What’s With Down Syndrome?

Tuesday, October 24, 2017

October is Down Syndrome Awareness Month in America. Riding on their campaign, I'm doing my part over here to raise awareness and spread some love for people with Down syndrome, one story at a time. For this special month, I invite you to hear from my friends in the Down syndrome community in Singapore. Today, we have one of my favourite families on my blog to share their story. 
Guest contributor:
Tham Cheng-E

We have 2 kids at 16 months apart—2 boys to be exact—2 little whirring Tasmanian devils whose favourite hobby is to re-decorate our home at least twice a day. Once in the morning, once after dinner. The older one leads and the younger one follows. One leaves tracks and the other erases them. So by the time we—the groggy old pair—stumble out of the bedroom, we could never hope to find the culprit. We’d lament, berate, and they’d simply stand guilty, arms extended, fingers raised at each other.

The picture of a typical family. But with a slight twist. Amos, the younger of the two, stands at half his brother’s height. His head circumference is probably half his brother’s too. He smiles more than he scowls and he dances better than any kid of his age. You’ve guessed it.

Amos has Down syndrome.

Like yourself perhaps, we’ve had hopes for our children. We’ve dreamed of a little two-on-two football match, we’ve told our older son, Joel, how much fun his brother would be when he popped from Mummy’s tummy. We told him how he’d attend the same schools, play the same stuff, read the same books, race each other and laugh at the same jokes.

Just a few months ago, Joel had begun discerning the differences, and asked, “Why can’t Amos talk like my friends do?” And we’d tried telling him then what Down syndrome was.

Like yourself perhaps, we’ve felt how hard the turn was, how sharply we’ve rounded life’s bend. Everything went topsy-turvy, like salad shaken in a bag. Suddenly we weren’t sure of anything anymore. We couldn’t see any order, or anything ahead of us but grey mist. There wasn’t any future to speak of. Everything went dead. And as dead they’d be, until we saw what was behind that mist.

Now, 4 years on, we can only tell you one thing: if we had the chance to relive everything we wouldn’t change a single thing.

A glimpse at Amos’ joy and exuberance is enough to make people wonder how preposterous it was then, 4 years ago, when they had advised us to terminate the pregnancy.

We aren’t going to romanticise this. The early years were tough. Amos had a slew of health issues; aspiration (medical term for inhaling small particles of food or drops of liquid into the lungs), heart surgery, pneumonia, sleep apnea. He was tube-fed, slept with a respirator, hospitalised so many times he ended up enjoying the hospital bed more than his own. He’d get us to elevate the upper half of the bed, and he’d play slide.

Each time he bounced back a notch stronger, developed a peculiar affection for not only the hospital bed but also the nurses and doctors. It was our perseverance training and we have learnt to keep the faith for ‘this too shall pass’.

Today, Amos’ heart beats strong. He is off tube-feeding and he is starting to swallow fluids properly without getting them in his lungs. Just last month the preliminary results of his fourth sleep study appear promising. Pending the doctor’s assessment, he might be taken off the respirator.

It will pass, all of it. What matters is how far we take this; how best we make of it. And in case anyone thinks it isn’t worth the effort, it’s worth every bit. It is a once-in-a-lifetime opportunity to give someone a shot at life, and in return, this little life shows us how inadequate we are compared to them.

Regardless of the circumstances, Amos never fails to return a smile, offer a hug. At difficult moments he warms us with a pat from his pudgy hand, a playful headbutt. He readily forgets the flashes of anger we dealt upon him, our enraged, disdainful stares. Why couldn’t you understand this? In our hearts, we’d ask. And he’d shrug and smile, and his disposition would say, why couldn’t I not understand? I have Down syndrome. Give me time, I’ll learn, and I love you anyway.

He shows us how inept we are in loving unconditionally.

Children with Down syndrome are developmentally slower, but given the right opportunities and time, they will learn and thrive. Amos has surprised us on a few occasions with what he can accomplish. In our house, we celebrate the small things. Every little achievement—the ability to drink small sips of water, to chew on food, crawling, walking, saying his first words—things that occur naturally to neuro-typical kids. Amos’ achievements are so precious because we know how much hard work goes into it. My wife cried tears of joy on the day Amos demonstrated the ability to suck liquid from a straw. We have learnt to not take anything for granted.

The journey isn’t over. Amos still has to be toilet-trained. He feared the potty, and has taken to hiding himself under the duvet to poo in his diapers. Just last week he did, and had the poo seep through his pee-jays and smear all over the bedroom.

Yes, all over—his bed, his brother’s bed, the pillows, soft toys, the floor on which he bummed and rolled. And through Amos’ acrobatics Joel played silently on, completely oblivious to the gathering stench around him.

And yes, you’ve guessed it again. It happened on a lovely morning and the groggy old pair woke up and hell broke loose. It was manic, painful. You couldn’t help thinking how great it would’ve been if things had turned out differently. But they didn’t. God has given us enough to raise this child, and has shown us His faithfulness in the challenges that came and went. This is but another.

So take heart, I shall say this to you as much to myself. Love, because this is the fundamental and unchanging reason behind our decision to have children. Special or not, it does not matter.

And poo? Well, it’s just poo.

About Cheng-E

The overgrown kid of the family, an architect by day and author by night. Cheng-E also maintains a family blog and writes for the online magazine Special Seeds.

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