Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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Kaleidoscope

Kaleidoscope

Some say that the old toys we used to play with as children were the best. I’m inclined to disagree; I much prefer, on the whole, the technology we have nowadays. iPads win over Etch a Sketch for me any day.

I recall a time when, as a child of the seventies, Science Sets were all the rage. Big shiny boxes with a photograph of a child wearing a white coat and spectacles on the front. Holding in their hands a bottle of some brightly coloured liquid and a pipette. Always a pipette. Test tubes, potions and conical flasks found their way into many a bedroom- turned laboratory.

But they were not for me.

I never had a Science Set. Perhaps I never asked for one, I’m not sure. It seems unlikely, given that the only toy I was interested in experimenting on was a Girls World; hairstyling and make up appealed more to me than staring into a microscope.

I did, however, own a kaleidoscope. One of those garishly coloured tubes with a twisty end and a lens to look through.

A toy which, on the face of it, could not compete with the Science Set. A toy which was easily disregarded and unlikely to make it onto most children’s Christmas lists. Undesirable. Though, if your childhood was anything like mine, then you probably got one anyway – it was the kind of toy your Granny would buy you.

Yet it was a toy that held a secret.

A toy that, when you held it up to the light, something beautiful happened – if you looked inside it. Brightly coloured shapes would form into patterns, shifting around as you twisted it. A new landscape with each turn. Different, each and every time. No pattern ever quite the same. Vibrant. Drawing you into its charm. As you closed one eye, whilst the other peered through the lens, all else around you became obscured.  A toy that took you into a new, mysterious and enchanting world.

Mesmerising.

A toy that did not have to be cleaned up or packed away in its box. A toy that, when most other toys had lost their appeal, kept on giving. All you had to do was take it in your hand, put it to your eye and look up. Look up at the light and take a closer look at the beauty that was within.

Along with me, those mini scientists grew up. Most abandoning their childhood experiments in favour of other career paths. But some continued. Their interests awakened at an early age and their skills honed in a state of the art, technological era of scientific discovery. They are the scientists of today. Brilliant minds pursuing new and exciting technologies.

Some of them have made new discoveries. Most recently in the field of pre-natal screening. They have found more advanced ways than ever before of telling a pregnant woman whether the baby she is carrying has Down’s syndrome – though they are not always as accurate as those who sell the tests  sometimes claim.

More advanced ways to view the unborn life using big grown up Down’s syndrome detecting Science sets.

If only they’d use a kaleidoscope; they would discover so much more.

Look up at the light, see the landscape.

Kaleidoscope 2

 

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Epiphany

I am a treasure seeker.

I love to be surrounded by beautiful things. Not necessarily expensive things – though I like them too. Just beautiful things. Recent treasures I’ve acquired are hanging in my redecorated living room; a picture of a woman gazing out of a window, a bird cage on the table behind her. Anything with a bird cage in it is beautiful to me, there’s something deeply enchanting about them. Then there’s my framed Frida Kahlo staring strikingly out from the chimney breast. These are my latest beautiful things.

My children love treasure seeking too. Over the years my eldest has kept an assortment of valued bits and pieces she has found or been given. A diverse and eclectic mix of fascinations. Conkers happily collected on the way home from school one day, actual fairy dust in a tiny bottle, confetti from a family wedding, bits of paper from friends with “bff” scrawled on them in childish form, usually under a hand drawn princess or something fluffy and adorable.

I remember the time, as a toddler, she literally held onto one particular treasure for days. Ignoring the vast array of toys she had successfully acquired my daughter chose, as her most favoured possession, an empty margarine tub. She carried the margarine tub with her wherever she went and at all times. Her limited language skills at that point meant I never found out why the tub found such favour in her eyes. Its worth was not apparent to me, to begin with, but her love for it was. The margarine tub became important to us all.

Her younger sister also finds treasures of her own. A discarded ribbon from an unwrapped gift will please her often more than the gift itself. A chiffon scarf that can be floated in the air will delight her if she discovers one lying around. And as for autumn leaves cascading down around her on a windy day; well that’s her idea of heaven. Heart singing moments for her and for those who care for her.

Treasure for the soul. Like balm.

Where your treasure is, there will your heart be also….a biblical truth which, whether you have a faith or not is hard to deny.

Most recently, my eldest acquired a new and precious treasure which she now keeps in a glass jar.  A fragment of Myrrh, another kind of balm, given to her as an Epiphany reminder by a man who has spent his life treasure hunting in the Middle East. Canon Andrew White, often referred to as the Vicar of Baghdad; a man who continually seeks out the good in those often vehemently opposed to each other, to bring reconciliation and facilitate peace where only conflict exists. A man who knows where real treasure is to be found. Found among people the world often dismisses, often fears, and often shuns.

My wealth has increased beyond measure since my daughter was born with an extra chromosome seven years ago. My Epiphany.

Hazel has Down’s syndrome. A condition, a group of people, so easily disregarded, yet who, before they are even born, are sought out more aggressively than ever through modern screening methods. Feared and shunned by a society that cannot see the treasure that is within.

Society…they are the ones whose pockets are empty. They have not found this treasure.

My pockets are full and so is my heart.

hazel with grass

#dontscreenusout


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The Gift

My Gift did not come wrapped in shiny paper, nor tied with a velvet bow.

My Gift was unexpected, it caught me completely off guard.

I struggled to see that this Gift was for me;

Gifts are not meant to be hard.

 

My Gift came with a label or two; one said “extra chromosome”,

The other read “handle with care”.

The second; I tore off and tied to my wrist.

The first, I hid, too afraid others would stare.

 

All around me other Gifts were being delivered,

Amongst fanfares, banners, balloons and flowers.

My Gift came amid hushed tones and frowns, with questions, fears and tears.

Concerns that had not crossed anyone’s mind at earlier baby showers.

 

How could I look after this Gift? There must be a mistake.

Surely this Gift was not intended for me; it was never in the plan.

And yet, in my Gift I saw a reflection of me so clearly staring back;

Azure blue almond shaped eyes, oh those beautiful almond shaped eyes!

 

My Gift. My Gift is, without question,

The best present I’ve ever been given.

Granted, it took me a while to appreciate; I wish I’d realised before.

My Gift has a beauty beyond understanding, my Gift is easy to adore.

 

My Gift keeps on giving and giving.

Occasionally it might be in sorrow; far more likely I find, it’s in joy!

My Gift is priceless, its worth cannot be measured.

If your Gift is labelled the same as mine, it’s a Gift you will learn to treasure.

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016

For more real life experiences from families of people with Down’s syndrome check out

www.positiveaboutdownsyndrome.co.uk

Find out more about Down’s syndrome from

Down’s Syndrome Research Foundation UK

 


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This Enabled Life

Pony

If you’d told thirty something me that, in ten years’ time, I would be immersed in the language and experience of the disabled (from a carer’s perspective), I would have been horrified. Certainly fearful. The language surrounding disability so often negative, conjured up outdated and prejudiced ideas in my mind as to what it really meant to be disabled. ‘Stick man’ in wheelchair symbols segregating an entire group of people, robbing them, to some extent, of their individuality.

The disabled. It was a word I was distant from.

Ten years on and, for me, the word has changed from something to fear into someone to love.

Two someones actually.

Both my children find themselves labelled, to a degree, with this word. Down’s syndrome and, more recently, Dyspraxia have propelled them and me into a world of disability.

One corner of this world is Riding for the Disabled. An iconic name. RDA. Falls easily off the tongue. And though I wouldn’t want to change the name, in some ways, it’s a misnomer. Let me tell you why. Hint…it’s magic!

You see, the moment a person steps inside an RDA arena, or is wheeled inside, they actually cease to be disabled. Yes really, they do. Honestly. I’ve seen it with my own eyes.

Time and again their disability, whether it’s an obvious one or a hidden one, appears to disappear! Like magic. At least, that’s what’s happened to both my children whenever they’ve gone there.

Feet that could not walk given an opportunity to run on borrowed legs, four not two. Instead of staring up from the confines of a wheelchair, eye contact tricky when level only with an elbow; they now look down from a great height and are masters of all they survey.

Arms and hands that struggle with the simplest of everyday tasks take hold of the reins and quickly learn to control the gentlest of giants.

Voices that are mostly silent now dare to be heard. A whisper or a shout, for the first time perhaps. Sensing their non-verbal rider has an untold story to tell, the pony lends a listening ear, without comment or expectation, without judgement or prejudice.

Self-esteem, buried deep by exclusion or failure, emerges into warm sunshine. Bursting out in a smile that wasn’t there before. High fives and fist pumps were made for moments like these.

No longer disabled but enabled.

Enabled to do something physical, something challenging, something motivating, something rewarding. For some, it’s life changing.

Riding for the Enabled.

I know it’s never going to be a strapline, nor does it need to be. The real magic has nothing to do with the name, or even the ponies, precious and vital as they are. It’s the people. The volunteers. The enablers. Those individuals who sacrifice time and money to enable others. They are the ones who make the magic happen. Without them, each and every one of them, the disabled, would stay as they are. RDA – in our case Cotswold RDA, has a fantastic team of enablers. They deserve to be recognised far and wide for their selfless work. Work that changes lives, quite literally.

In the last 10 years I have come to know lots of enablers. People who go out of their way to enable our children, our family. Some are professionals. A Paediatrician who has given us unequivocal support. An Occupational Therapist who has pulled out all the stops to bring about positive change. A SENDCO who consistently validates our concerns and works with us to help our child. Teachers & TAs who go the extra mile to create the very best learning experiences for both our children. Nurses who have given us respite and support. GPs and their staff who make difficult times easier to bear. Charities and therapeutic services, speech & language therapists, physiotherapists, music therapists. People who work hard to enable others. This list is endless.

This is not to sugar coat living with disability. There are many tough times. Next to my laptop is a letter I received this week from our Paediatrician, summarising 18 months of assessments, hospital visits and other appointments. It’s a letter that those who have been on the road to a diagnosis will be familiar with. One that lists, in its heading, far more issues for our eldest child than we had perhaps realised. But the sharp in-take of breath that is needed on first reading a letter like this has been quickly replaced with relief and, most importantly, hope. Why? Because of the enablers we will now meet as a result. People who will help our daughter to succeed not fail.

Sometimes we look for them and can’t find them, this is true. Sometimes they are there but we are prevented from meeting them due to tightly held budgets or politics and red tape. Sometimes the fight to meet them is extremely frustrating, overwhelming.

But they are there.

And so we go into this post-diagnosis stage of our lives looking forward to meeting more enablers.

People who make a disabled life an enabled one.

M & H at RDA

Find out more about the amazing work done by Cotswold RDA