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 thought ‘that’s it, that’s exactly how I can manage unhealthy stress better’. So many things can push in on us and wear us down. Serious health issues are a big one which can just be so relentless. But there are many, many other causes of stress too. If you’re looking for ways to manage unhealthy stress, then check this out.

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!

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.

Not knowing what is around the corner with our HeartKid has taught me that I can't run at 110% all the time. It's not wise for me to run at full capacity with no space left. If I'm already running at a 10, where do I go if tomorrow our son’s heart starts playing up again and I end up in the Emergency Department?

There are points in time where the immense pressure of dealing with our HeartKid’s condition and additional diagnoses (currently a rapidly growing list) is incredibly overwhelming. I feel like I’m suffocating.

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.