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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A Month of Sundays

Image by Christiane from Pixabay

Today is Sunday.

You noticed.

You noticed a patch of sunlight that fell out of nowhere and streams across the kitchen floor. Down on your knees, you try to hold it in your outstretched fingers. You feel its warmth. Still, it fades, but still you noticed. Do you wonder, where it has gone? 

You noticed the ornamental grass billowing softly. With the lightest of touches your outstretched hand felt its gentle caress. ‘May green‘ plumes that sway and bow with the wind. I marvel at how they do not break or snap under pressure from the next, unpredictable gust, no matter how far they bend. I am jealous of their resilience. I planted this for you last summer, it is there by design, as are you. And you have noticed.

You noticed the coarseness of the brickwork. At the side of the house; a passageway the rest of us routinely hurry on through. There is nothing to marvel at here; no plants, no colour, not even a blade of grass. Just bricks that form a wall, against which we discard our rubbish. You stand there, outstretched arms guide your faltering, supported steps until you find your spot. 

The same spot as you found yesterday and have returned to today. Sunday.

You have noticed something there the rest of us cannot see. I am looking. Briefly, I look but I cannot see. Yet you can. Even with the poorest of vision, through dense and clumsy lenses, your clouded view of this world is still clearer than mine.

We cannot see what you see.

We cannot see because we cannot feel. The way you do. Arms, fingers, toes all outstretched and full of questions. Taking untold risks for the greatest of discoveries. Knowing so very little, you learn so very much.

What if you never climb the heights of Everest, or study Botany to gain a degree? Your experiences, your learning, is not confined to these worthy pursuits. I have this joyous, delightful feeling that you have noticed more on a Sunday in May than all the world’s explorers, scientists, adventurers, academics and me.

The world of you is noticed.

This glorious, marvellous, painful and dangerous world that has within its lifetime, a whole Month of Sundays, likely more.

And they are noticed by me.

#downsyndrome #downssyndrome

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Pass the tissues

Photo by Daniël Maas on Unsplash

Am I allowed to think about a world without you in it?

Dare I imagine what that would be like? 

I think I’m supposed to say that I can’t, I shouldn’t

But I can, I do, I lived it once; my life, without you. 

A life where your laughter would not erupt out of nowhere.

Chasing me around corners to share a joke I do not understand. 

Catching me off guard in a moment of melancholy. 

A life of contagion, where your joy could not be quarantined.

Come to think of it, you’ve never once tried to stifle a sneeze. 

I think I would hate it if you do.

So pass the tissues please,

I know I’d be sad with a life without you. 

“Our joy is not confined to ourselves but radiates out to all.” Center for Action & Contemplation



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Photo by Marek Studzinski on Unsplash

I love her.

With every ounce of my being for every fibre of hers, I love her.

When I speak her beautiful name, Hazel; I love her.

When I think of her radiant face, her almond shaped eyes, I love her.

A violation of social norms; my love for her – my love.

How did I once believe I could not express or even feel this kind of love for her?

Who convinced me to ever doubt its existence?

Robbing me of those early precious moments.

Stolen time squandered on falsehood and fear; on Down’s syndrome, but not on her.

We were uninsured against such a heinous crime.

I love her precious, peculiar ways.

Pursuing unmarked pathways, she searches out joy.

Holding in her hands, the only navigation system she knows or needs: this moment.

Along these mystic trails I follow her, entering worlds of rituals and discovery.

A journey begun in hospital corridors that signposted a different way, on clinic walls painted with despair.

Uncertainty has become constant in our lives.

Walking hand in hand with each other and with faith, it is the only certain thing we possess.

Apart from my love for her, my love.

Under cover of prevailing gloom, we graffitied those hospital corridors as we left.

Tagged them with love as markers of hope, we committed our heinous crime.

#WDSD23 #DownSyndrome #Love #Hope #Humanity

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Monday’s Child

Photo by Daniel Watson on Unsplash

Monday’s child went to school,

As she does, as a rule.

She was quieter than of late

The teacher said.

I’ll keep an eye, said I

Tuesday’s child stayed at home, unwell.

As she often is: not well.

We passed the time

Singing songs in rhyme.

Tube feeding, tea drinking, clock watching our day away.

Wednesday’s child remained off school.

It’s never just one day, as a rule.

We built a den,

And dreamed of when

She would be well, not ill again.

Thursday’s child went back to school

Was this the right call or was I a fool?

It mattered not,

The door was shut.

Turned away, for no teacher was well enough to teach her that day.

Friday’s child is in the lap of the gods!

Her parents and teachers are in no way at odds.

But days lost mount; by a quarter, I counted up.

As Educators told by those in power to pipe down, get on, shut up.

In schools, in SEND, and in our home, a week is a mountain to climb and a very long time

Saturday’s child and Sunday’s child

Remain as before, weekend care needs refuse to yield.

But hope has space to grow; assisting with next week’s worries to beat.

Like will Thursday’s child be on repeat?

I’ll keep an eye, say I.

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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.


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.


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Photo by Gabriel Valdez on Unsplash

Who’s missing from your table?

Who’s not sitting or standing on your floor?

Look around and ask yourself 

Who have we never invited in

To even set foot in our door?

Who’s missing from your plans and dreams?

Who’s never expected to play a part?

Look around and ask yourself 

Who else could be here, changing our culture from within,

Changing our heart?

Who’s missing from your programmes?

Who’s not being given any consideration?

Look around and ask yourself 

Who else would like to do as we do?

They are not some kind of aberration.

Who’s missing? 

I am, though I am not missed.

Who’s missing out?

We all are.




                1. the action or state of including or of being included within a group or structure.”they have been selected for inclusion in the scheme”

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Bucket List

Photo by Phil Hearing on Unsplash

What’s the correct name for it? The sparkle you get on the surface of the sea especially in summer…… as sunlight catches the ripples, usually on a calm day. A gently moving carpet of glittering diamonds, shimmering and shimmying as far as the eye can see. 

I’m not sure there is a name for it. It’s far too beautiful a sight to be contained by a single word. It takes my breath away every time I see it, which is not that often as I do not live by the sea.

I wonder if I would tire of this sight if I did? It’s a sight I long to see every year. Most years I’ve been blessed enough to see it. It makes me smile. Every single time

I don’t have a Bucket List. You know the sort of thing, a list of places I want to visit in my lifetime, and or experiences I want to have at least once before I die. A cruise perhaps, or a trip to the Northern Lights. I’ve never fancied jumping out of a plane but I wouldn’t say no to a Trip on The Orient Express. Or Vienna. I’d quite like to visit Vienna. But I don’t have a Bucket List. I don’t really have a list at all.

Bucket lists are hard to fulfill when you are the main carer for someone you love. A list filled with experiences that may never happen simply because to make them happen would require the movement of both heaven and earth for most carers and the one(s) they care for. I don’t think many would deny that being an unpaid carer involves a level of sacrifice and loneliness that most people will never have to give or experience…unless they become one themselves, that is. Not only that, but the name Bucket List doesn’t sit well with me, it feels sort of depressing; though of course I know that one day I will ‘kick the bucket’ like every other mortal on the planet. 

Personally speaking, having a Bucket List is a pressure I can happily live without.  Don’t get me wrong, I would love (I think) every one of those experiences I mentioned and may have dreamt about as well as more, should they ever come my way. For now, and for the foreseeable future (which is a strange thing to say I always think, because the future is not really foreseeable for any of us) I am content to enjoy those experiences that often come with no name but that make me smile, make me catch my breath. And there are some I don’t enjoy at all that are also to be collected, valued even.

Some happen to me occasionally, like visits to the seaside. Others daily, hourly. Often.

Like the moment my daughter, who has Down’s syndrome, laughs out loud at who knows what. It’s a mystery but it’s very funny.

Or the moment she is given shoes that don’t rub her little feet red raw anymore, along with splints that fit correctly. She marches off, instead of hobbling. Her legs still tire, and when they do she beams as she sits back into her wheelchair. She cannot tell me her joy or her pain in words as she has none. These moments sparkle as much as the sea sparkles in the height of summer.

Or the moment her sister instinctively helps her off with her coat or shares an armchair with her. Though she shares more than an armchair; she shares her time, her attention, her love. Getting back in return seemingly nothing sometimes, but in reality everything and more. What is the name for that? Some say siblings of people with Down’s syndrome suffer. They give it a name, even though they have never sat in the same armchair, or taken off her coat. How dare they so falsely name an experience of which they know so little.

Sometimes it is the moment just after another procedure, operation or clinic appointment. Heart heavy with loving her through yet more trauma. Hers and mine. Tear stained walks along hospital corridors, telling myself and her “It’s over now, it’s ok, we’re going home”. Knowing that it’s only over until the next time. Knowing that it doesn’t really get easier. 

Even the kindness of the medics can be painful and I have been known to crumple.

These moments are harsh, but they are also profoundly beautiful. The love swells, mingled with pain, making it ever more precious.

Oh but I do have a Bucket and I am very fond of it. It’s not shiny, it has holes and probably needs a good clean. Yet it is filled with experiences I would never have imagined possible before I was gifted the responsibility and privilege of caring for this disabled child and her sister. 

Many of these experiences have no name, some are incredibly painful, others joyful beyond measure; and I treasure them all.

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My non verbal daughter has no words, only sounds.

Sacred sounds, echoing throughout the kitchen temple; our church.

Where sacrifice and worship and silent gasping prayers rise, mingled with coffee and toast and sudocrem.

There are crumbs in the butter again.

Mmmmm is one of those sounds,

And that is the sound of my name.

Immanuel. This is God with us; with me.




Image by M W from Pixabay

You love a birthday, you.

No matter whose it is. 

Candles lit, you know what follows;

A song, golden flickering flames that vanish on a

cake that others will swallow.

You love a celebration, you.

No matter what the festival.

Be it Christmas, Easter, or any other occasion,

you were born to share in another’s joy

Amplified by your elation.

You do not ask for anything, you.

Nor do you come to me with a list,

Though I would fulfill it in a heartbeat if you had.

You desire not to possess the latest fashion,

So why does this still make me sad?

You do not know tomorrow is your birthday, you.

Anticipation comes at the moment you see

Not the presents, they cannot hold your attention.

But the cards, the candles, the faces that sing

Happy Birthday to You in joyous affirmation.

You won’t know it’s your birthday when I’m no longer here

to tell you the moment you open your eyes.

If you have not anticipated your special day then there can be no pain

Or disappointment when no cards arrive, nor the candles

 that I’d light for you again and again.

You don’t know how much you are loved, you.

Or how my fears simply cannot come to pass.

You are surrounded by those who love you as their own.

You were never mine to keep, your gift is to so many

And I know you will never spend your birthday alone.

Happy Birthday Hazel x