How do you put into words what something means to you, when that something has changed your life so completely? Until 5th February 2015, I’d never given much thought to CHD. I was aware it existed (although completely unaware just how much it existed, or how many different forms there were) but I hadn’t ever contemplated the possibility of it happening to us. And then it did. And everything changed. And now it’s a firmly ingrained part of our lives, a part that we don’t want to define Samson by any means – we don’t want his life to be ruled by his CHD, we want him to strive for everything he wants to achieve and to push his boundaries, but to be aware of his limitations – but it has absolutely shaped his life, our lives as a family, and it will continue to do so as he will always need cardiac monitoring and care.
So what does it mean to me? It means a whole new language, a
new way of life, a new set of guidelines and rules. It means a new family, new
friendships, a new community. It means warriors and heroes. It means strength,
hope, love. It means devastation. The CHD family as a whole mourns whenever one
of our warriors doesn’t make it. And we celebrate each other’s victories, and
we support each other when times get rough.
CHD is not something you’d ever wish for, nobody wants to
see their child suffer. But at the same time, I feel honoured and blessed (and
I think that word is overused, but in this case it’s true) because not only do
we have the most amazing son, who has taught us so much about life and what it
means to be brave, determined, and strong, we’ve also met and formed bonds with
some incredible and inspiring people along the way. It has given me a drive and
a purpose to help those who find themselves in the same situation we did. It’s
a scary, scary place when you’re first faced with it, but once you’re part of
the family you realise you’re not alone.
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