Awareness vs. Assistance

Every week is CHD Awareness Week for me. – Fellow Survivor on Twitter

Awareness of Congenital Heart Defects is the focus of the week, but what happens next? Hopefully we can convince mothers to be to give up any bad habit they may have and take better care of themselves, but too often there is no way to predict a Congenital Heart Defect (CHD). Most people feel genetics and environment combine to cause CHDs, but no one knows what the proper mixture is or what triggers them. It is so random that there is really no template – just a number. On average, 1 in 125 children are born with a heart defect.

And that’s when awareness isn’t what’s needed. We already know what a CHD is because the doctor just told us our unborn child has one, now the question in our minds is Oh God, what happens now?

That’s where groups like Broken Hearts of the Big Bend come in. They are the classic support group – folks who have been there before. They’ll be right there, holding your hand. Watching the clock with you during surgery. Another parent will be able to sit down with you and tell you what to expect, because someone in their family has the same type of problem with their heart. They know what it feels like to Walk the Hard Path, because they’ve all gone down that road themselves.

And they hold events like the Regional Forum, too;  so that their members can gather and talk to heart doctors over the course of a day, and not in the rushed environment of the doctor’s appointment. And they ask people like me to speak, because I’ve been there, too – but as a patient. I see things from a little bit different angle, and perhaps I can allow you to stand in my shoes for just a little while.

A support group is not a guarantee – no one can say “Do this, this, this, and the other thing and everything will be fine.” But they can help tip the odds in your favor. And you’ll have an advantage over my generation: we all thought that we were THE ONLY ONE. No support groups, no internet, and no clue that the CHD survivor family was slowly growing, because each one of us was in our own personal little hell. There is no one else like us – what did we do, God?

I hope you have made plans to attend. Because you aren’t alone. I plan to be liveblogging, so even if you don’t live in the Big Bend, just keep checking Adventures of a Funky Heart! on Saturday.

I don’t mind a bit if you look over my shoulder.


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2 Responses to “Awareness vs. Assistance”

  1. Rachael Says:

    It was the most adequate remark I could say about CHD Awareness week in 140 characters or less 😉 Great post, Steve!

  2. Tiffany Gilbert Says:

    I’ve always felt that way too. I too wonder why God choose me to be different. I’ve enjoyed meeting the two ladies I’ve meet and hopefully talking with you too. Like you said other people don’t know what we go through except others like us. Your friend Marylin and I have some things in common about some personal stuff that only women like us understand. It’s nice to have people to share stories with and know that your NOT ALONE! Thank ya’ll for all the support!


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