Downright Joy

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

Category Archives: Acceptance


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Sparkling

Photo by Noah Clark on Unsplash

As I write, the long summer school holidays are almost at an end.
Seven weeks in total; it was meant to be six, but Hazel’s unpredictable health issues meant the holidays started early for her.
This could so easily turn into a post about coping (or otherwise!) with a child with severe disabilities and complex care needs when routine takes a back seat and ‘what shall we do today and will we be able to do it?‘ assumes the driving position.
It could so easily become a post about me and my frustrations. But, honestly, where’s the joy in that? When I set out years ago writing this blog, about this Downright Joy, I guess I only had one idea of joy in mind. The joy Hazel brings to our lives. Many times, I’ve called her my joy giver. And she is. She still does. That hasn’t changed. Yet Hazel is also growing up. Her joy is still treasured by me but, much more so, it is needed by her.

This summer I’ve noticed something about her joy.
Her joy is greater, when it manifests.

Wider smiles, deeper belly laughs, fast and furious ribbon waving.

When it manifests.

It manifests when someone wants to share it with her. A new or familiar face who takes the time to smile at her, say her name, say hello, pick up a ribbon and wave it too. A face that isn’t busy getting the lunch on or sorting through the laundry or dealing with another medical appointment or or……..

The irony is, I suspect, that Hazel is knowing greater joy because she is knowing greater sadness.

How is it possible that a human can grow up and yet shrink at the same time?

The summer break from routine has shown me clearly that this is a thing. I think I first noticed it a couple of summers ago in fact. Familiar faces, teachers, TAs, bus driver, school bus assistant, fellow passengers, friends, even medical professionals we are regularly involved with, disappear off on much needed and well-deserved breaks. This, on top of much less time at school since the pandemic and school life that has never fully recovered.
July blends into August and regular activities break for a while. Life itself seems to take a welcome pause. We welcome it too. Our busy world relaxes a little. Yet Hazel’s world doesn’t only relax at these times, it shrinks. It becomes less than in many ways.
Whilst the rest of us have calendars to count down the days or plan and prepare for adventures, Hazel just wonders where did everyone go?
And with her generally contented daily disposition of taking life as it comes, creeps in a little sadness. Hardly noticeable at first, but over time her eyes begin to lose some of their sparkle.
Holidays away help of course. Changes of scene have always been good for Hazel, but I have to recognise they come with confusion and can contribute to her feelings of uncertainty or anxiety. It all adds up.

And here’s what I’m noticing more and more as Hazel gets older. It’s not routines she misses; however good they may be. It’s not even familiarity itself. It’s people who will share her joy, no matter whether there is an activity or none. People who have the time to spend with her, whether it’s brief moments or something longer. People she knows, and people she hasn’t even met.

It’s the volunteers she beams at who walk alongside her, helping her to safely ride a pony again at Riding for the Disabled. It’s the faces of those she knows and loves who welcome her when she visits her beloved farm. It’s her carers who chat away endlessly with her, making even the most mundane of caring tasks fun. It’s the circus performer who smiled at her and beckoned her into the ring to join in the end of show dancing from her wheelchair. It’s the unexpected (to her) visits from her older sisters and their husbands…the joy, oh the joy of being able to share her delight with them. Often, just being in the same room with them, wasting time, is enough to start up the joy slot machine, and it pays handsome dividends.
These are the kind of people that bring the sparkle back to her eyes and the smile to her face. School brings this too and I am thankful for the new term; but one day that will come to an end. What then?

Hazel doesn’t so much need busy programmes, or events to fill her days, though she will enjoy their benefits.
Hazel needs connections to make.
Hazel needs company to keep.
Hazel needs a community to belong to and to bless.
Hazel needs to be known and loved.
Hazel needs to share her joy.

This is perhaps my deepest longing and prayer for Hazel’s life; that she will daily be able to share her joy.

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


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Silent Disco

Photo by Bozhin Karaivanov on Unsplash

Who saw you today?

Not on the pages of an inclusive advert, or some clever marketing campaign.
Profits helped along by an investment of virtue signalling.
The ahhh factor leaves a sense of pride, of doing good.
Progress none the less, positive images welcomed by most, including me.
No criticism, no envy, there’s room for us all, and all of us are needed, ultimately.

Not on the pages of social media, as we scroll, pause and smile for a few brief moments to notice difference and give it a like.
Nor in the sound bites and platitudes of an inspirational news story or televised fundraising event.
Down’s syndrome mentioned to the masses in the same breath as your name.
As if your difference it isn’t obvious from your photo and therefore necessary to firmly and quickly affix.

In a digital age it seems to me that these are the places you are most definitely wanted.
Needed even.
Increasingly so.
I’ve wanted this too, and many I know who work tirelessly hard to bring this about, for reasons of good.
Yet, the varying motivations for wanting or needing this exposure seem, at times, to compete, and end up blocking you entirely from view.

Were you routinely seen today in the park, or the mainstream school or the cafes, restaurants or bars?
Or in the Church or the shopping centre, or the swimming pool?
How about the Pharmacy, or the Dentist’s waiting room, or when queuing for a bus?
Will you one day be seen at the Jobs fair, or the college open day; are these places even open to you?
Your kind of diversity seems to do best in a photo opportunity; contained within (Facebook) borders that have yet to be crossed into a new way of life that is good for us all.

Did anyone, aside from your teacher, see your Monday morning joy-face as you entered the classroom of your Special School today?
Or hear your laughter at the same point in the same song we sing together every day?
Did anyone see you fall silent last summer when your world shrank a little more and, for a few months, you rarely left the house?
Did they get to share in your delight as you danced in the living room for the hundredth time to Daydream Believer?
You danced like no one was watching: you’d do the same even if they were – a silent disco isn’t the place for you.

Are you needed by society? Definitely.
Are you wanted by society? Yes, but only to a degree.
I’ve noticed you are routinely missing from it, yet, it appears, you are not routinely missed.
Except by those precious humans in our lives who hear for themselves the music you play and collect the colours you bring; they make sure that you are never unseen.
And, except by me.

For the “foolish” things of God have proven to be wiser than human wisdom. And the “feeble” things of God have proven to be far more powerful than any human ability.

(1 Corinthians 1 v 25 The Passion Translation)


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Pocketful

Photo by Alexander Grey on Unsplash

We collected five on our way home from the hospital today.
Five!
Not two or three or four, (which would still be good) but five.
In February of all months, or Kale-monath in Old English, named after a cabbage, I have gleefully learnt.
A perfectly sensible name for this month, at least it is if you happen to live in England.

Five; all now safely stowed away in my coat pocket.
Snatched almost rudely, as if in short supply then shoved deep inside lest they be stolen away.
Now stashed amongst scrunched up tissues and the remnants of an autumn leaf I have not had the heart to throw away, both constant reminders of the season we’re in.
A pocketful of things I would not be without, when I am with her.
Free stuff.

Five in one walk is a record for us.
Our faces lowered as we battle the elements of a dark, bitter afternoon; February revels in its cruciferous status.
She laughs as her wheelchair jolts and bounces over once subterranean but now emerging tree roots.
I do not laugh; today I am weary of visiting hospitals and sitting through endless appointments, either in clinics or at home for this won’t take long and they’ll be as quick as they can.
I am cold and wet and her wheelchair is heavy and these roots are monstrous and, and…oh hello there…thank you, yes you too.

Our pockets are filled.
Hers with the joy of the journey home, the wind and the rain are her elements, mine bursting with the lightest of finds.
Five genuine smiles given to her by five strangers, as they hurried by on this dreariest of winter days, handing out free stuff worth ten times its weight in gold.
Five of the kindest, ordinary faces giving a moment to honour her, not to pity her (we don’t collect those), recognising then marvelling at the treasure she always carries.
And reminding me, all over again, of the utter privilege that is every day caring for her.

“A twinkle in the eye means joy in the heart, and good news makes you feel as fit as a fiddle….“

Proverbs 15 verse 30, The Message


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Procession

Photo by Rob Tarren Photography

I walked alongside you, guiding you down the aisle.

Ribbon Girl.

An honour I never dreamt I’d be given. Through a sea of Faces who, quite rightly, were looking at you, not me. An unconventional Bridesmaid, no floaty dress or flowers to hold. You would have thrown those away in seconds. Your entrance had an air of tumultuous serenity as you stomped your way to the front, heavy footed, row by row.

You did not know why you were there, but knowing why has never really mattered to you. You are so often content to just be in the moment; especially when those moments are surrounded by this much care, this much thought, this much love. You even paused in your ceremonial duties; stopping to observe an unfamiliar but friendly, smiley, beaming Face.

It’s a Tea Pot kind of face, not a Coffee Pot Face.

There are no long, drawn out frowns here today. This strangest of journeys is filled with Tea Pot Faces that beam achingly wide, from handle to spout. Tears, of course….but none sorrowful.

I tug at your sleeve, prompting you to take a few more steps. Bridesmaids are supposed to keep moving, not hold up the procession. You have not reached the end of the aisle yet, and there are more Faces to look into as you expertly wave your ribbons of ivory and green. Ribbon waving is a serious occupation, and you are well practised in this art.

You glance with some puzzlement into the Faces of those who know you well and the Faces of those who don’t. Faces of those who have heard all about you many times from those who love you dearly; notably on this occasion, the Bride and her Groom. They have honoured you amongst their friends without realising; in every conversation, every photo shared, every story of you that they have so fondly and often told. There is no advocacy superior to this.

These are Faces that do not display any expressions of prejudice they may once have worn, before they heard about you.

These are Tea Pot Faces, not Coffee Pot Faces.

Smiling at you, beaming at you. They do not frown at you with long, pitying glances or worse, stares. We’ve been in those processions too. Neither do they watch you from behind a camera lens, capturing this precious moment and missing it at the same time. They have been asked to enjoy the occasion without such distractions. You, of course, do not need to be asked.

These are Faces turned in readiness to welcome you.

It hasn’t always been this way. Scrutiny has followed you since before you were born, its motives not always for your best. I am glad when the cameras are put away, for only then can you truly be seen for who you really are.

You reached the end of the aisle. Your wheelchair waiting to give rest to your braced ankles and feet. Relieved of your duties, still you clutched your ribbons. You would need these later, at the Wedding Disco, where you would show the Faces how to wave them too, with much joy. You always have plentiful supply to go round for those willing to receive; ribbons and joy.

The Bride made her entrance and rightfully took upon herself the loving, welcoming gaze of all the beaming Faces. You had gone ahead and performed your responsibilities; preparing the crowd for her Magnificent Arrival.

I like to imagine you were simply returning the favour.

The tone, the welcome, the love, had long been established by those who truly know you, your sisters, their husbands, your entire family, your friends, their friends. You are so very loved. In life, in your life, my longing is that you will always be surrounded by these kinds of Faces. A Procession of Faces that stop you in your tracks and make you want to study them, spend time with them, showing them your ribbons and teaching them how to dance with you.

A Procession interspersed with the Faces who perhaps, like me, once used to only drink from a Pot of Coffee, and now much prefer a Pot of Tea.

#Downsyndrome


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Missed?

Photo by Pierre Bamin 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.

Inclusion is important but I prefer belonging:

noun

                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”

Belonging

noun

“a feeling of being happy or comfortable as part of a particular group and having a good relationship with the other members of the group because they welcome you and accept you”

#downsyndrome #complexcareneeds


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Cost of Loving

Photo by Pedro Kümmel on Unsplash

The barriers have been going up lately at an alarming rate. As we move into a new stage of life with my daughter who has Down’s syndrome, so her needs have increased whilst the help she needs is held back.

I’ve wondered at times if the joy I’ve written about here would follow us through the years, or would harsher new realities emerge to crush it? Am I a fraud, claiming Downright Joy when faced with increasing barriers surrounding care needs as well as a few more challenging behaviours? Then there are days of staring into the unknown of what if’s and how will we cope’s of her future? Those are bad days, where joy is elusive.

Authorities are increasingly, or so it seems, putting more and more hurdles in our way to jump over. Not just authorities, but every-day life sets out its barriers at the start of each day. Road blocks all around us, forcing us to divert, often at the last minute. Satellite navigation voices sounding more and more urgent telling us to turn back, we’ve missed our opportunity. Find another route.

Is this what they meant, eleven years ago, by referring to her as a burden?

And yet I don’t recall them mentioning these things back then. In the sonographers room we were quickly told what she probably wouldn’t be able to do. No one told us about the things she wouldn’t be able to have.

Yet, after she was born I quickly learnt that the doing wasn’t all that important after all. We all do things differently anyway because we are all different. But the having is a different matter because we all have needs, even if those needs vary.

So why did they not tell me about the things she wouldn’t be able to have as opposed to the things she wouldn’t be able to do?

Was it because that would shine a very uncomfortable spotlight on us? On society, on Government policies, on community and on our own value systems? A spotlight on lack of resources as well as unwillingness to pay the price of putting others needs before our own.  It’s an uncomfortable conversation very few are willing to have.

Sacrifice.  Sacrifice is an ugly, painful word to many.

A word often now devoid of its sacredness.

No. Instead they focused on her. On her extra Chromosome. She’s the one with the problem. Not them, not us.  And if she were to make it past the 3rd trimester then she would still be the one with the problem. Not them, not us.

They made sure I knew this before I turned down their final solution. But they did not tell me everything.

They did not tell me that there will be so many things she can’t have “because we won’t allow it.”

At birth, she’ll be given a different Red Book to every other baby on the ward. Because she’s different.

They did not tell me this.

As she grows up, the clothes we sell on the High Street won’t fit her, she is the wrong shape. The shoes we sell will not support her mis-shapen feet. But we’ll provide her with a pair that do fit; however we’ll repeatedly let you know just how expensive they are. Please do not ask us for a new pair until these have completely worn out, useless and are falling apart.

They did not tell me this.

Oh and she won’t be able to use the same toilet facilities we do because they will not meet her needs. Please do not ask for ones that do. They are far too much money. You’ll have to lie her on a filthy floor instead. Better still, don’t go anywhere, stay at home instead.

They did not tell me this.

Her school will be different. Good but different. She will be hidden away there from her community but still cared for and loved there by those who know her worth.

I already knew this and it gave me hope. There are good people in our communities and especially in our schools.  We need them so much.

She can join in the very limited activities that we will pay other good people to provide, but you will have to attend countless meetings, fill out numerous forms and open your life to intense personal and painful scrutiny in order to access the funding we have set aside (under lock and key) for people like her.

They did not tell me this either.

There will be so many more experiences she cannot have, but not because she cannot do. And when, eventually, she leaves school, the opportunities for her to be part of her local community in a meaningful way will probably dry up to virtually nothing.

They did not tell me this. But others who are further along this road than me are already signalling what (doesn’t) lie ahead.

Doing things differently should never be a barrier to being part of a community. Love can always find a way, but love has to be an action not just a feeling. Love is a commitment. Love is hard work. Love is sacrificial.

The cost of living crisis began a very long time ago, but many did not notice.

What is spoken over the unborn with Down’s syndrome is a discourse agreed long before their parent(s) set foot in the clinic. An unspoken discourse….

All things considered, we’d rather you didn’t come in. Don’t take it personally though. No, no, see it as a kindness! To you, to your parents and to the rest of society. The intelligent, sensible thing to do. We really can’t afford to be quite THAT welcoming. Look, we’ve even developed this great new test which will help matters enormously. Routinely even; It’s no big deal, really. It’s for the best.

Diversity? Yes of course we like diversity. But only the diversity we like.

Obviously, we will leave the decision up to your parents. That’s the accepted thing to do. We won’t tell them what you can’t have in your life, just what we think you can’t do in your life. Make it a matter of personal choice, thus absolving us of our collective responsibility. 

They can be the ones to take the blame; your parents. Not us.

Either way. 

Either way you lose. 

When the cost of living is deemed of higher value than the cost of loving we all lose. To diminish one of us is to diminish us all. I now see exactly where the burden comes from, and it isn’t from my daughter who has Down’s syndrome.

I am glad that they didn’t tell me these things; even if they knew of them. Telling me what she would not do was enough of a barrier to overcome. A prediction based on a value system I do not share.

It seems to me that we’ve got this idea of scrutiny entirely the wrong way round.

We are scrutinising the wrong thing. Instead, the camera, the tests, should be focused on the scrutinisers, on our society, on us. Searching our genetic make-up, and finding out how and what went wrong? When did we allow these anomalies to creep in?  When did we become a society that is so focused on perfection, on achievement and success, so focused on ourselves? When did we forget that in order to truly live, we need first to love.

Downright Joy is found in the daily sacrifice.

It’s in the harshest of environments. It is breathtakingly humbling, eye-wateringly costly, yet remains the greatest privilege and honour of my life to receive. 

They won’t tell you that, but I will.


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Circus of Curiosity

Image by Claudio Kirner from Pixabay

There was no time to prepare you, we were running late. The show was about to begin, we had to take our seats. I pushed you through the heavy canvas opening, into the darkened arena. I’m not sure how much you could see, your eyesight is blurred even with your powerful bifocals. 

What did you see first?

Was it the red velvet carpet laid over the sawdust covered ring? Was it the faces of the audience, eagerly anticipating the start of the show. A show they’d been anticipating for days, weeks or months perhaps. Talking excitedly in the days leading up to their visit about what they would see. I often think that anticipation is the best part of the good and wonderful experiences we have in life. And when I stop to think that you do not live life like this it makes me sad. It shouldn’t. It really shouldn’t.

The tiniest of spiralling particles caught your eye as the spotlight fell. You had no idea what this was, where you were or what was about to happen. 

I knew what to expect. At least, I thought I did. Yet, somehow, you knew how to anticipate something you did not understand. You picked up on the atmosphere. You understood you were somewhere new, somewhere exciting, somewhere different. 

You were not afraid. You were not alone, of course. I was by your side, my eyes were talking to you over the sound of the band that had struck up loudly; reassuring you, letting you see that this new experience was a good one. I held your ear defenders in case you needed them, but you pushed my hand away. 

Curiosity was your ticket to the circus. You were born with a lifetime membership.

And unlike most people, you have never learnt how to live your life without it. 

Mexican music filled the tent and your curiosity took you right into the heart of the Mariachi band.  There you were, in the midst of the violinists, trumpeters, guitarists, vihuela and accordion players, though you never left your wheelchair.

Curiosity made you listen and led you straight into a dance.

You did not dance as though no one was watching, for it would not matter to you what others think. You danced anyway.

Curiosity said this was what you should do, so you did it. Curiosity called you, moved you, as it always does. 

Your ticket to the Circus was the same price as everyone else’s, though you entered via a different doorway and were given a different ringside seat to the rest of the audience. And I’m thankful for the Front of House Team who went out of their way to welcome you to the Circus. They sought you out even from a distance as I wheeled you across the field; not to turn you away but to honour you and make you feel welcomed. 

I have a feeling that those who live their lives in the Circus are born with the same ticket as you. They know that curiosity is a sacred thing.

You saw the same acrobats perform as I did; you saw trapeze artists, jugglers, clowns, musicians, dancers, actors as they told us a story. A story of triumph and joy, formed over years of practice, of falls, of knocks, of getting it wrong, of picking themselves up and starting again. Of determination, of commitment, of blood, sweat and tears, of silliness and joy, of community, of travelling to unknown destinations and pitching their tents in strange places, of wondering at times if they are going to make it. Of an uncertain but exhilarating future. 

We went to the Circus with hundreds of others last week, yet I believe you saw more, experienced more and took more from it than anyone else in that tent that day.

Years ago I was told by well meaning people that it would be kinder for you and for me if you were not born; only because you have Down’s syndrome. They did not know that bolted onto your extra Chromosome was a Golden Ticket of Curiosity with a ringside seat. 

And I’m convinced that you still have the best view.

Photo by Alison Morley


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Lemons and Pomegranates

I recently took time out from caring for my disabled child who has Down’s syndrome and took a trip to Italy to visit family I had not seen for a very long time.

It was also an opportunity to spend more time with my eldest child, and introduce her to a whole new cultural experience as well as meet some of our family for the first time. For one entire, exhilarating week, we wandered the cobbled streets of Sorrento, savouring the sights and the sounds of this beautiful coastal town in the Bay of Naples. 

Lemon trees lined our pathways, Orange trees also. In the narrow back streets, shops and bars jostled for space and competed for customers, their baskets filled with ruby red pomegranates and lemons the size of grapefruits. Leather goods spilled out of doorways giving off an intoxicating air of ‘We are Quality and we know it.‘

Sorrento, according to Greek mythology, was home to Sirens, who lured sailors onto its rocks with their mesmerising songs. Today, tourists and locals alike gather above those rocks, lured not by song but by sunsets. A place to stand and pause, capturing a memory or two against the vibrant colours of blue, fiery reds, orange and deepest yellow hues that fill the skies.

A short train ride along the coast finds the ancient city of Pompeii and its neighbour Herculaneum. In AD 79, a cataclysmic eruption of Mount Vesuvius, known to locals as His Majesty, destroyed the lives of over 16000 inhabitants and the livelihoods of those fortunate enough to escape the suffocating clouds of ash or the pyroclastic flow.  Wandering through Pompeii’s ruins, our local tour guide brought this legendary city to life as she told us stories of some of the people who once lived and worked here. The rich, the poor, the everyday and ordinary lives and their extraordinary blueprints for so much that we know and use today. Who knew, for example that house builders in Roman Pompeii knew the design for LEGO centuries before LEGO did? Our guide told us much of what she knew; human stories of human lives, achievements, hardships, joys and sorrows. Baking bread, shopping for clothes, going to the theatre, gossiping in the town square. Every day life of men, women and children, living and thriving in community.

‘Lego’ type design found on building blocks in Pompeii

One of the most remarkable outcomes, at least to me, of the story of the Volcanic eruption in AD79 is how the surrounding area eventually recovered from this catastrophe. The whole region is famed for its produce. Olive groves aplenty, vineyards, oranges, lemons and much more are to be found on the slopes of Vesuvius in abundance. And, according to historians and geologists, the land became far more fertile as a result of the eruption. The economy recovered relatively quickly and future generations enjoyed the spoils from the enhanced rich soil. They thrived. His Majesty Vesuvius brought life as well as death.

When my daughter, who has Down’s syndrome, was born I was given a poem. The poem was about a planned holiday to Italy being diverted in the air and landing in Holland instead. This poem is well known in the Down’s syndrome community and is a bit like marmite in the way it divides opinion. Personally, I found it to be well meaning, but deeply disappointing. No offence to the Dutch; I’d love to visit their country too one day. But I will not allow anyone to steal Italy from my heart or my dreams.  Having a child with Down’s syndrome is not a diversion or even a different destination; who knows where any of us will end up in life after all? Neither is it a catastrophe as some think or express.

What happened in Pompeii was a catastrophe. Having a child with a disability is not.

I do not minimise the challenges that come with bringing up a child with Down’s syndrome. I never have, I hope. The opposite in fact. I have no desire to ‘lure’ any parent faced with the news that their baby might have a disability into a false sense of security, when the journey is clearly fraught with, at times, hard, rocky places. But modern day Sirens still go off where disability or, in particular, a diagnosis of Down’s syndrome is concerned; bringing fear, panic and urgency in decision making. They need always to be tempered, in my opinion, with a softer, sweeter song. A song not of falsities or deception, but of hope. There is still life to be had, to be lived, to be enjoyed. And in many ways it is a life more vibrant and verdant than before.

I do wish that my daughter’s life, and the lives of others born or unborn with disabilities are seen first and foremost as the humans that they are. Perhaps, if they were, there would be no need for a Down’s syndrome community or a disabled community.

Just a community would be enough. 

A community more welcoming, more supportive, more vibrant, more fertile, more prosperous and hope-filled for all its inhabitants, its humans, than ever existed before. Thriving.


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Emeralds and Rubies

Photo by Sarah K Graves @ Pixabay

It’s a thing of beauty, my daughter’s favourite toy. It stands apart from the usual plastic playthings a child of her age may be drawn to. There’s a quality in the workmanship that can only be admired.

Bejewelled with rubies, sapphires, amber, amethysts and emerald ‘stones’, it spins on its wooden base with the lightest of touches. A little encouragement is all that’s required to make it dance.

Place it in the path of sunlight and it positively sings with joy.

And yet it’s fragile. Prone to tumbling off the table and clattering loudly, ungainly, disappointingly to the floor. Brushed off, knocked down, discarded.

And unless I am there to pick it up and put it back on the table, that’s where it stays. You see, my ten year old, non verbal, autistic daughter who has Down’s syndrome has never learnt that when something or someone disappears from her view, it or they are actually still there or somewhere else. Existing or existed, but now hidden. She has not learnt that her favourite toy can be experienced or even enjoyed again if only she would look for it. So she turns her back and walks away. She forgets the joy the toy brought and moves on to her next experience. 

Out of sight, out of mind. 

Until last week.

Last week was different. What changed, and why, I have no idea. Others more widely educated in these learning processes can explain. All I know is the toy dropped as it often does but this time she went looking for it. She bent down, she picked it up and it was she who put it on the table then continued to play with that which brought her joy. Her delight carried on as before, but her world had, in that moment, opened up and my delight was off the scale.

A first. An action I had given up on ever being possible. 

This time, there was no turning away and moving on to another experience. This was the one she wanted and she took hold of it with both hands. She noticed it had gone and that now mattered enough to go looking. My assumptions about her were wrong. 

Rubies, emeralds, amber and sapphire danced again in the columns of warm spring sunlight that streamed across the table. 

An ordinary table in an ordinary kitchen on an extraordinary day.

A pleasure that was hers for the taking and she was finally able to seize it.

Some ten years ago, after many weeks, she came to be discharged from the neo natal unit that had been her home and our place of safety.  A kindly consultant handled our departure and, sensing my unease at having to leave what we knew, told me of how much the world had changed even in a relatively short space of time. Just twenty-five years earlier her cousin had been born with Down’s syndrome and was routinely put into an institution. 

Out of sight, out of mind. 

The sadness in her eyes stayed with me. The if only was palpable. 

She knew there were so many colours waiting for this baby. My baby.

Ruby reds, ambers, sapphire blues, emerald greens.

I noticed she spoke only of her cousin in the past tense.

I hope someone walked with him and pointed out colours.

Like in a rainbow; though I imagine he noticed them first.

Last week the colours got a little sharper in our Down’s syndrome world. And now my daughter knows she can at least hold them in her own hands. 

I see others similar to Hazel, they are picking up brushes and painting rainbows like I’ve never seen before. New colours coming to the fore in a shifting landscape. Emerging artists taking up residence in a world that still struggles to embrace their art form. Their Down’s syndrome. 

We should not take their palettes away thinking they cannot paint. Neither should we begrudge what they find or what they are given. I have found they will share their lives, their experiences, their possessions willingly and extravagantly. They are not the ones needing lessons in humanity. From my little window on the world of Down’s syndrome Ive noticed they are often the first to show empathy to anyone who is treated differently.

When another cries in the room, my daughter cries too. Every time. 

Instead I want to stand back and watch them pick up the colours that matter to them. However they pick them up, whatever their understanding or ability is.  What will their world look like to them? How will they depict it, shape it, colour it? Who or what will they paint into it? 

I no longer want to assume I know what’s best for my daughter or for others with Down’s syndrome, or anyone else for that matter. I do not speak for them. They are not voiceless and never have been, it’s just our world paid no attention to their voice or afforded their particular art any worth. The loss of colour to humanity must be, I have often thought, incalculable. No. Instead, I want to learn from them, from the experts, the artists. I’m convinced we can all move forward into new and more vibrant life experiences when we do.

Of course I’ll have my own opinions, and in future I’ll try harder to keep these to myself if I cannot be sure they will do someone, somewhere some good. But I do want to see a people group who, though in the past were routinely placed in institutions and are still discriminated against simply because they have Down’s syndrome, are now brought front and centre where their colours can be seen as they were always meant to be. Not because they are better than anyone else, but because they’ve spent more time than anyone else under the table.

Out of sight out of mind. 

Some say diamonds are a girl’s best friend. I say it’s emeralds and rubies, and they can be friends to anyone.


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Perle di Saggezza

(Pearls of Wisdom)

Image by moritz320 from Pixabay

Eighteen months ago or so, you will undoubtedly recall, hand-painted rainbows began appearing across the country of Italy, at the start of the Covid 19 Pandemic. Strung from balconies where Italian citizens resided, unable to leave their homes and now trapped in a place of fear and uncertainty. The banners were often emblazoned with the words “Andra tutto bene” which translates as “Everything will be ok.”

Some citizens began to sing from those same balconies to one another. Accordions struck up, Sopranos serenaded, Baritones bellowed. And, before long, it seemed like the whole of Italy was singing. As the New York Times put it, Italians had found “A Moment of Joy in this Moment of Anxiety”.  Songs erupted from people who were clinging onto hope as well as learning to be thankful for the expertise of the medical profession that they were now so very dependent on. Something similar happened here in the UK with rainbows appearing all over as well as clapping and cheering for the NHS; though we never quite mastered the singing. That’s best left to the Italians – always.

A song, from the heart, is a precious thing indeed, and Italy will always have a very special place in my heart. Some of my family are Italian and have lived there all their lives. They too, draped a huge rainbow banner over their balcony, and sat behind it daily, looking down onto their fishing boats and nets from their centuries old home in the beautiful town of Sorrento in the Bay of Naples. A place so deeply loved by locals and tourists alike that it has a famous song of its own Torna a Sorriento. Yet this beautiful place was now filled with fear and uncertainty. Hope was called for, fearful hearts needed a new song to sing. And as they sang, so hope spread, even inspite of their circumstances.

Ten years ago, my family GP was the first medical person to say anything positive about what life might be like with my baby who had been born and then diagnosed with Down’s syndrome. We’d just come home from two traumatic months in the hospital NICU and I was struggling to come to terms with her diagnosis. Our GP was the first person to give us hope that we would be OK. That we would be more than OK in fact. His words to me were so much more than medical and exactly what I needed to hear. He said that life with a child with Down’s syndrome would be an incredible journey and I would meet some amazing people. He did not sugar-coat or minimise the challenges we were facing; there was no need, we were already up to our necks in plenty of those, medically speaking. He simply sat on the end of my bed, metaphorically leaned across, and in one sentence, opened a new window onto a brighter view. One filled with a more colourful sky which, from that moment on, began to chase away its gloomy predecessor. A vista that slowly began to fill up with the possibilities of a life of love and of loving.  His years of experience as a family Doctor told him that there was indeed still a life to be lived and loved. Hers, ours. He was not afraid to gently tell me so.

My GP has recently retired and so I took the opportunity to write to thank him and tell him how his words had made a life changing impact on me and my family. I have been told that he referenced my letter in his retirement speech, which has touched me no end.  You see, somewhere over the years, the hope he gave me as a frightened and overwhelmed mum, fearful of what an unknown future might hold for my little girl with an extra chromosome and for our family, has evolved into thankfulness on my part.  I felt it was important to say thank you for something so precious and transformative. For something better than any prescription, test or medical solution, helpful though those things may or may not be. I wanted him to know that I am forever thankful for his wisdom. 

Wisdom – from the heart, not just a text book – is a precious thing indeed. A pearl of great price.

Facts are undeniable, but finding hope to live with them, beyond them and inspite of them is where a diagnosis can become a beginning not an ending. My sincere hope is that every parent who is fearful on getting a diagnosis of Down’s syndrome, as indeed I was, finds such a pearl. I hope they too will find continued support from those who will help them to prise it out of its shell and wear around their neck as their pride and joy.

Italians know a thing or two about life; about singing songs of hope, of love, of loss, of joy and of sorrow. Their language is rich and heavy with the beauty of these things.

And I think, though I’ve never enquired, that my GP may possibly be fluent in it.

La Vita e Bella, si?