Downright Joy

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


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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But his prescription is long since out of date.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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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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If the cap fits

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“But what do you do all day?” Is a question I am sometimes asked and, well, I don’t like to be impolite but, seeing as you asked (and even if you didn’t) I will try to answer it.

Today I went into battle. On the front line. I pushed back into enemy territory. My efforts were resisted but I persevered.  I took ground that was being strongly defended. I claimed it for my severely Dyspraxic child who needed a service that was being denied. Today I was brave, but I was scared.

Today I was a Soldier.

Today I changed a broken feeding tube, in an emergency.  I bathed an open wound and I administered yet another new medication. Today, as every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a Nurse.

Today I learnt all about Proprioception and how understanding it could really help my Dyspraxic child. But first I need to learn to say it. Today was enlightening.

Today I was a Student.

Today I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found Platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. Today was magical.

Today I was a Storyteller.

Today I gave my child a haircut at home. A trip to a hair salon too distressing for a child with sensory issues. Today my home became a salon. One with toys and television and iPads. Today I felt like I achieved the impossible.

Today I was a Hairdresser.

Today I trawled the internet. Endless articles on Down’s syndrome, on Dyspraxia, on Sensory Processing. Today I drank a lot of coffee.

Today I was a Researcher.

Today I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. Today I had fun making toys that would help my children make sense of the world around them.

Today I was an Inventor.

Today I attended another appointment to discuss the needs of my children. The sixty something appointment this year. Yes, honestly. I’ve counted. Today I was early.

Today I was an Advocate.

Today I wrote a blog highlighting the discrimination faced by those with Down’s syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome.  I tweeted my MP. Today I got angry.

Today I was a Campaigner.

Today I watched my anxious child find new confidence in an activity she had previously not coped with. Today was brilliant.

Today I was a Cheerleader.

Today I lost count of the phone calls I made, the emails I sent. Today I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. Today I despaired.

Today I was an Administrator.

Today my glass is half empty. Yesterday, it was half full. Tomorrow is a new day.

Today I am thankful for the glass.

Today I met with Trainee Doctors and told them about life with a child with Down’s syndrome. Today I busted some myths.

Today I was a Teacher.

Today I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. Today I tried hard not to cry.

Today I was a Wrestler.

Today I cradled my child as she drifted off to sleep under anaesthetic for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.  Today I could not do any work.

Today I was broken.

Today I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals. Today I thought my heart would burst.

Today I was the happiest woman alive.

I am a mother to two amazing children,  both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!

 


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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.

 


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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

 

 

 


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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