Valerie's Story
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A decade and a bit’s worth of very poor decisions were gathering like bin chickens near the dumpster of my life. Talky, staunchly feminist me had to face the fact I had let myself become a 1950s housewife without the house, the husband or any of the good frocks.

The first time I felt what I now think of as love was when I was a kid in Ireland in the early 70s. I was at the Cork Opera House seeing my first ever live theatre show. I felt the room buzz as the lights went down and I knew I was home. I belonged. I was safe. I was hopeful. I was six, and I knew what I would do with my life. I saw, for maybe the first time, people working with and not against each other. I saw commitment. I saw faith and family. These people believed in something and I wanted in. I didn’t care what job I did, I just wanted to be one of them. I wanted to inspire kids just like those people had inspired me.

Six year old Valerie knew exactly where her life was headed, and it felt good.

Cut to inner Sydney, 40 years later, and I felt the exact opposite.

One morning at 5am, after a lot of deliberation, my partner of 14 years informed me he was no longer able to sustain our relationship. I drove to a park, smoked a packet of cigarettes, vomited behind a tree and desperately tried to start making new plans.

At that point, I had established a career, a group of friends and a very confident outside voice. However,  I had a sum total of no control over my existence. No money accrued, no accessible support and a head spinning for a variety of reasons.

One morning at 5am, after a lot of deliberation, my partner of 14 years informed me he was no longer able to sustain our relationship. I drove to a park, smoked a packet of cigarettes, vomited behind a tree and desperately tried to start making new plans.

A relationship breakdown in your 40s is hardly exceptional. If I’m being completely fair, we’d been living like flatmates for the previous decade. It was less a great love than a workable arrangement. Lacking in warmth, but not unsafe.

But the logistics facing me that dawn in the park, far outweighed the sad realization that a lot of what I had done up to this very point was very very stupid. A decade and a bit’s worth of very poor decisions were gathering like bin chickens near the dumpster of my life. Talky, staunchly feminist me had to face the fact I had let myself become a 1950s housewife without the house, the husband or any of the good frocks.

Trust me though, there’s a good reason why - our beautiful child.

Our boy has an alphabet of diagnoses after his name and a heart almost totally made of gold. He defies the doctors with his presentation (just add ‘atypical’ to the medical words) and has skated too close to death too many times in his short life. He’s a delicate soul whose catchphrase is ‘beautiful things make me cry’, which is always delivered when his glorious blue eyes are overflowing. He literally knows everything David Attenborough ever said. He wants to travel the world and make documentaries about himself visiting zoos, despite the crippling anxiety that can make leaving the house worthy of UN Security Council level negotiations, some days.

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Our boy has an alphabet of diagnoses after his name and a heart almost totally made of gold. He defies the doctors with his presentation (just add ‘atypical’ to the medical words) and has skated too close to death too many times in his short life.

My son used to startle in-utero in a way that made bystanders giggle. After birth, he charmed us with his soulful stare and scared us with his visceral fear of sudden noises. His first diagnosis was ‘autistic tendencies’. This got us into Early Intervention and onto the rollercoaster of hope that one day we’d wake up and everything would be fine. At three and a half, he developed a rare autoimmune condition called Transverse Myelitis, which slowly took away functioning below the waist and just as slowly returned selected bits at will. He struggled at pre-school, was terrified by the early primary years and suffered horribly at the hands of ill-prepared but well-meaning educators. Around nine, he started having tonic-clonic seizures in his sleep that would rob him of movement, speech and inner peace for hours at a time. These seizures were eventually traced to a condition called Continuous Spike Wave Syndrome, an epileptic encephalopathy that stripped IQ points and physical skills systematically over five years. At almost fifteen, though the seizures have abated, he is riddled with tics, anxieties and fragmented ideas of a career with the BBC Natural History Unit.

During my ‘marriage’ I worked from home while simultaneously parenting. Through diagnosis; early intervention; school transition; a big fight in the human rights commission; medical crisis after medical crisis, I supplemented the family income with shiny, happy words for children. I was very fortunate to have translated a childhood talent for mixing glitter, mud and frog spawn into a career as a children’s theatre writer (first) and a freelance TV writer (later) with an eclectic mix of book/article/songwriting floating around the edges.  It wasn’t enough to keep us afloat, but it bought a lot of groceries.

...the creeping knowledge that I would now have to do the lion’s share of the everything is what made me puke with fear behind a tree. OK, it was the cigarettes but the everything didn’t help. I knew the majority of the parenting would fall to me, along with the need to earn a living.

Back in the vomit park that fateful morning, I definitely felt the loss of my relationship.  But the creeping knowledge that I would now have to do the lion’s share of the everything is what made me puke with fear behind a tree. OK, it was the cigarettes but the everything didn’t help. I knew the majority of the parenting would fall to me, along with the need to earn a living.

Full time care, full time parenting, full time educational supervision as our son can’t attend a bricks and mortar school, full time medical supervision, full time NDIS negotiation, full time jelly juggling.

Somehow. This had to be me.

As the first post-split days passed, we divided the meagre amount of money I was told we had. I found a rental. I bought a bright green car. And though I heard the promises of equal care and support and it will be OK… Dear baby Jesus, it was not.

The terror loomed quick and fast.

The fact there are only 24 hours in the day and not all of them can be spent with your high needs child if you want to eat or pay the rent was sobering enough. The knowledge that if I wasn’t there, I’d have to pay someone who would be, was almost too much to contemplate. No matter how I stacked up the blocks, they all fell down pretty quickly. I had no idea how my son and I were going to survive. All I knew was that we had to, and love is all you need (I may or may not have been obsessively chanting Beatles lyrics at that point).

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Somehow, I am surviving. It’s a delicate balance. Keep money coming in. Cut costs. Advocate for change. Investigate alternatives. Go, ‘screw this’ and have some fun. Hide behind a door and cry. Pull a giant rabbit out of a hat. Find another way. Rinse. Repeat.

A year passed in which I cried rivers and drank buckets. I also lost my Mum that year, which still seems irrationally unfair.

The next year, I met a man who very tentatively dipped his toe in my ocean of chaos and didn’t run away immediately.

A third year went by in a blur of lifeboat jobs and frantic plans.

As year four is coming to an end, we are almost sailing our own ship. Our financial future is blurry, my spare time is compressed into tiny diamonds but we are definitely surviving. For now.

So, where’s the finding myself bit?

Funnily enough, I think it’s mostly in the words.

Sometimes (OK, a lot of times), I wake at 5am and I write jokes for puppets.  I carefully twist childhood discoveries into 90 second vignettes. I compose grandiose promises that television can never keep (though it always tries its best). My days are a quilt of cooking and carers and critiques from far away script editors. Then I go to work dressed in smiles and apologies and outrageous jokes which hopefully distract from my lack of real availability.

All in all, people are understanding. They’re increasingly bored with my life limitations (as am I) and increasingly distant from my life (see above note about availability). But mostly, people say, ‘I don’t know how you do it…’ a lot. And the reality is, I don’t.

I drop all the balls all of the time. I pay late, I submit late, I go to sleep waaaaaaay too late. When I am alone, I am often so angry I cry, or so sad I get angry. Luckily, I am not alone, a lot. My realistic options for prosperity are a Lotto win or a bored, benevolent billionaire and as much as I try, neither has materialized. I have lost more than I thought I ever had,  in the last four years.

And yet I’d say there’s a net gain.

I’ve found a way happier, braver, sexier me in all of this which is a serious bonus. Time pressure (and lingerie) can do marvellous things for a girl.

Somehow, I am surviving. It’s a delicate balance. Keep money coming in. Cut costs. Advocate for change. Investigate alternatives. Go, ‘screw this’ and have some fun. Hide behind a door and cry. Pull a giant rabbit out of a hat. Find another way. Rinse. Repeat.

Now, through the week, I spend my day working and my son spends his days with carers. It’s a huge, expensive, anxiety smashing change from what life used to be. And it’s good - for both of us.

I’ve found a way happier, braver, sexier me in all of this which is a serious bonus. Time pressure (and lingerie) can do marvellous things for a girl. Also I have a treadmill, an actual one, that I run on at home. It marks time with the figurative one my life runs on. For 30 minutes every day without fail, I lose myself in sweat and a podcast. 10,000 uncoordinated leaps for Valerie-kind a day.

And there are always the words.

In my dreams, I will still create the next Sesame Street. With the same sense of home I felt in the theatre as a six year old, I imagine a safe, inspiring, primary coloured digitally delivered future. It will be full of progressive characters, helpful technology, diversity, inclusion and fart jokes. Perhaps the odd antelope to appease my son. It will be useful, needed and positive. It will change the world.

If my boy and I don’t change it first.

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