I just checked in on the kids before I turned in for the night. I lingered a bit longer tonight. Their futures are weighing heavily on me at the moment. It is easy to *forget*. To rush through the day and forget the fact they my children are slowly dying. I suppose in order to cope, we have to compartmentalize. In order to survive, we have to take it one day at a time. And then like a wave rushing over me, I remember. Their sweet little bodies are slowly failing them. Their brains are slowly being destroyed, causing them to forget and bring about confusion.
So often my sadness comes from a place of how this all effects me. How am I going to deal with losing them. How am I going to survive their deaths. All valid concerns. But I forget about the havoc Sanfilippo is having on them.
Tonight as I watched them sleep - Oliver on his belly with his legs tucked under and his bum in the air, Waverly on her back clutching her Cinderella doll - I was overwhelmed thinking about how Sanfilippo has effected them. The frustration of not being able to do something they once could. Not being able to find the word Wavey so desperately wanted to say. Stiff joints. Tripping and falling for no apparent reason. No best friends for sleep overs. No notes passed during class. No t-ball or soccer games. No dance recitals or school plays.
My sweet babies.
I want so much more for them.