Voices that matter

Reflections and Poetry

POEM

Years ago, there was a boy,

Full of life and bringing joy.

But bit by bit, like slipping sand,

He vanished from our outstretched hand.

First, his voice, then eyes went cold,

A shadow of the boy we’d hold.

We’d call his name, he wouldn’t hear,

Each passing day, he’d disappear.

Like puzzle pieces lost in air,

Bit by bit, he wasn’t there.

His essence faded, soft and slow,

What took him? We might never know.

He drifted far, beyond our reach,

A silent ghost on empty beach.

We tried to catch him, hold him near,

But something dark pulled at his ear.

And then one day, he slowly came

But in his eyes there was no name.

An empty shell, a hollow skin,

A stranger now where he had been.

We did not know him anymore,

And he forgot what came before.

He stared right through us, blank and bare,

As if our love was never there.

And now he laughs, but not the same,

A hollow sound, without a name.

It chills the air, an empty ring,

Not the joy for whom we’d sing.

That joy he had, it’s long been drowned,

In something dark, where he’s been bound.

His laugh now claws from somewhere deep,

A thing that wakes us from our sleep.

We all died with him, piece by piece,

In silent grief that would not cease.

And yet we walk, and yet we breathe,

Alive, but lost our smile beneath

The years have passed, but something stays,

A haunting echo, endless maze.

Of who he was, and what was lost,

We count our breaths and bear the cost

Poem by parent, Paulina Sheridan

Paulina Sheridan

Parent · Beyond Disintegration Community

OCTOPUS

He drew an octopus at two, eight arms reaching out for everything, crayon pressed with such conviction, like he already knew the world was worth grabbing hold of.

Octopus.

The last word that was ever mine to keep.

The bath was running. Steam against the tiles. He looked up at me the way children do when they have just discovered that a word belongs to them, and he said it.

Octopus.

Clear as anything. Proud as anything. Water up to his waist and the whole world ahead of him.

I remember it like it was yesterday. I will remember it like it was yesterday for the rest of my life.

And every night, when the house finally quiets, when his brother is sleeping and the pacing has stilled and I am alone with myself for the first time since dawn, I press play.

The steam. The tiles. His face turned up to mine.

Octopus.

And my heart breaks.

Quietly, so no one hears. The way it has learned to. Completely, and without fuss, every single night, as if it were the first time.

I replay it. The shape of it in his mouth, the way his eyes lit up before the lights went somewhere I cannot follow. Somewhere I have knocked on every door and found no handle.

Now strangers steal their glances on the pavement, in the supermarket aisle. Quizzical is too kind a word for what I see on their faces when he paces, when he screams, when the world inside him comes out sideways.

I want to say:

He said octopus in the bath.

He laughed like it was easy.

He was coming, and then he was gone,

and I am still standing here with my arms out.

The mornings break before they should. Crack of dawn, and already we begin, the circuit of the kitchen, the agitation like weather, groundhog day pressed flat against itself. Over and over. The same sky. The same helplessness dressed up as routine.

His brother watches. Learns a silence no child should have to learn. Carries something heavy in small hands.

I see it and I cannot fix that either.

Two boys. Both of them asking things of me I do not know how to answer.

But then a window opens.

He turns, and for a moment there is laughter, pure and unreasonable and so achingly brief it almost breaks me more than everything else combined.

There you are.

I want to hold the moment like water.

It runs through anyway.

I do not know if you are in pain.

This is the question that finds me at 3am, that sits across from me at every meal, that follows me into every room I thought was mine alone.

I hope the world inside you is kinder than it looks from out here. I hope the pacing is not suffering but something else, a language I have not yet earned.

I am still learning.

I will never stop.

You do not engage the way they said you would. The stare goes somewhere black and far. But I have learned to look for you in other places, in the way you reach for certain textures, in the half smile that arrives without announcement, in the way you still, sometimes, let me hold you.

I am there.

I am always there.

I would give every word I own to hear you say one back.

I would empty every credential, every study, every paper, every careful clinical sentence I have ever spoken, pour it all out on the floor for just a moment of:

Dada.

But since I cannot give you language, I will lend you mine.

Every room. Every fight. Every form, every tribunal, every door that needs breaking down.

I will speak until I have no voice left, and then I will write it, and when I cannot write I will stand there anyway.

Your father.

Your doctor.

Your witness.

Your love.

For all of it.

For all of eternity.

For you.

The world may have taken the rest.

But I still have octopus.

Dr Chris Winiger

Parent · Beyond Disintegration Community

REFLECTION

The Lasts

There were so many lasts we did not recognise at the time. The last kiss, the last time he told me he loved me, the last joke we shared, the last nursery rhyme he sang, the last time he clapped, the last time he played with his brother, the last time he understood me, the last drawing, the last wave, the last 'goodbye mama'.

What it is to witness so many lasts while a child still lives, I will never understand. So many ordinary moments passed without warning, quietly becoming memories before we even knew they were ending.

Now, I see that child only in my dreams. I hold on to hope that one day, somehow, I will see him again in my waking world too.

Anonymous

Parent · Beyond Disintegration Community