Woman of Steel: The full story
June 10, 2013 - The New Paper
What is it like to be the mother of a sick child?
A week ago, a 31-year-old woman was arrested and charged with murder.
The victim? Her son. He died in hospital after falling from the kitchen window of their three-room HDB flat in West Coast Road.Neighbours say he was a sickly child, often wheeled around in a stroller, suffering from a liver condition and severely jaundiced.
The New Paper on Sunday speaks to a mother of three, two of whom have life-long illnesses, to find out about the challenges of a caregiver.
They seem like any ordinary family you’d find in the heartland of Singapore. They live in a modestly furnished four-room HDB flat in Tampines, which Mrs Lim Chaun Song, a housewife, keeps spick and span.
But walk into the kitchen and you see plastic bags carrying the logos of different hospitals placed neatly on the kitchen cabinet. They are full of medicine.
Like the young mother in the West Coast case, Mrs Lim, who turns 50 next Sunday, has had to deal with the stresses of being a caregiver.
Her youngest child, Stella, 13, suffers from biliary atresia, a rare chronic liver disease. She was born without ducts that drain the bile from the liver.
In 2008, Mrs Lim’s second daughter, Jessie, who was in Primary 5, returned home after a routine school health check-up with bad news.
Jessie, now 16, was diagnosed as suffering from idiopathic scoliosis, which meant her spine was bent sideways.
While this is not life-threatening, she had to wear a back brace to straighten her curved spine for 18 hours a day.
Mrs Lim says: “But thankfully, she could remove the brace last year since her condition has improved.”
Her eldest child, Derick, 18, was diagnosed in 2011 with ankylosing spondylitis, an arthritic condition that affects the joints of the spine, causing inflammation, severe pain and stiffness in the back.
As the condition progresses, the inflammation of the spinal joints may cause the entire spine to fuse together, causing severe immobility and deformity.
Her husband, 51, who works as a packer-cum-delivery man for a pork seller, has had kidney failure since 2007.
“He had to start kidney dialysis right away, three times a week,” says the petite, bespectacled woman softly.
Mrs Lim can rattle off the medications that each family member needs, their medical appointments and explain the complexities of their conditions.
Ask her if she feels that life has been cruel to her and she does not evade the question or break down.
Yet, you can hear the pain and sadness in her voice, and you can detect a sense of frustration from how the odds seem constantly stacked against her.
“Sometimes, I ask myself why God is not fair to me. Why did He give me a family of sickness? I am just one person and I have to take care of so many people.
“I’ve blamed God before, but I also know I cannot do anything. Since He wants to give me this, I just have to accept it and try to overcome,” she says.
She struggled with coming to terms with the situation in the beginning, she admits.
“I could be washing clothes in the toilet or in the shower, and I’d just cry and cry soundlessly because I didn’t want to worry the others.”
It started in December 1999, right after Stella was born.Within days, she and her husband noticed that something was very wrong.
Stella wasn’t shaking off her jaundice. Her skin colour was like “charcoal”.
“Her poo was pale and the colour of tea, but because we had not encountered something like that, we were not aware how bad it was,” Mrs Lim says.
After several tests, ultrasound scans and later, a biopsy, doctors told her that her daughter had to go for an operation.
When Stella was five weeks old – on the eve of Chinese New Year in 2000 – she went through a major operation in which doctors joined the intestines directly to the liver.
A sickly child took a toll on the family. There were bills to pay. And two other children to bring up.
Stella was in and out of hospital, sometimes, for weeks at a time.
Desperate for a cure, Mrs Lim tried everything, including changing her child’s name in the belief that it could help change her fate.
Then, a temple medium she consulted told Mrs Lim to abandon Stella.
She reaches over and places one hand over her daughter’s.
“But I carried her for nine months. I couldn’t do that. No matter how difficult my life is, I must be the one to bring her up. I am her mother, she is my daughter. There was no way I was going to abandon her just because she is sick,” she says.
So she soldiered on.
Stella does not have a clean bill of health even today. This year alone, she has been in hospital four times.
Mrs Lim says: “Right now, only one third of her liver is functioning but doctors have told us that a liver transplant is not yet necessary.”
When Derick’s condition became apparent in 2011, it was another blow.
She says it is a life-long condition and he must have medication for the rest of his life.
She is grateful for medical social workers from Club Rainbow, who take time to visit and counsel her. And for her neighbours.
At her lowest, she contemplated suicide, she admits.
“It’s so easy for caregivers to get depressed and stressed, or even to wallow in self-pity, but if you start to give up, what is going to happen to the sick person?
“I’d contemplated suicide but then, how can I give up on my own family? So whenever I’m depressed, I walk over to my neighbours and chat with them.”
Right now, she hopes to find a part-time job to help supplement the family’s monthly household income of $1,250. Her husband is the sole breadwinner.
“It’s also to prepare for an emergency in case my husband’s condition worsens and he can no longer work,” Mrs Lim says.
She is realistic, however, about her chances of getting a job which would allow her to drop anything should Stella develop a fever. While most children recover, Stella’s condition means the fever could be signalling something more sinister, and often she has to be rushed to hospital.
Yet, it is important to Mrs Lim that there be no pity for her or her family. She says: “It’s very difficult to survive but we try and do manage. I am so thankful that all the medical bills are fully subsidised by the various hospitals.”
Her two younger children get some food coupons in their schools. They are hoping for a bursary to help cope with their son’s polytechnic education.
Mrs Lim, however, chooses to look on the bright side. She says: “Our financial situation is very tight and we are struggling, but luckily, my children dont’t have any demands.”
Stella, who has defied all odds, is now in Secondary 2.
It is clear that the young girl knows of the sacrifices her mother has made for her. She says, with tears in her eyes: “I know it has been very tough for my mum. She has gone through so much for me, for this family.”
Ask her if she wants anything for herself and the shy young girl replies quietly she does not need anything.
But she has one wish: That she has the means to take her family on a holiday, even if it’s for a one day-one night trip to Malaysia.
The Lims have taken a family holiday only once before – a trip to Bintan that was sponsored by Club Rainbow, which Stella belongs to, many years ago.
They have also never been to a restaurant. Special occasions are celebrated with a visit to the zhi char stall at a neighbourhood coffee shop.
Stella is wishing she can take her mother out on her birthday next week.
She says: “My mother has done so much for me in this short life journey. But I want her to know that her job is not just to take care of us.
She must also take care of her own health. I hope she will stay healthy and smile always.”