Reading your posts, it's clear that you're all seeking something... advice, information, comradery, empathy, comonality.... Hope you've all found what you're looking for and gotten what you need as well. As a mom of a precious little guy who will likely be officially joining your kids in this challenging "club" shortly, I want to start with my most sincere appreciation to you all for how open and honest you all have been about your little ones, your lives and your feelings. For the moment, at least, the "why me"s, self hate and deep sense of isolation has passed.
Because someone else has said literally everything better than I ever could, in the grief for the loss of my "perfect" son, I reach for a way to heal and be the best mom I can be... through gratitude: "So, what do you get from loss? You get awareness of other people's loss, which allows you to connect with that other person, which allows you to love more deeply and to understand what it's like to be a human being, if it's true that all humans suffer." --- Stephen Colbert
Thank you. I am humbled by your struggles and inspired by your successes, the tiny ones and the life changing ones alike.