Retrospective Lily

(Taken from the chapter on “Creativity” in my first book, a work in progress)

My parents recently found a few home videos taken during my childhood. Since they were taped from the 1990’s-2000’s (before everyone age 7 to 87 had a cell phone), we needed a VHS player to watch them. I feel privileged to have a window back in time to those pure, sweet, heartwarming moments. Seeing my memories unfold on video made them so much more vivid and real vs. looking at still photos. It was pretty trippy, honestly. These scenes that had lived only in my mind from a first-person perspective, or that I had forgotten about completely, were now available to watch from an outside POV.

Some of the videos included my Kindergarten end-of-year play, a dance recital, a Girl Scout ceremony, family members singing at a reunion, opening Christmas presents with my little brother and cousins, and a play at church performed by the youth group. But my favorite one features me dancing to classical music at home, really hamming it up for the camera, as my brother nonchalantly uses a pair of child-safe scissors to cut up an afghan blanket in the background. (It is laugh-out-loud funny when my dad finally notices after five minutes and orders, “hey, quit that!”)

Looking at me today, you may not think so, but I was actually running around like any other kid in those videos. No one suspected that little girl would grow up to have a disability. Friedreich’s Ataxia wasn’t a factor in my life yet. Everything was more simple; I was still innocent. I love having the intelligence, maturity, and confidence of an adult, but I miss that simplicity sometimes. Then again, don’t we all wish we could be a kid again for a day? Well, only if you were lucky enough to have a good childhood. My luck in life has varied dramatically. In some ways, I won the lottery, but genetically, I won the anti-lottery. (FA affects an estimated 15,000 people globally.)

You could call me a RARE girlie. ♥

The coolest video for me – the one that kinda blew my mind when I saw it – was taken on my birthday: August 19, 1993. My grandma walked around with the camera that day, filming the immediate afterbirth experience. She got my mom laying in the hospital bed, disheveled but beautiful with red, curly hair, holding baby Lily for the first time. (I’m still a little irked that she didn’t pass her hair genes down to me.) Grandma also got my dad, whose mustache was darker and thicker back then, cradling his newborn daughter in his arms.

It was wild to see the day I was created. Okay, I know that technically happened nine months beforehand in my mother’s womb, but that’s the day the story of LILY began. The little baby in that video is ME – the girl who writes, the girl who loves, the girl who’s made mistakes, the girl who has a rare disease. Everything I would ever grow up to think, do, and be was contained in that tiny body with a tiny brain, a tiny heart, and some uniquely-coded DNA strands. So much potential!

God is pretty creative, huh?