We didn’t know when I was pregnant with Ben that he had Down’s syndrome.
Two hours after he was born we were told that the doctors suspected that he had the condition. It was very upsetting and quite a shock.
We immediately worried about what that would mean for Ben’s future, for our older son Ross, and for our future as a family. I didn’t know a lot about Down’s syndrome – my mother-in-law had worked with adults with Down’s in the 1960s, so that was the first thing that came to my husband’s mind. That worried us as well, thinking about what Ben was going to be like as he grew up and if he was going to be able to be independent.
The first few months were upsetting. All the postpartum hormones and everything that comes with bringing a new baby home mixed with all my worries about what Ben’s diagnosis would mean for him.
It took me a while to come to terms with everything myself. It was almost like I was going through the grieving process for the baby that I thought I was going to have. It was an emotional rollercoaster. But as the months went on it got easier.
While we were in the hospital they gave us information about Down’s Syndrome Scotland and one of their new baby packs. The pack was hard to look at, at first. When I was feeling a bit better, I did have a look at their booklets where they had lots of pictures and stories from other families who have a child with Down’s syndrome. Some of them knew through pregnancy and some of them didn’t. It was really reassuring to read that some had similar experiences and experienced the same feelings as my husband and I were going through.
A couple of months after Ben was born I got in touch with Morag, who is a Family Support Service officer with Down’s Syndrome Scotland.
She came out to see me and just let me talk about what was on my mind and what concerns I had about the future. Morag was also able to correct some of the misconceptions I had been told about children with Down’s syndrome.
My husband and I attended one of the parent workshops at Down’s Syndrome Scotland’s offices in Edinburgh. It was quite daunting to hear some of the things we might need to do for Ben in the future but it was really good to get information about what support is available as Ben grows up.
Another thing that Morag did that was really helpful, to me especially, was find some local groups for me to attend so that I could meet other new mums who have babies with Down’s syndrome. It has been great to talk to people that get it and have experienced the same thing. There are still hard days. It can be hard to see other babies around Ben’s age who are doing a lot more than Ben is and reaching new milestones that he hasn’t reached yet.
But when Ben does reach a milestone it is so much more exciting and Ben gets really excited about it as well. We are excited to see what the future holds for our beautiful boy and can’t wait for him to reach his milestones in his own time. Down’s Syndrome Scotland are the only charity that solely focuses on supporting people with Down’s and their families.
Please support their Born 21 campaign by donating to the appeal at www.dsscotland.org.uk or text BORN21 £3 to 70070.