Wednesday, 21 March 2018

Looking back

I didn't know anyone with Down's syndrome. I hadn't met anyone. I hadn't been around anyone. I didn't know anyone who knew anyone with Down's syndrome. All I knew was what I'd seen, huddles of hooded anoraks trudging one behind the other supported by a bossy carer or two.

That was until 1992.

Emily was born in 1992 but Emily wasn't the first person with Down's I met. When Sheron was six months pregnant we were invited to a work colleague's home for a garden party. Lots of people were there, including my colleague Harry's daughter. She was six years old and had Down's syndrome. I'd had no idea. She was adorable and I remember charging around the garden with her on my back. We had a great time. That was when I realised that Down's syndrome itself is merely a condition that affects us more than the person with the condition. It didn't seem to bother her at all and my pre-conceptions were blown out of the water.

Then in August Emily was born. And I thought back to that day in the garden and I wondered at such a coincidence.

John, the minister of our church, came to visit us in hospital, with his wife Jill. We hadn't realised but Jill is a twin. Her twin's name is Alison and Alison has Down's syndrome. I wondered at such a coincidence.

We received tremendous support from Harry and from John and Jill. What an amazing thing it is to receive support from people who can show empathy and compassion because they have some idea of what you need and when you need it.

The following year I was given a transfer to work at a different branch of the bank I worked for. This was disappointing as I had received great support from Harry and I knew it wouldn't be the same. My new line manager was called Nigel. I didn't know him, although I had heard of him. It turned out that Nigel's daughter had Down's syndrome. And I couldn't help but wonder at such a coincidence.

Looking back I am amazed that just at the right time, just when we needed it, we received support from three families who guided us through the choppy waters of those first few months, as we navigated the way ahead into an uncertain future. I can't help but be amazed that they just "happened" to be there. I fully believe they were woven into our lives with precision on a tapestry much, much bigger than I could possibly comprehend. 

All these years later I'm still in touch with John & Jill. Alison is beautiful. If you read to the very end you'll be rewarded with a photo. 

Jill: "I still remember my first cuddle with Emily and feeling how she would be ok. I know I'm privileged to have grown up knowing that a person with Down's syndrome is no different to anyone else. Alison is getting the most amazing care, they love her to bits."

Those three people with Down's syndrome were strangers to us, yet had influenced the lives of the people who would give us the support we needed. That blows my mind. And now I wonder who have we had contact with in the last 26 years who have received support, even without us knowing, because we were able to offer them some comfort and strength because Emily had first given it to us.

What a legacy these people with Down's syndrome leave, every single day of their lives their influence causes hope to ripple around the world. If you’re reading this and have just received unexpected news that you’re having a baby with Down’s syndrome or if you’re a new parent, seek out support, there’s someone nearby who has been prepared for a time such as this. You might already know them. Now what a coincidence that would be...