When Ng Kui Choo gave birth to her daughter, she learned that her baby had Down syndrome, and immediately she felt a sense of soul-crushing hopelessness. But somewhere along the journey, Ng saw not the end of the world, but the beginning of a new, beautiful world.
A beautiful, caring heart
Ng Kui Choo recalled it vividly, as if it happened just yesterday — “I had just given birth to Ping, and was waiting to be wheeled into my ward when my husband, who was leafing through my baby record file, turned to me with an ashen face paler than mine in my post-natal state, and uttered the 2 words that changed our lives forever.
“Down Syndrome ..? Our baby has Down Syndrome?”
Remembering it all too well, Ng described her feelings then as though the “whole world had collapsed.” She was 38 when she gave birth to her fourth child Tan Yii Ping.
At that time, Ng’s three older children were aged of eight, six and four respectively. “At that point in time, I was crying almost every day wondering why me? What have I done?”
May 19, 1998 was the turning point for both her and her husband. Ng picked herself up and told her husband, “Don’t worry. Everything will be fine. We will carry on. I will devote all my time to Ping.”
Being a devout Buddhist, the young Ng initially accrued Ping’s condition to her karma. “Why me? Was it something I had done?” Now, however, as she reflects upon through the journey with Ping Ping, she has come to the realisation, “I grieved initially, but upon retrospection, It was our good karma that had brought Ping into our lives — she has enriched our lives by teaching us the meaning of compassion and patience.”
The gift of Ping into their lives has made a lot of positive impact on each and every one of the Tan family. For Ng, it inspired her to contribute to the society through her never-ending efforts to improve the lives of children with special needs through The Society for Parents of Children with Special Needs’ (Pibakat). Her greatest pillar of support is her husband, Tan Yoo Heong, who is also very actively involved in NGOs that look into the interests of children with special needs.
Apart from that, when Ping was born, she also impacted Ng’s older children to be independent and resilient. “Seeing Ping’s condition, they grew up overnight. They had to take care of themselves as I had very little time for them.”
Little Ping’s condition
Children with Down Syndrome tend to have a lower immune system, and Ping was no exception. According to Ng, after the age of 4 months, Ping fell sick often and was very susceptible to upper respiratory throat infections. Due to prolonged and frequent infections, she developed enlarged adenoids and had to be hospitalised a few times because she turned cyanosed every time she cried.
“I had to sit in my armchair all night to cradle her upright so that she could breathe properly and sleep better. Night after night, it was torturous.”
Because Ping had to struggle for every air intake, she eventually developed pectus excavatum, a condition whereby her chest caved in. “She was always struggling to breathe, and it was very heart-wrenching and agonising watching her fight for every breathe,”
Ping, as is typical of children with Down Syndrome, had very weak muscle tone. Despite following an early intervention program run by Pibakat, she only took her first at the age of four.
In those days, there was only one speech therapist serving Sarawak, and Ng admits that if she had put in more effort, Ping could have been better off in terms of speech. She can communicate her needs but cannot converse well. “But even with her limited vocabulary, she can still convey a beautiful message. Comes to show that you do not have to be speak eloquently to convey a message.”
Ping has a beautiful caring heart, evident since young even when she could barely communicate. When she was four, she offered the seat where she put her bag to some Welfare officers who came to visit Pibakat. Four-year-old Ping offered the empty seat to visitors to her school. “Her teachers in Pibakat told me that when her classmates cried, she consoled them by saying “tell mama” (meaning to report to her mama that they were bullied.) ”At times, she would cry when she saw her classmates crying.
Growing up, Ng said that Ping was a gentle and compassionate person. “Even our fierce Rottweilers listen to her.” The disorder also gave Ping the ‘wants’ to lead a simple life through her everyday set routine. “One of the challenges that Ping’s family faces is that she is very slow in carrying out daily activities like eating. “We like to joke that Ping teaches us about mindfulness and appreciating life thorough by slowing down. Ironic, because I am always on fifth gear whilst Ping loves taking her time.”
Another challenge is that Ping sticks to routine. Ng admits that she did not realise this initially, and it is a bit difficult to try to make her adapt now.
“Now it is difficult to make Ping change her routine — for instance, she would spend a long time singing or role playing before bedtime. Then she takes her time brushing her teeth. We tried to break the routine by setting rules. We are making a little progress and will get there eventually.”
Despite the challenges Ping faces from her disorder, her mother proudly mentioned that Ping is independent. The proof to this was her daily job at Pibakat’s laundry project where she load the washer, then the dryer and then fold the clothes.
Initially, Ng’s concerns were focused on the challenges of her daughter being diagnosed with Down Syndrome. “During her first year, I could not talk about Ping. I broke down every time I talked about her.”
Somewhere along the journey, Ng saw not the end of the world, but the beginning of a new, beautiful world. “Over the years, with the support of family, good friends and colleagues, I grew stronger, and I realised a lot of things. There was a lot to be done for parents of children with disabilities as well as the children themselves.”
She became (and still is) actively involved in raising public awareness, running early intervention programmes for children with disabilities.
But now, as she is getting ready to retire from her 34-year-old job as language lecturer in a local university, her concerns have changed. While Ping’s physical needs are well taken care of, Ng expresses concern over Ping’s emotional needs when her parents are no longer around
“Ping was very close to my mother. When my mother passed on, Ping saw our tears and could comprehend that something was wrong. I explained that grandma would sleep forever. She was sad and she seemed to understand it in her quiet manner.”
She hugged her mother and said ”Sad no more” by way of comfort.
Now, whenever Ng or any other family member falls sick, Ping will worry, and try to reassure them (or is it herself?) “Sick no more.”
In three words, she communicates that she does have her worries.