Being cool. That's the trait that Edmund Lim hopes he portrays right to his two young sons as a father.
“My own dad was a cool dad. He left a lot of independence to us to be who we are,” he shared.
The 44-year-old wants to be like his late father, who he remembers as sharing plenty of laughs when he and his sister were growing up.
And these are pretty positive values to impart, as we find out that Edmund is a father in a rather unique situation.
He has two young sons, Jaden and Branden, who have healthy appetites for life and enjoy spending time with their “cool dad”.
The only difference is, the younger Branden has been diagnosed with spinal muscular atrophy (SMA)
, a rare genetic neuromuscular disease.
SMA affects the nerves controlling respiration and movement which meant that six-year-old Branden needs support to sit and stand. He also needs continuous help from his parents, along with medical care and various therapies, from physiotherapy to support from a cough assistance machine.
When Branden was born, doctors told the couple that his disabilities would only get severe over time.
Being told such huge and life-changing news will impact any parent, and Edmund takes on this responsibility by adopting his father's positive and easygoing nature.
Edmund said the values his father shared and how he led his life reflected the elder Lim's character.
“He was the centre of crowds and a person that brings cheers to other people's lives.
“He felt that it's not necessary to structure your kids upbringing so much, just provide values.
“To us he wasn't naggy, he was a cool dad.”
Edmund added that he wanted to be the same for Branden and Jaden, and laughingly admitting that he was a “little naggy.”
Edmund's jovial character does offer an insight to how he and his wife, Yap Sook Yee, 43, cope with raising Branden and Jaden, each requiring completely different attention and care.
“We find that the simple act of smiling gives us the energy to do so,” added Edmund, who is from Petaling Jaya.
And by energising themselves with positive vibes, the couple find the time and motivation to set up and run their homegrown movement called weCAREjourney in 2015. weCAREjourney raises awareness about SMA and other forms of rare diseases.
The organisation began as a portal, mimicking the TripAdvisor model, offering a directory of disabled and therapy facilities that were rated by the community.
Over time through feedback and use of the site, the Lims redesigned the workings of the movement and decided that it worked best as a vehicle to run campaigns.
Edmund, who works in the finance field, explained that using the word “smile” as an acronym helps define the work that they do and gives him and Sook Yee the drive to serve others.
“S stands for support, M is to move on, I to interact, L is Live and E to empower,” he said.
Their passion for the work is driven by the principle of wanting to do as much as they can, while they can, for the movement weCAREjourney.
Father and sons time
Having to give special attention to Branden does remind Edmund of his duties to care equally for both his sons.
“I don't know whether it's consciously or not, we make it a point and make it a habit, to also focus on Jaden on what he needs as much as possible,” he said.
Often in cases where one sibling has a rare health condition, families often overlook, not intentionally, the other siblings due to time and resource issues.
Jaden, in this case, has a special bond with Edmund. The father and the older son have what they called buddy trips each year.
“Initially we always wanted to get Branden involved, but now it's fine for me to go with Jaden to do stuff that Jaden likes.
“He is old enough to know that some things we can't bring Branden along, so why should we deny him the opportunity (of doing his own activity),” Edmund added.
Nine-year-old Jaden enjoys nature and birdwatching, so father and son go on hiking trips and take part in Raptor Watch events or explore various sites during out of town drives. Meanwhile Branden gets a “Sunday walk” with dad.
In fact, Branden isn't excluded from any activities at all, as he uses painting as a form of therapy.
When he was two, he couldn't raise his arms over his head, and painting was a way to help him improve arm strength.
He is an avid painter with mum, often his paintings are used to raise funds for weCAREjourney or to help other low income families facing similar challenges with rare diseases.
Juggling work and weCAREiourney with Sook Yee, alongside caring for his sons does all add up, so how does this father do it?
He doesn't take the credit himself, always speaking of Sook Yee, and the two boys, as well as extended family members and their network of friends.
“We focus on the act of smiling. (You have to admit) no one is their own army. You need that tribe of people that will keep you going.
“Plus, you've got to live a little and can't be too serious. Take the mickey out of yourself once in a while and have that belief that you can make a difference.”