Down syndrome was an issue we were aware of but never understood. We had been part of a society that had once considered it taboo. And like most people we gazed at it from afar because we never had the courage...

...or the reason to get close.

It simply wasn’t relevant.

Until it happened to our precious second son Amos – now a sprightly three year-old who smiles more than he scowls and dances to anything musical.

It wasn’t like that from the beginning.

At birth he asphyxiated because the water broke before he was ready to meet the world. His lungs hadn’t yet learned how they ought to behave and Amos came out limp, blue and silent.

The nurses were so frenetic that they did a football-huddle around his tiny body and did their best not to look at us while we were desperately trying to look at them.

We rejoiced when we heard the first cry.

It was strong and furious, and nothing in it suggested anything about Down syndrome. We forged on and told ourselves he’d have to be raised like any other kid and be no different from his brother. Then there were the developmental delays; the perpetual dribbling, the inability to chew, to swallow, to breathe, to sleep. And in came the surgeries, the feeding tube, the respirator machine (CPAP) and so on…

Amos was learning to crawl when his brother, at matching age, would already be pattering up steps and shooting off the slide. At the age when most kids are stringing complete sentences Amos was still drenching up to three bibs a day with his drool.

Sometimes Amos appears to be grinning at everything. Sometimes Amos gets so caught up in himself he doesn’t even realise he needs food. Sometimes Amos just felt so different to us.

One day I was in an awful mood for many reasons. Amos had (expectedly) ignored our countless reminders to close his mouth and swallow his saliva. He drenched not only the third bib of the day but also the tape that held his feeding tube in place. The tube came loose, and Amos was pleasurably drawing it in and out of his nostril like the bow of a violin.

"We were rushing to leave the house and now I had to waste precious time re-fixing the feeding tube in place. I drew out tissue papers and dabbed them over Amos’ lips and face much more forcefully than what was required of the job. Every brusque swab from my hand was an act of spite, an attempt to vent my frustration, to lash out at the inconveniences that defined our lives. 

When it was done I turned my attention to cutting a piece of tape. And when I turned back to Amos I found him glaring at me with such acrimony I never knew he was capable of. And he held it firmly in place, as any maligned individual would.

Then he tore his gaze away in a slow, infuriated blink. He turned his head aside and laid his plump little chin on his crossed arms.

A second later he threw me a sidelong glance and tore it away with that same slow, infuriated blink. He did it again a second later. And again…and again…

I touched his little shoulder and he pulled it away and leaned away from me. I teasingly lowered my head to catch a glimpse of his face and instead caught the glint in his teary red eyes. His lips had the distinctive downward curl. His breaths were coming fierce and fast.

And his disposition said: “What did I do to deserve this?”

I was convicted on the spot. I had given Amos a round of bullying and expected he would placidly take it all in. But he fought back with such dignity and restraint that made me realise how lowly I had become.

Joel, our elder son, would have swatted my arm if I had attempted to clean his mouth so spitefully.

I loathed to admit but even as a father I am guilty of relegating our dear Amos to the stereotypical impression we had of special individuals. In the brevity of that moment I had thought so little of not only Amos but of the entire Special Needs Community. I failed miserably to see beyond their differences.

Because they are not so different after all.

We have always stood by the rule that a hug follows a round of discipline. Whenever we hugged Joel after a teary episode he would sometimes reciprocate with a half-hearted one because he would still be sore over the matter. Especially if it was he whom we maligned.

That day I hugged Amos and apologised profusely.

He wrapped his pudgy arms tightly around my neck and returned a huge, unreserved embrace. I felt little pats of his tiny hand on my back and it was my turn to go all red and bleary.

And when I pulled away from Amos I found him grinning so wide his eyes disappeared. 

I could not recall any individual who had a shorter turnaround time than Amos.

In a society rife in spite and anger that so often tempts us into nurturing our grudges and bitterness, this incident illuminated an enduring trait I wished I had – unreserved acceptance and forgiveness.

And I believe in this respect individuals with Down syndrome fare much better than any of us.

This little anecdote is a wake-up call. It shows me how much I discriminate and how hypocritical I could be in thinking otherwise. It tells me there is still so much to which I fail to measure up. It is an invaluable lesson learnt, and if only we would bother to observe and understand, we could learn so much more.

C E Tham

Through blogging and social media, CE Tham and his wife hope to share about their parenting journey with their older boy Joel and his younger brother Amos, who was diagnosed with Down syndrome at birth.

CE Tham and his family can be reached at thumbs.sandals@gmail.com or at their blog.

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Video Spotlight

Credit: A video by Channel 5

Credit: A video by Trixie Chua & Celine Kim for Special Seeds Singapore.

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