Thursday, February 12, 2009

CHD Awareness Week - Post 5

To everything there is a season - as it were. I have recently gone through some cycles - not of grief - but I don't know what of. Maybe it is a little. 4 years ago, I was sad, and scared, and wallowing in "why me?" "why her?" I didn't find a community of likeminded people in the Hypoplastic Right Hearts Group until Zoe was about 2. I was so happy to find them - here were people who knew not only what it was like to have a child with heart defects (or have them themselves) but they knew what it was like to have the SAME defects my daughter had! Actually, they have have different defects, but they all resulted in a Hypoplastic Right Heart - what Zoe has. I think that was my phase of needing more support, because Zoe still needed her 3rd surgery, and I had a lot of questions about what that would entail, and how would I know she was ready, etc. Now that that is behind us, I am in a phase of "what can I do?" Actually, ever since Zoe was a baby, I wanted to do something. I saw how little awareness people had about heart defects - what they are, what they do, how you treat them, and how you can't ever really truly FIX most of them. I wanted to start a foundation of some kind to do that. However, as time went on, I found other resources out there advocating for awareness and research for heart defects. I think I still have no idea what I'm doing, but I think I want to start a chapter in Alaska or at least put on some fundraising here in Alaska and have the funds go to one of those organizations. The one I've been in contact with is the Children's Heart Foundation. I found out about them because they published the book "It's My Heart" (on yesterday's list of required reading) which I got from the Seattle Children's Hospital when Zoe was a baby. The Childrens' Heart Foundation raises money to fund research for CHD's, and so far they have their headquarters in Illinois, and chapters in Florida, California, Oregon, and a few others - but not very many. I need to recruit others in Alaska to the cause, so if anyone is interested let me know! :)

I also was wishing I could get involved on the advocacy front as well. Several heart organizations got together for something called Lobby Day in Washington, DC this past Tuesday. This event was a coordinated effort to have lots of people affected by CHD's go to Washington and lobby as many Senators and Congresspeople as possible for a bill called the "Congenital Heart Futures Act" which would set aside increased amounts for funding for research, a national registry, and have CHD's finally classified by the CDC as chronic disease that needs lifetime management and care. You'd think something like that would have been done already, but apparently not! I was asked if I wanted to participate because there was no one from Alaska already going, and they had identified our Senator Murkowski as a "key person" they wanted to reach. I of course was VERY interested, but then I got fired and so there was absolutely no way I could fly to Washington to take on the world. However - there is still hope! There's still the good old letter writing campaign. Still - it would have been cool to go.

It's late and I'm out of steam - night night - I have 2 more posts to go! :)

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