One of the things I love about being a mom of a child with a rare disease is that I’ve gotten to meet some incredible people – all over the world – whom I otherwise would never know in a lifetime!  Two of these amazing women are fellow Apert moms Beth and Tania.  Beth lives in Missouri with her husband and toddler, and Tania lives in Israel with her son, Miles.  Beth’s daughter, Phoenix, was born with Apert Syndrome and unexpectedly died when she was only 18 months old.  Tania’s son, Miles, has had numerous complications – medical and developmental – related to Apert Syndrome.

Tania moderated the webinar, in which we frankly spilled the truth about what grief is like when you care for a child with a rare disease.  The taboo in our culture rests in that people assume that grief is limited to death when we know otherwise.  Beth, of course, had an exceptionally unique take on grief, because not only was she a parent of a child with a genetic condition, but she also lost that child prematurely to death.

You’ll find our conversation to be honest, raw, and sincere.  We begin by differentiating between grief and depression, which I also feature at length in my upcoming book, From Grief to Grace, which is scheduled for publication in early 2016.