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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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.  

100_1783

Miss you Vic, happy birthday x

 


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Truth be told…

Words people said when my first baby was born:

Congratulations!

She’s beautiful

She’s got your eyes

So cute

Adorable

Aaaahhhh

So happy for you

So many wonderful adventures ahead of you

Welcome to the world little one

So many words, so many cliches. So many ways to express joy. 

Sshhh! Not too loud, you’ll wake the baby!

Precisely what I needed to hear, truth be told.

Just what the doctor ordered.

 

Words people said when my second baby was born:

I’m so sorry

 

So few words. Eyes averted. Hushed conversations. So many ways to express sorrow. Shhh! Careful what you say, you might upset the mother. 

Just what the doctor ordered.

But his prescription is long since out of date.

No one said congratulations when I had a baby with Down’s syndrome. 

I blame no one; I carried my own prejudices, I reflected the mood around me, to an extent I permitted it.

Yet ‘Congratulations, she is beautiful’ was precisely what I needed to hear.

 

So to any mother who today cradles a new born baby in their arms, or sits anxiously next to their incubator in a NICU; a baby that has been born with an extra chromosome…..I pray someone will hold your hand, stare with wonder into the eyes of your precious child and tell you the truth of it:

Congratulations! Your baby is beautiful! Welcome to the world little one.

Today, on World Down Syndrome Day,  I will celebrate every single glorious life, born and unborn, with an extra chromosome.

Each one profoundly beautiful.

Truth be told.


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Poetry in Motion

Butterfly poem

I’ve discovered a love for poetry in recent years. A passion awakened by hearing the late, extraordinary Mary Oliver read her poem Wild Geese’. An experience that had a profound effect on me at the time. Now, her words, hand painted, hang from my living room wall. Words that made me gasp and caused my heart to sing. Words that still do. The power of the spoken word, especially spoken by the one who crafted it,  is immense.

I’ve always imagined sharing these treasures with my children. And I’ve started to, with my eldest. I shared another poem, by the same author I worried’, with her recently. Her anxious face lit up as I read. Someone else knew how she felt. It gave her confidence. It affirmed her. She was not alone. She loves words too and is beginning to discover the sheer joy of poetry. Of words used well.

My youngest child, who has Down’s syndrome, is largely non verbal. She has very few, if any words. She may not yet have the words to say to us but our words matter hugely to her. And poetry is, it seems, a powerful form of expression for her too. The spoken word. Only the other day, I found her looking at the Ipad over her sister’s shoulder, as they watched Michael Rosen perform a poem he had written. She could not repeat a single word but was utterly captivated by his expression, his story telling and his passion for the subject – Chocolate Cake. He brought words to life and enabled her to share in his delight. Unlocking a subject she knew little about in a glorious way. There’s nothing quite like the joy of hearing a non verbal child laughing like a drain!

Words, or more importantly, how we use them have the power to unlock or close down.  As we approach another World Down Syndrome Day I see many people online spreading a message through their words and pictures of what life is really like to live with Down’s syndrome. Telling a story of hope, fulfillment and community. They do so for good reason.

All too often, the words offered to pregnant women and their partners when the subject of screening for Down’s syndrome comes up, are words that close down. Words that shut out possibilities. Words that paint a bleak picture. Words that may offer sympathy but that do not offer hope. There is no power in pity.

It’s time this changed. We know the reality. You see we have a passion for the subject. And we can tell these parents a different story. We can use words that can unlock their dreams and their hopes and their plans again. We have the words that can dispel the myths, whilst being able to acknowledge their fears; we were in their shoes once too. We have the words to give them confidence. The words to affirm them as parents who will be able to love and cherish their child regardless of an extra chromosome. We have the words to show them that their child is not going to be defined by a list of medical issues or learning disabilities. We can bring words to life. Real life. Their lives.

We want these parents to be given the opportunity to talk with or learn from families who are living lives that include Down’s syndrome. Living lives not of medical reference but of poetry that reflect the highs and the lows of bringing up a child with Down’s syndrome. We want to be able to unlock a subject they may know little about and invite them to discover for themselves the joy that is to be found in the life of a person with Down’s syndrome.

Poetry in motion. Lives well lived. 

Sadly, here in the U.K. there are no second chances for the 90 percent of babies who are detected as having Down’s syndrome in the womb. Their prospect of life is brought to an end. Discriminated against before they even draw breath.

We need to get this right. Words need to change and the voices of those who know must be heard – especially at that most critical time of screening and diagnosis in pregnancy.

Mary Oliver is famous for many words, but perhaps, most poignantly, she asked the question,

“What is it you plan to do with your one wild and precious life?”

It’s not the only question that deserves a careful answer.

 

For more information on Down’s syndrome from people who really know please check out these great resources:

Positive About Down Syndrome

Down’s Syndrome Research Foundation

Wouldn’t Change a Thing

Down’s Syndrome Association

Lose the Label

 


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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

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