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.

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.

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.