HCA Star PALS patient Rasul, 10, was not expected to live beyond a few months. Born with a chronic neurological condition, Rasul’s prognosis at birth had been bleak. “It is a miracle that Rasul has outlived his prognosis and is able to smile in response when others talk to him,” says Serene Wong, Star PALS Senior Palliative Care Nurse.
It is a milestone Rasul was not expected to meet, but today, he even attends school and goes on family outings to the park. For Mdm Sri, Rasul’s mother, each day with him is a precious gift. Over the last 10 years, Mdm Sri has tirelessly devoted her time and energy to caring for Rasul, from showering to daily massages to prevent contractures and feeding via the G-button attached to his abdomen.
Despite the weight of caregiving, Mdm Sri radiates calmness and positivity as she shares her story. “One of the biggest challenges lies in being patient,” Mdm Sri, who also has three other children, says. “It took time for me to understand Rasul’s condition, as well as what he is thinking and feeling.”
The source of Mdm Sri’s patience stems from pure love for her children. “The greatest reward is Rasul himself,” she asserts. “He is special and a blessing to us.”
Rasul snuggles up to Mdm Sri as she shares her personal motivations that keep her going.
It is the same love that inspires Mdm Sri to continue ensuring her children are well cared for. “It is only human to feel angry and tired, but what keeps me going is the need to set a good example for my children,” she shares. “I also make time to rest and sometimes I share my troubles with my older children.”
Nurse Serene examines Rasul.
Mdm Sri and her family have demonstrated great tenacity in the face of challenges, a trait Nurse Serene admires. “This family is very resilient and easygoing – when I broached the topic of Advance Care Planning (ACP), their stand is that Rasul is a gift to them and they will take care of him,” Serene says. “But if or when the time comes, they will accept it.”
“I find comfort in their mindset and I think it’s a healthy way to look at the situation.”
The greatest wealth in the world is often the simplest, if we perceive it as such. “I am not good at advising people,” Mdm Sri laughs, when asked if she had any advice to share with other caregivers in similar situations. “But I think it’s important not to ruminate and to be patient.”
“Children are sensitive, especially children like Rasul. They can pick up on negative energy and act out.”
Finding joy in simplicity also helps the family cope. On Rasul’s father’s days off, the family usually goes fishing together at East Coast Park. “Sometimes, when the weather is good, Rasul dozes off on the picnic mat,” Mdm Sri shares. “My biggest joy is for my family to be happy together.”