“Live it, love it, laugh at it. Embrace it.”
Every parent must know that these words aren’t always easy to live by, but for Bervyn and his 48-year-old wife Phyllis, it is this positive attitude that has helped them raise their two kids, 18-year-old Cara and 13-year-old Matthew, who has Down syndrome.
Yet it hasn’t always been easy for Bervyn and his wife to remain upbeat. After Matthew was conceived, it was discovered that he had developed a Cystic Hygroma – a condition associated with a chromosomal defect, which in Matthew’s case was Down’s.
“When the news was broken to us, we were devastated,” recalled Bervyn. “We were told that not many foetuses with this condition make it to full term and even then, we would have a Down syndrome child with physical defects and health complications.”
Despite their gynaecologist’s advice to undergo an abortion, Bervyn and his wife eventually decided to keep the baby. A routine scan done a few months later found the hygroma to have disappeared, and with that, so did all the complications that came with it. For Bervyn and his family, it was a miracle come true.
Fast-forward 13 years and Matthew is now a healthy boy, albeit one with Down Syndrome. Matthew, whom Bervyn describes as a “very loving and forgiving person”, enjoys food and loves a good story just like any other child.
However with Matthew’s condition, the challenges that come with raising a child are magnified. Communication in particular is difficult, given that Matthew is still non-verbal.
“We did a signs course to try and communicate but even then the vocabulary is limited. It’s very hard to sign an emotion. He can’t sign ‘I’m angry’, so it comes out as a tantrum,” said Bervyn.
Following a routine is also crucial in Matthew’s everyday life.
Explained Bervyn, “If you take him to a Coffee Bean or McDonalds, he’s very fixed on where he wants to sit and it’ll be the place he sat when he was first there. He can get a little upset if he sees the place taken up by someone else.”
“There was one time at McDonalds, a young girl was sitting there and Matthew just went and shoved her off the chair. The mother was in deep shock,” recalled Bervyn.
While Bervyn hopes that others can understand, he knows it doesn’t always happen that way.
“As a parent you will get protective over your own child and special needs or not, your daughter has been shoved off her chair and is crying, so that’s just one of the things you live with,” shrugs Bervyn.
Like Father Like Son
Bervyn’s easy-going nature stems from his father, whom he refers to as a “fabulous man”.
Said Bervyn, ” My father’s such a fun guy. He always brought humour to the home. As corny as some of his jokes were, he would think them out somehow and we’ll all have a good laugh. You can’t help but admire the effort he put in to try and liven things up at home.”
Along with his jovial nature, Bervyn’s dad was also a silent supporter of his five children, an encouragement that Bervyn is able to fully appreciate now that he is a parent himself.
“As a swimmer I used to wake up at four AM in the morning, four times a week to train,” recalls Bervyn. “And my dad would get up and drive me to the pool and he never complained. That touched me then. But I didn’t realize how much it touched me until I started having to drive my own children around.”
Bervyn is a busy man himself, having recently taken over the role as Director of the Office of Student Life at Singapore Management University. With work keeping him tied up, Bervyn also ensures he takes time out for his loved ones.
Weekends especially, are reserved for the family. Like his father, Matthew loves the water and they go swimming every weekend. Although Matthew is unable to swim proper strokes due to his disability, he is still able to move from one point to another.
“In fact,” laughs Bervyn, “he does it underwater. “Matthew loves being immersed in water. He loves the flow and sound of water. He can sit in front of a fountain and just watch everything. ”
Taking a leaf out of his father’s book, Bervyn is also careful not to have things get too intense at home.
“With my daughter taking her ‘A’ Levels this year, its not like she doesn’t have any pressure going through that,” said Bervyn. “I remember during my ‘A’ Level year, I was prepared to fail my exams already, because all I did was play. So why should I now impose on my daughter? It will be what it will be and God will look after you.”
A Different Perspective
Given the circumstances, Bervyn has learnt to look at things in a different light.
He views the inability to connect with Matthew as a limitation on his part, not Matthew’s.
“It’s understanding that it’s not him who has the limitations it’s actually me, it’s actually us. It’s people like us who do not fully appreciate what it means to have this condition, and therefore by failing to understand, who is the one who has the disability then?” questions Bervyn earnestly.
It’s a perspective that helps him to remember not to point fingers at others before pointing it at oneself first.
Added Bervyn, “We are the ones who have major blocks about races, about how we treat the elderly and foreigners and people with special needs. We are more disabled because of the walls we built ourselves than the people who actually have these disabilities.”
Despite everything, Bervyn has never wished for life to be different.
He said, “The amazing part about Matthew is that he’s very different from all of us. The family is different in a better way. I’m a better person for it. I’m actually a lot more patient now than I was before. So, all things happen for a reason. I’m just grateful for what I have.”
About the Author: The Dads for Life Resource Team comprises local content writers and experts, including psychologists, counsellors, educators and social service professionals, dedicated to developing useful resources for dads.
First published on 08-08-2013
Categories: Dads' Stories