Ramping It Up: Children w disabilities, opinions, books

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.

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.

Smiling through a Naso-Gastric Tube

Nursing, it has seemed to me this past fortnight, is as much about technology as it is about bodies and (of course) language. Calibrating oxygen flow. Measuring blood gases. Taking blood pressure. Attaching dots for heartrate monitoring. Connecting boluses for feeds. Hooking up morphine drips. And being surrounded by machines that beep and whistle and hoot; even by beds that make electronic chirping noises if for some reason the side bar is pressing on the air thingo that's pumping up the mattress that slightly vibrates to mitigate the pressure sore. Bedsores, hey, how terribly Dickensian. Or not, as it turns out. And that's not to mention the marks from the intra-osseous, the twenty jabs from the various heel prick bloods, the bruises in the crook of her arms from the mainline, the arterial line and iv line.

All this is academic and interesting when all you have to do is look on, learn how to turn off the most annoying alarms for (say) 30 seconds at a time, or know what question to ask if you see another person in protective gear advancing with the medication/ feeding tube/ whatsit at the wrong time.

Until they suggest you take some of that technology home with you.

Oh, bugger.

Instant panic followed 15 seconds later by jolly-hockeysticks oh well, time to learn a new skill now type response.

It looks as though my girl will come home tomorrow, but with a naso-gastric tube still in, and a special pump and liquid feeds all ready to go. And litmus strips to test her stomach contents; syringes for water; "sets" to be inserted; and a list of instructions spinning around my head, for Abe and I to follow. All of this is because of a "delayed swallow" that means, in her weakened/ depleted/ immuno-suppressed, delicate state, that my lovely smiling, interactive, back-to-almost-normal, giggly girl (who looks extremely robust and not at all like a delicate wee flower), could inhale food and water and choke or get pneumonia all over again.

So here we go, an even clearer sign of "difference", that serves to "medicalise" her, because even without the machinery attached, she'll have a tube stuck up her nose and a great big piece of tape on her face. Still, that once would have confronted me to bits, but I've now met so many children like that I hardly notice; and every second medical person I see says "is she naso-gastrically fed?" and I've always hapily said "no! Not at all, never, eats kinda normally".

Now I'll just say, Yep.

Oddly, as the speech pathologist, paediatrician, registrar and nurse were talking to me about this -- all professionals, all women -- and I was asking about whether this can be supported in a childcare centre etc, the suggestion was made that perhaps she could just be in ch-care very briefly, or I could go and change over all the feeds etc . . . I realised the presumption was that I wasn't working. The Speechy said, well, we'll just trial it for a month or so, and then she looked rather shocked when I said, "And I'll be back at work". Feeding and "toileting", it's the absolute basics, and why I guess so many "carers" don't do other work. But bloody hell.

Another, rather charming, nurse in PICU (intensive care) asked me, "What I did before I was a mum". What? OK, it's not just about being the parent of a child with a disability, it's the oddity of being on maternity leave with Clancy, as if no one really believes you're going to be back at work. At the same time, in a hospital, you're surrounded by working parents, just as you are in every other bloody workplace.

I was also "practiced on" today by an OS geneticist who had to pass a standard Australian paediatric exam in order to work here, so I got to be one of his test cases. He had an hour to grill me on Morgaine's medical history, examine her, and make up a plan for her care. Of which he spent more than 40 minutes with me, including the social-cultural section where he said oh, and did you return to work after having her (ye-e-e-es indeed I did, buster). He was also pretty funny on the social-relationship angle, as we were clearly too boringly well adjusted and coping, so when I said I worried much more into the future than Abe does he said good good good, I'll say there's disagreement there! (Complementary approaches to imagination clearly don't fit into the chart for such things).

But did I remember to say, in case this sounds like an all out snarky little whinge (rather than my bleak reflections of last time, where it was all about confronting demons) that my girl is smiling again? Interacting? Terribly amused when the baby came into the room? I've been trawling through the bookshelves of the playroom, to find things to read to her, and have found all these books of children's poetry, of the silly "homework sucks" variety, with lots of rhythm and rhyme. She doesn't seem to mind. And a sanitised and slightlyl dated collection of Hans Christian Anderson stories, lacking the wonderful pathos of the very old collections, and baulking at the bloodthirstiness of many of them, while keeping the class and strained sexual overtones. (Hmmm, now that was an overdone sentence.) By which I mean the Emperor's new clothes felt very political; the dogs with eyes as big as millstones had all the class elements plus allowing everyone to be horrible to old women on the grounds they're witches; while the story of the eleven wild swans had some icky abduction in it, but failed to include my childhood memory's fave sob-in-the-throat detail, where the shirt woven from nettles was flung over the eleven swans, but the last sleeve of the last shirt was unfinished, and so the youngest brother still had one wing. I felt ripped off by the lack of that final tragic delirious wing . . . but M didn't mind in the least.

And no, I will not not not pad out that story by referring to wings or broken wings or the transformative magic of children with disabilities rising up and walking (amen) because this is a blog, it's not a matinee movie on a rainy afternoon. It's also, in some sense or another, my life.

Making a "Sensory Play Area" -- Or "Little Room"

I'm going slightly demented trying to make Morgaine her own "little room". Not because it's particularly hard to do, but because of my encounters with Hardware Stores and the type of men who shake their head in despair at your requests, and sigh, and say "oh no I've never seen one of those". Or promise to be helpful and then, when you get home, discover that you're missing three pieces that they said they'd given you, but didn't.

But I blame myself: I've learnt you have to be utterly precise, and check everything in an obsessive, slightly mad way. So despite writing out a list of lengths of PVC pipe and giving it to the 19 year old uni student in the major franchised hardware store, complete with total (yes, 5 different lengths, but 14 altogether) I came home with only 11 pieces. And despite phoning the nearest hardware and saying "do you cut PVC pipe to length", I should have specified the size, the colour, and added "really really?" to the end of the question. Because they didn't, really, having told me they did.

**** eeek, vomit crisis! Interrupted by Abe and M, downstairs, because post lunch she's just had a coughing fit that endued in her throwing up all over herself and requiring an all-hands on deck response. Poor little darling. And it has got worse I think she had pneumonia. So I suspect there is something to the "swallow test" I wrote about last time. Possibly she's breathing in bits of food and water and milk. ****

All of which makes my hardware whinge seem a tad irrelevant. Except I am keen to be able to showcase this damn sensory play space if I ever make it, and if it works, and if she likes it. Have been following a pattern I found on this Wonder Baby site although, being a US site it's all in irritatingly Imperial measurements. So once I get it done, I'll put up some pics and add the metric conversions, and explain how I got around the requirement to find a particular piece of PVC joiny-stuff that doesn't appear to exist. (Cue the headshaking from men of all ages, complete with no helpful suggestions.) So I stood in front of the existing pieces and stared at them until I came up with a creative solution - involving liquid nails and un-measured angles.

And I just have to stop being distracted by the fact that this therapeutically derived "Little Room" keeps making  me think of the Billy Bragg song about a "rainy afternoon/ spent in the warmest room" (warmest/ smallest etc), which was all about sex.

And we're about to head out the door, so I'll save up my rant about an article I just read in the Weekend Australian Magazine about food-and-sex, written by a woman who generalised to all women everywhere that, as soon as you have children, you stop being interested in sex. Well BOLLOCKS TO THAT I say, but there's more to it. The ongoing fear of women's sexuality, and the constant denial of it, SHITS ME TO TEARS. But I think it's worthy of a meatier dissection, that should take in the crap spoken about so-called "raunch culture" as well. Yep, sometimes I just think a woman and her orgasm is clearly too terrifying for words.

Speech Pathologists

Just spent a rather intense hour-and-a-quarter with a speech pathologist and OT with Miz M. Started wtih observing how she eats: and at 17 months she still does the "forward tongue thrust" that newboarn babies do. Which means she doesn't have the jaw stability or mouth control that she needs to be able to eat properly or, yet, to learn to speak. Again, the physical and the developmental all tied together. Although she certainly communicates, and I believe she understands quite a lot, and responds to thigns in a way that shows understanding. But given the connection between words and actions, how do you show the meaning of "stop", "go" and "no" (for example) to a child who can't move? Other kids get it because they run towards you and then learn "stop!", or because they have regular head control, they can look down at a toy car and you can show "stop" and "go". All of those things have to be broken down, incrementally, and imagined as a series of steps, in order to show Morgaine how it works.

And in watchign her eat her breakfast (porridge with banana, and deliberately lumpy to encourage mouth exploration and strength) the Speechy wondered if she was breathing back bit sof food etc, given the occasional laboured breathing and funny little sounds -- which may cause ongoing problems, esp given that she just had pneumonia (and 5 fun-filled days in hospital). So suggested we should organise a swallow study (and the little mite in the pamphlet I've linked to is sitting in a TumbleForms Chair just like the one M has at home, so that all makes sense). Yet another of the million appointments to deal with.

I need to contact the "respite care" people today to organise a home assessment, for OH&S reasons etc, before setting up some possible respite care for us. Another thing to get my head around.

Feeling a bit wobbly and less than robust, in fact, after a breakfast run-in with Abe, where I partly expected him to be able to read my mind; and partly would have liked a bit of extra help in organising things. But I hate it when I respond in an overly emotional way to day-to-day pressures. Blah blah and blah. 

And have been asked to go along to a special workshop to find out more about how you adapt everyday items into tools for learnign and exploration etc, with an "active learning" approach, which also builds on the work of Lilli Neilsen . It's also connected to the Hanen Model of speech therapy and language development, which I need to find out more about. 

Trundle Beds and Hospitals

The week before I started this blog, I spent five days in a children's hospital, sleeping by M's bedside, as she had pneumonia.

And there's nothing like an enforced five days and nights, in a medical context, surrounded by machinery and nursing staff, able to observe other parents, to give you the space for abit of reflection.

So I began it all in a notebook, on Mon 28 July:

"I've been wanting to start a blog for a while now - not to mention the no of people who've told me I should - but time, technology, deadlines, work, pregnancy appointments, being with babygirl and managing her disability, have all intervened. So I'm beginning it the oldfashioned way. As hand written notes in a notebook --

"Of course, that's as far as I got at my first stint. I'm in a public Children's Hostpital, next to my daughter's bed, and at that moment a nurse arrived and I had to give Morgaine some medicine. Then entertain her, give her lunch, entertain her some more, and as I write this am attempting to entertaining her with one hand, write, and eat lunch at the same time, while she's propped up in her special TumbleForms seat.

Besides, while she was sleeping this morning I was reading a cut-price memoir, about food, New york, blodding in 2002 and about Samual Pepys and his diary. And no, I'm not pretending to be a diarist whose details of daily life will give insight into an entire age, culture and daily practices in a "deep history" kinda way. It was more a reminder of the notebook and the pen.

Besides, I'm really doing this to reflect on the experience of being a "carer" of a child with a disability, and to ponder what it means when your epxerience of parenthood is partly found int he single line at the end of the chapter, something like: "Of course, while you shouldn't worry, compare, become obsessed with milestones etc, sometimes there IS  a problem and you shoudl consult a medical professional." Or the less helpful, more self-righteous tone of the allegedly alternative which, in saying, "but that happens in less than 5%, 3%, 1 % of cases . . ." as if that minority is somehow unworthy.

Also, it's in direct response to the idiotic, sentimental and therefor enot very astute or analytical or even very helpful . . . sense that carers are "angels". Fuck off! (Ooops, may be getting repetitive here)Be compassionate, sure, but don't depoliticise or heroise us; as if no other identities apply. (Already, some people have been astonished that I'm working, even part time; and seem utterly gobsmacked that my lovely man is both competent and has responsibilities too. Yep, mysogyny is alive and out there; the anti-feminist impulse seems to be on the rise.)

Then again, it's also about this forced cameraderie with other carers. Do I really want that?

And a framework for approaching being a carer, and for disability itself, that's not simply policy or sociological (not that those two don't matter, they do). But the world often makes sense to me using feminist, cultural and literary approaches. So already I've found George McKay useful, on disability and popular music (more on this down the track); Rosemarie Garland Thompson (whose name I've probably misspelled as the book isn't here with me) on Extraoardinary Bodies will I thin be useful too. But in the long term, it's also about M's sense of herself, and I can't can't can't try to take that over.

But back to why "Ramping it Up" -- and the physical ramps of the new landscapes I see and assess; not to mention the domestic space which is going to be completely and utterly hopeless in the house we're in. I also want to use this to keep triack of other stuff: novels; reading; articles; conersations; debates; radio; other media; friendships. My relationship to Abe (and make sure we dont' add ourselves to the "carer" stats, where relationships don't last - despite that brief period yesterday morning, here in the hospital, where we were both utterly and completely sick of each other); and what it'll mean to have baby no 2 arriving in a few months time.

Little M jsut grinned delightedly at me, and is burbling away in her her happy 16 month old way. No consonents yet, with her low strength, but I hope they come. She's singing her litle song, flirting and charming all comers.

And there are all the other things i've discovered in the last 18 months or so, from relationships with neurologists to negotiating the disability system; from the relationship of the physical to the cognitive . . . to the way friends react; but I'll begin with rmeinding myself of what I've learnt from 5 days, 24 hours a day, in a hospital:

- sleepign on a trundle bed, and the particular grimness of the 11pm-1am period, when the baby's unwell and machines beep endlessly.

- trying to "get" all the systems within the hospital, without any sort of guide

- the warmth of the nurses, and the humour and brusqueness of one battle-axe style nurse, who commented to Abe about how dreadful I look in the morning (huh!! too hilarious)

- And then there's the other parents:

* those with Mary Poppins-like organisations and systems and sang froid; with elegant white shirts to sleep in and showers-and-hair first thing

* those with everything in Bi-Lo bags, filled with poverty and despite as they move in that odd, peculiar (and I do mean quite peculiar, one of these women took a bit of a liking to me, and she really did break my heart - and I couldn't work out her age, as she came from another age altogether); that odd shuffling hunched over way of ebing.

- And then there was the 15 year old boy who kept on doing a runner; brought back by security guards.

Must also remember the bedside sanity reading:

- David Sedaris's latest

- London REview of Books

- rereading Michael Connolly's the Poet

- the compelling fluff and gratuitously violent-against-women of Patricia Cornwall. A great page turner but I hadn't read her for years, after realising just how much of a right-wing weirdo she was.

- said memoir/ novel: Julie and Julia by Julie Powell (I like the porject: she decides to cook all of Julia Child's recipes from Mastering the Art of French Cooking, while living in a teeny tiny cat-filled flat in NY. I love her sassy NY-ish moderngirl persona, but I find it hard to be inspired by Julia Child . Perhaps because she's never been much on the Australian radar. Elizabeth David, I get.