Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.
I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.
This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.
WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?
My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words. Continue reading “Confessions As I Anticipate Grief: part 2”