In collaboration with Down Syndrome Association (Singapore), A Better Florist gets up close and personal with the Chan Family to find out more about how they love, care and struggle with caring for family members with Down syndrome.
The Chan family walked through the door sporting full Aikido gear, filling the room with laughter, chatter and a familial warmth. Meeting the Chan Family was truly a warm surprise.
Mr. Patrick Chan introduced us to his lovely family of 6. There was his wife, Lily, eldest son, Shamus, second son, Sean who was born with Down syndrome, followed by Jonah and lastly, his youngest, Enoch who also has Down syndrome.
Caring for not only one, but two family members with Down syndrome is definitely a challenge but through our conversation with the Chan Family, we could immediately tell that this is a family where ‘family comes first’.
The initial shock
Although expert caregivers now, Patrick and Lily never had a personal encounter with someone who had Down syndrome. So it came as a huge shock to them when their second son, Sean, was born with the congenital disorder.
“When we were told [Sean] had Down syndrome, it’s like our whole world collapsed. I was stunned. It was our first encounter with Down syndrome and we didn’t know anything about it, the pediatrician warned us of the worst.” Fortunately, Sean was born as a high functioning child with Down syndrome and only had a speech impairment.
Three years later, Enoch came along and he developed Down syndrome soon after birth. Enoch’s health condition was much more severe and includes a hole in the heart and severe breathing problems, so much so that he had to breathe through a tube for over 10 years of his life.
Due to his breathing problem, Enoch had suffered many close shaves with death, which was a huge pressure on the Chan Family. Patrick says, “We face a lot of challenges, especially when we travel. For example, we have to make sure we always have an electrical socket for [Enoch’s] breathing emergencies.”
Having a family member with Down syndrome doesn’t only affect parents, Patrick and Lily, Eldest son, Shamus also had to bear huge responsibilities for his younger brothers at the tender age of 6. However, Patrick and Lily are not the only who ones who take care of Sean and Enoch. Their eldest son, Shamus, also shares the responsibility of his younger brothers’ care at the tender age of 6.
Patrick recounts, “Shamus grew up very fast. When he was 6 years old, he had no choice but to handle Jonah who was born premature, with over 20 health conditions at birth, and help with physiotherapy and suctions for Enoch. He had a lot of additional responsibilities.”
Despite these challenges, the Chan family continues to strive to live each day to the absolute fullest, taking their difficulties in stride.
Coping with Aikido
Interestingly, the Chan family has found a common love – Aikido. This has helped Sean and Enoch develop their motor functions and maintain a healthy weight throughout the years. Patrick has been a martial arts enthusiast since young, and was very active in pursuing it growing up. He influenced his son, Shamus, and together they went on to learn and master Aikido and learn the way of Harmony.
Patrick explains, “Aikido is the art of harmony, it trains you to have restraint and self control and to never give up. It is not about always winning, like other martial art forms.” This focus on harmony and the spirit of never giving up is something that has helped the Chan family cope with the challenges that have come their way.
Recounting the past years of Aikido training as a family, Patrick says “Aikido has really helped my sons, in terms of their motor skills, and reactions. Without Aikido, my sons would not be as fit and alert as they are now”. This is proven true by Sean, who proudly wears his black belt.
Now a full time Aikido instructor at Aikido Tai Shin Kai, Patrick and his son Shamus dedicate their time to spreading the love for the martial art. Additionally, they teach Aikido at the Down Syndrome Association (Singapore) to help other children with the congenital disorder.
A message of Hope
Caring for children with down syndrome can take a toll on a family, yet Patrick and Lily stay optimistic and choose to see it as a “blessing in disguise”.
“It is a frightening experience when someone tells you your child is down syndrome, but it’s not really that bad. I believe that if you look at it in a positive light, you have the strength that you are not aware that you have. As a parent, you are able to love the child and you’ll learn to love your child, and he or she will bring you a lot of happiness.”
They also encourage parents who have children with down syndrome that they are not alone.
“They are fortunate at this time that there’s Down Syndrome Association (Singapore) now. Initially, we felt very alone, as we didn’t know anything about down syndrome, and had to rely a lot on ourself and our family for support. We understand that now when there’s news of a down syndrome being born, someone is sent down to the hospital to help them”
In Patrick’s final words of love to parents and caregivers out there who might be struggling to come to terms with their children having Down syndrome, he emphasizes that you should never give up. He believes that there is unfounded strength within you to raise your child with love and you will undoubtedly find happiness along the way.
“The child will bring you a lot of joy. Don’t be afraid, love them and embrace them.”
Written by: Ulric Sng