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.

Sunday, June 17, 2018

Father's Day, 2018

Michelle texted me a Father's Day greeting this morning, "Kris gets to share Father's Day with Lon today. How wonderful that must be!" I smiled and texted back a little later. But meanwhile, I tried to picture what that might mean, Kris and Lon together in heaven. What that might look like.

Just a few minutes earlier I'd run a computer search on "Lon," looking for a photo to post on Facebook. I got distracted from the photo project, but not before noting that much of what turned up in the search for files with "Lon" in the name were notes I had made about his behavior in the early days of his dementia, when something was going on but nobody seemed to know what. I was trying to document what that something was, so there are a lot of these little files. Perhaps I'll do something with them someday. But today, I thought, I'll open just one, just one and that's it.

So I did, and it was a paragraph about a tricky situation, a parent-teen softball game at church. Kris was planning to go, but he did not want Lon there, for fear of a scene. Lon, however, had read about it in the church bulletin and was making plans--because, hey, he loved softball, he was a great softball player. He was walking around with Kurt's glove and Eliza tried to take it from him. He threatened her with a fist, she had a meltdown, and then he turned into a kind parent explaining condescendingly to her that she should do what big people tell her. She was ten or eleven, and she knew that she was right and he was wrong, but she had not yet learned sometimes we had to let Dad be. And poor Kris, trying to figure out how to manage all this, appealing to me for help. He did not want Lon to be around his friends and their parents, with his craziness and misreadings exposed to others. He was afraid Lon would get angry, would look stupid, that everyone would end up deeply embarrassed.

I remember the day, but I don't remember what finally happened. Whether we outsmarted Lon and kept him from the game (which sounds mean and cowardly, but trust me, you do what you gotta do when you can't reason with people). Or if he actually went and the worst didn't happen--I'm thinking maybe he just watched the game, choosing to sit on the sidelines, aware and afraid that it was all too complicated, too bewildering. Better he should fake it on the sidelines.

So when it came time to imagine Kris and Lon together on the other side--wow. I could picture a six-year-old Kris "wrestling" with Lon on the bed. Or the 12-year-old baseball player whom Lon was so proud of. And then a lot of hard times, a lot of stuff to be angry about, to grieve, and a lot of responsibility that should have been a father's that was shouldered by the oldest son.

Eliza is celebrating Father's Day by watching the Barney tapes that Dad brought home for her when they arrived as preview tapes at the paper in the days when he was a TV critic. Barney and The Brady Bunch are concrete things her dad gave her. Kurt is moving into a new place today, where he will live as he studies to become a physician.

Me? I fled the Barney tapes and tried reading in the back yard. But it's too hot. Came back in and I'm playing music in the living room, louder than "She'll Be Coming Around the Mountain" that's playing in Eliza's room. I'm listening to Van Morrison--Lon's favorite artist, but a 2018 album.

Past, present, future for Eliza, me and Kurt. And Lon and Kris living in God's new creation, loved and reconciled and healed.

Tuesday, June 05, 2018

Mr. Rasmussen

I went upstairs thinking I'd find my high school yearbook from senior year on the shelf on the landing by the attic. It's not there. One of the annual shiftings and migrations of the household book collection must have moved it to a box in the attic. I'm sure it's there — but too many layers down to look for in the fading daylight.

I wanted the yearbook so that I could read the dedication page again--the one where we dedicated the book to Mr. Rasmussen—Wayne Rasmussen, who died on Sunday after a long career as teacher, coach, pastor and general all-around inspirational figure.

The photo on that page (which I remember well, because as editor I exerted a strong voice in its selection) is a photo of him in the front of his classroom, a man in action, knees bent, arms extended--more like the alert, defensive stance of a basketball player than the posture of a world history lecturer. But that was the thing — you never knew when the ball — er, the question — was coming to you. Whether it was the date for William the Conqueror's conquest of England (1066) or the Glorious Revolution (1688) or the democratic uprisings in Europe (1848), he made sure that you left his class knowing these important events, and not just the dates, but what they meant for western Christendom. Maybe even what you thought about them. And certainly something about how power works in the world — a lesson reinforced by several class periods spent building armies and attacking across frontiers in games of Risk. (Please know, that while these dates are indeed engraved upon my memory, I did Google them all just now, just to be sure, so as not to disrespect Mr. Rasmussen's memory.)

Mr. Rasmussen taught world history, Latin and religion at Walther High School in Melrose Park during the years I was there (1968-72) and several years before and after. People took Latin just to have him as a teacher (though not me--destined as a musician to study German). I think I also had him for comparative religion, a subject that would also have been steeped in world history. I had a sense that he was thoroughly, probably conservatively, grounded in Lutheran theology, but what I remember most was being asked to think. Something stronger than just being asked--jolted, startled, awakened. The kind of thinking that makes growing up exciting.

He signed my yearbook —- on that dedication page, sending me off from high school breathless with an affirmation of my abilities and of God's goodness and power in my life — in Gwen's very specific life. And I am but one of many who he encouraged and fired up. Their names have been showing up in Facebook comments all day.

The Facebook page for the church Rasmussen served reports:
Pastor Rasmussen selected Ephesians 2:9 - 10 as the verses he wished to be used for his funeral: "For by grace you have been saved not a result of works, so that no one may boast. For we are God's workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." (ESV)
Grace. Of course. That explains everything.

Monday, May 21, 2018


Yesterday was a long, teary day. I'm not sure what set it off--though oddly, perhaps, it may have been urged along by having not quite enough to do, moment to moment on a busy Sunday. There was a lot of emotion on display, here, there, and everywhere, and insufficient distraction.

Or maybe it was something I read and thought and talked over with myself before leaving for church. I'm reading "Birthing Hope: Giving Fear to the Light," by Rachel Marie Stone, and inevitably it's led me back to retelling birth stories--stories of my children's births--sometimes to others, more often, to the couch and the easy chair across the living room.

I won't start in on the stories here, though they are stories worth telling--well-crafted by this point, inflected to serve as prophecies for the people those babies have become, or became: Kris, the longed-for, with the long labor; Eliza, the smart and beautiful daughter, diagnosed with Down syndrome; Kurt, the thoughtful and self-contained philosopher, even at birth.

What I was remembering, I think, early yesterday was the dark place one goes to in labor, the powerful rushes of contractions, the painful sensations of the uterus opening, the powerful mechanics of a baby moving down the birth canal and under the pelvic bone and out onto the breasts of a delirious mother.

Probably I should not go to church in that state. Every little thing that follows can hurt when you're in a state like that, and Western liturgy was not designed to affirm female life experience. I don't wish to debate that right now, because debating in and of itself is part of the problem.

Skip to the end of my church day--which was the Carl Schalk descant to "O Day Full of Grace." Vowels and consonants, I told myself, my strategy-of-choice for emotional spots in music. Just sing the sounds, not the words. But my mind snapped back to my son Kris's death last summer already as  I sang "When we on that final journey go," and the gut-it-out low notes that followed for "We'll gather in song, our hearts aglow," were the end of me.

Powerful feelings. Powerlessness. Was the Spirit present?

I pray she was.

Tuesday, May 08, 2018

May evening

I'm sitting in my backyard typing up a cheat sheet for junior high students performing Finian's Rainbow. It's a cool show, with singable, stylish songs originally from 1947, but it's not one of those shows where the story is thoroughly integrated into the songs. So it takes a little studying to know what comes next. The kids won't know it, but putting together the cheat sheet about who has to be where is as much for my benefit (I'm the director) as for theirs.

It's almost dark and the birds are singing good night. It's only my second night outside this spring. People walk their dogs. Just watched a man in a dress shirt use the flashlight on his phone to help pick up dog poop. High tech, low tech--we're all these things these days. If this were a fancier, newly remodeled backyard, I'd probably have a charging station coming up out of the ground underneath my patio umbrella. Alas, I don't, so this will be a short post.

I think I hear a rotary, push mower going a couple yards over, speaking of low tech, or low-tech nostalgia. I tried one of those for a summer, then bought a new electric mower.

It's good to be out in the spring air. With sounds. the occasional neighbor walking by, soft, quiet darkness.

It was a long winter. It is a much-longed-for spring.

Sunday, April 29, 2018

No words?

It seems to be a thing these days to say, "There are no words" and then to trail off, or shake one's head, mouth slightly open, but with nothing to say.

If it is a thing, a catch-all polite phrase from the second decade of the 21st century, I reject it. And yet a few days ago I found myself starting to type "There are no words ... " in a Facebook message, replying to someone telling me about a mother and father who had recently joined the "I've Lost a Child" club--the club of which I, too, am a member. (No officers, no seniority rankings, no membership records, no secret handshake. Just this one awful shared fact.)

"There are no words," I typed, slowly and deliberately. I had no useful advice about getting through life's dark moments, no sure-fire scripture that comforts me. And I don't like rants about grieving, or truisms about carrying love for this child in your heart for the rest of your life.

But "no words" was not a satisfactory choice either. And a Facebook message was too small a box in which to draft an alternative. I clicked on the bookmark for The Perverse Lutheran and the link to start a new post and faced a much bigger space with no words.  The trouble was not so much with finding them, but with liking the ones I found and leaving them alone once I had typed them on the screen. This post sat as a draft for more than a week.

There must be words. What are we without them? What else can we balance on, walk with, reach toward, but explanations that use words?

Words help. Years ago when my husband wandered off into dementia, my kids and I talked about Dad's delusions and about how we felt--angry, helpless, sad, frustrated, resigned, spooked. We put words to things as best we could. Words made uncomfortable feelings into things of substance.