Singapore mum Carolyn Quek Su Lin was 37 when she gave birth to her first child, Lucas.
“He was healthy at birth, and everything was perfect”, she tells Channel NewsAsia (CNA).
In fact, things were perfectly fine until Lucas turned 2. Fate however, had other plans for the family. Today, Carolyn is mummy to three boys aged 8, 7 and 3. Her oldest and youngest children suffer from a rare immune deficiency disorder, while the middle child has autism.
Carolyn reveals the challenges of parenting a special needs child, and the one emotion she struggles with, every single day – FEAR.
Singapore mum shares the challenges of parenting a special needs child
When Carolyn’s oldest son, Lucas, was 2, his body did not react favourably to the MMR vaccine. Apart from having fever, scars broke out after a few days.
Tests revealed that the infection had attacked the child’s bone. He had to get operated on his foot to remove the bacteria.
Tests also revealed something serious – Lucas was suffering from X-linked agammaglobulinaemia (XLA), a rare genetic disorder, which required lifelong treatment. The disorder affects the body’s ability to fight infection.
PHOTO: SCREENGRAB CNA VIDEO
Carolyn remembers her helplessness when she first heard the diagnosis.
“I was very lost and felt as if I’d cursed my own son.”
“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”, she tells CNA.
Having an immune deficiency disorder means that every month, Lucas needs to get intravenous immunoglobulin therapy in the hospital, so that he can fight infections like the flu.
“What have I done to you?”
In her search for a cure, Carolyn learnt that one solution was a stem cell transplant. So she decided to try for a third child in the hope that there would be a match for the stem cell.
And thus was born, Titus. As Fate would have it, Titus was found to have XLA as well. He needs lifelong treatment too…
Both brothers have been experiencing side effects of the treatment. They suffer from eczema and are hyperactive. Lucas is dyslexic as well.
PHOTO: SCREENGRAB CNA VIDEO
Carolyn’s life hasn’t been easy, and many a time she has been overcome by feelings of guilt and helplessness.
As she finds herself unable to protect her children from suffering, one question keeps haunting her -“What have I done to you?”
“This isn’t what I want motherhood to be, ” says this stay-at-home mum, who quit her job years ago to start a family.
Her husband, Mr Teo, is an engineer, and the sole breadwinner of the family. His job requires him to travel often, leaving Carolyn as the primary carer for the children.
The children’s special needs expenses come up to S$2,000 monthly.
“I love you so much, but I just don’t know how to help you”
In spite of being hyperactive and dyslexic, Lucas doesn’t qualify for a special school.
The added stress leads to greater health issues for the child. When anxious about not being able to answer questions in school, he scratches himself, leaving his body prone to bacterial infection.
Hence mummy Carolyn is always making sure that teachers and allied educators know about his condition.
Getting him to do his schoolwork has not been easy, and she often finds herself exhausted.
“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 reveals to CNA.
These are harsh words, and she never thought she would speak to her children in that manner. That was not the mother she had wanted to be…
“I love you so much, but I just don’t know how to help you because I couldn’t control myself”
“It’s like a … demon in me that’s unleashed. And I need to subdue it. But I don’t know how”, says this helpless mum.
Every day presents a new challenge and a new fear.
PHOTO: SCREENGRAB CNA VIDEO
Having autism means that she has to hold on to Jonas tightly, for he has little awareness of danger. He has got lost a few times during outings.
And she has to be especially careful about Lucas and Titus because of their illness.
“I have to be very mindful of every little detail of their life, mainly because bacterial infection can strike any time.”
“Whenever I see my kids having broken skin, eczema (or) start scratching themselves, I’d be on high alert”, she reveals.
Finding support through tough times
Carolyn worries for her kids’ future because she also has a few health issues of her own.
She has a blocked tear duct and needs an eye operation. Also a fall in her younger days led to her suffering from tailbone misalignment. She finds it difficult to carry children and do household chores.
She has now hired a maid for help.
PHOTO: SCREENGRAB CNA VIDEO
This mummy is determined to give her kids a happy childhood. The family enjoys walks in the park, going to the zoo and to Universal Studios Singapore.
“Having children is a choice that I’ve made. And it’s my responsibility to commit to this life”, she tells CNA.
“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.”
Here’s wishing this family lots of love and happy times ahead.
Also READ: Singapore dad shares how a rare disease left his children bedridden and tube-fed
(Source: Channel NewsAsia)