The moment

My world was changing before my very eyes and I didn’t even know it.

I did but I didn’t.

Not to the point that it has.

Not to the point where it impacts me day in, day out.

Not to the point where every moment is lived with a knot in my stomach, with a thin layer on top covering a depth of emotion that I didn’t even know existed.

It was the moment that changed so many things.

It feels like the moment that divided my life in two: life before the diagnosis and life after.

It was the moment that divided my son’s life in two: his first 19 days, and now his five years since.

It was the moment that threw our family into world of chronic critical illness that we knew nothing about.

It was the moment when I started living life with a lump in my throat.

How one moment can change so many things.


The room was spinning.

It feels like a total blur, but also so clear.

I can remember so much but so little.

A cup of ice in a polystyrene cup. Anything to hold, suck or drink to distract me from this nightmare rolling out before my very eyes.

A 4 bed room with patients, other parents, nursing staff, hospital visitors and doctors walking past and watching on while the cardiologist and the technician worked out what was going on.

Tears rolling down my face while I look at my baby, in total shock with what was going on.

My hands were shaking and everything felt slow, yet fast.

I could hear everything, but none of it made sense. It was just a mirage of words that I didn’t even know existed.

It was just after 5pm on Tuesday 23 July 2013.

Half an hour before, my husband and I were having coffee in the hospital cafeteria with my brother. And now here we were being told ‘you’re next 5 years are going to be shit’.