I haven’t gone on a blind run in three weeks, but I keep logging miles for Taylor. If you follow my blog, you know my ankles are trashed. And if you read this post from a couple of weeks ago, you’ll remember that I re-injured one of them trimming my roses. Yeah, trimming roses – not playing soccer or kicking butt in a race. That injury made me wonder, for the first time, whether or not I’d really make it to Nov. 16, the date of the Thunder Road Half Marathon, healthy enough to run 13.1 miles with a blindfold over my eyes.
I had a tough time limping up my mountainous driveway after the latest gardening injury, so logic would say I’d take a couple of weeks off from weight-bearing activity. But instead, I hopped on a plane bound for the Jackson Hole airport at 7:00 the very next morning. After a hasty connection in Salt Lake City and, with deepest apologies to my home state of North Carolina, the best pulled pork sandwich I’ve ever had in downtown Jackson, my husband and I set foot on our first trailhead in Grand Teton National Park by 2:15 p.m. MST. I laced up my ankle braces and my top-of-the-line boots, said a prayer to God, dug my poles into the Wyoming dirt and hiked my first 3.2 miles to and from sparkling Taggart Lake.
That night, I set up the two chairs on the porch of our cabin so they faced each other. I went to the laundry cabin for four large bags of ice, came back, plopped down in one of the chairs, put my ugly feet in the other, wrapped my ruined ankles in the bags of ice and stuck my nose in a book for 20 minutes to avoid the funny looks I imagined the resort’s other guests might be throwing my way.
The next day, I didn’t have any swelling, which in my twisted mind means that I’m fine, whether or not I have any pain (I did). So I told John a white lie and picked a trail that would take us past a couple of popular picture-taking spots near the gorgeous Jenny Lake, then beyond the crowds and deep into Cascade Canyon, all the way to Lake Solitude, for a 19-mile roundtrip hike.
The view at Inspiration Point, perched at 7,200 feet over the sapphire waters of Jenny Lake, is enough for most people, and they turn around. When we took a break there for a drink of water and a couple of SHOT Bloks, I could see why.
Though I have the heart and lungs of a marathon runner, I have the ankles of a kid who played every minute of too many double-overtime soccer games when she should have been on injured reserve. My latest injuries – those of the blindfolded running and gardening variety – slowed me down, and as the Wyoming daylight faded, we realized we wouldn’t make it to our lake of solitude. So we turned around early, making our 19-mile hike a 13.1-mile hike. When we reached the car later, I told myself that Taylor would be proud of the miles we’d logged. And even though we didn’t achieve our goal, those miles were good enough for me.
We hiked our Jackson Hole half marathon for Taylor on just our second day out of nine full days in Wyoming. In fact, our “half marathon” didn’t even represent our toughest hike; that would be our journey to a point high above Amphitheater Lake in the Lupine Meadows area of Jackson Hole – a shorter hike at about 10.6 miles, but with an approximate 3,350-foot elevation gain over 5.3 miles to 10,000 feet above sea level.
In total, we hiked 60 miles. I dedicated all 60 to my sister. Some of the miles were easy. Some of them were hard. Because of my ankles, some of them were tougher than they had to be. But the rewards, from the wildlife we encountered to the sweeping views we enjoyed to the cleansing effect the mountains had on my soul, made every tough mile worth the effort.
That’s how I hope our fight against Batten disease will be, in the end. Some days it is. Some days we get amazing news or score an incredible (small) victory or witness something powerful in my sister that, like a gorgeous view or a long, invigorating drink of fresh, clean water, gives me strength for the next set of switchbacks up the mountain. Some days Batten disease knocks us down and kicks dirt in our face and rubs rocks in our wounds. There are more of those days. But the good days are so much more powerful that they overcome the bad, even though they’re outnumbered.
I called my parents one night while I was icing my ankles on the porch of our cabin in Jackson. Mom put Taylor on the phone, and I told her about the big bull moose John and I saw in the woods. I told her about his chocolate skin and his huge rack of antlers and how lazy he was, just sitting there chewing on grass in the trees while people took pictures of him. Mom told me that was the first time Taylor laughed all day.
I had so much fun describing that moose to my sister. But I wish she could join me on the trails so I could REALLY share my love of hiking with her. I loved coming up with ways to tell her about the moose, but I wish Taylor could experience things like that for herself.
While I took another trip of a lifetime, Taylor sat at home, waiting for her big sister to call and tell her about sights and sounds and experiences that she can only dream about.
That’s why I hate Batten disease.
That’s why I’ll never stop fighting.