Living with Down syndrome: Sarah’s story

By Rachel Williams

21 March is World Down syndrome day.

As older parents, Cally and Nigel Ward always knew the risk of having a baby with Down syndrome. But not once did it deter them from creating the baby of their dreams.

Their baby, Sarah, is now 12 and is an integral member of the tight-knit family of three. And they would never change her for the world.

“When Sarah was born, I was nearly 40 and my husband was 52, so we are very much older parents,” Cally explains.

“Having Sarah definitely keeps us young. We joke we will never be headed for the retirement home, as we are still on the school run!”

The couple chose not to have any invasive testing during their pregnancy as the outcome made no difference to them.

“Even knowing it was a chance, when Sarah was delivered I immediately saw she had Down syndrome and was shocked,” Cally admits.

“Sarah was born by emergency caesarean just after midnight at Easter, and the first 24 hours are very hazy for me – it was all quite dramatic.”

Cally says soon after they arrived home from hospital they were visited by another mother with a 2-year-old child with Down syndrome – and so began their journey
of support from the Down syndrome community.

“It was pivotal in us accepting Sarah as our daughter, who just happened to have Down syndrome, rather than Down syndrome defining her,” she says.

“There comes a point where your own family cannot support you in the specifics of having a child with special needs and you need your DS family to help you find your way.

“If you’re having a bad day, someone else completely understands and has perspective.

There are parents ahead of you on the journey who offer great advice. We really couldn’t do it without them.”

Sarah didn’t walk until she was two years old but the family hasn’t let delays define her. They instead remain thankful she hasn’t experienced any major health issues, given around 40% of children have some form of concern around their heart.

“I learned as time went on that milestones are achieved when you get there, and you can’t rush it,” Cally says.

“Sarah understands virtually everything that is said to her, which is called receptive speech. Her expressive speech, where she chooses to speak, is still developing”.

She has a vocabulary full of nouns, but struggles to construct a sentence. We work on it every day. We have the most amazing speech therapist who has been a part of Sarah’s life off and on since she was born. We don’t stress about it. It will come.”

Cally’s concerns for Sarah’s future revolve around when she and Nigel are no longer able to support her.

“Sarah will face a time in the world when we are not around, and that used to wake me up in a cold sweat at 3am. But the advent of the NDIS has gone a long way to creating a vision for the future where Sarah will be supported.

“The biggest focus for us in the coming years is in forming friendships, as her friends will become her family. The chances are she will live in a semi-supported environment with other friends with intellectual disability and that together they will be a strong, tight-knit group where they combine their different skills and resources to care for each other with some support and guidance.

“We hope she makes the sorts of friends and bonds that will support her and enable her to live a meaningful life, contribute to society and be happy – which is really all any parent wants for their child.”

For those who may be about to start navigating the journey, she offers this simple reflection.

“When Sarah was small, I would hear other parents saying that they wouldn’t change their child for the world, meaning change the Down syndrome. At that stage I was still coming to terms with Sarah’s diagnosis and I really didn’t understand what they meant. Now I get it. Now I wouldn’t change her.

“Down syndrome is part of who she is. She is strong. She is uninhibited. She lives in the moment. There is much to learn from her and if she didn’t have Down syndrome, she wouldn’t be Sarah. So, accept and celebrate and move forwards always with what is possible and positive in your heart, not with fear and apology.”