At various points throughout my childhood, I had my whole life planned out. When I was 6, for example, I intended to make a living selling Xeroxed copies of my handwritten, illustrated stories. I remember the day I sold my first story; my piano teacher bought it for a dollar. Needless to say, I had arrived. That same year, I declared myself a future astronaut. I knew the names of all of the planets, the location of the asteroid belt, the difference between a gas giant and a terrestrial and the fact that sometimes, Pluto is closer to the sun than Neptune. I was NASA-bound. In middle school, I decided I liked drawing fantasy worlds better than calculating parallax, so I set my sights on becoming an artist for Disney (after my professional soccer career ended, of course).
Crazy kids like me aren’t the only dreamers. I don’t have any children yet, but my mom told me that when parents choose a name for their children, they think of the future. When they chose mine (Laura Catherine), they envisioned it on a wedding invitation. When they chose my brother’s (Stephen Howerton), they thought about how it would look on his desk.
I know that my sister’s first (Anna) and middle (Taylor) names honor our great-grandmothers. But that’s all I know. When my mom shared the origins of my name and my brother’s with me just last night, my sister’s name was distinctly absent.
I used to envision big moments in Taylor’s future. Her graduation from college; her wedding day. But because Batten disease casts its dark shadow over the world in which we now live, we are forced to take things one day at a time. We wait for the occasional breaks in the clouds, and in those moments, we dance in the brightest, most beautiful sunlight. But the clouds always come back.
Shortly after Taylor was diagnosed, a well-meaning friend suggested I try to find the silver lining in my sister’s illness. More than five years later, I still insist that there is NO silver lining associated with this monster. To me, calling any part of our situation a silver lining implies that the possibility of losing my sister will somehow be worth it someday. But that’s not to say we’ve learned nothing from it.
Regardless of whether or not Batten disease ever butted into my world, I would have done well to learn this lesson long ago:
If we think too much about tomorrow, we may lose what’s best about today.*
*Thanks to my mom, Sharon, for providing the inspiration for this and so many of my posts. I love you!