Downright Joy

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


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Tango

I read a remarkable story recently that a friend shared with me, about a group of dancers in Buenos Aires who were learning to dance the tango. Nothing unusual there; the tango being synonymous with Argentina of course. These dancers, however, took far longer than most to learn such an exotic and complicated dance; up to ten years as opposed to a more usual single year. These dancers had Down’s syndrome.  A remarkable story of determination, patience and perseverance that led some of those dancers (or artists as their instructor rightly prefers to call them) performing to audiences across Argentina and literally moving them to tears.

Yet it was not their achievements that stood out for me, remarkable though they were. No. It seems there was another reason why it took so much longer for the group to learn the intricacies of the dance compared to most. A reason that had nothing to do with any physical limitation or impairment.

Simply, whenever the music stopped the dancers would seize the opportunity to move around each other, chatting, hugging and generally socialising with one another. So much so their instructors had quite a job refocusing them on the task in hand!

And that got me thinking.

How wonderful. How utterly refreshing and uplifting.

A group of people who love to communicate. With each other.

Learning the dance was important, very much so. But the friendships, the connections that were there to be made more so I imagine.

It is said that people with Down’s syndrome have difficulty communicating. Their speech maybe impaired or delayed or even non-existent perhaps.

Parents, educators, medical professionals all agree that Speech and Language provision is vital for a person with Down’s syndrome. And of course, it is. I don’t deny that for a moment.

And yet.

The more people I meet with Down’s syndrome, the more I am convinced that they are better communicators than the rest of us put together. They are not often constrained by convention or etiquette or old fashioned British stiff upper lip. They rarely look at the clock and feel pressured by time. They are free to be themselves. So they are.

I just don’t have the time is a phrase you will rarely hear from a person with Down’s syndrome. Yet it’s a phrase that many of us can be heard saying on a daily basis.

I need some ‘me time’ is another; in a world where we fight to carve out time for relaxation. So many of us under stress to breaking point.

Is it ‘me time’ that we really need? Is it more time even? Or is it that we no longer make time for one another.

Perhaps we would do well to look at the lives of the very people society has so often shunned; people with Down’s syndrome. To look at people deemed to have communication difficulties and learn from them. Allow them to teach us, not the other way round. Allow them to show us how to come together in the midst of what we strive for and listen to each other, talk with each other, make time for each other.  Show us how to truly communicate with each other through whatever means we have.

However long it takes.

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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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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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Wait for me

Wait for me…

I’ve never been very good at waiting. As a child, if you gave me a Christmas or birthday present before the big day, I’d be itching to know what was inside. Prodding and poking it until I’d eventually worked out exactly what was concealed. I couldn’t wait.

It was the same when pregnant with both my children. Boy or girl, I wanted to know. I didn’t need to know, I just wanted to. For no other reason than my curiosity got the better of me. I admire couples who choose not to know the gender of their unborn baby. They have a level of self-control that evades me totally.

But having had two children, both with additional needs, I have had to learn, really learn what it is to wait.

“Wait for me” is a phrase often heard in our family. My eldest child M, recently formally diagnosed with another condition – Dyspraxia (DCD), uses this phrase the most. With good reason.

You see, for her, a simple walk with family or friends means twice the effort.

What most of us able bodied do with relative ease is more challenging for her. It’s easy to overlook the work she has to put in to keep up the pace.

So she reminds us.

Wait for me.

Her friends and peers are supportive, but sometimes they, quite understandably and naturally forget; running on ahead in their excitement. Leaving her behind.

Wait for me.

Just the other weekend, we found ourselves staying in the beautiful Welsh/English border countryside with friends.

Outdoors obviously called for some exploration.  Not the easiest of terrain for anyone with mobility issues! So, to see her very close (and particularly agile) friend hold back and help her negotiate a steep grassy slope, hand in hand, made my heart sing.

The friend waited.

She didn’t have to of course. No one would have blamed her for running on ahead, doing exactly what children do.

The friend valued my daughter and was prepared to put her own agenda to one side.

Valuing each other is something increasingly missing in our society. Really valuing each other I mean.

Putting the other person ahead of ourselves. Seeing their worth and valuing them for who they are, however different they may appear. Going at their pace, looking for ways to help them move forward; however much that may slow us down. Not leaving them isolated or abandoned.

The friend made a choice to value. That choice made all the difference; to my daughter, and to me.

Nearly seven years ago, when doctors told me my unborn baby might have Down’s syndrome or another  condition, I chose to wait. I chose not to have invasive tests that would tell me for certain if that was the case. It wasn’t easy to wait. I won’t lie – part of the reason for not wanting to know was that I was in denial about even the possibility of having a child with Down’s syndrome. Part of me hoped that it was all a mistake and everything would be “fine” in the end.

Wait for me.

Hazel, my youngest, is now six and a half years old. She loves life and most of all she loves and values people. People like you and me.  People.

I waited for her.

She arrived and our lives were undoubtedly turned upside for a while.

She patiently waited for me to come to terms with her extra chromosome.

I am eternally glad I waited for her.

Waiting for her has taught me more than anything about the priceless value of human lives. … hers, mine, yours, theirs.

I hope that women really do get a choice when it comes to the new prenatal screening tests (NIPT) being introduced across the NHS. I hope that choice actively includes supporting women choosing NOT to screen if they really don’t want to. Supporting them instead to wait. Supporting their choice, instead of pressuring them to ‘choose’ termination. There are far too many real life examples of the latter happening to women.  I know, I was one of them. That’s not choice.  There is another. And it’s a choice well worth making, I am certain of that.

There is real value in choosing to wait.

Wait for me.

#equallyvalued

#dontscreenusout


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Laugh Out Loud

What makes you laugh? I mean really laugh. Out loud. Guffaw. Face-achingly so.

Slapstick humour? A pie to the face? Or a slip up on a banana skin? The sort that only happens in cartoons….except when it happened to my husband a few years ago, and I’m still laughing.

Or perhaps it’s wit. Great British sarcasm or irony. An evening on Twitter can provide an endless source of amusement, especially in the field of politics, if that’s your thing. And as for US President, Donald Trump…his surname alone provides great joy and laughter for the eight year old in my house.

For my younger daughter, Hazel, with her extra chromosome, I really don’t know what makes her laugh. All I know is, she does. Often.

Laugh. Giggle. Snort. Belly laugh.

She somehow missed the memo about suffering (you know – the one given out with the advice to pregnant women about their risk of having a baby with Down’s syndrome.) But what is she laughing at or about? I genuinely don’t know ninety percent of the time. It’s a mystery. Lately, she’s been waking up giggling. Laughing, alone, in her cot bed. At what?

No idea. But it triggers more laughter. It’s contagious. One by one, we go down with the same condition. We just don’t know why.

Often, she’ll start laughing at other random moments of the day. Really laughing. Again, I have no idea why. There are no visual clues. Nothing funny has happened. No slapstick or custard pies to be seen. Nobody has fallen over or stubbed their toe. No one has made any rude noises or said the word poo. No one has told a joke – even if they did I doubt she would understand a word of it, and our jokes aren’t usually that funny!  And, as she has very little speech, it’s not as if she can tell me what’s so funny.

Share the joke Hazel.

There are, of course, many occasions when we can see the reason for the joy.

Her older sister can be guaranteed to extract laughter from her in that special way only siblings do. The bond is tangible and strong. Clearly, her sister missed that memo…you know, the one about how the siblings will suffer.

Then there was the time recently when a dear friend came to visit and joined in with the bathtime routine. Much hilarity and joy as our friend – who just so happens to make people laugh for a living – introduced a song and a dance to the proceedings. Laughter like we’d never heard coming from the tub.  You really know how to extract the laughter from her, say I. It’s kind of what we comics do says she.

Extracting the laughter. That need, sometimes, to go after the joy. To find it, work for it and revel in it. Life is hard, we may forget to laugh and not experience its benefits.

According to one study: Laughter is a powerful antidote to stress, pain, and conflict. Nothing works faster or more dependably to bring your mind and body back into balance than a good laugh. Humour lightens your burdens, inspires hopes, connects you to others, and keeps you grounded, focused, and alert. It also helps you to release anger and be more forgiving.

In Hazel, the laughter has just been there. I haven’t had to try too hard at all, though I sometimes wish I knew what or who was extracting it! I often pray that she will be surrounded by Angels, seen and unseen. Only now, I wonder if God has assigned her to the safe keeping of the heavenly host’s comedy division – after all, someone’s making her giggle when no one else is around!

Hazel laughs. She also cries. She experiences a whole range of emotions. She knows pain and she does know a degree of suffering, I won’t deny that. In a day of laughter and giggling, like today, there has also been pain and discomfort as she went through yet another feeding tube change. She cried. I cried. How I long for the day when she no longer needs a tube in her stomach to keep her alive. This week alone she has three hospital appointments, none of which will be a walk in the park, for her or me.

Still she laughs. And we laugh with her. Far more than we ever did before she became part of our lives. Far more than we ever cry.

The risk of laughter…side splitting, face aching, snort inducing laughter is never far away. It seems Hazel is way ahead of most people without an extra chromosome on so many levels. She does joy rather well. Joy inspite of pain. Joy alongside pain. Joy triumphing over pain.

For any expectant parents who may be reading this and are faced with this risk, let me be clear. The stakes are very high. Joyously so.

It’s a risk definitely worth taking.

#dontscreenusout


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Consider the Tortoise

Pets.

I’m not a fan of them, as those who know me well will testify.

Brief forays into rabbit or guinea pig ownership as a child were enough to convince me that pets were not for me. A fear of dogs from an early age led to a general avoidance of all things four legged, furry or winged.

They’re just saying hello are words that, quite frankly, make me cross. Leave me alone. I won’t annoy you, so please don’t annoy me…. has generally been my motto around other people’s beloved pets, with one or two exceptions.

But I am fascinated by the adoration and reverence afforded to our nations pet animals. Cats, dogs, hamsters, rabbits, guinea pigs, stick insects and the like.

Why? Why do people go to so much expense, time and effort for these creatures? Surely their life would be easier without them? Just think of the vets bills. And what about the commitment? The lack of freedom when you’ve always got to find someone to feed the fish or put the cat out when you are away? Or the expense of a cattery or kennels or as is most fashionable these days a pet/ house sitter. And then there’s the poo. I’ll stop there.

I don’t get it. But I do accept it.

I have no right to criticise people who are pet owners. They know the costs but they think more of the humanity of owning a pet. The benefits. The joys. All that owning that pet will bring to their lives and the life of their pet. They are not selfish people.

They get it, I don’t.

I do, however, get the desire to care for, love, receive and give affection to another. The humanity of caring, nurturing, treasuring and enjoying another being.

Consider the humble tortoise.

Once freely available and cruelly imported to this country before the law was tightened and permits for keeping them were introduced.  For humane reasons.

Tortoises make great pets according to some. They sleep for months on end, don’t need to be taken for a walk and children adore them. Oh and they happen to live for decades. They may even outlive their owners! A fact that clearly hasn’t put off the increasing number of people who now keep tortoises as pets.

According to a recent article in The Telegraph, we as a nation (UK) spent a whopping £6 billion on our pets last year. Heartless animal avoiders like me might argue that this money would better spent elsewhere. On the NHS, for example, or in our schools.

But whilst I may not understand the nation’s pet obsession, I will not criticise it. Nor will I say that this is a cost than can be avoided…“if only pet owners would stop being so selfish and think how better that money could be spent.

Yet…. these are attitudes that families of people with Down’s syndrome come across frequently, especially in the media. Worse still, expectant parents are faced with an ever increasing pressure for their unborn to be screened for the condition with the rolling out of a new pre natal screening test – known as NIPT. (Non Invasive Prenatal Test).

Why?

It’s so expensive to care for a child with Down’s syndrome.

They are a burden on society.

Well, who’s going to care for them when you’re too old?

They will outlive you. How do you feel about that?

Society is better off without them.

It’s selfish to knowingly bring a child with the condition into the world.

It’s not fair on the siblings.

Your relationship will suffer.

These are, shockingly, all real opinions that have been put to families like mine all too frequently. Not only to us but also to parents who, after hearing them from various sources, decide they can’t go through with a pregnancy that has been declared defective by the detection of an extra chromosome.

My question is this. If, as a nation we can pride ourselves on our passion for pets and place high value on their humane treatment and care – however long they live, why can’t we do that for people like Hazel? For those yet to be born?

Consider the humble tortoise. Mistreated and now, thankfully, protected. Cherished even.

Why, if we consider ourselves a humane society, is protection seemingly too much to ask for those with an extra chromosome? We appear to have forgotten the definition of this powerful six letter word.

humane
hjʊˈmeɪn/
adjective
  1. 1.
    having or showing compassion or benevolence.
    “regulations ensuring the humane treatment of animals”
    synonyms: compassionatekindkindlykind-heartedconsiderateunderstandingsympathetictolerant, civilized, goodgood-naturedgentle;

    lenientforbearingforgivingmercifulmildtenderclementbenignhumanitarianbenevolentcharitablegenerousmagnanimous;
    approachableaccessible;
    rarebenignant
    “regulations ensuring the humane treatment of animals”