A birthday of sorts...

Happy Birthday, JRA.

It has been six years since your unwelcome arrival. Excuse me if I don’t pull out the confetti and the party hats. I’m not feeling very festive.

Oh… I know all too well that we’re one of the *lucky* ones. The ones who can use the R-word: Remission. One of the few *lucky* families.

I’ve seen what you do to the unlucky ones, and I certainly don’t want to anger you. I’ve seen the ugly tricks you keep in your bag: MAS, uveitis, jaw disfiguration, splints, and wheelchairs. Frankly, I’ve seen too much, and I’m tired of it all.

You see… as one of the *lucky* ones, I’m supposed to be the voice of Hope, and my bucket of Hope is empty. You have tipped it over one too many times, and I’m tired.

When the parents of a newly diagnosed child contact me and want to know that their daughter or son won’t be sentenced to a wheelchair the rest of their lives, I try to offer them Hope. I tell them about my 8-year old and how she races up and down the soccer field and scores goals. For those few moments, my bucket of Hope is full, too.

But I can’t tell them the rest of the story. I can’t tell them the aftermath – what it’s like to see your daughter turn from the field in mid-play, tears running down her cheeks as she grimaces in pain.

I can’t tell them what it’s like to walk that long row of soccer parents and pull the assistant coach to the side and insist to him, “Pull her.” Only to have him look at you blankly and say, “Do you see how tough she is? She just scored.”

I can’t tell them what it’s like to scoop your 8-year old up in your arms and feel her knee – feel the swelling that you bring and know you’re hard at work where no one sees.

I can’t tell them what it’s like to have a team of parents turn to you and ask, “What’s the matter?”

I appreciate their concerns, but I know what they’re thinking. There was no collision on the field. What’s happening, and why did she just pull her?

You see … you may try to break her little body, but my daughter won’t let you. On the soccer field, she IS a star. She is one with that ball – almost as if it’s an extension of her disfigured big toe. You know the toe – the one that’s a good half-inch shorter than the other because of all the inflammation. The one that won't grow.

Ever again.

You’ve tried to break her body, but she won’t stop. She doesn’t want to be pulled from a game. She wants to play through the pain and take the ball to the goal.

I can’t tell these families about the disfigured big toe or about the rest of the day – the day my daughter scored four goals.

I can’t tell them how her big sister carried her around piggy-back that afternoon, or how I caught my soccer star crawling from her bedroom to the bathroom to brush her teeth that night. The night after she scored four goals…

I can’t tell them these things. The ugly things… I can only tell them about the four goals my soccer star scored before I had to pull her.

I can only tell them how strong she is – much stronger than her mother.

How you don’t get to HER like you get to ME…

It’s time for you to go, JRA.