Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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The Ballroom

Photo by Fidel Fernando on Unsplash

Spinning, twirling, twisting, turning.

She scans the kitchen, looking for the source of this audible joy; this beat, this rhythm.

Melodic notes of life amplified by her hearing aid; she asks for neither but appreciates both.

This is her way of life, of living.

She sits though never still, she dances on.

Side to side from her hips, from her waist.

Up, down, still seated, bouncing; looking up at an imaginary glitterball, laughing, smiling.

Often smiling.

Back on her splinted feet.

Heavy footed, as the lightest of feathers appear to fall around her.

She dances like no one is watching.

This is her way of life, of living.

But even if they are watching, especially if they are watching, she dances anyway.

She needs no invitation or permission to be in this glitterball moment; though society has deemed she does.

Her extra chromosome already disqualifying her from automatic access to the Ballroom.

Barriers to entry erected years ago, where Marshalls gather to scrutinise tickets; discouraging any without from finding a way in.

They see only invalidity; stamping their own heavy feet on the feathers and dreams of another.

They do not see a way of life for her, only a life not worth living and I surmise they too, may never have been inside the Ballroom.

At the wall, I turn off the source of this momentary pleasure, as is my prerogative, for I must get on with my plans for the day.

As the kettle boils so the dancing stops, and with it, at least for now, the joy.

For others the dancing never began.

Cut short at the box office.

Ticket deemed invalid then discarded.

Lost.

No one looks for what they lost outside the box office; rather, they walk away.

Knowing, perhaps, they lost something yet unable to truly comprehend its worth; disorientated, they leave it behind.

I wonder, were they trampled on too, before they could discover their trove? 

Kindness surely did not remove its boots as it went in for the kill.

This is now their way of life, of living.

Lost glitterball moments in the kitchen; the Ballroom.

#Downsyndrome

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4 Comments

Seasons

What’s that phrase…. the one when a writer gets stuck for words? You know, when they can’t put pen to paper or find the words that, at other times, flow so readily….that. No, I can’t remember either.

Whatever the expression is I’ve got it. Had it. Still have it. I haven’t been able to put my thoughts down in print for a while now. Apart from one short article for the Down Syndrome Research Foundation, I’ve drawn a blank. Is that the word? No, no, but it’s something like that. Begins with a ‘b’, I think. 

I last properly blogged in July. By a lake. In a spacious and peaceful place.

A pause

A pause in a year that has drained me of words. And of so much more. 

Oh, this isn’t a lament about how hard life has been in a pandemic. Truth is, I don’t have the words for that particular story. And, even if I did, I know there are so many others who could tell their own difficult story; families like mine, who’ve had their vital support networks pulled, whose tired faces and weary, worn out expressions say it all; dreading the prospect of schools ever being closed again should the need arise. Teachers who (for me) have been the unsung heroes of 2020, continually being asked to go above & beyond what is expected of the rest of us and yet often criticised from all sides. I haven’t even mentioned all the other frontline key workers. People who haven’t spent months at home baking cakes, crafting, doing DIY or bingeing on box sets. And I’m not having a pop at anyone who did those things, but, you know, honestly? Jealousy is something I’ve battled with this year!

No. They don’t need to read my story and neither does anyone else. I’ll keep my thoughts about the last eight months to myself, at least for the time being.

For now, I remain lost for words. Unable to adequately communicate my deepest or even shallowest of thoughts.

Like Hazel.

Hazel is my daughter. Hazel has Down’s syndrome. Hazel is the clearest communicator I know but her language is an unspoken one.

So, like Hazel, I think I’ll laugh out loud at whatever I find amusing, whenever I find it. 

Like Hazel, I think I’ll stare intently at shiny things, bright things, beautiful spinning shimmery things.

I’ll stare at pictures I like, photographs I’ve taken, faces I see. I’ll smile at those. Like Hazel. She smiles at people. Often. Even if they don’t smile back (but they usually do). 

Like Hazel, I think I’ll run my hands over surfaces or textures that I like; the pebbles we collected in a brightly coloured bucket on a Devon beach, one July day. Seaside stones that now form a kind of miniature sculpture on my patio. A shadow of their former glory as the surroundings have changed; but I still like them. They make me smile. They cause me to remember a very happy day spent by the sea after many not quite so happy days in lockdown.

Hazel smiles often. I think she remembers often too. More than most people, perhaps. I’m convinced she regularly deposits joy for herself in her memory bank and withdraws it on a daily basis.

Like Hazel, I will explore my surroundings. I shall reach out and feel silver sage leaves between my fingers or inhale the scent of fresh mint picked from my little herb garden. I say garden, it’s no more than a pot really, but as it exists in my garden that alone brings me joy.

Still, no words needed.

Hazel is nearby. She has a stick in her hand and fallen leaf litter at her feet. She will always choose the opposite textures to me. Sand over stones. Sticks over sage. And leaves. Leaves are her favourite. Especially if they are falling around her. I know she loves them. Once upon a time she would say so.

Leeeeeaaves

As I hold them above her head and let them fall.

Her face lights up, arms stiffen and hands wave.

Leeeeeaaaves

Now, there are no words. She has lost them. Autism, or something, has stolen them. A gradual lockdown, of sorts, in a part of her brain. Not of her making or choosing. It came without warning. No one can tell me if or when the restrictions will be lifted. It’s hard to find the words to describe how I feel about this too. There are some losses, some experiences, that cannot be put into words because words are not always what a grieving soul needs to hear. 

Hazel accepts what is with a peacefulness that passes all understanding.  She is truly a mystery. Marvellously so.

She still loves leaves and the leaves still fall as they’ve always done. Hazel is thrilled by that, just as she’s always been.

If Hazel feels any sense of loss, she does not show it.

Somehow, the words are not needed.  At least not for now and not in these moments. For now, I will take a leaf out of her book. Literally. I’ll hold it the way she holds it. I’ll feel it, turning it over and over in my hand. I’ll marvel at it. I’ll shout with glee as the leaves fall around me. 

Messy and colourful; swirling noisily around me.

Like Hazel does. Like Hazel is.

She was born in the Autumn. It was messy back then too. Hard. The Great British Bake Off was on the television screen in the NICU restroom, in only its second season. Strange, the things you remember. And I remember there were lots of leaves. A carpet of them right outside the hospital entrance. Such a beautiful swirling mess.

Seasons

Like Hazel does, I will try to live in the moment. Not for it, but in it. Not worrying about tomorrow, for tomorrow has enough worries of its own. 

I will not try to find the words to explain to anyone how life is or has been of late. There aren’t any. 

There are just seasons

Waste your time, but do it joyfully. You are here once. Wasting time is a sacred activity.Gilo