My younger son’s football team got crushed in their season opener last night. Not in the little “yeah, they got beat” kind of way, but in the “they got their asses handed to them” kind of way. After a good defensive first quarter, it was a pile-on the rest of the way.
Somewhere in the mid-second quarter, the kids behind us started screaming (and yes, I mean high school freshman maturity level SCREAMING) about how bad their own team was and how they should have gone to a different high school because the other school has better sports teams. After a point, a member of the school coaching staff actually herded these and other students over to create an impromptu “student section.” This is purely my assumption here of course, but I’m guessing she may have been motivated by these kids’ volume and profanity-to-meaningful-nouns-and-verbs ratio. It was shameful, really, the behavior of some of the students. Prior to the coach’s moving scheme, I actually moved away from these students to sit elsewhere, so annoyed and ashamed was I.
I knew it would be a quiet ride home once we picked up our son. My boy takes on the weight of the world, strong and silent kid he is, and I felt pretty sure he’d absorb more than his proper share of the loss. He didn’t play a great game, but this wasn’t a one-blown-play kind of game. We advised him to feel bad for as long as he needed to that night, to consider what lessons might be drawn from his play, and come up with a plan to improve. OK, first actually was to feel bad as long as he needed to, then OMG take a shower, then consider what he’d learned.
Not long after his shower, which is where all my best ideas are incubated, my kid recognized a few ways he got beat by his opposing linemen. He understood what made them better last night and identified moves he needed to add to his practice. After dinner, he created a Snapchat group with the guys (not sure which guys, which positions, but guys he felt he needed to communicate with) and shared with them his observations. THAT, my friends, is leadership. THAT is character.
My kid attends high school in the most highly impoverished district in our state. He isn’t the kid attending football camps or mental toughness seminars all summer long or playing on a team clearly violating the state athletic association rules about when kids are allowed to practice. They don’t have a $6 million locker room–they don’t even have a football field on which to practice! He wasn’t the only one doing so, but watching my kid prop up one of his teammates when he himself was taking a beating AND getting screamed at by his own “fans,” says everything you need to know about my kid.
If he never makes another tackle in his life (he will), if they lose out the entire season (they won’t), he can walk off that gridiron late in October with his head held high. Character doesn’t show up in the W-L column, but no matter what he does in this life, this kid will always get the win.
Second row is not the front row, but the second row wasn’t too terrible either.
Actually, I won’t. Or more likely can’t. Nearly three years after purchasing them, my Last Summer on Earth 20202021 2022 ticket barcodes were finally scanned last Monday night. After their tour had been delayed twice, my Barenaked Ladies, et al. took the Chicago stage. I spent Canada Day evening at their Indianapolis concert, and NO, two concerts in one week is not too many. It’s not enough, frankly, so back off, man.
The tour went on sale in the fall of 2019. If you’ve been following my story for any length of time, you’ll remember that 2019 wasn’t exactly a banner year at Chez Weir. The accident remains one of those “just yesterday and also a million lifetimes ago” deals. For most of modern humanity, 2020 stands alone as being the worst year on record, but for me 2019 will likely always sit atop the podium of personal disaster. Please, please, please let it be our worst year–it HAS to be! I’m not so narcissistic a human that I view my own period of devastation/change/sadness as worse than the suffering of the global pandemic and the loss of millions of lives. Jaysus, even I am not that selfish! It’s just that 2019 was really, really, really tough for my family and me, and I’m still in recovery. 2019 was not the year for me to be buying big time concert tickets, and it’s good to get a little help from your friends is what I’m saying.
The pandemic has illuminated to me just how much a glass half empty gal I am. I’ve begun to expect disappointment so that I don’t much expect good things to happen. But they do, good things do happen. And even in a world where women’s rights have been stripped, separation of church and state has apparently left the building, mass shootings are de rigueur, and war atrocities barely earn a passing glance anymore, good stuff can and does happen.
Being at a concert allows me to forget the rest of the mess for a while. When you’re up front, being up front is all you can do. There’s no multi-tasking when your favorite musicians are bringin’ it seven feet away from you! There’s nothing that can’t wait for those 90 or so minutes when you’re fully immersed in the lyrics and melodies that define most of your adulthood. During the shows, no one needs me to do a thing or play a role, or help them in some way. There is nothing to do except dissolve into the music. And I did.
When the band plays the Big Bang Theory, those in the know understand the concert to be winding down. It’s about that time my pre-sad-that-it’s-going-to-be-over despondency begins to wash over me–it’s the windup to the it’s gonna be over too soon pitch, and yes, it’s a sad moment in the midst of joy (see, I told you I was glass half empty. . .). My hardcore BNL friends and I experience Post-Barenaked Ladies Syndrome after the shows we attend. PBNLS is real, yo, and you know it. Maybe your PBNLS is spelled differently, but you know that feeling of letdown after you get to experience something you’d much anticipated and looked forward to, right?
But for the first time in maybe ever, I’m not sad my shows are over–I’m grateful to the ends of the earth they happened. Spending an overnight in Chicago (soundcheck!!!! OMG, thank you Adrea and Leslie) with Ann was magic, even more magical than the miracle of NO traffic getting into the Loop. Getting in a road trip before she moves out of my time zone again next month with my BFF Deb, was a gift (Nikki, I’m sorry you couldn’t go and #ketchupandmustard forever, but thank you!!!!).
There are wrongs that must be righted and fights I’m going to have to fight in the days and weeks to come. But not last week.
Last week I didn’t have to plan or get my son to his university orientation five hours from home. Last week I didn’t have to worry about my husband’s COVID status (he endured mild cold-like symptoms and is since decidedly negative) or my brother’s, whose run with COVID is no walk in the park. Last week I didn’t have to work either of my side jobs. Last week I didn’t have to drive anyone anywhere–OK, well technically I did drive us to Chicago and Indianapolis, but I didn’t have to chauffeur anyone to the local hospital for post-surgical follow-ups or arrive hours early for baseball warm-ups. Last week was all about the return to semi-normal with my Canadian musical heroes, these four incredible talents who have carved out the brain space to remember me and show me, some rando weirdo fan, kindness, humor, and concern. Being at a show made me feel a bit less broken.
I’m finding it hard to give voice to my inner voice–I can’t find the right words and string them in the right order. Last week reminded me that even though I paste a smile on my face, performing the role of functionalmiddle-aged woman and mostly failing at it, indeed I am one of the lucky ones.
I’m paraphrasing generously, but my favorite singer spoke about music being an outlet to channel feelings. I don’t write songs, but I concur with complete certainty that writing (in my case, here in this silly online forum) has helped me work through my feelings. Talk to someone, Ed implored, introducing Live Well. He bared all in sharing how his therapist provided the perspective and words that changed his life. I talk to you here, and it’s not enough exactly. But it’s not nothing.
It’s inconsistent to feel happy in a world that’s on fire. I’ve been fighting on many fronts hard and long, yet still I feel I’ve done nothing near enough. But I’m exhausted mentally, emotionally, and yes, even physically. There is an emerging body of research recognizing good and fun as a necessary alternatives and coping strategies to maneuver this scary world and accompanying barrage of doom-scrolling. I’ve got lots of studying to do, but I definitely earned a 4.0 GPA for my efforts last week.
Last week? It was pretty good. In a word, how I feel about the tour? To steal a word from Tyler: grateful.
My big kid graduated from high school! Milestone events like a graduation create space for reflection, and I’ve been taking a hard, long look in my rearview mirror this past week. I see my son on his first day of school, I see him performing flawlessly at his first piano recital and drumline competition, I see him as I drove off after delivering him to summer camp, I see him in 2018 wearing his blue “Class of 2022” high school orientation tee shirt, I see him looking so dang grown-up in his light grey prom tux. I remember these major milestones and wonder at all he has experienced.
I also see him in a million quiet, unremarkable moments in between. I see him lying in the grass petting our sweet Izzy-girl when she was still with us, I see him perched atop our coffee table strumming along to every Jack Johnson song on the Curious George movie soundtrack start-to-finish, I see my elementary school-age author and illustrator drafting his own Titanic and tornado tales at the dining room table, I see him asking me if MD meant he was going to lose his walking.
At my eye exam last week, my optometrist, father of three under five years old, asked which stage of parenting I thought was the best. It didn’t take me long to reply that every stage has been the best. God, I miss his sweet, squishy little face, how his first-blue-then-green eyes would light up when I walked into a room. But I also love that he’s created a life apart from me, forging friendships, developing his own internal compass, his own beliefs and opinions.
Lots of parents share memes about their teens’ attitudes and I recently shared with my graduate that seeing those moms-group memes made me realize that neither he nor his younger brother have ever pushed back for no good reason. This is not to say they’re perfect and that they’ve never given me even a moment’s grief, but it’s mostly true: they’re good humans with an infinitesimal amount of attitude. I’m lucky but I’ve also been an active, present parent, so I think I had a little something to do with it, but honestly, I know they are caring, decent young men of their own accord. Blind to the heaps of laundry and mountains of crap on the floor, oblivious in the ways of cleaning their bathroom, and for the love of god take out the trash without being reminded!! sure, but good at the core. Graduation made for a good time to notice the good.
Taking it all in, it would seem!
Prior to the ceremony, I told my son I would behave in a dignified way, that I wouldn’t whoop and holler when they read his name, but that I would internally be bursting at the seams, likely dissolving into a puddle of tears. I’m such a liar. My kid looked so. damn. happy. and was having the time of his life down on that arena floor. I was unable to contain my exuberance and oh yeah, I hollered and cheered. And he smiled and kept smiling as did I. As AM I still.
The fifth grader who, back in 2015 asked me if he was going to lose his walking, walked across that stage as a member of the Class of 2022, his face the purest expression of happy I’d seen. I did not cry last Tuesday, but I am now. For all the exceptional highs, all the heartbreak and devastating lows, and everything in between, my eyes well up, but not over. I believe this is what joy feels like.
Their recessional song was Hey Look Ma, I Made It by Panic! At The Disco, a perfect fit for the occasion. My kid tossed his cap and bopped his way out of the arena still smiling. The downtown street in front of the arena was temporarily shut down to make space for the grads and their families. We reunited after fifteen or so minutes to congratulate him and his friends and to say that we’d stick around waiting for him as long as he needed to take it all in. What was to have been an evening of thunderstorms ended up picture-perfect, near eighty degrees with a warm breeze–I don’t think anyone wanted it to end.
Hey Look Ma, He Made It
I am not sure how to close out this post, the right words just won’t find their order. His school invited families to write a “senior send-off,” messages that would be printed and shared with each senior at their graduation practice, so I’ll leave you exactly as I left him.
When I think about your high school years, it’s easy to think about what you didn’t get to do. Your freshman year ended with Dad’s accident, sophomore year ended abruptly with the scary, uncertain, apocalyptic feel of the pandemic closures, you didn’t even get to attend one live class your junior year, and senior year has been fully masked so you’re still not exactly experiencing a normal year in the way you “see” your friends. But instead of what didn’t happen, I hope you remember the incredible things that DID.
Attending Reagan opened so many musical doors for you. I don’t know if you can even remember how excited you were about Radio Reagan freshman year, but I do. I was entirely blown away by your participation in the competition drumline! I could barely believe my ears and eyes the first time I saw you perform. Auditioning and being chosen for Milwaukee Youth Symphony Orchestra was another accomplishment, and I was stunned again the first time I heard your Calypso ensemble. I know how much you wanted to be part of the Pit (so glad you got to this year!), and you just don’t know how exciting it was for me to hear musical compositions YOU wrote being performed.
You met kids whose families come from all over the globe and through your classmates gained a broader worldview than I ever had during my high school years. Your IB classes opened your mind to conversations, experiences, and opportunities I would still love to engage in myself. I’m so proud of you for selecting and sticking with Full IB. Through your challenges, you learned to reach out for help and I KNOW how hard that is/was for you. Be grateful for your teachers whose gifts they freely shared with you. You connected with a number of adults at Reagan–recognize what it was in them that made you feel safe and cared for and try to return that to others in your time, in your way.
I don’t expect you to have all the answers as you head off to college, but I hope you keep asking questions. I can’t wait to find out what it is that lights the fire for you as you move forward in this world. I’ve got this feeling that you are exactly where you are meant to be as you head to a university 299 miles away from home. I can’t imagine how quiet our house will be while you’re at school, but I know that you’ll be forging YOUR path, the path you’re meant to make and follow. Remember the joy you felt at prom. Remember the good friends you’ve made. Remember the classmates and teachers who’ve inspired you and left an imprint. And know that all that and more still awaits you. Endings are hard, so I won’t tell you there won’t be some sad moments mixed in with the incredible excitement, happiness, and pride you should feel as you graduate–the word “bittersweet” exists for this very occasion. I love you more than you’ll ever know and I’m proud of you, Kid. Love, Mom
I want to relay a sequenced narrative–it’s a critical skill I teach my students in speech-language therapy, but I find my brain (mis)firing on all cylinders and in nonlinear fashion these days. In lieu of sequence and organization, this post is presented by scattershot bullet points. And if you think it’s hard to read, just imagine what it’s like being in my brain. Actually don’t. You’ll thank me.
Prom/Graduation/IB Testing/All The Lasts
Earlier this week, my first born’s percussion ensemble accompanied his high school choir in their performance of O Fortuna from Carmina Burana (it’s sooooo fun to say). That powerful melody first entered my consciousness in the Rock and Roll Hall of Fame, having been featured in the Michael Jackson exhibit during the time before we knew what we came to know what we know about the fallen pop star. Despite that weird connection, O Fortuna still sends me straight to full-body goosebumps and to know that my kid got to be part of it gave me goosebumps too. Obviously tangled up in emotions after the show, he told me he missed the concert already. You’d think it’d be hard to top O Fortuna, but the closing piece of the evening, an Irish goodbye titled Parting Glass, was dedicated to the seniors. Its performance did what it intended to, acknowledged an ending for many performers, creating strong emotions. He said lots of kids shed tears–some kids openly wept–and I held back a tear or two myself just talking with my kid.
We chatted about how, until now, we celebrated all these firsts–photos captured his first taste of rice cereal, his first tooth lost, first steps, first day of four-year-old kindergarten, first time he rode a bike. . . and now he’s at the point in his life where he’s experiencing all these lasts–last concerts, last classes, last pep rally. . . I’m the least stoic person alive, but I want him to enjoy the moments instead of worrying that he’ll never do XYZ again. *sigh* This parenting gig is not for the weak.
The next few weeks are peppered with exams unlike he’s ever experienced. There’s potential college credit through the International Baccalaureate Organization in his doing well on them, but honestly, that’s not my expectation. In my view, these tests are laying the foundation for college mid-terms and finals, setting up with that expectant set for his next big “first,” heading off to college. Sure, it’d be cool to save a few bucks on college courses, but realistically I don’t expect my kid to graduate from a Big Ten school in fewer than four years. For the next thirty-one days he’s still a high school kid, and that’s exactly as it should be.
And tonight’s his senior prom. **cue the awwwwww**
Our lifetimes are series of firsts and lasts though, I suppose. Each exciting in its way, each accompanied by a specific set of emotions–for the individual as well as that individual’s people. He’s ready for the next steps past high school and he isn’t. I can say the same, ready and not, here we come.
Mother Nature Hates Baseball
Spring baseball season in Wisconsin is the world’s biggest crapshoot. It’s been unseasonably cold and rainy here, and when gale force winds are factored in, it amounts to dangerous conditions for the kids and spectators, really. Still, if I can, I go to my little one’s games every chance I get. I’ve had a love-not love relationship with baseball since the time of my husband’s accident, but my kid’s quite in love with the game. Their first three games were rained out, one maybe even snowed out?? They’ve been able to get eight games in, five under the most inhospitable of conditions, so far this month. Temperatures tonight are in the 50s and it’s gonna feel like the dang tropics for a temperate change of pace. Go, Huskies! #winthecity
I’m Your Social Media Guardian Angel
If you’ve ever wondered how good a friend I am, I’m that good a friend. Someone I know recently publicly posted something on a social media account that was definitely meant to have been sent privately. As I scrolled through my accounts before bedtime, I happened upon a post that stopped me in my tracks, to a point that I wasn’t sure I believed what my eyes were telling me I was seeing. You have these moments where you mentally scroll through a million billion possible ways to convey gently, subtly, but HOLY SHIT TAKE THAT DOWN knowing you need to alert this person ASAP. . . A quick text to my friend led to a quick removal of the content. Yeah, I know I’m skirting around the use of actual nouns here, but see, I’m that good a friend! You can fill in the blanks with your own personal horror shows, but I’ll never spill. Just know that I’ve got your back.
Something Was Wrong
I’ve only recently jumped on the podcast bandwagon. I’d always been a sing at the top of my lungs in the car kind of driver, but this pandemic BS has stolen a bit of my automobile performance gusto. A coworker is super into true crime podcasts, and she’s way smarter than me, so I figured, why not? I’ve been listening to the story of a woman whose fiance revealed himself to be the psychopath/sociopath he is, and the deconstruction of her story feels much like I experienced during my first marriage. I’ve long recovered from mine, but continue to wonder how smart, confident young women couple with really bad men even with a million red flags waving furiously in their faces? It hasn’t been “triggering” for me, but listening has taken me back, wishing I’d known then what I know now. There’s a theme for the ages though, huh?
Amazon Wish List
Speaking of heading off to college, I joined a Facebook group titled something like “College Dorm Essentials,” and y’all, I didn’t even know half these things my son apparently CANNOT live in a dorm without even existed til now. I feel quite similarly to how I felt in developing a baby registry. I didn’t even know what plastic links or Triple Paste or an Eddie Bauer fleece car seat cover were, but was told I NEEDED them. Ohhhhhhkay?? Yeah, same cluelessness, only flashing forward eighteen years, just when I thought I was getting the hang of this being a mom thing! Mattress covers and sheet suspenders and rope lights and and shoe racks for snacks and two sets of sheets and something called a Woozoo fan, and, and, and. . . The only cost for membership in this group was a serious spike in my anxiety, so I muted notifications. I check in maybe once a week and add the gotta-haves to my Amazon Wish List. I’m grateful for what I’ve learned, and people are generous with their information. It’s good to know there are random good people out there willing to share their experiences. And I can tick my anxiety down a notch and a half that I’ve prepared that list of must-haves, ready for purchase in a couple weeks.
Summer Job
Speaking of anxiety, cause yeah, I need MORE OF THAT, I took on a summer job. It’s very intermittent, but with university tuition due and almost no financial aid, I thought I’d better take on some kind of side hustle. Plus I’m close to retirement and need to learn how to interview for a job for the first time in over thirty years. Anyway, I’m not going to say quite what it is yet, but don’t worry, I haven’t jumped on the pyramid scheme bandwagon–I won’t be hawking pricey health care products you don’t need here!
I’ll be working in the hospitality industry a few days per month, assisting travelers getting from Point A to Point B. I can’t even imagine a job I don’t take home with me, but I’m looking forward to a job that ends when I clock out. This is not to say that I’m not taking it seriously, but that I’m not in charge, and when the day is done, the work and the worry quite literally cannot be taken with me.
After my son got his summer job last year, I told him I totally wanted to work there too. The look of pain and immediate “NO” from him was enough to dissuade me–I would NOT do that to him! But this too looks like enjoyable work where most customers are in a pretty good, happy place. Who’s crabby on vacation? Who’s crabby at a beer garden?? Certainly not this guy, who waited in line with us over 30 minutes to get his first outdoor cocktail of the season! Well WE had our first outdoor cocktail of the season. HE had water. What kind of dog owner do you think I am?
Who’s a good boy?
The MDA
The final item I wanted to share today is the unbelievable power of the internet, and not just for the dorm room hacks. As you know, I began writing this blog immediately after my son was diagnosed with neuromuscular disease. Utter devastation was the best I could muster in those early days. I couldn’t speak, but I could write, so I opened this platform, created my site, and began sorting out my broken heart and brain here at my keyboard.
Through this blog, I’ve come to know others from around the globe. Initially I sought only blogs whose writers focused on MD. Though my blog friends circle has expanded broadly from those early days, those early connections stuck. Chris Anselmo is the author of the sidewalksandstairwells.com blog. We read and commented on each other’s posts and later became Facebook friends. Chris now works for the MDA and after I posted about my son’s college commitment, emailed me to introduce me to his friend in the MINNEAPOLIS (small world and all that!!) MDA office, saying that if my son ever needed a contact, needed help with an accommodation or information or anything, to reach out to his colleague. The internet can be a cold, dark, black-hearted place, but every so often you land on a unicorn. Thank you, Chris, for being a beacon of kindness. You’re way better than an actual unicorn.
I did it!! Today may be April Fools Day, but this is no joke: you helped me raise $3,742 for the Muscular Dystrophy Association during the month of March, so really WE did it—certainly I did not go it alone. Who among us does?
The idea was to march in March, commit to 10,000 steps a day for those affected by muscle disease. Late in February, 310,000 seemed an unattainable number, but as this cold, snowy “came in AND went out like a lion” Wisconsin March progressed and the steps kept adding up, I knew I would meet my goal.
Having that goal and making it public made my step goal real, gave it the gravity I needed it to have so I’d dig deep daily. The power of extrinsic motivation in a public forum made for some real accountability, and I moved it! I puttered around the house more, I took my dog on longer and longer walks each day, purposely made more trips up and down the stairs, sat and read less this month (the only downside), and oh yeah, I CLIMBED A MOUNTAIN!
On Monday my husband and I hiked to the top of Mt. Le Conte, rising 6593 vertical feet, seen here photographed from the balcony of our Great Smoky Mountains National Park-area AirBnB condo Monday afternoon.
Nearing the top, I seriously considered turning around. We’d just hiked a lengthy stretch of narrow paths along bald rock faces, still ice-covered and that iciness did a number on my hubris. My husband took over backpack duties at that point and we continued to the top. I had my moment, recalled all my yoga breathing practice, and continued to finish what I’d begun. Yeah, there’s a metaphor there.
High winds and wildfires in Great Smoky Mountain National Park shut down my mountain hiking adventure a day early, so my March for MDA step total fell short of what might have been. Still, I amassed the equivalent of 196 March miles and that’s a lot of steps, y’all. Thank you for walking with me, literally—like my best friend did (except not actually literally because she lives in Arkansas), and figuratively—by being my online cheer squad.
I closed March out with a different kind of big step—with a click of the cursor along with my sixteen-digit credit card number, yesterday my son committed to the University of Minnesota’s Class of 2026! My son is a Golden Gopher! UM’s campus is enormous and of course I’m already thinking about how his muscle disease will affect his life in Minneapolis, six hours from the only home he’s known. There’s plenty of time for my anxiety to rush, and I’m sure I’ll write all about it, but yesterday was a day not for worry, but for anticipation and gratitude.
Ski-U-Mah!
It’s how this is supposed to go, right? Your babies leave the nest while you wait at home, hoping that your best was enough to have laid a strong foundation for their future.
I’m getting ahead of myself. I do that. Ack!!
*ahem* Back to anticipation and gratitude! Today I pause to recognize and honor our collective success. Thank you so much. As I wrote on my socials, as the kids would say, you shine brightly in an otherwise too-dark world, and that’s no April Foolin’.
Only because the chorus screams, “Oh, we’re halfway there. . .” You KNOW you sang it in tune, didn’t you? Yeah, ya did.
Hi, hi. Just a quick mid-month update on my March for MDA. We’re officially at the halfway point and I’m pleased to announce that halfway through the month, I am more than halfway to my step goal of 310,000 steps during the 31 days of March. I sometimes feel a love-hate with my Fitbit as I drone on and on, reminding myself and the world that I’m “gettin’ in my steps,” but this external motivator is doing its job. My work is sedentary and I’m lazy as hell after work most days. Knowing I have a goal has kept me moving even when I didn’t especially feel like it.
Speaking of goals: When I opened my fundraising page, my goal was to raise $200. And because of YOU, I’ve somehow managed to hit one thousand, seven hundred eighty-one percent of that original $200 goal!!! What?? There aren’t words to thank you enough for your generous support. We have raised $3,562 for the Muscular Dystrophy Association and I’m so, so grateful.
Photo credit to Diane Kosarzycki
I have nothing to offer you but entertainment (and I don’t mean reading my blog in this case because we know I’m not fooling anyone by calling my writing endeavor “entertainment”). NO. I’m linking you to the video of my big kid’s drumline competition. I promise you, it’s worth the six minutes of your life to watch it. After NO live, in-person instruction during his junior year, my big kid and his percussion pals hit the floor last weekend for the twice-delayed city drumline competition. Had you suggested my son would perform in a competition drumline, I’d have dismissed the notion out of hand. But seven years after the diagnosis, he’s still marching.
As am I. I March for MDA while my kid marches for the pure joy of performing with his buds one last time, and trust me, his march is waaaaaaay more fun to watch. To say they brought it is an understatement. The kids were killing it in the moment and they knew they were killing it. Is there anything more pure? There sure wasn’t on Saturday. Enjoy the clip (click here, Husky fans!). And thank you.
Between the time of my son’s 2015 MD diagnosis and my husband’s 2019 accident, I (and by I, I mean YOU) raised over $10,000 for the Muscular Dystrophy Association.
You know I cry easily and a lot when I’m emotional, and you know I’m emotional a lot of the time. There has been no shortage of tears since a neurologist told me my kid has MD seven years ago (SEVEN YEARS!?!!). I recall that dreadful January, 2015 day,the diagnosis day, in vivid detail. Still–what I wore, how grey the sky was, how I returned to work and, try as I might, couldn’t stanch the flow of tears when I faced my coworkers. . . Could have been last month.
Early on, I devoted hours, days, weeks worrying about my son’s future. Being the pessimist I am, I envisioned only a worst case scenario. I pictured some featureless adult form, because I couldn’t imagine my then/still/always gonna be my baby fully-formed with an adult face, seeing instead only how hard life would be for him. I saw physical therapy, occupational therapy, mobility aids. I saw him being denied, being less-than, living a life on the outside looking in.
But my worst fears have yet to come to pass.
Which is not to say that he hasn’t had a larger share of challenges than many kids his age. To be sure, he’s faced many a challenge, but along with those challenges have come opportunities. I mean, how many city kids from the Midwest get to play in a Calypso steel pan ensemble? My mantra for him from day one has been this: do as much as you can as hard as you can for as long as you can.
During our MDA Muscle Walk five years, I felt the love, as they say. My family, friends, you dear readers, and I swear complete strangers have supported our walk team, Greater Than Gravity, by showing up on walk day or with your wallets. Or both! I can’t quite express the thrill and shock I’d feel each time my phone app would alert me to a new donation. That little ping is addictive, and I feel fortunate to have been pinged as many times as I’d been. God, I hated asking, but you kept answering. And because you did, my child and others like him who live with neuromuscular disease got to go to camp or got a new motorized wheelchair. Maybe those dollars went toward funding lab research seeking a treatment. I can honestly say I’ve directly witnessed and been the recipient of what the MDA’s dollars do, and these acts are not nothing to the families they affect.
When my husband was run over by that truck nearly three years ago now (THREE YEARS!?!!), our family was again wrapped in your fuzzy blanket of love, great care, and generosity. The way you stood up for me in my MDA fundraising was how your showed up literally at my back door with food, money, gift cards, and shoulders on which I leaned hard and heavily. I abandoned my focus on MDA fundraising to focus on literally keeping my husband alive. I just couldn’t ask the same people who fed me and did SO MUCH for my boys and me to crack open their wallets again.
And I haven’t since.
But here I am, one last time, committed to logging a bajillion steps (OK, 310,000) to support the Marching for MDA campaign. I intend for this to be my last fundraising push for some time–with my big kid heading off to college, our family’s focus will again shift to learning about a different whole new world. This time, instead of learning medical jargon you don’t want to know even exists, we are learning about the world of possibility a college experience affords. If you’d asked me Diagnosis Day, I know I’d have bawled my way through any mention of what had to be the most highly ridiculous of notions–my child going to college. But here he is. Here we are.
As you know, I love getting mail. I was not cheered however by Monday’s special delivery– yet another bill from my husband’s hospital system for yet another in what will be a life-long string of medical appointments. Wendy’s health tip of the day: Do NOT get run over by a truck. You’re welcome!
If I’ve said it once, well, I have said it to fifteen different billing service agents by now, “I simply don’t know to make you understand that none, not one, not one single bill should ever have been or should be submitted to my personal health insurance provider.” Tammy, my October billing service BFF even called me back to say she’d “taken care of it.” You guys, she called me back!! Now I don’t want to call Tammy a liar–honestly in the years since the accident, she was the most compassionate, kind billing rep I’d encountered–but ultimately, she too failed.
Sandra answered the phone Monday but passed me up the food chain at my request. I wasn’t one bit Karen-y; I was polite and acknowledged that Sandra wasn’t to blame, nor was I going to holler at her–I just needed help. Sandra felt that my status was concerning enough to reach Team Leader or Supervisor status. Yay, me! So yesterday’s “fix” (uh-oh, this is the second use of fake-y quotation marks and we’re only in the third paragraph here, so buckle your seat belts, y’all) was attended by Team Leader Kevin. Kevin opened with “What you need to do is” whereby I curtly, though not rudely, intercepted his script with what I knew his script to be–call the workers comp agent (YOU have her number–I gave it to you in October and before that in August, and before that. . .), call Patient Registration (did that thrice), clarify workers compensation insurance upon check-in with each individual provider (did that about 638 times so far), blah, blah, blah. I said he was the fifteenth billing representative to whom I’ve spoken since the accident. Kevin says he fixed it. Now I don’t want to call Kevin a liar, but if sweet Tammy’s magic went kaput, well Team Leader Kevin, you’re no Tammy.
You may be wondering why I get so worked up over this. Well, it’s because my husband’s care needs will extend throughout the remainder of his life, his entire life! I’m old, but I’m not that old, and I just don’t think I want to be arguing with billing when I’m 80. Ha! Like I’m gonna make it to 80.
Puh-leeeeeeeze, Mr. Postman
After thirty-nine minutes with Kevin, et al, on the phone, I opened the next envelope in the stack, this one from the credit union holding our home equity line of credit. We finally paid of 2016’s kitchen remodel with a lump payment. Unbeknownst to us, the credit union required us to pay another $16.81 in some bullshit fee, but whatever, fine, we paid it. THEN this:
A bill for $.02. Two pennies. Two cents of some bullshit LATE fee for our bullshit $16.81 we thought we had paid off on top of the $21.40 you see here. I called customer service, but it wasn’t worth the 22 minutes of my life to wait on hold. They. Sent. Us. A. Bill. For. Two. Cents. Y’all.
The Brake Job
Because The Screwed Over Job doesn’t really have that catchy ring to it. I took my car in for routine maintenance yesterday. The car was due for an oil change, tire rotation, change of air filters, and I asked for new windshield wiper blades to be installed. When I arrived to retrieve my beloved SUV, the service advisor showed me an invoice for $323. Natually, I was all, “what the fuck?” and the service advisor tossed the four-page invoice my direction. Leafing through it, I noticed a service I did not request. “What did you do that cost $159?” to which he stated (eyes averted, that sneaky bastard) that they disassembled and lubed all the brake components. I said that I hadn’t OK’ed that, that the online B-Maintenance Minder did not include a brake job on my version of the HondaLink app. And then I DID unleash my ugliest inner Karen, saying, not quietly, “DAMN. I would NEVER have requested this for a car I’m LEASING and for only one more year.” His reply, again avoiding all eye contact? “Sorry, ma’am.”
I unleashed sooooooooo many f-words once I got into my car, every noun/verb/adjective/adverb/interjection form of the f-word? I covered it. My local dealership probably doesn’t actually care about my “complete satisfaction” as they expressed in their text to me. Not buying it, especially since they haven’t responded since I shared my disappointment.
Let the Wendy/Karen v. Honda Corporate Customer Service battle commence. I should probably enter the arena while I’m still mad about it, and they did send me the link to my survey, so they started it. But I’m gonna finish it.
SLP Professional Development
After the Honda debacle, I tuned into a professional development session offered as a semi-annual series of one-hour webinars. It’s great because they’re free, and while I present PD to my district colleagues all the time, I don’t accrue PD hours needed to renew my certification as the purveyor of info. These webinars are mostly light and practical, intended to be immediately implement-able in therapy, and I find that I’m able to pull out a gem or two from each of these sessions.
Not this one. Nope. Within the first twenty-four minutes, and yeah, I counted because I was already pretty pissed off Monday, within the first half of her session, the presenter made three disparaging remarks about more experienced SLPs. I was livid! And I was done. I’ve also presented on the very topic she was, so hers wasn’t new information to me. I let the webinar play because I wanted my freebie credit, yes, but also because I wanted to provide feedback.
When the presenter made three age-related negatively-slanted comments within the first 24 minutes, I admit that I was turned off and tuned out for most of the rest. I’m a veteran SLP in a leadership role, and I present to a diverse group of SLPs routinely, including on this topic. I respect my audience, making no assumptions based on experience or lack thereof. I did not find X’s “if you’re Generation Z, you might need to have someone explain the meme,” “17 years is more than most of us have even practiced” and “experienced SLPs are less likely to consult practice research” comments funny or accurate. X, I urge you to reconsider your tone–if you meant to be funny, it did not necessarily translate.
Remember that scene in the film Fried Green Tomatoes, when Kathy Bates slams into a parking space “stolen” by some young brats? She says something like, “Sorry, girls, I’m older and have better insurance.” Preach.
As a presenter, I would want to know if I was offending audience members. A few years back after I presented something, a good friend called me to remind me to check my tone. I’ve never forgotten the lesson. So my feedback wasn’t all Karen-rage; truly, I would want to know, I’d want to do better. I hope the presenter takes it to heart. I can do humor that tries and fails, but I can’t do arrogance.
Parental Controls
My Monday workday was terrific, but the hours between 4:00 and 9:00 evoked lots of curse words, anxiety, and I’ll even admit to some rage. I’m not saying my coping mechanisms are effective y’all. But instead of drinking or throwing something at the wall, I wanted to cap off my shit evening with a fun TV show. I began watching The Sex Lives of College Girls over the weekend, and knew that a quick half hour of their lives would happily distract me from mine.
But no. HBO Max would not allow me to override the Parental Controls which I don’t even have set anymore, HBO!!! So I was blocked from watching an over-18 show by some random app who obviously doesn’t know about my grey hair and advanced nighttime anti-wrinkle serum.
I wanted to cry. And if you think that sounds like an immature, unhealthy, unhinged type of response to not getting to watch a television show, you are 100% right.
Unplugging and restarting my TV did the trick, and allowed me to shake loose the day’s dirt. If only we could unplug the rest of our lives and reboot them when they’re problematic. Wouldn’t that be swell? It would. I ended this dreck of a Monday with Parents’ Weekend at Essex College. I got the laugh and happy distraction I needed to slough off the ugly and start Tuesday in the least Karen-ish way possible.
Here we sit on the very cusp of a new year, still/again raging with COVID-related uncertainty, but still, what’s perceived by many as the most hopeful night there is, New Year’s Eve.
The only thing that’s predictable these days is my continued stand against New Year’s resolutions. I don’t make resolutions, or even pretend anymore! Most years, I’m out before noon, and that’s just defeatist. Real, but defeatist. So my hope?
My hope is that the New Year’s Day snowfall predicted in my corner of the world delivers. It would be super-amazing-fantastically awesome if, unlike our Christmas Eve festivities, our New Year’s Day festivities included electric power to our home. Yep. The moment my uncle and aunt arrived for, and thankfully WITH dinner Christmas Eve, our power went out and remained out until, and I swear, until my aunt said, “Well, we should probably get going” after six hours in the dark. So I hope our power grid holds.
I hope my children will be able to return to in-person learning in January. Based on what I’m reading, I’m among a very small minority of educators who want teaching occur in person. I’m a full-on COVID-believer, so this doesn’t come from some whacko flat-Earth point of view, I just feel my children learn better and enjoy better mental and emotional health when in school with classmates. I understand that might not happen, but that doesn’t mean I can’t hope for it, right?
I hope my big kid gets one more really important to him college acceptance letter, the ONE upon which every other college visit and future choice is pinned. He has four incredible options already, so he can’t lose really.
GoodReads provided this little visual of some of the books I’ve read and the Pic Collage app created the visual.
I hope I continue my reading blitz. Somehow it ended up that I completed 62 books again this year, which is the exact same number I read during 2020. Weird, huh? I’m finishing up a book about memory, and feeling much less frightened about the decaying state of affairs in my hippocampus. It’s enough being the family’s executive functioning, more than enough. Way more than enough. I’d begun to doubt my ability to manage, but his new information gives me hope. It’s not necessarily my memory that’s failing, it’s the attention. And there’s only so much to which I can attend (see above for being the family’s nerve center), so my brain doesn’t encode the minutiae it once did. It’s more complex than this, obviously, but it’s a start.
I hope I continue my yoga practice on a slightly more routine basis. I’m inconsistent at best, but like reading, yoga is something I get to do all by myself in peace and quiet. If it’s wrong to want to be alone, I don’t want to be right.
I hope my friend gets clear updates about her husband’s new and unwelcome long-haul type of medical diagnosis, and I hope her husband gets excellent care.
I hope I get to see my favorite band in concert in 2022. I have tickets, carried over for three years now, but even now who knows if this tour will come to fruition? It had gotten to a point that I infrequently even listened to Barenaked Ladies anymore these days, even with 2021’s new album release! They’ll probs pull my fan card after this admission here. I won’t be able to explain it well, but listening to them on the high rotation (read: constant) I had been for years made me miss them, miss concerts, miss my friends I’ve made because of them. For the first time ever, I felt sad listening to them–missing my constant auditory companions, missing the anticipation of shows, so not listening made me miss that part of my life less. Does that even make sense? So I hope for Barenaked Ladies concerts in 2022!
I hope my best friend’s move goes smoothly, and that our living in the same time zone for the first time since college means more together time. We’re already percolating the idea of a road trip (and by road trip I mean staying pretty close to home still because I fear being away too long), but still. A road trip?? It’ll be like college! Except with higher-quality food and beverage. And we’re way smarter now. Well, she is anyway!!
New Year’s Eve and July 4 are my least two favorite “holidays,” and yeah, I put the quotes around holidays here. I’ve just never been into either, but I always feel like I’m SUPPOSED TO be totally into it, and my disinterest and ennui mean I must be missing something. What am I missing??
If today’s your day (night), raise a glass to the hope of a new year and enjoy your celebration! I am the least optimistic person I know, but I’ll say it anyway: bring it, 2022. I’m about as ready as I get and I’m hoping 2022 is looking up. Happy New Year!
I recently wrote about how I was not sending Christmas cards. What’s that phenomenon where you what you talk about is suddenly everywhere? No, not the “my iPhone is eavesdropping on me” thing, but the neuropsychological construct that you begin to see something everywhere after your attention is called to it once? It’s not that those things weren’t there before, but our brains just never noticed them until we did, and then they’re everywhere?? It’s a thing. Can’t for the life of me remember what it’s called. Great story, Wend.
The point. *ahem* The point is that since broadcasting that I’d hit the pause button on sharing our annual dose of holly jolly via US Mail, I’ve noticed “I’m not sending Christmas cards” memes everywhere! OK, so they’re not actually everywhere, but I noticed one, and now I notice them all. If it’s meme-worthy, then not sending cards must be a rule instead of the exception these days. Look at me all setting the trend years ago, so ahead of the times.
You know, I have spent more on vodka during the pandemic than ever before. . .
Blowing the timeline for cards marking A Very COVID Christmas 2: Still Masked in 2021 provided occasion to walk through the early days of my blog. I wondered if I’d chronicled the first year I lost my card spark, and sure enough, learned that I stopped sending Christmas cards the year my son was diagnosed with muscular dystrophy. Coincidence? I am sure not.
2015. 2015?? How can it be nearly seven years since that awful January diagnosis day? 2015 felt cruel and cold. I was rudderless, anchored by Barenaked Ladies concerts and this here little creative writing outlet. Though I was surrounded by friends and family who then showed me incredible kindness and support (and do still now), my holiday joy was tempered that year. Since THAT dreadful year, my husband was nearly killed in a catastrophic work accident, then, well, you remember the pandemic year? And now still a pandemic year?? Do you wonder why I’m a little glass half-empty Grinch-y? I sure don’t. I don’t wonder one bit.
2021 wasn’t my favorite orbit around the sun, but was it anyone’s? I mean, 2021 sucked less than 2020, so there’s that. And while most of the rest of the world reviles 2020 the most, I’m still super pissed about 2019, therefore (drum roll, please!) 2021 wins my contest of who’s not the worst of recent years. Yay, 2021! You’re not the worst!!
To be fair, 2021 offered some for reals bright spots. Like my big kid’s senior pictures (and a few college acceptance letters)–
Like my little kid’s football season–
Like spending a few responsibility-free days with my college friends–
Like “talking” to my BFF more often via the Marco Polo app and rediscovering classic photos, which I’d share if only my iPhone weren’t so old and dysfunctional. And if you are in fact listening to me, iPhone, maybe you decide to start downloading pictures, yeah? Thanks.
Like being awake for both the moon and sun rising over the Atlantic in Myrtle Beach. Our COVID spring break road trip took us to a South Carolina oceanside condo. We didn’t close the doors once–
Like celebrating the Milwaukee Bucks NBA Championship with a half million of our closest friends–
So, see? Even me, the eternal pessimist, found some literal and figurative sunshine in 2021.
If I were sending Christmas cards, they’d look a little like this and y’all would totally be on my list! You would!! Merry Christmas, dear readers. I wish you happiness, good health, and the love of family, friends, and friends who feel like family.
I wish lots of things–crazy dreams like eradication of COVID (and for that matter, eradication of muscular dystrophy, but unlike COVID, you can’t get a vaccine to protect you against MD). I wish for purpose toward the greater good and common sense among the masses, genuine care and compassion for one another, and accountability for people perpetrating truly terrible acts. But I’m not a kid and I know Santa’s elves can’t exactly wrap and put a big ol’ bow around the gift of human decency to place under my tree. Doesn’t mean I can’t wish for it though. Peace and love to you. I say this and mean it with complete sincerity.
What’s with the green lights?
Oh, and I had to look (and subsequently retitle this post). The seeing something everywhere once you finally notice it deal? It’s called the Baader-Meinhof Phenomenon, also known as the Frequency Illusion or Recency Effect. I learned about it on The Happiness Lab, a podcast by Yale professor and psychologist Laurie Santos, whose online class I took and loved in 2020–I went to Yale, y’all!! OK, I didn’t exactly go to Yale. . . I think I heard about it there anyway (my memory’s not so hot anymore either, and I’m actually reading a book about memory, but that’s a topic for another time). Pay attention to how you notice things now. Like when you have lunch somewhere you’d never heard of, and then see advertising for it plastered across hotel shuttles on your way home from the very spot or see maroon colored Honda Passports everywhere you look. It’s not that the SUVs or signage weren’t there or the restaurant wasn’t there before, I just didn’t notice them, and then I did. Notice what you notice. . . Maybe some of my crazy Christmas wishes already are and/or can become reality if I simply were to attend to them and take notice.
Greater Than Gravity 