I don’t know if it’s just me or not, but quite often in life I forget to have fun. The kind of fun that makes me feel young. That makes me laugh so hard my belly aches. The kind of fun that takes my kids and husband by surprise. I get so caught up in the day-to-day monotony of life, that I forget about fun.

But, every now and then I decide it’s time to surprise my family.

I find myself sitting in the same surgical waiting room at The Royal Children’s Hospital where we sat waiting to take our son into his second Open Heart Surgery. Today it’s just a meeting with an anaesthetist for some dental work, but walking in did make me take a short breath and catch myself. I wasn’t expecting today to be a day of flash backs.

Today was one of those days that I used to have all the time, until my husband and I decided we would share our workloads better. I DO NOT miss them.

We were doing the school drop off yesterday, when our HeartKid randomly came out with:

“My biggest worry is my heart surgery, Mum. I hope I die before my surgery so I can go to heaven and have a heart that doesn’t need fixing anymore.”

And his eyes welled up with tears, with a face full of sadness.

This is the sort of every day stuff our HeartKid shouldn’t be able to do. He has severe leakage of his aortic valve and mild left ventricular hypertrophy. He’s had 2 open heart surgeries already and we’re waiting on the next one, which is going to be huge.

For 5 years, I’ve been struggling to cope with our 5-year-old son’s heart condition. Yet now it feels like I’m moving into a new stage. A stage filled more with hope, story sharing and helping others, rather than the all-consuming internally focussed survival mode that I was thrown into 5 years ago. My hope, really, is that by sharing this part of my story, other families facing chronic critical illness may realise they’re not alone.