I have had the wonderful pleasure of getting to know some other moms who have children with Sanfilippo. We can only talk online, but it has proven to be such a beneficial support system for me. I feel understood. Even though each child's progression in the disease is different, we all know that terrible pain of the diagnosis, the feelings of grief, and the unbearable sadness of watching your child be afflicted by such an awful disease.
Tonight we started getting out the Christmas decorations. We have the tree up, with the lights on. That is as far as I could get. The holidays are going to be tough this year. I can already feel the emotions welling up inside of me.