An official recommendation is made for assessment by an autism team and while I’m coping, it’s all a bit much.

She bounces off the walls, sensory seeking, frantically jumping and leaping and running and falling and laughing too loud and too hard for too long. She avoids my eyes and runs away and hugs me like the world is ending, clinging to my shoulders, trying to scale me like a jungle gym.

I drag her outside to jump on the trampoline and run and swing.

It helps.

For a while.

The sun shines brightly, but the wind is cutting and while she doesn’t feel it, I do and I shiver as I push the swing.

We check for eggs, she races around, she falls over and laughs.

I read about autism and aspergers and remember Amy’s first year, a first year I’ve blocked out for my own sanity. A year of screaming, of arched backs, of refusing to be consoled, to breastfeed, to play.

***

My son screams the scream of a frustrated toddler. He has wants and needs and I’m not meeting them fast enough.

8 hours of tantrums later, a small giggle escapes him as I take time to tickle him.

Two white points pushing through his top gum, two angry swellings on the bottom. Teeth. More of them.

His tantrums continue, interspersed with happy chats on my lap.

My head aches.

***

My partner hurts his back and tries to drive me to an appointment the day afterwards.

Half way to the city, his back seizes and he pulls over, stuck, screaming, in pain.

20 minutes later an ambulance takes him to hospital, leaving me and the children behind, on the side of the road. Stranded; I don’t drive.

My father-in-law and brother-in-law rescue us. I’ve never been so relieved to get home.

My partner makes it home later that night, a prescription of painkillers in his hand.

A week later he still can’t walk much, or move, or help around the house.

***

It’s too much when my daughter bounces and screeches and my son screams and my partner winces and it feels like all the balls are up in the air, waiting to fall in a heap.

It’s too much.

And while I know it will be okay and our families are helping lots, it doesn’t help when I’m on my tenth tantrum and my eighth meltdown and no one can help.

I’m overwhelmed and planning on spending a week in bed when this particular hell ends.

With chocolate.

A lot of chocolate.

A snippet of memory, dredged up.

It changes.

A birthday party. Laughter, good food, good company.

I turn and look at my grandmother, there again.

But, you’re dead. You can’t be here.

She smiles at me and disappears. Crying, I wake up.

***

I’m standing under the shower. It’s late afternoon and the air is chilling down. My shoulder is throbbing and my ribs are dislocated. Water streams down my body while I hug myself, desperate to hold my joints together for a little longer. The pain makes me retch.

I’d been reading a Dick Francis novel before deciding more painkillers and a shower were a good idea.

It’s funny the things that I remember from my childhood.

Dick Francis novels and late afternoon showers at my grandmothers were a normal Sunday routine. Despite my partner peeling potatoes in the kitchen and the sounds of my children playing, I am 13 again,  standing under the warm water at my grandmothers, taking advantage of her running water – something we don’t have at home.

A sharp squeal brings me back to the present, a present of pain and nausea and screeching children.

The water washes away tears.

***

They told me this would get better. Easier.

Like everything else it seems though, it doesn’t get easier, it just gets different. It only takes something very small to send me back to that world of pain, where my heart aches and I am broken.

I breathe and I smile and I live.

But it’s not easier, it’s just different.

Again.

It feels like a kick in the guts, like someone walking over my grave, a shiver, a shudder. I am surrounded by ghosts of might-have-beens and if-things-had-been-different. They tug at my clothes and my hair, flitting out of sight when I look too closely.

***

You were meant to be here, helping with this.

You weren’t meant to die.

Everything is falling apart and you weren’t meant to be dead for this.

Do you hear me? You weren’t meant to die and leave us to deal with this alone.

***

One foot in front

and then the other.

Repeat, ad infinitum.

It won’t get easier, but it might get different.

I’m overwhelmed and unprepared for this.

Even though it’s been coming

for months

for years.

***

Things fly up and smack me in the face. I didn’t think of that. Why didn’t I ever notice that before?

The world falls down around my feet and I’m walking, crushing everything and I don’t want to be.

***

It’s cold outside, a veritable wasteland of winter. The rains come and everything turns green overnight, a stark change from the deathly yellow we saw last week. I want to sit in the sun and breathe in the smell of summer. I want to watch my children splash in water, to drip peach juice down my chin, to baby a garden through the hot weather.

I want warmth and growth and the smell of hot grass and sweat.

I want to lay on the grass and sob, to have the sun dry my tears as they leak from my eyes.

Instead, it’s cold and icy. The wind cuts through me like a knife, leaving me jagged.

And we are stuck inside again.

She sings as she walks along the back of the futon. Look Mummy! I am balancing! Like an elephant!

Everything she says ends with an exclamation mark and she takes a few more steps before slipping and hitting her head. Tears leak on my shoulder as I hug her. Maybe you should stop balancing. For now.

Yes. I should.

Her exclamation marks stolen by a slip.

***

A frost filled morning gives way to a sunny day and the wind slices through me like a knife. I check chooks and count duck eggs. I walk across the paddock, frozen grass crunching under my feet. Behind me, a trail of poultry runs, a steady thump thump thump of webbed feet, hoping that I’ll magically produce some wheat.

Only I’ve forgotten to bring it.

I disappear inside and the ducks stand forlornly at the gate, waiting for my return.

***

I feel like a grey elephant, walking along a wire.

Every time I call for another elephant to join me, I slip a little closer to the ground, a tiny bit closer to falling.

I’m not sure what’s down there anymore.

Grief and pain and anger.

I think.

A giant hole where my insides used to be opens up and wind whistles through me like a tunnel.

I supermarket and prepare for the new puppy coming home, her adoption finalised before the loss of her playmate-to-be. I fill my partner in on what I bought and he looks at me -

‘You get over dogs fast.’

Tears fill my eyes and suddenly I am angry, because no. I don’t get over things. I just don’t cry, or wail, or gnash my teeth.

I want to scream and yell

My grandmother died 13 months ago and I’ve cried twice. Twice for a great yawning hole that opened in my heart. There was no time to fall apart then, there is no time now. What makes you think I don’t feel it, just because I’m not screaming?

Instead. I say

‘I don’t get over it. I just get on with it.’

***

Losing one dog is unlucky, surely twice is carelessness. We are berated for the things we didn’t do correctly, or should have done instead. Everyone has 20/20 hindsight.

***

Unpacking the groceries and the thud of another grave being dug vibrates through my footsteps.

Milk

thud

Cheese

thud

Collar

thud

Make my son a bottle and put him to bed. Make my daughter something to eat. Wipe the counters.

thud.

Until we all stand around a grave and solemnly put the dirt back from whence it came.

Again.

This is how it starts. A drop falls and leaves a wet patch that chafes and irritates me.

A second drop falls, followed shortly after by a cup of water thrown on my head. Gasping, I look around, soaked to the shoulders and wondering where it came from.

Before I know it, I’m in the middle of an icy ocean, fully clothed and wondering where the fuck my shore is. Shaking, cold, I swim towards the light until I can drag myself out of the water, to stand, dripping and shivering; sand caking between my toes as my teeth chatter a rhythym.

That is how it ends.

The trigger is something different each time:

A waft of perfume;

a photo on the wall;

a stray thought that I can’t shake.

A trigger that once pulled, drags me towards it’s culmination.

Sometimes, I walk silently, waiting for the drip.

Other times, I scream and wail; kicking and screaming like a child.

I’m BUSY. Can’t you see I’m busy? I don’t have time to swim right now.

FUCK YOU.

It’s inevitable; the drip.

This is what soul pain is. It starts with a drip and ends with a slow icy slog towards shore, knowing that you’re going to be cleaning sand out of your toes for days.

And you never know what your trigger will be until it hits you, like a brick wall at high speed.

SLAP.

No thought for what you were doing, suddenly you’re swimming.

Again.

Just stop,

Take your moment; this moment and stop. Breathe in and savour the smells of living and stop thinking, because the world is likely to overpower you with it’s wrongness.

With the wrongness of a 6 year old not knowing what a tomato was, with the wrongness of a chicken living 39 days from birth to slaughter, with the wrongness of oil spilling into the Gulf and the cheers when the leak is stopped, but why are we cheering? Aren’t there still eleventy million barrels of oil floating on the water down there? Aren’t there still pelicans suffering and turtles being burned and a journalistic silence being held?

Why are we smiling?

Because it could have been worse.

Worse? It is worse. THIS is the worse.

When the spill was stopped, we shouldn’t have cheered. It was not a success. It was a chance to just stop and breathe out.

In relief.

In disgust.

No cheers, because things are still broken. Stopping the spill is not better.

Things are not suddenly fixed.

The wrongness is still there, lurking under the surface, tainting the smell of seagulls with a darker undercurrent.

When hormones can produce you a chicken for eating in 39 days, we should not be cheering for profit margins and congratulating ourselves on a faster turnover. When did people become removed from suffering? When did we become so overloaded with wrong that we couldn’t see for the dark? When did humans lose their humanity?

But, but there’s too much. I … I can’t.

Stop.

Just stop.

Take measure of where you are and breathe deeply.

When the tipping point comes, when you say ENOUGH and you stop.

Then stop.

Instead, I took him outside to join his sister in running around the paddocks.

And the look on his face was worth it as I opened the front door and he, newly clad in bright blue gumboots, clomped out to join his father.

It was worth it when we grabbed some wheat and fed the chooks and ducks, together.

It was worth it, to hear him calling duck-duck-duck-duck as he tried to chase them a little.

It was worth it.

He spent the first 10 minutes we were outside happily exclaiming ‘am ow-side! am ow-side!’

He chased a duck and paddled in the water. He stomped through a mud puddle and ran around the tyre arena. He helped to check for eggs and chased his sister.

And finally, he asked to be picked up and we came inside, to eat lunch and nap.

It was worth braving the cold and bitter wind. It was worth not getting to write what I was going to write. It was worth not curling up with a book.

It was worth all that, just to see his face light up as he called ‘Am ow-side!’ to me every few steps through the grass.

Seems I’m not the only one who hates the indoor isolation of winter.

And we’ll be going ow-side more often.

No colour for me. Not today.

It’s the kind of weather that seeps into your bones and sinks fingers into your soul.

Frozen pipes herald the middle of winter, when you turn the tap and nothing but icy air appears.

Even as I warm up and the world defrosts, I feel frozen inside.

***

It’s like a clock ticking.

tick

tock

tick

tock

Twelve months ago she was alive still.

Twelve months ago we had nine days left. We didn’t see the countdown hanging over our heads, hiding just out of sight. We didn’t see it then, but I see it now.

***

I sink myself into my archives from June last year.

I survived that.

How did I survive that?

My body takes over and leaves me moving, one step at a time.

Don’t think, don’t count, don’t look at the calendar. Turn the music off, pull your eyes away from there. Don’t listen, don’t feel, don’t think about it. Keep your eyes focused, smile, laugh, your mind can’t go where you don’t send it. Be matter of fact, keep your practicalities. We need more sugar, who spilled the milk, where did that nappy go? What’s for dinner, who’s peeling potatoes, can I have a hand? Amy get down, Isaac shush, Mummy needs a moment. Don’t think, don’t look, don’t make any sudden movements.

We can do this.

One step at a time.

tick

tock

tick

tock

One step. And then another.

We’re moving closer and I’ve forgotten how to breathe.

***

What was I doing twelve months ago?

You were surviving.

How?

I don’t know.

***

Life is hard.

No wait, scratch that.

Living is hard.

But it’s also beautiful.

Click image to see it bigger.

It’s going to be interesting.