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.

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.

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

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

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

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

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

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

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

In other words: mustn't grumble.

Oh, go on.

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

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

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

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

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

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

Holus Bolus: "Hospital in the Home" and naso-gastric tubes

It looks as though Miss Muffet will have a naso-gastric tube for a good while longer, months rather than weeks, until we move onto a PEG (Percutaneous endoscopic gastrostomies)/ gastrostomy button thingo that allows her to be fed directly into the stomach. This also means that the once pristine and streamlined spaces in our funky-but-not-particularly-child-friendly house (oh, look, a "void" in which to consider the idea of soaring space; or a potential spot for 9 month-olds to wiggle to and fall crashing down 3 metres) will be increasingly festooned with strings of purple tubing, old bits of bandage, plastic syringes, splatters of beige liquid feed, and these odd contraptions that are part of the "feeding set" that look as though they should be made of silver and attached to a piece of black cord so I can wear it around my neck as a piece of contemporary jewellery.

We even managed to go out for a walk by the river with M in her chariot, giving her a feed via tubes and pumps and backpacks hanging off the handles, rather than timing everything around the times for the "bolus" feeds. Bolus. Once again, this whole experience (by which I mean, my life) throws up new words and word usage. And there I was thinking I had a reasonable vocabulary. But no, I'd only ever used the word unrflectively, to talk about accepting something "holus bolus". Turns out bolus comes from the Greek meaning clod of earth, and has been transformed by science/ biology into a reference to the wad of food/ saliva/ liquid formed by chewing and swallowing. βόλος (Bolós). No wonder I didn't get that: I studied classic greek for a while at uni and was spectacularly bad at it. Although it did lead me to meeting an extravagent chain-smoking Lithuanian woman with a very complicated love life involving a survivor of Maralinga nuclear tests, and who was a lot older than me, who cooked home-made pesto and told great stories. And somewhere I even have a Liddell-and-Scott Classical Greek-English lexicon (how did I retain the name correctly, after all this time?), and various Loeb editions of Xenophon and Thucydides. I also remember translating a story once that I claimed was about a goat, and was instead about a trireme or other boat of some kind. Awfully difficult to row, et cetera.

So anyway, we're down to one "bolus" feed per day, and an overnight feed, with many a stop for water direct into the tube. Poor darling girl doesn't have a whole lot of strength, but she does grind her teeth together rather forcefully when we reinsert the rube. A terrible sound. Hopefully, not too terrible an experience for her. And cleverly, she has worked out how to pull the tube out, especially in the early hours of the morning, leading to sticky icky stuff everywhere. Which is not a problem. The thought she might pull it half out, and choke herself on a lung full of liquid, is a problem. I don't think she 'll do it (I can't think she'll do it), as she wants the damn thing out, so she can thoughtfully chew on it, and smile.

She's happier, and stronger, than she was before she got so terribly sick. What's that about? Hydration? Finally having clear lungs? Not needing to expend so much energy eating and swallowing? That she's no longer aspirating? Or could she have been having small seizures we didn't know about, whcih are now controlled by the Phenytoin she's taking twice a day? Not sure that we can easily get to the bottom of that, but we have to, management wise.

So we saw the paediatrician this morning, a very nice, youngish, communicative woman with brains. Yep, she said, we'll be doing the tube feeding for a while, and there are referrals to gastroenterologists etc coming along. And on Wednesday, it's the neurologist again.

Meanwhile, the therapy, the interaction, the communication, the encouragement, the work, the songs, the toys, the pleasure in our lovely girl, all continue. And yes, we want the best for her; but no, we're not about to go haring off to China or Russia for unproven and expensive stem-cell based therapies, of the type I've been hearing about lately. There was a man on the Law Report who put his hopes into a "cure" or at least the alleviation of his own suffering using a chiropractic based therapy; and there were some very blunt assessments from parents in the weekend paper, on the way in which these clinics sell "hope" rather than evidence or results.

I can sell myself hope any day of the week.

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.

A woman I don't know just made my day

Huh, there you go: a reader! Thank you, Virginia Harris from the US. It was a long day - not a bad day, but a long one, definitely. I woke some time after 4 am, to hear the baby cooing away to herself. Abe got up and gave her a pat and checked her nappy and climbed back into bed and wrapped himself around me. That was nice, so I snoozed off, and awoke some time after 5, literally dripping and slippery with sweat. Hmmm-hmmm, too gorgeous for words. Hot because of the pregnancy; hot and sweaty from crazy hormonal dreams; hot from too many covers. Coughing half the night, bugger it, I think I'm getting some sort of coldy thing.

Morgaine was gurgling away, so I got up and did the bottle and breakfast thing, and still managed to be later than I wanted to be. Got to work at about 7:45, leaving Abe and babe behind to do the rest of the morning and childcare wrangling. Only two more weeks left at work before I'm on Mat Leave though, so there's a shitload of things to do, to organise, to write up, to handover, to do briefings on, to make sure I don't forget. And something I've been working on since May still isn't finished and gets more complicated by the minute.

Spent an hour and a half filling in the guy who'll be filling behind me. Another hour on the phone to the guy whose job I'm filling behind. Another hour or so with another colleague doing a job I used to do, with lots of energetic feedback and ideas and filling me in on new freelancers and others. Millions of emails. Reports to write. Some now very very late surveys I'm supposed to do.

And Myff tells me via email she may have to have some invasive, gynaecological, surgery, and I run out of time to reply. Damn damn and damn.

Discover in between work commitments that it's hard to find a paediatrician who might work as a conduit/ overview/ adviser for M. Have contacted 6 in the last few days, who've been recommended, and who aren't taking new patients. What?? Missing Sydney and having a dose of the "what type of berloody city is this anyway" things, and then finally find a woman who will take us on. Felt as though I had to prove M was going to be an interesting case (trust me! she's an enigma! we may never get a diagnosis! Surely that's a challenge . . .)

And of course, Morgaine's name is not really Morgaine, although it was on my personal list. It was vetoed by his-name's-not-really-Abe very early on in the piece. M's name is a little more unusual, and is destined to be spelt aloud forever and slightly mangled. So I was interested although a little annoyed by the tone of the recent Life Matters Talkback on names, which was a little too Anglo in its approach to "unusual" names. As usual, there was some good stuff in there, but it hardly acknowledged the migrant history of Australia, and the long tradition of names being changed. So was pleased to come across this Salon article on the politics of naming especially in the black American context. Not that M's name is a political statement, in case it looks like I'm making any grand claims here.

Where was I? Oh yes, writing in an unstructured way. Would usually either make all of these points discrete, or re-order and restructure . . . Instead, let's see how a bit of streaming goes, hey?

And I do know that in one of my first posts, not so long ago, I mentioned the diarist Samuel Pepys and so was pleased to come across this article about him, his shorthand, his sexual "peccadilloes", and let's face it his mysogyny and violence and arrogance . . . as well as the delicious daily life details of him being distracted by the small of shit from his neighbour, of him NOT cancelling a dinner party on the night of the Great Fire of London, and some great observations on the bourgeoisie and work from the reviewer. A reminder of why History matters.

Oh yes, that reminds me, my fave online feminist history site is Philobiblon.

But where was I, again? No, I need a bit more structure, and I seem to have begun this one not so much around an idea as a chronology ("what a difference, a day makes" -- lordy lordy, I can even hear her singing it). And the working day ended as so often, with the last hour an intense gallop towards the clock, knowing when I have to leave to pick M up from childcare. Cramming in phonecalls and emails and updates and decisions, and surprising young women in other parts of the country by saying I'd heard they did good work, and wanted to know more about who they were, what their skills are, and whether they might be available for 4 weeks, 3 months, 5 months of possible work etc.

Listened to the repeat of Late Night Live on the way to childcare, on the other side of town and closer to home, with some great stuff on the identity of Brisbane with journo Tony Koch and aca Julianne Schultz. Had been feeling a bit jaded and small-townish about the place in the last week or so (did I say I still miss Sydney???!!! well I do I do I do), so a reminder of its vibrance and art scene, the political radicalism that came in response to Joh Bjelke Petersen, the importance of the Springbok tour (although I was too young for that to register as other than historical) and, of course, the importance of the Fitzgerald Inquiry  which I do remember . . . made me feel better about having moved here 2 and a half years ago. But not entirely reconciled.

So, arrived to pick up my girl, who was in the midst of all the other babies and toddlers (great), but lying on her back on a cushion while they all sat up and did their thing (not so great). Was so pleased to see her didn't have the courage to suggest it'd be better if she'd been put in her TumbleForms chair, so that she could sit with them, be in the same eyeline, interact in a different way. Besides, I know they're very good at having her interact. And apparently she played with "goop" today, as part of a whole sensory play thing.

And ah, the warm soft smell of her neck as I carry her out . . .

Then home, and as she's sitting in my lap we check the home computer, and there's a lovely warm reply from Robin Barker, per my earlier post, and a response from my first ever known reader of this blog. Huh!

And to keep up the momentum, M and I do the whole bottle and cuddle thing; sing some songs; she plays in her chair; I finish making a batch of marmalade (yeah yeah, whatever, I find it relaxing); she's thrilled when Abe gets home; dinner of a slightly-too-gristly Osso Bucco I made (yes I AM the cook in the household, but abe does all the washing up and cleaning up and washing). M and I play on the lounge with a ball, even though she keeps sliding off to the side because she can't sit up unaided; while I have one eye on the Brit series "Grumpy Old Women", which had its amusing bits but really I want to grumpily declare they should retire the berloody franchise now . . .

And Abe has been playing with the baby downstairs, and now she's all very cute and ready for bed in her flanny jarmies, here on the spare bed in the study, while i think about heading off to mine, to read a reasonably entertaining history of cleanliness, or maybe to go back to the beginning of David Mitchell's Cloud Atlas because it was so fabulous, or to pick up A S Byatt's Possession for 846th time, because it's the comfort read du jour.