Harlee: One in a million...

I was wondering what was taking so long...

She was one that we thought was in the win column for our studio. She had been in last year for her best friend's session and made it clear she'd be back the next year.

Next year was here... and month after month passed... and there was no Harlee to be found.

And then, finally, the call came from Mama Nancy.

Turns out that she was hoping things were going to get better, and when they didn't, they could wait no longer.

For those of you who don't know, Miss Harlee has a rare form of muscular dystrophy. Forced to a wheelchair most of the time, sweet little Harlee's muscles and joints are robbed of their strength by something called Ullrich Congenital Muscular Dystrophy or UCMD.

The disease hasn't taken her smile, her ornery sense of humor or her fighting spirit, however. I've seen it for several years now at Homecoming and Prom at East Marshall. She is such a sweetheart... one can't help but want to try to give her a hand or assist her in some way... but she's a fighter... independent... and doesn't want the help, much less any of your pity.

So, at the dances, she'll usually roll in... get as close as she can to the spot on the backdrop... and then find the strength to balance on her legs for just long enough to be there with her buddies. And while I know she's struggling and most likely in a lot of pain trying to maintain something that most of us take for granted... there it is anyway.... that perfect smile.

Evidently what strength she did have has been waning and she was really hoping to be able to get around better for her senior session. That's where the delay came in. I had begun to think she had went another direction. Truth is, she was holding out hope.

When pushed to the limit with winter being at our doorstep, Harlee could wait no longer for her senior session and we, with the assistance of Nancy and Papa Mark, we did what she's been doing her whole life... making the best of it.

I trust that Miss Drury slept well that night as I pushed her to her limits several times. Her limitations physically weren't gonna stop us from showing her spirit... and I was honored that she trusted me to do that for her.

I learned that she's perhaps the world's most insane power-shopper (without having to weigh down her arms with bags that she can hang on the back of her chair, she's even MORE lethal than the average girl!). I also found out that she's a HUGE Iowa Barnstormers fan. A regular fixture at Wells Fargo for home games, she and all the Drury family were teaching ME about something I normally have a leg up on in a conversation. She knows the Arena Football players by name and much of their history.

At this time of year, we all pause and think of things that we are (or should be) thankful for. And when I was studying up on UCMD for this little story about Harlee I learned that her condition strikes just one in one million persons globally. She may not have the luxury that most of us do with our bodies, but I know this... I'm glad this one-in-a-million young lady is a part of our community... and we can all learn from you, Miss Harlee.

Thanks for your trust in me... and keep on fighting... you're an inspiration to all of us.