“We just wanted him to be healthy and enjoy his childhood,” Evang, Emmanuel’s mum, shares with me. “Just like normal kids.”
Emmanuel’s life has been anything but normal. The 12-year-old boy has been fighting a battle against myopathy – a form of muscle weakness – since he was 9.
Sitting down for too long causes him discomfort – even writing can be strenuous for him. His condition has since spread from his legs to half of his body.
Last year, he fainted a few times in school, and it was found that his muscle condition had started to affect his heart. He is waiting for a heart operation to be scheduled, but will also be taking his PSLE this year.
Emmanuel was first diagnosed with myopathy after a series of accidents in school.
“It started in Primary 1. The teachers kept calling me to tell me that Emmanuel had fallen down in school. There were even times he rolled down the stairs!” Evang recalls.
Emmanuel’s classmates called him a “drama king”, thinking he was just trying to get the attention of his teachers. Emmanuel’s teachers thought he was trying to skip classes by pretending to be sick.
It wasn’t an unreasonable deduction; Emmanuel physically looked fine after all. But the frequency of his accidents increased, and the school eventually had to call an ambulance to send him to the hospital.
After a series of tests, the doctors recommended that Emmanuel go for a biopsy to have a final diagnosis.
The thought of sending her child for an operation invokes painful memories.
Evang’s voice breaks as she tries to describe what she experienced at that point in time: “Of course we were very upset. But we needed to know the diagnosis. He was only Primary 3 then.”
She pauses as her gaze falls. “We feel sad for him because he has to stay in the hospital for surgery, check up and diagnoses. Unlike other kids who can go for holidays… I feel very sorry for him.
“But Emmanuel is a very obedient boy.”
Emmanuel had to undergo a chain of high-risk operations before the doctors could finally reach a conclusion.
They also warned that the general anaesthetic (GA) might affect his nerves and cause brain damage. As a mum waiting outside the operation theatre, Evang could only pray to God and “leave everything in His hands”.
“The first thing the doctor told me when she came out, was that Emmanuel had to be transferred to the ICU because he reacted badly to the GA. We were… We were trying to accept that he might not be able to wake up. And that even if he did, he might not recognise who his parents are.”
Silence hangs in the room as Evang recomposes herself: “True enough, he didn’t recognise us.”
I felt that God was talking to him.
Emmanuel slipped in and out of consciousness for the next few days. Whenever he was awake, his mood was unstable and he often shouted and threw things around in the room. He couldn’t recognise anyone.
“I cried,” Evang tells me, “I asked God, ‘Why give me hope – only to disappoint me again? What’s the point of him waking up, but being unable to recognise who his parents are? Who his mother is?’”
She continues: “I couldn’t understand him. When he spoke, I couldn’t understand what language he was trying to express himself in.
“But I felt that God was talking to him.” Little did Evang know, she was closer to the truth than she thought.
“After the operation, I reacted badly. I couldn’t even recognise my mother. I thought I was dead. I thought my parents were Donald Ducks,” Emmanuel smiles sheepishly.
But something else happened too. Emmanuel received a vision from God.
“I couldn’t feel my leg. I thought I was dead. I thought I was home with Jesus. Then I saw light, and I was floating. I saw gates open and many angels blowing trumpets, praising God. And I saw Jesus in front of me wearing a white robe with a purple band over it, and a golden crown.
“I bowed down before Him. And He said: ‘Emmanuel, I want you to preach the Gospel to all your friends to know Me.’ When I came back, I couldn’t believe that I was back. I thought I was still dead. But I was back.”
“Why do you think God gave you this vision?” I ask.
“Because I want to be a pastor. He gave me this vision so that I may lead people to come to know Him as God,” Emmanuel replies.
Evang tells me that in Emmanuel’s kindergarten, the children were once asked to come dressed as who they wanted to be when they grew up. Emmanuel went to school tucked in formal wear, and when his teacher asked him what he was supposed to be, he answered “pastor”.
“The teacher thought Emmanuel mistook another occupation that starts with ‘P’, like ‘police’ or something,” Evang laughs. “But he really wanted to be a pastor.”
Clearly, Emmanuel hasn’t let his medical condition stop him from his dream. That same kindergarten teacher? She got married this year and invited Emmanuel to pray for her at her wedding.
One of Emmanuel’s friends also came to tell him that he wanted to accept Jesus as his Lord and Saviour. Together, they said the Sinner’s Prayer and his friend is now regularly attending a church and reading the Bible.
“Because of that, I know God has a plan for me,” Emmanuel says. “I don’t think I’m less able to do the task that God gave me as I believe that I have Jesus and He will help me.”
Life for Emmanuel is different from the kids his age.
“It’s been many years since our family went for a holiday because of his medical condition. He can’t walk and he will feel uncomfortable. We have to stay indoors. We have to sacrifice,” Evang says.
Holidays became hospital trips and vacations meant ward stays, she tells me.
Evang shares that Emmanuel also had to give up some of his aspirations because of his medical condition: “He was selected to join guzheng because he was talented. But the teachers told me he has posture problems. He can’t sit straight.
“So we had no choice but to withdraw him out from the CCA. That was the day we knew he was rejected,” says Evang.
Thankfully, there are still other activities where Emmanuel could still take part in.
Justin Ng, Emmanuel’s personal coach from Taekwondomics, customised Emmanuel’s training sessions after knowing about his condition to ensure that the sport will help develop his motor skills rather than to strain it.
Ng says: “I believe that all children are equal and everyone should have an equal chance to develop in sports.
“Especially for Emmanuel because he persevered and never gave up on himself. So as coaches, we should encourage and motivate every student to do well in life.”
Though many would see Emmanuel’s condition as a handicap, the 12-year-old himself doesn’t see it that way.
Instead of blaming God for all the things he has to forgo because of his condition, Emmanuel presses onwards with the vision that has been entrusted to him.
“This is life,” Emmanuel says matter-of-factly. “Since God is our Creator, maybe He has a reason for it.
“And I believe that He will not hurt me.”
We all have an idea of how our lives should look like, but not everything in life goes as planned. I’ve learnt from Emmanuel that there is a kind of life that isn’t afraid of death – one filled with hope no matter what.
So you don’t have to lead a normal life to live an abundant life – you just need to know what you’re living for.
“I have come that they may have life, and have it to the full.” (John 10:10)
This article was first published on Thir.st.
