‘I keep on praying’: a mother’s decades-long struggle with a special needs child

When her daughter complained of chest pains in March, Paridah Muhammad assumed it was a bout of pneumonia, attacks of which Chik Saim often suffered.

As usual, she packed a bag and took Chik to Hospital Putrajaya for treatment.

This time, though, the 63-year-old mother was told that her daughter would have to be admitted to the emergency ward.

The next morning, she hurried to the ward to visit but Chik was non-responsive.

“She didn’t look at me when I called her name. Her eyes were darting everywhere else.”

After running a scan, the doctor told her that Chik had suffered a stroke due to high blood pressure and was now partially paralysed.

“When they told me this, I could not accept it,” Paridah told MalaysiaNow at her home in Sepang, Selangor. “I got angry and cried but the doctor and nurses comforted me.”

Chik spent three weeks in hospital because of the stroke. She eventually recovered enough to go home but her life has been irrevocably changed.

Now 41, she was a special needs child from the start. She was born with Down’s syndrome although she was able to move about like normal until the stroke.

Now, she can only lie on a bed in the living room.

The doctor had suggested an operation but Paridah did not dare risk it as Chik’s chances of survival would be only 50-50.

From bad to worse

The second of six children, Chik was always her mother’s especial responsibility.

“Even her birth was difficult although thank God she was born safely,” Paridah recalled.

“But she was always a bit feeble. She was slow to move and get up. She was seven years old before she learnt how to stand up and move.”

This remained the case despite visits to the doctor and attempts at treating her with traditional medication.

But the biggest challenge for Paridah came when Chik experienced her stroke.

Confined to her bed, Chik developed sores from lying in the same position for too long. Her kidney and heart function also deteriorated, adding to the challenges brought on by her diabetes.

Her nutrition comes from the milk that she drinks through a nasogastric tube which runs through her nose and down to her stomach. This tube must be changed once a month at the clinic in Salak Tinggi.

Speaking to MalaysiaNow, Paridah was frank about her limitations and acknowledged that she could not take care of Chik on her own. She said she had asked one of her sons to come home to help look after his sister.

But even with help, other obstacles remain.

The cost of Chik’s treatment alone is a massive hurdle for Paridah, who is no longer working.

“Since she became bedridden, I have had to rush her to the hospital twice – once in April and another time in May.

“An ambulance came to take her to the hospital but to go home after that, I had to find another one and pay for it with my own money,” Paridah said.

The cost of a one-way ambulance trip is about RM250, depending on the kindness of the operator.

This is without factoring in the cost of other essentials like medication, diapers, gel and cleanser for Chik’s sores.

At 63, Paridah struggles each day to stay ahead.

But despite her financial constraints, she is thankful as her children and the zakat centre are always ready to help out.

She has also received assistance from charity organisation MyHeart Association which gave her medical equipment, medication and transportation worth about RM15,000, all in.

“I keep on praying,” she said. “If Chik can eat normally again and sit, even in a wheelchair, I will be so grateful.”