We spent last week at the beach. I took far fewer pictures than I usually do, but I promise to post a few here soon. It was my favorite kind of beach trip--one during which I was such a beach bum, I didn't even bother to get in the car and drive anywhere with the exception of the one night we took T to Barefoot Landing. I flopped on the sand each morning after breakfast and stayed out until dusk. T can't swim in the ocean, because she's been taking immunosuppressant drugs since the surgery in January, but we sat in the surf to look for shells and ran through the tidal pools at low tide. I love almost nothing more than hearing T laugh.

Because my family is who they are, we didn't finally pull into Barefoot Landing until after 9 pm on Thursday (T had been asking to go since we arrived in town on Monday night), so it was dark, and working through the crowd took some careful maneuvering. We went to a store called "Dress Your Pup" and bought bandannas and collar charms for Daisy and Sunny, and we walked through the line at the candy shop to grab handfuls of freshly made saltwater taffy. Sometime later, we were walking outside when T grabbed my arm (I'd been holding her hand all night) and said, "Look at the Christmas lights!" Stunned, I looked to my right, and sure enough, we were walking by the Christmas Mouse, the forever-holiday store whose exterior is strung with white Christmas lights.

I don't know how T saw those lights, or why, if we had gone the day prior, perhaps even in daylight, she may not have seen them (T's night vision went first, so we always assume that if she ever sees, she does so during the day). This disease is unpredictable and senseless in so many ways, but in this case, I'm going to try not to look past the simple fact that she did see those lights. It's a good feeling, so I'm bottling it up for later. It's just one more reason why I think my sister is amazing.

I ran under the stars tonight and wondered, could they see my tears, or are they blind, as she is?

Thursday will mark the second anniversary of Taylor's diagnosis. I feel that day as if it is happening all over again, even as I write this. But tonight is no different. I have the lead in every race, and yet somehow the ghost is always waiting for me in the driveway when I get home.

I started this record of our journey over 18 months ago; someday, I may run out of words to describe my pain. They were never and never will be adequate, but I am only human, as my pain reminds me daily. Does God hear my prayers? Does He know that the ghost appears every night, and that even when the sunlight greets me each morning, it follows me still? It haunts me always, even in those moments when I most believe. 

As I push on, my surgically repaired feet and ruined ankles and knees absorbing the impact of every stride, the adrenaline masks my physical pain, and the sky, stars and all, is mine to behold, and I believe once again that I can outrun the ghost. That someday, I may even run so fast as to beat him while carrying Taylor on my back.

So I will run forever.

The house I lived in until the summer I was 15 was on a lot meant for kids. The kind of lot you don't get with new construction anymore, at least not in Charlotte. From the brick patio, the backyard sloped down gently to a flat, grassy area where we had the swing set until Stephen and I grew out of it and then from there climbed upward for a long while, coming to an end in a pit full of dead leaves and old stumps from Hurricane Hugo of '89. My fear of snakes usually kept me from exploring too much back there.

About halfway up the hill was the tree house Dad and Papa Jerry built as a present for my 10th birthday--the same birthday T will celebrate next month. I used to spend hours up there writing stories on Dad's yellow legal pads or, if Stephen had been getting on my nerves that day, throwing rocks and sticks at him through the lattice walls as he stood, defiant, on the ground below. Out front the yard was a flat rectangle, perfect for pickup soccer or games of catch with Dad during the phase when I was convinced I was going to be a baseball pitcher. The only change in elevation in the front yard was around the side of the house by Mom's powder blue hydrangeas, where it sloped up to meet the driveway of the next-door neighbors. Stephen and I and the other kids on the cul-de-sac used to lie on our sides on the driveway and then roll down to the bottom of the hill. We'd do it over and over again until we were dizzy and our clothes were grass-stained. In the fall, Dad raked leaves into piles at the bottom of that hill, and we'd just roll right smack into them. It's funny now, looking back on the memory of that hill (and I've seen it recently, as our family moved to the next neighborhood over, and Mom and I still walk by the old house even today) and remembering how big it seemed at the time. In actuality, it's only got about a 20-degree incline, if that, and if you stretched it out taut, it'd only be about six or so feet long. But when I was nine years old, it was a mountain.

That's the funny thing about being a kid, though. Yes, the hill seemed bigger because I was smaller, but there was something else about it, too. Small things can seem huge when we're little, but ordinary things can also seem magical in the eyes of a child, and that's a principle that we as adults forget far too often. I remember the sound of T's laughter in my ears as we rode Thunder Mountain in Disney World at the end of 2006, when she still had some of her vision. Longer ago but still just as vivid, I remember the way her eyes and her smile danced as I pushed her in her stroller around the mall beneath our San Francisco hotel after-hours the summer she turned one.

When John and I were on the Outer Banks last month, far away from everything on our minds in geographic distance (but not safe from any of it or at all removed from it in our hearts), we went to Jockey's Ridge, the largest living sand dune on the East Coast (as pronounced on the front of the brochure). We spent about five hours there and for much of that time made a point of finding the tallest, steepest sandhills, standing at the crest, holding hands, closing our eyes and then running down as fast as we could, our bare feet sinking into the sand with every bound. I remember wishing we had T with us. After all, that was something she could have experienced. Because our eyes were closed, she would have seen it as we did, and because we would have clasped her hands in ours, also, she wouldn't have needed to worry about falling.

I am holding her hand always, and if I must close my eyes to understand more fully her plight so that I may try to save her from it, then I will. If I can give her even half of the life that I've had, then I must.

Have you ever been in a fistfight with a ghost?

I hate this invisible enemy.

For the children who stand to lose the most to the ghost, who get knocked down from time to time but because of their will are then able to turn around and achieve small miracles by riding a scooter or counting to nine, who want to be firemen and fashion designers and butterflies when they grow up--I'll keep throwing punches.

Someone--probably my always-optimistic husband, John--once told me that no matter how hard it rains, the sun always comes out eventually.

With the Charlotte area and, really, much of the country in a drought for a good long while, I have never wished for rain so badly; for a lazy Sunday afternoon spent lost in a good book on the couch in my great room; for the day I can walk across my yard without hearing a sound akin to the crunching of corn flakes beneath my feet.

Late this afternoon, as I closed up shop at the office, the sky blackened, and the first eager raindrops fell just as I slid into the front seat of my car. Before I went two miles, the water was rising in waves on either side of the Explorer. As the air filled with claps of thunder and hard, pelting rain, it seemed as though the storm would never end. But because John is usually right, I knew that it would.

And as I drove home from the gym just now, facing west on Gleneagles with the shadow of the morning sunrise at my back and the stubborn sunset before me, a streak of orange-red flame broke through the bluish-gray thunderclouds--the soft kind that lingers after a storm and dissipates without ever falling as rain--and brought the promise of another day.

The rain seems to have left us for the night, but I am still waiting for the end of another storm: the storm that began nearly two years ago, on the day that I received that awful call from my mom and heard the grim diagnosis in the case of my little sister.

There are some moments in this life that are fleeting in their duration, and yet we remember them forever--like where we shared a first kiss with someone we love(d), or where we were when the first news of something momentous broke, like the assassination of an American president, or man's first buoyant footsteps on the moon, or the horrors of 9/11. I remember the exact moment I learned what had happened in New York in every minute detail: precisely where I was standing on the UNC campus; what I was wearing that morning; the exact color of the sky, in fact such a brilliant blue I haven't seen anything that quite matches it to this day.

Receiving the news of Taylor's diagnosis, no less over a telephone wire and without the benefit of the outstretched arms of someone who felt just as devastated as me to run into for safety, is that way. I remember the crescendo of emotion as the meaning of four words--three of which are also referred to as "NCL" for short and the fourth of which is "fatal--" settled into every muscle and every tendon until my body, comprehending quite fully what the words meant but not at all understanding what to do with them--fell back into my chair. Imagine being tied to railroad tracks and seeing--and hearing--the locomotive in the distance coming straight for you, and yet being unable to escape. Those words didn't mean to do me bodily harm--that was the fate they held for my sister--but I felt that way just the same. As the idea of it all left Mom's lips, traveled over that telephone wire and reached my ears, which thereby translated it and sent it as an electrical charge through the rest of my body, in my mind I struggled to get away, but in reality my body remained frozen. And after the conversation had ended, only the word "fatal" was left to ring in my ears, like the relentless pounding of rain and hailstones that sometimes comes with a summer storm.

Know this, though: we are still waiting for our storm to subside, but we know that it can. Somewhere hidden beneath the roiling black clouds is our sunshine. We just have to find it before the sun sets on T.

Wow...is it really July?! I've been away for awhile, first at a wedding and then on an Outer Banks, N.C. adventure with John. Wi-Fi and cell phone service didn't follow me to Ocracoke Island, a remote outpost 30 miles offshore, and I was okay with that, but I keep telling myself I'll start posting several times a week, and time always seems to get away from me.

As for the wedding...well, I simply can't put into words what that experience meant to T and to our family. To our good friends Katie and Will and your families, you gave us a memory that will live on for all time. There are images from that day that I would like to bottle up and save for the days to come. T's "heel to toe" practice sessions and a trial run with Mom in the church before the rehearsal paid off, and she was a beautiful junior bridesmaid! And if someone could please pass the word along to Maddie, Katie's niece...thank you for holding my sister's hand! I had tears in my eyes when Taylor and Maddie entered the sanctuary together and then again when they were introduced at the reception. And as I expected, T took up residence on the dance floor. In fact, I had to convince her to wait until after Katie and Will had had their first dance. I took many pictures that day and promise to share some of them here soon.

What made T's part in the wedding particularly amazing, perhaps even more so than her blindness, is that she had major brain surgery just under six months ago. It's a fact I've never mentioned directly on this site, but when I hopped on to post tonight, it just felt like the right time. The surgery explains her short hair (so beautiful now that it's grown out a bit!) and hints that were dropped in most of my entries around the December-February timeframe. The highly experimental procedure was performed in Portland, Oregon, over 3,000 miles away. The road to Portland was our yellow brick road; we still haven't reached Oz, but finding the road--and staying on it for this long--is a gift in itself. Each day is a gift. Whether we will find the ultimate gift remains to be seen, but we'll never stop trying.

The day of the surgery is another forever image. It will live on in my mind and my heart for all time. It was our leap of faith, but more than that, it was T's, for after all, only T was on that stretcher when it was wheeled back to the OR, as the rest of us hung back in the waiting room to wait for six long hours. I still can't possibly know what the end result will be, but I do know this: six months ago, my sister slept in a pediatric intensive care unit in a hospital on the Pacific Coast. She spent three nights in that hospital and another month after that in her home away from home. For the past six months, she has made return visits to Portland so that the team there can learn from her. She has Batten Disease, and she is blind, and yet she goes to school, learns Braille, watches Hannah Montana, goes horseback riding, jumps off diving boards and rules wedding reception dance floors. Whether it is the treatment that gives her those gifts or her own courage, I just don't know. The treatment is the miracle that could be. Her courage is the miracle that is.