don't work with a huge gathering of coeliacs and vegetarians and 14 year olds and 9 yr olds and 50 year old brother in law who tells the same stories every single year. So I dream of elegant, funky, warm, delicious, relaxing, energising, fun, memorable (ie completely impossible) days of wine and roses. Huh!

But at least I've baked a damn Christmas cake. Gluten free and soaked in brandy. A ring of almonds on top that isn't too wonky.

The ritually flustered and stressful visit to the post office, of course, has yet to happen.

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.

Then they look at you dewy-eyed and say, "You're a GOOD mother" . . . and I think of ten sardonic responses in 5 seconds

First, to get a few things off my chest: I just went to my first ever "singing-and-rhyming for under twos" in the local library, and on the whole, bloody hell, what a bunch of uptight first time mothers. Sheesh. Clancy was loving it, and wanted to meet everybody and wander around and be social and crawl on top of other kids and be generally thrilled. Which, I thought, was the point of the whole thing. Or not, apparently. Every other child was a bit younger, was not so mobile, and was resolutely clamped on a parent's lap (I say parents, hopefully, but ok ok it was all mothers), with some of them looking alarmed as he got too close. Which made me not at all willing to be social. Except for the woman with the v small bub up the back, who I'd seen around, and who had an indy look about her rather than a glossy blond-bob look about her (oh bugger off, yes I am prejudiced), and we had a rather nice chat at the end.

Also, I was once again on a mission to try to find something that I coudl use for Morgaine to sit in and interact with other kids in parks and backyards. A small, folding, beach chair with a tilt or various positions for the back, to which I could attach chest straps and head support. Is that too much to ask? Yes, apparently. SO in the process I found myself looking at various websites for specialist disability equipment, all of which was hideously expensive (ie $500 and more, mostly a lot more); and then also found myself looking at a no of different Cerebral Palsy sites, given that her PVL is a type of hypotonic CP. Well. That made me feel flat and depressed as well. (Also powerful, but a tad depressing, was the Access Economics analysis of CP, which talked about the economic impact as well as setting out life expectancy etc in a rather flat way.) First, many of them ignored hypotonic CP altogether, as if it didn't exist; and then I chanced upon other, properly referenced material, that said her style of CP represented 2% or less, especially at the severe end, which made me question AGAIN the defensiveness of the woman from the CP League who got all snippy with me when I suggested that, as it was the rarer form, their services might be on the whole directed to the other type of CP. At which point she rather condescendingly said that while it might be new to me it wasn't really unusual for them and (subtext) I didn't know at all what I was talking about. Well, I know stats are often misused, but a 2% incidence of something would suggest rare; and given the gradations of severity, and that M is clearly in the "profound" category, why the fuck was she so unhelpful and forbidding?

I raised this, broadly, as an issue with the paediatrician recently, when talking to her about access to services. I put it more politely, and tried to frame it in terms of gatekeeping, resources, information and transparency. All of which was rather over-egging if not over-intellectualising the disability pudding (as it were), as she said: "Oh, yeah, the Bitch on the Switch!" Hah.

So too much time online, looking at disability stuff, left me feeling a bit flat. Going to the library with the little energiser buddy raised them, slightly, as long as I was in a bubble that didn't require any "bonding" with other parents. Then headed off into the park where I bumped into a woman whose son also went to the Special School playgroup with Miz M. A story there, I suspect: I gather she has a pretty tough life, her son spends some of the time in foster care, and he generally looks at the adult world in a completely freaked-out way. Still, she and her son were having a v nice time on the swings.

But but but, I can't complain. I'm back at work, and it's terrific. Ideas, deadlines, collegiality, lots to do, creative possibilities, and the usual dilemma of wondering how far to just do what I do, and how much to change things, give challenging feedback, do extra and so on.

Also, have a challenging and interesting opportunity to submit a historical article to a scarily impressive OS journal. I need time to immerse myself in it, and Clancy having a 20 minute sleep (now) isn't it. Still, it adds to the froth and bubble of life.

In other words: mustn't grumble.

Oh, go on.

So, I keep returning to something that happened a few weeks ago, trying to decipher what it means, whether it's about identity politics or defensiveness, whether it's a feminist issue or simply one of over-reaction. Some old friends of Abe were in town, for an international HIV/Aids conference. Three visiting doctors, one from NZ, two from Sydney (a couple). The woman in the couple does academic research, and they have a newish child, too, who wasn't with them. Although it's not my area, I find the whole area of health policy pretty interesting, and have followed it for various work projects in the past; and of course Abe and I talk about it as well. So we were talking about that, and it ranged far and wide. We were also talking about related areas of health and hospitals, diagnosis and medicine, cultural practices and the drama of medical interactions - especially given some of the stuff Abe and I have had to negotiate recently.

But in the course of talking about observations I'd made in the Paediatric Intensive Care Unit, the NZ doctor said to me, "So, were you a nurse?" Hmmm, why did she say that? No, I said, I'm talking about what I saw with Miz M as a patient. But what, I wondered, did that say about heirarchies and gender, professionalism and (even) being seen as "partner of" Abe? There was also that use of the past tense, given Clancy's age, which puts all of those questions of work-based identity into an odd frame. It's also that strange, disorienting thing, of not being in "my city" anymore, where people know not only who I am but who I've been, what roles I've played (as they've changed, even professionally), and so noone here in Brisbane would anymore say, "Oh, you're a historian aren't you?" where people from Sydney would. Also, of course, there's something in there that says doctors (Abe) hook up with "nurses". It does mean I've trained myself, over the years, and way before I met Abe, to make sure that if I hear women talking about medical issues, I ask them if they're a doctor (not, "Are you a nurse?").

Anyway, I think she wished she hadn't said it and I don't want to demonise an extremely nice, intelligent, interesting woman. But you get my drift.

But the evening went on, and it was terrific. Really interesting people; lively discussion; good food (moroccan style chickpea salad sprinkled with sumac and goat's cheese); and some damn fine wine. Then, as the Sydney pair left, the woman looked at me with rather dewy eyes and said, "You're a good mother". I know it was meant completely and honestly and warmly, but I was a little taken aback. I wasn't sure if it was also an identity moment (I suspect it wasn't), or simply that thing which I've seen before, where people are so overwhelmed by the idea of a child with a disability, that they see coping with it, cheerfully or at all, as somehow heroic. It's easy to forget, for us, when you're in it, that it can seem such a Big Deal to other people. It makes strangers, and friends, quite emotional.

Perhaps that's obvious, but it still sort of rocked me back on my heels, and I didn't quite know what to say.

It made me realise that it's NOT something I say to my friends, unless perhaps in a crisis where they think they're not being a good parent, or want to test out an idea, or are seeking reassurance. Maybe it's from years of not being defined as a parent; maybe it's about being a sort-of-singleton till the age of almost 40, where my sense of femal identity was formed in other spheres. So when it comes to complimenting my women friends, there are other things I think about. Some of my very best friends, of course, do not have children: so I celebrate their wit, am happy to talk about their craft and skill with words, their highly visual way of dealing with the world, their warmth and humour. Other friends are mothers, and indeed excellent at it, but unprompted, I'll tell one how very good she is at her job, and why the way she deals with people, and her visionary sense of the big picture, is really admirable. So should I be telling these women they're "good mothers"? Maybe I'm caught in an old paradigm where, yes, it does seem overly reductive to me to tell women they're good mothers, as if that's the only thing needed to define them. Of course, I wouldn't in a million years want to call anyone a Bad Mother, although we can all call ourselves that in an ironic, martini-at-4, Ayelet Waldman kinda way. And that's funny.

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.

Profound, Severe, Moderate and Mild: Categories of disability and my laughing girl

I've never been particularly into lists, although I've often enjoyed other people using them as a device (Nick Hornby in High Fidelity, say, or the young woman whose name I've forgotten who collects "to do" lists from all round the world [huh, Sasha Cagan - things to do before you die, etc), but just this morning I was amusing myself with lists of differences, between Morgaine and Clancy or - to generalise my very particular life into the entire world - the differences between a child with a disability and a "normal" child.

It went something like this:

Child with M's type of disability: giggles madly when you try to take her top off and touch her neck; thinks it's hilarious when you blow a rasberrie on her belly; can barely lift her own legs so is happy for you to do it when you change a nappy; is shocked and upset if the showerchair is already wet and a bit cold; has to be coaxed into responding to "water, on" and much gesturing with the shower hose; enjoys being dried and dressed again.

"Normal" 8 month old like Clancy: giggles madly when you try to take his top off and touch his neck; thinks it's hilarious when you blow a rasberrie on his belly; acts as though you're curtailing his independence, hard won in a maritime battle with the French over decades, when you try to change his nappy; doesn't really care that the showerchair is already wet; claps his hands and shrieks in anticipation of the water being put on; halfway through being dried tries to sit up, wiggle off, hurtle into space; when the nappy is being put on acts as though he's a chicken on a rotisserie being operated by a stoned 16 year old at the end of the shift, who wants to see what happens when the rotisserie is placed on full speed; then acts like regulation octopus being shocked 25 times by a stun gun in manner of Qld police, while being placed into a string bag in manner of a performance artist.

And then, of course, both have a comedian's sense of timing, so when Clancy finally decided he was exhausted after all the chicken/ octopus on spit impersonations and was ready for a sleep . . . leaving me time to do the daily chest physio I'm supposed to do on Miz M, complete with noisy suctioning machine, size 8 suction catheters, saline solution and piles of towels for propping and positioning, complete with me tracking down songs that help me percuss to some sort of rhythm (Iko Iko a good length for each segment of the lungs, if anyone's interested - although if you listen to it 5 or 6 times you'll go bonkers) of course, she fell asleep too.

They'll awake and need instant attention at exactly the same time. Of course. But there's nothing special about that, that happens to everyone.

And so, life is returning to a type of normality after our weeks and weeks of hospital-related activity. Near the end of M's time in hospital, I spoke to a friend on the phone, while sitting by the bedside, surrounded by machines and charts and paraphernalia and a combined cloud of anxiety and resignation. Ike is an academic, whose work looks in part at disability and the law and ethics and cultural presumptions about the body and normality, and a whole host of other things I can't possibly do justice to. And after days if not weeks of having either entirely straight medical discussions (with doctors who, thankfully, didn't condescend - much), or functional "what next" nursing and allied health discussions, it was magnificent to talk to someone with a blazing intelligence and compassion, to bring a difference perspective to it all. Someone who could address the bigger, conceptual questions with such a profound sense of interest and curiosity about things, combined with empathy. It actually made me sit up straighter as we were talking, and helped me become myself again. (But, thinking of ethics, I can't really describe her work in any more detail than that, without asking . . . ) Partly, I think, this is also because in children's hospitals they (rightly) make sure they remember the child's name and use it all the time, but as a consequence I was often called "Mum". Even written down, it doesn't look like me. Maybe it'd be different if/ when M can speak; maybe it'll be different when Clancy begins to call me whatever he chooses to call me. But even then, I suspect, many women hesitate to be "just mum". So a friend who extended me back into a version of myself: grateful grateful.

Ah, but I can hear my girl stirring. And this damn tube in her nose has lead to increased surveillance, as there's always the chance she'll snag the end of it and pull it out again. Or that Clancy will give it a yank. And last night, I tucked it down her jarmie top the wrong way, after a feed and before bed, so the end came off and soaked her with some icky combination of water and liquid food. Whereas the night before, Abe and I were doing a Laurel-and-Hardie-of-uselessness act trying to set up the feeding pump, when the damn thing started to spill pale sticky liquid everywhere, and as I was wiping it off the floor I said to him, "just hold this end of the tube up, then we'll sort it out". And then I felt it dripping on my head. Without said tube being moved. And I knew he was mightily amused with himself, and was thinking, "well, she told me to stand here".

So I got him a beauty.

His parents arrived from NZ yesterday, and their reception with the kids was lovely. Lots of beaming and waving around of little hands. But it's always tempered by hundreds (no exaggeration, people: hundreds) of anxious questions from Abe's mum, Irene (I nearly didn't give her a name, but given the par above, that'd be shameful, right?). Questions about M, about C, about safety, about risk, about disability and (lately) about C's MCAD. Between the barrage of questions is a lurking sense of guilt and a desire for blame, which Abe is too rational and scientific to detect. So he responds with all the caveats and uncertainties of an "evidence based" approach, rather than a strategic response that says, "no, don't worry about it".

So, just to amuse myself, when there was a pause in the conversation, an apparent stop to the flow of questions, I made sure to pipe up, helpfully: "Any more questions, Irene? Abe'd be really happy to answer them . . . fire away."

Damn, out of time. Never did get to the point of the title, and the qu of categories, and the fact that the ABS lists four for disabilities. Oh well.

A Flea in a Fit: Seizures and what the hell they might mean

OK, well my lovely girl is still in hospital. Almost 5 days in intensive care; moved to an overflow public bed in a private ward; and now finally in a public bed in a public ward - so I can relax now. Her "sats" fell last night, so they had to bump the oxygen back up again, and then this afternoon they were pulled back again. There's nothing like a hospital to insitutionalise a person. Sats and desats are of course oxygen saturation levels, and I can now ask about blood gas reads, remind them that the remaining lines will flush but they can't get bloods from them, ask about the sodium levels, see what's happening with CO2, ask about the pressure spot on the back of her head, wonder what the cultures found on the intra-osseous sites, and help with the suctioning. Although to be honest my stomach still turns over with the sound of the suctioning.

Walk the walk; talk the talk; and rubberneck my way into reading the full chart whenever they leave it "unguarded" for a moment. I know it's all about privacy and legality but bugger that, I want to go cross-eyed over all their acronyms.

So, it's Adenovirus, which has lead to pneumonia, which lead to her difficulty breathing, which lead to low sodium and elevated CO2 and high temps, all of which may or may not have lead to her seizures. The rest of us have mild versions of the same virus: I have a charmingly red left eye, and that's it; Abe looks as though he's been hit by a truck and is exhausted; and Clancy is just like usual only with very red eyes and an occasional cough. So given his high energy, we're talking energizer-bunny-with-myxomytosis. Charming, hey.

And it's easy enough to be lighthearted about it at 10.30 at night, after winding down and returning from a very long day by her bedside. Not so easy when she's not breathing properly; not so easy when you have to keep retelling her little story and spelling out her life challenges - to doctors, nurses, registrars, physios, speech pathologists and the rest.

Not so easy when I keep wondering and worrying about those two seizures I saw. What have they done? What do they mean? Have they damaged her brain - even more? Were they because of what was going on that morning, or because of her underlying condition? It also makes me realise that for all my supposed care with language, where I know that the old sticks and stones axiom is bullshit, and I've never ever said "that's so gay" (partly because I'm too old; but also because it's homophobic bullshit); and I've never said and will never say "that's retarded" because even before my girl came along I objected, your honour, to that phrase. And yet, I seem to say, "he's like a flea in a fit", to describe Clancy's way of bouncing cheerfully off the walls; will say I had a fit about something, when I don't mean that at all and KAPOW just like that, with a closely observed set of twitches in a plump little hand, that travelled up her arm and then over to the other side, just like that as I was so utterly and completely scared that even thinking about it now my stomach is in a knot and there are tears in my eyes, just like that these phrases glow now. They are surrounded by electric lights like those around the make-up mirror of a starlet in a backstage dressing room.

And just like that, KAPOW, I'm confronted yet again by another set of presumptions, by the way resilience and optimism and hope are all configured. Because since my girl was just a babe, and as soon as we knew "something was wrong", I've been loudly and often telling people that it's all ok, it's ok that she won't walk, that she'll be dependant upon us for ever, that she has such high level needs

because

at least

she can communicate, can smile, can engage with us.

And now I'm forced to realise that that's a bullshit reason to give. I love her anyway and always will. Because what if she CAN'T smile back at us, giggle with utter pleasure in such a winning way?

She hasn't smiled at us, or anyone, for a whole week. Even before we took her in to emergency in the middle of the night, she'd had a day where she was sick and not connecting, then she was sedated, then when she came around she was "awake" and not really seeing us. Not connecting. Certainly not smiling. So I've been forced to think about what it might mean if something has irrevocably shifted.

This afternoon, she was starting to engage even more. I got half a smile. She's probably just wiped out and sore and sick; she might be feeling odd from the anti-seizure medication, phenotoin; she probably wonders why she feels like a pincushion (I watched six doctors not manage to get a line in to her this week, including 3 who used ultrasound to try to find a vein); she might be wondering why the hell we didn't act sooner.

So, yes, I do hope she returns to being herself. And I"ll never think about those damn fleas in the same way again.

And I said to her, Have You Got a Problem? The Question of Disclosure

I went off to a "My Time" support group thing today, for "carers" of children with disabilities. This is a group that  has, in the past, sometimes annoyed me for its general "oh, you have milk in your tea! So do I!!" level of discussion, which then becomes real and connected in the last five minutes as people are haring off to meet their various deadlines. Anyway, today was interesting and strangely moving in the way these things often are. Also, having an opinionated-pain-in-the-arse personality style (while pretending to be "lovely") I had sent an email to the facilitator saying, well, I'd find this useful if it dealt with issues like x, y, z and q. Q being "how do you talk to other people about your kids' disability" aka, the politics of disclosure.

And whadayaknow it came up today.

In some ways, of course, there's no guide for this. There's no right way and nothing can save you from the crack-in-the-voice moment, or even the startle-a-stranger-and-leave-them gasping moments, but I think I"m getting better at it, and better at deciding when to say nothing.

But there was a woman there who I'd met only once before, on her very first time of attending anything like this. She was so raw the pinkness shone through her well armoured exterior (just to mix a metaphor or two but, really . . .). Her son has a condition that's terminal. He's three. And these are the first things she lets you know about him. He's also quite a happy wee boy, who likes puzzles, seems pretty relaxed in a room with strangers, and knew how to keep an eye out for the tube attached to his gastro button feeder contraption. And the first time I met her, we were having the regulation Resilience conversation. How to increase your resilience; what you might do; strategies and so on. We also talked about what we did to keep ourselves sane.

And she looked at all of us, firmly and with conviction, and said:

I Don't Know How to Be Happy.

I can't, she said, think of anything I'd like to do. I don't have any time to myself. I can't even remember being happy.

This rocked me back on my heels.

So this morning, she seemed a bit more positive at least. She'd found something she liked to do and had time to do for 2 hours on a Tuesday afternoon or something equally grim (grim because it was only two hours; and the activity sounded pretty dire to me, too, but I won't go into that as it'll make me sound like an up-myself snob, tra la). But I was also struck by her worldview as we talked about disclosure and talking about your child. She tells everyone, she says, and tells them the name of the disease, and that it's terminal . . . in case one of those people turned out to be a doctor or scientist who might find a cure. And related to that, was a presumption that most people were judging her, were unkind and unsympathetic, and if they asked a question well hey it served them right if they were startled by the answer. So everywhere she went, it seemed, she was looking for both opposition and salvation. Opposition and salvation, I think there's a lot there to tease out, if I had half a chance. Her son was standing up in a foodhall recently, with his feeding contraption, and a woman was "glaring" at them. And so, she said, I said to her Have You Got a Problem? And she said "fuck off" and I said and she said and it all sounded deeply aggressive and unpleasant and confronting.

And, she said, I don't cry any more. I'm hardened. Again, perhaps raw and scraped and exposed, rather; perhaps a carapace of pain.

The ground rules for these types of groups, though, tend to be that you don't find easy solutions or presume to have answers. Suggestions and exchanges and stories, sure. So none of us could say, "Maybe the other woman wasn't juding you at all" or "give yourself a break, don't expose yourself by telling everyone and, really, the person you miss won't be the genius who could find the cure". So we don't say any of that.

The other woman who was there had a curiously flat and passive manner, but she really warmed up. Her child is eight, whereas the rest of us had 2 or 3 year olds; and she was clearly exhausted and worn down . . . but then revealed all these clever strategies. Things she'd done and said; what she'd resolved. The socialworker facilitating tried to say as much to this woman, and she was such a worn down little rabbit that she thought she was being criticised rather than complemented.

So the session left me feeling tenderly towards these comrades-in-arms, even though each of them aren't at all the sort of people I'd hang out with. I tried to raise the question of how we do disclosure so we're not taking over and talking for our kids, but given their ages and inability to speak for themselves it's a bit tricky; and more and more it seems a question the "carer" community is scared of dealing with. But I can't help but think about all the disability-activism about autonomy and identity, and what this might mean for how you do it well as a parent to allow for that. How the hell do I honour that impulse, when Morgaine will be totally dependant on us, very likely, forever? Again again again I do hope she might be able to speak, or sign, or have some system of communication one day. Even if she can't sit or stand or walk, I hope she can one day tell us to bugger off and leave her alone; or say that she wants to do something; or let us know what she things.

Then again, as she stroked my arm while I was feeding her, I like to think she was showing me some of what she was thinking, and feeling. And she certainly knows how to laugh. Thinking of which, my half an hour is up (Clancy is asleep on my back, which makes me feel a little like an earnest cliche), and I need to go and get my girl from childcare. I know the inclusion impulse is working well, because she came home the other day with finger-shaped bruises on her calves, and an impressive bite mark. Yay, for the democratic pipsqueakery of the playground. Snort.