When Sarah Valiquette-Thompson looks at her bright-eyed son, she doesn’t see a child with Down syndrome.
“He’s just Harvey,” she says with a smile. “He’s his own person. He’s a beautiful, healthy little baby. Yes, he has an extra chromosome, but he’s just Harvey.”
That is the message the Orillia city councillor and her family want to share today on World Down Syndrome Day.
“This is a huge day for our community and the message we want to send is around inclusion, acceptance – that all people are beautiful,” she says. “It’s important to kind of retract that judgment, to detach that label, to recognize everyone is unique and embrace everybody.”
For Sarah, husband Ian, and their daughter, Hailey-Jane, 2, it hasn’t all been sunshine and roses, however. When Valiquette-Thompson was five-months pregnant, she found out, through prenatal screening, there was a chance the baby growing inside her would be born with Down syndrome.
When that diagnosis was confirmed, after a roller-coaster month of testing, the young couple was overcome with emotions that ranged from fear to dread.
“It was complete devastation,” Valiquette-Thompson conceded. “I don’t know how to describe the emotion … it felt like everything around me blacked out. I felt numb. Not knowing anything about Down syndrome, I immediately started thinking about the health of my baby, what it means, would he have all of these health complications? It was the fear of not knowing.”
Added to that toxic mix was the feeling the local couple experienced during the final phases of testing in Toronto.
“I can remember feeling the baby kick inside of me and a doctor sitting across from me saying you really should evaluate why you would keep this child and evaluate the life you will have,” says Valiquette-Thompson, fighting back tears. “We would walk away from those conversations without any hope. It was an emotional mountain we barely climbed.”
Fortunately, their local family doctor adopted a different approach. “He was extraordinary, so supportive, texting and calling … he was unbelievable,” she said. He talked to them like they were “real people, not patients” and explained to them about the advances that have been made, how a 25-year-lifespan has become a 60-year lifespan.
“He said if Harvey has vision problems, we can get him glasses, if he has hearing problems, there are solutions,” she explained. “He also said he would be in the delivery room, that he would be Harvey’s doctor … it made all the difference.”
Despite that, there were dark days dogged by fears of the unknown. In the midst of the darkest of times, Ian called her and said she was needed at R Cottage, their family-run restaurant in Washago. One of the staff members had called in sick and a celebrity was coming to dine.
“I was dreading going in; I just didn’t want to be around anyone at that point,” she says. “Lo and behold, this celebrity arrives and she has a daughter with Down syndrome. It was just the most amazing thing.”
Ian and Sarah got a glimpse into their future. “I looked at this strong, beautiful woman, looked at them just living in the moment and seeing how happy they were living their life, smiling … it was, at that moment, miraculous to me.”
It proved to be a turning point. From that moment forward, they were able to see their days ahead through a different lens. Today, Harvey is five months old, happy and healthy.
The couple has worked hard to educate themselves and have begun to advocate for those with Down syndrome. They encourage everyone to wear wacky socks to mark World Down Syndrome Day in recognition of how each of us are different yet can be happy and beautiful in our own way.
They don’t plan to stop there. Valiquette-Thompson has met with Simcoe North MP Bruce Stanton about bringing forth legislation on prenatal testing; she says the legislation is outdated and needs attention.
“Ian and I are at that point where we’re back at full strength and we’ve found our voice,” she says. “Harvey was born into our family for a reason and we’re working on a movement on the political side and we’re going to focus on being with our family and on advocating and helping other families.”
Valiquette-Thompson said she is willing to talk with other families going through similar journeys and she suggests those with questions or concerns visit dsdiagnosisnetwork.org or check them out (DSDN) on Instagram and Facebook.
But today, she said, is a day to celebrate their decision to bring Harvey into the world.
“All I can say is he has brought so much joy into our life and I feel like he has taught my husband and I to live in each moment. We look at life completely different now,” she said. “He’s a beautiful, little healthy baby. I want people to know it’s not scary, it’s beautiful.”