CHD vent

I had a post I was in the process of writing for congenital heart defect awareness week.  It was pretty technical with stats and info on CHD's, HLHS in particular.  I've gotten so used to being a part of this world that sometimes I feel like I've become numb to it all.  I don't cry every week anymore.  The feeding tube is normal.  I don't even remember what it's like having a baby without one.  The sound of our Vader machine (aka the oxygen) is soothing now.  So I was completely prepared to spew forth a whole bunch of information about 1 in 100 and underfunded research etc.  Then about half way through CHD week I was forced into a reality check and that post I was preparing seemed pointless and not enough so I never finished.  I just had it all wrong.
Since most of my readers are fellow heart mom's or facebook friends you know that one week ago today our heart friend Kylie received her angel wings.  I've been apart of the heart world long enough that I've known of multiple lost battles and all have caused tears but none have hit so close.
This past summer was hard.  That's a major understatement.  This past summer was hell.  I haven't done the math to see how much of it was spent in the hospital.  I don't really want to know.  I don't want to know how long I was away from Ella and Andrew.  I don't want to know how much time with Liv Andrew and Ella missed out on.  I spent most of the summer coming to the realization that Olivia's heart defect was bad.  Really bad.  I of course knew it was but after her amazing recovery from the norwood and amazing growth I had gotten it in my head that this wasn't going to be so hard.  Silly of me, I know.
During our third hospital stay (the one with the heart cath) I met a heart mom, Chrissie.  I was having a hard time putting myself out there and actually meeting my facebook buddies in person but Chrissie actually came to our room and introduced herself.  They were inpatient by that point.  We became friends quickly.  I don't remember when we had our first brownie run but once our girls were tucked in we'd sneak down to the cafeteria and get a snack and just talk.  The first time we stayed up until between 3 and 4 am.  Every hospital stay for us, Chrissie was still there for brownie runs or chatting in the hall during brief breaks during the day.  Every so often Chrissie would bring Kylie by to see Olivia or I'd go visit them during Liv's naps occasionally.  Chrissie got me through last summer/fall.  She was the only one I could talk to honestly.  I didn't have to lie to her and say everything was fine and we were all good.  She knew and understood exactly what I was going through.  So when I got a text on Tuesday morning asking if I'd checked facebook I kept thinking, "Please let it be a new heart."  I knew it was going to be Kylie.  I was so hoping for the best for our new BFF's.
This week has been hard for me.  Not only mourning the loss of Kylie and wanting to take some of the pain from Chrissie but not knowing our own future.  CHD's are horrible.  You can talk about all the stats you want but those are just numbers and information.  Those numbers are just a reflection of all the lives CHD's take and of all the families affected.  I prefer putting faces to CHD's.  I'd rather share the stories, both the angel and surviving.  I want to share Kylie's and Livie's stories.  I want CHD awareness to be about more than the numbers and information I was going to share.  Not saying we should forget the stats either.  I think the heart mom's I know have it right.  Sharing the pictures of their warriors with the stats.  And so, here is my revised version of the stats.
1 in 100 children is born with a CHD.
There is no known cause in most cases.
1% of CHD's is HLHS
My child is 1 in 100.