Today Trent and I got the bad news we have been waiting for. Tatyannday a was diagnosed as having progressive myoclonic epilepsy also known as Batten's syndrome or Batten Disease (late infantile onset). Our suspicions were confirmed once we arrived at the hospital to find that the neurologist had booked a conference room and was coming in on her off. Things grew more ominous when we were informed that a nurse and social worker/support staff would also be present. While I really wished that I would have better news to share and that the ordeal of the past few weeks could be filed somewhere next to "cancer scare 2007" (yeah i know, I never did tell you about that one) I knew deep down that it wasn't meant to be. I wish somehow that made things easier. At this point I'm numb. I could feel my psyche slide into survival mode as the information was divulged. While I've held my sobbing husband and felt my whole world come crashing down, I have yet to shed a single tear. I know that won't come until later. When all the house is quiet and everyone is asleep. In some ways I hate that I'm like this. Things would be so much easier if I could just let my guard down and allow someone to console me when things get tough but at the same time there's a well-trained part of me that's not willing to let that control go.
Tatyanna my sweet girl you have endured far more than any child should ever have to with more courage than most adults. My heart is breaking and my soul aches. I truly wish that I could make this all go away.