I did all the right stuff for 2-1/2 years. I stayed home. I wore a mask. I cleansed and sanitized my hands so often they cracked and bled. I even somehow managed to evade COVID when my husband, with whom I shared a bed right up til his diagnosis day, succumbed back in June.
Testing my little guy proved a bridge too far.
We returned from the Twin Cities late August having delivered Child #1 to The U. To say that my immune system and every other element involving my body, heart, and soul had been taxed and tested to its limit is underselling the emotional wringer that dropping your firstborn at college is. I was trashed. I was vulnerable. Little did we know upon our homecoming that our younger son had been exposed–of course, he didn’t know he’d been exposed until he came home from school, utter garbage on Thursday that week and by then, well, this is why COVID is still a thing. He tested positive Friday morning. The boy lit up that test strip like a Christmas tree! By Sunday evening I was achy and my throat began to tickle.
With the hubris of well, the hubris of the comically uninformed and willfully ignorant, I became convinced I would be impervious to COVID. I hadn’t endured even the faintest hint of a sniffle since my husband’s accident and I wore that badge like it had been an Olympic medal hung around my neck. Simply put, I (not really but a little) believed I was just never, ever, ever going to be sick again. I figured the universe was like, “Girl, you’ve been through a real lot the last couple years and you’ve got a metric ton to manage as a result of that never-ending shitstorm, so we’re just gonna give you a pass on the common cold, the flu, and oooooooooobviously you’re never gonna get COVID. You’re gonna be one of those people who participate in some ‘how’d they never get it?’ study” fifteen years from now.
I kinda actually believed it. Well, I wanted to believe it anyway.
Twenty-one days past my positive test result and twelve past my negative, I remain bone weary. A slight dry cough rears its ugly head a few times a day, but that, with the help of an industrial size bag of cough drops is manageable. It’s the tired that’s killing me. I. Am. So. Tired. And I miss my grey matter firing on all cylinders. The brain fog is real and I think a person can’t really understand what that means until it’s experienced. You wouldn’t believe me, but then you would.
I don’t *think* I’m a long-hauler, but my bounce-back trajectory is a long, minimally arcing up line, not the spike I’d expected and (damn you, hubris) assumed would be my fate.
On the bright side? I can stay awake all day long now! I went to yoga class, and met my intention to finish class. Twice! I ran two meetings where I was the one in the front of the room and probably provided clear information and correct answers, buffered by my ace comedic asides. Probably.
I didn’t talk much about getting got. I didn’t bring anything new to the discussion really, but I’ll say this—to those of you still holding tight to your anti-vaccine/COVID is a hoax stance, please consider science. I was knocked out by my vaccines and booster, for which I felt extremely grateful (having access to the vaccine, not the ague, though compared to death is a TOTAL WIN). I don’t know if this necessarily follows, but I think if I’d contracted COVID prior to the vaccines, I’d have been in a real bad way.
If I had to cave to the corona, my timing was good and my timing in this world sucks about 98% of the time, y’all. Maybe I should buy a lottery ticket? Maybe I should be quietly thankful I reached retirement age in otherwise good shape and good health.
I can retire, it’s official. I can’t retire for reals because I like to do things like eat and pay my mortgage, but it’s pretty sweet knowing that my career days are numbered. It makes the days I think about work-crying less tearful. It makes the frustrations less frustrating. It makes quarantining away from work five days a less devastating hole from which to claw my way out. It’s the light at the end of that COVID recovery slope.
It’s the 21st night of September and if you don’t immediately bust out singing Earth Wind and Fire’s September when you hear those words, are we even friends??
Just prior to giving birth to my second child I distinctly remember reflecting that those moments early in my labor were the last moments we would share as a family of three. I had no idea how bringing home a new life would completely alter the dynamic my husband, toddler, and I had created, but I felt that with this incredible addition there also would come an ending of sorts.
Nearly seventeen years after my second baby completed our family, we loaded up our Honda with most of our firstborn‘s belongings, prepared for the six-hour trip to his dorm at the University. My husband, doubter of the Tetris acumen I developed in the late-1990s, questioned whether all our kid’s stuff would fit in our mid-size SUV. He questioned it to the point of a friendly little cash wager (which, OK, fine we share a bank account so it’s not like I actually won $50 but I TOTALLY won the $50!).
His dorm at The U is 299 miles from our home, 299 being an important distinction for me as being definitely not 300 miles from home, but only 299. It’s my mama’s brain version of the game every retailer at which you’ve ever shopped plays with our collective minds: Oh, this sweater costs $54.99, such a bargain at that, no? This sweater won’t set you back a whole $55, no, no. It’s perfectly priced for you at a mere $54.99. You see where I’m going with this. My kid now lives 299 miles from home.
My baby posted this on his Instagram story the night prior to his bro’s departure and it nearly wrecked me.
Standing outside my big kid’s bedroom door the morning of, eavesdropping on my sons’ final goodbye and doing everything within my power to mind my own damn business, which I DID, mind my own damn business that is, nearly wrecked me.
Watching my big kid hug our idiot dog goodbye nearly wrecked me as did watching him take the deepest of deep breaths as he took his last look around the house before closing the door one last time. Ooof, Monday morning was a tough one.
Tuesday was worse. Monday night’s dreadfully inadequate period of sleep (Hilton, your pillows were bricks that only 50% of Room 517’s inhabitants enjoyed) left me more fragile than I’d like to leave on display. Early Tuesday, we picked up a few last minute items for my son’s dorm, then delivered and set them up in his room. Too soon it was time for the REALLY big goodbye–the goodbye parenting websites write so achingly beautifully about, the goodbye over which flowery memes using cute fonts are created and shared across parents-of-kids-going-to-college pages, and you know what? It’s every bit the beautiful and terrible moment you’re told to expect.
I made our kid walk us out via the front lobby of his dorm, ostensibly to give us a tour of the building, but more so that my kid wouldn’t have to hide from his new roommate in horrified embarrassment at his mom’s inevitable fit of tears. Everyone–everyone–knows I’m a cryer. Whether I’m happy, angry even, touched, flattered, when I’m witness to the tears of another person, and especially when I’m this once-in-a-lifetime jumble of undefinable emotions, I fully expect to cry. A total game-day decision it was exiting out the front door, but we made our leave, to me surprisingly quickly, leaving no room for maudlin in the dormitory lobby. Hug-hug, hug-hug, we love you, we’re proud of you, this is gonna be so great, blah, blah, blah, and we turned our backs.
His dorm is near the parking structure and we could not reach our car fast enough for me. I’m not sure, but I am guessing to passersby I looked like a participant in one of those weird race-walking events. I couldn’t get out of there fast enough. What my mama heart wanted was to turn around and go back, which is exactly the opposite of how this goes. So we took the elevator up, not back, returning to our now-empty car parked atop six floors. I wanted to peel out of there, but my husband, thank stars, encouraged me (us) to take a moment before zipping off, suggesting maybe we just sit and breathe and wait and talk/not talk for a few minutes. I don’t know, I have no idea which words he actually used. I just know that I cried while I envisioned every worst case scenario event, big and small, coming at me/him at once and at a hundred million miles per hour. I’d never felt so scared for my child in his life–and let’s be honest here, he’s had some pretty rare and scary things happen to him in his eighteen short years.
I took this photo of his dorm from the top of the structure. I don’t think my husband was truly worried for my sanity or physical safety, but when I walked to the edge of the structure, he did kinda give me the, “What are you doing???” tone. It’s the stupidest non-photo photo ever, but this is where my not-baby lives now and at that moment, I needed a picture of it. I didn’t say it made sense!
Because even when it’s the absolute right thing for your kid, make no mistake people, it is hard as hell to turn your back and hop onto that entrance ramp to I-94 East. My child gives little away emotionally, but I know he was feeling some kind of way he’ll never share with me. Maybe college freshmen have their own version of the big parental goodbye memes and blog posts? I kinda doubt that actually, but I do believe this goodbye represented a significant, recognition-worthy shift for him too.
A few days later and he’s fully engrossed in Welcome Week activities, Snapchatting the squirrel on the field at the football game, sharing buckets of cookies at the State Fair (thanks for the pro-tip, Cousin Lauren, whom I love to the ends of the earth). Heck, he’s even texted me about laundry (and a lost debit card. . .). He did laundry, you guys!! He still needs his mama, but he is figuring it out. Scratch that–he still needs his mama, AND he is figuring it out. I read something on one of The U’s social media feeds last Thursday, and went downstairs to ask my kid about how his day was. At The U. 299 miles from home. . . Weird how stuff hits you. I am figuring it out too.
I miss my big kid. I’m immensely proud of him for getting there and while I believe he is where he is meant to be right now, that doesn’t mean I don’t miss him being here. I realized in making dinner that first night back, that I probably wouldn’t need to continue to make double rice portions, and probably could buy only one gallon of milk a week now. It’s weird how stuff like doing less laundry sneaks up on you to punch you in the gut.
I revisited some of the “words of wisdom” (read wisdom with heavy tone. . .) I wrote to my son at graduation and it turns out I mean them just as much now as I did then: 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.
We’re back to being a family of three here (not really but you know what I mean). It’s gonna take some getting used to. Maybe collecting my $50 will be a good start to that adjustment, huh?
Is what I said to my husband just now after sifting through the day’s mail.
Actually what I said was, “I’m gonna go sit outside til my head doesn’t feel like it’ll fucking explode and I might get a little drunk, not gonna lie.” But obviously that is too cumbersome a blog post title.
My delicious Blue Crush is already (and quickly) half empty. I can’t possibly refer to it or my attitude as can half full after today’s not- very-special delivery.
More BS from the insurer representing my husband’s employer arrived in today’s mail. He’s being sent for an independent evaluation of one of his many mangled body parts. Apparently having his ear and part of his face traumatically removed from his skull did not provide compelling evidence as being causative for the disability he has incurred, so the insurer has summoned an outside evaluator apart from my husband’s sizable medical team.
I began this blog writing about my experience as a confused, saddened parent of a child newly diagnosed with a progressive neuromuscular disease. Writing provided a desperately needed outlet for the fears and crush of emotions that diagnosis created. Never would or could I have imagined that then-11-year-old heading off to a Big Ten University. You’d think THAT would make a super great and timely post one week before launch, wouldn’t ya?
Instead it’s me feeling manipulated and cheated by the insurance company for my other disabled family member. AGAIN. STILL. It’s supremely shitty to continue to force disabled people (and trust me, my child would have chosen MD no more than my husband would’ve chosen his buddy run him under that truck) to PROVE their disabilities. It’s cruel and sadistic and just a part of everyday fucking life for us.
Respectfully, I ask: Are. You. Fucking. Kidding. Me?
(OK, perhaps not too respectfully. Fine.)
In case you wondered, the can is now empty. Not half empty: drained. The Blue Crush is crushed. Cheers to the maladaptive coping mechanism I needed to continue fighting the good fight!
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.
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.
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.
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.
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?
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!
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.
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.
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.