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.
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.
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.
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!