My son Filmer was born with pilocytic astrocytoma, a rare form of brain tumour. By the age of 10, he had gone through five brain surgeries.
We first discovered his condition when he was 2, after he couldn’t stop vomiting. He was unconscious when we rushed him to hospital, and needed immediate surgery. I was in shock when the doctors told me my toddler had a tumour bigger than a ping pong ball in his brain. It was 6cm wide.
He was heavily sedated during his first week in hospital. He regained consciousness only on the sixth day. But he needed a second surgery to insert a shunt to relieve the pressure in his brain. We were told to expect the worst. I was worried sick. Miraculously, he was discharged after three weeks, but he was not able to walk or talk.
My heart aches when I think of Filmer’s childhood. Those early years were filled with either hospital visits or therapy sessions. We took him to the pool as often as we could for simple exercises to help strengthen his muscles. He only took his first steps when he was 3.
At 5, he relapsed. We rushed him to hospital after he vomited and lost consciousness. He underwent another operation, and was discharged soon after. Two months later, he displayed similar symptoms and we were told his tumour had grown. It was 11cm wide.
He needed a fourth surgery, but we could no longer afford his treatment at a private hospital. We transferred him to a public hospital. The operation went well. I was so relieved that our prayers were heard.
The early years took a toll on us financially. We sold the house to afford Filmer’s medical bills. I gave up my job in car sales to spend time at home with my son, and moved to a more flexible job arrangement in real estate. My husband Galvin also decided later to quit his job in electronic sales, and now drives cabs to spend more time with the family.
We enrolled Filmer in a kindergarten run by the church we attend. The teachers knew of his condition and were patient and kind to him. He could understand simple instructions. But he was later assessed to be unsuitable for mainstream education. He stayed in kindergarten until the age of 8. He then joined the Rainbow Centre, a special education school for children with intellectual disabilities.
When Filmer was 10, doctors discovered that his brain tumour had grown and he needed a fifth surgery. My heart sank but I knew I had to stay strong for my family. No tears. Together, we would weather the storm. The surgery was a success and Filmer has not relapsed since. He’s now 20.
I’m grateful for all that we’ve been blessed with. Filmer has been doing well in school. He graduated in 2019, and was given an award for being an exemplary student. He’s picked up vocational skills through internships with supermarket chain Cold Storage and fast food restaurant Pizza Hut. Before the pandemic, he was also working part-time at a café.
A huge part of his growth has been due to sports. A classmate introduced him to Special Olympics in Singapore when he was about 14. He’s been training in bowling since, and has never missed a single week of training.
Being part of the Special Olympics family has not only improved his health and fitness, it’s also helped him become more confident and independent. His team-mates and coaches celebrate his every effort and achievement, and he’s never judged for his disability. He’s won several medals at national level games. Those moments of joy and pride are priceless. It has convinced everyone around him of what he can do.
We also discovered Filmer’s love for food, especially cakes. Whenever he scores a strike or wins a medal, he would ask for a good meal as a reward. Instead of giving him a fish, we decided to teach him to fish. My husband learnt to bake from scratch from a friend. We experimented with recipes at home, shared our cakes with friends and relatives, and taught Filmer to bake when he was 15.
Filmer has a slight disability with his left hand, and used to struggle with tasks like cutting fruits, cracking an egg or folding the batter. We sourced suitable equipment to help him with these tasks. After years of practice, he is now a confident and competent baker. It makes me smile when I see how our little family hobby has grown into a full-fledged online business known as Filmer’s Chiffon Cakes. The café where Filmer worked has even asked him to supply them with cakes. We now sell nine different flavours.
Looking back on how far Filmer has come reminds me of an incident from years ago. He was just 8. He was at a playground and a parent told her child not to play with him because he was different. We have put up with such behaviours over many years. People point, stare and whisper, but such incidents no longer upset us as a family.
I’m so proud of my child. It’s never crossed my mind to hide him from the world. Get to know him and you’ll realize how kind, sociable, fun and loving he is. If the world would just open our hearts and minds to children and adults like Filmer, we’ll all realize how amazing they are. Shun them, and you’ll never know what you missed.