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It was love at first sight when they set eyes on the baby boy 31 years ago.
After trying unsuccessfully to conceive for four years, Dr Lim Boon Hock and his wife Tuat Guek were elated to finally have a child. Matthew is the couple’s first adopted child.
They could not wait to bring him home.
“He was so cute, with round, chubby cheeks,” Tuat Guek (just call me “Guek”, she tells me), an ex-school principal, reminisces. “We had no qualms about bringing him home.”
However, when Matthew was five weeks old, things took a turn.
Guek shares that over the following months, Matthew’s round cheeks started to flatten, his face took on a more pointed, triangular shape, and his head grew abnormally large. He started to take food very poorly, taking hours to finish each bottle feed and then regurgitating most of it.
“By the time we finished one feed, it was time for another,” recalls Boon Hock, shaking his head.
Matthew also fell sick often. He often landed in hospital, from whooping cough, croup or simply dehydration. This went on for a year and puzzled doctors warned the couple that Matthew was failing to thrive.
They thought that Matthew might be suffering from hydrocephalus or even AIDS.
All this caused great worry and distress for the Malaysian couple, who had to climb a very steep learning curve as first-time parents and caregivers of such a needy infant.
Boon Hock vividly remembers the fateful day they went to fetch Matthew home from the hospital in Batu Pahat, Malaysia.
The town was experiencing one of its worst floods in almost ten years.
“Of all days, it had to be that day,” says Guek. “We somehow sensed that symbolically, we had to go through high waters with Matthew.”
Bad news on bad news
After Matthew’s first year, doctors finally told the couple what they had suspected for a while – Matthew had abnormalities.
He was diagnosed with Russell-Silver Syndrome, a rare genetic condition that is associated with poor growth before and after birth.
The news hit the couple “like a ton of bricks”, recalled Boon Hock but they were still hopeful. Doctors told them that Matthew’s intellectual abilities will not be affected, just his physical stature.
However, when Matthew could not speak even by the age of four, the couple suspected that there could be something more to his developmental journey. He also did not respond when they called him and did not make spontaneous eye contact.
Further tests confirmed that Matthew had autism.
It was a blow piled on another blow. But Boon Hock and Guek tell The Pride that it didn’t change their determination to love Matthew to the best of their abilities.
In fact, they even remember the exact moment when they decided that they would be in this together with Matthew for the long haul.
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It was a day when one-year-old Matthew had to undergo yet another test.
Nurses had to draw arterial blood from Matthew, a very painful laboratory procedure.
While holding him, Boon Hock passed out briefly from the distress, as Matthew was kicking and crying in great pain — he didn’t know what was going on. Guek was far away from the procedure room at the time, as she could not bear to hear Matthew’s heartrending cries.
Boon Hock describes that experience as one of the worst moments in his life.
“We decided from there, whatever it is, we will just love Matthew,” shares Guek.
Journey of love
Over the past 30 years, that love has been sorely tested.
Now 31 years old, Matthew still soils and wets himself. He throws clothes and shoes into the neighbour’s house — the family lives in Malacca — for entertainment.
Matthew is still non-verbal, but he gets triggered by words such as “cannot” and “angry” and he would get violent — ripping off his clothes (Guek is now an expert at sewing buttons), injuring himself (like knocking his forehead on objects) or even hitting his parents.
During the interview with The Pride, he would repeatedly shut the door to the room where his parents were talking to me via Zoom, then keep knocking on the door to be let in, just for fun.
He does this frequently, admits Boon Hock with a tired smile.
Such challenges occur almost daily.
Yet the patient parents still put his welfare over theirs.
“It’s especially frustrating when I see him hurt himself and I can’t do a thing about it. At other times, I thought I was going to go berserk,” confides Guek.
“But I will never abandon him.”
People around her had tried planting that thought in her head.
“He is not your child. Just give him back lah, or send him to an institution,” they suggested.
Says Guek firmly: “Everybody wants good gifts. How about these other children with so-called problems? They are also God’s children. God has given him to us and he is ours.”
Boon Hock says he and Guek have never entertained such thoughts. Nor had they ever wished that they did not adopt Matthew.
“Even though he is difficult, we do love him. It’s just like we gave birth to him ourselves,” he says.
In fact, their challenges didn’t stop them from adopting another boy. Benjamin is three years younger than his brother, and has seen how his adoptive parents have loved them unconditionally.
One of the parenting challenges that Boon Hock and Guek face is to show Benjamin that he is as loved and as much part of the family as his special-needs brother.
“Since young, I struggled with the feeling of being ‘left out’, that somehow Matthew was getting all the love and attention,” shares Benjamin.
“I am the “able-bodied” one, the one who can do everything – how come Matthew gets all the attention, like he is valued more? I thought to myself, I want to be special too!”
Explains Boon Hock: “Guek and I have tried to show as much love and care for Ben but I guess we didn’t express enough affection to him as compared to Matthew. Because of his frequent meltdowns, we often had to hold Matthew, hug him tightly and speak in soft, low tones to calm him down.
“With Ben, we were stricter, constantly reminding him to do his chores and complete his schoolwork. It must have seemed to Ben that Matt gets away with ‘everything’, that even when he (Matt) misbehaves, he gets hugged and affirmed. Looking back, I think we must have come across as having double standards for our two boys.”
Now 28, Benjamin sees things from a different perspective. “To be honest, I still struggle with feelings of jealousy and envy at times and Matthew’s behaviour often drives me crazy. But I’ve learnt to accept him as part of our family.”
Strength to love
Boon Hock shares how he would miss Matthew when he had to travel for a teaching engagement.
“I asked myself, how can I ever miss him and all his nonsense? But I actually felt the void when we were apart.”
Boon Hock and Guek, both devout Christians, attribute their selfless love for Matthew to a higher power.
“We often wondered — it’s so difficult, how come we never thought of giving up? It must be supernatural. We could not have come up with that kind of love for him ourselves, but the fact is, we do love him,” says Boon Hock.
As much as there are extreme lows, there are also extreme highs. Like when Matthew spontaneously stretches out his arms to ask for a hug or kiss. Or when he shows signs of good behaviour, like volunteering to wash his own cup or showing remorse for giving Guek trouble.
These moments are few and precious and they help the couple to carry on.
A catalyst for good
Without knowing it, Matthew has, just by being in the lives of his parents, become a catalyst for good.
To understand his son better, Boon Hock has, over the last 20 years, dedicated himself to the field of special education and enhancing the lives of people with special needs, as well as their caregivers.
A teacher by training, Boon Hock chose to pursue early childhood special education when offered a scholarship to do his doctorate.
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He did this even against the advice of his professors. But today, Boon Hock’s work on children with disabilities in the Malaysian context and his experience with Matthew have been published in academic journals.
He also co-founded WINGS Melaka Centre for Developmental Disability in 1998, which provides early intervention services for pre-school children with disabilities and was its executive director from 2010 to 2012. The centre still operates today and has helped hundreds of children with disabilities.
“If not for Matthew, I wouldn’t have done it. My life would have turned out very differently,” says Boon Hock.
Next project
Boon Hock now runs BH Lim Special Needs Consultancy, providing screening and assessment of suspected disabilities in children and adults, and conducting parent training programmes.
He is working on his next project, the biggest one yet, called Quad E @ Gak Acres. It will be built on a five-acre (about the size of five football fields) piece of land in Malacca donated by Boon Hock’s father, Lim Tong Gak. Boon Hock describes it as an agricultural project with excellent opportunities for an integrated assisted-living facility for adults with disabilities, combining residential and farming activities to engage its residents.
The name comes from its mission: To engage, enable, enhance and empower the lives of adults with disabilities — hence “Quad E”.
Explains Boon Hock: “At many parent support group meetings I have participated in, every parent of a young adult with disabilities has expressed their deep and urgent need to prepare their adult child for supported living, semi-independent or independent living.”
“Parents desperately desire to see their children become more independent, more enabled to take care of themselves, to take ownership of their daily chores, to become more engaged in the local community in which they live,” he adds.
The RM3.25 million (about S$1 million) project hasn’t come without difficulties and Boon Hock had thought of giving up when things stalled. Each time, serendipitously, he would get connected to people and resources that move the project along.
For example, global Canadian non-profit organisation Engineering Ministries International (EMI) provided a team of architects, engineers and surveyors to draw up a Master Plan for the site. During the construction phase, a Singaporean architect, Debbie Lee, lent her expertise to continue the project; an ex-student with farming experience reached out to participate, not to mention family and friends who have been providing financial support.
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“It’s been nothing short of amazing,” says Boon Hock.
In a moment of introspection, Boon Hock shares: “Like his name, Matthew (which means “God’s gift” in Hebrew) has really been a gift from God. We didn’t see it initially. In the first few months, we always prayed with tears in our eyes.”
“Today, we still suffer but yet, in our hearts, we know God has blessed us with him and allowed this in our lives for a greater purpose. I say this with humility because we still struggle.”
Boon Hock shares that stressful situations like this can break marriages, and in his work, he has seen couples split up over raising a child with special needs.
For him and Guek, on the contrary, Matthew was the one who brought them even closer together.
“We both love Matthew. He draws us to pray together, which helps us to stay together,” says Boon Hock.
“When we see how God is using Matthew to bless other people, it encourages us.”
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