The Upside of Down Syndrome

The Upside of Down Syndrome

“This is her journey, but she’s constantly changing us as well."

With World Down Syndrome Day on 21 March, we should be celebrating kids like Josee, not pitying them.

World Down Syndrome Day

World Down Syndrome Day: A great time to celebrate our kids, not pity them. | Picture: supplied

When the ultrasound technician announced to Joelle Kelly she had a one in two chance of having a baby with Down syndrome, the mother of two broke down in tears.

World Down Syndrome Day: Mum Shares Her Experience

“I desperately wanted a third child, but I hadn’t expected this,” she says. “I was really devastated and terrified, and I felt like my life was over. They were very dramatic and negative feelings.”

When she went to pick up her daughter Tallara, 11, and son Max, nine, from a friend’s house after the scan, she couldn’t contain her emotion.

“My daughter just looked at me and asked, ‘Why are you crying?” I said, ‘The baby might have Down syndrome.’

“At the time, the kids went to school with a little boy who had Down syndrome, so they said, ‘We love this little boy. Why are you so sad about our baby having it?’ That really threw me. I was really shocked at how much of a negative reaction I’d had, and I had to stop and think about where it had come from.”

Joelle took to the internet to do some research about Down syndrome, but she found very little up-to-date information because most women who received a prenatal diagnosis were encouraged to terminate the pregnancy.

“We were offered termination right up to 23 weeks,” she says. “And we hear horror stories all the time of women well over 30 weeks being offered it as well.”

Fighting for their baby

Joelle and her husband Lewis weren’t willing to give up. A week after their first scan, they had another one at a private imaging centre and they were told their baby had hydrops, a condition in which large amounts of fluid accumulate in the organs and tissues.

They were encouraged to go ahead with a test known as chorionic villus sampling (CVS) to confirm the diagnosis of Down syndrome, but they were told that their baby was likely to die from heart failure within 48 hours of the procedure.

Thankfully, the worst never happened and an 18-week scan revealed the fluid was gone. Joelle and Lewis were overjoyed, but the next step was to come to terms with the diagnosis of Down syndrome.

“We decided it was just going to be a different blessing and crossing each bridge as we came to it became our motto,” says Joelle. “I found a mother of a boy with Down syndrome online who said, ‘Look for joy in your pregnancy, take each day as it comes and try to connect with this baby,’ so we just tried to do that. It’s a process – you have highs and lows.”

The couple didn’t know how their loved ones would react to their decision, so they decided to set the tone for the pregnancy.

“We said, ‘We’re going to be OK’, and we asked people to support us. Our friends and family rallied around us – everyone was extremely positive, which really helped.”

The Upside of Down Syndrome

Picture: supplied | World Down Syndrome Day

It’s a girl!

In January 2013, Josee Hope came into the world – 10 days overdue and weighing a very healthy 3.9kg.

“We were so thankful she was alive and we could celebrate that she was finally here,” says Joelle.

Although Josee had a few difficulties with breastfeeding and weight gain in the early months, her dedicated mum stuck to it and Josee started to thrive. With the help of speech therapy and physiotherapy, she was soon hitting milestones at her own pace.

Once she knew her own little girl was doing well, Joelle was determined to help other mums who received a prenatal diagnosis of Down syndrome.

“I didn’t want other women to feel as alone as I did when I was pregnant,” she says. “So I started a support group on Facebook. I support about 200 women from all around the world at the moment.”

“It’s really interesting seeing other women come in with that same fear and anxiety and telling them, ‘I promise you, it will be OK’. Then they come back and post photos of their babies and say, ‘I just didn’t know I’d love them like this’.”

The Upside of Down Syndrome

Picture: supplied 

Changing people’s perceptions one word at a time

In an attempt to break down the social stigma surrounding Down syndrome, Joelle tries to raise awareness about the negative language used to describe it.

“A lot of people say ‘Down’s kids’ or ‘Downsies’, but that just clouds people’s perceptions of Josee’s capabilities.

“I encourage people to use person-first language. We don’t call her a Down syndrome child – we always call her a child first, then we say ‘with Down syndrome’. My husband has asthma, but I don’t call him my asthmatic husband because if I did what mindset would you have about him? It’s the same for Josee. The diagnosis is part of her, but it isn’t her.”

“World Down Syndrome Day is a time when our t21 community can come together and celebrate the lives of our children and the bonds that our community has.”

The Upside of Down Syndrome

Picture: Supplied | World Down Syndrome Day

“It’s also a time to reflect on the barriers that individuals with T21 still face, particularly within work and schooling opportunities. Although there’s never been a better time for a person with T2 to be born; with advancements in medical care, technology, mainstream education and work life programs, the negative stigma surrounding T21 is still in our society. Our wish for World Down Syndrome Day is that all children are accepted and included, no matter what their diagnosis or condition. Diversity is life.”

Now four years old, Josee attends Kindy and enjoys reading, dancing and playing with her siblings, Josee is a ray of sunshine in the Kelly household.

“We just love watching her grow and develop,” says Joelle. “This is her journey, but she’s constantly changing us as well. I don’t think I have low expectations of her, but she still breaks every expectation I have.”

Follow Josee’s journey on her Facebook page:

The Upside of Down Syndrome

Also read: Adorable Boy Sings To His Baby Brother With Down Syndrome

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