Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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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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Snowflake

My daughter is, as I write, shouting at snowflakes. Loudly, as they whirl around outside, on a bitterly cold and windy March day.

Hands raised, fingers tracing the snowflakes path as they tumble to the ground. Transforming her world. Well, the garden. And, for a little girl with Down’s syndrome who, as yet, has only a few words in her vocabulary, snowflakes make her shout!

She’s not the only one who shouts at snowflakes.

Disruption, hard work, cost.

Beautiful, intricate detail. Delightful. So exciting!

Can’t get to work. Social plans cancelled. Schools shut. Wish it would go away.

Mesmerising. Wide eyed and wondering “what is this magical show taking place outside every window?” Joyfully in the moment. This moment. Now. It’s snowing. And it’s beautiful….to her.  A Narnian landscape.

Snowflakes

Each one unique. Individual. Intricate designs. No two the same. Small, tiny even, yet, collectively, they transform the landscape.

Snowflake

A word now used to insult and/or define an entire group of people. A generation. We seem to be a society that is often intent on name calling, labeling, closing down the voices of those we disagree with or fear. Silencing them without ever trying to understand them. Holding fast to prejudiced views and opinions. Discriminating.

Beautiful words made ugly.

A society that says it is diverse, yet one that seeks to silence that which it fears or does not understand.

My daughter, who has Down’s syndrome, shouts at snowflakes. Not because she is angry with them but because she is captivated by them. Transfixed.  They are of great value to her.  She cannot take her eyes off them.

There was no snow when she was born, 6 or so years ago. Instead, the rich warmth of autumn leaves swirled around the ambulance door as nurses whisked her off into the Neo Natal Intensive care unit, her life in the balance.

Autumn colours are magnificent too. Vibrant. I wish now I had taken more time to notice them. Instead, I chose to look away and stared unblinkingly at grey skies.

Her life was fragile. Our life was disrupted. Plans cancelled. Couldn’t work. Costly. Painful.

For a while I was angry. I may have even shouted.  The words Down’s syndrome were, to me, and to my shame, ugly words. I hated them. Prejudice I didn’t know I had ran so very deep. I could barely even say them.

Until, that is, a nurse came in and said just four words to me. Four words that I so badly needed to hear but that no one (other than family) had said. Words that had been said about her older sister the moment she was born.

Hazel was nearly a week old before I heard them.

“Congratulations, she is beautiful”

Words are so powerful. Transformative. Life changing. Life enriching.

Today is World Down Syndrome Day. Today, all we really want is for the outdated and discriminatory language surrounding Down’s syndrome to change.  Language that breeds fear and uncertainty changed into language that brings hope and understanding.  Using different words. Let’s ditch the damaging discourse on Down’s syndrome. Babies, children, young people, adults with Down’s syndrome are worthy. They are of great worth, as are you and I.  They are people, not defects. They are not a ‘risk’ or a ‘problem’ or even ‘horrible’- as I recently heard of them being described by someone involved with pre-natal screening.

Change the narrative.  Down’s syndrome is not something to fear. To avoid, or get rid of.  A person with Down’s syndrome is so much more than a medical list of ‘problems’.

We miss out on the joy when we focus solely on the difference, the disruption to our plans, the cost. That one extra chromosome.

Cost, financial burden to the state….all words that have been tossed in the direction of people like me – parents of children with Down’s syndrome. As if these words have anything to do with a person’s worth?

I see a change in the landscape.

A group of mums, some of whom I am proud to know as friends, have caused a bit of a snow storm themselves this week. They have shown, in one short, beautiful (and now viral) video that “Down’s syndrome” are not ugly words. They are words of great and extraordinary worth. Words that speak of love and joy and a life worth living. These women and their unique and beautiful children are collectively transforming the landscape.

And it is a stunning landscape.

50 Mums |50 Kids | 1 Extra Chromosome

WDSD18 TS

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