Sunday, March 02, 2008

Until this moment, I really did have hope. Hope that maybe the hours of research would be more than fruitless distraction. Hope that perhaps one of the treatments offered in China would be able to slow the progression of this horrible disease. Hope that perhaps something miraculous just might occur. Now, I am wondering if it was just part of the naive, blind grasping that all mothers go through when faced with their child's mortality. While I do believe in the power of prayer and positive thinking, I can't change the fact that I am a realist. No child has ever escaped the outcome that follows a diagnosis of Batten Disease. To be honest, it's not the final outcome that bothers me. It's the fact that the disease works it's damage steadily, robbing the child of their ability to see, to move, to communicate. A once vibrant and active little person is left as nothing more than a twisted shadow of their former self. Dreams are cruelly shattered and hope gradually fades. It's a fate I would not wish on the worst of my enemies -not that I really have alot of those lurking around- and now I must sit here and watch my baby go through this.

While going to China to pursue the elusive chance that the progression of her disease may be slowed seems like a long shot chance, at the moment, it's all we have. I'm aware that this centre may be doing nothing more than cashing in on the desperation of people faced with insurmountable odds but how do I not try? Someday, I would like for things to be simple. To wake up in the morning and feel truly glad to be alive. To feel hope, and promise and optimism. But to be honest, I have no memory of such things. Things have been so hard for so long now that I it's like reading about them in a book and I have forgotten what living them really feels like.

It's funny though, when Tatyanna is awake and life is going on around me, it's not hard to feel positive. At the moment, she's so happy, affectionate and full of life that it rubs off on you and leaves you feeling good. It's only here in the darkness when the house is quiet and everyone is sleeping that the weight of it all starts pressing in around me.

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