Time to fly

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Just in case you were wondering what I’ve been doing since my last post in August, 2016, here is a little preview of my soon-to-be-published book, Amelia & Me. You heard. The job is nearly done and I’m ready to take it to the bank. Or the library. Seriously, I will bring it to your house.

I’m so proud of the final cover design which I think hits all of the right notes for our very personal story. It was really important that the main photo of me and Amelia should convey our closeness, our directness. We look at the camera the way we look at the world – front on and without flinching.

It’s been a wonderful process over the last ten months pulling over three years of writing together into a manuscript and working with awesomely clever self-publishing, editing and creative people to realise my dream. It takes a village, or at least a super cooperative hamlet.

So, watch this space like a hawk. The proof is in the, well, the proofs. I’m about to finish my final edit before I hand my baby over for printing. It’s scary and exhilarating and I can’t wait.

It’s time to fly, my friends. Don’t look down.

 

The divine Miss M

Big things come in small packages

Big things come in small packages

I LOVE how easily little children fall in love with things; their joy in new experiences and people.

This is especially true of my intense seven-year-old Amelia who hasn’t yet learned to play her emotional cards close to her chest.

She crushes hard on her toys, on newly-met kids in the park and writes passionate letters (and emails and text messages) to her teacher: “Miss S, I love you so much.”

Our home is littered with tender notes left on side tables, Valentines slipped quietly into pockets and drawers.

Then, there is M, our 16-year-old neighbour. A gentle, dark-haired girl who waves to us in the garden and once picked a red flower, passing it to Amelia over the short fence that separates our houses.

A rose by any other teenage girl would not smell nearly as sweet. And with that flower she did win Amelia’s sweet heart. Like, forever.

A few weeks ago, I found Amelia outside, pressed up against the fence, calling M’s name into the cooling night air. “M! Where are you?” There was a note of shyness in her voice, but there was hope too. Lots of hope.

Before I could wrangle her back inside, M suddenly appeared. She said, “I thought I heard you calling me! Let’s play a game.” And over our little fence, M joined hands with Amelia and showed her how to wrestle thumbs. They chatted and laughed together before parting ways.

It was a fleeting interaction, but it meant so much to Amelia. It solidified something growing steadily inside her. That longed for connection with another human being – friendship. She has so much love to give but not always the facility to show it or receive it.

Soon after, Amelia drew a special picture for her new buddy M. She spent a long time on it and together we put it into a special envelope covered in stickers and hearts. I said, “Should we go and give it to her now?” Um, is the Pope a Catholic?

M wasn’t home, so we left the letter in the safe hands of her younger brother. I forgot about it until the next day after Amelia went to school. I checked the letter box for the daily mail and instead found a small gift box and card inside.

It was addressed to Amelia, from M. I carefully took it out and held it in my hands, as though it was fragile, precious. And it was. I’d been worried Amelia’s intensity might be annoying to our teenage neighbour, but I was so, so wrong.

I put the gift inside, ready for its lucky recipient to return home. You’d be forgiven for thinking the present was for me, the way I paced around waiting for the school bus to arrive in our street, desperate to see its secret contents revealed.

FullSizeRender-1Amelia finally came home and I greeted her with the news falling urgently from my lips, “Baby, M left you a present, it’s inside!”

Her eyes widened in disbelief. “M? For me?”

“Yes, for you! Let’s go!”

We ran together into the house, jostling to reach the little box veritably pulsing with life on the kitchen bench. The card contained a beautifully penned thank you note from M. Amelia’s picture had made her day, so here was something in return. Just for her.

Inside the box was a silver chain with a pretty circular pendant depicting a tree. A thing that grows. Like the friendship between a loving deaf, autistic girl and her sweet teenage neighbour.

They are separated by nearly ten years of age and the small fence that separates our houses. M doesn’t always understand what Amelia is trying to say, and my little one misses plenty of sounds and what they mean.

But these things are not barriers; the distance between Amelia and M is remarkably short. When they touch hands and laugh and send each other letters they are just two girls reaching out to each other and finding a friend.

The greatest show on earth

Trapeze girl

Super trapeze girl

WHEN I see Amelia swinging atop the trapeze, back straight, eyes clear and true, I think: “Anything is possible.”

I don’t think about the time I tried to take her to another circus class someplace else and they said no. No, because she’s deaf and autistic and it was all too hard. My daughter wasn’t worth the effort.

I don’t even think back to the day I took her to a soccer clinic and she lost it, running across the pitches to avoid me, screaming and yelling.

I kept falling over in my desperate effort to catch her, to get us out of there. My legs were grazed and people stared. Their eyes said, “Thank god that’s not me.”

After an eternity in hell, a burly, tattooed man helped me carry her away to our final point of collapse on the nature strip. I held that stranger’s hand so tight and cried enough tears to flood the street.

I forget his name but not his kindness.

My mind has moved on and carried me elsewhere, to human pyramids and balancing acts. To death-defying feats like the tentative first steps taken on a wire.

To a place where a young woman has learned some Auslan without being asked just so Amelia can be more involved. I want to hug her for the longest time.

To Thursday nights when we drop her off in the safe hands of her new troupe of friends and we don’t worry.

It really wasn't the greatest show on earth...

It really wasn’t the greatest show on earth…

We sneak a peek at her from the doorway, transfixed by her form sitting shoulder-to-shoulder with kids her own age.

She watches everything like a hawk and is not afraid to try. Suspending her strong body from brightly coloured sashes she looks weightless and free. So are we.

We don’t want a lot more in life than to see our child happy and healthy and safe. To be able to join in and feel included. They’re basic things but what else could be more important?

Nothing. In our world we’ve learned to appreciate the smallest of triumphs. Like the look on Amelia’s face when we pick her up at 6pm and she’s flushed from the fun of it all.

We dreamed of this for her and now we are here. Our little girl’s run away to join the circus but she has our blessing along with our hearts.

Shock and awe

Drawing strength from his little girl

I DIDN’T tell her everything.

How could I? It was hard enough to hold the trauma of it in my own head.

I didn’t tell Amelia that her Daddy had collapsed at the hospital, on the hard, cold ground of the car park.

That I thought he’d fallen over behind me until I saw the way he was lying, arched forward in a twisted ball of agony.

I didn’t recount for her the sounds coming from his mouth in that moment. His urgent struggle to breathe. Unforgettable sounds that escalated to a primal wailing that ripped through his body and ricocheted through mine.

What use to her would it be to paint a vivid picture of that night, flashing in my mind like a horror movie every time I closed my eyes?

I see it all in colours and let me tell ya, it ain’t no rainbow.

There’s the white of my tensed knuckles gripping onto her Daddy’s shirt as three of us tried to keep his convulsing body on its side.

The hideous transition of grey to blue as his face changed hue. That was the moment when his heart stopped. For one minute, then more. Seven all told.

To me, the time stretched into infinity. Seconds expanded into excruciating intervals of pain. I thought he was lost to me forever.

After that there was no colour at all, only panic and movement. Doctors and nurses running into the car park from the hospital corridor with life-saving instruments. I was dragged away.

It turns out it wasn’t our sweet man’s time to die that night. Maybe Lady Luck was smiling down on us. I’m part-Irish, vaguely Protestant, wholly atheist, but I thanked the Gods with all my heart.

Damn it, they owed me one.

Next morning, it was my own mother’s job to pass on the news with careful hands to her grand-daughter. I can think of no-one better for such an important task.

She said: “Honey, your Dad had a sore heart and he went to the hospital feeling sick but he’s much better now. He’ll be home in five days.”

Amelia paused over her breakfast, eyes suddenly shining with almost-tears but her internal dam walls held them in.

My brilliant Mum recognises that explaining time frames to our girl helps her to feel safe. Together they counted out the days on their fingers, reaching Monday as the likely date of her Daddy’s return.

Amelia nodded and her eyes cleared; she could cope with that.

The note from school the next day read: “Amelia seemed a little sad today.”

I watched her out of the corner of my eye, looking for signs of melancholy or worry. As usual, Amelia’s deepest emotions remained just that, buried in the subterranean depths of her enigmatic heart and mind.

But I know that just because she’s not asking questions doesn’t mean she’s not thinking intensely about the world around her.

So in a light voice, I asked her straight out: “Baby, are you feeling a bit sad that your Dad is in the hospital?”

Her reply was prompt and awe-inspiring: “No. I’m strong.” She followed this with a typical Popeye flex of her arms.

Conversation over.

No. I’m strong. You could have picked me up from the floor.

Her response signalled two things to me. One was that she really didn’t want to talk about what was happening. That her way of dealing with the sudden change in our lives was to soldier on as though all was well. I could only respect that.

On a more literal level, Amelia really was saying to me, “It’s okay Mum, I’m tough. I can handle it.”

This wasn’t some statement she’d heard somewhere and was parroting back to me without meaning.

At six, sometimes Amelia’s behaviour still resembles that of a three-year-old. But here she understood that strength is something intangible you call upon in the darkest moments to make it through.

I saw this understanding take further shape when she saw her Dad in the hospital for the first time. She didn’t speak but she held him in one of the gentlest, longest hugs of her life. His silent tears poured into her hair and she held him longer still.

So, I didn’t need to tell her everything, did I? There was so much she already knew. Talking was hard enough for me anyway. Eating and sleeping almost impossible.

Amelia’s very real strength rose up to bolster my own. At night, I held her body close to mine and she placed a hand tenderly on my cheek. She kissed me there with wet lips but I didn’t wipe the moisture away. It made me feel alive.

Never say Neverland

The boy who wouldn't grow up

The boy who wouldn’t grow up

QUESTIONS, always with the questions.

“What’s your name?” Amelia asked me for approximately the hundredth time that week.

I am forever* patient. “My name’s Melinda. What’s your name?” It’s always quid pro quo with us.

A shy smile. Amelia answers, “I’m Peter Pan … and I can fly!” She took off then, milky-white arms aloft, reaching for the sky. Well, the ceiling, anyway.

My six-year-old daughter is Barrie’s boy who wouldn’t grow up. And she can fly.

The meaning of this fantastical claim was not lost on me. I have carried heavy facts about Amelia around in my head for years, details that told me she was very far from flying.

From walking, from talking. Hearing. Learning. Connecting. Growing apace with her peers.

My Peter Pan was tethered to the tarmac by words like “abnormality of development”, “lower border of the normal range”, “limited”, “requiring substantial support”.

Those were the diagnostic words. Deaf and autistic was the poster copy.

It’s one thing to be told harsh things about your child’s development but it is quite another to absorb them. To believe them as the natural order of things.

Her cognitive test scores painted a bleak picture of her abilities when she was four. But who’s to say that was the whole story of who she would turn out to be?

Not me. I just held my breath and waited to see what would really happen.

Time has passed and Amelia’s progress has stunned us and all the people who love her and work to support her.

She can read. Read! By herself in her room, she reads out loud and asks for help with the tricky words and then goes on. “I can do by myself.” Yes, you can.

She can learn, about numbers and rules and abstract things thought beyond her grasp. She is interested in the patterns that shape her world and how things work.

She can sign and speak and tell us a little about her fears and feelings. She can express herself in two languages and through ribald jokes that make me laugh like a drain.

Amelia in full flight

Amelia in full flight

She can listen and hear enough with her hearing aids to learn, to recognise our voices, to feel present in the world. She asks me to sing and holds her ear close to my mouth. Be still my heart.

She can run and jump and do forward somersaults in mid-air and suspend herself in a handstand on the front wall of our house. She is strong and confident in her body, as she proudly tells me with flexed arms, “Me muscles!”

She can, in a quiet voice, ask other children to play with her in the park. Take their hand and show them how to climb. Watch out for the little ones on the slide. Join in.

She introduces herself thus: “My name is Amelia and I wear hearing aids. I’m deaf.” Just like that.

See, she really can fly.

I love her unbridled passion for Peter Pan and all of the whimsy and magic that his story entails. He is brave and so is she, so the velvet-green cap with the feather truly fits.

But part of me wants to tell her that she is better than him, that fictional boy who fears growing old and who is trapped in the arrested development of the endlessly immature.

Peter Pan lives in Neverland, which is a wonderful place for feisty fairies called Tinkerbell and curious children to dream large, but it has its limits, as Barrie himself discovered. Never say Neverland, I reckon.

My Amelia lives in a more wondrous place than that, unimagined when she was two and four and dark limits blocked the sky from view.

Last week she said to me, “Mum, I can’t wait to be older.” Because life is exciting. Growth and development are a cause for happiness and celebration.

For now she is content to play at being Peter Pan, flying high around the lounge room and leaping from the couch launching pad to the stars.

But in Amelia’s ever-expanding world, growing up is the real aim. As time goes on, my quiet faith in this girl grows louder, more insistent. I don’t believe in fairy tales anymore, but I do believe in her.

As Barrie wrote so beautifully, “The moment you doubt whether you can fly, you cease for ever to be able to do it.”

* This statement is caffeine and sleep dependant

On finding solace in the dark

indexPEOPLE OFTEN ask me what autism is, or what it means to have a young child who is on the spectrum.

It’s not an easy thing to articulate. All I can reach for are the behaviours that seem to spring from that enigmatic well.

If you asked me that question today, I would tell you that parenting a child like my daughter Amelia is still much like being on a rollercoaster.

The carriage holding your family might hover on an up-swing for months and you feel that pleasurable excitement of progress in the pit of your stomach.

You yell into the oncoming wind: ‘We’re making it, we’re really getting somewhere! Upwards and onwards!”

But today, like every day for the past six weeks or so, we’re not getting very far. We’re deep at the bottom of a trough and the wheels aren’t moving anymore.

I think they disintegrated on the way down some invisible ramp and now we’re sliding backwards.

In this trough we are locked in yet another lengthy battle of wills with our daughter. It’s the Hundred Years War all over again. We might have taken Agincourt but that doesn’t mean jack in the long run.

Every day is filled with screaming fits, physical outbursts, nocturnal wanderings and ever more screaming.

We have been here so many times before, but my god it never gets easier. We’re nearly seven years in and some days I wonder how much longer I can hold on.

Last night around dinner time when the screaming began for the fourth time, I walked silently into my room and crawled onto my bed in the dark to escape my own child. In that dark I felt no comfort but at least the space was quiet and it was mine.

The dark is the right place for me in those moments. I can’t see myself (or her) anymore, I can only hear the sound of my breathing.

The dark is heavy and that is what I want. To allow the blackest thoughts in my head to wash over me as I lie there. There’s no use fighting them, pounding as they are to get out. Might as well set them free.

Lying on the bed I curl into a ball and weep. I cry because I am so tired I don’t really know how it is that I can function in the day. And because I feel a momentary yet powerful sense of defeat.

In the shadows I know only that I am losing this battle – not the battle to beat Amelia at this relentless ‘game’. Nobody’s playing around here. 

No, I am failing to help her to handle the frustrations that she cannot yet manage on her own.

I hear taunting voices in that dark room too.

They say: “There’s nothing wrong with Amelia. She’s only like this because you are a bad parent.” (Yes, in my head I italicise for emphasis.)

To those voices I say: “Come into the dark with me and see how long you’d last. You know nothing, cruel, hateful voices. Get away from me and never come back.”

Then suddenly into the dark comes my real, live daughter, the one I’m taking refuge from. She puts a hand onto my back and holds it there. I reach over my shoulder to touch her, to tell her she is welcome there with me.

Amelia lies down next to me and curls her arm around my neck. The dark brings no true comfort, but her affection does. She kisses my cheek softly and presses herself into me. The darkness shifts a little and loses something of its heaviness.

I’m no superhuman and I’m not a machine either. The more confronting behaviours that define Amelia’s autism naturally penetrate beyond the surface of my skin.

My resilience is not bottomless. On such little sleep over so many weeks I can feel myself start to fray at the edges. I forget where I’m supposed to be going. I lose my way.

In this state it’s so hard to know what to do to. Sometimes I want to run so far away that no-one will ever find me. But I only ever get as far as that room, where only the dark will do.

And it is here, where all is finally, blessedly quiet that Amelia reaches out and brings me safely back to myself. With empathy and love we hold each other in the dark and start again, as we must, every time.

Carrying the mother load

Kicking back and growing up

THIS WEEK in my house we will celebrate in our own small, quiet way that modern event known as Mother’s Day.

For us it still feels like a new tradition and this year will mark the sixth time I will be lucky enough to be in the box seat for a hand-made card from my daughter Amelia, followed by burnt toast served on a large hard-back book (Bowie: Album by Album) in bed.

Oh, the luxury.

I get that it’s a super commercialised ‘holiday’ and that the marketing of Mum-gifts is so narrow in its view that it can only imagine one uber-domesticated, goddessy-type mother.

The reality of my childhood is that if you were going to buy power tools for anyone it most likely would have been my Mum (sorry, Dad).

I can’t get overly energised about public perspectives on what is actually a very private role. It belongs to no-one except the woman who is doing the mothering and the child or children who share that relationship with her.

Mother’s Day is about business; but my sense of motherhood is nobody’s ‘business’ but mine.

It’s such a complex thing to me, being a mother. It has meant so many different things over time, I can hardly begin to unthread one from another. It’s a tangle of feelings, thoughts and experiences. And so many ups and downs.

Even before Amelia was born, I felt strangely detached from the idea of motherhood. Her conception occurred in a medical laboratory; her little egg was extracted from my body while I was unconscious, fertilised in a test tube. My husband and I didn’t even need to be in the same room for that.

I was technically present, but I felt far, far away from myself, like waving to a familiar shape on the horizon who doesn’t see you.

Pregnancy helped to repair that detached part of me, at least back then. It fused splintered bits of my self back onto the bone. Whatever interventions I endured before and after Amelia’s birth, carrying her inside me drew me closer to her, to the nurturing experience of almost-motherhood.

My body was not just some broken machine that required drugs and procedures to work like it was meant to. It was life-giving, sustaining another person’s growth. Every kick, lurch, forward tumble (what the hell was I growing in there, an acrobat?) inside me was a sign that my body was finally doing its job.

I could pause my lifelong hatred of it and welcome its changes for the first time.

My take on childbirth is mostly a pragmatic one. It’s a necessary means to an end. Of course there were more medical interventions, more body-numbing drugs, incisions. I could not escape them, but they did not sever me from the powerful emotions I felt upon seeing Amelia for the first time.

And she was perfect. She really was. My January girl, Amelia Isobel. Named in part for a forgotten woman we wanted to remember through the gift of our daughter.

The distance we had travelled to get there, to reach each other, was long and hard. Yet we had made it and contentment washed over me like warm water moving downstream.

It turned out that the perfection we swiftly projected onto Amelia was illusory. Nobody looks at their baby and sees anything other than all that is right and true.

But there were shadows all around. Third parties. Autism was like another child born alongside Amelia, standing between us. It held out its small hands and shouted, “Stay away from me!” It kicked and railed and screamed and it never let up.

Deafness too. Before we knew it was there, deafness was another character vying for attention in an already confined family space. The cost of not knowing that its presence had stood in Amelia’s way for two years, causing us to wonder why our child felt so remote, remains with me.

That grief grows smaller but it never leaves.

Amelia’s unique set of challenges have tested to the hilt the ways I see myself as a mother. What it means to love a child who did not hear my voice after she was born and who could not really bear for me to hold her close. Who sometimes seemed to reject my very existence in relation to her.

How can I be a mother if I can’t comfort my own child? Show her my love through the warmth of my body, the song in my voice?

The years have been challenging and arduous. I will not deny that for a number of those years I have felt like the living embodiment of The Wreck of the Hesperus; a walking tale of woe.

I have been a mother in name, it is true, and I bear the massive responsibility of guiding a very vulnerable person through the mists, onto dry land. But it hasn’t really penetrated beneath my skin, my sense of really being Amelia’s mother.

In our darkest years, mothering her meant learning and then teaching her how to sign before she could talk. I worked hard to give her language and access to the world, painstakingly, word by word.

I watched her tear herself and the house apart in the midst of yet another distressing meltdown. I tried everything and achieved little save hours and hours of sobbing. For us both.

We couldn’t go on outings or share in the most basic things like a walk together for the longest time. I would watch ‘normal’ mothers on the street from my car, talking and chatting to their little ones. So effortless, it seemed. I thought my heart might break in two.

For me motherhood exists in those incidental spaces where small exchanges of love seem possible. Long, soft cuddles on the couch, whispered secrets at the park, tears wiped away with the palm of my hand. All are welcome.

They’re spontaneous, shared events of connection and they combine to build into a bigger picture of mother-daughter bonding.

It is simply a fact of Amelia’s early life and the severity of her challenges then that she couldn’t bond with me in traditional ways. I understand now that she did love me and need me, just not in the ways I had expected.

She couldn’t show me and I could not see it or feel it, but her love was there, as was mine. It just took us some time to see each other properly.

In my own narrow view of motherhood I had set us both up for failure. I feel very sorry for the pain I inflicted on myself then and the distance that created between she and I. I held her in my mind as though on a string, floating away from me, when I should have tethered her closer still.

Because now she is six and though I feel like I have waited for an eternity, Amelia is really ready to love me, in her own, quirky way. I’m doubling down and keeping her all for myself.

Daily, hourly, she throws herself with gusto into my arms and says earnestly, “I love you Mummy, you’re my best friend in the whole wide world”. I am now a mother who feels ten feet tall. A world beater; life conqueror.

I am learning to trust in these moments, rather than unpack them endlessly or worry that my girl is faking it just for me.

You know he's wishing that was a fried pork dumpling

You know he’s wishing that was a fried pork dumpling

On Sunday we ventured out for lunch in a rare attempt at family ‘normality’ and it was one of our most wonderful days so far. Top five, I reckon. We ate dumplings like Friar Tuck would have if he’d been lucky enough to have a yum cha local to him in Sherwood Forest.

We ate together, we laughed. Amelia sat happily and I actually relaxed. We left and went in search of ice-cream; there was no hurry, we could take our sweet time. Amelia sat patiently on a stool next to me while we waited for her Dad to purchase a messy chocolate concoction in a cup.

And then we walked to the lights on the corner to cross to our car. I stopped and leaned against the light pole. In front of me, my dear little person leaned her body back into mine.

It was a subtle movement, but the pressure of Amelia resting on me, the warmth, was a heady mixture. I took a risk then. I reached up my right hand to stroke her beautiful, blonde hair.

She let me, so I grew bolder. I ran my hands through it, letting the strands fall down her back like it was the most glorious silk in the world. As a mother I’ve only ever wanted to be able to show such tenderness to my child.

She didn’t pull away and I didn’t breathe.

The extravagance of being able to have this contact without rebuke was everything to me in that moment. I looked up at the people in cars idling on the street and thought “I wonder if they look at me and see a mother?” Because that’s how I felt right then. Like a real mother.

It’s a new feeling, like a shiny coin I’m turning over and over in my hand, marvelling at the shapes, the grooves I can see in the light. I know I will feel it again and more often and that thought is more exciting than a thousand Christmases at once.

Yesterday, Amelia jumped off the bus from school clutching a plastic bag behind her back. Ah, the Mother’s Day stall at school. She’d spent the $5 I gave her that morning and was clearly pumped about her acquisition.

She ran swiftly ahead of me to hide my present under her bed. Last year she would have just shown me, but she’s learning how to harbour secrets and cherish surprises.

And I don’t care if that bag has a tea cosy in it, a weird tissue box holder, or a garishly decorated mug to add to the 400 others in our cupboard.

It’s Mother’s Day on Sunday and I want my card, my burnt toast and whatever special prize my beloved daughter thought to choose just for me, her mother and her best friend in the whole wide world.