Wednesday, July 18, 2018

Les Turner 5K 2018

Yesterday evening Eliza and I met up with other Gronk's Grace team members at the Les Turner Strike Out ALS 5k and 1 Mile Run, Walk and Roll at Sox Park (officially, Guaranteed Rate Field, because, um, why?).

It was our fourth year at this fundraiser and rallying point for all things ALS: research, patients, patient support, families. We had crossed over -- many of us were now wearing the "forever in our hearts" edition of the Gronk's Grace shirt.

The Les Turner 5K was the first big ALS event for which Kris, my son, put out the call for troops. It was 2014, about a year after his initial diagnosis with ALS. He presided in his power wheelchair, the center of a crowd of friends and fellow teachers from Prairie Oak School in Berwyn. His colleague Amanda Callahan had come up with the idea for the tee shirts. I met new babies, chatted with guys Kris had gone to grade school with and their wives. We walked the walk--there was only a 5K option that year, but I figured out how to cut--not just corners, but most of the middle of the route with Eliza, who was a less-willing participant then than she is now.

The last stretch is inside the ballpark, on the field, all the way around the warning track. Stay on the clay, they tell, don't even touch the grass, and but do look up and around and catch the thrill of being on the field in a huge Major League ball park. You take pictures, with the scoreboard or the home team dugout or some giant Sox insignia somewhere in the background. Afterward you can hang out at the White Sox bar and grill and watch the All-Star game, though Eliza and I departed for home that first year long before Kris and friends called it a night.

(It was just a few weeks later, I think, that Kris and company had their amazing day at the park celebrating the tenth anniversary of the White Sox 2005 World Series victory. Video here.)

Kris made it to the next year's walk, in 2016, where he hung out with ALS celebrity Pat Quinn. By then he'd had a year of being the enthusiastic top fundraiser at the ALS Association Rockford Walk. He was also a whole year deeper into ALS, newly retired from teaching, unable to do things he'd done the year before. Last year, in 2017, Eliza and I participated in the walk with our friends Tim and Tara Dull, Amanda, Jeni Pierce and many others -- though Kris could not be there. Two weeks later, on July 24, he died.

You go to these walks and you see all these family and friends fundraising groups. Some groups are wearing the walk shirt that you get for registering. Some, like Gronk's Grace, are branded with names, logos and slogans on matching tee shirts, which help us recognize each other and give us a shared identity. They say we are strong, even in the face of devastating loss, whether we gather around an ALS patient with us at the walk, or hold someone in memory.

Last night was a beautiful evening, with a cool Lake Michigan breeze blowing in across the White Sox parking lots, and a clear blue sky overhead, stretching west to the city and suburbs and east to the lake shore. I found myself wishing we could all settle in as the sun set and gather around a fire, to lift a glass and share a story.

But that may have been too much to bear and, the inevitable accumulation of sadness may have been all wrong for the evening. Because what was in the air was joy. Just inside the ballpark I watched three girls gather around their mom in a wheelchair for a picture, joined eventually by their dad. The kids pressed comfortably against the chairs that was now part of everyday life at their house. I fought back tears, thinking about how brave they had to be, now and heading into the future. The kids, however, just grinned and the youngest made fish faces as they posed for one picture after another from the phones and cameras of friends and relatives. They were flushed with exercise, excited by the crowd and the location. They themselves were ground-zero for love and joy and smiling grace.

Yeah, it's a crap disease that brings pain, suffering and anger and an early end to people we love. Watching an ALS patient, another mom, struggle to cross the finish line on her own two feet, supported by two friends and a walker, I caught the eye of an older woman, who had just finished her run. She looked away quickly, her face set against the tears--which is what she must have seen in my face as well.

Mike Carmody, Eliza's pal and Executive Director of Opportunity Knocks, a program she attends, has run the 5K race here--all four years, I think. There's the good cause and the memory of Kris, but for him, a lifelong Sox fan, it's also the field. This year he didn't just run around the field once. He kept circling, three, four, five times--as long they'd let him. Stay in the moment and make the joy last. It's a good feeling. It's what you learn at the Les Turner ALS 5K and Walk.

Me, Eliza and Mike



Sunday, July 15, 2018

Hard grace

Anniversaries are hard.

It's July. We're creeping up on the first anniversary of Kris's death on July 24, 2017. Kris, my oldest  child, who died from ALS last summer at the age of 30.

It feels scary to think about walking through July days once again. Like the moment before you step barefoot on hot flagstone pavers or pick your way through shards of glass. Grief and pain that I've let in only by littles in the past year, because that's all I can handle, is rushing at me, like a big wave coming way too far up the beach.

Brace for it? Yield? What will see me through?

Kris's smile in photos Michelle* posted earlier this month on Instagram. His grin at last year's Fourth of July party. He cooked up the idea, invited friends, sat up for it--though not for long. "He didn't eat, drink or barely talk," wrote Michelle. But he wanted to see people. It was the last time those friends would see him. Always up for a playdate, was Kris.

What matters to me as I remember Kris? Caring for people, especially the ones he cared for. Not in the try-to-fix-their-lives style that leaves me overwhelmed and frustrated, but in the standing-by-to-encourage-and-befriend way that was Kris--with the occasional knocking of sense into people--friends, siblings, and, um, mom.



There's the project of finding a cure for ALS and supporting the people who have it, something Kris was passionately engaged in right up to his death. It's an awful disease and if his Gronk's Grace fundraising team can help to bring hope to others, well, that's important and meaningful. It brought hope to him. Eliza* and I and other friends will be at the Les Turner Strike Out ALS Run/Walk on Tuesday, July 17, at Guaranteed Rate Field (really? that's a name for baseball park?). We'll be wearing our Gronk's Grace shirts, keeping up the good fight, remembering Kris's love for events like these and for all the folks who turn out. And yeah, we'll also be remembering Kris's love of the walk on the actual field.

Also this month I'm thinking of the hope and determination, the hard work, the insight, the dedication of Kurt*, getting ready to start medical school. Who knows where that will take him, who he will help, with the memory of his older brother always in his heart?

There's Eliza who says Google in a way that only Kris could imitate. He loved her quirks and worked to make her better at big things, like letting go of boyfriend problems, and little ones, like how to say hard words.

And there's grace in the world. It's hard to find in the headlines, but it's there. Sometimes you have to be in tough straits to see it and know how precious it is. Because it is God's grace, it may be different from what you expect, transformative, yes, but also challenging, hard.

Something to reflect on in this anniversary month.



* Family members: Michelle, Kris's wife; Kurt, younger brother; Eliza, younger sister, who has Down syndrome.