Thank you to a friend who cried today when I could not. It helps me to cry, but the tears stay mostly bottled up, sometimes making it as far as the corners of my eyes but almost never down my cheeks.

My worst days aren't marked by sadness; they're dominated by anger. I'm always sad, no matter how hopeful I feel at any given moment. How could I not be sad? My nine-year-old sister is dying. And yet, how could I not be hopeful? If I had no hope, I would have no purpose here. The cure is out there somewhere. I still believe that.

On my worst days, I'm blinded by my anger at this disease and the way it has turned our lives upside down. I have had much to be angry at lately. Yesterday, I was angry.

Today, I was not angry. I woke up, and the sun was shining, and I knew that T would get up and go to school. I focused on that, and I was still sad, as I always am, but I was also hopeful; hopeful because I know that T will get up to go to school again tomorrow morning; hopeful because I believe in our ability to save her life.

In this world of ours, where good news is rare, it is only because of love that I survive. I have never known anyone stronger or more loving than my parents, except for perhaps my sister. I have never known better friends, and I have never been so moved by tears.

It's been too long since I last wrote. I want to dedicate this post to my great-grandmother, for whom Taylor was named. After months of declining health, she passed away peacefully yesterday afternoon in Raleigh at the age of 86. I was lucky to have known my great-grandmother and to have had her in my life for so long. Grandma Daughety, I will always remember you for your spunk, your eccentricities and your love for funny movies and "Co-Colas." We love you, and you will be missed.
 
Life is ironic. Just last week, I penned a short essay about the young adult novel on which I spent several years writing, the conclusion of which was postponed indefinitely the day T was diagnosed with Batten Disease. In the essay, I talked about the story, one of a girl whose mother is dying of brain cancer, as my way of dealing with death. Until yesterday, I had only lost one person truly close to me; my grandfather on my dad's side passed away when I was fourteen. His death and my Grandma Daughety's have taught me much about life. I realize now, more than ever before, that life is fleeting. We only get one shot at it, and regardless of your beliefs about what comes after death, we have to savor every moment we have on this earth. That's not all I've learned, however. As much as I've missed my grandfather over these past 11 years, and as much as I already miss my great-grandmother, they lived full lives. Sad or not, I can at least accept the loss of them as the natural way of life and can imagine them being in a better place than here. T, on the other hand, has not yet lived a full life. She has so much left to see and do, so much left to learn, so much love left to receive and to give. I won't accept losing T. Not like this.

Well, I have wimped out and made up my mind to run the half marathon this December instead of the full 26.2 miles. This decision came after a month-long internal conflict as I considered the impact on my joints, which are much too damaged already to be those of a mere 25-year-old (thank you, soccer), as well as the impact of all that time spent training on the time I have left over to spend with T. So finally, with early registration ending on 8/31, I logged onto the event's website very late last night and signed myself up for the half. I'll keep telling myself, too, that a half marathon is still pretty cool, especially considering that I have never run a competitive race in my life. I've just always had a ball at my feet.

I was reminded yesterday of the importance of T's happiness in all of this. Sometimes, I get caught up in the process of saving her and nearly forget that she's still here. I have to hold onto these days as tightly as I can and not take for granted the opportunity to take her out for ice cream, listen to music with her or take her to get her nails done. I need to find that place where I'm doing everything I can as a fundraiser and an advocate without losing sight of the fact that I'm her sister.  I'm still getting used to those roles, anyway. My mom--and our committee--are the real fundraisers. I'm doing what I can in the only ways I know how. I've been writing stories for over twenty years, so this blog has been an incredible outlet for me, and I hope that it has also helped others feel connected to our world as we struggle to make sense of it each day. This story--T's story--is more important than anything else I will ever write. I'm also thankful that I fell into marketing and public relations as a career right after finishing school. Those experiences have been very helpful and will continue to be.

All of those things help make me who I am, but perhaps most importantly, for the past nine years, I've also been able to call myself Taylor's sister. The images on these pages represent happy memories from those nine years. I want to make more of them while I still have the chance.