Thursday, February 14, 2013

CHD Awareness Week wrap-up

It's finally the last day of CHD Awareness week 2013.  You know how the last day of Keegan's first week ended.

With a miracle...

While that first week was finally over, and Keegan's broken heart was replaced with a perfect one, the battle for his life was truly just beginning.  If you have followed Keegan's journey over the last five years, you know that his story is much, much more complicated than his complex congenital heart defect.

I'm somehow amazed every year how much this week of remembrance and advocacy takes a toll on me.  Obviously, having to relive that first week is nearly as harrowing as the first time.  Then, I realize what a big job lies ahead of us in the world of congenital heart defects - research, surgical advances, early detection advocacy, and more.  I remember all the friends we have made on this road.  More importantly, I remember the ones we have lost.  And it's overwhelming.

But we will continue to tell Keegan's story.  We will continue to share the importance of screening for heart defects before birth in order for parents to be able to research options, create a plan, and prepare emotionally.  We will continue to advocate for pulse oximetry testing for all babies immediately after birth in order to give children with undiagnosed defects a fighting chance.  We will continue to remember the angels who have gone before us bravely fighting a war against their own hearts.  And we will be grateful for every day we have together with our own heart warrior.

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