I won an award!

I'm Epilepsy Queensland's Carer of the Year!!

:D

DinnerDad nominated me and I actually won!

In a fit of irony, we couldn't go to the actual ceremony as we couldn't get a carer.  I was sorry to miss it, I've been feeling a tad flat lately, and a bit of fuss would have been lovely.

Still, an award!  Apparently there's a plaque, but I haven't seen it yet.  Will of course blow own trumpet and post pics when I get it.

An Award!

A poetic interlude

In posting-absence land.  Where I apparently live now.  Life is a bit sad and happy, up and down, full of small moments of horrible, and little joys. 

So I read this poem, and, not being one for poems in general (a shameful confession, I know), it accidently caught my attention all the way to the end.

So, here it is!

The Summer Day
Mary Oliver

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?



from New and Selected Poems, 1992
Beacon Press, Boston, MA


Indeed....

The things she plays

Oh, the sweetness of the girl, and the cleverness of found item play.  Here, she's a little cat, hiding, in a three-sided house built out of camping floor, topped by an array of tea towels and dish cloths.  She has been playing next to me doing this, very seriously and with much fun, for 45 minutes as I get my new (borrowed) computer up to speed.

It's heart-melty stuff.

O. M. G.

About the cutest thing, evah.

The construction.

Right next door, and important collection of "shoes and toys and a shark, because that's what a cat needs, you know!"

I am just so in love with that child.

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.

Things that make me a better parent: Part the Second

Pile of bouncing children.

We've had a few days quiet at home lately, and had lots of lovely friends to visit us.  We bounce on the jumpoline, and play in the shell pool.  By we, I mean the kids (mostly).  It's lovely, relaxed, and Lolly goes to bed tired and happy.  Friends are good to have.  They make so much of my parenting seem normal.

It's good to debrief, and confess, between ourselves, to our parenting fails (and parenting wins, which can feel like a confession, too).  And to get advice (or maybe just normalisation) on things that, perhaps, some parents would be shocked and alarmed at.  Like breastfeeding (not just for babies!), co-sleeping arrangements, how to get your kid to do stuff without threatening them, alternatives to traditional schooling, and all the rest of that hippy-arse stuff.

Oh and we always spend a goodly amount of time being angry (and hilarious in our venomous critiques) about the patriarchy.

Good times.

I come away being relived that, just maybe, I'm doing a decent job at this, and that at least I'm not alone.  Oh, and that losing my temper is not the end of the world.  And that my social critique does not go in vain.  I always feel better after getting my rant on.

It's like group parenting therapy, but free.  It's ace.

Reading Blogs makes me a better parent, Part the First

You know, when I'm thinking and feeling this parenting gig more, I'm in the zone, it goes great, I'm totally there.  Lolly and I are in sync and get along famously.  If I lose focus, revert to some crap behaviours or strange expectations, things go downhill and we both lose out.  One of the things that has kept me in the zone is the words of other parents.  About what to stay focussed on.  About what to expect from a three year old.  About being a parent and that sometimes that is hard work.  About stuff to do with her.  And how to think about how she plays and engages with that stuff.  About fun things.

For parenting awesome: blue milk; The Crazy Baby Mama.  Stuff to do, and thinking hard about how and why kids do it that way (or not): The Artful Parent; Teacher Tom; The Montessori Goldmine.  Check out more Montessori gems and ideas at What Did We Do All Day; A Bit of This and A Bit of That; and One Hook Wonder. 

Same with parenting a disabled child.  There are days it seems a never ending tragedy of epic proportions, and I swan about all "woe is me," beating my brow and lamenting and covering myself and my family with ashes* [*ashes are metaphorical].  Other days I'm more "oh yeah, whatevers" and "this is easy-pants!"  Sometimes those hair-tearing ashes days happen anyway, no matter how much zen crap I try about being in the friggin moment, but other times, reading something or thinking about something I've read can turn my switch from crap to slightly less crap.

NOT like this...

Now, I don't mean in a flowery unicorn shit way, about it all being some magical mythical journey and messages from angels and blah blah blah [that stuff generally makes me wanna get my poking stick out], but just a more settled feeling of "life, this is it."  In a positive way.  Some days you see the soul in the child more than the layers of shit to clean (and I mean actual shit), the trouble, the back pain, the near constant welling of tears (mine, not hers), the girl-sized hole in your loved-one's heart, the wheelchair, the sadness, the "look at my pretend seizure, Mummy" from the 3 year old, the actual seizures, the...whole fantabulous everything of what's wrong with this picture.

Official Poking Stick

Some days it just IS, it's not something sad or wrong, it's just a person with their own stuff, same as anyone, but more so.  My job is to help her out, give her some joy in her life, some respect, some love and some care, some family.  And it's easier, trite as it might be to say so publicly here on the Interwebz, to know that other people are out there, with their own people, and their own shit, dealing in their own ways.

Seriously, check out: A Blog About a Bloke; a moon, worn as if it were a shell; Blogzilly; Life with a Severely Disabled Child; the Flight of Our Hummingbird; and My Three Ring Circus.

So, upshot is, reading shit on the internet is good.  Not least of which that when googling images for "poking stick," I found the following:

More Like THIS.

Internet, I love you.


[Image source: poking stick]
[Image source - unicorn poker]