Tuesday, February 19, 2008

and it all comes crashing down....

There is really nothing that can prepare you to hear that your 4 year old daughter is never going to grow up. There will be no sleepovers with friends, no shopping for prom dresses or sharing motherly wisdom. There will be nothing but memories of a valiant little girl who fought so hard and lost so much.
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.

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1 comment:

spankysparks said...

I'm stunned. I've just come off a serious scare with my newest nephew, but by all accounts although it was touch and go there for a while, he will pull through. Why tell you that? It doesn't really compare. I guess maybe in the hope that you understand that I had for a breif period faced a similar outcome; though with far less attchment, and can in some way understand what you might be going through. That I can feel your pain, as if that somehow might lighten the weight of what you now must face. It's never easy to express your sadness in situations like this. I'm not putting to words what I feel or mean. I'm heartbroken for you guys. I wish so wholeheartedly that there was something I could say to change it, or make you feel better. But there's nothing, there never is. Know this though, that I am around, a mere phone call away if you guys need to talk. It's not much, but I offer whatever I can give. An ear to listen, a shoulder to cry on. I can't really think of what more to say. The words aren't coming. I'm sorry, so sorry. I will be in touch when I get home tomorrow.

Dan