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. Very few understand how it feels to ‘live life with a lump in your throat’. And this is good. This is not the kind of life I would wish upon others. It’s stressful, draining and puts strain on your closest relationships. It limits your ability to make long term plans. It makes all the usual parenting struggles feel so insignificant, even though they’re not. It can be such a conflicting and lonely place to be.
But we’re not alone. We’re actually a whole community of people who share similar struggles. Before having a HeartKid, I think if I’d ever had to visit or attend our closest children’s hospital I would have felt so overwhelmed. Now, it feels like the parents I see there are my allies. We may not speak to each other but we know. We may sit on our phones trying to distract ourselves from the stress but we know. We may both be trying to figure out the hospital’s new check in system and we know. We may be buying our kids some ridiculously expensive helium balloon and we know.
We know that we may walk into our next cardiology review living a relatively ‘normal’ life, but we may also walk out facing the next round of open heart surgery. We know that the next diagnosis could change everything. We know that even though the balloons cost $50, they are the one small thing our kids look forward to when they have to endure yet another round of doctors poking, prodding and talking about them. We know the struggle and the pain of juggling family life when our other kids seem to miss out because, unavoidably, one child gets so much more one-on-one time, even though it may be at medical appointments. We know, without having to say a word.