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Mummy Yanti arrives home after a long day’s work. Her elder daughter, Queraisyah, is resting on the living room floor. “Aisyah,” Yanti affectionately calls as she reaches out to her and showers her with kisses.
The two-year-old Star PALS patient is non-verbal, but loves mummy’s voice. “I don’t know if she understands, but sometimes she laughs and moves her mouth and tongue. So I am quite sure she loves to hear my voice” shared the 35-year-old.
The younger, baby Arlyssa, crawls over to join them. Yanti holds onto Arlyssa’s arm as together, they sayang kakak’s hair*. They giggle.
As Yanti gazes lovingly at her two precious blessings, all her troubles melt away.
Previously, while heavily pregnant with Arlyssa, Yanti received a call asking her to fetch her husband. He was caught having an affair and the woman’s husband had reached out to Yanti. Devastated, she replied, “he’s old enough to go… he knows his way back.”
“He told her entire family that he wanted to divorce me and to be with her,” she shared.
Yanti wanted to end the relationship, but she stayed for the sake of their children.
He became emotionally and physically unavailable for her. Like Yanti, he was also doing shift work. On his days off, he would moonlight as a driver, to fund his expenses and spend time with friends rather than his family.
As a mother of a special needs and a normal child, Yanti recognises that developmental milestones differ for each of her children, which makes her motherhood journey a new experience every day.
Despite her attempts to salvage their relationship, Yanti was fighting a losing and lonely battle. On one occasion, the couple’s fight turned into a cold war, as neither would apologise. On the third night, he packed his bags and left their marital home without a word. After a month of radio silence, Yanti filed for divorce, ending their three-year marriage.
At a mandatory counselling session, Yanti’s husband was asked if he would repeat his actions in a future argument. Without hesitation, he admitted he would.
Being a child of divorce herself, Yanti had seen the ugly side—the fights, pain and uncertainty— and she wanted to protect her daughters from it.
“Growing up without a father is one thing. Growing up and seeing your parents in an ugly divorce is another. I would rather get out of it now rather than later.”
Due to Aisyah’s condition, she requires a feeding tube that allows fluids like milk and water to be fed directly into her stomach.
During her first pregnancy, the mother-to-be was informed that her baby, Aisyah, would be born with half a brain. The diagnosis sent Yanti down a rabbit hole, as she researched tirelessly on how to manage the condition, both pre and post-partum.
Later, the newborn was hospitalised for three months and required breathing support. Doctors were initially unable to diagnose Aisyah’s condition and had advised Yanti to prepare for the worst.
“You don’t know what’s wrong with her? How can you let her go like that?” exclaimed an exasperated Yanti.
By her fourth month, Aisyah was finally diagnosed with a rare neurodegenerative disorder and had a life expectancy of less than a year. Yet, the first-time mother refused to give up.
“Nobody wants a special child but… these are all fated,” she remarked.
Initially, she let the opinions of others, even that of her own family, affect her. “You must have done something wrong for God to punish you with this child,” were words which she constantly heard.
But she eventually learnt to shut them out and even managed to put her spin of positivity into it.
“Yes, I may have a special child, but I have an express ticket to heaven,” Yanti proclaimed proudly. She believes that being a mum to a special-needs child, is a test of her faith. “God only gives you what you can handle.”
Strong mothers raising strong daughters. Despite her elderly age, Nenek (Grandmother in Malay) helps to care for granddaughters while Yanti is working.
Now the sole breadwinner of her family, Yanti is resolved to provide the best care for her daughters. With the help of our Star PALS team, the single mother learnt to medicate, feed and operate equipment needed for Aisyah’s care. The team continues to manage Aisyah’s condition at home at no charge.
The learning curve was steep, but the Star PALS mum rose to the challenge.
On hindsight, the 35-year-old confessed that caring for her special-needs child proved much more manageable than expected. It seemed that her optimism had helped her blossom into the confident mother she is today.
From there, everything got easier.
Friends and family started transferring small sums, to help her tide over stretched finances. Her elder sister would often visit and babysit the girls and sometimes sponsor outings for the whole family to enjoy. With their support, the full-time working mother worries a little less.
The uncertainty of Aisyah’s condition has been the most emotionally challenging part for the Star PALS mum. At two, Aisyah has surpassed her initial prognosis.
“This is bonus time that I have with Aisyah. But every time I sense something is different, I worry and wonder if her time is up.”
With encouragement from those around her, Yanti focuses on the positive. And when her mind wanders, she reminds herself, “Be strong so that your daughters can be strong with you. They can sense it. They know.”
“My daughter is growing up. She is fighting, so I should fight too. Aisyah is my strength.”
But Yanti is cautiously hopeful, taking it a day at a time.
“The children are the only ones who can push you forward.” Yanti’s greatest strength and fear are two sides of the same coin—her children— and in the same way she is empowered by them, she cannot help but worry for them constantly.
“Her name means ‘Warrior Princess’ and I just want her to live up to her name and pull through together with me.”
*sayang = to show love and affection/ kakak =elder sister
