Downright Joy

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


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Beautiful Brilliance

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Our week, almost at an end, has been spent in a lodge, beside the most beautiful, tranquil lake in the heart of the Devon countryside. After a hectic and very emotional end of term as my daughter moves on from her beloved school to new beginnings, a few days to simply stop, breathe and clear the lump in my throat was just what I needed.

The local heron, ever present with its majestic flight up and over the trees, alighting daily on the bank for a spot of sentinel feeding. Moorhens and their young, swimming like dancing Egyptians back and forth. And swifts. So many swifts. Appearing out of nowhere, feathered fighter pilots storming the sky above the lake, feasting on the myriad insects gathered there.

But one particular lakeside dweller has, all week, evaded me. The Kingfisher. That most visually eloquent yet elusive of birds. Despite my constant attempts to spot it, I have failed. Until just now.

I’d done all the right things…got up early to catch it feeding, hidden myself behind the trees so as not to scare it. And I’d prayed…as I often do. Nothing.

So, today, after my early morning trek around the lake to find it, I sat down outside the lodge and admitted defeat. Perhaps it was nesting elsewhere this year. I prayed a final but very grumpy prayer. Please let me catch a glimpse.

Seconds later, and I mean seconds, I saw it. Unmistakable flash of brilliant blue and orange streaking across the far side of the lake. I’d seen it. That was enough for me. I was happy. But there was more. Much more. A pair of Kingfishers darted here and there, right in front of me. An acrobatic air show of the finest order.

And I realised something. This visual feast, this Kingly display had been there all the time. I just needed to stop looking so hard in one area, for what I wanted to see, but open my eyes to the entire landscape.

In the Down’s syndrome community, and in life, it’s easy to feel pressure to see faster progress in your child’s development. Milestones that should be reached and ticked off an imaginary list. Sitting up, standing, walking, talking, or even toileting. And when our children can’t or don’t reach these milestones when we thought they would it’s so easy to feel discouraged. That we must be doing something wrong. That it’s our fault. That’s not to say we don’t push for them or encourage them to reach their full potential. But what is potential?

My child may not be able to walk very far and she doesn’t have many words. She is not yet able to fully feed by herself and is reliant on a feeding tube. Yet her potential is being realised every single day regardless of these so called limitations, or unmet milestones. Every day she shows love, joy and compassion to those around her. Every day she breathes life into our environment with her laughter and her sense of humour. Every day her life, her very existence, reminds us to give thanks for the transformation she has brought into our lives. Her sister’s life – enriched beyond measure as she instinctively and lovingly cares for and delights in the adoration of her sibling. The richness to be found in a person with Down’s syndrome, and that can be found in her too, is incomparable.

Whatever this world has in store for her life, however good, will never be able to equal what she has stored up and brought into our world. It’s a sadness to me that so many people won’t even catch a glimpse of this beauty, this brilliance in so many people with Down’s syndrome. So focused are they on achieving their goals they believe the lie that society has told them – that Down’s syndrome is a risk to their dreams and successes and must be dealt with – the earlier the better, preferably before they are even born. Brilliance not even given the opportunity to be seen.

I want brilliance in my life. And not just inspirational glimpses. I want more.

I have it thanks to my child with an extra chromosome.

Beautiful brilliance.

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Framed

Today is my birthday. It’s a big birthday.

Its ten years since my last big birthday. The biggest birthday I’ve ever had, though there was and is no zero on the end of it.

Ten years since I woke up in hospital, 29 weeks pregnant, surrounded by monitors and hooked up to machines. A nurse stationed at the foot of my bed. I’d spent a week in Intensive Care as doctors fought to save not just my life but that of my unborn baby. One by one, my major organs gradually shutting down. My husband told to expect the worst; doctors didn’t know if either of us could be saved. I was hours from death.

Ketoacidosis- a condition I’d never heard of, had crept up from nowhere. We had been enjoying our last holiday before the baby was due. Brixham; a pretty little fishing village on the Devon coast and a place I’ve not been able to revisit since, such are the painful memories it evokes. The holiday had to be cut short. It’s a condition that is fatal if not immediately treated, brought on by poorly managed or untreated diabetes. As I’d had no previous indications of diabetes in my pregnancy it was a mystery why I became so ill. So unusual, that doctors later asked my permission to write a medical paper on me for their journals.

I woke up and the doctor wished me happy birthday.

For ten years I’ve always considered it a terrible birthday. On my discharge from ICU, I was offered counselling- such was the potentially traumatising effect of a week in ICU.  I declined. I felt no need – I had survived and so had my unborn baby. I had something wonderful to look forward to and that was enough.  Over the years I’ve pondered on the experience more so. Only recently discovering, for example, that the weird hallucinations I had whilst there were as a result of the cocktail of drugs being pumped into me. Perhaps if I’d taken up their offer I would’ve known this.

It’s taken ten years for me to celebrate that birthday. May 7 2009 is the day I got given my life back. It’s the day I knew I was still going to be a mum.

It was the start of the next ten years.

Ten years that have brought much joy into my life as well as difficulty. Ten years that have brought formal diagnoses including Down’s syndrome, Dyspraxia, and recently Autism into my life through my children. Diagnoses that, at one time, would have filled me with fear but that have instead brought me into the most amazing community, and given me two unique children who, along with the challenges, bring me indescribable joy.

There is much talk in the Down’s syndrome community about changing the narrative around a diagnosis. A well-worn phrase that I wonder may be past its sell by date. Too clichéd perhaps; I’m not sure. Yet the desire behind it to see a story told differently is one I applaud. For so long, pregnant women have been told of the ‘risks’ of having a child with Down’s syndrome. These are well known and documented. A quick google search will (sadly) bring up all kinds of fear inducing scenarios for a new mum; many of them based on outdated and frankly incorrect information, using terminology long since thrown into Room 101 by those who know better.

A snapshot of my own experience in the last ten years shows there’s much to be done. Ten years ago doctors fought to save the life of my unborn baby at 29 weeks. A little over two years later and doctors and midwives in the same hospital were telling me I should consider aborting my second unborn child even up to birth if I wanted.

Why? All because of a possible extra chromosome and the fears surrounding it. One life worth preserving, the other disposable according to their rule book. Though I am thankful to the doctor who, after initially offering me this ‘way out’, apologised saying he wished he didn’t have to but that he had to ‘follow strict guidelines’. The stats bear him out. Over 90% of babies found prenatally to have Down’s syndrome in the UK are routinely aborted.

The story of Down’s syndrome played out in many hospitals and clinics is a story that needs to change because it’s not the whole story. Parents are given only a snapshot of what life is really like with an extra Chromosome. And that snapshot is often out of focus. Framed in such a way that obscures the joyful reality of loving a person with Down’s syndrome.

It’s not lost on me either, that my first child – the one doctors fought to save has since had more than her fair share of challenges; diagnoses of conditions we didn’t know she had in utero. Yet no one ever suggested terminating her life. This will change if the proponents of pre-natal testing get their way and more conditions are targeted in the womb. So much they will be able to tell you and yet so little.

Ten years ago I almost died. A horrible, dreadful experience.

Ten years ago I was given a chance to live.

Ten years ago the doctor stood beside my bed, a week after he said I might not live, and wished me happy birthday.

Ten years since he and other skilled professionals saved my life and that of my baby. Ten years since many people prayed for me. A few came to ICU and prayed over me.  Some are no longer here themselves. I’ll always remember my dear friend Vicky (whose birthday I shared) getting past the tight security that would only let family or clergy in. Vicky was not one to ever let protocol get in her way and she came to hold my hand, praying as I drifted in and out of delirium.  I don’t understand why she is no longer here and it hurts my heart, but I smile at that memory.

So I will reframe my birthday of ten years ago. I won’t change the story by wiping out the painful, difficult, anxious, terrifying parts. But I will celebrate all that was good and all that began that day. I will stop remembering it in mournful, self-pitying tones but rejoice in the new life it began.

I will look at the whole picture and put it in a new frame. Some stories are worth telling from a different perspective.

Happy Birthday to me.

Dedicated to Vicky Taylor.  

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Miss you Vic, happy birthday x

 


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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.

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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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Abracadabra

 

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Abracadabra

This afternoon, my 9 year old daughter rediscovered her Magic Set, a gift for her birthday some years ago. A happy hour or so followed this discovery as she relearned and performed some old tricks. Tricks made trickier by her dyspraxic brain, we none the less cheered and applauded her with “wow” and “amazing” and “how did you do that?” Ignoring a dropped card here and there or the not so slight of hand that kept revealing its secrets, we allowed ourselves to be thoroughly entertained by her enthusiasm and joy.

Magic.

We smiled as we recalled her much younger self with the same magic wand. Sent to her room for some misdemeanour or other, she slammed the door, waving her wand as she did so, shouting those magic words “abracadabra, make everything MY WAY!” Her foot stamping in time with the last two words.

In a year when she has discovered that Santa isn’t real and the tooth fairy is not to be trusted, you’d be forgiven for thinking that our house is now devoid of magic.

In the words of CS Lewis, there is a magic deeper still…..

It has nothing to do with fairies or elves, magicians or illusionists.

Before I was a mum I would imagine magical moments like this: happy parents swinging their toddler on the count of three as they walked along a path to a park. A familiar scene, but one that, in reality, never happened. Neither of our children could walk when they were toddlers. The shout it from the roof tops moment when my first born took her first steps as a 3 year old was soon eclipsed by another. The deeply personal moment she stood up at home, later that day, and whispered proudly to herself “I can walk”.

Magic. Deep Magic.

The magic happens when we least expect it. Like it did yesterday.

Yesterday, Hazel walked hand in hand with us, her parents, very slowly along a path for the first time in her life.

Nothing remarkable or magical to the untrained eye. To the non believer, there is nothing to see.

Hazel is my almost 7 year old daughter who has Down’s syndrome and cannot walk by herself. Hazel is wheelchair dependent.

Deeper magic.

And, just a few days earlier, this same magic had appeared at bath-time. Her favourite toy that blows bubbles and plays a tune had stopped working. The bubbles had run out. A regular occurrence. Usually Hazel would simply turn away and look for something else to play with. Not this time.

Magic was in the air.

She turned and looked up at me. Directly. Urgently.

Mum you need to fix this for me she said.

Except she didn’t say a word. She can’t. She does not yet have the words to tell me when something is wrong or when she wants something.

But she looked at me. For the first time in 7 years she told me what she wanted by looking at me.

Magic. Deeper magic.

I’ve been taking a break from blogging and some social media recently. Not because I don’t like it, the opposite is true. But having my head in a screen as often as I was meant I was in danger of missing the magic. I want to be fully present in these moments. They are a long time in coming and all the more magical because of that.

When a child reaches a milestone it’s always a magical moment.

When a child or person with a disability reaches a milestone, or does something they have never done before it is beyond magic.

Deeper magic.

 

“There is a magic deeper still that the witch did not know”

CS Lewis, The Lion, The Witch And The Wardrobe.

 


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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