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.

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.

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.