The importance of community helping people survive tough situations has been reiterated in a huge way at my local level this past week. When tragedy strikes, it’s quite powerful seeing people band together - to support each other, to pray together, to cry together, to sit and chat. The importance of the time we have right now becomes so real.

Both short term and long term support is needed when crisis hits. Because crisis doesn’t last forever, but the ramifications and flow on effects often do.

What is it about our Australian culture that make us feel the need to speak? What is wrong with silence? Or just a hug? Or an ‘I’m so sorry’? Why do we feel the need to make people feel better, when there is nothing that can actually make them feel better at that particular moment?

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.

Is the answer to run away and not say anything to someone in crisis? Avoid them at all costs? Never talk about their illness, sick child or family member? NO! People in crisis NEED YOU!

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.

One of the absolute best things that has come out of our family living with Congenital Heart Disease, is the fact that we tend to live with a mentality of 'why not?' rather than think of all the reasons why we shouldn't do something. It's like since we came so close to losing our HeartKid, my husband and I have subconsciously decided to make the most of life while we've got it.

Diagnosis of a critical and chronic illness is an incredibly traumatic thing to experience, and I still find it hard to write about. Somehow, my husband and I managed to put this video together for our HeartKid’s dedication in 2014, which coincided with his 1st Birthday. This video will give you a good insight into the trauma of diagnosis and how life was for us 5 years ago.

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.

Five and a half weeks ago our son was born. He was incredibly settled and fed well. My husband and I couldn't believe how lucky we were to have another really easy baby. Our daughter absolutely loved him - a completely smitten sister.

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.