Downright Joy

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


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Funny that.

Laughing boy

Did you wake up laughing today?

My daughter did, just like she did yesterday and the day before that, and the day before that too.

Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.

Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.

It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.

Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.

Just like you, just like me.

A range of emotions.

But because she is non verbal she has to express them differently.

Unlike you, unlike me.

But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day.  I’d love to know what makes her laugh.

Did you wake up laughing today? Or did your thoughts turn immediately to worries?

Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.

My daughter woke up laughing.

My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.

Funny that.

 

 

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Camino

Camino pic

I’ve long been fascinated by the Camino de Santiago; a network of pilgrimage routes leading to the cathedral of Santiago de Compostela in North Western Spain. Known also as The Way, it’s a place where, according to tradition, the remains of Saint James the Great are buried. It’s a route that has become popular not only with pilgrims, but also hikers, cyclists and others looking to challenge themselves as well as looking for something else, something deeper. A pathway walkers often say they tread to find peace and a new sense of purpose to their lives. A restorative ramble in a remarkable landscape.

A highway to hope.

I would love, one day, to go on the Camino and experience if for myself, though given my less than enthusiastic approach to camping, hostelling or living without my home comforts, I’m not sure if I am really up for the challenge. Yet I am still drawn, not just to the beauty of the pathway itself, but to those who tread upon it. Countless lives that have walked that pathway for all kinds of personal reasons. Some religious, others not. Each story important and relevant, in some way, to all those who walk it. Why did they take that pathway when they could perhaps have found an easier way to relax and find inner peace?

I think the answer lies in the hope that they find along The Way. Hope that wells up as they experience its beauty, its ruggedness, its challenges. Hope freely given to them as they meet different people, from all walks of life, from many different countries. They may go there for all kinds of reasons of course; exercise, well being, a chance to experience a different culture. But hope. Hope is often what spurs them on.

Hope is often the overriding factor in most of life’s major decisions. It can be found at all life’s twists and turns. At crossroads in our lives we look for its signpost. As we enter new relationships, contemplate a marriage perhaps, start a family, or look for a new job, new home and so on we look for it, find it, and take it with us. We may pore over all the facts in our possession and weigh up the risks involved in making big decisions. But we almost always make our choices with a measure of hope that is just as important to us as what we already know.  Hope is vital. It is a pathway we must tread, though it may make us vulnerable.

Hope is the reason I write.

The pathway I now follow is not the one I was signposted to. Eight years ago, on discovering at my 12 week scan that the baby I was carrying might have Down’s syndrome or some other genetic condition, doctors pointed me in the direction of another pathway. Society also pointed to it and still does. They said I should follow the road that will get me out of here. One, they told me, would be the best for me, and for my unborn child. A pathway that would lead me to a place where I could simply try again. They saw no hope for this child, only suffering and misery, leading to death sooner rather than later. They looked only in one direction. No one told me about the other pathway, the one I am now on and which I had to find for myself. They didn’t give me a choice, though they claimed they were. This pathway isn’t easy, I’ll admit. Yet it is a pathway signposting hope. A pathway filled with many people from different walks of life. Some of those people saw it and chose it, others found themselves on it unexpectedly.

At times, the terrain is rugged, challenging and exhausting. It’s at these times you can quickly come across others on the path who know how to find a way through. People who can steady you as you climb over the stiles or tell you the best places to find help or rest. And though the ground beneath your feet may at times feel rocky and unstable, the view is breathtaking. The beauty to be found along The Way is what keeps you going. Always changing, always something new to marvel at, be thankful for and draw strength from.  For all the challenges it is still a pathway you are glad beyond words that you discovered.

For any woman and her partner who is being signposted in only one direction by doctors, or society or even their own personal prejudices (and I had lots of those, believe me) please know that there is another way. A crossroads has more than one sign. Step aside, look behind whoever or whatever is in front of the signpost and realise it also points in another direction.

It points to another Camino.

A highway of hope.

For lived experience of what it is like to bring up a child with Down’s syndrome check out these websites and meet others who have discovered hope in similar situations:

Positive About Down Syndrome

Wouldn’t Change A Thing

 


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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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Abracadabra

 

Magic photo (2)

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.