Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.
My husband and I can't help but wonder if we're doing the right thing. Given the normal course and degenerative nature of Sanfilippo Syndrome, now is Eliza's best time to actually be able to do things out in the world. With our decision to not go out, we are taking those experiences away.