Ramping It Up: Children w disabilities, opinions, books

Hormones, uncertainty, work and friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Paediatric Intensive Care Unit

I had hoped to blog an elegant travel blog, with three weeks on the road north up to Cooktown.

Instead, after less than a week on the road we unded up back home, with Morgaine in the Paediatric Intensive Care Unit with pneumonia, after sever breathing difficulties, and having had her first ever seizures (possibly caused by high temp, low sodium, high CO2 - or maybe connected to her underlying condition).

Middle of the night to a small local hospital; then ambulance to Mackay A&E. The scariest thing Abe and I have ever experienced. When he started to cry I knew it was very very serious. Then watched 6 or 7 different doctors work on her for 4-5 hours straight, and finally intubate her etc.

Late that night a med team came up from Bris to get her; and I was able to go in the plane with the Royal Flying Doctor Service. Two nights of no sleep and feeling almost hysterical from lack of sleep and from absorbing so much about medical procedures and terminology. Also watched so many doctors try to put iv lines into her and failing. In the end they opted for medication straight into the bone marrow via a sodding great needle and little drill thing.

Abe and Clancy had to drive back - 900 km or whatever it is.

Still in ICU. Getting a bit better. It's Wednesday now; it all started in the middle of the night on Friday. Maybe they'll take the breathign tube out today.

Much to think about and reflect on; many fears to face; stories to tell. No time.

Periventricular Leukomalacia (PVL), or, The Trouble with Diagnoses

It started to rain last Tuesday. And when I say rain, I mean cats, dogs, dingoes, sabre-tooth tigers and various types of cat-shaped deities beloved of the pharaohs type of rain. Bucketing, pouring, torrenting, flooding. Or, in the Oz vernacular: It was faiiir-lee PISSing down. Gutters were gutted; creeks overflowed; roads were cut; football fields becamae lakes. And overnight, it sounded pretty wonderful on the roof, but seemed to freak young Clancy out a bit, so he had his first ever case of "night terrors", and woke every hour - or didn't wake, but cried and shrieked and thrashed about.

And so we get to Wednesday morning. "Eyes like piss-holes in the snow", as my little sister used to say. Abe had various high-level work meetings, of the crisis variety, so I was going off to the Children's Hospital on my own, Morgaine and Clancy in tow, to finally get the results of her MRI. It was raining to hard I could hardly see. Luckily, I've been to the hospital enough that I know which parking place to park in, so that although I have to walk through many buildings and labyrinthine corridoors, I can do it all while staying undercover. But did I say, fast? I hate being even a minute late for an appointment. Of course, I was on time and then had an hour to wait.

I met a woman, who was there with her mother - both in gorgeous saris with cardigans over the top, that classic Indian look that combines style and functionality - and her little girl in the zippiest zappiest pink manual wheelchair you've ever seen. The little girl had spina bifida, and it was a relief to meet such a positive little family. I've met a few other families with SB in the same waiting room, who have been unusually grim and depressing and a teeny bit peculiar. That was just them, obviously, nothing to do with the condition! And Clancy was remarkably patient.

So anyway, we finally got to see the neurologist. He had a young medical student with him, from Oxford, which meant he explained M's condition rather well and in great detail, and made it clear that yes, they have been a bit stumped, and yes it has been a bit of a mystery, and that's why we've done so many damn tests (merosin-deficient muscular dystrophy, Spinal Muscular Atrophy, etc etc all ruled out).

Then he took me through the MRI scans themselves, one by one. See there, he said, that's a dark spot on the brain stem. And yes, she does have enlarged ventricles. But the main thing, is the level of myelination. Myelin is the white stuff in the brain, which coats the nerves (I think that's how you'd explain it), and is about both making the central nervous system work, but is also about complex thinking and brain development. Her level of myelination is way way behind what it should be. (I think you call this hypomyelination.) It's at about the level of a 7-9 month old. There was also evidence of leukomalacia, he said.

My mind was starting to move very fast by about this point in the appointment. The medical terms were flying, which I don't really have a problem with, except interrupting occasionally to check how they're spelt, as I make notes in my diary.

And this is the point where, as an active and informed Medical Consumer, we're supposed to ask questions.

But as the neurologist looked at me expectantly, awaiting a question or two, it occurred to me that the real question I wanted to ask was: what form of speech is that? Is Leukomalacia a noun or a verb? Is it a process or a condition? And it's a little hard to frame that question. Because he really was speaking another language - and I don't just mean the latin that I didn't learn at school (Dapto High? I don't think so.)

So . . . it's all still a bit vague then?

No, he said, it's surprisingly clear I think. I didn't expect to see it at this MRI, but it seems clear that she does have Periventricular Leukomalacia.

Which means . . . ? And how . . .?

Which means brain damage that happened in utero, for reasons we don't know. (He suggested maybe from a faulty placenta. Or it could've been a virus or something. Mostly it turns out to occur with premie babies, which she wasn't.) And PVL (oh look, another acronym) falls broadly into the category of Cerebral Palsy - although hers is rare and of the hypotonic variety, and from what i've read it's in the severe end of that spectrum too - and the neurologist hinted that maybe that was something to think about rather quietly. A hint I didn't get because I'm an idiot. (In other words, think about it for a while and just shut up about it.)

Trying to absorb it all later (after the drama of driving home through heavy heavy rain, wrestling children out of the car and into the house, getting mobility device out of the boot, me getting soaked etc etc; discovering that not long after the roads all round the hospital were underwater and cut off and all that), I couldn't quite work out why I was so thrown and why I was so upset. Major disability? Nothing new there. Intellectual disability? On all rational levels already knew that. An easy label? Why does that feel so hard?

So in the spirit of transparency and blurting it all out, I immediately emailed all the relevant therapists at The Therapy Place, to say it was PVL. Then I saw the rather fabulous physio the next day, and that's when the regret started to kick in. Rather gently, she had to tell me, that this means M can't stay with the Therapy Place. Because it's CP, we'll have to move to a specialist CP organisation.

I'm devastated. Even though the rational part of me knows I shouldn't be. Even though Miz Phyz explained that at least this shows it's not degenerative; yes the neurologist said progress would be slow, but at least there'll be some progress; and with hypotonic CP, we should even meet some other kids who are more like her, rather than M being the one in the room always able to do the least, move the least, communicate the least. But the thought of having to start again, learn again, get the protocols and systems and advocacy and personalities and timings and resources and knowledge and politics again again again lead me to, yes, shed quite a few tears over poor Abe. Besides, I really like these people from the Therapy Place, I trust them.

So I let loose and gave myself a few hours on Thursday night to fall apart a bit; before resolutely heaping it all back in again.

But then I wondered, is there something else dodgy going on here?

While it's a given that there's something useful about a diagnosis, what does it mean that I've resisted it? Perhaps it's the idea of placing my girl in a box, a category, a carry-all: after all, CP doesn't hold any easy answers. Besides, there are many people with CP with no intellectual impairment at all, and comparing them to M won't help. I immediately remember a young woman I taught at uni years ago, who described the way her dad called her "twinkle toes", and it made her think affectionately of her twisted feet. Or maybe it's the thought of limiting M by seeing the category as too easy, boxing her in while ticking that box.

And Myff said, but maybe it's good to know that her developmental stage is at 7-9 months, rather than thinking that it's not, and she's trapped in there. That was a clever response, a thoughtful one, the horror of being too too aware of everything but unable to get those ideas or ambitions out. Like The Childhood Story of Christy Brown, which I read years ago for its verve and its energy and its sheer Irishness. His mother has sort of inspired me in this, her indomitable belief in keeping on trying, in believing in her kid, in trying no matter what. And I'm not about to stop, just because we've been able to look inside her brain to trace the white bits. (Although black humour has come back to bite me. The Childhood Story of Christy Brown was made into the film My Left Foot, where Daniel Day Lewis was renowned for his method acting. What my sister and I used to call the "strap 'em in a wheelchair and throw porridge at them" school of acting. Oh hah-de-fucking-ha-ha.)

Or is it all dodgier than that? Did I not want a diagnosis because something rare, unknown, mysterious, made us "special"? We watched Revolutionary Road on DVD the other night, a terrific and clever and deeply stressful film, about the horrors and mysogyny of 1950s suburbia, the "lives of quiet desparation" . . . and the delusion that they were really terribly special. Not like everyone else. Is that what we were doing, too?

Or rather, was that me?

Something unusual, something myserious, something that might be resolved like a Saturday afternoon movie matinee (throw off the lap rug, get to her feet, and say, Look, Ma, I can walk!); or go from observing, listening, being read to, participating in all of Clancy's lessons until the day she grabs his HB pencil and writes, "Hey, it's me, I'm in here"?

I hope not: that'd be me being vain and silly and unrealistic. But I think there's something in it. The mystery and un-knowing gave me space for extra hope and possibility. So I have to work out how to remake this label and category, to stretch it, to make sure that it also keeps that same space for optimism. I know I can do that.

Besides, it's stopped raining.