SINGAPORE: As she carried her youngest son to the cold operating theatre, and the anaesthesia was injected, and he closed his eyes, Mdm Carolyn Quek Su Lin felt that she was going to lose him.
In that moment, a question she had asked herself before – because she was “unable to protect” her children from suffering – repeated in her mind: “What have I done to you?”
“My heart just bled,” she said. “Time and time again it’s just so painful. Definitely, this isn’t what I want motherhood to be.”
Her eldest and youngest boys, eight and three years old respectively, suffer from a rare immune deficiency which weakens their ability to fight infection. Her middle child, seven, is clear of the disorder but has autism.
It is a daily struggle to care for a child with a disability, let alone three of them, as the programme On The Red Dot finds out in following the lives of three families. (Watch this episode here.)
In Mdm Quek’s case, there is also the question of how is she to overcome her fear, helplessness and guilt as a mother.
‘AS IF I CURSED MY SON’
It was all so different when she quit her job in sales and marketing to pursue her dream of raising a family. She felt “blessed” because the following year, at age 37, she delivered her first-born, Lucas.
“He was healthy at birth, and everything was perfect,” said the stay-at-home mum, now 45.
At the age of two, he was due for his measles, mumps and rubella vaccination, which is compulsory for children in Singapore. That was when his body reacted to the vaccine; besides a fever, scars appeared after a few days.
He was rushed to hospital, where doctors gave him a battery of tests to identify the infection.
“They found that the infection had invaded his bone,” she recounted. “And they needed to cut open the foot of his (affected) leg to remove the bacteria.”
Then they dropped the bombshell: Lucas had X-linked agammaglobulinaemia (XLA), a rare genetic condition. “The next thing I knew, he needed to be on life treatment,” said his mother.
Every four weeks, he needs to go to the hospital for intravenous immunoglobulin therapy in order to fight infections like the common flu. “It’s an eight-hour treatment day,” said Mdm Quek.
She remembers very well that day the doctor explained what immune deficiency was. “I was very lost and felt as if I’d cursed my own son,” she recalled.
“What I aspired to do with my children – to watch them grow, take care of them, laugh with them, embrace with them so many things in life, share with them all my dreams – just came to a standstill.”
After he started treatment, she began to search for other solutions, one of which she learnt was a stem cell transplant. But she did not want to push the burden of “such a big operation” onto her second child, Jonas.
“So at that time, I was very naive,” she said. “Probably to ease the burdens, and also to increase the possibility of a match for the stem cell … I decided to try for a third child.”
She and her husband, Mr Teo M K, later decided against a transplant and came to accept lifelong treatment for Lucas, but out of their initial decision, Titus was conceived.
Eventually, as with his eldest brother, he was found to have the same disorder and needed an operation for a bone infection.
Both brothers are now getting the same lifelong treatment, and although the side effects vary from patient to patient, theirs are similar. They have skin conditions like eczema, and they are hyperactive.
“They are so hyper that they can’t control themselves,” said Mdm Quek, who added that she faces the most challenges with Lucas now, as his hyperactivity is coupled with dyslexia.
“It’s the worst combination for anyone studying in a mainstream school … Despite his learning difficulties, he doesn’t qualify for a special school.”
If he cannot answer a question in school, he would scratch himself out of anxiety, and any broken skin could give rise to a bacterial infection entering the bloodstream.
So his mother is “in constant touch” with his teachers and allied educators to “brief them on his triggers”. Meanwhile, at home, she has grown more frustrated with getting him to do his schoolwork, as his hyperactivity affects his focus.
“If the teacher has given me four pages, that would take me through the night,” she said exasperatedly.
“When I get so tired … I’d start to say a lot of nasty things like, ‘Why are you so stupid’ or ‘Why can’t you do these things?’”
She feels helpless not only when she realises that, many a time, she cannot coach him in his studies, but also when she is not the mother she wanted to be.
At a very young age, she lost a sibling, and her mother had “her own baggage” to carry. So growing up, Mdm Quek was looked after by a doting grandmother, while her own mother “was so harsh on discipline”.
“I wanted to be a mother to undo a lot of wrong things that I went through …. But yet I’m repeating all these things to my own child,” she admitted.
“So I started to … resent myself and say that maybe I shouldn’t even be a mother in the first place.”
She has seen Lucas being fearful of her and could “sense his (emotion) that ‘maybe Mummy doesn’t love me’”.
“I want to tell him, ‘No, I love you so much, but I just don’t know how to help you because I couldn’t control myself,’” she added.
“It’s like a … demon in me that’s unleashed. And I need to subdue it. But I don’t know how.”
She has found a way forward, however – through counselling and coaching, especially at parent-child interaction therapy sessions.
THE FOUR-LETTER WORD
Besides professional help, Mdm Quek has a few pillars of support: Her faith, her church community and other mothers who have children with rare disorders, such as those she met in the Rare Disorders Society (Singapore).
If not for the listening ear they have provided, she thinks she would have sunk into depression. There is, however, one thing she cannot shake off.
“Ever since I’ve been a mother, I feel that this four-letter word, fear, has been staring me in the face every day,” she said.
For example, owing to Jonas’ autism, which he was diagnosed with at the age of three, he lacks an awareness of danger.
So whenever she brings him out, she must “always hold him tight”, even as she admitted that she has “lost him a few times during outings”.
In fact, she must do a “recce” for all her boys’ sakes. “I have to be very mindful of every little detail of their life, mainly because bacterial infection can strike any time,” she said.
“Whenever I see my kids having broken skin, eczema (or) start scratching themselves, I’d be on high alert.”
Still, that was not enough to stop Lucas from picking a flower and touching the soil on one occasion after she had parked at a surface car park.
Mdm Quek is also mindful that while her children may look normal, people may not know that they have “invisible” disabilities. Still, the public scorn and criticisms she faces when they act up tears her apart.
Jonas, for instance, is “very fixated (on) things like … the way his toys are being lined up and placed”.
“When he sees his toys being disrupted by his brothers, then he’d melt down, he’d cry, he’d say, ‘The room is a mess, the room is a mess! I have to clean it up, I have to clean it up,’” she cited.
To manage that, she may explain that “mess is part of life”, so he need not be upset by it. And if she has to soothe him further, she would hug him closely.
Being in an early intervention programme has helped him, but his future remains a worry to her, especially because of her health. For example, she has a blocked tear duct and thus needs an eye operation.
A fall she had in her 20s caused a tail bone misalignment, and with her frequent bending to carry her children and do household chores, there are times when her slipped disc relapses and she “can’t even function”.
It was only recently that she hired a foreign domestic helper with what spare resources the family has after paying for the children’s special needs expenses of S$2,000 monthly.
A COMMITMENT TO FAMILY
As the sole breadwinner, Mr Teo, an engineer by profession, travels often. And with Mdm Quek busy as the children’s main carer, what “started off wanting a family to journey through life together” has drained both of them, she said.
“He's so busy working hard and trying to provide for the family … He can’t be there for me if things happen,” she added, admitting that she feels like a single parent in many ways, while she has also neglected him.
“All this learning (of special needs) has robbed us of a lot of time that we could have had for each other … But having children is a choice that I’ve made. And it’s my responsibility to commit to this life.”
What the couple, who got married in 2003, cannot offer their children is to bring them overseas – “places I really wish to, like Australia, (to) see the farm stays”, she said.
In lieu of that, the family’s “simple pleasures” include walks in the park, going to the zoo and to Universal Studios Singapore.
“As long as Daddy (and) Mummy are with them, and they have each other, I think to me that’s the experience that … when they grow up, they’ll remember this is the best time they spent with the family,” she said.
There was, however, a surprise in store for them from the On The Red Dot team: Horse-riding (at Gallop Stable), an experience they never had before and something Mdm Quek had wanted for them.
“I always wanted to give my children a happy childhood,” she said. “It’s only at this age that, I feel, they’ll enjoy all these little moments.”
And when that moment came, they were able to ride the horses calmly and follow the instructions. “It made me feel good as a mother. It made me feel achieved,” she beamed.
“It makes me feel very comforted to see them bond well with each other … It gives me hope that these three will be with each other for life.”
Watch this episode here, and also read about the struggle to bring up Tamimi, a 13-year-old with brittle bone disease. New episodes of On The Red Dot air on Mediacorp Channel 5 every Friday at 9.30pm.