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.