This is not a happy post.

I'm kinda over it, thanks Universe.  And I'm pretty sure Snail is too.

And so does the extra layer of awesome that is her hip subluxation.  Her right hip was sitting, on x-ray a few weeks ago, at 47%.  Her left one is at a comparatively "healthy" 38%.  That's not good.

Her right hip pops out of joint and she cries and cries, with this horrified expression on her face, because, can you even imagine what that must be like for her, how does she begin to process that, and you kind of have to get her hips and jiggle them (very fucking carefully), or try to lift her up, until it clunks back in.  Your heart is racing, and you feel like this is all too big and all too much, and maybe this is what ambulances are for.

Then she's okay.  It must hurt like...well...any-fucking-thing.

So I'm over it.  It's enough already.  She was already really fucking disabled, thanks very much: CP, mentally about 18 months old, incontinent, in a wheelchair, sensory integration problems, can't see well, etc etc etc.  Now she has fucking intractable epilepsy, is bombed on anti-ep drugs, and hips that dislocate at the drop of a hat, while doing things like, you know...walking, or standing up, or lying in bed, or having a seizure, or getting a poo wiped.  And you know what, it's not fucking fair on anyone involved.

You know, sometimes DinnerDad says that I didn't know what I was signing on for.  And I've always rolled my eyes, because I had known Snail for years, and always had a realistic view of her and her capabilities, and what it meant to 'sign on' for that as her step-mother, and that would be a lifetime of care.  And now, eight years later, well, I now I say that NO ONE knew what they were signing up for, when she was 4 when she could still move fast on her bum, laugh and smile, talk, she could count to three, and put two words together, and we thought, just maybe, she would use sentences.  Before her seizures started.  Even when they first started, they were infrequent and we never knew what they would eventually wreak on her brain, and how much her development would at first slow, and then move backwards, and some days, disappear.  And now this.  I feel like at the very least sound hips should somehow be fair. Though of course there is no consciousness out there deciding what the fuck fair is.  But whatever, this ISN'T IT. 

How are we going to manage her if / when she needs surgery, which, quite frankly, she does, given her hip pops out once a day?  What will happen when she siezes? How the fuck are we going to move her, or change her, or anything!!  Fuck.

 And what are we going to do with a girl who sits like this!! And who bum-shuffles around the floor as her most independent mode of transport!?   What will she do?  How will she cope?  How can we begin to get her through this?

I'm over it.  Personally, and on behalf of a 12 year old girl who certainly didn't ask for any of this shit to happen to her.  Who is sweet, and funny, and full of love and laughter, and who tries to smile at you when you're trying to put her hip back into place, and tears are streaming down her beautiful face.  It's fucking fucked.

The Foot of our Snail (with bonus rantings)

Snail has articulated foot ortotics to support her standing and transfers (and walking in her walker), and her current pair were as pinchy as anything as she grows and grows (kids do that).  We can't get a new pair til our Appointment of Mystery at CP Health (November!), so I hunted around and found a place that could assess them and stretch 'em for her in the meantime.  Yay!

The *boo!* part is how this place is about an hour across town from our house.  And that we'd already had a week full of appointments (including a doctor that morning) so everyone was buggered and over offices and prodding and poking (and having to take the three year old, who, despite her love of doctors, has a limit).

Anyhoo, we made it in one peice, woke up Snail's extremely grumpy sister, and headed in.  All this modification takes time, coz they literally have to heat them up and shape the plastic, so we were there for over an hour.  Everyone got bored and shitty, even the kids.

Snail says "really..."

Snail and her funny little feets!

Thank the gods they had DORA!

Snail is very bendy, sore, and tired, and Lolly watches DORA!

I bribe everyone into a good mood on the way home with "Old MacDonalds." (photo by Lolly).

Let me pause at the end of telling the blogosphere about this long (but productive) day, by saying that a) this over an hour adjustment of both orthotics only cost me $55!, but that b) our health insurance doesn't cover orthotics.  No, you didn't read that wrong.  Not because our health insurance is crappy, either.  Because most insurance covers all kinds of extras but doesn't recognise orthotics at all.

The equipment itself, may be paid for by insurance.  Maybe.  We usually have to put it under a kind of "miscellaneous" heading, but they did pay for her last few pairs.  But not any consultation or re-fit, or adjustment.  I'm sorry, what?

Basically, I can go get a candle wafted over me by anyone with a tafe course under their belt and get it paid for, I can get sports shoes (for a "healthier lifestyle"), but I can't get prescription orthotics for my profoundly disabled child, coz that's not...what...extra enough?  Medical?  Has anyone in insurance ever seen them?  FFS, people!!  My insurance covers acupuncture, chiropractic, massage, aromatherapy (!!), reiki (!), or kinesiology, but not orthotics.  I nearly blew a lobe.  I'm writing angry emails. 

At least the child's orthotics fit her (kind of) again.  And we had chips.  Calm. Blue. Ocean.

Why the census pissed me off

I'm a sociologist, so I'm usually loving the census.  It gives good basic demographics.  But filling in the census this year (and every time) gave me the shits.  It was the "do you do unpaid domestic labour" questions, and how the "care for others" wasn't set up to accurately guage whether that labour was likely to END, or exactly who it was FOR, or if it was for multiple people in your household.

I have a three year old, and wiping her bum and getting her food (etc) is going to finish one day, as she masters doing that herself.  Snail, on the other hand, won't.  But there is nowhere on the form to specify that your 30+ caring hours (the top level given) is for a 12 year old severely disabled child who you care for at your own expense, and at the expense of your own work, study, or whatever, with no government support, tax breaks, or wage.

So how is that going to help the government assign money for services or payments for me, or for Snail?  I'm not sure how they can tease out that those hours aren't for a small child.  I don't think they can.  So I'm invisible, and Snail is invisible, yet again.  

Anyhoo.

If not now, when?

You know, for a long time I didn't write much on this blog about Snail, because I felt like an imposter.  I read blogs about special needs kids, and I'd think, well, I'm not her MOTHER, just her stepmother.  And that is pretty much meaningless, out there in normal world.

Well, ya know what, I don't live in normal world.  I live here.  I've been changing, feeding, bathing, holding, playing with, dressing, cleaning, and all sleeping next to listening for seizures, going to school, doctors, hospital, therapists, with this child for eight goddam years.  You don't have to like it, or like me, I don't give a goddam shit about what you think of me as a person, but you have to respect that I'm a part of Snail's life.  Period.

Deal with it.