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.

When the Wheel falls off the Wheelchair: Can you build a raft with a ramp?

I drove up to the Children's Hospital again this morning, but not for the usual reason. Morgaine is fine, and has been out of hospital for ten days now (twelve days in, five of them in Intensive Care) and was in the backseat giggling with her brother, who was wont to make a fuss. I was driving around in circles, trying to find a park near one of those places where parents from out of town can stay while their children are wrangled and poked and labelled and examined time and again. Finally, I just parked illegally and tried to make contact with this woman I'd never met before. A woman I had been put in contact with just last week, by The Therapy Place, as she was contemplating the same type of Special Needs Car Seat we have for Miz M. Fine, I said, give her my number; happy to talk. 

Happy may not be the right word for it. 

By the end of that phone conversation, I realised she needed something much more than I could provide. She needed a whole network and professional advice; she needed money; she needed decent equipment; she needed a partner who hadn't upped and left in the face of their daughter's disorder; she needed medical advice; she needed not to live so far away; she needed help with a child who makes M look strong in comparison. Miz M can now hold her head up for 15 seconds at a time sometimes. I'd been celebrating that, and then realised it was a tiny tiny incremental shift and still didn't compare with any usual range of "normal". Well, this girl can't hold her head up at all. So fragile; so lacking in strength; so terribly in need of modified equipment.

But I turned up, and showed her what we had and how it worked. The footpath was beginning to vibrate under my feet with her level of stress. It wasn't so much that she was about to cry - eyes fill with tears regularly in this world of ours - as that she was about to disintegrate before my eyes. Bits of her were spitting out and edging apart at the seams, for lack of knowing what to do next. She'd clearly pinned some hope on me turning up with a solution . . . but it's not quite right. I suggested she contact Technical Aid for the Disabled, to see if they could do the modifications for her, but the despair hardly allowed her to know where to begin. And she hadn't heard of many of the organisations or possibilities or lobbying or hustling out there.

And then one of the wheels fell off her daughter's wheelchair. She nearly lost it. What if we'd been going down that hill; why didn't they fix it yesterday; I'm going to raise hell with someone very soon. I hope she raises hell with the right place, rather than spitting fire indiscriminately.

This woman needs the National Disability Insurance Scheme - and, I'd suggest, a good organisational support structure that could ask some of the questions she doesn't yet know to ask.

And then here's my ethical dilemma: the question of breeching trust. I contacted the head of the social work section of the Therapy Place, and left a message saying that I thought this woman needed more help. Urgently. Partly, I know what she needs is a friend to debrief with, a person in a similar situation to talk to, and I don't think I can be that person. I don't want to be that person - there's the selfish bit. I recognise the jangly need; the awfulness of not getting answers; the perplexity of not knowing how to ask the right questions . . . but I know my strategies are different. But I also know I'm not alone the way she is. On any cold night, in any moment of frustration and fear and anger I not only have Abe who wraps himself around me, who I can and do turn to; I have a liferaft of friends. A liferaft, not just a raft. 

This woman needs a raft. With an outboard motor, and maybe a little house built on top of it, filled with cups of tea, books, and a computer filled with useful bookmarks. And either a how-to guide or a flat pack version of it, that she can build for herself. How's that for an overworked Ikea-ish metaphor.

Impossible Meetings With Doctors

On Monday we sat at a table in a conference room at the Children's Hospital opposite two extremely nice doctors, having a conversation about "end of life decisions" for our girl. About intubation, resuscitation, levels of intervention, and what it all means for quality of life; for being kind, for making sure she's not in pain or distress. This isn't because she's about to die, but because she could have died a week before this conversation, and a month before that, and a month earlier . . . and because it might happen next month, or maybe next year.

It looks rather bland when you write it down. As if it's straightforward.

It can even look cold, or uncaring, or too clinical.

Oh, hardly.

Two weeks ago today Miz M really wasn't well when she woke up, even though she'd been fine the night before. Laboured breathing; very tired; working hard. Luckily, our fabulous physio and speechy were coming over that morning for an appointment, which meant they took one look and said, hmmmmm, something is not right here. A respiratory rate of 60+ (about twice what it should be for a 3 year old). Meanwhile, the airconditioning had broken, so I was having conversations about pieces of machinery that were broken, while awaiting the young woman who comes to give us respite for 6 hours a week, so I could break the rules and ask her to mind Clancy while I took M into Emergency. Aaaaah, she had a gastro thing and couldn't make it.

So, off to Emergency with a sicker and sicker Morgaine, and a rambuctious 20 month old. Cue, temperature (39.5); cue, low SAT levels (82); cue, mucho oxygen. And thankfully, a rather nice young doctor who found a portable DVD player and the Wiggles for Mr Can't Sit Still.

And by now, the doctors all say -- but weren't you? But didn't I? And I say yep, we were in here a month ago, and two weeks before that, and a month before that.

Four major admissions since the beginning of the year.

And for some reason, we always end up in the same cubicle, right opposite the doctor's station, where once she's been whipped in to be seen to (no waiting around for us! Ever! nothing like a crisis response to let you avoid a drama filled waiting room) then I can watch them. The large, comforting doctor who always introduces himself and shakes your hand, and you'd follow him anywhere he seems so kind. The blond nurse with messy hair who just screams competence, is in five places at once, and acted so quickly the time before last when M had a seizure and suddenly lost oxygen in Emergency. She's also a paramedic, it turns out. The Baby Doctors, who veer between anxious and arrogant depending on (ahem) gender (who said that?).

I even read exactly the same magazine two admission in a row. There were weeks between admissions, but the same 6 year old magazine was there, boring me to sobs. Always always always have a novel, pen and paper, a spare pare of undies and a toothbrush. And a toddler, with plenty of snacks. Abe had a meeting he couldn't get out of a fortnight ago, but Clancy was pretty fabulous really.

Oh, and M also has hyponaetremia (spelling?) - low sodium, due to SIADH - so I now know to say, no, not just a chest X-Ray and NPA (snot test), please take venous blood asap. Really. And when you get the terminology right, and can remember the names of half the nurses, they tend to believe you. Although they have such a horrible time getting bloods, that I almost always watch 3, 4, 5 different doctors try before they get it done.

That night, after Abe and Clancy had gone home, and we were still in Emergency, M's breathing suddenly looked odd. Can you check this, I said to one of those eternally calm, unflappable, older nurses - who then told me she'd been worried and had just gone to get the head doctor to look at her. Respiratory Rate over 80 per minute. Not so good. So we end up on the ward, for two nights and a day.

It looks like aspiration pneumonia this time (as opposed to Human Meta Pneumo Virus and RSV and an unknown wacky virus the other times this year).

The first night, I sleep on the ward - after hearty greetings of "Oh, we know this child, and we know this mother!" Yep, been to this ward, before, thank you! Even been to this room. We get up there late, it's almost midnight, and there's one other woman and her child in there. Large and cheerful, introduces herself. The next day, slowly, we exchange stories. This one's a bit more Suburban Gothic than most: dreadful parents-in-law who've accused her of faking her child's illness (endless 5 minute long seizures, that'd take some coaching); break up with her husband; baptist-home-schooling stories; best friend whose husband was abusing the kids. Aaaaaaargh. Makes me feel shockingly middle class and happy. Mind you, she was quite nice; while I kept bumping into others and having bizarre conversations with people filed under P for Peculiar in Hospital Central Casting. Oi oi oi.

The next night, I go home. After so many weeks with our girl in hospital, poor Clancy is starting to notice. A mother who completely disappears? Not fair, really. And he seems fine, then gets a bit stroppy and overly emotional. So with a whole overcoat of guilt on, I head home. And was about to go back in the next morning, when the hospital calls to say, she's suddenly a lot worse. Oh, and they've put her up to 16 Litres of Oxygen (what? she was on 6 when I left) which is as much as they can give her on the ward. I go in, and the nurses won't leave her side. There's a flurry of doctors, of all varieties. Meanwhile, I had agreed to participate in a practice exam for one of the Registrars (I've done about four practice "long cases" this year, and any number of practice examinations - it kills time, and tends to be pretty interesting). So, we're going to transfer her to Intensive Care. Fine, I say, to the young doctor, I'll do the case with you as long as you don't mind that there's stuff going on at the same time. It's a way to slow my heartrate, but not, I suspect, his.

Six days in ICU. She was within a hair's breadth of intubation. They used BiPAP instead (where the machine breathes for you), then CPAP (a different type of pressure), before a transfer back to the ward for another - oh, I don't know - four days.

Thirteen days.

And last Friday, the neurologist came around, to say that he thought there was something else going on. Something besides the Hypotonic Cerebral Palsy, something that he can't quite get to the bottom of. I think he has a few ideas, but can't get him to really spell them out. It's because of the low sodium; it's because she's so very disabled. It's because she has no myelin at all in her brain. So he's ordered genetic karyotyping, and a "CGH Array", which is all about genome mapping and a possible chromosomal abnormality - of the rare and "interesting" variety. Demyelination. Leukodystrophies.

You know, he says, her prognosis is not very good.

Well, slowly, I had come to realise that. Maybe that's why I haven't been so good at writing here -- much as I really needed to.

Abe already knew. He knew before I did. And a few months ago we'd forced ourselves to confront that, and did it very badly at first. I began to work out how to ask the right questions, and found the research on Life Expectancy for children with CP when they have M's level of disability. Such limited mobility, being non verbal, peg feeding, little head control, having been born full term, tended to mean a 40 % chance of living to be ten, for example. But that's probably way outside what we can think of. Especially because there's something else gong on.

And poor Abe. My unthinking optimism made it very hard for him to say, look, her quality of life isn't very good. It silenced his despair. It didn't give him space to say, actually, this is pretty fucking heartbreaking. 

So I'd celebrate a smile - we both did - and a tiny tiny improvement, and he'd also be terribly sad about all the things she couldn't do. It took a really difficult conversation, months ago, to realise that our perspective on things needed to come closer together, or at least, needed to acknowledge each other better.

So I'd be worried about how vulnerable she'd be as a teenager or a young woman; and he'd tell me to live in the moment (which was fabulous), while really knowing that it wasn't something we were ever going to be dealing with.

And slowly, the question of how you deal with hospital and medical systems in a type of real crisis had come to the fore. A year ago, standing by a hospital bed while on holiday in Proserpine, a nurse asked us if we'd made decisions about resuscitation. It jolted me like the lightning that struck the character in Tracey Chevalier's latest book. We were completely unprepared then; not much better recently. What, exactly, does it mean, and in what circumstances?

So for the last month or two we'd started to talk about it. I thought Abe might know, as a medical person, but he wasn't sure how these decisions come about either, in light of a general duty of care and doctor's ethics, and how anybody can sensible respond to what you've decided. It's different if you're an adult, making your own Advanced Care Directive. It was on my agenda for an appointment with the paediatrician that was going to happen tomorrow. 

Then, after that conversation with the neurologist, I decided to contact the Social Work Dept at the hospital, and asked if they had any guidelines or reading or advice. What we really needed, was some terminology and a framework. Of course, it's bread and butter to them. It shows the ways in which these large institutions really are compassionate, and complex, and subtle. They deal with this type of thing all the time. A Family Conference, she said, that's what you do, with the doctors, and an advocate, and a social worker, and you go through in detail if this, then this; if this, then this; and it's in the Chart, and you can have a copy yourselves, and you can change your mind at any time.

Oh.

So suddenly, it happened. Just the two of us, and these two rather wonderful women doctors, having an impossible meeting.

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.

Your Daughter? That's My Worst Nightmare

If only I could write like Hilary Mantel - whose wrenching, angry, memoir Giving Up the Ghost made me laugh out loud, or snort and snuffle into the lounge to the surprise of both Abe and Clancy. Because she's intelligent, because she's a good researcher, because she's articulate, doctors spent a lot of time being surprised by her and, because it's the late 1960s and early 1970s, they pathologise her rigour and turn it into psychosis. One doctor tells her she's conscienscious, with a mind for detail, in a mildly accusatory way. She was studying law, and so goes on to say, "I tried to imagine the other kind of law student, the kind who favoured the broad-brush approach, who took on the law of trusts, for example, with a grand generalist's sweep and dash." Well, it made me laugh.

I also loved this, when being treated appallingly by dickhead lecturers at university, who couldn't see why a woman should be studying law at all: "Some people have forgetten, or never known, why we needed the feminist movement so badly. This was why: so that some talentless prat in a nylon shirt couldn't patronise you, while around you the spotty boys smirked and giggled, trying to worm into his favour . . . It was assumed that marriage was the beginning of a woman's affective life, and the end of her mental life." (pp 160-161) And goes on to describe how, in job interviews, you were grilled about marriage, intentions, when you were going to "start a family", by "some grizzled ringmaster, shifty and semi-embarrassed as he asked a girl half his age to tell him about her sex life and account for her next ovulation." But really, it's  one of the best descriptions of pain and illness and misdiagnosis I've ever read. I had thought that both Joan Didion and Susan Sontag, even David Rieff, talked about illness and hospitals and the medical system well but, really, Mantel takes the cake by describing this ostensibly sweet self who was raging and railing and almost screaming with frustration inside a body that was going out of control. But then again, maybe I only think that because I finished reading it in the last few days, so it has inhabited my imagination.

That, and Colum McCann's Let the Great World Spin - vibrant, clever, convoluted, sad, utterly gripping. In some ways, a novel about grief (I wept through one entire chapter; then was buoyed up the hard edge and street rhythm of the next, which left me surprised at the left-over sniffling); in others it has the euphoric poetry of Philippe Pettit's tightrope walk between the Twin Towers balanced over everything, turning your eyes and the character's eyes up and up. Then some cringeworthy moments of race politics where you can hardly look at the page. Still, it helps to have seen the doco Man on Wire, about that tightrope walk, to give you Pettit's arrogance and his poetic hopes, given that he walks in and out of the novel. Must go and find some more words by McCann, because this Irish-American storytelling was really something.

And on the whole entertainment thing, I've also managed to see two films (ta-da) and start a few other novels. Saw Jane Campion's Bright Star which was so beautifully framed and gorgeous to look at, and wasn't Abby Cornish fabulous, sweetie? And the opening scene, full of laundry and washing lines, like elegant birds in the landscape, made it a very domesticated, women's film, without being a conventional Chick Flick (which is a dopey term, but hey). For a story about a relationship with a male poet, it was so covered in cloth and held together by handstitching, with views below stairs and in the kitchen, so that the work of capital-R romance was on display. No "Elven Grot" for Keats' rather more earthy Lady of Shallot, rather a house that had to be rented and walls that were a little thin. Given that nothing much happened, it still held me . . . and of course, wept through the last bit, and emerged from the cinema with mad hair and a red nose, in the middle of a hot sunny day, and had to slink down the street without a tissue, feeling rather tenderised.

And then saw Avatar in 3D (on the "now for something completely different" stakes). It was so completely and utterly "filmic": a huge spectacle, roaring over your head and leaping right into your face. And yes, some ooga-booga spirituality and none-too-subtle colonialism versus the pure indigenous hearts and minds. But what a beautifully imagined world, with lovely detail. Am still wondering, though, what to make of the soldier with a disability at the centre of it: there he is, being self-sufficient and capable, and seems to have enough ramps and access points to get around in; yes, we see him being discriminated against by some macho marine pratts, but he doesn't give a shit; and the promise is held out to him that, if he could afford it, he could get working legs back again. So, is this the future? And then there's the project he's working on, where he has a "conventional/ unconventional" body by inhabiting this alien avatar. He first disappears into this pod, this terrible claustrophobic space that keeps him still and make him terribly vulnerable (exposing both him, and a central plot problem; that, and what happens when his alien self is asleep. Lucky there weren't any little alien babies nearby or he would have been in big trouble for sleeping through). His broken/ disabled body is left behind; he stands up and walks and runs and exalts in the physicality of his new alien body, that can not only stand up, it can leap, almost fly. He's remembering old sensations. Get up out of your wheelchair, my child, and walk. What if he'd been a kid who never could walk, who had to learn afresh: would he have enjoyed it as much? Must the disabled body always be positioned as something that's "wrong", so that even living virtually, while isolated in a pod, where "at least" he can walk is better than living in a new way in his own body. With all that military technology, you'd think he could have a pretty fine chair. I really want to know what the properly thought through disability activists and theorists think of this one. I don't really know what to think. A few links here, including a man who says hey, we don't all necessarily long to be "fixed".

But here's the link back to a non-alien, non-green-and-scaley skinned ordinary life. What if the person in the wheelchair is imagined not as a person - or a child - but rather as the worst possible scenario, the "nightmare"?

We live next door to a very nice, very social, couple. Two women who talk and laugh loudly, and know how to throw a generous party, with a bottle of champagne or 50, and everyone invited. So just before Christmas, I wandered over, leaving Abe (who wasn't in the mood) at home with the babes. There were lots of people who I'd seen in the street but not properly met. Often glimpsed as we all head off to work, or wrestle stuff into cars, or chase dogs down the street, or do 85 point turns (me) in a very narrow street with bugger-all parking. A young couple were there, pregnant with their first child. Young Professionals, who I didn't find wildly interesting, but I threw back too many glasses of sharp cold white wine and became all wide-eyed and overly-enthusiastic about everything (sigh, must grow out of that). So we talked about the baby, and the guy said things about how they were having one who'd be all dressed in frills and pink, making me grind my teeth with irritation, but really - perfectly nice, all very bland and middle class, everyone well educated and had read the right books on pregnancy and health. I'm not into giving out unwanted advice, or pretending I know how to do things. I did say they should yell if feeling overwhelmed, just on the basis that the snot/ green baby shit/ weird behavious might be reassuringly familiar.

So we talked about pregnancy, and health, and labour, and I did say that yes, with Miz M, it was a healthy pregnancy, full term baby, no known problems, and yet yes the mysterious, severe, disability happened anyway, and here's our lovely girl, likely to never walk or sit, may or may not ever talk, will need us forever.

Disability.

"That's my worst nightmare", he said. I was a little bit pissed so didn't get at all offended or upset, and just did my usual, "Oh well, you just cope with what you cope with, don't you" routine. But really, my daughter is your worst nightmare? Full marks on the subtlety stakes, I say.

And it had been a week of it. Not long before that, Abe and I had actually managed An Event without children. We organised a babysitter, and went out to a Christmas drinks thing for Abe's work, full of medicos and scientists and heirarchies like I'm not at all used to. Standing around on a lovely verandah with a view over the city and (again) very nice wine, and met some interesting and not so interesting people. A fabulous young woman who was a paediatrician and very funny, who pointed out a very senior guy she worked with, and that she'd always thought he looked as though he should be wearing a puffy shirt and being one of the three musketeers. It was D'Artagnan at thirty paces from then on. A man who ran a branch of an airline, but clearly didn't read the papers, which was odd. And a woman who told me she was a physiotherapists before she retired, and worked with people with disabilities. "Physios are terrific," I said, startling her with my conviction. So I had to explain why, and told her about Miz M's work with therapists . . . and then, in another act of great subtlety, she told me how her children used to be mortified when she'd be out with them and she'd see a client and go to say hello. "Mum", her kids would say, "why do you always have to go talk to the people in wheelchairs with pasta stuck to their foreheads". Oh ho ho ho and Merry Christmas to you, too, good to see there's a laugh to be had there too . . .

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.

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.