Caregiver Stories (Part 2): Risk, Reality, and Resilience

Caregiver Stories (Part 2): Risk, Reality, and Resilience

Real stories from patients and caregivers reveal lessons about courage, resilience and finding meaning when life took an unexpected turn.

Previously, we celebrated two individuals who inspired us with their strength and spirit: Caregiver Stories (Part 1): What We Learn When Life Shifts.

In Part 2, we share two more stories from the SingHealth Inspirational Patient & Caregiver Awards 2025 – this time, the journeys of Marsita and Zainab. Their stories remind us that care is built on love, resilience, and the quiet determination to never give up.

Lesson 3: Knowing my limits makes me a better caregiver

Marsita Rubianti: Full-time Caregiver 

An Unexpected Diagnosis

My pregnancy with Farhan seemed smooth sailing, so I was completely caught off guard when he was admitted to the Neonatal Intensive Care Unit for a whole month right after birth. The day I brought him home, he threw up all his milk. Within hours, we rushed back to the hospital.

The doctors diagnosed Farhan with unbalanced chromosomal translocation. It is a genetic disorder affecting his growth and mobility. His condition was severe, requiring round-the-clock medical support.

It was a dark and difficult period. I had zero experience caring for a child with special needs. Moreover, I had a toddler daughter to look after.

Praying for a Second Chance

When Farhan turned four, he needed surgery to insert a feeding tube due to severe acid reflux and swallowing difficulties, Unfortunately, complications developed and he went into respiratory arrest. I remember watching in despair as his heart rate flatlined on the monitor.

I prayed so hard for a second chance and I promised to take better care of him. At that moment, his breathing miraculously recovered.

Small Victories and New Heartbreaks

Staying true to my promise, I learned massage techniques from a therapist. I massaged Farhan diligently every day. As he grew stronger, I felt encouraged. For several years, he attended a special needs school. He could not speak, but his face and body language showed how much he loved being around his friends. He benefited from the therapy and could even walk using a walker for a while.

Sadly, more complications arose. Farhan developed epilepsy, scoliosis, and heart disease. Today, he has very limited mobility and is mostly bedbound. He now needs a Continuous Positive Airway Pressure (CPAP) machine permanently to help him breathe. I learned how to operate the machine and suction his phlegm to keep his airways clear.

The High Stakes of a Simple Cold

Taking care of Farhan is manageable on a good day. However, everything changes when he falls sick. A simple runny nose can severely disrupt his breathing because he does not know how to expel the phlegm.

Recovery takes a massive toll on his body. As his immunity is weak, he takes a long time to recover. I stopped bringing him out altogether, except for doctor visits, as the health risks are too high.

Drawing Strength from Each Other

As his mother, I want to spend many more years with him. Deep down, I’m also mentally preparing myself to let him go. It pains me to see him suffer. I can only imagine how exhausting it must be for him to keep fighting.

However, I tell myself to stay strong every single day, so he won't give up. I once told Farhan that we must work as a team: if I feel weak, he must lend me his strength. He gave me a huge hug right after, as if he understood completely. The bond we share is truly special.

Lesson 4: We had to let go, but never give up

Zainab Binte Bakar: Foster Mother 

An Open Heart for Fostering

I have always had a huge soft spot for children. I volunteered with youth groups in my younger days. By the time I reached my 50s, I joined the foster parenting scheme to give vulnerable kids a loving, nurturing home. That was when I learned about Muhammad.

Only five months old then, he’d already spent two months in the Intensive Care Unit after sustaining injuries from his birth parents.

Bringing My Boy Home

At that time, the doctor had warned me that although he appeared fine, Muhammad would grow up with major health complications. Since his birth parents refused to care for him, I applied to be his foster mum. I was so happy to bring him home.

Muhammad suffered from Spastic Quadriplegic Cerebral Palsy, which is the most severe form of the condition. He also had severe epilepsy. He depended on me for absolutely everything and went through major operations to fix his hips and stiff joints.

Two Decades of Pure Joy

My husband and I devoted 20 years to him. We raised Muhammad like our own biological son. He attended school at Club Rainbow from age two until he graduated at eighteen.

When he was younger, we took public transport to school together every day. I would sit right beside his wheelchair for the entire session. Later, we switched to private transport for greater ease. We never once saw him as a burden. Caring for him has been an absolute privilege.

Cheesecake and Happy Holidays

Muhammad cannot speak and stays mostly in bed because sitting up hurts his back. He needs tube feeding these days. He could still eat soft foods in the past, and loved cheesecake from one specific cafe. He would cheekily reject cakes from any other shop. Seeing his favourite cake in stores today always brings back fond memories.

We took him on family holidays to Genting Highlands, Kuala Lumpur, and Malacca. We brought him to weddings and outings at Gardens by the Bay. I hardly ever went out for my own leisure, but I wouldn't trade those trips for anything.

Holding On to Hope

Due to legalities, I had to return Muhammad to a nursing home last year just before he turned 21. Now, I can only visit him for one hour twice a week. Along the way, I would organise a fun Children’s Day party at the home to bring him and his new friends some joy.

I would legally adopt him in a heartbeat if I could. The painful truth is that we simply cannot afford his massive medical bills. He needs to see at least four different specialists. Under the foster scheme, all these hospital expenses were fully covered.

This separation has been devastating for both of us, but I refuse to give up. I still hold on to the hope of bringing my boy home again one day.