People have been asking us how much Taylor knows, especially since this website was published. 

The truth is, Taylor knows very little.  She doesn't know that a group of women who care about her has formed a steering committee to combat Batten Disease. She doesn't know that for three months straight, I slept with the bear we made together at the Build-A-Bear workshop on July 24, 2006, the day she was diagnosed. She doesn't know that the bear makes me cry. She has no idea that this website exists or that people she has never even met are praying for her.

How much can an eight-year-old little girl possibly understand about Batten Disease? How can she possibly comprehend the fact that she has a life-threatening illness? One night recently, Mom was having trouble getting her to take her medicine. Finally, she said, "You're sick, sweetheart. You have to take your medicine." T's response was, "I'm not sick!" Well, in her mind, of course she's not sick!  Third graders think being sick means that you have a fever and a runny nose and have to stay home from school. T is not sick in that way. 

We have chosen not to tell T about Batten Disease for several reasons. First, while she is very intelligent and surely is aware that her issues extend past her vision, she wouldn't understand the words "neurodegenerative," or "lysosomal," or even "life-threatening." Why confuse her? We will not be dishonest with T, but at the same time, we must protect her. In her case, that means being highly selective when we decide which details we should share with her.

Someday soon, we will have to be more upfront with T. We must choose that time, however, and she must hear it from her family before she hears it from anyone else. Part of our mission is helping T make happy memories. How could we accomplish that if we told her something that would cause her immense pain, confusion and frustration? The other part of our mission is saving her life, but she doesn't have to know that. We cherish every new day with T and will not take one happy day away from her.

Thank you in advance for your understanding. All we can ask from our friends is that they show us love, support and sensitivity. We don't want you to ever have to stand in our shoes; we only hope that you can trust our judgment as we battle the most difficult thing any of us has ever faced.

T is now on bdsra.org's Faces of Batten section. As much as I wanted her included, it is very painful to see her there. When she was first diagnosed last July, the Faces page was the one that brought the most tears; six months later, it still is. 

http://www.bdsra.org/faces/facesusi-l.htm

T is my angel.

It was girls' night at Callie's. T, Mom, Callie and I made homemade pizza and chocolate cake.  Sunshine and Daisy came, too, so Mason was the man of the house. We celebrated T's half birthday, even though it's almost a month away.  We didn't have any birthday candles, so T blew out a tealight in the middle of the cake she decorated with lots of rainbow snowflakes, sprinkles and icing. We all said the cake looked like a Jackson Pollock painting. It tasted good, though! 

T is having lots of headaches--we think they may be from the medicine--but she still managed to have a great time. She danced and sang to her Disney CD before dinner. "Rock like a pop star, dream like a princess," she said.

T and Mom are heading to New York for a checkup with Dr. W next week. 

I had the day off today, so Mom and I went to eat lunch with T at Fletcher. As she ate her Chic-Fil-A nuggets and waffle fries, T told me about her morning at school. She got a special homework assignment from her math teacher; she was asked to collect several birthdays and make a birthday calendar (I was thrilled that she remembered mine and didn't have to ask!).  

T has insisted for awhile now that I stop by to see "Miss Forshaw," her art teacher at Fletcher, so I went by to see her after lunch. I took a private art class with Bess Forshaw in the back room of Bedford Falls the summer I was eleven, and T just thinks it's the coolest thing in the world that she has her now, too.

How ironic it is that a little girl who is nearly blind loves her art teacher most of all.  Sometimes, we don’t have to see the most beautiful things in the world to understand their beauty.

T had a great time at the Bobcats game last night--she and her mommy and daddy sat right near the floor!  She got a Bobcats basketball, teddy bear and baseball cap, and one of the cheerleaders gave her a Bobcats t-shirt! Her favorite player is Gerald Wallace, though I've tried to convince her it should be Raymond Felton. I did promise to get her a Gerald Wallace bobblehead doll if they have them.

T is scheduled for a checkup with her doctor in New York in a little more than a week.  We hope to hear that the disease has progressed slowly since she and her parents last made the trip in September. 

I want to thank everyone for the outpouring of support we've received after just one day on the web. If we're to achieve our goal, it will be thanks in large part to all of you. Even if you don't know Taylor personally, you're making a difference, and that means more to me than I could ever explain.

On this page, I'll share my thoughts, ideas, frustrations and moments of hope. As often as possible, I'll post updates on Taylor's condition and efforts to stop the disease that threatens to take her life.