CHD is Endured

A lot has happened since my last update. Most tragically a sweet little heart warrior named Skylar passed. She was born a couple days prior to Avelyn and was a true beauty. While we haven't really grown close to any of the other families here at Vanderbilt, we saw Skylar's sweet parents often in passing and traded updates about our girls. Skylar's passing has had me thinking a lot of how these kids battle each day for life and how they are often described as losing their fight when they don't make it. 

I think this sends the wrong message. Little Skylar and all the other kids who have passed with CHD have not lost their fights. To suggest such belittles what these kids have been through. CHD is not something to be beaten or won. It is a battle that must be endured. Some kids are born with more complex defects than others and must endure more if they are to stay with us. Sometimes it's just too must to ask a little body to endure. To suggest these kids lost their battle suggests there was something they could've done differently or that they could've fought harder. If I make anything clear I hope it's this, these babies can't fight any harder than they already are. They're the purest among us, no alternative motives exist for these sweet babies. For each and every one of them the fight for life is all they know. Each needs to be remembered and respected for such. Even survivors will forever live with the effects of CHD. There's no cure and surgeries don't completely "fix" defects.

Each child who passes from CHD is a true loss, to their families, communities, and society. The future they would've had is a true loss. The lack of research for CHD is a true loss. How can these kids lose a fight that cannot be beaten. No, each is a little wonder all hit/her own. They just had the misfortune to be born in painful circumstance. 

I stole the photo below from Skylar's sweet momma.  While it doesn't reflect our children's struggle with CHD if definitely reflects ours.