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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If the cap fits

mannequin-732631_1280

“But what do you do all day?” Is a question I am sometimes asked and, well, I don’t like to be impolite but, seeing as you asked (and even if you didn’t) I will try to answer it.

Today I went into battle. On the front line. I pushed back into enemy territory. My efforts were resisted but I persevered.  I took ground that was being strongly defended. I claimed it for my severely Dyspraxic child who needed a service that was being denied. Today I was brave, but I was scared.

Today I was a Soldier.

Today I changed a broken feeding tube, in an emergency.  I bathed an open wound and I administered yet another new medication. Today, as every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a Nurse.

Today I learnt all about Proprioception and how understanding it could really help my Dyspraxic child. But first I need to learn to say it. Today was enlightening.

Today I was a Student.

Today I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found Platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. Today was magical.

Today I was a Storyteller.

Today I gave my child a haircut at home. A trip to a hair salon too distressing for a child with sensory issues. Today my home became a salon. One with toys and television and iPads. Today I felt like I achieved the impossible.

Today I was a Hairdresser.

Today I trawled the internet. Endless articles on Down’s syndrome, on Dyspraxia, on Sensory Processing. Today I drank a lot of coffee.

Today I was a Researcher.

Today I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. Today I had fun making toys that would help my children make sense of the world around them.

Today I was an Inventor.

Today I attended another appointment to discuss the needs of my children. The sixty something appointment this year. Yes, honestly. I’ve counted. Today I was early.

Today I was an Advocate.

Today I wrote a blog highlighting the discrimination faced by those with Down’s syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome.  I tweeted my MP. Today I got angry.

Today I was a Campaigner.

Today I watched my anxious child find new confidence in an activity she had previously not coped with. Today was brilliant.

Today I was a Cheerleader.

Today I lost count of the phone calls I made, the emails I sent. Today I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. Today I despaired.

Today I was an Administrator.

Today my glass is half empty. Yesterday, it was half full. Tomorrow is a new day.

Today I am thankful for the glass.

Today I met with Trainee Doctors and told them about life with a child with Down’s syndrome. Today I busted some myths.

Today I was a Teacher.

Today I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. Today I tried hard not to cry.

Today I was a Wrestler.

Today I cradled my child as she drifted off to sleep under anaesthetic for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.  Today I could not do any work.

Today I was broken.

Today I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals. Today I thought my heart would burst.

Today I was the happiest woman alive.

I am a mother to two amazing children,  both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!

 


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The Ripple Effect

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The Ripple Effect

A letter to my daughter.

I’m sitting by the side of a lake; our home for a few, blissful July days. A pair of herons make their graceful ascent from the water, up, over the trees and out of sight. Willows stoop to meet their reflections. An abundance of Water Boatmen paddle effortlessly across the surface, making walking on water look like the most natural thing in the world.

Carp (at least I think that’s what they are…I’m no fisherman) occasionally leap out of the water making me jump (are they meant to do that?!). Disturbing the peace yet also bringing it.

The water ripples. Concentric circles reaching far and wide. Their effect is mesmerising. Tranquility resonating across the lake to each bank. Practical too; the ripples help ensure that this particular man-made lake does not become stagnant.

It’s almost 7 years since you disturbed my peaceful life. I had it all in order.
Capability Brown had expertly landscaped my dreams. My home, my family, my life.
Everything was coming up roses and all my ducks were happily in a row.

Then you arrived, with your extra chromosome.

In a flash. Like that carp leaping out of the water.

I was not prepared. My peace was disturbed. My calm, tranquil, ordered life disappeared. Or so I thought.

I saw you there, suddenly in the centre of everything. Thrashing around, fighting for breath, fighting for your very life in those first few, terrifying weeks.

A shocking moment. One that lasted much longer than it should have, I am ashamed to say. I questioned whether you should be here at all. Was this in the design?

Didn’t you take the test?” I was asked on more than one occasion. A mixture of pity and disbelief on the faces of those who asked this most insensitive of questions.

Yet nothing could have prepared me for what was to come. There is no test for that.

The ripples.

The far reaching, calming and breathtakingly beautiful ripples of your very existence.

Nothing prepared me for the joy you would bring to our lives and the lives of countless others whom you meet. The laughter you bring. The smiles you so freely give.

Nothing prepared me for the restorative air you would help me learn to breathe. Deep, satisfying, life giving oxygen. I could go to the finest health resort in Switzerland and still not breathe air of such quality.

Nothing would prepare me for the tranquility that surrounds you.
A tranquility that has nothing whatsoever to do with noise or indeed the lack of it.
How could it? You are so noisy and your life is filled with chaos! Even as I write, the natural tranquility of just being by a beautiful lake has been brutally broken. Broken by the need to perform an emergency feeding tube change on you. Yours has broken. It keeps you alive as you cannot yet eat.

My heart is racing, my hands shaking. Life is fragile and yours particularly so.

No. The tranquility that surrounds you, that you carry, is to be found by seeing the world through your eyes.

You already knew about ripples. You were born to understand their power, their beauty.
Your intelligence is unintelligible to some people. Dawkins and his like couldn’t begin to understand. They are still merely gasping for air.

I notice there are bulrushes on this lake. I’m reminded of another baby. One that in biblical times, was hidden by its heartbroken mother in a basket and placed among some bulrushes. Someone wanted that baby, along with many others, dead.

There are those who think you should not be alive. They’ve even developed a way to help detect your extra chromosome long before you are born. A test, they say, that will tell a mother all she needs to know so that you or people like you need not be born at all.

They see the disturbance, but they do not see the ripples. They have no test for them. No test for joy. No test for all that makes up a person’s life. The test they have is deficient.

And I am forever in your debt for disturbing my world and bringing me great tranquility.

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Just one of three beautiful lakes at South View Lodges, South Devon

 

 

 


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Windmills and Bicycles

I love the Chelsea Flower Show. Glorious, decadent, sometimes ridiculous, but always sumptuous. A televisual feast that I dine out on each May. A week long explosion of colour in my living room (I’ve yet to actually go there). Designers clamouring for hard won awards from the judges. A label to be proudly displayed for all to see, opening doors to further fame and success.

Inspired by this sublime, horticultural festival I annually turn my attention to my own patch of ground or ‘garden’ as it’s rather hopefully known. I imagine how I will transform it into my own haven of tranquility; one with an edgy, urban, free flowing design, softened by wispy aromatic planting and ethereal water features. Award winning. Gold Standard or at least a Silver Gilt.

But not today.

Today the paddling pool is out. A large blue inflatable bath sits slap bang in the middle of the lawn. Well, perhaps lawn is a little optimistic. But there’s definitely grass, of varying lengths. Quite a few patches of the stuff in fact.

There is a border…of sorts. Hardly wispy though. More weighty. Overgrown even. A tree or two. A couple of swings, a small trampoline and a shed.

Oh. And a windmill.

A bright, colourful and very large plastic windmill.

You see, the garden of my dreams is not the garden of my reality.  The garden I envisaged is not a bit like the one I actually have. A different reality.  Not how I imagined.  A bit rough around the edges in places. Needs maintenance.

The garden I have is magical.

Yesterday, she made the windmill spin. My daughter has never done that before. The windmill I purchased on a whim from a cheap and cheerful retail outlet just the other day.

She’ll enjoy looking at that.

But she did more than look at it. She made it spin. She actually made the windmill turn. Over and over again. An action that most children would learn to do in a heartbeat has taken her years to accomplish. It does not matter. She did it. And she loved it.

Our garden is a safe place for a child with Down’s syndrome.  A place for her to be. To feel, to smell, to touch, to taste, to explore. Our garden is her space. A safe space. A nurturing space. A joyful space.

It’s also a place where her older sister can be herself. It’s where she can, if she chooses, practice riding a bike – away from the quizzical looks of others. She has yet to be able to ride a bike properly. Dyspraxia – a life-long developmental condition – has recently been added to the list of our own awards. Another formal label now appears at the top of the endless stream of hospital letters that we receive; I’m not complaining – labels can help open doors to a different kind of success. Dyspraxia makes the things that most children take for granted so much harder for her. Climbing, swimming, running, jumping, riding a bike or a scooter – they are all typically huge challenges for a person with Dyspraxia. It also brings with it a host of daily sensory challenges and stresses.

Our garden is her safe place too.

We are soon to have some long overdue landscaping done. Some order is most definitely needed, I have to admit.  A patio would be nice.

Chelsea is glorious. Perfection. But in many ways it’s an illusion. Temporary. Taken down once the cameras have been switched off.  For most people, their gardens are not like that. And, as much as I love Chelsea, I am sad at how it leaves me feeling when it’s over. As though my garden isn’t good enough. Defective. Less than.

Our garden is not a Chelsea garden. Yet, despite perceived flaws in its design it brings great beauty and depth to our lives. Sometimes chaotic, sometimes peaceful. It is an ever changing landscape that challenges me and captivates me at the same time. It is a tough but beautiful place to be. I want no other garden.

I think Chelsea is perhaps selling fake flowers. Artificial.

Someone told me once that I could aim for perfection with my unborn child. By not having her. By ending her life before she was born and trying again for a better one. A gold standard, award winning one.  I like gold, I really do.

But I prefer windmills.

Hazel and windmill

 

 


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Snowflake

My daughter is, as I write, shouting at snowflakes. Loudly, as they whirl around outside, on a bitterly cold and windy March day.

Hands raised, fingers tracing the snowflakes path as they tumble to the ground. Transforming her world. Well, the garden. And, for a little girl with Down’s syndrome who, as yet, has only a few words in her vocabulary, snowflakes make her shout!

She’s not the only one who shouts at snowflakes.

Disruption, hard work, cost.

Beautiful, intricate detail. Delightful. So exciting!

Can’t get to work. Social plans cancelled. Schools shut. Wish it would go away.

Mesmerising. Wide eyed and wondering “what is this magical show taking place outside every window?” Joyfully in the moment. This moment. Now. It’s snowing. And it’s beautiful….to her.  A Narnian landscape.

Snowflakes

Each one unique. Individual. Intricate designs. No two the same. Small, tiny even, yet, collectively, they transform the landscape.

Snowflake

A word now used to insult and/or define an entire group of people. A generation. We seem to be a society that is often intent on name calling, labeling, closing down the voices of those we disagree with or fear. Silencing them without ever trying to understand them. Holding fast to prejudiced views and opinions. Discriminating.

Beautiful words made ugly.

A society that says it is diverse, yet one that seeks to silence that which it fears or does not understand.

My daughter, who has Down’s syndrome, shouts at snowflakes. Not because she is angry with them but because she is captivated by them. Transfixed.  They are of great value to her.  She cannot take her eyes off them.

There was no snow when she was born, 6 or so years ago. Instead, the rich warmth of autumn leaves swirled around the ambulance door as nurses whisked her off into the Neo Natal Intensive care unit, her life in the balance.

Autumn colours are magnificent too. Vibrant. I wish now I had taken more time to notice them. Instead, I chose to look away and stared unblinkingly at grey skies.

Her life was fragile. Our life was disrupted. Plans cancelled. Couldn’t work. Costly. Painful.

For a while I was angry. I may have even shouted.  The words Down’s syndrome were, to me, and to my shame, ugly words. I hated them. Prejudice I didn’t know I had ran so very deep. I could barely even say them.

Until, that is, a nurse came in and said just four words to me. Four words that I so badly needed to hear but that no one (other than family) had said. Words that had been said about her older sister the moment she was born.

Hazel was nearly a week old before I heard them.

“Congratulations, she is beautiful”

Words are so powerful. Transformative. Life changing. Life enriching.

Today is World Down Syndrome Day. Today, all we really want is for the outdated and discriminatory language surrounding Down’s syndrome to change.  Language that breeds fear and uncertainty changed into language that brings hope and understanding.  Using different words. Let’s ditch the damaging discourse on Down’s syndrome. Babies, children, young people, adults with Down’s syndrome are worthy. They are of great worth, as are you and I.  They are people, not defects. They are not a ‘risk’ or a ‘problem’ or even ‘horrible’- as I recently heard of them being described by someone involved with pre-natal screening.

Change the narrative.  Down’s syndrome is not something to fear. To avoid, or get rid of.  A person with Down’s syndrome is so much more than a medical list of ‘problems’.

We miss out on the joy when we focus solely on the difference, the disruption to our plans, the cost. That one extra chromosome.

Cost, financial burden to the state….all words that have been tossed in the direction of people like me – parents of children with Down’s syndrome. As if these words have anything to do with a person’s worth?

I see a change in the landscape.

A group of mums, some of whom I am proud to know as friends, have caused a bit of a snow storm themselves this week. They have shown, in one short, beautiful (and now viral) video that “Down’s syndrome” are not ugly words. They are words of great and extraordinary worth. Words that speak of love and joy and a life worth living. These women and their unique and beautiful children are collectively transforming the landscape.

And it is a stunning landscape.

50 Mums |50 Kids | 1 Extra Chromosome

WDSD18 TS

www.youtube.com