Updated: Feb 17, 2020
I met Madam R and her husband Encik S some years ago at a social service agency. At the time, Encik S worked as a school-bus driver, while Madam R was a home-maker and skilled seamstress who took in tailoring commissions from neighbors to supplement the family income.
A hard-working couple, they upheld family above all else. When Madam R gave birth to her first child, a boy, it was apparent even to her that he was not a normal baby. Although full-term, his limbs appeared stunted and frail. It came as a jolt to learn that he was congenitally blind as well.
However, Madam R and her husband were proud of their little baby, and from the moment Encik S laid eyes on him in the maternity ward, he was smitten by his son’s jet-black curly hair and sweet smile. Their hearts were captivated and little Johari completed them. Initially it was hard as he required all Madam R’s time and attention, plaintively crying when it was chilly as his stricken limbs would go numb.
In the years to follow, the couple went on to have 5 more kids. When Madam R went in for a routine examination while carrying her second child, she was asked to consider abortion, as the fetus’s development seemed anomalous. Madam R, being a devout woman, mentioned to me that it was never an option for her to end a life simply because the baby’s development was not consistent with what was considered ‘normal’.
I remember at the time having mixed feelings about this; on the one hand there was the ethical aspect and I respected her for her staunchly held views. Conversely, I questioned bringing a child into the world who at inception already had a string of defects to contend with.
Johari who was already a toddler when his sister was born (also blind and mentally challenged), was according to his parents a chubby and cheerful little boy. I was overwhelmed when Encik S pulled out his wallet and proudly displayed snapshots of all 6 kids. It was one of those multi-leaved wallets, and I couldn’t help feeling that he was indeed a wealthy man as it bulged not with dollar notes, but rather a makeshift album of memories.
Each time Madam R went into labor, she ensured that she never revisited the same medical facility twice for fear she was a ‘marked’ woman. She had good reason to be wary, as each time she added to her brood, the baby would be born with something amiss. Each time she would be advised to speak to an expert on family planning. Each time she chose to move on.
She and Encik S had both come to expect their babies to be born with some kind of defect. If they wondered why, they did not question their fate. It was the ‘norm’ for them, up until baby number 5 came along. Healthy in every respect, his arrival was accompanied by a lusty cry and a voracious appetite to match.
Iskandar, now a grown man and recently married, adores his siblings and idolizes his parents for their unstinting love and support despite the odds. I met him recently quite by chance when I happened to bump into the entire family at a night-market in my housing estate.
Later, over drinks at the neighborhood kopitiam, his proud parents regaled me with stories of his callow youth, while this handsome and solemn young man listened indulgently. At the first lull in the conversation, he remarked how growing up, he’d look on as his mother and father struggled to put food on the table and school them.
His four elder siblings all attended a special school, but rather than keep them there to board for the entire week, his father would fetch them home after day-lessons, sending them back in the morning.
His mother would ensure their uniforms were spruce and ironed for the next day. Madam R cut in at this point to add that only her kids wore a green uniform rather than the standard orange one. This was to differentiate them from the boarders. Iskandar, eyes shining with respect, hugged her and I felt a lump in my throat. I had honestly never known such devotion.
The baby of the family, Jun, 17, also mentally challenged and both hearing and visually impaired, shows a great fondness for music and finger-painting. She is also very attached to Iskandar. Even his new-bride, Lisa, joked, ‘inseparable’, rolling her eyes in mock despair.
I was curious how she felt marrying into this unique family. Lisa who struck me as a practical and no-nonsense person had this to say, ‘Marry a man marry his family, right? But seriously life is a gift, everyone, even the less fortunate, have a right to be here. At the end of the day, looking after them and caring for their needs can be tough, but I truly believe we are better human beings for it.’
In the face of what may seem like adversity, many may label Madam R and Encik S ignorant and foolhardy. Their mutual choice to defy the odds and raise a family of children with multiple defects, albeit one, may seem irresponsible and even a recipe for disaster.
Personally, I salute Madam R and Encik S. Their cheerful outlook belies a stoicism and deeply engrained spiritualism that has carried them through the years. Their story is one of hope and inspiration and causes one to reflect on the premium we put on human life.
(All names have been changed to ensure anonymity)