|Josh and the big sister of another Heart Warrior who befriended him during his last surgery|
Today I have some 'Mummy' time, a rare treat but one that I relish in. Yet as I sit here I find myself researching for CHD awareness month. I read one heart Mom talk about about what CHD means to her... a line struck me. She said CHD means that my kid is amazing, miraculous, brave, strong, wondrous but not cured. I let that sink in and in an odd way I was touched by it. It's so true, Josh is a lot of amazing things but he is not cured. I think it's one of the most important things for you to know about kids with CHD, because though they run and play and laugh and smile and giggle and fight they do all of it with a broken heart.
I cannot count the times that Tim and I have been asked 'is his heart fixed now then?' after every surgery we have to again explain that 'no, it's not fixed'. The best that anyone can do for a child with CHD is to 'buy them time'. Josh has been bought time, tax dollars have bought him time, but as of yet, they have not bought him the guarantees that so many people want.
The words 'no cure' were a shock for me when I heard them the first time, in fact it wasn't until his second surgery that I really began to understand that there wasn't a cure for what ails Josh. I was in denial I suppose. After every catheterization, after his first surgery and even in the immediate days following his second surgery I believed that this time it would work, this time they will 'fix' his heart. Tim jokingly calls me unrealistic, while I call him a cynic, but the real truth is I was an eternal optimist living in hope and expectation and yes, in full and utter denial. CHD has NO CURE. There is no fixing his heart, it's forever broken, it's never going to be 'normal', he will never grow out of this disease, and when all is said and done it will probably the murderer of my son. Knowing this, facing this, has been a journey unto itself.
Knowing that the only way my son will ever have a whole heart would be a transplant, that is something that breaks my own heart, and yet as 'heart moms' the world over know, there is not a moment that we would trade. These are our children, CHD can strike any family, any time, and the more we get the word out there that this viscous killer is looming, ready to snatch our children, the more hope we have that one day there really will be a cure, or better yet prevention.
I have been blogging all month about CHD awareness, I have been posting stats. on facebook and working with organizations trying to get the word out, trying to get people to stop and become aware, because with awareness comes hope, and with hope comes research, education, answers. I am not trying to ram this down your throat, I am simply hoping that you will join me in this fight, I am not asking for money, I am not asking for more than a few moments in your life. Share this post, re-post it, read up on CHD and what it means to kids like Joshua.
As I struggle with raising awareness I have never felt more alone, more frustrated than ever before. I won't give up, I won't stop until I know that I have done everything I can to help kids like Josh, those here and those who are not yet born, so that when they turn 18 they aren't forgotten to a system not ready for them, so that the need for repeat surgeries is lessened, so that the scars they wear are badges of honour in other people's eyes rather than something to stare at at the swimming pool or beach, so that less kids need to die at the hands of this monster.