Telling Shane's Story on the Annivesary of His Death

17 years ago you earned your wings, Shane.   It's been at least 10 years since I sat down and told your whole story.   I don't know why.  Maybe because it's my job to represent 6000 children born with CDH.  Maybe because it drives me nuts to see people work so hard to elevate one patient's name when so many others are sick and dying too.   Maybe because I was raising you to be kind and humble and I never wanted the charity to be about you.  Or maybe it was simply because it's painful to share so much and I just wanted to keep you to myself.

But more than half of the families at CHERUBS have never heard your story.  Many of the new generation don't see me as a grieving CDH mom too.   Your name and photo is rarely included on awareness projects when they list all their CDH friends' children.  I'm just here to provide a service, run the charity, give free stuff.... to some.  Not everyone thinks that way.   Some remember.  But this problem has gotten worse the past 2 years.  This generation is not like the one that was here when we started, when everyone just wanted to help everyone and no put their child first and there was no social media or cliques or drama.  The cause came first.  Saving babies came first.

So many have asked about you lately though... and I admit, the mom side, the human side of me... it hurts when you are forgotten.  Above all, I am your mommy.   You matter too.   You lived.  You fought CDH.  Your memory lives on.

So on your angelversary, I decided to do a live Facebook video and share your story.  I had no intention of crying, but then I wear my heart on my sleeve.  It is raw, it is true, is our story.  


I love you and miss you my son, forever.