My Daughter With Down Syndrome Appreciates Keeping the Christmas Lights for Longer

This year we waited for the Christmas trees and decorations to be pulled down. Prompted mainly by our youngest child’s response last year when we took the decorations down on New Years’ Day. Hazel does not yet understand the why’s and wherefore’s of Christmas; she just embraces the magic of all she sees. Christmas lights make the top of her list. Last January she sat forlornly staring at the empty space where our tree had been. This went on for days afterwards. She sat and solemnly wondered where on earth it had gone. Why had the lights gone out?

I resolved to do better for her next time. So this Christmas we went for it. Tree up by December 1st despite being told by some it was too early. Lights, lights and more lights. Christmas lights mean more to Hazel than any present. So much so that a few days before Christmas we were treated to an absolute feast of lights by an amazing charity, Give Them A Sporting Chance, that so generously took us on an all expenses paid trip to see the Festival Lights at Longleat, providing us with our very own nurse and extra pair of hands. We were able to literally overdose on a Christmas sensory wonderland of lights! It was utterly magical. Hazel’s face, as she stared up at a 100-foot Christmas tree that lit up in every color on the spectrum was a picture! Literally, all her Christmases came at once.

A day we will never forget.

Back at home, our humble little Christmas tree did not lose its appeal for Hazel even though she had seen a much bigger and better one on our special day out. It’s not looking its best, I have to admit. Not because the needles have dropped — we have yet to brave a real tree; it’s fake all the way here. No. Many baubles and trinkets that started off carefully spaced around the branches are now on the floor — either pulled off or kicked off by Hazel in her fascination with the tree. Branches are bent and sticking out in strange directions. The angel is still sitting proudly on the top as Hazel’s reach isn’t quite that far yet, but it’s only a matter of time. I refuse to bow to popular opinion that says I should take it down. Just as I refused to take any notice of those who said I was putting it up too early.

Popular opinion perhaps, but it’s my choice.

And so the lights remain.

Hazel sees in that tree something the rest of us don’t. She would happily stare at it 365 days of the year, I’m sure. She is mystified why it has to come down. She’s got a point. All that excitement, all that expectation of just a few weeks ago. Preparations seem to get earlier and earlier. Some houses in our street were decorated in November! And yet, just a few short weeks later, it seems most people can’t get rid of their decorations fast enough. Put them away, forget about them. Move on. Tidy up.

Hazel sees something in Christmas that most of us don’t. She doesn’t fall for the same trappings as we do. She has no expectations of what should or shouldn’t happen. She cares little for the John Lewis Christmas TV ad and has no excitement about hanging up a stocking on Christmas Eve. She sees no reason to be sad after Boxing Day when all the presents have been opened. She feels no sense of disappointment, as many of us do — that Christmas promised so much but delivered so little.

She sees only lights. The colors. The sparkle. The joy.

I wish others could see things the way Hazel sees things. I wish parents who are given the news that their unborn baby has Down syndrome could see things differently, too. Some do, but many don’t. The excitement of expecting a baby is quickly replaced with fear. I know. I was one of them. I wish they could see things as we now see them. The lucky few.

Instead, they perhaps understandably, give way to the popular opinion that bringing up a child with Down syndrome is a huge problem to be avoided at all costs. They may think it’s their only viable choice.

It isn’t. It really isn’t.

For them, the lights go out and the tree is taken down. Tidied away. As if it were never there.

I wish they could see what Hazel sees.

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I’ll be right beside you dear

Snow Patrol

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Getty image by ANGHI