Pulling on my heart strings..

Not sure where to start with this post.  Just feeling a bit "blah" and worried.  We never asked to be in the "heart community." It's not something one really strives to be in.  You don't choose it.  It chooses you.  Today, I wish it hadn't.

Don't get me wrong.  I'm thankful for the lives the Lord has chosen to cross our paths with.  We have made some dear friends through Ethan's diagnosis and hospital stays.  Ethan is doing GREAT!  But, we are part of a family now- one greater than the typical family tree could contain.  When the surgeon delicately took a scalpel to Ethan's tiny chest, our lives became intertwined with families the world over.  Actually, I'd say when the pediatrician called to tell me of what they saw on Ethan's echocardiogram the MORNING WE WERE TO BE DISCHARGED was the moment we became card-carrying parents of a kid with a "CHD." "1 in 100?"  We had no clue how many families were going through or had already been through such devastation.  This was our baby!  Our (seemingly) perfect baby boy!  In the words of many, "How could something that looks so perfect be so sick?"  It was almost like a cruel joke.

Through our journey, we have learned so much.  Firstly, we know a lot more about the anatomy of a heart!  Secondly, we know that we are lucky.  Ethan's defect(s) could have been so much worse.  His outcome?  Twenty or thirty years ago, there wouldn't have been much hope.  Send him home to peacefully pass in his sleep.  Have any of you watched "Something the Lord Made?"  WOW- so thankful we are living in a time such as this where teeny tiny hears being operated on is nothing new (though still challenging and techniques/innovation change day to day).  If you saw him running around, you would never even know he'd had his heart cut open and worked on, TWICE! He's a madman!  Just tonight, he was doing almost back-dives off the arm of the couch (ok- back dive- singular! Once I saw him do the first and nearly had a heart-attack myself, I nipped that one in the bud!).  Other families?  Not so fortunate.

While this community is great for the times you need support, it's also tough because every day, you read a story (or more) of a little one who may not make it (or didn't).  You are reminded that life is precious and not fair.  You find yourself constantly pacing a virtual "waiting room" while checking for blog updates or Twitter posts or Facebook statuses just to make sure everything is ok.  You hug your own "heart baby" tighter and sometimes wonder if everything truly is ok beating inside that tiny chest.  You pray and ask God's comfort for things you don't quite understand and marvel in the strength He's given to you and others to get through things like this.  You cry.  You pray.  You cry some more.  You sometimes even get mad.

Tonight, I'm approaching the throne on behalf of Bowen, Ewan, Gavin, Greta, Jamar, Joshua, and Nathan.  All of these awesomely precious kiddos are fighting their CHD (or complications from various procedures).  Ewan and Joshua are truly in the fight for their lives.  Please pray God's peace and healing over them as well as His comfort for their families.

Thanks for reading.