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Started the blog when I was a reluctant stay at home mum of two, now back at work and life is even more crazy! This blog is about combining work, home and everything else. I've two kids (aged five and three), youngest has Downs Syndrome, have one partner and no pets (the smelly goldfish went to the big bowl in the sky!)

Thursday, 17 October 2013

So, the Downs Syndrome Thing...


If you've read my profile you'll see that I have a son with Down's Syndrome. He's three, four in January, and he's called Toby.

No, we didn't know he had downs before he was born (people ask that a lot) and yes it was a big, big shock (understatement of the century), and yes it took a while to get used to the idea that his life and our life was going to be 'different'.

There was nothing in my pregnancy to suggest anything was "wrong", although we didn't actually have any testing done, just the 20 week scan. The night he was born... well it was a great labour, very fast, but when he was born there was just something in his wee face that made me ask "do you think..."

A midwife checked him, then another one, then a more senior one, and then they said they were going to get a doctor.

At that stage we pretty much knew. The doctor followed the steps in the "How to Break Bad News" textbook, sat on the bed, took my hand, said he was beautiful, but... but there were some features that led her to believe he might have downs.

You cannot prepare yourself for hearing that. Honestly, it was like a bad dream. I really did keep thinking I was going to wake up. But obviously it wasn't. And then we had to tell people, a stunned phone call to my mum in the middle of the night, a tearful one to my sister in the morning and two more tearful ones to my best friends later that day. And then a text to everyone who was waiting to hear, we'd had a boy, he weighed 7+lbs and he had Downs syndrome. The texts that came back were interesting, I know people didn't know what to say (I still, strangely ,would not know what to say to someone in the same boat) but most people got it right.

We were (are) very lucky. He has no heart issues, no feeding issues in fact his health is really good. We left hospital two days later.

And what now, three years later. Well, for us it's been a pretty easy ride. We sort of decided without discussion that it wasn't actually going to change our lives and he was just going to have to fit in. Yes, we have appointments - physio, speech therapy and occupational therapy. And eye appointments and thyroid tests and bi-annual reviews and appointments to get special shoes. But so what. And yes we maybe had to work a tiny bit harder to make sure he got to go to a mainstream nursery, but we weren't manning the barricades or storming the BELB! Yet!

And what of Toby? Well he's hoot. It is no exaggeration to say everyone loves him. Imagine being able to say that? Everyone loves me.

He's just like other boys, he loves TV, can be very, very stubborn, loves to sing and dance, has his meltdown moments. But we love him, and he's ours and he's changed our life a bit, but only for the better.

And just check out that photo. He's gorgeous. Takes after his mum obviously!

1 comment:

  1. Elizabeth, he is absolutely gorgeous. Thank you for sharing your post. My eldest has mild CP so I understand all the appointments etc but believe they are special children who have so much (most of the time!) patience with what they have to tackle in life. She smiles at everyone and doesn't understand why some people don't smile back at her, like Toby, she seems to warm peoples hearts. Little gifts they are x

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