No one knows what our son is suffering from. Most doctors can only tell us that Yihong has developmental delay and that the cause is unknown. Yihong is six, but verbalising his thoughts is still foreign to him. He communicates with a mix of body language and a handful of words that he knows, like “there”, “banana” and “umbrella”. We have to observe his body language and behaviour to understand what he’s trying to say. Especially when he is unwell, it breaks our hearts that he cannot tell us where he’s comfortable.
During the first two years after I found out about my son’s condition were tough and would break down when talking about it. “Sometimes I would wake up in the middle of the night hoping it’s a dream I could wake up from,”
Luckily, my hubby and I found support from other families after we joined the Rare Disorders Society (Singapore) few years ago.
I still remembers the day when the first sign of trouble began showing during my pregnancy. We were told there was “excess water at the neck area of the fetus”. We did not worry as we were told that only a small percentage of babies would have problems because of this.
Yihong was born normal but at two months old, he suddenly stopped sucking milk, almost as if he forgotten how to. The situation was so dire that our doctor suggested tube feeding, something I adamantly refused to do due to the possible complications that come with tube feeding like infections.
I tried to coax him into drinking small amounts of milk whenever he cried, indicating he was hungry, by cradling and rocking him in her arms. A few months later,we realised that Yihong, then four months old, could be slower than his peers when we realised he could not even lift up his neck.
Yihong spent his growing up years crawling. During this period, we sent him for countless physiotherapies at KKH , NUH and SPD hoping one day he can walk. Indeed our hard work pays off, when he’s at 4 years old, he took his first few steps independently. It was the greatest gift I had ever since I gave birth to him.
Sometimes going out with Yihong can lead to unwanted attention from the public. Resting on his nose bridge was a pair of prescripted glasses to correct his shortsightedness — a refractive error of -8.00 dioptres in each eye, or what is more commonly known as 800 degrees.
I recalled an incident when a woman stared at Yihong’s glasses, before signalling for “a whole kampung of people” to do the same. “I told her that Yihong is wearing glasses because he reads a lot and will grow up to be a professor. She walked away. I think she was embarrassed,”
The doctors recommended us to take Yihong overseas for more tests, or to go for CT (computed tomography) and MRI (magnetic resonance imaging) scans. But the tests would just identify the cause but not finding a cure. Doctors told me the only way to improve Yihong’s quality of life is to go through therapies to improve his low muscle tones which are affecting his oral, motor skills, physical ability, eyesight etc.
From Yihong, we have learnt to take pride in every little milestone that he achieves.
“I think we are also learning from our son every day to not take things for granted,”
We are still positively waiting for the day that Yihong can speak to us.