Sweet 16th

When K. came in to our lives bright and early the morning of June 22nd back in 1999, one of the first feelings was simply thankfulness. But I wasn't just thankful for what most new parents are - health baby, 10 fingers, etc. Instead, I was thankful she was a girl so maybe... just maybe... I'd have someone who would go with me to do the things her dad didn't enjoy: horse shows, musicals, drum corps.

 

K. probably doesn't remember, but I tried to convince her to love drum corps when she was still a preschooler. I'd take her to watch evening ensemble run-throughs when she was 4 or 5 and the Madison Scouts were in town. They practiced at what was then the high school and evening run throughs were free.

K was much interested then. Something must have stuck though because Madison would be the corps she loved best the first year she actually began enjoying drum corps.

Although she wasn't interested at all when I tried to introduce her to drum corps back 12 years ago, something caught my eye at a souvenir stand as I came out of a stadium one night by myself after a local competition. It was a light-weight, kid-sized flag. I bought it.  K spent a bit of time being what she called a "flag runner" but then that flag spent a lot more time getting "planted" at the tops of "mountains" around here than it did getting spun or tossed to music. Poor ol' flag has had a hard life (see the photo above). 

But, maybe those trips to watch practice and that flag planted a seed that rooted and simply needed time to grow.

In elementary school, K had no interest in learning an instrument or taking lessons.  In 2010, she was NOT interested in joining middle school band.  Fortunately, many of her friends were all joining so she had a change of heart. As late as 2012 she didn't think she'd go on to join band in high school, because ... get this ... she didn't want to MARCH.

In December 2012, she attended a memorial for a beloved high school band director in another town. She heard touching stories from two strong decades of marching band history. She saw dozens of trophies put on display one last time before they were tossed in the dumpster. K couldn't believe that so many middle aged adults filled a gym just to reminisce about marching band.  I wouldn't fully understand until later that this one event actually made a difference in her thoughts about band and essentially changed her life.

We aren't spending the day with our daughter who turns 16 today. There is no over-the-top sweet 16th party like you see on TV. In fact, there's no party at all. There is no driver's license in her immediate future because she isn't even in town.  There's not likely even her own car any time soon. Why?  Her money (and some of ours, as well as some from generous friends and family, even) go somewhere else today.

Today, she is marching. K will spend seven & a half hours working with 84 other kids perfecting a show that only fits well on a football field. It's a show those kids will continue perfecting 'til the beginning of August. Tonight, she'll sleep once again on the concrete floor of the Armory in another town in another state.

Why?

Because ... at some point in time, the kid who didn't want to march fell in love with it enough to pursue it at the highest levels, despite her own physical limitations. Not only did she come to love playing her instrument, she realized she loved marching. And, then, she realized she could march AND perform at the same time by joining color guard.

Perhaps that sad flag served more of a purpose that I thought.  That sad flag still lives in our back entry way. We are not allowed to throw it away.

Who knew it was a portent of things to come? Although they aren't the same volunteers who will feed my kid today and stay with her at the Armory tonight, it was volunteers from the very same organization she marches with who made & sold that flag 12 years ago.

Turns out ...they knew what they were doing.

Who needs a birthday party when you can spend your birthday pursuing your dreams?

Marching Beyond the Pain

This is the face of chronic illness.

This is the body of constant, every-day pain.

This is what a hero looks like.

Imagine waking up every single day, knowing you’ll hurt today. Imagine staring up from the bottom of every single flight of stairs knowing there will be pain involved in climbing them. Imagine if every single thing you loved to do – especially those things you call your reason for existing - caused pain.

Imagine facing that as 15 years old.

I can’t.  But, then again, I’m lazy.  And, I’m a coward.

My daughter is neither of those. She has polyarticular juvenile idiopathic arthritis.  She’s 15. Did I mention she’s a hero?

She has JIA. But, it doesn’t define her.

Marching band is her passion. Standing at attention for long periods of time is debilitating. So, she has little patience for those with healthy bodies who complain about how tired they are from a week of marching.  March a mile in my daughter’s shoes, I think.

Color guard is her dream. Spinning and performing on the world-class level is her goal.  It’s lofty. I can’t imagine spending all day every day in the rigors of drum corps with a healthy body. She can’t imagine a world where she might never actually be able to pursue her dream because of her body’s limits, damn the pain.

Tossing a fixed wooden projectile high into the air only to have it come crashing back into your hands moments later hurts normal people. Tossing that rifle into the air and catching it hurts even more when you have the joints of an old person.

She loves it any way.

Being blessed with friends who joyfully embrace her humor has helped. Being called a liar and being bullied by a teacher who supposedly suffers a similar malady has not. Finding outstanding medical support has helped. Knowing you are constantly judged because you might LOOK healthy since you are too strong-willed to sit on the sidelines and opt instead to embrace your passion with arms wide open is challenging.

Still she soldiers on. When you are given a life sentence but have big dreams, really, what other choice do you have?

Luckily, this hero has her own heroes. We appreciate the folks who have helped make this journey bearable: the church groups that pray ... the fantastic pediatric rheumatologist and pediatric orthopedic surgeon ... the outstanding physical therapist who has helped make the summer marching dream seem possible again ... the color guard instructor who modified routines to make them do-able ... the friends and family who have supported her ... the people who get her sense of humor and her phenomenal passion.

Now that we’ve learned to navigate the JIA journey, she is taking the first steps of her drum corps journey.  She’s been given a contract to march with an open class drum corps out of Dubuque, IA.  Already, she’s been going to practice twice a month. Already, her knowledge, skill set and confidence have grown.  In just two short months, she’ll leave for the summer. She can’t wait to end the season on the biggest marching stage in the world ... Lucas Oil Stadium in Indy.

Getting there won’t be easy. Summer days will be filled with 8 hours of practice, followed by nights sleeping on a gym floor. When she’s not sleeping on a gym floor, she’ll be sleeping on a bus as the corps travels more than 5,000 miles to give more than 25 performances.

For sure, she’ll need a lot of support. If you see her ... ask her how you can help.  But, most of all, keep her in your thoughts an prayers.

This will be a tough summer, but she’s ready.  It won’t be easy.  And, there’s still a ways to go. But, she’s already proving that, with passion, determination and support, anything is possible.