In dreams, you’re mine

baby-photographyWE 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.

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Carrying the mother load

Kicking back and growing up

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

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

Oh, the luxury.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That grief grows smaller but it never leaves.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How do I love thee? Let me count the ways

Taking a spin with a true dancing queen

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

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

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.

Ogres are like onions

Shrek in existenstial crisis mode.

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?

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.

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.

The dad who went up a hill and carried his daughter down a mountain

Finally, a father (2009)

Finally, a father (2009)

I AM only just beginning to understand the pain my husband has carried with him on our path to parenthood. It’s a subterranean heartache but I can feel it beating beneath the surface of our lives, growing louder when times are hardest.

In his eyes I can see the cost of past experiences that have made him yearn for deeper bonds with people. Friendships are deeply important to him, as is that reciprocal give-and-take of a connection truly shared.

When it came time to start a family of our own, I know he (like myself) hoped to fulfil the dream of having a baby – son, daughter, it didn’t matter – who would hold him close in the deepest relationship yet possible. The one with his child.

As a family, we would achieve a grand closeness never before seen in the universe. In short, we would grasp hands and never let each other go.

But try as you might, it is futile to pretend that any of us can control life in this way. Nor is it right to expect that a child should act as some sort of gap-filler for relationships that spun away from us in our childhood.

Together, we have learned this lesson the hard way. Our daughter Amelia, who is now five, did not receive our exhaustive memos in utero about close companionship or ready compliance.

The lists we made detailing the places we would go, the activities we would share, the things we would teach her: all were lost in translation from imagination to stark reality.

Amelia arrived without knowing the great weight of expectation we had heaped on her shoulders. In turn, it took us time to learn that she is deaf and has autism too.

That second, more recently identified fact, struck my husband in the chest like an arrow shot. The wound has not yet healed.

For him, I think it must sometimes feel as though he has been thrust back into the more troubling spaces of his past. Of his longing for companionship and finding only barriers where open arms should have been.

But this is much, much worse, because here we are talking about his beautiful, cherished daughter. The person he most longed to meet and who, when he found out we were expecting, nearly collapsed from paroxysms of joy.

During the worst phases of Amelia’s rages, he has woken daily to chaos only to return at day’s end to find similar chaos readying itself to greet him once more. I am lucky, because I have been around to witness and enjoy the moments of calm that happen in between.

He has spent endless hours trying to get his daughter to listen to him, to calm down or just sit with him and play. If only for a few moments.

Often the greatest challenge is asking Amelia to leave him alone. She craves closeness too, but filtered through her autism it’s all rough physicality and she can’t moderate the need in an appropriate way.

So, she presses herself on him, lies on him, punches him and pulls at his face until he often has to abandon her and lock himself away.

But over five years of incredible ups and downs it is possible (read = mandatory) to adjust one’s expectations of family life. We have had to put on hold some of the things we hoped to do together. Little things that the majority of people take for granted every day.

We make do with living as a family unit that sometimes needs to split up and create more manageable compartments to survive. It’s crucial to recognise which combinations work best for Amelia depending on the situation.

A rare football victory in the early days.

A rare football victory in the early days.

Like going to the football. For as long as I can remember, my husband has dreamed of taking his little girl to see our beloved Bombers play. He would dress her in red and black and talk to her about the rules and the players. We can’t control much but Amelia has no say in which team she is required to barrack for. No matter what their recent transgressions, we’re an Essendon family through and through.

Sadly for my husband, taking her to games is too high-risk an activity right now. After about the age of two, Amelia has found it impossible to sit down for longer than a few minutes and the combination of crowds and noise makes it too stressful for her.

Very swiftly, Amelia starts to lose control and, as is the ritual, her Dad is forced to carry her screaming form out and away from the din, from those screaming just as angrily at the umpires. It’s not fair on either of them to pretend the result can be otherwise. At least in the short term.

So we achieve a domestic harmony of sorts by being ultra-sensitive to Amelia’s needs and abilities. And by looking out for each other as parents, and as individuals. So when her Dad goes to the football it is not with his family but with other Dads and their children.

Like a genial uncle, he sits with them and talks to them about the game he loves and wonders at how still they are. How easy it is to be with them. And he wishes he didn’t have to leave his daughter behind.

But just because he sometimes has to be apart from her, as I do, that doesn’t mean he hasn’t looked for other ways to connect with her. To make himself feel like her father, and she his daughter.

So what do they do? They walk. Most Sundays, Amelia and her Dad drive to sundry parks all over Melbourne and beyond and just walk. It’s more like ranging really, up hill and down dale, whether it’s raining or not.

Discovering happiness on the hills of Melbourne.

Discovering happiness on the hills of Melbourne.

Amelia is a terrible walking companion. She has no sense of safety, she strays, and runs away and follows other people and animals like a hybrid canine-child catching the scent of something colourful, fun or more interesting over there. Always over there.

Last week she spotted a group of horse riders and careened headlong into a valley after them, with no fear of equine retaliation. The riders shouted at her to stop and thankfully she heeded their harsh tones. My husband recalled it to me later, the sense of helplessness as she broke away from him and sprinted towards potential danger.

Clearly rambling with Amelia is absolutely exhausting. But, for all that it is taxing, her Dad loves it too. Walking in the outdoors was a treasured part of his upbringing and now it is his gift to her.

Because regardless of the weather or the clouds that pass over her face from time to time they are together. They’re not at the football, or visiting friends, but on the hills of Melbourne they have found each other through walking.

And when they come home to me, their faces flushed from the elements and the joy of adventure I see only closeness. I see the beauty and the depth of their relationship as father and daughter.

For T, with love.

What’s love got to do with it?

Where it all started.

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.

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 36th 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.

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.]