It’s been a frustrating weekend. First, I had to turn down a meeting with federal officials as an Adult Congenital Heart Association (ACHA) representative. If you remember, the Funky Heart and ACHA President Amy Verstappen appeared before a Social Security Commission policy conference in September of 2008. Amy spoke on behalf of the organization while I said a few words as an adult living with a heart defect.
We’ve been invited to appear before the Commission again, but the meeting is on a Monday morning. I would have to fly up on Sunday, and the regional airport I use must take Sunday morning off – the earliest I can get a flight is 3:30 PM! It doesn’t matter how much I try to juggle the schedule, I can’t work around that departure time. So I had to call the ACHA office and tell them that I just couldn’t do it.
The second thing that went wrong is I had to turn down a speaking engagement because of family obligations. I’d love to go, but the family thing has been planned for a month and I promised I would be there, so that decision was pretty much made for me.
I really hate to miss these events! When we get a chance to work at the Federal level, we’re doing something for every American affected by a Heart Defect – the Social Security policy conference is attempting to rewrite their guidelines about considering a Congenital Heart Defect (CHD) as a disability, and we’ve been asked to provide expert testimony.
But I really hate having to turn down the speaking engagement. If I had been able to accept it, I would have been speaking in front of a small, local group – no more than fifty people. But this is “where the rubber meets the road” – these local CHD support groups is where 95% of the support starts.
This is who you call when your Cardiac Kid has an unexplained fever in the middle of the night and you aren’t sure what to do. These people are the ones who will sit all day in a hospital with you during surgery. When you get that first diagnosis and you don’t know hearts from a hole in the ground, all you know is that it sounds really bad, these are the people who will sit down with you and talk you through it. And its this group of people who are going to be there when you need them.
The Federal government can’t do that. A large national organization can’t do that; but the local chapters will. And they are very good at it – because they have all been there and done that.
Speaking to the Social Security Commission is important, but doing something on the local level is even more important. Your local CHD organization is where you can do the most good.