In dreams, you’re mine

WE WERE at dinner with friends when I saw the bonny baby at the next table. A new-born covered in a light muslin wrap, protected from the too-cool air inside.

His mother was cuddling him in the warmth of her arms. She rocked him back and forth, swaying rhythmically in her seat.

Her beloved one had just woken without protest, but she was soothing him with the closeness of her body, the soft murmuring on her lips.

I was mesmerised. Trapped in a zone with them I could never truly share.

There were no tears from him, no raucous babble; he simply stared up at her with fixated wonder. His mother.

The yearning inside me was powerful, like I’d been sucker punched without warning. It hurt in a distant part of myself I’ve tried to bury. But it’s always there; it grows stronger with age.

It rears its ugly head sometimes when I pass a pram in the street and glimpse the soft skin of infant feet, bouncing with the movement created by the street. My stomach lurches; I look away.

Or like the day when I was walking behind a man carrying a sleeping child in his arms and I put my hand out as if to touch a silken baby cheek. They moved out of reach and I let my possessed hand fall back by my side.

Every so often I cross the road to save myself the heartache. I don’t always have a choice.

This night, I stopped the conversation at our table mid-stream: “Oh god, look at that beautiful baby. Just there. He’s so sweet! Look how tenderly she’s holding him.”

My companions politely indulged me for a moment. I wanted to go over and hold that baby to my chest with a ferocity of feeling that shocked me.

It took all of my strength to resist the urge, but I wrangled it, pushed that dreadful longing down into the dark where it belongs. There’s no cure for it anyway.

So, I don’t tell anyone that it’s there. It’s a private pain that ebbs and flows.

Instead when I’m asked by strangers for the millionth time why we “only” have one child, I say: “No, I can’t have any more children, but really we were happy to have ‘just’ one.”

Or: “IVF was so very hard that we didn’t have the strength to go through it all again.”

And: “Our daughter has challenges and needs so much extra help and support. It was meant to be this way.”

We are lucky. We live with grief. But we have no regrets.

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.

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.

What’s love got to do with it?

Where it all started.

Since becoming a parent over five years ago, I have received lots of asked-for and unsolicited advice on just about any child-rearing topic you can imagine.

Every parent experiences this at one point or another. When you have a child with special needs – my daughter Amelia is deaf and has Autism Spectrum Disorder (ASD) – there are unlimited opportunities for people to weigh in and give it their best shot.

Many observations are like little gems; I hold them between my hands, turning them over to feel their warmth and absorb the good vibes within. These ones are keepers for sure.

Others, however well-intentioned, delivered by experts or drawn from experience, miss their mark, creating only harsh notes as they glance my shoulder and crash to the ground.

However surplus to requirements these opinions are, I still find myself carefully turning a few of them over in my often stressed-out brain.

This isn’t always a negative or masochistic process. It can be incredibly empowering to drag up some old advice handed to you about your life and see with increasing clarity just how misplaced it was and remains still.

One special example of this springs to mind, and it seems to grow in meaning to me the more I think about it.

The gap between my experience and this particular (I guess well-meant) remark has stretched so far apart you could fit the Pacific Ocean between the places we’re coming from.

It happened during a conversation I had with someone soon after Amelia’s ASD diagnosis was formally confirmed. We had spent many weekends going back and forth to a clinical psychologist and the results, which surprised no-one, were in.

Mostly what I hoped for from people was a simple acknowledgement of the news, and perhaps in that a sort of agreement would be forged among those closely connected to Amelia that we shared the same aims. To help her. To make things better.

That’s my personal definition of support. We confront a problem, give it a name and then we portion it out, dissect it and work out the best way to move forward.

I love her to death, but it’s not enough.

But not everyone approaches life this way. I’d begun saying to this person that I was feeling sad for Amelia about her diagnosis but that I thought we could now help her through treatment, but they stopped me and said, “oh you don’t need all of these LABELS, you just need to LOVE HER. That’s all she needs”.

Just love her. That’s all. As though love could ever be enough.

I was a bit shocked at the flippancy of it, at how far the words missed the point, but in that moment I didn’t really know what to say. I was trying to stifle tears and I knew that my thoughts wouldn’t come out clearly or kindly. So I gulped and pushed my response down until I was in a position to consider the comment properly.

There’s something so misguided about saying to a person who has recently received (more) tough news about her child in a family already dealing with so much that she only needs to love her and essentially everything will be fine.

Because everything is not fine. It wasn’t fine at the time and it’s not fine today. And just saying it’s fine doesn’t make things better. It just makes me angry, like molten lava could spew out of my eye sockets at the mere mention of the words ‘just love’.

If love was enough then I would not have discovered fertility issues in my late twenties and that we needed to undergo IVF in order to conceive a child.

If love was enough, I wouldn’t have had to be injected with hormones every morning by my husband for months and months until I was bruised inside and out.

If love was enough, I wouldn’t have had to endure the desperate weeks of waiting to discover if the two fertilised eggs placed inside me would make it. One did. That wasn’t a miracle of love – it was a victory of science.

If love was enough, I would have been able to have more children instead of finding out that my ovaries had withered on the vine by my 36^th birthday. Early menopause is not a gift of love nor is the wall you have to build between yourself and the endless questions about why you haven’t had more children.

If love was enough, I would have known instinctively that my cherished only daughter was in fact deaf when I first held her, instead of two long, costly years later. That’s not something that can be undone, no matter how hard we might wish for it.

If love was enough, Amelia would not have also been born with what the doctors call a ‘complex array of developmental issues’, including ASD. We don’t yet know all of the problems we are dealing with so we just attack them one at a time.

I don’t list this roll-call of personal setbacks to suggest I’ve had it harder than anyone else, or that I sit around every day feeling sorry for myself. Compared to Amelia, who am I to complain?

What I’m saying is that it has been my experience at the sharper end of life that love really isn’t enough. Interventions, by science and technology, by expert outsiders like audiologists, specialists, psychologists and so on have been unavoidable and necessary realities in the short story of my family.

It’s like being on

A merry-go-round

With no horses

And you can’t

Get off

Love is a fine anchor, a base from which to spring, a strong foundation, an incredible motivator, but on its own I’m afraid it’s pointless.

Over the last few years I have learned the hard way that work is the thing that, well, works. IVF works when your body can’t do the job on its own. Hormone replacement therapy works when you can’t sleep because you’re sweating six times a night like Albert Brooks in that scene from Broadcast News.

Rigorous and frequent exercise works when your mind can’t take the strain of the things happening to you. Regular tests, therapies and lots of practice work to help Amelia to speak, to be calm, to be well.

Without a doubt, I love Amelia more than I ever thought it possible to love another person. And this never stops, even on the most demanding days when she seems to hate me and the world for dragging her into it without asking.

Love (and Amelia’s early-bird body clock) gets us up in the morning for appointment after appointment with speech pathologists, our occupational therapist, a clinical psychologist, paediatrician, GP, even genetics specialists, but it’s sheer stamina that keeps us going, ever on to the next thing.

If you know all of these things about me, my life, my child and you can still look me in the eye and say, ‘don’t worry about all of that stuff, just hug it out when things get tough’ then you have failed to really see us and understand what we need.

To me, love is acknowledging our pain and our struggles as well as celebrating the amazing progress and milestones that follow. Anything less is a massive negation of that struggle, of the reality of our daily lives in the trenches.

I need more than whatever love is supposed to do for me. Along with hugs (which are great) I also need time, space, exercise, information, silence, solidarity, respite, contact, friendship, conversation, laughter, truth and action, to name a few key things.

If I ‘just’ love Amelia, then what else does she miss? It feels like a code for denial to me and I’m not playing that game. No way.

I wake up every day with a limitless base of love for her, but it’s the hard work and resolve that’s gonna get us over the line. We’ll keep our fairy tales for the night-time, when our toil is done and Amelia is happy, safe and well in the strongest arms designed to hold her. Mine.

It’s a small world after all

When I had a baby, one of the things I expected was that my world would contract while our little girl, Amelia, worked out how to live outside of the tightly confined space of my body after nine long months.

Nothing can really prepare you for the intensity of that newly contracted space as the changed dynamic of a family of two adults adjusts to life as three, including one small person who is completely defenceless and totally needy.

But the thing that got me through the life-changing chaos of those early days was the promise of growth, of progress – of the eventual expansion of that changed world we now occupied. Its limits would open out to include old experiences temporarily shelved or new ones we had yet to discover.

Expansion could mean anything, like us being ready to go outside and take a walk with our baby in the pram. Or feeling able to sit down at a café and order a coffee while (fingers crossed) she slept. Just 10 minutes, not long, to feel like moments of the old life could be incorporated into the new.

During the first year, progress included things like visiting people or taking short trips together. Our first holiday was a driving expedition across the state for two fabulous weeks. Amelia was seven months old and apart from the logistical challenges and the cold weather, we created some of our best family memories on the road.

The world of our family grew at about the pace you would expect – just fast enough to adapt to the challenges of each main stage. We imagined that this expansion would just go on and on. And hopefully, it would bring more SLEEP (it didn’t).

Our ambitions for growth extended to things like going to the zoo, the circus, the movies, or that brilliant outdoor production of The Wind in the Willows performed in Melbourne’s Royal Botanic Gardens every summer. Amelia would join other children and follow Toad, Rat and Mole down the River Thames.

Silly things, I guess, but they’re the stuff that parental dreams are made of, at least for us. You picture sharing magical new events with your child and it’s only a matter of time before you get there.

But it’s not. Not for us, anyway. Before Amelia turned three, I thought for sure we were on track to growth and progress but since then (and with the escalation of her autistic behaviours) our world has been steadily contracting again, even where seemingly trivial things are concerned.

It’s not exactly like the first few months of Amelia’s life, that almost suffocating isolation of early parenthood, but some days it’s not far off.

Even ‘easy’ activities like going for walks to the park, or actually being at the park have become fraught with danger and the promise of failure.

Last weekend the sun greeted us upon waking so we thought, ‘why not try for a walk outside and see how we go?’ We jumped into the car and headed to a lake area with a lovely walking track and playgrounds at either end.

But we didn’t get too far. About 100 metres actually, in about 40 minutes of movement in large, frantic semi-circles punctuated with frequent tantrums while fellow families streamed serenely past on bikes, scooters or just on foot, ever moving forward while we stayed in one place.

The ease of their walking and forward progress, this evidence of how different their lives are to ours, made me feel desperately alone.

If I do manage to get Amelia to a playground (usually by car for sanity’s sake), she will invariably become anxious or angry about some indefinable thing and so we have to leave. It’s like she’s suddenly forgotten how to just be at a park, how to play on the swings and slides and enjoy herself.

The zoo (like any busy, public place) is a nightmare venue to take Amelia and I have tried it several times. She doesn’t really understand how she’s meant to behave or what she’s supposed to be looking at. Such a shame for a girl who loves animals so much.

The sights and sounds seem to overwhelm her auditory and visual senses so we cover little ground before another meltdown kicks in and our departure becomes long overdue.

I used to visit my Mum frequently to break up the stress of the days spent at home, and Amelia always enjoyed this time with her beloved Nan. Now she becomes highly fearful and angry at the mere suggestion of going there so I’ve had to cross that safe house off our list for the time being.

If I manage to convince her to go there, Amelia will begin insisting that we leave as soon as we have arrived and repeat this request incessantly into my face or by urgently curling my hand into the Auslan sign for home until I acquiesce. You can see it’s hardly worth the stress.

So, for the most part, the world has contracted once again to the boundaries, nay the limits, of our family home. The walls have closed in and sometimes it’s hard to breathe. Sure, we can enjoy the garden together, the lovely outdoor spaces when the weather allows, but some days that doesn’t feel like enough.

It’s school holidays right now and those weeks are by far the worst. Not for reasons you might expect – I love to have Amelia with me and to slow our routine down to a lazy jog rather than the frenetic sprint it usually feels like to get to kinder and the like. We make our own fun with paint, play dough, cooking and silly games.

No, what makes me feel so bereft at these times of the year is the painful exposure of just how small our world is, how limited the opportunities are for being out and about together.

Lots of other families get to plan things like long trips or day excursions or even just walks to the park. They say they’re going to do it and they just go and do it. Idea becomes reality; the run-of-the-mill activity or the special childhood dream event happens and the photos are added to the scrapbook.

The novelty of this is like a curio I’m peering at through a glass cabinet – I can see it but I can never reach out and touch it for myself. I’m told that things will get better and our world will expand once again but I can’t afford to create more fantasies that are beyond the capabilities of my daughter to fulfil.

It’s not fair on her and it just breaks my heart.

[For TR, who’s in the trench with me and I wouldn’t have it any other way.]

On being brave like Coraline

“Being brave doesn’t mean you aren’t scared. Being brave means you are scared, really scared, badly scared, and you do the right thing anyway”.

“I’ve started running into women who tell me that Coraline got them through hard times in their lives. That when they were scared they thought of Coraline, and they did the right thing anyway”.
— Neil Gaiman, on Coraline (2002)

Coraline, the intrepid traveller

Neil Gaiman’s book, Coraline, tells the story of the eponymous girl-heroine who goes through a mysterious door at home and finds a parallel-but-more-than-slightly-off version of her family life.

At first the door opens onto a bricked-up wall – a barrier between the here and there – but for Coraline it later reveals a once-hidden corridor to a place where her parents have buttons for eyes and everything is a little too perfect for comfort.

Like Pandora and Alice before her, Coraline’s curiosity (and profound boredom) compels her to open the door and enter without thinking first about the risks. Her mantra is and remains, “I’m an explorer”, and because her parents are too wrapped up in work to notice her departure, she takes advantage of the free rein.

In the breathtakingly spooky stop-motion animated version of the book made by Henry Selick in 2009, the door is a tiny cut-out set low to the floor. It has been papered over but its outline and keyhole are still visible and the old key still works in the lock. It’s a door that just begs to be opened.

Once unlocked, it exposes a magical, blue-lit worm tunnel that seems to shudder and move like it’s alive; I don’t think it’s a stretch to see it as a fantasy birth canal, delivering Coraline into the place beyond the door.

Searching for fun, adventure and nourishment, our girl finds her Other Mother and Other Father waiting on the other side to ‘love’ and ‘entertain’ her.

They are creepy renditions of her real parents, like the doll she is given that bears a resemblance to her but loses something vital in translation from fabric to girl.

But Coraline is smart and she instinctively reads a warning in the outer signs of this same-but-different world, like the horrifying, black buttons everyone has instead of eyes. There’s something so shiny yet dead about them – no smile will ever be reflected there, nor anything natural or good.

Though filled with freedoms and delights unavailable to Coraline ‘back home’, this ‘other’ place is really an elaborate trap. It’s a web dressed up to look like her heart’s desire by a very cunning spider (the Other Mother), who aims to catch, keep and devour her.

The request to have her own eyes sown with buttons by the Other Mother is a bit of deal-breaker for Coraline, as you can well imagine. The last time she goes through the door, it’s to rescue her real parents who have been captured by the Other Mother to draw Coraline back to her.

The courageous girl confronts many fears in her fight against the will of the spider-in-Mother’s-clothing; hideous things like dog-bats, a slug in an egg-case “as if two Plasticine people had been warmed and rolled together, squashed and pressed into one thing”, and a shapeless grub, with twig-like hands lunging at her in a dark basement.

Despite this catalogue of horrors, Coraline tells herself that she’s not frightened “and as she thought it she knew that it was true”. One can only marvel at her bravery, at her brilliant use of positive self-talk.

Gaiman’s wonderful, terrifying story and its film adaptation struck a huge chord in me. Aside from the delicious thrill of the tale as I tucked my feet under my body (lest a spidery hand should grab me from under the couch), the idea of being caught in one world while longing for another was painfully familiar.

Most of us live with disappointments and frustrations in the ‘real’ world and perhaps fantasise about an ‘other’ world, where the colours are so vivid and the experiences so rich we don’t have to confront hard things.

Coraline imagined a world where her parents would be different, remoulded into people who cook her appetising meals and exist solely to amuse her, and so she was offered a brief glimpse of what that life might be like.

It is a credit to her that she rejects that life as a lie, even if her real existence is less than ideal.

For me, an ‘other’ world would be a place where I have no big-ticket worries. In it, the Other Amelia, the facsimile of my daughter, is not deaf. She can hear everything and anything and she can speak fluently and tell me her mind. And she definitely does NOT have buttons for eyes.

The Other Amelia is a child without autism. The words disorder and delay are unknown to her, to me. There is no sensory chaos and making friends is easy. Anger, rage and hyperactivity belong to another hemisphere of experience. To another child.

We walk together slowly and she holds my hand, never running away. And we sleep for a very long time.

But if I take these things away from her, who is the child left over? Is it still Amelia or a distilled version of her, a person negated? Does she become like one of those husks left behind when the Other Mother is finished feasting on little souls?

She would be different, yes, and maybe her life (and ours) would be easier, I am not afraid to admit that I do wish it sometimes.

But she would not be my Amelia. To excise one element would be to ruin the whole, to make her less than she should be and much less than her strong personality makes her.

I myself have opened many doors containing fearful things since that first one, when I gave birth to my girl, and there is nothing scarier than suddenly becoming responsible for a tiny, vulnerable human being.

I didn’t know for instance that deafness was behind another secret door in the house of my family. I only knew that there was some dark problem lurking there and it had to be unlocked, no matter how afraid we were.

If Amelia can be brave, then so can I

As for autism, perhaps my greatest fear of all, well, that one has whispered to me through keyholes from the beginning, and over time it has become a shrill and insistent voice, demanding to be heard. Okay, I surrender; we have opened that door now and let the truth of it in.

Like calling out the bogeyman who lives under your bed (or Bob from Twin Peaks who crouched under mine for all of my adolescence and part of my adulthood), the most dreaded thing is never as daunting when you drag it out into the light.

I love Amelia more than I love my own life or anyone else’s. She isn’t defined by her challenges but they are part of what is shaping her, in the mix with her character, her brain, and her heart. So we must embrace it ALL if we are to keep her happy and safe on this side of the door with us.

But my anxiety about further unknowns surrounds me always, crowding me for space and air, and I can’t just hide from it in some fantasy world.

Because like Coraline, who my own gutsy daughter adores for her blue hair (and insists her own hair be styled to match), I have to do the right thing and face up to what scares me and keep telling myself, “I will be brave. No, I am brave”.

A scar is born

Sofia Helin as Saga Norén, wearing her scars with pride

I have this tiny scar on my face, just under my lip where my little girl Amelia accidentally hurled an iPad in my direction during our last summer holiday in a lakeside town.

I was half asleep, lying on the bed, so I wasn’t ready for the force of the blow; I could not defend myself as the sharp corner of the device crashed into my face, leaving a deep hole in its wake.

My hands flew up to my chin in shock, and when I removed them I saw the unmistakable red of my own blood, pouring from the wound onto my fingers, and marring the whitest of white sheets (not my own). My god there was a lot of it.

I screamed. Amelia ran.

Frantic, I ran my finger inside my mouth to make sure that my teeth were intact. My nails sought confirmation of structural safety as they travelled gingerly along my gums.

My choppers were okay; my gums were torn but I did not lose any teeth that day.

The women in the local chemist looked dubious at my claims of a close encounter with an iPad of the flying kind. Unbelievably, it was a first for them in the town. How very modern and high tech of me to present with a wound attained in such a way.

They took one look at me and sized up my predicament – band aids and steri-strips would not suffice here, only stitches would do. I was packed off to an ancient GP practicing at the medical centre around the corner.

I was seen to immediately and I thought ‘Oh no, what is this decrepit man with the shaky hands going to do to my face? I’ll walk out of here looking like Frankenstein’s monster”. So vain, so very vain.

But he was in fact a master surgeon in pensioner’s clothing. As I lay on the exam bed in his office, I glanced up to survey the official-looking papers framed there, a lifelong testament to his expertise in greater things than minor cuts and abrasions.

Three stitches later, his exceptional needle work was done. My face was swollen and numb from the solution used to dull the pain of the stitching, but at last the bleeding had abated. Outside the cool, sea-breeze was a gentle salve to my traumatised face.

Amelia didn’t make eye contact with me for 24 hours after her mighty swinging action set the events of the morning in motion. Shame and fear drove her from me.

But slowly she made her way back, drawn to the black stitches protruding from below my lip, fascinated by the sharp feel of them. I let her touch them and talked to her softly about what they were.

Emboldened by my sweet reception, she began play-acting the fateful moment that the iPad left her hands and slammed into my prone head.

As though it had happened to some other mother and daughter, Amelia mimed the story with great excitement and swashbuckling verve. The magnificent Jean-Louis Barrault would have applauded her artistry.

For me, the healing was better and more rapid than I had anticipated. With care, gums, mouth tissue and skin repair quickly and well. In time, Amelia stopped mentioning or performing the accident and I was not one to remind her.

The summer holiday rolled on and I got over it, in body and spirit. But I have this little souvenir – my tiny trail of a scar – to ponder sometimes in the mirror or when my hand strays to feel the slight indentation under my lip.

I really thought I would mind that mark, that I would resent the imperfection, but I have grown to appreciate its presence on the left side of my face.

It reminds me that in some ways my life is not what I thought or hoped that it would be. That things have happened to my family that we did not foresee and we have had to try and accept them.

But like all scars, mine is unique and has its own peculiar beauty, as do those spidery blemishes that seem to enhance the visage of that unforgettable Nordic heroine, Saga Norén from The Bridge. Her scars are like a question with no answer; they foreshadow a depth of experience, but they in no way detract.

Now that it has healed, my small scar sits in harmony alongside the other features on my face, none of which are perfect or conventional in any case. It belongs to me and it is permanent, like so many of the things that have happened to my family, to my daughter.

And yet it is not a cross to bear, just a sign that at times I have known temporary pain and suffered wounds that felt so raw in the beginning that I thought they would never heal.

As sure as the mark on my face that no-one can really see but me, I know that new injuries will also settle and be reconciled with the rest of my life and recede in their importance.

They will become a natural part of the everyday, these scars worn with secret pride in the overcoming and acceptance of a fate very much out of my hands.

Parent or advocate?

You are the best advocate for your child.

You are the expert on your child.

If I’m going to box, I want to be directed by Scorsese

If I’ve heard these weighted expressions once, I’ve heard them a thousand times over the last two years. Sometimes they are like straitjackets, pinning my arms to my sides, suffocating me. No matter how hard I struggle against the bonds, they will not break.

When I am not so angry and more accepting of my job as an externally appointed parent-advocate-expert (a triple threat, if you will), I find I can walk the line and just cop to the fact that I have to keep my eyes peeled and my sleeves rolled up. You know, all of the time.

Because there’s no choice, between one role and the other, not at my end of the parenting game. I can’t just say “yeah, you know, today I don’t feel like being an advocate for you Amelia, I kind of just want to run away to the movies and hide”.

My responsibilities would find me there anyway, up to my shiny eyeballs in popcorn and lust for Mads Mikkelsen.

Generous people tell me I’m doing an amazing job at it, because I’m tough, because I have fought so hard for my daughter and, I guess, because I’m still standing. This is reassuring to hear because I don’t really know what the hell I’m doing most of the time.

But in all honesty, I didn’t want to have to be a pugilistic parent/advocate. Not at all. It doesn’t really come naturally to me, this so-called toughness. I just wanted to be a simple parent, an ordinary mother.

When I was going through IVF treatment, I didn’t dream of much more than the birth of a healthy child. My hopeful mind dared to stray to thoughts of long, slow walks with the child of my future – I would hold her little hand and whisper secrets about the world into her ear.

Now I want to laugh in the face of that woman, who thought that the realisation of that dream was the one battle she had left to fight. That poor woman who was so deluded she put her boxing gloves away and let her guard down. I do not recognise her in myself anymore.

But resistance is futile when you become the mother of a child who needs so much more than nappies and lunches and lullabies. If you don’t take on the mantle of advocate and close the gap between your child’s challenges and other people’s understanding of them, then they will fall into a crevasse the size of Western Australia.

So get over yourself and get on with it. That’s my personal mantra. It’s not very poetic as mantras go, but it’ll do for what I have to get done.

If you are wondering how advocacy works in my situation, as the mother of a deaf child with additional needs, well here’s a list of some of the essential gap-closing things I tell people who interact with Amelia:

1. Amelia has a moderate-severe/profound hearing loss which means that without aids she can only hear fragments of words or really loud noises like a vacuum cleaner, a motorbike or a stereo cranked up to 11. Here’s a handout from Australian Hearing which perfectly illustrates this information (I gave this document to lots of people in the early days and still carry a worn copy in my bag),
2. With hearing aids, in a quiet room, when you are close by, facing her and have her full attention, Amelia can understand you very well,
3. If you want to get Amelia’s attention, you can touch her on the shoulder, tap the table in front of her or stamp your foot nearby (I also have fact sheets about how to communicate non-verbally with a deaf child which I have distributed when necessary),
4. Please make sure Amelia can see your face when you are trying to talk to her because she relies on the cues she reads in your expression and lips to follow what you are saying; kneel down at her eye level and make sure you don’t cover your mouth,
5. If Amelia is not wearing her aids and you are talking to her back or from across the room, SHE CANNOT HEAR YOU,
6. Well-lit rooms are the best for maximising how much of your facial expression and lip movement Amelia can see when you are speaking to her,
7. Background noise, like booming televisions or loud music will radically reduce how much Amelia can hear (her hearing aids are powerful but with competing sounds, they will not be able to pick out and make sense of softer conversational tones from the wall of noise). That kind of noisy room is an acoustic mess for Amelia, so please turn the sound down or off,
8. Amelia is a visual thinker and learner, so even if you don’t know any sign language, lots of gestures to communicate with her are welcome,
9. Amelia’s hearing loss was diagnosed very late, so her speech and language is delayed. But she can understand a lot of what you are saying, so please don’t stop talking to Amelia just because she can’t necessarily answer your questions or speak like other children her age,
10. Amelia is highly fearful of certain situations, such as doctor’s examinations or tests, so please be understanding if her behaviour seems manic and a bit naughty – it is only because she is afraid and stressed.

Amelia and her Nan, up close and personal

I figure if you know these things about what it’s like to be Amelia and cope with a significant hearing loss in environments that are often set up to think of her needs last, then maybe she’ll have a fighting chance to access the world on a more level playing field.

But you have to meet her where she is, not the other way around.

You can never assume that people will know anything about deafness, its complexity and how it affects an individual child, either through experience or instinct. Even if you meet someone who knows a little bit about some of the issues involved, they won’t have any idea what they mean in Amelia’s case.

That’s precisely why it’s my job to pave the way and educate. I’ve had to learn so much myself, about audiograms, hearing loss, hearing aids, sign language, and cochlear implants, not to mention how my daughter’s life is impacted by her challenges and what strategies might serve to help her.

In certain situations or with particular people I find I have to repeat myself many times. I’m sure that can be annoying, but I can’t afford to care.

Other times I grow weary and give up after restating the same message in different ways (gently, incidentally, directly) when it just isn’t being heard and taken on board.

In those moments I feel like I am failing Amelia by not pushing past my own emotions and hammering home these messages more forcefully.

I’m no expert on Amelia – she defies being pinned down or defined – but I know that when we go to have her hearing tested every eight weeks, she will only tolerate soft headphones (not the tube phones inserted into her moulds or the bone conduction ones with their hard edges) and we have to warm up with the marble game first (try it, it’s tremendous fun).

Amelia and me – we’re in this together

If someone forgets these little details, I’m there to remind them and I always ask to wear my own pair of headphones because I know this makes Amelia feel like we’re in it together. And we are.

We used to have inexperienced graduates assisting our main audiologist with the testing. By the time they had worked out the equipment and how to set up the games, Amelia was half-way out the door.

After a few conversations with the clinic, we now have two senior audiologists with us every time a test is conducted. It’s harder to find a time-slot, but getting regular and accurate hearing test results is too important to settle for anything less than the best.

At the moment, Amelia attends both a mainstream kindergarten (one day per week) and a deaf kindergarten (two days). At the latter, I can for the most part take my advocate’s hat off, because her teachers understand deafness (or are deaf) and so I don’t have to explain anything about the big ticket items on our list.

I know some things get missed at her other kinder, based at a local childcare centre, like hearing aids not turned back on after a nap, music played too loud or conversations held around Amelia rather than with her. But by and large the people there have been amazingly inclusive of my girl and her needs.

More than one child care worker over the last two years has paid their own way through Auslan courses and worked with our Early Intervention service so that Amelia can make the most out of her time with them. The staff took the education process to another level on their own initiative and I truly love them for that.

It is also a nice surprise when I come into contact with a person or organisation, equipped with my advocate’s bag of explanations, and find that they are already primed to meet Amelia where she is.

Exhibit A: I called a local youth theatre the other day to talk about a Drama Play program for three-five year olds. Our paediatrician had told me that they often work with deaf kids so I should see what they might have for my ‘artsy’ Amelia.

I was quickly transferred to their Access Officer (already a promising start) and told her about Amelia and that we wanted to try the program in term three. She was so positive and excited about welcoming Amelia into the program, which she said would be perfect for her.

She said, “Does she use an FM?”

“Um, yes, she does sometimes”.

“Great, bring it with you, we use them all the time. I’ll set up a meeting with our artistic director running the program so you can come and in and tell us all about your little girl. If we need to organise for an interpreter or any extra support we can do that at any time”.

Me, “………………………..

I didn’t need to say anything else because she had closed the gap of understanding before I needed to leap in and unfurl my list of ‘stuff’ about Amelia.

This type of interaction is rare but when it happens you have to sit back and appreciate how liberating it is when someone just ‘gets it’ and you don’t have to endlessly explain. I’m told it’s not my default setting, but I really do like shutting up when others cover the bases ahead of me.

So for a few blissful minutes on the phone, I was just a mother who was neither an advocate nor an expert, and in my experience those moments are worth their weight in gold.

A letter from my mother

I’ve been thinking a lot about grief and loss lately, how it takes many different forms and the ways in which it alters a person who has been through a radical, life-changing event. How people cope with these events and work their way through the mire will be a recurring theme in the pages of this blog.

Recently, I wrote a lengthy post about the day back in 2011 when Amelia’s hearing loss was first discovered, but I decided against publishing it because it was a bit too close to the bone. In that case, the writing of it – the getting-it-off-my-chest bit – was the point, not the need to share it.

The snapshots of that day – the car ride to the final appointment with dread knotted inside my stomach, the grim formality of the hearing test as my baby tried valiantly to please the assembly of adults, uncontrollable tears shed inside hospital corridors – are, I think, sufficient to describe the pain I felt back then.

During the months that followed, it was like I was split into a number of distinct selves, all coexisting inside a grieving whole.

One part, the purely physical, peeled off to meet the demands of the day – getting out of bed, having a shower, feeding my child (maybe even myself), responding to basic questions and just keeping the family engine running. Life doesn’t stop just because your heart is broken.

Another part was the intellectual self which mobilised to attack the diagnosis head on. There was the navigation of medical appointments, reams of paperwork to be interpreted and filled out and masses of reading material on deafness to analyse and dissect. My mind sought to regain control over the grief by mastering information. I devoured it all.

The final part that was left over was submerged somewhere during the day, waiting, while the business of life and the post-diagnostic reality marched on. It was that fragment of me that splintered off in the testing booth and couldn’t be fused back on in a matter of days or weeks.

When the day was quiet again, I found a private place to let that shattered self have her grief in spades.

What I also remember vividly about this time is how much I needed to be with my Mum, to just sit in her familiar house or in her arms and be a child again, free from the worries of adult life.

Inside your own grief, you don’t necessarily notice the residual effects on the people closest to you. Grief is naturally selfish and mercenary like that.

Of course my Mum was suffering but what I didn’t realise is that she had written her pain down in a letter to herself, the night we all stepped off the edge into Grief Town.

In the letter, she retraced her steps to the start of the day before she heard the news from me (yelled down the phone from my car). Then she wrote about the moment when I told her that Amelia was deaf, about her feelings, her sorrow, as she stood in a car park trying to work out how to reach me fast.

The specific contents of the letter must remain between us, but it charts my Mum’s own sense of loss (what the news meant for Amelia’s life) and all the signs she now recognised (things about Amelia’s behaviour that suddenly made sense).

She wrote ‘wrong’ and ‘sorry’ many, many times. But it ended in hope, with the conviction that our dreams for Amelia would return.

I didn’t know about her letter until she mentioned it to me a little while later. Naturally I asked her if I could read it. Instead, Mum handed it to me, saying it was now mine to keep, to be read in my own time.

That night after the daily routine was over, I sat down by myself and unfolded the letter. It moved me so much to read the pain-filled words of my beautiful mother, rent across those pages in a frantic staccato that resonated so deeply.

She was trying (as I am here) to capture something difficult to nail down, to make sense of what we’d been told, to unburden herself and work it through. She did not know it then, but her words, as much as her arms around me, were the greatest gift to the part of me that was heartbroken.

Because my Mum got it, she understood the meaning and the cost of what had happened to our family. I didn’t have to explain my darkest, saddest thoughts because they were mirrored on the pages in front of me. They were shared.

The isolation of grief is founded on the distance between your own feeling of sorrow and others who can’t relate to its depth or impact. It’s not that people don’t try or want to connect with you. It’s just that the ‘thing’ is happening to you in its own, individual way and so you are essentially alone.

You can be in the same house of pain as 10 other people but eventually you have to return to your own room.

My Mum didn’t know that when she captured her own grief, committed it to paper and delivered it into my hands that I would feel a little less isolated than I did before.

It’s that same feeling I get when I communicate with other parents in similar situations to ours. There is an innate, shared understanding and in that I find great solace. I hope that anyone who has experienced grief for whatever reason finds others along the way to join hands with in solidarity.

So by way of return post, this is my response to that special letter from my mother. She didn’t write it to me or for me in the beginning but it is mine all the same.

I want to tell her that I carry it with me every day and sometimes I take it out and hold it in my hand without reading it, because just knowing that it’s there, that SHE is with me, made a difference to me when I needed it the most.

Welcome to Holland?

Not Italy, as it turns out

The day we found out that our daughter was deaf, we were given a blue book called ‘Choices’ (Australian Hearing). The first page of the book features some prose called ‘Welcome to Holland’ by Emily Perl Kingsley, aimed at parents whose babies are born with an unforeseen challenge or disability.

The basic premise of Kingsley’s piece is that having a baby born with some kind of challenge is like planning a trip to Italy, but when you land (post-birth) you are suddenly told that you have arrived in Holland. It’s not where you intended to go but it’s not a terrible place, just different to what you expected.

There’s nothing flippant about her use of the analogy. She’s asking parents to try and adjust their thinking about their loss, their shattered hopes for their children and start to consider the special things about Holland. Because, and this is the key, you ain’t going anywhere else.

But on D-Day (Diagnosis Day), I wasn’t ready to be philosophical about what I was feeling, which was absolute devastation. Because I had thought we were in Italy for more than two years.

We’d arrived with our bags, unpacked them, explored the sights and started to put down roots in this strange but exciting place. I’d relaxed and allowed my shoulders to drop a little. It felt like home to me.

Finding out that we were actually in Holland – that my cherished daughter could not hear me when I sang to her or said her name or told her that I loved her – swallowed me whole and kept me in the belly of grief for a very long time.

I couldn’t contain my anger and pain at the ‘lie’ of our time in Italy. I felt cheated, like we’d been made a promise and sucked into the pretence that we had ‘made it’, when all the while the ‘truth’ of Amelia’s deafness was lying in wait for us.

It was impossible not to feel alienated by the endless holiday stories of friends and family who took that journey to Italy with relative ease, over and over again. It stretched that distance – from Italy to Holland – between me and others, that began with infertility and, I thought, ended with IVF success.

Now the gap had widened into a bottomless hole and I experienced a powerful sense of isolation from people. Every time I saw parents with their kids at the park or at parties bonding through incidental chatter, my heart cracked a little more.

This was more like far-flung Siberia than a nearby Western European country.

I know this distance changed me, made me harder and there is part of me still bruised on the inside. In a way, I chose not to heal all the way through because this toughness is something I’m oddly grateful for.

It keeps me strong in the fighting zone, which is where I so often have to be for Amelia: punching hard in her corner.

I have come to realise that you don’t mourn forever and the parts of you that still grieve rear their hydra heads less often. And good people keep building small bridges that reach you and help you to make it at least part of the way back.

Cos it’s only Italy, right? That’s what people tell me. There are plenty of other places we could have ended up. I see it in Amelia’s deaf kinder class every day and it never fails to floor me and bring me back to myself.

And what of Holland? It takes a lot of work and even more time, but eventually I did accept the pain and incorporate it into new plans for the future. It’s not all tulips and windmills and sometimes the snow obscures your view of the path ahead, but it’s unique and rewarding in a way I never imagined.

Recently I have found myself able to take out those pictures and memories of our time in faux-Italy. It’s bittersweet but my heart doesn’t ache as much as it used to. Amelia was as beautiful to me then as she is now, and nothing will ever change that.

Amelia: where wouldn’t I travel for her?

I’ve also made some kind of peace with that feeling of betrayal that buried me deep for almost a year and that is a very good thing.

We only had one shot to get to Italy or anywhere on the map as it turns out. But if we’d known before Amelia was born that we had a one-way ticket to Holland, I’m sure we would still have chosen to go.

To meet our daughter, to bring her into the world and hold her close, I know I would have gone just about anywhere.