Seven days after he was born, Joel Jiang had to undergo an open heart surgery. His heart was so swollen that after the operation, doctors had to leave his chest cavity open for three days. Blood tests showed that Joel had a severe form of DiGeorge Syndrome, a rare genetic disorder that caused serious heart defects and developmental delays.
It was a very difficult period for his parents, Ke-Yue and Shirley, because of the uncertainty. “We didn’t know how long he’d be in hospital and what other procedures he would have to undergo,” says Ke-Yue.
All they could do was surrender the situation to God. They couldn’t be in the operating theatre with their baby, but they knew God was. Says Shirley, “We constantly told Joel that Jesus is there with him.” They also played a CD of children’s hymns beside his crib. Day and night, even in the Intensive Care Unit, the music never stopped.
Joel on his first birthday. After spending most of his first year in hospital, he was discharged on the eve of his birthday.
Weeks turned into months, and in the end, their firstborn had to spend a total of one year in hospital.
But Ke-Yue believes that during the time in the hospital, Joel met Jesus.
“Whenever he hears the song ‘Jesus loves me’, he would stop crying or become calmer,” he says. “So we call it his favourite song.”
They have also seen signs of how the Holy Spirit has touched Joel, even as a young child. Whenever they were in church, for example, Joel would never cry or make a fuss. “During a sermon or prayer, he’d be very quiet,” Shirley says. “It’s like he knows.”
Joel at home with feeding tube, and a relieved Ke-Yue.
And there was Joel’s first word, uttered when he was four years old. “Many people were sceptical, but Joel’s first word was ‘Amen’,” adds Shirley with a smile. “Some people ask if he meant to say ‘ah ma’ (meaning grandmother), but no, he really said ‘Amen’!”
This year, Joel turns 15—despite doctors giving him only six months to live. Complications during surgery had affected his muscle control, but Joel has overcome those challenges and learnt to feed himself, say a few words, and even take his first steps.
“Every day is a blessing,” says Ke-Yue.
All these miracles have taught him and Shirley to keep trusting God in the journey of parenting. Over the years, through the health and sickness of their children, they have come to see His presence in their lives every day and in many ways.
Give Us This Day 9
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God’s Gift of Children
Initially, Ke-Yue and Shirley were unsure about having more children. How would they have time for another child? they wondered. But a conversation with Joel’s cardiologist changed their minds. “He told us that he had seen many parents whose world revolved around their special-needs child. And he said that having more children would be good for us—and for Joel,” says Ke-Yue.
And so the couple decided to trust God. The result was twin boys, Jonathan and Joash, now 13, and a girl, Joy, now 10.
Ke-Yue and Shirley, and their children Joel, Jonathan, Joash, and Joy.
When the twins came along, Ke-Yue and Shirley knew they were God’s gift to them, in more ways than one. “Twins have each other for company,” Ke-Yue explains. “Even when we were busy with Joel, they could entertain themselves.”
Their daughter, meanwhile, seemed to share a special bond with her eldest brother. “Joy looks out for Joel,” Shirley points out. “She’s like his guardian angel.”
“Through Joel, our other children have personally witnessed God’s faithfulness. They know that when they go through difficulties, they can lean on God.”
Of the many heartwarming moments between Joel and Joy, one incident stands out in their parents’ memory. It happened one night when there was a heavy thunderstorm. Struggling to cope with the thunder because of his sensitivity to loud noises, Joel threw a hysterical fit and suddenly lunged at one of his brothers.
“Joy sat with him on the sofa and held his hands,” Shirley recalls. “Every time there was a loud clap of thunder, we could see her grimacing, yet she didn’t let go of her brother’s hands.”
Shirley with Joel, Jonathan, Joash, and Joy.
At the same time, Joel’s siblings have learnt much from their oldest brother. Seeing God at work in his life, they have come to believe that there is a God who cares for them. “Through Joel, our other children have personally witnessed God’s faithfulness,” Shirley says. “They know that when they go through difficulties, they can lean on God.”
Ever since Joel was a baby, Shirley had always prayed with him and assured him of God’s presence. So, when the other children came along, she found that talking to them about God came very naturally. “In our household, we always speak of God. When there’s something good, we give thanks and praise God. When there’s something that’s not right, we pray about it.”
Lessons like these have left a strong impression on the children, especially when they faced their own challenges with health.
Jonathan’s Struggle
For Jonathan, the older of the twins, an ongoing struggle with sickness has taught him much about trusting God.
In 2017, when he was still in primary school, Jonathan was diagnosed with an auto-immune condition. His treatment included a fortnightly injection and an oral medication that produced side effects similar to those caused by chemotherapy. Many nights found him in the toilet throwing up while the rest of the family was sleeping.
“He has been praying for the oral drug to be removed from the treatment plan,” shares Shirley. “Recently, his doctor took him off the fortnightly jabs, but not the drug. He was very disappointed.”
In the past years, Jonathan has also had to deal with a kidney problem and lately, a blood-related health scare. The seemingly never-ending series of health issues, says Shirley, has caused her son to feel upset with God on many occasions.
“He feels that God is not working in his life,” she says. “One time, he said to me, ‘Maybe your God is not my God. Why does He answer your prayers but not mine?’”
When he asks such questions, Shirley will remind him of the times that God was there for him.
“One time, my son said to me, ‘Maybe your God is not my God. Why does He answer your prayers but not mine?’”
One of these times was just before his Primary School Leaving Examination (PSLE), when Jonathan had fallen sick just a month before the crucial exams. Because of his auto-immune condition, he experienced symptoms that were not only more severe, but also lasted a longer time. As a result, he missed all his preliminary exam papers.
“He was quite upset about it because he had studied really hard,” says Shirley. “He’s a very driven boy.”
The family prayed for Jonathan’s recovery; by the time the PSLE arrived, he had fully recovered and was able to sit for all his papers without incident.
“God is amazing, His timing is perfect,” recalls Shirley. “Jonathan did very well for PSLE, and was one of the top scorers in his school.”
The Jiangs on holiday.
Another time, when the oral medication caused Jonathan to throw up in school for two consecutive weeks, he started to worry that it was going to continue into the third week. Shirley prayed together with him and read 2 Timothy 1:7: “For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline.”
The day after, Shirley received an excited text message from her son after school. He had actually felt nauseated, but then remembered the words of the verse they had read, and did not throw up.
Small wins like this have helped to reinforce Jonathan’s trust in the Lord.
As her children mature into teenagers and navigate their own faith journey, she hopes that they will develop their own relationship with God and “see God as their God, not just their parents’ God.”
Shirley believes that open communication—hearing them out and allowing them to ask questions—helps her to understand their struggles and gives her opportunities to pray with them. She adds: “As parents, what we do is just to continually encourage our children to hang in there.”
A Comforting Truth
It’s an encouragement that Shirley and Ke-Yue need themselves, too, as caring for sick children has been a struggle. Shirley, especially, is not only the main caregiver for their children, but is also looking after her father, who has cancer and lives with them. “It’s really trial after trial,” says Shirley. “And the human side of us sometimes feels that life is not fair.”
But, with each challenge that comes their way, they hold on firmly to the belief that God sees. “He knows what is happening and what we’re going through,” says Shirley.
This truth—that God is there with them at every moment—not only helps both of them through each struggle, but has also changed the way they relate to God.
Joel being baptised just before a major operation.
Says Ke-Yue: “Before Joel, my faith in God was superficial and theoretical. I understood that God is there for me, but I had yet to experience this truth in such a powerful way. It’s only when there are no answers, where the doctor tells me that my child may die on the operating table, that I learn to surrender everything to Him.”
One verse that encourages him is 2 Corinthians 12:9: “My grace is sufficient for you, for my power is made perfect in weakness.”
“Before Joel, my faith in God was superficial and theoretical. I understood that God is there for me, but I had yet to experience this truth in such a powerful way. It’s only when there are no answers, where the doctor tells me that my child may die on the operating table, that I learn to surrender everything to Him.”
As someone who likes to be in control of things, Ke-Yue found himself in an uncomfortable position when he realised that he had no control over Joel’s situation. “When you surrender to God, His power comes through, and you can do so much more than human strength can ever accomplish,” he reflects.
Shirley agrees, saying, “It’s only when I surrender all to God, that things change.”
Ke-Yue encourages parents to commit everything to the Lord. He says, “The road ahead may be uncertain, but rest in assurance that God is there with you.”
Joel at his first horse-riding class.
Another passage that has given him strength is Romans 5:3-4: “We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
This passage, says Ke-Yue, reminds him that whatever the circumstances, God will see them through it. “He will sustain us through this period of suffering. Even though the problem seems really big now, we are assured that God will work things out according to His time and purpose.”
The Next Challenge
The story, however, isn’t over for the Jiangs. The family is bracing themselves for the next challenge—Joel’s heart surgery in June this year.
This operation, to replace a defective valve in Joel’s heart, was supposed to be done 14 years ago. It was postponed numerous times for various reasons, and then indefinitely, but lately, his doctors advised them to go for it as Joel’s heart function has significantly deteriorated.
From walking sticks to running, Joel has made much progress.
Shirley admits that this was a very difficult decision for them to make, as Joel may not survive the operation. But not undergoing the operation may also mean that his heart may suddenly give out one day.
“I’ve always prayed that Joel wouldn’t need this operation. But now he has to undergo it. Does that mean God has failed us? No. There is a plan. We have to trust Him.”
In such a time, Shirley finds comfort in the words of Isaiah 55:8-9: “‘For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.’”
Joel, looking smart in a bow tie.
She says: “I don’t understand why the operation has to happen now, but I want to trust that even though I don’t see it, God has a plan for him. Should anything happen to Joel, I don’t want to be angry or bitter.”
“I’ve always prayed that Joel wouldn’t need this operation. But now he has to undergo it. Does that mean God has failed us? No. There is a plan. We have to trust Him.”
To prepare Joel for the operation, Ke-Yue and Shirley regularly assure him of God’s presence. It’s the same words that 14 years ago they had whispered to him as an infant in the hospital crib:
“Jesus is with you; you don’t have to worry.”
