Time to fly

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 kite runner

SHE ONLY let go of his hand for a moment, all the better to chase the colourful kite sailing above their heads. Her arms are raised, as though she can touch the clouds or pull the kite to her with an invisible string clasped in her hands.

The cool breeze brushes against her bare forearms, her face tilted skywards. There’s nothing so perfect as a March day when the heavens are smiling so wide you can almost see their teeth.

The kite is tethered but it is free and so is she. Tethered to her father standing close behind but out of view; free as the kite soaring into the blue.

She follows its path along the clouds, running to catch up but it is forever out of reach. No matter, the joy is in the chasing not the catching.

They had only planned on the park and slides and maybe swings, not kites. Nothing so special as that. They were a surprise bonus.

As was the wonder their simple appearance brought out in her. The thrill in her voice when she came home to tell me that, “We saw kites, Mum! It was a kite festival.” Festival. It’s a new word for her but her voice is clear and true. I understand perfectly.

And the happiness on her Dad’s face, “She held my hand for ages. She sat and painted her face with the other children. She made a little book inscribed with her name. And danced. We both danced.”

They both danced. The kite was reeled in at festival’s end but the magic went on in their heads. All night long.

 

 

The greatest show on earth

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…

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.

Soil searching

Up the garden path, with rose petals

I have something shocking to report.

Something disturbing has happened to me in the wash-up of recent traumatic events.

I never thought this would happen to me as we put the pieces of our little family back together and started to breathe again.

Okay, here goes. I have become … an avid gardener. You heard.

I’m the newest green thumb on the suburban block. A woman with soil permanently wedged beneath her previously manicured fingernails and dirt marks smudged proudly on a rouged cheek.

Marks from the earth are my new war paint. I am obsessed and there is no stopping me now I have started.

There is still no cessation of the intense energy (mania) that drives me from morning to night, but you can’t have everything. And, after all, how much pruning could I achieve without such boundless energy?

The garden has never looked so luscious and cared for in the ten years I have nurtured and neglected it in equal measure.

It started with small steps out in the backyard. My husband was in hospital and after my daughter Amelia went to sleep at night, I’d find myself sitting on the cool ground outside, tearing out weeds and overgrown tendrils of grass.

My hands needed to work so that my rattled mind could stop churning, even as the daylight faded and I could no longer see the garage for the trees. So work is what I did, for days and nights on end.

My little partner in garden crime

I rejected gloves outright, preferring to connect with the often harsh textures of the garden. I endured deep cuts, broken nails, rose thorn splinters, and the pitter-patter of arachnid legs down my arm (eek).

The abrasions on my body at the end of the day satisfied me somehow. They were a positive sign of the exertions that were holding me together.

From weeds, I turned to the wild native shrubs that had suffered from months of inattention. They were locked in a permanently coiled dance, branch arm in tortured arm, plant figures robbed of distinct identities.

I took up my gardening shears and hacked and slashed at these shapeless masses with violent zeal. Sweat ran down my back from the effort, from the sun beating down on my pale skin. But I didn’t feel anything. I was too busy to care.

Inside the frenzy of my activity there was always method, always control. A sense of creating something new with my bare hands and sharp steel. Of taming and cultivating. Surviving.

I was an amateur gardener but I felt like an artist. I stood back to survey the landscape; feral forms had been transformed into shapely bushes with breathing space to call their own.

One willowy tree, previously choked by an untamed knot of green mess, was now free to stand tall and swing high in the breeze.

At night I would stand at the back window and press my hands to the glass, looking out at the garden. My garden. I was changing it for the better; my influence was everywhere.

In the newly planted pots of blooming flowers in pink and blue. Or the water trickling down the path post an evening soaking session for my thirsty friends.

In the dark hours of wakefulness over the next few weeks I would imagine new garden beds. And then in the morning I would set about bringing them to life.

Hanging terrariums dotted with shells collected from some forgotten beach. Plans to convert an arid corner of our property into a secret succulent garden. The movement created by long-limbed plants covered in bright blooms, tucked beneath our Crepe Myrtle tree.

Once the garden had taken root in my imagination, I couldn’t let it go.

Amelia joined me on my intense botanical mission. She lovingly tended to her own little patch of green things; her strawberry plant, the flowers, the tomatoes, mint, kale and parsley (she is a child of Melbourne’s hip northern suburbs after all).

Blooming for the first time

And all of this watched over by a cheeky little garden gnome and a solemn statue of a girl who used to care for my Nan’s own garden before she died.

Our afternoons of toil would usually end the same way – with us covered in mud and Amelia stripping off her clothes to play under the delicious cold spray from the hose.

We grew things, re-shaped them and made them come alive again. One native shrub received some much-needed pruning and water treatment. Weeks later I spotted glorious, bright pink flowers appear on its spiky branches.

In all the years since it was planted, I have never seen those flowers before. It made me so happy to see them, such a generous response to the love I had finally given it.

And though our world isn’t spinning so fast anymore, life is returning to something approaching normal, I feel forever changed by the experience.

I need to be in the garden now, not just to distract myself from pain or worry. It’s a part of me; I’ve poured my soul into it and so we are bound together.

At night, I am uneasy if I haven’t at least dug my hands briefly into the soil or splashed some water over the beds, tucking my plants in for the night.

I step out onto the porch and take my time to look out across the garden towards our worn-out picket fence.

I soak up the warm night air and gaze happily at recent nursery additions now flourishing, and frown over a young plant failing to thrive.

Tomorrow I will endeavour to restore it to good health and hope to find some peace for myself. Just for a little while.

For VR who shares my love of gardening and is a kindred spirit in more ways than one.

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.

Remembrance of things past

Wonderful childhood days (Malaya, 1956; Dad at far left, his father at centre)

A FEW months ago I was in the car with my parents when my Dad started telling me a story from his adolescence that I hadn’t heard before.

I thought I knew all of his stories, but that day I discovered there are some tales not so easily told, even some 50 years after they happened.

Even my Mum, who’s known him her whole life, had only learned about it the year before.

If you flew a helicopter over the landscape of my Dad’s teenage years, it would look a bit like a war zone in the aftermath of a most terrible battle.

Smoke rising from shattered structures once recognisable as buildings. Emptiness. Despair.

He grew up in a corner terrace house facing Windy Hill in Essendon, with his loving grandparents, parents and two siblings. By the time he was 14 years old, nearly everybody was gone. Dead, dying, disappeared, lost.

The disintegration of his family unit was startlingly rapid, most of it vanishing quickly in the space of only two years.

By the summer of 1965, my Dad and his younger brother were alone in that big terrace house once filled with the sounds of familiar voices and adult footsteps on the stairs.

Dad surrounded by his grandparents and father (1951)

Within a few weeks they would be turned out of this home, but for a short time it was still theirs. An anchor to a simple family life already past, never to return.

Around this time, my Dad remembers a family friend would visit most days, drink beer and chat to him. He was an Army man like my grandfather and Dad began to regard this man as a father figure in the absence of all others who might fit the bill.

Dad told me that his family had a dog then who had become pregnant and had given birth to three tiny pups.

My Dad has a tough exterior but he’s actually a massive softy when it comes to animals. I’ve seen him hand-feeding magpies and worrying over the welfare of their young.

He watched over his little canine family too, taking special care of them. I can see him now, his sweet face hovering over their sleeping spot out the back of the house. He would have treasured them and wanted to make sure they were alright.

But they weren’t going to be alright. Not in this story, pulled from the wreckage of his teenage years. I couldn’t see his face as he told it but there was something in the tone of his voice that made me sit up straight.

I leaned in despite myself. I didn’t want to hear anymore but it wasn’t for me to stop him in the telling.

The family friend was visiting late one night. He went out to use the outdoor loo and came back with a story of his own.

He’d killed the pups, he told my Dad roughly. With the back of an axe. They had distemper, he said.

I’d known something bad was coming but hearing the worst thing is different to merely imagining it. Hearing makes it real and you can’t wash it away no matter how hard you might wish it.

My beautiful grandparents (1949, the year they were married)

My Dad can still remember reeling in shock and horror as he took in this news. That this man who he’d begun to trust and rely on should commit such an act of senseless violence was shattering.

He didn’t think that his pups were sick at all. Killing them was about something else. Something darker inside the man’s mind.

Looking back, Dad can see that during this period he was trying in small ways to survive the things that were happening to him. Going to school. Playing footy and cricket. Tending to the newborn animals.

But stripped of the protective forces of his family, he was as vulnerable to the impact of an axe-blow as those poor, defenseless pups. Who could he tell anyway? There was no one left to listen.

And we can’t ask the man why he did it, no matter how often my Dad has tried to understand; the dead take their secrets to the grave with them. Let them stay there.

Not for the first time, I wanted to reach across time and rescue that lonely, young boy. Take all of his pain away. I can’t fathom it, what his life must have been like then.

I wish that I’d been there to protect him, to help him somehow. But the past is the past and Dad knows and accepts that better than anyone.

Dad in 1961

I’ve asked him so many times why he isn’t more sad or angry about this time and he shrugs enigmatically as though the movement could cast off all the hurt he experienced as a boy.

I project my own pain for the boy he was onto the man he is today. But it’s not my story to shape, I’m just passing it on with his blessing.

My Dad is passionate about family history now, collecting and cataloguing hundreds of wonderful ‘lost’ images for all the family to see. They’re a joy to him and a gift to us, so we can remember his people as they were and connect with his life before and after the reckoning of 1963-65.

It’s a more recent project for him, starting only in the last few years. I think he uses the pictures to reconstruct the life he once had and make it whole again.

The happy times, when all of the people he loved were still together and he could just be a boy who loved aeroplanes and playing sport and had his beautiful family wrapped around him, holding him tight.

* For my brave, wonderful Dad, thank you for trusting me to write about your life. I love you.

Desperately seeking ‘s’

HERE are Amelia and P, her wonderful speech pathologist, searching for that elusive ‘s’ sound. The mechanics of just one little sound like an ‘s’ can take years for a deaf child like Amelia to learn and master. It’s too soft, too secretive, for her ears to pick up clearly so she needs a lot of support to work it out.

I sit and watch while they practice making repetitive, sibilant, snake sounds. P elongates the consonant, drawing it out in a long, slow hiss at the start or end of a word. Or just by itself. Everything has to be emphasised so that Amelia can identify the sound and start to join the dots on how our mouth, breath and tongue collaborate to form a simple ‘s’.

So they sit together on a Tuesday morning and they hiss, and laugh and hold each others hands to feel the breath, the noise, made by each other’s mouths.They are gorgeous to witness, because there’s so much affection sitting alongside the toil.

Amelia’s ‘s’ is thinner, more tentative than P’s. She’s still not sure of herself and when P adds in tricky little vowel combinations, sometimes the ‘s’ disappears, falling away for a moment. But they’ll pick it up again next Tuesday when they meet.

And Amelia will retain a little bit more each time until one day, maybe this year, Amelia will unlock the secret of that slippery little ‘s’.

 

How do I love thee? Let me count the ways

Taking a spin with a true dancing queen

THIS week, in the midst of Christmas and all of the merry freneticism that its celebration brings, my family lost someone very special.

To me, she was my beautiful Nan. To my Mum, she was an adored and most cherished mother. To my five-year-old daughter Amelia, she was Grandma, with the soft grey hair who loved her very much.

To all, she was the whip-smart woman with the piercing eyes and the gutsy spirit that sustained her until her final moments. Her last breath on this earth.

I already find myself desperately searching my memory for thoughts of her; certain conversations, or just the sound of her voice. Oh, that voice with its unparalleled beauty in speech and in song.

What a gift it was and now I will never hear it again beyond what my mind can recall.

And her lion heart, which she gave to me so many times over the years, always when I needed it most.

Like when Amelia’s deafness was diagnosed and I sat across from her at the Rosebud RSL, tears streaming down my face and I said to her, “Nan, how could I not have known something was wrong?”

She fixed me with those intelligent eyes, filled to the brim with understanding, and simply said, “But you did know, my darling, you did.” As usual, she was right.

My Amelia in safe hands

Nan always understood me and more importantly, she totally ‘got’ my sweet but headstrong daughter. She embraced Amelia’s differences, even learning to sign some key words to her in Auslan.

Among her last words to me was a specific message of love for her great-granddaughter. She could hardly speak by then – that lovely voice now ravaged by her illness – but she wanted me to know that she felt a special connection with Amelia: “We clicked”.

Where else should Amelia’s defiant approach to the world come from, but the pioneering stock that has produced some of the toughest, most wonderful people ever born?

They’re family myths, I know, but we hold tight to their significance in our lives. They make us feel part of something bigger than ourselves. We are not alone if we are together.

I shared so many passions with my Nan. We both loved to read and to swim in the summertime. Those summers spent on the Rye foreshore were some of the happiest times of my life. Kicking back on a lilo, burying each other in the sand, and laughing. Always laughing.

The happiest of times at Rye with our Nan

I know that memories fade, and it makes me panic to think that I won’t be able to remember as easily or clearly the sounds and sights of these times with her.

We have photographs to remind us, but how will I conjure up the touch of my Nan’s hand in mine or the melodic sound of her voice in my ear?

Who else will tell me with such direct and brutal honesty when I’m looking too tired or sick or thin (or not) or if I’m cutting the vegies the ‘wrong’ way? Who will fix me with eyes of steel and not let me lie and say that I’m alright when I’m not? “Come on, Lindy Lou, I know you”.

She did know me, she really, truly did. And I knew her like the skin on my own body or the thoughts in my head that remain unsaid.

Her name was Joyce but people called her Joy. And she was an embodiment of that name: a joy to know, to hold close and count amongst our own.

Be at peace now, precious woman. It’s time to rest.

Careful she might (not) hear you

I’M NOT sure precisely when I started worrying about the social impact of my daughter Amelia’s deafness. Maybe it was the day I read too much online about how isolating, confusing and downright exhausting social experiences can be for deaf kids, always up against it in the hearing world.

Daunting words in bold-face leapt out at me from the computer screen. Sharp-edged ones like, depression. Anxiety. Paranoia. And anger. That one always seemed to be in italics for maximum impact.

It’s not a doom-sayer’s checklist – ‘nasty things coming your way when you’re raising a deaf child’ – but it is a set of emotional risk factors that can’t be taken lightly.

My aim as a parent is to hopefully reduce their power to hurt my daughter on her path between two contrasting worlds, deaf and hearing.

Amelia is not quite six years old and we have only known about her deafness for a tick under four years. It’s not a long time in the grand scheme of things. But already I see just how easy it is for her as a deaf child to be left out or excluded by virtue of her difference to other people.

Let’s take birthday parties as a classic example. Oh birthday parties, how I hate thee with a passion. It’s unavoidable, but kid’s parties are the worst kind of place for a deaf child to feel a part of the natural order of things.

Because they’re too loud, too chaotic, too MAD for Amelia to make sense of what is going on around her. Sure, she wears hearing aids but they are next to useless in the face of such an intense racket. Those little devices can’t sift the wheat sounds from the cacophonous chaff and so she is mostly lost.

I watch her making her way with excited bewilderment around these parties and I feel like throwing a huge, warm blanket over her. Underneath its soft layers, background noise would be reduced to a gentle hum that would not compete with voices speaking clearly in merry conversation.

In either context Amelia is alone. ‘Alone’ in the noisy crowd, or by herself beneath the blanket I throw over her every day when we come home and I can set things up exactly as she needs them to be.

It is because of this potential for loneliness that I love being able to send her to a school for deaf children. When I visit Amelia there and see her with her classroom comrades, it’s sometimes hard to see where she starts and they finish.

The joy of school etched on her face.

These six classmates have been together for almost two years now and they are incredibly close. Whether they speak or sign to each other there is something almost organic about how they interact.

It’s born of the time they’ve spent bonding as friends but it is also the result of their shared identities as bilingual deaf kids. Communication between these children operates on a plane of mutual instinct and understanding; touching or tapping to gain attention, waving to be seen or heard, using gesture to add meaning: all form the basis of a code that marks them out as members of a club, a culture.

Within this rarefied environment, Amelia and the knowledge required to be with her and make her feel like an insider are known to everyone. I never need to worry about a scary thing like social isolation.

Seeing how crucial communication is to Amelia and her sense of belonging, it is all the more important for us, her hearing family, to be diligent about always involving her in social activities and conversations.

When we have friends over to visit, she becomes highly agitated and manic when there is a lot of conversation happening across her, between adults engaged with each other rather than with her.

Amelia yells at us over and over again to explain, “What are you talking about? What are you talking about?!” She throws her body into the mix too, placing herself in our eye line so we don’t ever forget she’s there waiting to be included.

Of course she needs to learn when to wait her turn (good luck) and it is less than socially optimal for us to have to keep stopping and explaining each story to her, but it is her right to be factored into the cut-and-thrust of social chatter.

It is much harder for Amelia to find her way in larger social situations where competing sounds blend into a baffling wall of confusing sounds and she sort of disappears under the radar, unable to get her bearings without a hearing compass to guide her.

This is where our greatest challenge lies, in reminding other people to take a minute to stop and talk to her, lean down close to her face so she can see their lips when they are speaking, use their hands to make the meaning of their words clearer. To see her and invite her in.

In reality, it doesn’t take much to make a child like Amelia feel involved AND accepted. I see this every time we spend time with our closest friends, GH and NB and their boys. It’s so uncomplicated, the way they ask Amelia how to sign certain words, to share her second language with them.

I watch Amelia’s eyes light up with pleasure as she shows them how to sign ‘turtle’ or ‘hippo’ in Auslan. They sign the words back to her and, hey presto, she’s in their world and they are in hers.

We recently went on holiday together and stayed in the same cottage. At night time as we were getting our kids ready for bed, there was always some story-time happening in the lounge room.

Sign of the times: Amelia and Jeremy take their friendship to the next level.

Unprompted on the first night, Amelia grabbed a book and sat next to our friends’ youngest boy. She opened the first page and started telling him the story completely in Auslan, with her voice ‘switched off’. I’ve never seen her do that with anyone outside of her family or deaf friends before.

And he loved it, watching her hands describe the flow of river water or the fire expelled by a scary dragon. Amelia repeated this routine each night, and I could tell she felt proud to be like a big sister to her sweet little friend, able to teach him something new. It is lonely to be an only child too.

Sometimes I think it’s children who know best how to cut through all of this stuff and find some valuable common ground.

Like the other day when Amelia was with her Dad in the park and she ran over to ‘talk’ to some older boys, aged maybe nine or ten.

Her speech wasn’t really up to an in-depth gossip session but she had a mighty crack anyway. In these situations she tends to make a lot of noise, such as loud bird-screeching sounds and flaps her arms around, in her often-strange attempt to say ‘hi’ and make friends.

One boy saw Amelia’s hearing aids and asked her Dad if she was deaf, which he confirmed. “Oh, we thought she was disabled or something but then we saw her hearing aids”.

The boys then welcomed Amelia into their group and hung out with her. They had zero anxiety about approaching her in the ‘wrong’ way. They got the hard questions out of the way early and then all there was left to do was play.

And it wasn’t that they were tolerating her presence, the boys actively shared their games and conversations with Amelia. They let her hold their hands and there was mutual enjoyment of the time spent together in a small park in the suburbs.

I know that this was a special event because of the way my husband told it to me. He spoke about that main boy reverentially, because for about fifteen minutes he took our daughter into his world and any present worries about her just melted away.

Her isolation, and my husband’s, were delayed for an afternoon, halted by the friendliness of those boys and their easy acceptance of Amelia.

And so was mine. Social isolation isn’t just a huge risk factor for deaf children, rather it applies to their parents too. Because for every child or adult who ‘gets it’ there are so many others who don’t and that is an alienating fact indeed.

Thankfully at the moment, Amelia isn’t really cognisant of the people who accidentally ignore her, nor does she seem to feel the exclusionary effects of situations in which she is a natural outsider. The big job for us as she grows is to try and minimise the impact of this kind of isolation on her generous little heart.

All we can hope for is that there are enough loving family members, cool boys in the park and sweet little friends who enjoy their story time in Auslan to protect her from the feelings of loneliness when they come. And try though we might to stop them, they will come.

Ogres are like onions

Don’t mention parfait.

IN ONE of my favourite scenes in Shrek, the titular Ogre and his Donkey friend are walking and talking about the vagaries of life. Well, at least Shrek is trying to.

He explains to Donkey, “For your information, there’s a lot more to Ogres than people think…Ogres are like onions”. Not because, as his little hooved compatriot points out, they stink, or make you cry. It’s because they have LAYERS.

Shrek is trying to say that he is more than the sum of his parts, more than the brute strength suggested by his enormous, green frame. He is a complex being, with, well, layers.

Donkey’s jive-talking wisecrack, “You know not everybody like onions,” is followed by a hilarious riff on the deliciousness of parfait more suited to Mary Berry’s love of perfect cake “lairs” than an existential crisis.

I can totally relate to Shrek’s onion-based reflections. When we found out that our daughter Amelia, who was born deaf, was also on the autistic spectrum with some serious developmental delays to boot, my mind reached out for a suitable analogy and came upon the humble onion.

I can remember saying in my flippant-but-painfully-serious manner to our pediatrician, “How many layers does this onion have?” We laughed but neither one of us was taking the news in our stride.

By drawing my own onion parallel with our life, I don’t mean that I view my beautiful daughter’s struggles as something to be bitter about, though I have cried more tears for her than the most gruelling meal-time chopping session could produce.

I’m trying to find a way to explain how it feels to start out as a family where everything feels certain, solid and whole, for at least a year, and then suddenly important layers start flaking off, one after another, revealing big problems in the rawness underneath.

When I think about the many phases of our life-onion in the nearly six years since Amelia was born, it’s hard to believe the number of challenges we’ve been confronted with.

On one level, it can make you feel dreadfully pessimistic and wary of the next bad thing waiting just around the corner. Once the layers start to crumble, it’s difficult not to see trouble in every cloud, every rainstorm, or every Bureau of Meteorology forecast annoyingly recited to me by my weather-nerd husband.

What could be more important than this?

But the funny thing about going through massive life upheavals, one after another in a short period of time, is that you exhaust a lot of the energy that would normally be expended worrying about pointless things.

By the time you’re standing at the centre of that unstable onion, you have little need to be worrying about the next career move, big promotion, or shiny new car. Your perspective undergoes a radical shift and it will never be the same again. For that, I am extremely thankful.

In a weird twist of fate many years ago now, I was made redundant from what I thought at the time was an important job, the best job I’d ever had. In the blink of an eye it was all gone, the company car, the generous salary, the status symbols of a career I had built over ten years.

I was suddenly jobless, but within three months, we found out that Amelia was deaf and nothing mattered more than being with her and helping her recover lost ground. My life had been stripped back to the bare essentials and I found that I didn’t care about anything more than my daughter’s happiness. No job can compete with that.

I didn’t mourn the sudden loss of my career for too long and I’ve had a few false job starts since then; it hasn’t been possible for me to work for longer than a year or so in the middle of all of the real graft of raising an intense little person with very special needs.

I’m hoping the tide will turn in my favour sometime soon, but I have reserves of patience on that score. Life might not be strictly about me right now, but it will be again one day soon.

Over recent years – and forgive the introduction of a new analogy – life has felt akin to being in quicksand. The harder you try to grab onto the optimism of the proffered branch, the further you sink. And yet you do grow used to the uncertainty of it all. The not-knowing-what’s-around-the-corner nature of being in our family.

No caption required.

Maybe we’ve shed all of the onion layers we’re going to and have collected each flaking, brown piece to create a complete picture of our story. I’m not so sure. In fact, I’ll never be sure of that, not as long as I’m alive. None of us is in possession of an infallible crystal ball.

In any case, it’s a genetic trait in my family to expect bad things to happen to us. We’re almost annoyed when things go well because we have to accept that happy outcomes are possible. Good times are not to be trusted. There’s a sick kind of glee that makes us jump up and down and say “See, I told you!!” when life delivers us a body blow.

I don’t know if that’s a Scotch-Irish thing, a German thing, or just a really weird thing we’ve developed all by ourselves. But let me tell you, I think this sort of entrenched, biological masochism has set me up for the long haul. I’m not deriving pleasure from it, but it comforts me all the same.

Ogres are like onions and so is my life sometimes. Amelia’s catalogue of disabilities too. The general uncertainly of being on the planet and not knowing what the next day will bring. Let the layers fall where they may because I have a thick skin of my own and I’m ready for anything.