Downright Joy

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

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Photo by Trym Nilsen on Unsplash

Today I cleaned the blinds, slat by slat.
Wiping away layers of dust, marked with fingerprints that have gathered stealthily.
Hidden until they were not.

I noticed them first thing.
Shafts of early morning sunlight exposing each tiny particle.
Each mark, each imprint.
Light has a tendency to do that; expose things.

I noticed one of the blinds was broken.
Not functioning as it should, no matter how much I tugged or pushed or pulled.
How long has this blind been like this?
I’m not sure if anyone else has noticed, perhaps just me.

Anyway, I think I’ve got away with it.
A broken blind can wait, there are other jobs ahead in the queue.
It’s not something I am able to fix, I don’t have the resources, time or skill.
But at least cleaning it today helps take my mind off the fact that I have been unable to fix you.

You and I are good at waiting; long overdue appointments they said you badly need.
Another day, another week or month, even year; I lose track as the dust continues to settle.
For the present, I’ll find something else in our lives to polish, clean or mend.
As it remains one of the greatest of honours in my life to do everything I can for you.

I began by naming this poem “Broken” but then I remembered: I’ve pitched my tent in the land of hope.

So instead I’ve called it


#Downsyndrome #Acts2:26 #Caring #Carersweek #parentcarer


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The Garden

Image by BARBARA808 from Pixabay

I settle back in my chair. By the window, looking out on to The Garden.

The chair I have just bought so I could look out at the garden I have just planted. 

Aching legs, tired arms, calloused hands.

Weary. Content. Exhausted.

Her garden. I mean it’s mine, ours. But I have planted it for her.

Grasses that will sway, Lavender that will seduce. French, naturally.

Hustling Hostas; each one thinking they are the star of the show. 

They do not realise how much they need each other

A copper windmill, jewelled with stones of purple and red and blue. Ponderously regal. Disdainfully, it shares the stage with a water feature….a resin hand-pump masquerading as cast iron, surrounded by a family of acrylic white ducks. Yet it might as well be Royalty. To her it is a thing of great beauty. Its diminutive trickle of water elicits sounds of great joy from her. She is non verbal. My daughter.

So I love it too

Oh and there are butter yellow Calla Lilies! Still beaming at dusk; positively shouting at dawn.

Like her.

There are spaces yet to be planted. Gaps. Bare patches. Problem areas. This garden is incomplete. I hope it is never finished, for where would the joy be in that? 

We will do things differently. Experiment here and there. Get things wrong. Get things right. It will be hard work, often very lonely, but it will also be rewarding. Not in Gold medals or Silver Gilts, as we are unlikely to ever meet the criteria for those; but none the less, so very rewarding. There is no competition.

And though we still live on a busy road, in a busy town, where noise, traffic and so much more disturbs our peace, where there is so much about our lives we cannot change, though we would like to…. and though passers by and those who pass us by, may have no idea even of our existence; we will be enjoying the garden.

For it is a safe place for her. 

And me.