For a lot of families, the birth of a child is a joyous event – or, at least, it should be.

It’s a time for celebration, unlike any other. The hours and days that follow are a time when you begin to form and nurture that important bond. One that will last a lifetime.

But being told that your newborn child has a serious medical issue or disability is the verbal equivalent of “shock and awe”.

It leaves you rudderless, without purpose, and desperate for answers.

In the blink of an eye, your dreams for a fulfilling life are shattered and your plans are turned to dust.

Thoughts of playing ball with your 6-year old, or going on fishing trips, or relishing a dance recital are wiped out.

When I was told that Ben might not live the day he was born, I was devastated. Completely lost. Nothing made sense.

Before that day, I really didn’t know sadness.

I thought I did. I thought I had done all the right things and didn’t expect anything less than a perfect...