We chatted to Lorraine O’Brien about her story, in support of the Down Syndrome Centre.
“It’s almost a year since Lilah was born. This time last year, if you had told me where I would be today I don’t think I would have believed it. I never thought my life would involve having a child with a disability – it was something that just didn’t happen to ‘people like me’ – but there she was, this beautiful, peachy-skinned little angel. And she was mine.
And she had Down syndrome.
I’m not going to pretend I took it well; I didn’t. I was heartbroken. In my mind my whole world, as I knew it, had ended. On the other hand, there I was feeding and changing this new baby because she was mine and, although everything had changed, everyday life carried on.
The first time I saw Lilah I had already been told by the medical team they suspected she had Down syndrome. All I could think about was how beautiful she was. When I looked at her, I couldn’t believe this was happening. I loved her so much but I was so sad. Sad for the future she might have, sad for the limitations I believed she would have, sad she wasn’t like the ‘other’ kids. I was sad for us as a family too. What would this mean for her brother? Down syndrome hadn’t been part of the plan.
But, as each day passed, eventually all I could see was Lilah. The Down syndrome took a back seat and I told myself that, whatever challenges we were going to face, we’d do it together. Lilah is my little girl and I wouldn’t change her for the world. There is more to a person than a diagnosis – to judge her on this would be missing out on everything she has to offer. She is incredible, at four months she had open heart surgery and recovered like the superstar she is.
When it comes to our family, Lilah is just one of the gang. Though everyone obviously knows that she has Down syndrome, to us, she is first and foremost our baby girl or, as her big brother likes to call her, “our princess”. We dote on her and, in her short ten months of life, she has opened our eyes to so much.
It’s early days, but I would like Lilah to attend mainstream school when the time comes. I think it’s important for children like her to be included in society. After that – just like all parents – we just want Lilah to be happy, and have a full and happy life where she gets the opportunity to reach her full potential. And with all the support our family gives us and through the services provided in The Down Syndrome Centre we can give her all the help she needs to do this.
My final wish is that she follows her own path. At ten months-of-age she already has bundles of personality, I want this to shine through.
When I discovered The Down Syndrome Centre, it was exactly the kind of place I needed. As a new parent of a child with Down syndrome, I wanted to reach out to other families in the same situation to see how they were getting on.
“To see what life with a Down syndrome child was like, I suppose.”
My first trip to the centre was to attend a baby massage course where I met four other mammies, all with babies of different ages. Each baby was different, each beautiful and each full of potential. We were just normal mothers but, because we had a connection, we could speak openly about the specific issues affecting us. I found this so helpful.
We joined the centre’s Team 21 Tots class (Trisomy 21 is the most common cause of Down syndrome), a weekly parent and baby class in the centre. It’s a fun place to be where our children can learn and have fun, and the parents can catch up too. Above all, it’s a place of enormous hope, where each child is celebrated, seen as an individual and seen for their abilities not their disabilities.
This year, I’ll be one of the parents leading the Mini Marathon group, calling for people to ‘Be a star for our little stars’. We need to raise funds so that the centre continues to be a place of support for families like ours.
To join Lorraine in running the Mini Marathon for The Down Syndrome Centre visit, click here.
