The kite runner

12794847_10154062443205127_6526109824158844762_oSHE ONLY let go of his hand for a moment, all the better to chase the colourful kite sailing above their heads. Her arms are raised, as though she can touch the clouds or pull the kite to her with an invisible string clasped in her hands.

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

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

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

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

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

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

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

 

 

The greatest show on earth

Trapeze girl

Super trapeze girl

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

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

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

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

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

I forget his name but not his kindness.

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

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

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

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

It really wasn’t the greatest show on earth…

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

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

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

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

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

Soil searching

Up the garden path

Up the garden path, with rose petals

I have something shocking to report.

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

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

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

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

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

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

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

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

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

My partner in garden crime

My little partner in garden crime

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

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

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

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

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

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

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

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

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

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

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

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

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

Blooming for the first time

Blooming for the first time

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

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

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

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

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

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

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

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

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

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

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

Never say Neverland

The boy who wouldn't grow up

The boy who wouldn’t grow up

QUESTIONS, always with the questions.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amelia in full flight

Amelia in full flight

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

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

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

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

See, she really can fly.

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

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

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

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

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

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

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

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

* This statement is caffeine and sleep dependant

Channelling Casablanca

The beginning of a beautiful friendship.

Amelia & E: the beginning of a beautiful friendship

I took this photo the other day as Amelia and her younger companion ‘E’ left another session of their social skills group for kids with ASD. They skipped ahead and gripped hands as we made our way to our cars and the remains of the day.

Behind them, E’s Mum and I wrenched our phones hastily from respective pockets to try and capture the moment in time, freeze it in space and hold it fast in our memories.

‘Did you get it? I think I did, I think I got a good one’. You bet I did.

I hadn’t realised that our little ones might think of each other as ‘friends’; it seems like such a foreign concept to apply to children who often find the ins and outs of socialising as remote and mysterious as the moon.

But there are lovely hints of attachment occurring between them; small seedlings of care and thought peeping up from below ground, searching for light and air.

Like when we arrived at the session, I saw E’s Mum holding a Peppa Pig toy in her hand and I said, ‘Oh, is that E’s toy? How cute’.

‘Yes’, she replied, ‘He brought especially it to show Amelia’. Her words and his sweet gesture made me smile, inside and out.

And though Amelia did not pay due homage to Peppa, chosen with only her in mind, she was genuinely excited to see E and content to linger over the fading moments of the afternoon carefully holding his hand.

Walking behind them in happy silence, I laced my own fingers inside my husband’s, our connection an echo of the intertwined children up ahead.

As usual my mind wandered to the movies, the scene reminiscent of Rick and Louis at the end of Casablanca. I found myself thinking, ‘If those two can begin a beautiful friendship, then why not Amelia and E?’

Why ever not?

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.

Piano palmistry

At the end of last year, my daughter Amelia graduated from her kindergarten class. As seems to be the custom these days, even for children so young, her school fashioned junior mortarboards out of black cardboard and printed special certificates to mark the occasion.

The mini graduands even had a small stage upon which to stand as they received their laminated diplomas.

The use of academic paraphernalia to honour pre-school achievements had seemed a little over the top to me.

That was until I saw Amelia and her friends take it in turns to leap from the stage-end with unrestrained glee.

I watched them clutching their flowers and personalised documents with raw delight. Check your cynicism at the door, woman, because it is not welcome here.

This group, which had become so close during the year, really seemed to cherish their final minutes together. They hugged each other tightly and we, the parents, held onto the sight of them gathered for the last time.

To cap off this momentous day, the school’s art teacher came to collect some children to be part of a special project.

The school had been chosen to decorate one of the small street pianos to appear in the Melbourne arts precinct over the summer as part of the ‘Play Me, I’m Yours’ community art installation.

Did we want Amelia to come and put her handprint on the piano in black paint? You bet your sweet Steinways we did.

The teacher led our girl into the art room where a small upright piano stood front and centre. It had been painted with bright, vertical stripes of red, blue, green, yellow and orange. To complete the design, little hand prints were gradually being placed across the surface of the instrument.

Amelia’s palm was dipped in paint and she knelt down under the keys to carefully press it onto a section of blue stripe. I looked in fear at that black hand and her clean, yellow dress, but the teacher was like a magician. Now you see a paint-spattered hand, now you don’t.

The generous teacher then mentioned something to us about where the piano would be located in January but we were too caught up in the events of the morning to commit it to memory. It was enough that Amelia, who had come so far in a year, would be moving on from kindergarten to the big leagues of school.

Leaving her mark in indelible black paint seemed like the most apt way to end things.

Almost a month later, Amelia’s Dad and I were walking near the back of Melbourne’s Arts Centre. We had tickets to see a famous (and as it turns out not very funny) British comedian, so we were killing time in one of our favourite parts of the city. Yeah, that Jimmy Carr is a must see for anyone with a love of finely-crafted one-liners about disabilities and kids with special needs.

As we rounded a bend on the terrace I saw it: the stripy piano with its distinctive hand prints made by the students of the Furlong Park School for Deaf Children.

I couldn’t help myself, I jumped into the air and exclaimed loudly, giving my husband a start. It was the unmistakable sound of happiness. Of joy.

Because I’d forgotten all about that piano and Amelia’s palm print so carefully planted there. But seeing it out in public, seeing people playing it for the free enjoyment of others, I felt an overwhelming sense of pride.

The piano was decorated as a gift to the community and finding it by accident on that warm, summer evening felt like a gift to us too. No-one needed to know the identity of the little artist who’d given her right hand print for the sake of art.

But we did. The secret was ours to share and we couldn’t stop smiling. Well, at least until the ‘comedy’ show started.