We are still only beginning to realise what a gift people with Down syndrome are to the world

Written by Rebecca Boke Neely

At the Pride of Britain awards Becky Twigger and Jamie McCallum made powerful statements.

“I still have that guilt of feeling sad, and I don’t want any other parent to feel that way.”

“Everyone needs someone with Down syndrome in their life.”

Having had someone with Down syndrome in my life prior to having our child has absolutely made the difference where I didn’t have the same ‘diagnosis sadness’. Throughout our lives Scott and I both had the privilege of knowing a number of people with Down syndrome and other learning disabilities. This greatly helped how we received the news when Simeon was diagnosed at birth. The first doctor to deliver the news even asked us if we knew anyone with Down syndrome.

Those early days were still very emotional for me. Being presented with a list of associated medical conditions and being told they need to scan his heart straight away was a bit of a shock. I also needed to process my expectations for the future and the learning curve ahead. But we could still celebrate and embrace our new baby and all of our close family and friends were with us in that.

One of the great memories of reassurance for me was recalling a week spent with Eric, a friend from my church back home in America. Eric has Down syndrome, loved travelling and arranged to come to visit a friend and I in England. He was able to fly on his own with some assistance and we were his tour guides for the week. We had so much fun that week that I remember thinking I’d never belly laughed so much in my life. More than anything Eric wanted to meet the Queen and we joked about having tea with the Queen. Though the Queen had actually never in her life visited Durham where I lived, she came that week on her Jubilee Tour, walking within arms reach of Eric, as if she came just for him. That week I experienced the magic of viewing life from a slightly different perspective with someone who has Down syndrome, and that gave me hope for our future.

A lot of fear and sadness parents have is based on lack of personal experience. The message ‘Wouldn’t change a thing’ defies the assumptions of a problem or mistake and contrasts that with a big embrace. Don’t get me wrong, having a child with Down syndrome isn’t easy and it’s not the predictable cookie cutter some make it out to be. Life can be really hard at times and maybe the phrase can feel jarring in those times. Parents saying they wouldn’t change the Down syndrome even surprised me with my new baby, who I loved absolutely but wondered if he would be better off if by some miracle I could remove the extra chromosomes. More than defining every cell of his body, I now see how it makes him the wonderful, funny, strong, loving person he is. The fact that so many of us wouldn’t change Down syndrome in our children is a message many of us feel the world really needs for getting past that fear. I truly wouldn’t change Simeon, and I believe we are still only beginning to realise what a gift people with Down syndrome are to the world.