Downright Joy

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


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When every day is your birthday…

Virtually every day for the last month I have listened to the same song.

That’s not surprising you say…over Christmas the shops are filled with Slade or Paul McCartney endlessly singing the same festive tunes.

Not in our house.

Every day, almost without fail, Hazel, who is largely non-verbal and has very little language as yet, has been singing.

The same song. Over and over.

Happy Birthday

Actually, it’s goes something like this:

“Appy budday dooo yoooooo

Appy budday dooo yooooooooooo

Appy budday dooo Ayzool.

Appy budday dooo yooooooo.”

Every time the lights on the Christmas tree were switched on, we heard it.

Every time a candle was lit to freshen up the house after a meal, we heard it.

Every time a visitor called by to offer festive greetings, we heard it.

Even in the Doctor’s tinsel clad waiting room, poorly and struggling with yet another infection, we heard it.

Hazel has no idea what Christmas is all about. Not really. That will come in time. She did not write a list for Santa, or even hang up her own stocking. She had little interest in opening presents – finding it all too overwhelming, instead shuffling off to find a quieter space. Not even a morsel of Christmas fare passed her lips, as she happily ignored all food yet again, content to let a tube keep her alive.

But she knew it was special and that was enough for me.

Like her birthday, last September. Special. Not that she understands birthdays either. But she remembers being celebrated with a special song. Hazel understands being special.  Not in the way some people use the term ‘special’ either – for all children are special. With or without an extra chromosome. 

No.

She is special because she is Hazel. She is planned and purposed. She is loved and wanted – but even if she weren’t (God forbid) she would still be special. She is special because she is a human being, made in God’s image.  She is special because.

Last year I, along with many others spent time and energy campaigning for the unborn – in particular those who are found pre-natally to have Down’s syndrome. We argued that their lives are worth living. That their lives are as worthy as yours or mine.

I would be dishonest if I didn’t admit that, at times I felt crushed by the campaign. I’m sure others did too. In reality, it was the attitudes I came up against that brought me low on more than one occasion. Imagine having to justify your child’s existence – I did when a journalist asked me to explain why it was better that Hazel was alive and not an abortion statistic.

I have found it difficult to even write about these things since the campaign reached its height – around the time of Sally Phillip’s excellent documentary A World Without Down’s last October.

I’ve wanted to hide away from the reality of living in a world that is so hostile to people with Down’s syndrome. I have felt it personally. I have felt the hostility and the hatred. I have felt it for my little girl.  I have cried many tears for Hazel and the discrimination she faces from those who think our society would be better off without people like her.

We’ve kept our decorations up a little longer than usual – for Hazel. She loves them so much. And, as she sang Happy Birthday to herself this afternoon, she reached me.

Again.

So at the start of a New Year I want to celebrate my little girl with an extra chromosome.

She celebrates herself every day after all! So why shouldn’t I?

Why shouldn’t the world celebrate with her and all those like her? I will not hide away and stick to damage limitation. I will stand up and fight for her and for all those who have no voice.  When she sings the one song she knows so well, I will not correct her and tell her it’s not her birthday (even though it isn’t!) Instead, I will sing it with her, as often as she wants to.

Happy birthday Hazel – I will celebrate your very existence and that of your equally special sister each and every day!

blowing-candles-downright-joy

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Turn Back The Clock

 

May is nearly upon us and, for me, this means one of my favourite things. Chelsea. Not the football club but the Flower show. Not that I’ve ever been. I’d love to, of course, but the demands of caring for a young family with additional needs prevents trips like that at the moment. One day I will go. One day.

For now, I’ll settle for a week or so of high definition images via the BBC and Mr Titchmarsh & Co.  Pure indulgence. A week of dreaming that my humble little back garden will somehow also be transformed into a panoply of perennials, a cornucopia of chrysanthemums and cordylines.

It never is.

I have dandelions growing in my conservatory roof.

I’ve yet to hear or see the humble dandelion get a mention at Chelsea. I’m not sure they’ve ever even heard of one.  After all, it’s a weed. Not wanted. No place for it. It would spoil the garden. Ruin it, even.

The dandelion is hated. People wage war against it, so much so we spend millions of pounds on products aimed at destroying it.

The dandelion will grow anywhere. Except where it has been eradicated.

Yet the dandelion is also loved. Childhood games spent telling the time with a dandelion clock. So perfectly formed, so intricate, so gentle and so beautiful to look at. Then, as the seeds are blown, delightfully, by a childish puffing of cheeks, they are carried effortlessly away on the breeze. Landing somehow, somewhere and there, they begin to make their own mark in the world. A world that doesn’t really want them. Wishes they weren’t there. Will do all in its power to eradicate them.

When do these same children learn to hate something they once cherished? When does fear replace this childlike acceptance?

I don’t know the answer but somewhere along the road it happens.

Fear.

And so it is with having a child who has an extra chromosome.

Fearful.

At least it was for me, and, given the statistics on how many terminations take place in the UK following a diagnosis of Down’s,  I think it is fairly reasonable to make the assumption that fear has a huge part to play for many who find themselves in the same position as I did.

I was afraid of the dandelion.

I was afraid of how it would spoil my garden. Take over. Damage. Ruin its perfect appearance. Make gardening harder.

Of course, my garden was never perfect, but I strived to make it so. I could not let the dandelion spoil this dream.

I was affronted by this ‘intruder’. I believed the lie. That the dandelion was harmful. That the dandelion was ugly. That the dandelion had no place in my garden.

But I could not eradicate it even though I was told it was possible. Easily arranged. For the best.

And, I am forever thankful, that my fears although real, were never strong enough to take hold of the situation. They were never allowed to go to the garden centre and buy the weed killer. Though, for a while, I am ashamed to admit, I envied those who could.

I began to love the dandelion. I began to cherish its beauty.

And, over time, the shame I had wrongly felt at having a garden with dandelions was replaced by a sense of awe and wonder at this beautiful plant. I discovered its beauty, its benefits and its immense joy. I love how it pops up anywhere, it’s deep vibrant yellow flower forcing its way through the most hardened of soils and singing in the sunlight. Enjoying life. Enjoying being there. Dandelion experts even tell of the health benefits it can bring. Who knew?!

The dandelion is not supposed to be here. Or so you would think.

I wish I could turn back the clock and re frame the dandelion.

It deserves it.

The dandelion makes me smile.

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