by Lawrence Chong
The Bible teaches, “Be joyful in hope, patient in affliction and faithful in prayers” (Romans 12:12). Life works in mysterious ways, and though many situations can test our faith at times, it is essential to put God first in our life and trust Him to guide us through whatever situation we are in. For my wife Peng and I, God presented us with an addition to the family that changed our views on life: our second son, Wan Zen, who is a warm, loving Down syndrome (DS) boy. Initially, his condition made us confused and helpless, but we gradually understood that he is a wonderful blessing to our family.
It was early in the morning at about 4am, on 13th May, 1991. When Peng was in labour pain, we prepared to bring her to the Subang Jaya Medical Centre (SJMC). There, the medical staff took her into the delivery room and made the necessary arrangements for the delivery. At about 5 am, my wife gave birth to a healthy baby boy, who had unusually large eyes. We were overjoyed at his arrival into the world, and nothing unusual was noted, beyond one of the nurses commenting that his nose bridge is a bit flat.
A few days later, we checked out from the hospital. Both mother and newborn son was taken care of by a confinement lady. Zen was an easy baby to care for, as he seldom cried and drank his milk slower compared with other babies. Peng and I happily planned a full moon celebration for him, and we wanted to invite many of our friends, brethren and office colleagues to the Holiday Inn in Shah Alam.
However, Zen caught a fever the following day, and we took him to see a pediatrician. The doctor called us in and told us that Zen could be potentially diagnosed with Down syndrome. He could not fully confirm anything based on only observing symptoms, and said he needed to do a “chromosome test”. As there was no testing facility in Malaysia, Zen’s DNA would be sent to the Thomson Hospital in Singapore, and would take about a week to receive the results.
We were in great shock and unbelief from the news, and my wife cried immediately upon hearing it. I tried my best to console her, by saying that perhaps the diagnosis was a mistake. The next day, we made an appointment at SJMC to provide Zen’s blood sample for testing. We both felt a terrible heartache watching the nurse take Zen’s blood, and wondered why such a small, vulnerable baby needed to go through this procedure.
Waiting for the results, which took an entire week, was agony and mental torture. Many questions like “Why us?” or “Why did the doctor in SMJC not detect this?” cropped up in our minds throughout the week. My wife cried every time she saw her newborn son, and I had just started a new job in Delloyd Industries, forcing me to cope with the new work environment in addition to this worrying prospect. I often knelt down on the floor of my office to pray to God. I cried in my car alone. I really did not know what to do, as things seem so helpless and God seemed so far away.
‘D-day’ arrived, and I went to SJMC to get the report. It was confirmed that Zen was diagnosed with Trisomy 21, also known as DS. I went to see Bro. Koay at his clinic for consolation, and he gave me solace by encouraging me to take it slowly and do what is best for Zen. He also recommended his friend Dr. Ng to assist me. Bro. Koay arranged for us to meet to share and advise us on coping strategies.
Peng was devastated when she heard about the report. She wept frequently and did not eat for days. I grew worried that my wife was going through post-natal depression which would cause her wellbeing to worsen. Around the same time, my factory also encountered a serious work accident when one of the new workers lost his hand which was trapped in a stamping machine he was not supposed to attempt repairing. I was assigned to attend to the government officers from the machinery department, and travelled to and from the Klang General Hospital to visit the victim.
All in all, we were facing one of the most challenging times in our lives, and we felt lost, angry and hopeless. We desperately sought more information to help us, and every night my wife and I would engage in deep conversations. I encouraged her to be strong and to give our best to Zen, as it was unfair that he should suffer. She gradually accepted that she needed to be strong for the sake of our son, and we agreed to take care of Zen together, bringing him up while letting God guide us. Peng eventually recovered from her despair. She started eating properly and tried to lead a normal daily life.
Each month brought rather slow progress, and we lived in constant worry for Zen, as DS children have more potential health issues compared with normal children. We tried to be mentally prepared for every possibility, yet the more I read about DS, the more disheartened I felt. We decided to stop the rigorous revision and instead pray for guidance, hoping for the best.
Both of us went through many sleepless nights. Our faith in God at times was also shaken and challenged. Nevertheless, the constant encouragement we received from brethren and friends allowed us to renew our hope and trust in God. We moved forward in life, with honest hope for Zen as well as our family.
My wife was very dedicated and committed, determined to give her best attention and care to Zen. When he was eight months old, we sent him to the Kiwanis DS Centre to learn basic motor skills. We enrolled Zen in an early intervention class to train him to perform basic movements that he did not immediately learn, movements which we often take for granted. Further on in his life, we enrolled him in Special Education classes provided in government schools, first in Section 4, then in Section 9, Shah Alam.
Zen has grown up to be the most lovable child that we could ever ask for. He is well behaved, meticulous and orderly in every task he performs. He is easygoing and accepts advice when we tell him why something cannot be done or why it is not necessary to have something. He displays his love for us openly and enjoys hugging everyone. His love for us is incredible, and he will look into small ways to show us that he cares. We could not hope for more, as he truly is a joy to all those around him!
God has shown us that having a child with Down syndrome does not equate to a difficult or miserable life, and that we ought to put our trust in Him as He has a plan for all of us. As 2 Corinthians 6: 4-6 accurately states, “But in all things we commend ourselves as ministers of God: in much patience, in tribulations, in needs, in distresses, in stripes, in imprisonments, in tumults, in labors, in sleeplessness, in fastings; by purity, by knowledge, by longsuffering, by kindness, by the Holy Spirit, by sincere love.”
We do not know our future, but we know who holds it, and we should never forget that for as long as we live. “But those who wait on the Lord; Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.” (Isaiah 40:31). We have no regrets any more now that we have experienced God’s gift to us in the form of our amazing son!