Tuesday, January 31, 2012
Self-Management - Laurence Moon Bardet Biedl Syndrome
I wanted to share this video so that others can better understand Bardet-Biedl Syndrome.As I listened to this I just started to fall apart because all of the feelings and experiences are so familiar to me. Our world feels lonely, scary, and is very unknown. Some days it seeams as though BBS has taken away our dreams for our children's futures but, last night someone said, "They aren't missing out on anything!" Their world is beautiful and perfect! They are happy. We can't fix or change them. There is nothing to fix. We have to join them in their world. And, if we are patient and lucky enough we might just catch a glimpse of the vision of how God sees our special children.