Time to fly

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

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

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

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

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

 

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.

Amelia’s midnight garden

She whispered me her nightmare
Crouched in the quiet of the dark
She said
A man-sized cat came out of the garden
And the dirt behind the bushes
Had shifted and lifted up to
Cover her tiny mouth.

Her dark eyes were moon-like
As she clutched my hand
Too hard
And spoke her tale of dread
Of animals not being what they should
And the dirt doing what it could
To cut her voice dead.

My own eyes looked up and out
Beyond the window to the trees
To catch
Signs of the dream in her head
Of lurking feline giant shapes
And murderous soil creeping up
To kill us in our beds.

I whispered softly to my love
It was only a movie in your mind
Not real
Then I signed away her final fears
And sang a song she could not hear
About night-time cats now sleeping
And the garden dirt forever still.

On finding solace in the dark

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I hear taunting voices in that dark room too.

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

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

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

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

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

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

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

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

Carrying the mother load

Kicking back and growing up

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

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

Oh, the luxury.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That grief grows smaller but it never leaves.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Awake is the new sleep

Sleeping soundly with stacks of ‘stuff’.

IT’S DAWN, barely a trace of sunshine coming through the windows, and already I can hear her crashing around in her room.

The Kraken, also known as my six-year-old daughter Amelia, has awoken.

I know this because I can hear her clumsy, elephant-like footfalls pounding into the floorboards. Amelia is awake and the whole world must know it.

It would be churlish to complain because she is deaf and so has no earthly idea how loud she is, as she moves around gathering her numerous comfort items from the bed for transportation into the lounge room.

This is the routine for her, everyday, my girl who hears little of note without hearing aids and is well and truly on the autism spectrum.

Amelia uses various collective nouns to describe her personal treasures. They are her ‘things’, or sometimes, her ‘stuff’.

“Where is my stuff Mummy? I need my THINGS!”

I always know where her stuff is because it is never far from her side. Amelia burrows these objects into her bed covers at night and I have to creep in after lights out to extract pencils from her hair and uncurl sweaty fingers from straws, tape, glue-sticks. The lot.

For a young child with autism, the ‘things’ have a deep meaning that is mostly beyond our reach. But what we know for sure is that they are absolutely vital to our little magpie’s sense of security, her sense of self.

Amelia clings to these things like a lifeline to some magical source of strength and energy known only to her. With them, she is safe.

And so, each morning, this curious set of bits and bobs is dragged from her room and deposited next to her on the couch. Amelia is now ready at 5am, or 6 if we’re fortunate, to kick off her day.

It’s then that I feel her presence in the doorway to our room. She hovers there uncertainly, watching for movement, for signs of waking life.

I resist for a minute but I can’t help but lift my weary arm to offer her a tiny wave – words cannot travel the distance to my beautiful deaf child but one gesture shows her the way is clear to approach.

And with this green light Amelia runs to my bedside, full pelt, to grasp my hand and throw her body across mine.

It’s easily my favourite time of day, this part when our bodies are so close and her face turns to my cheek to plant big, passionate smooches there. And if I’m very lucky, she might reach up to softly stroke my face with her hand.

Her sometimes-rough hands become gentle in the morning light.

I am barely awake but the smell of her, the feel of her, is everything to me in that moment.

Amelia is up and now so am I, and no matter what the hour, no matter how sleepless the night, and no matter how many ‘things’ I’ll be carting around for the rest of the day, in this perfect moment my heart is filled only with happiness.

[I wrote this piece yesterday after a wonderful day spent in a Gunnas Writing Masterclass with the incomparable Catherine Deveny. The task was to send her a piece written between 10am and 10pm on the day. ‘But how? I’m going straight out to dinner and to see a show. I won’t be able to do it’. But no excuses would do. So I texted my husband the simple words…’Bring your laptop’. Later, parked in our car on a city street, I sat with the laptop on my knee and frantically tapped out this piece from the notes I’d scrawled in the masterclass. I had to do it – would never forgive myself if I didn’t – and so I did. I emailed it to Catherine, typos and all, and felt a great sense of satisfaction. The feedback and support from Catherine the next day was absolutely thrilling and so that mad writing session in my car felt even more worthwhile. It was such a great experience that I’m sure any aspiring writer would enjoy. Plus, Catherine wears amazing shoes with little musical notes engraved on the soles. So there’s that too.]

Ogres are like onions

Don’t mention parfait.

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

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

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

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

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

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

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

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

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

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

What could be more important than this?

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

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

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

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

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

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

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

No caption required.

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

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

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

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

The ice girl cometh

Warrior girl with water weapon

RECENTLY I found myself caught up in the wacky Ice Bucket Challenge sweeping Facebook feeds the world over. You might have seen one of these videos, where some poor, charitable soul stands nervously in a suburban backyard, waiting to be drenched with ice-filled water by delighted relatives enjoying their role a little too much.

Yep, that was me a few weeks ago. I was ‘tagged’ by my good friend CM to take up the challenge and once you’re ‘it’ there’s no such thing as ‘keepings off’ or ‘barley’.

So I stumped up and took my freezing cold medicine. For the good of the cause (motor neurone disease) and because I didn’t want to be called a wuss. I know, I’m not about to win a humanitarian of the year award.

But I do know someone who would have taken that ice bucket challenge by the horns and never let go. She would have relished it, and asked for more and more buckets until she’d beaten the Guinness Book of Records benchmark that might apply to a weird new age phenomenon such as this.

Who is it, you ask? Some hard-skinned ranger type who feels no pain and crushes all opponents in their wake? No, I’m talking about my five-year-old daughter Amelia, who is on the autistic spectrum and is wildly PASSIONATE about the sensation of very cold water on her skin.

I first noticed this strange sensory trait when she was about two and a half. One afternoon during the winter time, I saw her outside with a bucket of cold water she’d filled when I wasn’t looking. She proceeded to fill a smaller bowl with the water and pour it repeatedly over her head and quivering body. It was quivering with the cold no doubt, but also with powerful exhilaration.

For a moment I watched at the window, transfixed by the scene. Amelia’s beautiful round face was a study in elation, in euphoria. She appeared totally unbothered by the frigid temperature of the water. Instead, it was a delight to her and she welcomed it without fear or hesitation.

I was torn between wanting to leave her be for a while longer to enjoy being at one with the water, and the mothering instincts which compelled me to gate-crash this spontaneous garden party and throw a big towel over it. And her.

Other times I found her in our backyard with no clothes on, holding a gushing hose in the air so the icy plumes of water would fall straight down onto her head. Amelia treated the water with reverence, as something deeply special to her that only she could understand.

It’s true that my girl had never enjoyed warm water, especially in the shower. My attempts to add just a little more heat to the stream from above were always instantly detected. I couldn’t get past my child’s incredible sensitivity to the temperature and how it felt on her skin.

For quite a long time this need in her worried me a lot. Every time she’d ask for cold shower water as she sat in a shallow (warm) bath below, we’d wrestle with the taps and I’d think ‘I can’t let her sit in freezing cold water, can I?’ Old sayings about catching one’s death hovered close to my ear and increased my anxiety.

But Amelia doesn’t feel cold water the same way most people do. You only need to see her at the beach out of season when the water is still too chilly for mere mortals to enter; there she is – my little Tommy Hafey child – striding out determinedly, into the deep folds of all that delicious cold.

Spot

the

difference

I think for Amelia, the love of cold water is a combination of the intense feelings she gets from the pressure of the spray and the glacial temperature itself. These elements create a sort of rapturous response in the nerve centre of her body – I can see it in the excited flapping of her arms, the full-body shuddering that makes her squeal likes she’s on the joyride of her life.

After years of watching her relationship with cold water unfold, I now understand that it isn’t bad for her the way it might be for a different child who could not tolerate the icy temperature at all. Or an adult forced to endure a freezing bucket of water tipped over their heads for the sake of charity.

Embracing the challenge of cold, cold water

Now most nights, after Amelia has agreed to conduct her clean-up in a ‘nice’ warm bath, I give her five minutes (give or take) under the arctic torrent from the shower overhead. I peak behind the curtain to steal a glimpse or two of her big, round face, held up in exaltation to the pure thrill of it.

Bath times have been harrowing for us for many years. The allowance for icy, cold water when my daughter desires it has made things a lot better. Sometimes it even calms her down, as though the (welcome) shock to her body from the shower helps quieten those other feelings that can send her out of control.

And in relaxing the house ‘rules’ around water I can also see a little glint of thanks in Amelia’s dark eyes. ‘Mum is finally working me out’, it says. She is giving me freedom to be myself. To take a million ice bucket challenges if I want to.

But it’s not a challenge for her at all, it’s simply a way of being, a way of life. Trust a child to be so deliberately fearless.

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.

Good vibrations

Great composer, terrible movie.

Parenting and privacy are about as compatible as warring armies facing off in the heat of battle. Or Russell Crowe ‘singing’ show tunes in the film adaptation of Les Misérables.

Doors blissfully closed, toilet breaks taken in peace, showers enjoyed in quiet solitude: all these taken-for-granted ‘you’ spaces are rapidly and irrevocably invaded by ‘them’.

The boundaryless child, whose chief aim as they grow and increase their gross and fine motor abilities is to keep you in full view and on tap at all times, cares nothing for the selfishness of time spent alone.

This process took a while to take root in our home. For her first few years of life, our daughter Amelia was very slow to crawl, to walk, to really care that much where her parents were at any given time.

She was born deaf and no-one knew this until she was two, so I guess Amelia was learning to live inside an impenetrable private space of her own. Our words could not puncture it until her hearing aids switched her on to the sounds of life and her parents reaching in to grab her.

Since this momentous time, our girl has taken great strides to bridge the gaps that existed between us. It’s hard to recollect a time before she was forever at my shoulder, by my side or in my bathroom – my constant, wonderful, infuriating companion.

Sometimes I long to just shut the door behind me as I hastily jump into the shower and not hear Amelia calling me, crashing the door open and dragging all of her ‘stuff’ in to camp out on the floor and harass me with endless questions. So many questions.

But at the same time, those questions are a daily gift, a reminder, of just how far she has come in learning to speak, to need and tell us her mind and her heart. To find her way out from dark rooms shaped by deafness and autism.

So the other day when Amelia came to me once more, in our tiny bathroom not fit for swinging cats or wide towels, and asked to join her Mum in the shower, I could hardly deny her.

I nodded my head and in a flash she ripped out her hearing aids and placed them buzzing on the vanity before piling in with me behind the shower curtain with its brightly coloured spots.

Occasionally she likes to sit at the opposite end of the bath to me, letting the water fall onto our legs as we play boats or some silly game. We like to hold our hands under the warm stream from the tap above and enjoy the sensation.

This day, Amelia came and sat in my lap – so close – and lay her small back against my front.

It is truthfully the most happy you will ever find me, with my daughter who dislikes being held, volunteering to lie on me and enjoying the pressure of our skin-on-skin.

She held my hands and pressed her fingers into my face and my legs. And then I started singing, this crazy, high pitched, mock-soprano warbling I have a tendency to unleash in the shower (and all around the house).

I sent a big high note out into the room and the vibration in my chest went through Amelia’s back and she paused for a moment before suddenly responding in kind. A big, atonal set of notes flew from her mouth and into the air, soaring high to meet mine as they fell.

And we didn’t stop for anything. My beautiful girl, who without aids cannot hear more than fragments of the sound produced from my mouth, was feeling it now through my body and we were locked in a double act for the ages.

My singing was echoed in hers, as was my joy reflected in her beaming expression. Not until my husband was roused from another part of the house and came to see what his mad women of the shower were up to did we break from our performance.

I may not have any privacy to speak of and there are no doors that stay closed for long in my house, but happily other obstacles continue to shift and open just a little. Just enough to let me hold my sweetheart for five full minutes and reach her through my body and the power of song.