final transmission.....for a while

I've sat in front of this blank screen far too often over the last few days, I know that I promised an update but truthfully I can't do it. There simply isn't the energy. It seems that even the strong grow weary and the resilient falter and I significantly overestimated myself when I thought I could be a superhero (it's a very good thing that I didn't order the cape and tights).

Truthfully, this Batten Disease thing truly sucks and while most of the time I can stand, fist raised in defiance against the beast that is slowly stealing my daughter, there are many days when I feel completely lost in a sea of grief. The little girl I once knew is here, but she's not here and it's a reality that I am have a hard time accepting. I love my daughter with all of my soul but at the same time I miss what was. I miss the little girl with the chirpy voice and never ending energy. I miss the way she could destroy my pantry a minute flat and then move onto whatever caught her attention next. I miss the way she would make up little songs (usually about the dog and how we never fed him....untrue, I assure you) and serenade the entire playground as I pushed her on the swings.

I miss.

Seize the day! Live in the moment! Both are romantic notions but not truly realistic in the long term. At the moment, we are stuck in some sort of sick limbo. Remembering hurts. And while I smile through the tears and try to cherish the memories, the pain doesn't ease. Looking to the future hurts. I am well aware of the progression of the disease and have witnessed first hand its insidious workings. The thought of where Tatyanna could be one year from now leaves me cold to the very core. All we really have is today and for today we will go on fighting. Fighting to keep the child that we love. Fighting to make the best of a life that we never imagined or would wish on our worst enemy.

While I will go on writing, and will probably even do the back entries as promised, for the moment there will be nothing posted on this site. One of the biggest areas that I am struggling with is that of support. Over the past year I have become increasingly angry. Angry with friends that I thought would be there, angry at family that I thought should care more. Things like facebook and blogger have made it too easy to become a voyeur into someone's life and have erased the need to pick up a phone or send a note. Why call....she seems fine on facebook. Why ask how they're doing....she wrote about it last week. Friends that I had hoped would be supportive have all but disappeared and conversations have been awkward and are carefully kept to "safe" subjects. Don't ask, don't tell seems to be the general consensus and at the end of the day, it has left us feeling very much alone. I had hoped for better, was let down and now need to learn to get over it.

And so, for now I will be going underground with the hope that in the near future I will be in a better place. Until then.....

*Still not out of the hole, but it's no longer quite so dark down here....back and fore posts are done as promised.*