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.