Our older children, Amelia and Dugald, were aged four and two when my wife, Katy, became pregnant with Matilda. We went for the same antenatal tests we’d had with them, and the specialist said there was a high probability Matilda had Down syndrome. Our initial reaction was total confusion.
We were offered further tests immediately, but these were invasive. There was a risk of miscarriage. So we asked for time to think.
You just don’t know how you’ll feel like in a situation like that until it happens.
We didn’t know anyone with Down syndrome so had no idea what to expect. But we sat and considered everything, eventually deciding we’d take whoever we got. There was never a question of abortion, but that wasn’t down to any moral or religious reasons. You just don’t know how you’ll feel like in a situation like that until it happens, and we knew it was the right decision for us.
It’s a lot to take on board but we were surprisingly positive. We did some research into Down syndrome but didn’t go overboard. We told our parents and people closest to us, and then we just waited. When we talked about it we were quite measured; we were already aware as parents that different children have different requirements.
In the event it was a very difficult birth and Katy had a Caesarian section. My instinct was, “Yes, she has Down syndrome,” but that was the least of our worries. Matilda was extremely ill. We held her for just five seconds before she was whisked away to an incubator. She stayed there for the next three weeks.
Then, one day, her little toe moved and that was the start of her recovery.
It was terrifying. Down syndrome had nothing to do with her illness; none of her major organs were functioning properly. She didn’t move at all for the first few days and all we could do was watch her. There was talk about flying her to another hospital and we silently pleaded with her to hang in there and recover. Then, one day, her little toe moved and that was the start of her recovery. She was a real fighter – has been ever since.
The hospital was fantastic and gave us a family room so we could all be together. I rushed back and forth between there and home, where our parents were looking after Amelia and Dugald. Coming home was wonderful and set the tone – we just got on with it. Everyone was really supportive. Friends and family were like us, with limited knowledge of Down syndrome, and no-one ever said anything negative.
All the grandparents took Matilda having Down syndrome totally in their stride. Our friends were really positive too.
Since then we’ve talked to other people who did get less than positive responses. That must be so hard – hearing people say ‘sorry’ as though something terrible has happened. We were very lucky – all the grandparents were still around, and they took Matilda having Down syndrome totally in their stride. Our friends were really positive too.
We quickly got involved with Down Syndrome Scotland and when Matilda was three we decided to have a fundraiser in our back garden. I’m now a senior lecturer in music and business, but I was rhythm guitarist with the band Love & Money in a previous life; I still had lots of friends in the music business.
We’re a very musical family and Altered Images, my sister-in-law Clare Grogan’s band, came along. There were various other musicians too. It was a brilliant night and at the end, Ken McCluskey of the Bluebells said, “See you next year.” It’s now an annual event called Sandfest and it grows every year. This year it was too big for any local venues so it moved to the Glasgow Concert Hall. Both Matilda and Amelia were on stage. It’s a very special event for children and adults with Down syndrome and we all love being involved.
Matilda is a determined and classic middle child, joining in with everything we do.
That apart, we just get on with life. Katy and I decided we’d have one more child and got a bonus – our twins, Flora and Sonny, are now 11. Matilda is a determined and classic middle child, joining in with everything we do as an active, outdoor family.
She did the same activities as the others and went to the local school, which had the time and willingness to connect with her and get the best from her. She’s now at an additional support needs school which shares the same campus and facilities as a mainstream school and provides the ideal balance for her.
Katy and I want our children to be happy. It’s no different with Matilda.
Like all parents, Katy and I want our children to be happy, doing jobs they love and in good relationships with enjoyable interests. It’s no different with Matilda, although we recognise there’s a different dynamic from the other four. She’ll probably enjoy independence through living in supported accommodation.
I would love it if she could get a job she enjoys and it’s interesting to see her reaction to Amelia, who is now studying music and theatre and has a part-time job in a coffee shop. Matilda would like to do the same when she’s older and there’s no reason why she shouldn’t. Her siblings don’t see her as being different to them and she can certainly hold her own, though at times they are very protective of her. Katy and I find that comforting.
I’m surprisingly comfortable on the subject of Matilda and boys; she’s been interested in them for a few years now.
Every parent worries about their children eventually having to fend for themselves. When you have five, you’re tending to all those different needs and recognising that as adults they’ll look after each other. I’m surprisingly comfortable on the subject of Matilda and boys; she’s been interested in them for a few years now and it’s good to see her being like the others.
She’s a member of a theatre group and has been on television, including an adventure game show where she had to compete against three other children. She didn’t win but it was a great experience. And that’s what I want for all my children, including Matilda – to find a path that will engage them and keep them happy.
Also read:
