We had a nice Christmas with T. After doing Christmas Eve dinner at our house for our still-young combined family, John and I spent the night at Mom and Dad's per T's special request. Anyway, I wouldn't have missed another Christmas morning for the world. In our family, one of the kids--T in recent years--always gets up at the crack of dawn to roust everyone else out of bed and go through Dad's various warning signs and booby traps before finally making it to the horde of gifts by the tree. The night before, T wrote a note to Santa and his reindeer that enumerated the gourmet snacks (chocolate milk, candy cane sugar cookies and carrots for Rudolph) and Scotch-taped it to the hearth. Around 11:00, she stood by the window in the den waiting for Santa's sleigh to pass by in the night sky, then suddenly grabbed my arm and exclaimed, "Look, Sissy! I just saw Rudolph!" It was a heartfelt claim, not a joke. T can see next to nothing right in front of her nose, much less a sleigh and a team of reindeer streaking across the sky, but the power of a child's dreams, illustrated by her still-strong belief in Santa Claus, is perhaps more important than anything "seen" by your eyes or mine.

If you really think about it, at the very basal level, how much difference is there between believing in things like Santa Claus and the Easter Bunny and believing in miracles like the one it may take to save T's life? We can't prove or disprove the existence of or see Heaven or God, and yet our belief in such makes life on this earth as we know it infinitely happier and more fulfilling than it would be if we believed in nothing at all.

We went to SouthPark Mall yesterday afternoon to return a few things and scavenge for leftovers on the sale racks. They've had several luxury cars on display there for awhile, and when we left Belk, we walked right past a shiny new, silver Hummer. As we left it behind us, T squeezed my hand and said, "Whoa! Did you see that car?!" I instantly wondered how she could have possibly seen it--more often than not these days we have reason to believe that Taylor's sight has left her except for perhaps a faint recognition of darkness vs. light. I took it for what it was, though. Somehow, someway, T knew we'd just walked past a car, even though it was the same color as the polished floor tiles and much of the interior landscape. Who knows, really, except for T? I'm not going to question something so beautiful. What's more, I'm starting to think that maybe she did see Santa and his reindeer after all.

There's a great, easy way for you to raise money for Batten Disease research every time you search for something on the Internet. I've always used Google, but I just learned that you can generate funds for your favorite charity every time you use www.GoodSearch.com. The Batten Disease Support and Research Association (BDSRA) is an approved charity--just type "BDSRA" into the "Who Do You GoodSearch For?" box, and then search away! 

I'd truly appreciate it if everyone could share this great tool with friends and family. Let me know if you have any questions!  

If I'm stuck in a burning building, and a single window is my only chance to escape, I'm jumping, no matter how long or how hard I expect to fall. If I'm on a raft and come to a fork in the river, where one path ends abrubtly in a rushing waterfall at the bottom of which are the angry jaws of sharp rocks, and the other takes a sharp turn out of sight, I'm taking the latter.

I've questioned my faith more than once since we got the crushing news of Taylor's illness, but I've never lost it. You can't use words like "hope" and "believe" if you've lost your faith, and I've always been 100% open and honest about my hope for and very real belief in our ability to save Taylor. Even on my worst days. Faith is about believing in a higher power and in the existence of miracles, but it's also about having the confidence to jump out of the window or paddle down the fork in the river that bends out of sight. So, if Batten Disease is our burning building, and God blesses us with a window, we have to take one another's hand in ours and jump. If we're lucky, the fall will be soft. If we grow wings, the search for our miracle will be complete.

There's a yellow brick road for children with Batten Disease, but the beginning is hard to find. If you're lucky enough to find it, as I believe we just have, then your dream of a glittering Emerald City survives another day. We're not there yet, but we have a little girl who I believe is brave enough to lead us there and angels all around us whose wings will carry us when we cannot walk.

Our lives are forever changed. I wish that I could relive even a single day from our world before Batten.

A year ago today, we were arriving in Orlando, Florida for Taylor's first, much-anticipated trip to Disney World. We rushed to take her just months after the diagnosis. We wondered--even though we didn't speak of it often--if the day would come that such a trip could no longer be fulfilling for her. And at least then, she could see flashes of the fantasy world in which we spent two chaotic, wonderful days.

Now, instead of losing sleep in anticipation of a happy day with T, whether it be Christmas morning or a trip to Disney World, I'm losing sleep over the moment a week or so from now when a phone will ring somewhere in my parents' house, and my mom or dad will pick up, and on the other end of the line, someone will either offer Taylor a possible chance at life or will resign us to waiting for another answer to be found in a lab somewhere as we watch our little girl slip away from us.  I remember days when I waited by the phone for boys to call or companies to offer jobs or internships. I strongly preferred waiting for those calls.

When I was in middle school, I read a book about two kids who found a magical VCR they could use to rewind time. It worked to their advantage when, for example, they reached for a glass of milk too quickly and spilled it across the table. On the second go, they just reached more carefully, and the glass was left intact. The VCR got them into trouble later on, though. They found that more significant events, like car accidents and untimely deaths, were best left alone. These ill-fated attempts to rework history always backfired on them. After all, how much power do we, as human beings, really have over the world and what happens in it? Or perhaps the more important question is, how much power should we hold over it?

No magical VCR--or DVD player these days, I suppose--can fix this. The only good that could come of it would be, once again, a chance to relive those fleeting days that were so happy, before we knew any of this was going to happen. I wouldn't even try to change anything on my rewind trips, unless I could figure out to how make those days last longer. Nothing I could do would matter, anyhow. There's nothing we could have done before T's diagnosis to prevent it from happening, but there's everything to do now that we know. And while actually experiencing the days again would be nice, I just dream about them now.

In literature, the question of free will vs. fate is pondered fairly often. How many times did I mull over that very topic for an English paper at 3 a.m.? Generally my answer depended on the character or the author, or else my mood at that time of the morning. I could always make my explanation sound good, in any case. But this is non-fiction--my non-fiction--and who knows the true answer now? No one does, really. I don't know that any of us do until after we're gone from this world of Batten Disease and deadlines and too-late nights and are left free to watch it through eyes that are no longer fettered to an anticipation of joy or despair over the result.

Every moment of every day, I wonder about how much of an impact we're having. I want to hear that all of this can be over, that by some stroke of magic we can walk away from all of this and start anew. All of this we're doing--and surely, all that you're doing, by reading this blog, by sharing Taylor's story, by making a contribution to research or showing compassion or just being a friend--certainly makes a difference. As human beings, I don't know that we have the final call on whether or not these children make it, but I'm not about to leave it all to fate. I may not have total control, but I can at least push it along in the desired direction. That's all we can do, and it makes our lot far better than the one that fate drew for us.

Sometimes I'll see something beautiful, like a breeze whispering through fall leaves still clinging to trees or bare limbs against a winter sunset, and realize all over again how equally significant and insignificant we are in all of it. I'll look for answers in the leaves or in the dying light that glows behind the black, featureless limbs like a solar eclipse.

There are four things I know to be true:

-children like Taylor deserve to be cured, to have a chance at life, to see fall colors and winter sunsets
-the answer is out there somewhere
-I can't find it alone
-we won't find it unless our eyes are open and our spirit strong

I wish I knew how to change the world.

As promised, you can now see the Touchdown for Taylor video online. Visit the Newsroom to link to a message from NFL Commissioner Roger Goodell and a slide show chronicling Taylor's life.

How long will we continue to wait to find out that all of this isn't really happening? Sometimes, the only difference between the nightmare and reality is darkness to daylight.

When T's original enzyme test indicated that she had something called "neuronal ceroid lipofuscinosis," I held out hope that it was a terrible mistake until the moment the DNA results--that horrible piece of paper from Mass General Hospital in Boston--sealed the deal.

I love to watch T dance and hear her laugh and sing. I love to hear her call me "Sissy" or my husband "Johnny." I love to take her hand and twirl her across the room when we pretend that we are dancing in a grand ballroom and she is the fairy princess. Those are the moments when I can almost forget that she has Batten Disease. The downside--because really, the "dream" now is our world before Batten--is that the aftershock is so bad. That's why I can go to my parents' house, make happy memories with my sister and then drive the three miles home in tears.

I know T is sick. I know she is sick because as I write this, she is far away from me, spending most of her week in a hospital and not in a fourth-grade classroom or out playing under the blue sky with her friends where she belongs, where she deserves to be.

The last time T spent the night at my house, she slept in my bed with me. She laid awake long past her bedtime, my pinky finger clasped in her hand as always. She appeared to be gazing at the ceiling, but I knew her sable eyes, beautiful even in near darkness, couldn't see the moonlight dancing on the still fan blades as I could. Often, T will seem to drift away, and I can never quite tell where she goes, but wherever it may be, she always comes back to me. She finally looked in my direction, clasped my finger more tightly and asked me a single question.

"Will I ever be able to see again?"

I'm having a blood draw done for carrier testing in the morning. I went over to Mom and Dad's today to get Taylor's DNA report so Mass General--the only lab in the country that tests for Batten Disease--will know what to look for in my genetic code. It's surprisingly painful to look at or even hold this sheet of paper. The phrase "Positive CLN1" is scribbled up at the top, and it's just mind-blowing to think that those two little words mean what they do. They sound so innocent. CLN1 is the defective gene in children with Infantile NCL, T's form of the disease. And positive doesn't mean positive in the sense of anything joyous or just.

It's even more fascinating--albeit in a sick way--as I continue to read. I'm no doctor, but I understand a lot of what it's saying thanks (I'm not thankful for the events that led me to learn about Batten Disease, but I suppose that's the appropriate word here) to nearly a year and a half of tireless efforts to get the science, if not the fairness, of it all. Otherwise, I'd look at it and wonder how it could possibly result in such a horrible disease. It reads like a summary from a auto shop, detailing mechanical problems that the mechanic can't fix. I had to learn over time why we haven't figured them out yet, though it seems that it would be so easy to recreate the missing enzyme in a lab and get it to the children who need it through injection, or even a pill.

The NCLs are inherited. They are autosomal recessive, meaning that both parents must carry the same defective gene in order for a child to be affected. There are many autosomal recessive traits that are desirable, or at least not nearly as nightmarish as Batten Disease. For example, blue eyes are determined by a recessive gene. I have blue eyes, though neither of my parents do. I'd say that compared to Taylor, I got the better deal, wouldn't you? Anyway, you would expect Batten Disease to have a hard time surviving, considering that 1) it's not easy to pass down and 2) those who are affected by it very rarely live to have their own children. But that's where it gets sneaky. You see, if my parents had never had Taylor, I wouldn't be going for a blood draw in the morning. Though we've found out the hard way that lightning can strike twice, I don't expect John to be a carrier, even if I am. But the fact is, it happens. It happened to my parents. There's a 50% shot that I've been walking around with this damned defect my whole life, and the same is true for my brother. T's taking one for the team, because without her, we'd never know that this even existed, much less in our family. Someone had to actually get it first. T's the whistle blower, the reason why all of us, both now and in future generations, will be tested for Batten Disease.

If natural selection decided to do us a favor, the NCLs would be phased out of the human race, just like a multitude of other life-threatening or otherwise horrible diseases that have no real purpose, that have no business being here. I'm not holding my breath, though. The odds didn't do us any favors when T inherited two bad copies of the CLN1 gene instead of the dominant good copies. If I hold my breath and wait for fate and chance to save T, it won't happen. If any of us do that, we'll lose her.