As many of you know, my eldest child ,James, has Duchenne Muscular Dystrophy. It’s insidious, it’s progressive, it’s a degenerative muscle-wasting disease, it’s incurable, and it’s terminal. He was diagnosed on Father’s Day, 2006, only 5 days after this photo was taken. On this day, August 29 2006, we were getting ready to fly back home to Singapore that evening and took the 2 kids down to Manly Wharf. We were so happy back then, relatively worry-free, and planning a great future with our two beautiful children.
Five days later and everything came crashing down. From such a high to such a despairing low in a matter of days – it’s something I hope you never have to go through yourself.
It was around 6 months later, when we started coming out of that deep dark hole we had retreated to, that I sat down and wrote this poem for my son. My perfect son. And to this day, I mean every word. We will never give up.
MY BOY, MY SON.
You were born on a Saturday, on a day so fine
I saw you, I held you, I loved you, you were mine
You had 10 tiny fingers and 10 tiny toes
Two perfect dimples and a sweet upturned nose.
Your daddy, he was besotted, he’d never known such joy
He’d waited his whole life for you, his perfect little boy
He’d show you the world, how to surf, how to ski
Someone he could teach to become a better man than he.
The months went by and you grew so fast
Little did we know of the shadow that was cast
You rolled, you sat, though you never did crawl
When you started to walk, you would always fall
We knew no different, you were our first you see
When you continued to fall, we just thought “he’s clumsy”
It wasn’t until Number 2 came along
We realised that something was terribly wrong
Your sister grew fast and soon found her feet,
She ran rings around you outside on the street
Alarm bells rang, we thought physio was all
You would need to climb stairs, start running, stop the falls.
On Fathers Day, at age two, we took you to see
An elderly doctor, a regular kids’ GP
“He has muscle disease”, he said with a smile
I felt sick to the stomach, I could taste my own bile.
First reactions were shock, hate and anger, despair
Life really sux, life just isn’t fair.
“A death sentence?” I asked, and I started to cry
I could not understand. Why my son? Tell me why?
So they’ve told me you’re sick, they’ve told me you’re dying
Since that moment I heard I haven’t stopped crying
All those hopes, all those dreams we had planned from the start
I thought they were gone. It was broken, my heart.
Daddy and I spent the next months in a haze,
Kept hoping we’d wake from this dream, from this daze
When you were around in the day, we’d smile and be brave
When you went to bed each night, our demeanour would cave.
But we couldn’t keep going this way, this we knew
We had to make our life full of great times for you
No more wallowing in sadness, no more anger or hate
We won’t watch you die, we won’t sit around and wait.
So we’re fighting for you, for your future, your life
So you’ll grow up, be strong, fall in love, find a wife
Have kids, travel widely, be happy, know true joy
And look back fondly on your time as a boy
We’ll never stop fighting, one day we will cure
This disease and we’ll save you, of this I am sure.
I’ll love you always, for infinity plus one
You’re my perfect little boy and I love you, my son.