Susanna Chong: Seeing My Special Needs Child Through God’s Eyes
When Susanna Chong experienced intermittent bleeding during her second pregnancy, doctors urged her to undergo genetic testing. They were concerned that her second child would be like her firstborn, who was diagnosed with multiple disabilities as a baby and has not been able to walk or talk since.
However, Susanna firmly refused, deciding to stick through the pregnancy without these medical screenings.
“ If God wants me to go through it again like how I did with my firstborn, I will be able to do it.”
Her youngest son, Kuan Yi, has now grown into an active and healthy 11-year-old child.
Speaking to YMI from Kuala Lumpur, Susanna chuckled as she recalled this experience, “I have absolutely no idea why I had such boldness, but somehow the Lord has given me this surge of courage in my heart.” And indeed, she has come a long way since the birth of her first son, Kuan You, who is now 19 years old.
Back then, Susanna and her husband were six years into their marriage and yearning for a child. Well-meaning friends had suggested that she plead with the Lord for a child, but she dismissed the notion, believing that God would grant her a child if He wishes to.
But one day, on the train to work, she sensed the Holy Spirit asking her if she was willing to dedicate her child to the Lord. After sharing this encounter with her husband, the couple prayerfully agreed to do so.
Five days later, Susanna found out she was expecting.
The couple were excited to find out what God had in store for their son, thinking that perhaps their son might be called to be a missionary. With this in mind, Susanna wanted to prepare and do her best for God. At that time, she was working at the bookstore Kinokuniya, and so bought tons of books on prenatal care and pregnancy to learn as much as she could on childcaring.
Nine months later, Kuan You was delivered smoothly. However, at about the two-month mark, he started having acid reflux and throwing up, as often as 88 times in 24 hours. In the months that followed, Susanna noticed that her son was not hitting the usual milestones, such as responding to their calls and putting on weight. By the fifth month, a specialist finally diagnosed Kuan You with brain damage. Susanna and her husband were then told that he will not be able to talk and walk like normal children. Kuan You was officially diagnosed with cardiofaciocutaneous (CFC) syndrome at 17 years old.
“My world came crashing down when I heard the news. I was at a total loss,”
said Susanna, who teared up as she related the painful memory. She then quit her job to care for Kuan You, but also started to isolate herself. She would constantly weep during mealtimes, even hiding her tears from her husband, whom she knew was going through an equally hard time himself.
This went on for a couple of months, until a call from her older brother woke her up.
Worried that she had been shutting herself away from the world, her brother pointed out that Kuan You needed her as he was unable to care for himself. Now 10 months old, Kuan You weighed only 4kg and was reacting poorly to loud noises, sleeping as little as 45 minutes at night due to his condition.
Looking at her son, Susanna decided at that point to face the situation head on, by going for counselling and doing whatever it takes to support Kuan You. And every morning, while taking Kuan You out for a walk, she would tell the Lord of her struggles, and the Lord would comfort her and show her His strength, and so gradually drew her out of the darkness.
“It was truly by God’s grace that I did not slip into depression,” said Susanna. “I was in the deep valley, but He walked me out of it step by step.”
The turning point came in March 2012, when Susanna went to Taiwan to observe a special needs ministry. She was blown away by how well-accepted special needs children were in Taiwan and by the heightened awareness of special needs within the community. Five months after her return to Malaysia, Susanna started a special needs group (宝贝班) at the invitation of her local church pastor. It began as a small gathering, but the church supported her by providing use of the church premises and helping recruit volunteers. They made the group open to everyone, including non-Christians.
Emulating the special needs children camp in Taiwan, Susanna also started joining hands with other special needs experts and parents to organise annual camps to cater to families, Christian and non-Christian, with children who had different disabilities. As many as 40 families could join every time and learn from experts and other families how to better care for their children.
Through her involvement, Susanna saw how these camps were often a game-changer for the families, many of whom carried a lot of unsaid hurts and pains on their own as they felt no one could understand them. There is also often shame in what they are enduring, which often made them retreat further from the outside world.
“These parents started to realise that they are not alone. It also changed how they viewed their child, seeing them not as cursed but blessed, and helped them see how they can use God’s love to teach their child.”
As the camp enters its 10th year, Susanna is heartened to see how it continues to bring more awareness of special needs across Malaysia, beginning with the 100+ volunteers who were recruited for the camps and have become more aware of the challenges the special needs community faced.
The Lord has done transformative work in Susanna’s life through her ministry to the special needs community. She soon began stepping onto the pulpit to share boldly about Kuan You and how God has taught her about His unconditional love as she learnt to love Kuan You unconditionally.
“I used to dislike people staring at my son in the mall but 10 years on, it doesn’t bother me anymore. I am very proud to be his mother and have no qualms bringing him out,” said Susanna. “I learnt to see that this is God’s special plan for Kuan You, me, and my family.”
Susanna urges parents with special needs children to not give up and to take a bold first step in seeking support for their kids. She hopes to show them that in God’s eyes, they are no different from all other children, even if they have different abilities and strengths. She also wishes to encourage parents with the thought that special needs children have a relationship with God even if they can’t see it.
“When God’s Spirit speaks to their spirit, something amazing happens that we might not know or see,”
said Susanna, who added that God has given Kuan You a hearty laughter that would light up the room and cheer up any gloomy atmosphere.
Ultimately, as Susanna affirms, children are God’s gift and they belong to Him. Just last year, Kuan You was warded for two months and in critical condition due to epilepsy. This episode reminded her that Kuan You is a special gift from God who has been dedicated to Him. This meant that she had to fully let go of her son into His hands.
Susanna said that she does not know when Kuan You’s time will be up, given that he already superseded all expectations by living till 19 years of age. Nonetheless, she also firmly believes that the 19 years of Kuan You’s life have been well-spent, as he has lived every day as a witness of the Lord. Although she worries about Kuan You’s future and what would happen to him should she depart from this world earlier than him, she decided to bring this worry to the Lord.
In turn, the Lord has asked her: “What do you see when you see me?” After pondering for a while, Susanna replied that she sees.
“God then told me that this is Kuan You’s future, full of faith, love, and hope. . . this is the assurance He gave me, and I need not worry about his future.”
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