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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Beautiful Brilliance

IMG_4825

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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Cheers

Cheers TV titles Screen shot

I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.

Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:

Sometimes you want to go

Where everybody knows your name

And they’re always glad you came…..

I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.

This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.

It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.

It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.

A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone special schools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.

Her upbeat answer surprised me: Oh, I don’t know!

Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.

This school is a place where everybody knows your name.

And they’re always glad you came.

Mainstream education, or indeed society,  has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.

This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.

So many joy-filled days.

Treasured memories.

Hazel’s happy place.

And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on.  We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.

I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,

 “Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”

Thank you to every single person at Hazel’s exceptionally special school.

We’re so very glad we came.

“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.” 
― Jean Vanier, Becoming Human

*Names changed for privacy.


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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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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