Thursday, October 27, 2011

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.


Stacey said...

:(. It's not fucking fair. No words can make it better. Love to you and Snail.

Anna said...

I have tears just reading this. For you. And for Snail. Because I know only too well how fucking hard it is sometimes. Thinking of you and really wishing I could say something that would make it all right.

Elizabeth said...

Oh, my god. I am so sorry. I'm praying and hoping for mercy.