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.

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.

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.

But he’s the baby I think. Who gave him permission to grow up?

He stands, laughing and clapping and walks the length of the room to get to me. I scoop him up and spin him in a circle, before he bites my shoulder and gets put down with a thunk.

He laughs again and stands, walking towards the other side of the house.

Wow. That time flew.

I swear, I only gave birth to him a moment ago. Not that long, surely?

***

They are screaming and I am stressed. Grabbing my camera, I escape the noise. Heading outside, I leave them to their father and disappear to reclaim my sanity from the other side of a macro lens.

I find bugs and flowers and then I return, wind chilled and flushed red – but happier. Always happier.

I adore my children with every ounce of my soul, but I scream to be more than a mother.

I want to be a photographer, a writer, an author, a blogger.

But my children are young and they’ll only be this small for a short amount of time.

I put aside my own wants and needs and make time for them, to roll around on the floor and nibble toes and elbows.

However, for 20 minutes a day, when I am in front of my computer immersed in words, or outside taking photos,

I am more than a mother.

And that makes me happy.

My brain works and I taste the words on my tongue, playing them through my mind. They fall from my mouth, whispered, like jewels and I swallow them back up again, not wanting to lose any.

‘What are you doing?’ says my partner. ‘Are you hiding?’

‘No. I’m brainstorming’ I mumble. My head pops up and I look at him, cupping my chin in my hands. ‘I’ve already had a shower today, so I can’t go and brainstorm there, can I.’

‘Oh. Okay’ he says and wanders off.

I had words, before. A whole post full of words, beautiful words, strong words. I just hadn’t written them down yet. I was busily running them through my mind as I picked up toys when a harmonica drilled it’s way into my ears and chased all the words away.

I can still hear it, that damned harmonica.

Innnnn ouuuuuut innnnnnn ouuuuuut and SQUEAL!

I bury my head back in my arms and try to return to my words, but the spell is broken. My son crawls over and pulls my hair and my daughter continues to suck on that dammed mouth organ.

Standing now, I head to my computer, hoping to salvage something. Anything.

It doesn’t work, not really.

Behind me my partner switches on the vacuum and watches me typing and ignoring the housework. His gaze makes my hands trip over the words and glaring at him, I snap the laptop shut. In reality, he probably wasn’t watching my words, but I can’t work anyhow.

I stand, allowing him to vacuum underneath my desk before he heads off in one direction and I sit back down to harness my wayward words, like small flighty creatures they dart off before I can get my hands on them.

In the background, the vacuum cleaner hums still and my daughter screeches my name, imploring me to ‘let her iiiiiiiiiiin’. My son giggles at her.

It’s hard to write here and now.

But I do it anyway.

My son hands me a handful of half chewed pasta. Wrapped around his fingers are more strands of my hair. All the vaccuming in the world never picks it all up.

I have a lot of hair.

Or should that read I had a lot of hair.

***

The hospital rings me while I am in the car. I strain to hear her voice over the top of the traffic sounds and my children, whining, contained in the backseat.

‘We’ve got the children’s genetic tests back.’

‘Okay, have you got the results?’

‘I’m sorry. I can’t tell you over the phone, you’ll need to come in and see us.’

‘Oh. Why is that? It was only meant to be looking for the gene that causes coeliacs, surely it’s just a yes or no answer.’

‘The test results are quite involved and complicated. You need to discuss them with Head of Paeds.’

‘Oh.’

I feel sick and cold all at once. It was only meant to be a genetic screen for Coeliacs. It’s not involved or complicated. Yes. Or. No.

‘You have an appointment in June don’t you?’

‘Yes, that’s right.’

‘Well, ideally we’d like to see you sooner.’

‘Yes, that would be good.’

Sooner is never good news.

‘But, as you can imagine, we’re heavily booked. I’ll see what I can do for you.’

June is a life time away. I’d like to see them tomorrow, but that’s not possible. What else have they turned up, that she can’t give me the results over the phone, when I was told that I could ring to find out whether the children have a coeliacs gene or not.

‘Are you sure you can’t tell me if they screened positive for the Coeliacs gene? That’s all they were testing for.’

‘I’m very sorry. Like I said, the test results are rather involved and you need to see Dr. B about them.’

Dr B. The higher up of higher ups. The Paed we never see, whom our regular paed leaves the room to consult with occasionally. The one in charge of all the major decisions. Him.

‘Okay then.’

‘Okay, we’ll try and get you an appointment sooner.’

Inside I panic.

Outside, I rely all this information to my partner, who has listened to one side of the conversation while he drives.

We’re worried now, they were only meant to be checking for Coeliacs, nothing else. Nothing that would warrant an appointment with the higher ups.

***

I sit on this information for over a week without thinking about it, pushed down to the bottom of my mind, until it bursts free this morning, leaving me stressed and strung out.

My mind spins in circles.

They were only meant to be testing for coeliacs. Nothing else. EDS wouldn’t show on a genetic screen, not enough information has been compiled for doctors to know which gene is broken in EDS.

***

I turn the music up loud and sing, badly.

Anything to make my mind switch off.

Because I’m worried. Really worried.

And to be honest, we’re already dealing with enough fucked up genes, I’m not sure I can take much more.

But I don’t want to. I’ve got nothing to write about, everything has been boring.

I don’t care. Just write.

Just write.

So I sit down and I just write and it’s not very good. And I poke at it and prod it and it’s still no good. I turn away, disheartened, and something inside screams that I need to keep writing and work through this block.

I’ve got all sorts of good ideas you see, but I pitched to a parenting magazine today and in the event of them wanting something from me, a minuscule chance, I don’t want to have used any good material.

Stupid, I know.

***

The baby turns into a toddler with the arriving of his birthday. He stands on his own two feet and steadily makes his way around the furniture. He pulls a toy table over to the kitchen gate and climbs on it. For a moment, he hangs in the balance, tall enough now to topple over and land on the kitchen floor.

Another moment passes and I’ve caught him, whisked him up into the air, alternately growling and cuddling him; my heart beating a little faster as I run through the what-ifs.

He screams as I put the table away. I’m not prepared for him to be climbing baby gates yet.

Instead, he climbs onto the coffee table and sits there, looking pleased with himself, bouncing and clapping.

At least the coffee table doesn’t wobble precariously.

***

The toddler turns into a preschooler, one who argues and has conversations with me, all in the same breath. She asks when we can go to school and when we can go and play on the slide. She wants to have a birthday every day and she sighs, visibly disappointed when I tell her that today is not a birthday.

She walks away in a huff, flipping her hair as she goes and I can almost see the shadow of a teenager hanging over her head, flouncing out and exclaiming that I’m ruining her life forever.

Not forever sweetheart. Just right now.

***

Everything is changing, slowly but surely.

Proof that life moves on, regardless.

It’s just past seven months since Nan died and inside, I can feel it, a ball of grief, hardened and immobile. If I ignore it, it doesn’t bother me, but poking it threatens to bring this whole house of cards toppling down on my head.

I wished I could ring her today, as my children screamed around me and the world spun while I reminded myself to breath. As I felt that familiar feeling in the pit of my stomach, that feeling of fear and dread and not knowing.

I wanted her here and there was nothing I could do about it.

So I did what I always do.

I ignored it.

I put the baby to bed, I cleaned out the horses water, I taught the puppy to sit. I fed the horses an extra slice of hay and I aimlessly clicked around the Internet. My son slept on and my daughter threw herself across my lap as I typed, watching the way my hands moved across the keys.

I breathed deep.

And I ignored it.

That’s probably not the best way to be dealing with the grief.

Here-ya! he says delightedly as he shoves his hand down my throat, trying to feed me his biscuit. It’s soggy and a little mushed, but he is thrilled when I pretend to nibble it. Silly idea, as he promptly smears it all over my face.

Here-ya! Here-ya! A mashed together word, meaning ‘here you are’ or ‘here you go’. I try not to mash my words together too often, but hereyouare just happens, without breaks in the middle of it and he picks it up. Easy to say, easy to remember, he adds it to his list of words.

Not that I expect he has an actual list. He’s a baby and even the smartest baby is mostly daft.

A hole! Let’s put my finger in iiiiiit WAAAAIIIIIIIL.

Silly idea kid.

They never listen, babies.

***

He started as a ball of moulded flesh. Vaguely alien like, I birthed him and he was mine, ready to be shaped into whatever I wanted, so long as that shape was a little boy.

***

This morning as he screeched his displeasure at having his nappy changed and threw his breakfast across the floor because it wasn’t what he wanted, I was struck by a thought.

My baby. He’s turned into a toddler.

I’d be lying if I said I wasn’t a little sad.

He’s gone and grown up, with his own personality. He has wants and likes and they don’t always coincide with mine. For now, I am bigger and things like clothes and nappies are non-negotiable, but soon, my opinion isn’t going to be the one that matters.

***

He’s smart and he is clever. He can pull the wheels off toys and chew on them, he can climb to the top of the couch. He knows how to steal food from his sisters plate and he can almost get into my bra by himself. He talks and slowly his words take on meanings, rather than just baby babbling. He knows to crawl as fast as he can when the baby gate is open, to seek the freedom of the kitchen and then, outside.

But he still falls on his head occasionally when trying to climb down from the couch. He hasn’t learnt to fear heights and the falls accompanying them. He doesn’t remember that last time he played with the drawers, he slammed his fingers in them and this time, he’ll probably do the same thing.

That’s my job – the job of safe keeper. To prevent the falls, to watch him in the slippery bath tub when he stands up and claps, my breath baited and hands ready to catch him at a milliseconds notice. To leave pillows on the floor next to the couch for a safe landing and to either wedge the drawers open or shut, depending on their contents.

He’s bridging that gap between baby and toddler, faster than I’d like. He gets into mischief and laughs about it. He is my tiny little ball of energy, who follows his sister around like she is his God.

He is growing up.

For now though, he still needs my hands, ready to catch him.

Because at the end of the day, he’s still a baby and we’ve got a lot of learning left to do before he figures out what this world is all about.

My father, stands on one side of the room. I stand on the other, with the baby crawling at my feet.

My daughter, in the middle of the lounge room, earnestly starts talking.

We will go see MyNanny in the hospital! And she will get better. She will come home and she will play with me.

She looks at me.

Mummy, we are cleaning up MyNanny’s house for her. She will come home soon and we will play with bubbles? MyNanny is not very sick anymore. The doctors will make her better!

I glance at my father, the same time as he glances at me. Normally, I talk to her about MyNanny and how she died. That she won’t be coming home. That she is gone and we’re very sad.

Today though, I can’t bring myself to do it. Not here, standing in the emptiness of her house.

Mummy. MyNanny will come home!? And we will play together, with bubbles! And she will not need to be in bed anymore. We will help her get out of bed. And then we will play!

Tears well in my eyes and I can’t bring myself to talk. I bend and sweep the hair out of the baby’s eyes. My father and I look at each other. Then,  I change the subject for my daughter.

Sweetheart? Show Poppy where you hurt your arm.

Look Poppy! I hurt myself. I did fall.

Mmmmmm, says my father. Ouch. How did you do that?

I fell!

She fell. I say. Trying to climb on top of the closet, using the couch arms and a pile of linen.

Oh.

Crisis averted. We’re not crying anymore.

At least,

not on the outside.

You were born in a rush, a hasty exit that we weren’t expecting. I put my hands down and caught you myself, bringing you up to my chest. You screwed up your face and screamed at the indignity of it all, being thrust from your haven of warmth into a world of nakedness and cold, of bright lights and voices unmuffled by amniotic fluid. I held you close and whispered to you. They clamped your cord and I cut it myself,  making us two separate beings, no longer one person in two bodies. I had held you within my body for nine long months, now it was time to hold you without.

I watch you now, crawling across the carpet, racing away from me as I struggle to dress you; change you; inflict my will upon you. You have your own wants and they don’t always mesh with mine. I want you to be warm and comfortable, I want you to be happy. You want to be left alone, to not be poked, prodded and removed from the electrical outlets.

You pull yourself to standing and look at me, pleased with yourself. Clapping, I tell you how clever you are and we move on from there, your increased mobility helping to leave the traces of baby behind.

Of an evening, I snuggle you into my breast and feed you, the curve of your head matching the curve of my exposed skin. You wiggle around, contorting yourself into new positions without my help, getting yourself comfortable before sighing and falling asleep, my nipple still in your mouth.

I savour these moments, knowing that you’re growing up faster than I ever imagined.