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.

When things get too overwhelming and I need something to help me get back up again, this is my go to song.

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.

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.