What a day it has been!


Today has been a thrill a minute… The phone hasn’t stopped ringing. E-mails have been flying back and forth.

Senator Durbin is introducing the bill today!

Has he done it yet? There’s nothing on THOMAS (The Library of Congress’ website that catalogs Congressional legislation)

No, not today…

Yeah, today! In fact, there’s a press release on the Senator’s website!

Still nothing on THOMAS! What’s the press release say? Do you have a link?

Anything on C-SPAN?

C-SPAN?!?! It’s just being introduced, let’s not get ahead of ourselves!

In the middle of the afternoon I was at wit’s end, and I needed to back away for a moment. So I shut down the computer, took the phones off the hook, hid my cell phone, and stretched out for a few moments.

And I got to thinking about it: If we get this thing rammed through Congress, then there isn’t going to be any more children like me, way out in the middle of nowhere with no idea what is going on inside of their body.

No more 500 mile drives to a hospital for a checkup.

No more parents wondering if this cold is going to turn into something that their child can’t fight off.

I thought about meeting so many adults with CHDs in Philadelphia, and how many of them had felt just like I had — all alone. And now I have dozens of new friends, and they all know how I feel about them, because we’ve all been there. We still Walk a Difficult Path, but now we know that there are others out there, too. And I thought about that day just a few weeks ago when 200 of us hit DC like a Kansas tornado.  And the new friends I met there, too.

But what a day it has been! A wonderful day! OUR day. So for tonight’s party the group is Bond, in a live performance.  We’ve all got to get back to work tomorrow, but tonight, let’s shake the house!

The song is just for us: Victory!

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