#MumStory: “My Son Should Not Be Defined By His Down Syndrome”

#MumStory is a series by The Singapore Women’s Weekly to uncover the underrated and underreported moments in motherhood, parenting and everything in between — because we believe every mum has a story worth telling. Got a story to share? Email us at sww@sph.com.sg or slide into our DMs on Instagram.

As a mum of a child with special needs, Belinda Khoo admits that resentment is a familiar feeling. The emotional uprising isn't directed at anyone, but at the circumstances surrounding raising a baby with Down syndrome.

While her husband works long hours to provide for the family, Belinda is a stay-at-home mother who shoulders caregiving responsibilities.

It's also hard for her to connect with other parents who don't face the same challenges, adding to her feelings of isolation. 

“I’ve also had to confront the grief of unrealised expectations such as missing those precious early days of snuggling my newborn because he had to be in the NICU,” the 33-year-old shares. “I'm filled with envy when mums in my WhatsApp chats talk about their babies hitting milestones faster, or when a baby on the MRT responds eagerly to my "peekaboos". 

“I can't help but wonder when my son will do the same. I worry about the future; whether he’ll be able to live independently, have meaningful relationships or find fulfilling work,” she adds. 

Belinda's son was born in January 2024. When markers of a chromosomal disorder were detected during her 13-week pregnancy scan, Belinda and her husband were “heartbroken by the news”. Nevertheless, the couple made an informed decision with the help of their doctor to continue with the pregnancy. 

Belinda turned to Instagram to connect with other families who have children with Down syndrome. She wanted more than the statistics and negative predictions that an internet search could offer.

“I craved real-life stories that showed both the challenges and the joys,” she recalls. “Through these Instagram accounts, I saw how deeply loved these children are, how fiercely their parents advocated for them and the types of extra support their babies needed. 

“I felt encouraged and empowered, knowing I could do the same for my son. After all, I’m his mother – his biggest cheerleader,” adds Belinda who wishes to expand the brood in time to come.

Read on for her #MumStory.

How has caring for a child with Down syndrome shaped your life and parenting views?

This experience has made me more inclusive of others and more aware of the diversity of the human experience. It has shown me that every person, whether specially-abled or not, has their own unique story.

As a parent, I feel more receptive to seeing, valuing and embracing my children for who they are, not for what they can achieve. In my son's case, his diagnosis is just one part of who he is, much like the colour of his hair or his favourite food. It does not – and should not – define him. I’ve also developed a stronger belief that the foundation of a child’s potential lies in what we, as parents, believe about them. With appropriate and unwavering support, they can achieve far more than we sometimes imagine, regardless of their varying abilities.

What sort of resources have you tapped into to manage his care?

We are fortunate to have strong support from our public healthcare system, which diligently ensures that all our son’s needs are met. His paediatrician, who co-leads the Down Syndrome Clinic at KK Women's and Children's Hospital (KKH) sees him bi-annually and has referred us to specialists for conditions that children with Down syndrome may be more prone to for close follow-ups. These include clinicians in cardiology, ear, nose and throat, ophthalmology, and physiotherapy.

Currently, our son attends monthly rehabilitation sessions at KKH, and we are on the waitlist for the Early Intervention Programme for Infants and Children (EIPIC) provided by the Early Childhood Development Agency (ECDA). We also participate in weekly playgroup sessions at the Down Syndrome Association, which have been an invaluable source of support on our journey. 

How do your husband and daughter help you through your parenting journey, especially on tough days?

My husband always makes a conscious effort to be present when he’s home. He is the bringer of fun and laughter in our house and definitely the one the kids go to when they want to let loose! He offers a listening ear and is great about stepping up with the practical aspects of our daily life, whether it’s helping with chores, looking after one of the kids while I’m focused on the other, or giving me a much-needed break. His calm demeanour is grounding, especially when I feel overwhelmed on tough days.

My daughter is such a huge help. I’m honestly so thankful for the seven-year gap between them. Her independence has made a big difference in lightening my load. She has an intuitive understanding of when I need help and, without being asked, will soothe her brother or keep him entertained so I can catch up on my to-do list. Her radiant energy and deep bond with him serve as a daily reminder of the joy that’s always present in our family, even on the hard days. 

Do you have a village to fall back on when you need a rest or fall sick?

I’m not sure I’ve ever really had a true break from stay-at-home mum duties, unfortunately. But for the most part, my husband is the main person I rely on. When he’s unavailable, my mother steps in to help with the children. I also have a few close family friends I turn to for support with my eldest.

Any plans to return to work in the future?

Before having my children, I was a restaurant development and operations manager, as well as a formally-trained pastry cook. Now, I’m looking to start my own business so that I can have the flexibility to care for my son while also financially supporting our household alongside my husband.

How has being the main caregiver of a child with Down syndrome affected your mental health?

When we learned that our son might have Down syndrome, I was overwhelmed with guilt, wondering what I might have done wrong, especially when people pointed out that I was still young and the odds of having a child with Down syndrome were low. As my son's primary caregiver, I feel the weight of every decision regarding him. The responsibility of making the right choices, even after hours of research, can feel overwhelming.

I often fret that I’m not doing enough for him, while also feeling stretched thin balancing my other responsibilities at home and with my first child. When I can’t control certain outcomes, I find myself overthinking or excessively worrying about the future.

Compounding this anxiety is the external pressure of responding to others' judgments and assumptions, which has affected my confidence in making more mum friends. When people interact with my son, expecting a certain response and when his reaction doesn’t align with their expectations, I notice a subtle shift in their demeanour. Navigating those puzzled stares and awkwardness is tricky – I often feel compelled to meet an unspoken expectation to respond or explain. This is even when I believe no explanation is necessary, or I’m unsure how to handle the situation in a way that protects my son’s dignity without inviting unsolicited advice or offending the other person.

How do you take care of yourself? What does self-care look like for you?

I make the most of the time my daughter is in school by going on morning walks in nature and attending yoga or pilates classes that allow me to bring my baby along. I’ve also become more intentional about practising gratitude, which helps me reconnect with my purpose, find joy in tough moments and see the light in the midst of it all. Additionally, prayer offers me strength, comfort, faith and perspective.

Spending time as a family also fills my cup and we make an effort to be outdoors whenever we can. I’ve also taken steps to broaden my social circle by joining mum communities and attending events, which has been beneficial for both me and my son. I love musicals and theatre so when I get rare moments of alone time, I treat myself to a show. However, the best thing I’ve done for myself recently is going for weekly counselling. Looking ahead, I hope to find more time to read again – especially books that aren’t about parenting – and to pick up journaling.