I've become an avid reader of a blog found through a friend of a friend of a friend of a family member's friend......you get the picture. Anyway, the blog is written by a mother dedicated to journaling about her child's rare genetic disorder called CHARGE syndrome. The mom had a totally normal pregnancy, and had no idea her son had this syndrome until she met him face to face for the first time. This syndrome is a BIG deal and this poor sweet little boy has had a very difficult first seven months of life. Today his parents met with his care team(yes I said TEAM because it takes 20 plus specialists to keep him alive) and found out that they had the most heart breaking decision to make.....whether or not to continue doing the "above and beyond" measures to keep their baby alive.
WOW.
I am tearful as I write this because I am feeling pretty humbled by their reality right now. Pretty much puts my previously mentioned life-changing decision into perspective. My reality feels pretty insignificant compared to theirs.
I'm thinking we all need to send a mental hug to our loved ones RIGHT NOW.
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