Ramping It Up: Children w disabilities, opinions, books

Falling off the blogosphere: And Gastrostomy insertion

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

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

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

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

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

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

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

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

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

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

The practicalities of disability equipment

I remember first beginning to use the internet properly while working as a researcher at a university many years ago, about 1992 maybe, beginning with a program called "Telnet" and then "Netscape". There was a lot of talk about the "web" and the "net" metaphors, that seem terribly dated now that even yesterday's language is about social networking, and the conceptual frame has become - oh, I don't know - three dimensional-public-square-meets-avatars or something (and even that's not exactly up-to-the-minute). So as we become skilled at tracking ideas and resources and information in a lateral way, squirreling down various holes, then bookmarking ready for a return, it's easy to forget just how traceable the bits of webbing can be. The individual knots.

One of the interesting things about having a blog is that it's possible to see how some people got here, and to click on the google or other search. Immediately, it reminds me of just how lost you can feel when the whole disability world is suddenly part of your life; to be reminded just how little you actually know about equipment, therapy, what's available, what's proven, what's speculative, what's downright nutty and dangerous, and what might stop you in your tracks because of the pathos of it all. So many many of the searchers are things like "naso-gastric tube feeding" + "children"; or "supportive seating" + "low tone"; and in the hope it might help someone else out there, as I remember some of the things I wanted to know and couldn't find any decent info on: "what the fuck do I do now I've discovered my child is never going to walk?"

Not that I have any answers, mind you.

But here's a quick equipment update: the Kimba Spring supported seat with mobility base works just fine. Ours doesn't look quite like the link, as M has to have an oval chest strap or else she'd fall forward, and so we don't have the bar thing on it, but do have a tray that can attach. It's one of the few that has proper head supports as well as trunk and hip and back support, with everything adjustable. (There're great seating systems out there that presume a child has neck and head control.) Also, it sits inside on a special base, with heavy duty metal feet that you can really kick the shit out of your toes on if you're not careful. But that's the case with almost all of this equipment: it takes up space; and has a large footprint to keep it stable. So if you're stumbling around in the dark you curse it mightily. It also has a "mobility base" that makes it look like a large pram. I had a few weeks of getting hot and bothered while trying to pick up the seat off its indoor base and attach it to the mobility base thing. I always seemed to need to see what was happening underneath while attaching it, which was impossible. There were a few more months of wrestling the damn thing into the boot of the car, as it weighs a tonne. All of that is fine now, except it looks dreadfully battered and spattered and scratched, and it's supposed to last for years. And the stupid footplate won't stay up properly, which can be maddening. And the adjustments aren't that easy to make, unless you're a professional. But once someone else has readjusted it, it's invaluable. Mind you, to get the tray table in the proper position so it supports her elbows and is close enough for her to use, means it's on an angle and any toy slides off and lands on the floor . . .

The Tumbleforms chair puts her in a lovely position, and is what they use at childcare, and can be great when visiting friends, but is clearly not designed for the Australian climate. It gets very hot and sweaty. (Actually, the same is true of the Kimba. Accessories are all about keeping warm, so the sun shade on the Kimba bit can leave her rather exposed. Sunblock and hats all round) Still, I panic at the thought that the Kimba Spring might break, as it would be completely impossible to get her around the place, or to be at childcare etc.

We also have a Leckey supine standing frame, which is the best looking item of equipment, partly because we never feed her in it, so it doesn't look quite as disgusting. It's in a fetching pink, and is pretty easy to use, although the headrest swivels about a bit sometimes, and the bolts and things seem to spontaneously loosen, so you have to do lots of checking and retightening. The great thing though, is that it has a lock at the back so that wee Clancy (who's only ten-and-a-half months, but is very physically adept, and fiddles with everything) can't actually flip her up and down like a trick-trapeze. Which is a useful thing, really.

The "Carrot" Medifab car seat also works just fine, but like almost all special needs car seats, they're not properly approved through Australian Standards (which are pretty good when it comes to safety, indeed better than the standards from a lot of other countries - so OS designed products should spend the extra money and time on proper accreditation, it seems to me). I need to find out whether it's approved for use in a plane, should we ever manage to travel anywhere, as she sure as hell couldn't sit in any sort of normal seat.

All of the above are scarily expensive, with varying amounts of govt subsidy available - none at all for the carseat.

So far, so banal. So this is not a reflective blog, it's a "service" entry.

Mind you, if I have time, there's a lot to think about that's not at all about disability equipment, but about life generally. Hey, no, that's not it, it's just about me me me (snort): colour, and a great discussion about why we've become too timid and afraid of it by an interior designer on "By Design"; colour and verve, and the Easton Pearson exhibition at the Gallery of Modern Art in Brisbane (not that I necessarily want to wear some of them, but would love to become the type of fabulous old lady who swishes into places in a yellow balloon of a dress and giant necklace, with attitude, brains, and a great haircut). Light and shadow and beauty and the "Floating Life" exhibition at GOMA.

Also, a visit from an old old friend - one of those friends you can NOT see for years, and then suddenly see each other and connect right back up without a second's delay. We met in 1985 at Uni. Bloody hell, that was a long time ago. She introduced me to the firmly-held-and-maintained idea that every girl at any time needs a pair of red shoes in her wardrobe. And I've stuck with that. A friend with firmly held views on the perfect teacup (thin porcelain, large, ideally with OTT floral pattern). A friend whose heart has been broken and life was shattered by some very bad behaviour by a bloke, but who hasn't lost her passion for life and enjoyment of the world. This is a friend who talked about being besieged in arguments with her ex, where she was so confronted by the awfulness and intensity of it, that she didn't know how she felt or what to say. Intelligent, articulate, emotionally together: but I completely get that, and the awful confusion of being a mass and a mess of feelings that you can't even express.

And if I had world enough and time, my dears, and if I was feeling properly brave, I'd talk about how agitated and irritated and trapped I felt by being contacted by an "ex" who wanted to puddle around in the past and get explanations from me. I wanted to keep it clean and clear, and even felt guilty for not explaining my life away to this Person, and pointed out how extremely happy I am with Abe and Morgaine and Clancy; and how very different my life is now, both with those I love, and as a parent of one child with a disability and another with a metabolic disorder. Oh, you make it sound so simple, he said.

You make it sound so simple.

What, in that one sentence version of my life, I thought, is even remotely simple. And then proceeded to be furious. Luckily, it cleared my head, and I didn't feel obliged to answer or justify myself or explain.

It did, once again, remind me of the vividness and pleasure and passion in my life. It reminded me why red lipstick, ideas, conversations, work and a collection of coloured wooden blocks really can be a fine thing.

It also reminded me that it's quite easy to delete emails.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.