Downright Joy

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


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Framed

Today is my birthday. It’s a big birthday.

Its ten years since my last big birthday. The biggest birthday I’ve ever had, though there was and is no zero on the end of it.

Ten years since I woke up in hospital, 29 weeks pregnant, surrounded by monitors and hooked up to machines. A nurse stationed at the foot of my bed. I’d spent a week in Intensive Care as doctors fought to save not just my life but that of my unborn baby. One by one, my major organs gradually shutting down. My husband told to expect the worst; doctors didn’t know if either of us could be saved. I was hours from death.

Ketoacidosis- a condition I’d never heard of, had crept up from nowhere. We had been enjoying our last holiday before the baby was due. Brixham; a pretty little fishing village on the Devon coast and a place I’ve not been able to revisit since, such are the painful memories it evokes. The holiday had to be cut short. It’s a condition that is fatal if not immediately treated, brought on by poorly managed or untreated diabetes. As I’d had no previous indications of diabetes in my pregnancy it was a mystery why I became so ill. So unusual, that doctors later asked my permission to write a medical paper on me for their journals.

I woke up and the doctor wished me happy birthday.

For ten years I’ve always considered it a terrible birthday. On my discharge from ICU, I was offered counselling- such was the potentially traumatising effect of a week in ICU.  I declined. I felt no need – I had survived and so had my unborn baby. I had something wonderful to look forward to and that was enough.  Over the years I’ve pondered on the experience more so. Only recently discovering, for example, that the weird hallucinations I had whilst there were as a result of the cocktail of drugs being pumped into me. Perhaps if I’d taken up their offer I would’ve known this.

It’s taken ten years for me to celebrate that birthday. May 7 2009 is the day I got given my life back. It’s the day I knew I was still going to be a mum.

It was the start of the next ten years.

Ten years that have brought much joy into my life as well as difficulty. Ten years that have brought formal diagnoses including Down’s syndrome, Dyspraxia, and recently Autism into my life through my children. Diagnoses that, at one time, would have filled me with fear but that have instead brought me into the most amazing community, and given me two unique children who, along with the challenges, bring me indescribable joy.

There is much talk in the Down’s syndrome community about changing the narrative around a diagnosis. A well-worn phrase that I wonder may be past its sell by date. Too clichéd perhaps; I’m not sure. Yet the desire behind it to see a story told differently is one I applaud. For so long, pregnant women have been told of the ‘risks’ of having a child with Down’s syndrome. These are well known and documented. A quick google search will (sadly) bring up all kinds of fear inducing scenarios for a new mum; many of them based on outdated and frankly incorrect information, using terminology long since thrown into Room 101 by those who know better.

A snapshot of my own experience in the last ten years shows there’s much to be done. Ten years ago doctors fought to save the life of my unborn baby at 29 weeks. A little over two years later and doctors and midwives in the same hospital were telling me I should consider aborting my second unborn child even up to birth if I wanted.

Why? All because of a possible extra chromosome and the fears surrounding it. One life worth preserving, the other disposable according to their rule book. Though I am thankful to the doctor who, after initially offering me this ‘way out’, apologised saying he wished he didn’t have to but that he had to ‘follow strict guidelines’. The stats bear him out. Over 90% of babies found prenatally to have Down’s syndrome in the UK are routinely aborted.

The story of Down’s syndrome played out in many hospitals and clinics is a story that needs to change because it’s not the whole story. Parents are given only a snapshot of what life is really like with an extra Chromosome. And that snapshot is often out of focus. Framed in such a way that obscures the joyful reality of loving a person with Down’s syndrome.

It’s not lost on me either, that my first child – the one doctors fought to save has since had more than her fair share of challenges; diagnoses of conditions we didn’t know she had in utero. Yet no one ever suggested terminating her life. This will change if the proponents of pre-natal testing get their way and more conditions are targeted in the womb. So much they will be able to tell you and yet so little.

Ten years ago I almost died. A horrible, dreadful experience.

Ten years ago I was given a chance to live.

Ten years ago the doctor stood beside my bed, a week after he said I might not live, and wished me happy birthday.

Ten years since he and other skilled professionals saved my life and that of my baby. Ten years since many people prayed for me. A few came to ICU and prayed over me.  Some are no longer here themselves. I’ll always remember my dear friend Vicky (whose birthday I shared) getting past the tight security that would only let family or clergy in. Vicky was not one to ever let protocol get in her way and she came to hold my hand, praying as I drifted in and out of delirium.  I don’t understand why she is no longer here and it hurts my heart, but I smile at that memory.

So I will reframe my birthday of ten years ago. I won’t change the story by wiping out the painful, difficult, anxious, terrifying parts. But I will celebrate all that was good and all that began that day. I will stop remembering it in mournful, self-pitying tones but rejoice in the new life it began.

I will look at the whole picture and put it in a new frame. Some stories are worth telling from a different perspective.

Happy Birthday to me.

Dedicated to Vicky Taylor.  

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Miss you Vic, happy birthday x

 


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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!

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