I was introduced to this blog the other day. It's written from the perspective of Avery, a baby with Spinal Muscular Atrophy, Type 1. This is a degenerative disease that is incurable and lethal, and type 1 is the worst. It's one of the more "common" primary diagnoses of CCMS, so I'm pretty familiar with it.
This family could be devastated and heartbroken, and I'm certain they have their moments. But instead of dwelling on their daughter's disease, they are choosing to focus on her life. They are trying to fill a lifetime into the short time she has and have created a bucket list. One by one, they are crossing things off of the list, taking lots of pictures, and having lots of fun making memories.
Read it, cry, and smile at the bravery of this family.