Yesterday I took our daughter and our HeartKid to Chadstone and coincidentally the Teddy Bear Hospital was on. Given that the kids spend a fair bit of time visiting medical clinics and talking about health, I'm always quite surprised that they want to do things like the Teddy Bear Hospital. But they were keen as.

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.

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.