Top Fan

Why is everything a contest these days? Why do even the most non-competitive of life activities (enjoying music and live shows, for example) have social media rankings attached?

I received a Facebook notification yesterday.

Well, obviously. I mean, have you been paying attention here, people?

But it’s silly, right? There is no prize, no greater good for society in being so recognized by a social media platform, I assume for the number of times some algorithm has calculated I’ve included the text “Barenaked Ladies” in my comments or “liked” a status. I cracked wise about my “badge” on my FB page (because who wants a badge when a sash is still on my list of must-haves?) but really? This does not have to be a competitive sport. And if it must, I don’t think I want to play. I just want to keep enjoying my concentrated hobby in my car, all by myself, competing with no one and nothing but which song makes me feel happiest. Clearly, I’m not meant for the Major Leagues.

It’s Opening Day!! This IS major league!

I digress. But the Brewers are undefeated, you guys. It was a good day at the ballpark. It’s always a good day at the ballpark.

You know what would be a worthwhile recognition? Acknowledging people whose real life accomplishments made lives better.  To recognize acts of goodness and kindness and generosity and give those individuals gold stars or top fan badges.  So in the spirit of not-competitive do-gooding (good-doing?), I present not-awards, and since Facebook cornered the market on “badges,” from me, you get a sash.

And The Sash Goes To. . .

I’m a super top fan of these people, who, early in the process, lent their financial support to our MDA Muscle Walk team and/or volunteered to show up on walk day.  Much gratitude and love to Allison Schley, Jenna Stoll, Rhonda and Mark Weir, Laurie Stilin, Sue Doornek, and my incredible friend Sally Warkaske.  Wanna be on my Muscle Walk Top Fan list?  Join or donate to Team Greater Than Gravity by clicking here.

We Rate Dogs, a Twitter feed (@dog_rates) that rates dogs and their antics/gifts on a scale of 1-10 should get a sash for their sweet, sunshine showcase of mutts in their noble canine deeds.  Many dogs get rated 11/10 or 13/10, which I consider simply marvelous math.

Lin-Manuel Miranda (@Lin_Manuel) deserves a galaxy of gold stars for his Gmorning, Gnight Twitter pep talks and pretty much everything else he’s ever said, written, sung, or rapped.  I suck at Twitter. It would be best if I deactivated my whole Twitter account entirely, but We Rate Dogs and L-MM’s genius are enough to string me along.  I just need to shut my mouth there and stay the hell out of political threads.  The rabbit hole is deep and dangerous there, y’all.

My final sash du jour goes to a Milwaukee firefighter. Last weekend, my little guy and I were shopping, and I noticed a familiar face in the shoe section. I approached him, inquiring if was an MFD firefighter, and his response was, “Yes, and I was at your house a few weeks ago.” He was one of the crew dispatched to our home after the Curious Incident of the Ice at the Bus Stop. He asked after my son, and wished him well. I thanked him for providing calm reassurance during a distinctly not calm time. I didn’t want to bother him as he enjoyed his Saturday, so I tried to split pretty quickly, but he recognized having met me!! And that never happens–no one ever remembers me, so extra gold star.

Liking or appreciating something should not be a competitive event, but it’s not a bad idea to point out good deeds and good works.  Rewarding me for being a fan isn’t going to make me a more rabid enthusiastic singer-alonger.  But maybe someone being called out for just doing something nice might encourage more of that just something nice.  A girl can hope anyway.

I still wouldn’t mind having my own sash though.

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Channeling My Inner Shirley MacLaine

Presenting a stupid-long blog post, a combination of two drafts and one new tale, all subtitled with Hamilton song titles, because if I’m focused on something, you all have to ride it out with me.  That’s how this little game is played here at Greater Than Gravity, friends.

Helpless

Our family is fortunate I carry “good” health insurance, so we don’t use the emergency medical department for an ear infection or tickle in my kids’ throats.

I know my son. When he cries out in pain, categorizing his pain as an “8,” you or I would find that equivalent measure at about 74 on a scale of 0-10.

I don’t screw around with calling 911. I’ve dialed twice before in my lifetime: once because my house was on fire–which was one hell of a rude awakening BTW; the second call was placed when I saw a man perched at the highest point of the wrong side of the Hoan Bridge as I drove home from work one afternoon.  When my son was screaming and crying in pain after having fallen on the ice, it was no joke.

Monday evening he called me from the bus stop, saying he couldn’t get on the second bus, the second of two mass transit buses he takes to and from school.  I didn’t really get it.  “Did you miss your bus?” I asked.  He replied that no, he could have caught it, but couldn’t get on.  Ohhhh-kay. . .  So my husband drove the 30 or so blocks to retrieve him, and when they arrived back home, it was clear what he meant about not being able to get on the bus.  He could not walk.

Nor could he sit or stand or do anything without howling or whimpering. His pain was unlike anything I’d seen him endure before, worse, he said, than when he broke his collarbone.  I quote: “This is the worst pain I’ve ever had in my life.”  When I say his pain thresholds are beyond the natural order of things, I say that without a hint of hyperbole.  The kid’s tolerance for pain is, well, it’s just not right.  After a few minutes of should-we-or-shouldn’t-we, we did.  I called 911. You never want to have to call 911.

The Fire Department EMTs arrived, assessed the boy, and called an ambulance for us.  Some degree of agony was alleviated by his being placed on his back, and I was glad he’d be transported in that position.  By this time, the pasta side dish had boiled over and baked onto the stovetop (good thing there were firefighters in the house!)–hey, I was a little distracted!  I collected myself, a phone charger and cord, and off we went, a crime scene of dinner components, half-cooked, half-sliced, half-assembled across the kitchen in my wake.

And there we sat.  Despite arriving via ambulance, there were no ER bays available, so they sent us back to triage, where we waited a full 1:45 to be seen.  I know he’s big, and I know he’s not a baby or toddler, but goddammit, when other parents whose kids have come and gone since we arrived are stopping to wish us well because they can see how badly he’s hurting and how upset he is???  When he’s leaning over my husband, hanging on for dear life openly crying?  My kid needs help.  Does no one see this?

He began to question the nurses as they bypassed him, calling out the names of other patients.  Why?  Why won’t you take me?  What is taking you so long?  Can you see how bad it hurts??  And parents, it would take a special degree of stoicism not to crumble to see your son’s pleas for help go ignored.

I tried not to lose my shit, because being belligerent rarely helps, but after 1:44 (and I know the time exactly, because we checked in at precisely 6:00 PM), I approached the desk again.  My child had been up and down, trying to find a comfortable position, relatively speaking of course, for nearly two hours.  When I finally channeled my inner Shirley MacLaine a la Terms of Endearment (GIVE MY DAUGHTER THE SHOT! GET MY SON A BED!), a bed magically appeared within two minutes.  *Thank you very much*  And no, I did not shout.  I was barely a whisper.

His coccyx is not broken, so say the x-rays taken while he trembled the whole time.  He was discharged at last shortly before 10:00 PM.  The ED doc (apparently it’s not ER anymore, it’s an emergency department, not an emergency room, fine) gave him one pain pill, which mercifully allowed us to get him into the car, home, and up to his bedroom, and a note to return to school Wednesday.  I’m real swear-y today, so forgive me, but are you fucking kidding me??  He cannot stand.  He cannot sit.  He cannot walk without 100% assistance.  This wasn’t a little owie to kiss and cover with a Scooby-Doo band-aid and chase with a couple ibuprofen.  All I’m saying publicly is that I’m so looking forward to my patient visit satisfaction survey.

Not only is he in tremendous pain still, but he’s also worried now about missing class and making up the work he’s missed.  Adolescence is hard enough for him, for any adolescent really, but to be laid up in the middle of things does not fit into his class schedule.  I reminded him I’d be able to email his teachers, saying as I always do, that we’ll figure it out.  We will.  His teachers have been terrific in response.  Lucky to be Huskies, as they say at RRHS.  My friend Nikki immediately sent a fruit bouquet for him, and your spirits can’t help but be lifted by a pineapple wedge emoji! 


I drafted a post last week I’m including below because I never got around to finishing it.  As you’ll read, I was sharing the immense pride I felt at my boy’s fortitude and brute strength in the face of this strength-stealing disease.  You don’t ever want your kid to have to consider this, but for mine?  It’s the lens through which he views the future.

(Maybe now is when you fetch a beverage, some type of refreshment?  I know.  It’s getting long here today, so you may need an intermission from today’s ramble.)

Dear Theodosia/My Shot

“Pride is not the word I’m looking for, there is so much more inside me now”

–Dear Theodosia, from the Hamilton Original Broadway Cast soundtrack

It’s a beautiful little serenade sung by two new fathers overwhelmed with the love they feel for their newborns.  I teared up the first time I’d heard it (as well as the second, fiftieth, six hundred twenty-third. . .).  The song perfectly captures the tenderness and awe first-time parents experience, knowing they’ll do whatever it takes to make the world safe and sound for them, if I may again steal from Lin-Manuel Miranda.

I was an athlete in high school.  I lettered in track and field all four years, and I was in cheer.  My next-door neighbor was one of my physical education teachers, yet still, I struggled in physical education classes.  Sports and leisure activities should have come more easily for me, but they did not, instead causing terrific frustration and angst.

Now it’s my big kid’s turn.  As part of his Section 504 plan, it was decided that we would meet with his physical education teacher prior to the start of the new semester, and that we did back in December.  My husband, ever the optimist to my dark cloud cover of an outlook, felt it went great, and he was confident our kid would do well.

Gym teacher:  Can he do a push-up?

Me: No

Husband: I think he could, he’ll try anyway.

Gym teacher:  Can he jog?

Me: No

Husband: He can run, not too far and not too fast, but he can try for sure.

Me: He will try anything you ask him to.  He will NEVER ask for help, and he will NEVER admit he wants a break, even when he really needs it.

Gym teacher: If it’s required, he can do some of his testing privately with me.  He is not the only student here who has a physical disability, and we do accommodate so that it won’t affect his grades.

You get the idea.  I appreciated the teacher’s time willingness to give my kid his shot. Even able-bodied kids struggle in PE, so I was sure it was gonna be harder for him than it might be for the average kid.

Last week, big kid comes home explaining how he is always tired in his English class, which immediately follows first block phy ed.  He reports that his running intervals have increased, and that tires him out.  I guess they run-walk-run-walk-run in some type of ladder system designed to increase endurance.  I did Couch-to-5K; I get the program.  I suggest to him that his 504 allows him to take a break when he needs it, that his teacher has been made aware of his physical status, and will allow him to time himself out, or rest for longer than the others if he asks.

In response he says to me that he’s just not going to let MD get the better of him, that he’s not going to let it keep him down.

I don’t even have time to turn around or look away before my eyes mist up again.  Pride is not the word I’m looking for (Thanks again, L-MM).

I feel immeasurably proud of his fortitude and attitude, but I simultaneously worry that the denial is strong in that one.  I don’t expect him to wear a medical diagnosis on his sleeve, or to lead with it in every single aspect of his life.  I do however wish for him a realistic view, not an entitled view, or a view that means he begs off and takes the easy road.  No.  I want him to understand challenge, and the value of the effort + heart + hard work = success equation.  I just don’t want him to take the path of most resistance simply because he wishes not to disclose his medical condition.  But I sure don’t get to pick.

My son now has to sign consent forms allowing ME access to his medical records.  Seriously, who thought this was a sound decision for teenagers who don’t consistently remember even to comb their hair?  My point is that I don’t walk that proverbial mile in his shoes, I don’t decide who gets to know what details about his life, and we don’t talk much about MD these days at our house.  I don’t know what he’s feeling all the time.  He won’t do what I would choose to do, or what I think I would choose to do anyway.

He is not letting muscular dystrophy define him.  To most parents, I bet that seems like a monster victory.  For many reasons, it is.  It’s a scary world our youth face.  Some days hope seems in short supply, but not for him, not last week.


Who Lives, Who Dies, Who Tells Your Story

It took a couple centuries for someone to tell Alexander Hamilton’s story.  Thank you for being here with me as I record our story with a bit more immediacy than Hamilton’s.  Today our history isn’t pretty or funny or quirky.  It’s just an I can’t sleep, beat-up mom doing her best for her kid.  When he was freaking out in the ED, I held his hands and told him he’s braver and tougher than most kids he knew, braver than even he himself imagined.  That he could endure anything.  He has.  And he will.

As both his father and I coaxed him into his PJ pants last night, he said, “So now I have an idea what it’s going to be like when I get older, when I can’t move because of muscular dystrophy.” Jesus.

This is his point of reference, and every so often we’re reminded.

Be grateful every damn day.  If you get up and out of bed, you’ve won.  Don’t ever forget it.

 

Wings

Wheels, actually.

Now that my son has mastered the County Transit System (what you would think of as a city bus) to motor to and from school, he’s taking his show on the road.  He SET AN ALARM on a Saturday morning, showered, stuffed in some breakfast, and slushed off to the first bus stop.  He’s not sure where he’s going exactly, but he’s flying solo!  His general destination is a popular retail and dining hub across town.

He began his campaign a week or so ago, and while every ounce of my motherly being was parked at “no,” he made a compelling case for “yes.”  Before I knew it, it was less my husband and me deciding whether or not we’d “let” him, and more us merely going along with his plan.  I know for a fact I never actually uttered “yes.”

He’s a teenager. He’s supposed to pursue a life outside our home, and we are supposed to let him. But we live in the city, not the idyllic ‘burbs, and much as I hate to admit it, I worry about his safety. He’s a good kid, a bit of a naif for sure, but his intentions are pure, motivated by nothing more than wanting to explore on his terms, and maybe eat too much garbage fast food at one of the many options in the area.  Just prior to his departure, I ask how much money he’s got in his wallet.

T: “$170”

Me: “Oh, hell no.”

T: “Too much?”

Me: (in my head) Sweet baby jaysus god, you are gonna get rolled by some bad dude, or some store manager is gonna see a dorky-looking teenager with a a wad of cash sporting a string backpack, assume the worst of you, you’re going to be accused of then arrested for nothing of your own doing, good thing your dad and I are home today so we can retrieve you from the police station, you’re gonna drop cash on the floor as you fumble through your wallet trying to pay for something and then someone’s gonna lie in wait for you and jump you as you exit, and you probably don’t even have my cell phone number memorized anymore, how do you have this much cash and can I borrow a few bucks? and, and, and. . .

Me: (out loud) “Yeah, too much.  Dial it back by at least $100, maybe more, m’kay?”

And off he went.

The modern marvel of Apple iPhone’s Find Friends app offers relief.  I straight-up tell him I’m stalking/not stalking him, and he’s OK with it.  Not like he has a choice in that matter, but his whereabouts aren’t unknown to me, well, his phone’s whereabouts aren’t unknown to me anyway. I watch too many crime dramas and read too many mysteries featuring serial killers, so, duh, I know any would-be assailants would toss his phone. Before long though, he texted his first update: “Apparently Uncle Bob and Auntie Anne are heading south on 76th Street, and they saw me just as I was getting on the southbound bus.”

I don’t believe winged angels hover over our shoulders, but I do believe there are forces at play around us over which we have no control.  I swear I’ve periodically seen a reflection of light where there should be neither light nor reflection when I open our side door.  In my over-active imagination, our once-elderly, now-deceased next door neighbor Irene visits in what looks to be the form of an orange-tinted aura.  Yep, sounds insane, but that blob of light is something I saw with regularity, but can’t explain. Sorry, this should be an entirely separate blog post. Ahem.

The universe has its inexplicable plan, and sometimes it places you exactly where you are meant to be.  In this case, it’s placed my brother-in-law at that intersection, and made Bob pay mind to some long-haired kid at the bus shelter on a random Saturday.  Thank you, universe.

I’d gotten updates from the music store (ooooh, that six-string bass is kickass), the sporting goods store (nothing a little Seattle Seahawks stocking cap can’t cure–Seahawks, really?), food court (Rocky Rococo’s for lunch), and of course, Kopps Frozen Custard, a local institution of deliciousness, to cap it off. It would seem his day had progressed just as he thought it should, as I’d hoped it would be for him.

That doesn’t mean I’m at ease with his newfound wings–you never don’t worry.  Even when he texted saying he boarded a bus which changed its route after he hopped on, I was cool that it was probably gonna be OK.  He’s a modern-day Magellan with the benefit of a brainful of maps Rand-McNally themselves would envy.  And an iPhone.

Me?  I spent part of my afternoon shopping for my dog’s girlfriend’s birthday party.  My husband recalled Petco welcomes your leashed pet while you shop, so he thought it’d be grand to bring Caleb along.  This is my life, you guys. We can never go back.  I did however write a glowing review of our Petco experience via the online survey they sent.  Did anyone provide excellent service?  Yes, everyone who didn’t judge me when my dog peed on the merchandise was excellent.  Pro tip: don’t buy anything kept on the bottom shelves.

Um, Hi

Being on hiatus sounds fancy, doesn’t it?  So academic.  Go on with your bad self, actin’ all fancy and on hiatus and stuff. I hadn’t felt that pull, that need to write here since I declared last month that it was time to take a break.  I’ve been a little emo, if ya know what I mean, and not the up, energetic kind of emo–the crawl under the covers, binge watch TV, and tell anyone who asks you’re just fine, just happy to sleep late kind.  Since I stepped away from the blog one month back, I’ve been bunny-hopping around the yawn of the rabbit hole.

I finally nailed my six-word memoir, writing tells me how I feel, then stopped writing.  Smart.  I stopped at what I felt was a pivotal moment: my kid was entitled to a certain expectation of privacy.  He is.  But I’m  also entitled, entitled to a certain expectation of not losing my mind.

While on break, I read a ton, discovered podcasts, celebrated nailing every word to “My Shot” from Hamilton (Lin-Manuel Miranda, you are a genius), and I wrote a lot of stuff with zero intent of hitting publish.  The writing wasn’t good, nor did it check the compartmentalizing brain box for “writing it down-getting it out.”  Blah most succinctly captures the fun I’ve been to be around.

But if I had been blogging this past month, I’d have chatted about my new television BFF, Midge Maisel.  I am in love with The Marvelous Mrs. Maisel, starring Rachel Brosnahan as a ’50s-era housewife, living the Upper West Side life.  Midge’s husband was a schmuck whose indiscretion led to her on-mic rant on an underground club stage which led to her double life as a comedienne.  Her timing is surgically precise, off-the-cuff comic genius at its finest during a time women were strictly barred from the boys’ club.  She’ll never win a mother of the year contest, but MAN, do ya root for her!  I’d D.I.E. to play dress-up in her wardrobe, just once.  Those dresses!  The hats!!

If I had overshared my days and nights with you here as has been my pattern, I’d have shared with you this grocery store telephone exchange with my oh-so-attentive husband. 

I’d have told you my Yellowstone National Park otter story.  You have to read this in “John Cleese as hushed/whispery narrator of a nature documentary” tone until the end, where my tone totally prevails:  So they’re highlighting winter animals in the park, then of course, snow melts, the seasons change, and the river otters are seen frolicking in the spring mountain runoff.  We see that the male otter is looking to git a little somethin’ somethin’ from his gal pal because it’s his spring awakening, though the female’s a little meh about his advances. Enter John Cleese:  The male ottah (because he’s British)  attempts to woo the female ottah, but the female seems a bit distracted.  Me: Yeah, you know why she’s distracted?  Because she’s thinkin’ she’s gotta get groceries, make dinner, clean the house, do the laundry. . .  My husband:  Silently stares at me for a second, then admits it was pretty funny.  He didn’t admit I was accurate, but I’m sure it was implied anyway and I’ll take the victory.  No Mrs. Maisel myself, but my timing here?  Impeccable.

I’d have told you about how my freshman (and about 1/4 of his classmates) positively crushed their first semester grades.  There’s about a 98-way tie for valedictorian so far, and that is not typical Wendy exaggeration, but the incredible effort of these hard-working, high-achieving teens.  The child comes home, tends to his schoolwork promptly and without prodding.  If he coasted the rest of his years (and he had sure as heck better NOT), I’d still be knocked out by grade nine, semester one.

I’d have made mention of a little professional revelation I had that suggested to me it might be time to hang it up. When you’re ineffective, be it by circumstances external or within, you’re ineffective. Even I am tired of hearing my presentations and opinions, so too I would guess are the bulk of my colleagues. The beauty (beauty?) lies in knowing it before having to be told. The “quit before they fire me” school of thought. No, I’m not quitting or likely to be terminated, but I am evaluating my state of affairs anyway.

I’d have told you about my “little” kid’s first basketball game, which, in a real nail-biter, they took 27-1.  And yeah, everyone cheered for the kid who sunk that free throw.  My child is the one with arms like a spider monkey’s.

I’d have written about having seen The Book of Mormon, and the especially offended young woman who steamed through the lobby shouting “Sacrilege!  It was sacrilege!”  Ummm. . .  you bought the ticket with no clue that the dudes who created South Park wrote the libretto?  Were you expecting a fun little evening actually learning about the missionary work of the Church of Jesus Christ of Latter Day Saints?  Really???  I have an absolutely profane sense of humor, and even I blushed at some of the language and imagery.  Oh sure, I laughed until my face hurt because it’s wrong in all the right ways/right in all the wrong ways (and frankly a little terrifying in some of the truths which underlie the basis for the musical).  A super badass friend of mine is an ex-Mormon, and I respect and admire her all the more for her strength in having left it, but not Utah.  That’s her story to tell though, not mine. 

I’d have written a new mystery á la Nancy Drew or The Hardy Boys with the working title The Mysterious Case of the Broken Staircase Spindle. It wasn’t me and it wasn’t my husband, and the dog doesn’t go downstairs. . . so, yeah, SO WEIRD that nobody broke it.

I’d have written about the kick of having discovered Snapchat’s ridiculous filters. Because while I LOVE my hair purple and my eyes blue, there are limits to the type of look a 50-something professional woman should want to cultivate in real life.  I don’t actually share snaps (am I saying that correctly, kids?), so if I die and someone goes through my phone’s saved photo roll, I’ll be judged for eternity as someone who thinks a little too highly of her self-portraits.  

It’s our family’s four-year MD anniversary, or crap-iversary if you’re my friend Cindy, who reaches out every year at this time with some wise or comforting words.  Or cake.  Four years. 

January 21, 201–still the day for me that began after. 

Four years of wondering if his outcome would’ve been different had we waited even one millisecond longer to have a baby.  Four years of tears striking at the most unexpected (and those you can totally predict) times.  Four years of gearing up and freaking straight the hell out at the MDA Muscle Walk.  Four years of meetings with school administrators, counselors, occupational therapists, physical therapists, and teachers.  Four years of friends and strangers putting their best, kindest, most generous sides forward.  Four years of reluctantly raising funds for my kid and others with muscular dystrophy, to advance the science as well as social opportunities for kids with disabilities.  Four years of dreams dashed, then reconfigured and revised. 

Four years of writing these random musings.  I need this place to deposit the bad stuff in my head to lighten the load, to be me. Writing tells me how I feel. I want to feel more up–maybe I can write myself a happy ending.

 

You May Take The Floor

When you’re the problem solver for a good lot of people, those individuals expect performance.  The baseline expectation is that you’ll deliver, and historically, pretty much every time, I’ve delivered.  I suffer no delusions of self-importance; don’t misunderstand me–I know I’m not indispensable.  But when you ask me a question, I respond promptly.  When you ask me to get or bring you a thing, I tend to deliver in a timely manner, said item held out for your inspection.

Right now though, I’m not up to fixing mine or anyone else’s problems.  I want to marinate in an isolation ward. A mostly cheery, albeit smartass and bitingly sarcastic nature, is my norm though, right?

Here’s what I would like to share: success.  My son, my boy with this crap muscle disease, who’s becoming more young man than boy by the minute, help me!, competed in a team event.  He hasn’t engaged in a physical contest of any sort since around first grade probably, I honestly don’t even remember anymore.  For the past several months, he and his “teammates” under the tutelage of their band director and a cool dude experienced percussionist to assist-coach, have been rehearsing their behinds off for the district drumline competition.

Drumline is not for the faint of heart, yo, and the pageantry and air of competition made for a memorable, oh heck–historical, Saturday.  The two perennial faves did take first and second, but to see the excitement on our kids’ faces when they learned they made the finals in third place was more than I could have dreamed.  They scored the first music competition trophy in school history, and I couldn’t be more pleased for and proud of them.

They worked for months!  After school rehearsals a couple nights per week, and 4-hour mini-camps on off days and Saturdays, to learn cadences and choreography, and then rehearse their pieces while moving their parts.  My kid was beyond exhausted after rehearsals–trashed–but he persevered.  After Saturday’s first round of performances, scores were tallied, and the four finalists were named.  It was a moment.  As I often do, I marked this moment with tears.  Poor Cat!  My friend whose children attend two schools–older daughter in the top team and son, my kid’s close friend, had to deal with me crying in relief, disbelief, and joy.  Never once, since that horrible January day, if you’d asked, would I have imagined my kid participating in a physical contest such as this.  You’re thinking drumline is musical, and I must be confused, but surely it’s physical.  And it’s magic.

Drumline captain, are you ready?  You may take the floor.

You don’t have to, but you can watch their first round performance by clicking here. I’ll watch another time or two to remind myself that even when I want to fly solo, good things happen when you’ve got a wingman or twenty.

Stay tuned, friends–I’ll be back.

My Kind of Town: A Tale of Two Marathons

She did it!

img_2381

She inspires me too! Sign by her friend Heidi, who biked and Ubered the route to cheer Lauren to the finish.

My niece Lauren conquered the Chicago Marathon yesterday.  Not that there would have been one shred of disappointment otherwise, but she ran every, single, agonizing step in her 26.2 yesterday.  Every.  Single.  Step.  Agonizing is my word, not hers.  That girl smiled every step of the way, and I swear on all that is good and true in this world, her makeup didn’t even run.  Not even after pounding out the first eleven or so miles in the pouring rain.

Until several months ago, Lauren wasn’t a runner.  She was an incredibly fit, young twenty-something graduate student (speech-language pathologist in the making–so, so proud!), but not a runner.  Like not even hahahaha, I’m a runner.  But Lauren committed to running the Chicago Marathon as a member of Team Momentum, the Muscular Dystrophy Association’s support and fund-raising team, and suddenly last winter she sprung it on us that she’d committed to a full-on 26.2.

She sent me this photo early yesterday morning, and I couldn’t even talk.  My son and I were ready to hop the Hiawatha Line to Chicago’s Union Station to be part of marathon madness, and when I saw the photo, I was grateful for waterproof mascara.  I couldn’t talk.  My husband was all, “What’s wrong, what’s wrong???” until I showed him the photo.  And then I shared it with the world on social media, because goodness should be shared.

Ninety minutes later, still seated on the train, my boy and I spied runners crossing over the Chicago River from Union Station, and because I am a freak about time, I felt like if we didn’t get out there RIGHT NOW, we would miss Lauren.  It took about forty minutes, in a not-light kind of rain, to find my sister- and brother-in-law in the throng.  And let me tell you what an inspiring, encouraging throng it was: positive energy flowed from every cowbell-shaking, sign-carrying, hollering-for-anyone-whose-name-or-team-name-could-be-read-from-their-jerseys sideliner as the marathoners passed by.  The runners smiled, waved, cheered, thumbs-upped back to their adoring fans.  If you weren’t moved by the buzz, even in the deluge, your heart must be made of stone.

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My kind of humor

We first spotted Lauren at the 13-mile marker, the halfway point.  She ran over to us, hugged us all–enormous grin the whole while–and kept hammering.  I cried.  We spotted her at mile 17.  I cried.  We spotted her at mile 20, still radiant, and I cried.

When she began to pick up speed at mile 25, I cried.  Afterward, Lauren said that when she saw the one mile to go marker, she just picked it up and, I believe her word was sprinted to the finish.  I can’t disagree.  Look at her!  Smiling still, waving, taking it all in, even faster than the 25 miles before it.

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After her thermal blanket and medal were around her shoulders and neck, we hiked another mile north to the MDA’s race team headquarters, a snazzy, downtown workout facility.  My sis- and bro-in-law joked that we couldn’t possibly complain about our own aching backs, knees, ankles after, you know, Lauren had COMPLETED A MARATHON, but I was beat.  They were beat.  My son was barely hanging on.  BEAT.  As we trekked that last mile, (well, technically my boy and I still had another mile-plus walk back to the train station), my kid admitted finally that he needed a break.  And snacks.

See, the whole reason we’ve embraced and been embraced by the MDA is because my son has muscular dystrophy, and while Lauren killed 26.2, my boy crushed his own 10.4 miles yesterday.  And yeah, I cried. It was the theme of the day, after all.  The boy complained not once, not ever, but did agree that maybe hailing an Uber from mile marker 20 to mile marker 25 would “be nice.”  My son gets this posture when he’s fatigued, and he held that position for much of his day yesterday.  But you’d never have known how exhausted he was by speaking with him.  My son isn’t one with the social gifts, and he’s fourteen, so not what you’d call “chatty,” ahem, but he smiled for the camera as his weepy mother demanded.  Well, sorta.

So the moral of the story is this:  As Lauren demonstrated, you can do just about anything you set your mind to.  You can change the world for a kid with a horrible muscle disease, and lead by an example of determination and goodness.  You can reduce your aunt to a blubbering mess repeatedly, and she’ll only love you more for it.

We usually spend our days in Chicago looking up at its marvelous architecture, but yesterday was spent looking ahead, and the view was magnificent.

Chicago, you really are my kind of town.

So You’re Aware

September 30 is Limb-Girdle Muscular Dystrophy Awareness Day.  Now you’re aware.

Because we haven’t opened our son up for a muscle biopsy, a diagnosis of LGMD is merely a hypothesis.  It’s consistent with his grandfather’s diagnosis, but its most frequently occurring subtypes–there are more than thirty–did not show up in a DNA screen when our son was first diagnosed.  Limb-Girdle MD is the front-runner for official diagnosis.  When we became a member of the MD “family,” (yes, quotes around family, because you know I wish my son had other relatives, like maybe MENSA or the MLB or any of the thousands of organizations NOT borne of medical necessity) I was very much in favor of medical testing in any or all of its forms.

I wanted to know the name of the bastard attacking my son.  I wanted to look it in the eye, stare that monster down.  I wanted to know everything so I could arm myself with data, facts, and the predictive information every mama bear needs to clutch to.

Instead, my husband dug in his heels.  Dug in passively, anyway, he’s not so much the stand taker than I am.  He did not want or need specific data points to be my kid’s dad.  He plodded along, blissfully unaware (my phrase, not his), just being the same ol’ dad guy he’d always been.  He did not support a surgical biopsy.  The diagnosis would not change anything for our son, he believed, all it would do is provide a place to hang our hats.  It’s not the only point on which we disagree(d), but elective surgery is kind of a big deal, and not a 50% kind of deal, you know?

Over time, together WE decided that if and when our son wanted a diagnosis, we’d support him in that, and by “support,” of course I mean pay for the procedure if that time falls when he’s still under our insurance.  It’s a day surgery.  We came to agreement that if our son got a point where his curiosity about his own health status or medical or treatment necessity came into play, the biopsy would serve its purpose then.  For him.

My boy was eleven when diagnosed; it’s hard to believe he’ll be fifteen in a few weeks.  So much has changed, but not his diagnosis.

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This photo does not belong to me, nor does it likely belong to whomever swiped it from NBC, but you see where I’m going with it, right?

Today is LGMD Awareness Day.  Click here to learn about LGMD, to heighten your awareness, as it were.  It seemed absurd to me that an awareness day was a thing back in what I now think of as my “early days” of the MD ride.  But as I find myself staring down high school physical education class with abject terror for my son, I would love for his gym teacher to be aware, you bet your booty.

My niece is running the Chicago Marathon next Sunday, a member of Team Momentum, the Muscular Dystrophy Association‘s fund raising and awareness squad.  Y’all, the girl is running a marathon for my boy, for her camper, for her grandfather.   She’s a remarkable young woman, whose bravery and commitment brings me to tears every time I think about it.  Go, Lauren!  We love you.  Aaaaand, yeah, I’ve got the tears. . .

Dyssynchronous

Dyssynchronous is a word–incorrect-looking and cumbersome sequence of letters though it may be, it’s as close a word as I’ve found to describe the out-of-timeness I’m experiencing.

As I overshared previously, I began my forty-seventh school year August 6.  After an entire lifetime of Labor Day-ish starts, it was decided that I’d begin #47 on what our district terms its “Early Start” calendar.  Notice the passive verb “it was decided. . .”  It was one of those I’m-a-total-jerk-if-I-don’t-agree kinds of scenarios; I could have refused probably, but someone else would have been significantly affected then, and given my kids’ ages, it wasn’t an apocalypse-caliber event for Team Weir.

I’ve been back at work three weeks already.  It should be mid-September.  Leaves should be descending from elms and maples, brilliant in their yellows and reds as they float toward earth.  Temperatures should start to dip, so that I am forced to grab a hoodie when I walk the dog.  It should be my birthday next week!  My office and my school are glacially cold–the thermostat in my therapy room read 62.4 degrees Tuesday, and I wear a blanket when I work in my office.  And yes, “wear” is the correct verb.  I need to bring back the work Snuggie.  OK, probably Snuggie didn’t create a version specifically for the workplace, but they should.  My point anyway is that it’s bitingly cold wherever I am these days, but when I step out of doors between schools or after work, I feel cuffed upside the head by the heat.  It’s very confusing.

It should be autumn. It’s not that I am wishing away summer, but my long-established internal clock tells me it’s September 14th or so.  And while I’m at it: Fall Ball.  My little one made the 2019 baseball team, and they began a 5-week Fall Ball season last Sunday.  ONE of their games of the five-week “fall ball” series occurs in autumn and only two days post-equinox, so “fall ball” is a lie.  Sure, it rhymes so therefore is catchy, but it’s really closer to “New kids on new teams, good luck on the MLB-sized diamonds, kids, you CAN be thrown out at first even if you hit the ball to left field” ball.  No wonder I’m so off!

In actual news. . .

Each of my son’s high school teachers’ course syllabi contained some type of contract wherein my child’s signature attested that he understands and promises to abide by the classroom policies and grading expectations set forth in said syllabus.  Parents too are made to enter into these same contracts, so you sign, hopeful your kid isn’t a total dick when you’re not around (he’s probably not a total tool, I feel sure of that).  Each syllabus contained too a comment section, captioned with text like “It would help if you knew this about my child.

Weighing the should I/shouldn’t I? angel and devil positioned on my left and right shoulders, I wondered how much to disclose this early.  You don’t want to lead with what he can’t do, but you want less that he be judged or graded unfairly because of the disease.  Yes, his school knows he has a Section 504 accommodations plan–there’s a little flag in the district’s data management system, and in theory all school staff are to be made aware of this.  But I work in this district myself, and if I had to hazard a guess, the only staff aware of what 504 truly means are the school psychologist, those teachers whose own children have/need a 504 plan, or those who have had a student with a 504 plan on their class list last year.  I did not just roll from the turnip truck, y’all.

For the English teacher who requires that kids mostly sit still, I explained that muscular dystrophy causes fatigue and discomfort, and that my kid cannot remain still for extended periods of time.  To the Biology teacher, I noted that muscular dystrophy stole my kid’s grip strength meaning he drops a lot of things (dig if you will the picture, beakers, test tubes, chemicals, microscopes in a lab–what will THOSE replacement fees look like, do you think?).  To the band director, I wrote that marching band with a bass drum along a parade route is probs a no-go.  He replied within a few hours, telling me that he would move him to a different, lighter drum, and one where the mallets are secured with wrist straps.  How I love musicians.

So far, so good is a fair statement covering his first few weeks.  His first official high school assignment grade earned an AD (which is an “A”, an “advanced” for those of you unfamiliar with standards-based grading), so yay.  I dropped his freshman butt off at 6:40 AM today so he could spin vinyl on the school old-school radio station before school starts.  There’s a football game tonight, and he joined the pep band, so look for him in the drum corps pounding out the backbeat to the Husky Fight Song tonight.  He will always be my baby, but now my baby is making his own lunches, he’s taking public transportation to school most days, and he’s doing homework without being told.  So far, so good indeed.

But not as good as this guy, a teacher at my kid’s school, locally famous for his Husky Lunch Songs.  It’s worth the minute it’ll take you to watch it.  Making hot lunch better, one chicken patty at a time.

If I Can Make It There

I’ll make it anywhere. That’s how the song goes, right?

I think I shall begin logging bicycle rides not by the number of miles I turn, but by the number of times I nearly get killed by a distracted driver. Today’s count is two. I originally wrote only two, but then edited because really one is all ya need. OK, one is too many. It would take just one to wreck me for good, so the target is zero. Nada. Zip. I should consider myself lucky to have survived another urban cycling adventure.

And it was an adventure. For four whole miles, I pedaled south along the shores of Lake Michigan. For four whole miles I passed no one, I heard no motorized anything. My goal was to ride south to College Avenue, about six miles south of home. I made it. Here’s the tricky thing though: it is not enough, not enough by half, to merely arrive at your destination to meet your goal. You also have to make your way back home. Which I did, triumphantly for me, to the notice of no one else on the planet. 14.7 miles, coupla airhead motorists, lots of ups and downs, achy quads and triceps later. Boom. Just like the old days. OK, not at all like the old days. But strong. Fine! Strong-ish.

Waaaay over there? Looking even smaller than an ant community? That’s downtown.

The Actual big news is that I am headed to New York City tomorrow. No, there is no Barenaked Ladies concert to attend, it’s a reunion of my college friends. The four girls I spent 4+ years cramming for exams with at Marquette in the late 80s are meeting in New York City. We are now scattered throughout the Midwest and East coast, and we’ve all reached this magical, stupid age, so why not?

I’m not gonna lie, up until this morning towards the end of my bike ride, I was pretty scared. I’ve flown before by myself, so it’s not that. It’s, well I don’t know what it is, but I know that my anxiety meter was pinging into the red.

The other four girls have all been there before, so I have nothing to do but follow them around. I was not responsible for making even one of the travel arrangements; in fact, the girls were good enough even to scout out flights for me. Still though, nervous. And a little guilty. Mom guilt is a bee-otch, you guys. My son, he of MD fame/infamy/neither of those, just the kid who is DYING to visit NYC, laid it on pretty thick for a brief period. Then I reminded him how old I am, and it’s just now my first time taking a bite out of the Big Apple.

Anyway, for the first time since downloading the Southwest Airlines app, I felt not apprehension but anticipation. They promised me they wouldn’t leave the airport without me, and I’m holding them to it. So technically I can make it there. . . I do have my boarding pass, and now all I have to do is pack.

Sue, Bridget, Beth, and Julie–Monitor Hall (the ugliest building on campus) Takes Manhattan–let’s go!

Table For Seventeen

Were I able to pick a more inappropriate time to have an “MD Moment,” I couldn’t have.  I certainly would never have selected last night’s celebration dinner honoring my son and three of his friends’ completion of the eighth grade as the moment to withdraw into my cocoon.  I wouldn’t have chosen a dinner with our friends and their families as my moment to retreat into the innermost recesses of my brain and lose myself in a future of muscular dystrophy-related what-ifs and whens.

If I could pick, I would pick not to know anything about muscular dystrophy.  Nope.  Step back further even–I’d pick that MD wasn’t even a thing.

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The four boys were having a grand old time on their end of the table, laughing at their hilarious (they obviously thought so) Apples To Apples card throw-downs or their YouTube shits and giggles.  Joyous teenage laughter echoed in the party room on one end of the table while the adults discussed movies (of which I’d seen none), boot camp fitness and long-distance running (in which I can participate in neither), and beer (which I do not drink).  Big mouth Wendy brought nada to the table, I served up a steaming, heaping bowl of jack squat.  I had nothing to add really, so I found myself watching my kid.  He looked happy, snickering with his friends, really happy.  The view was magnificent.

Someone asked the kids what their future plans were, you know, what do you want to be when you grow up?  Three of the four chimed with surety in their college majors, while mine said he hadn’t quite decided yet, and that is where the chink in my armor split wide open.  And not because I believe a fourteen-year-old can or should be expected to declare his college major.

But because his future holds more uncertainty than theirs, evident already.  I watched him with children–nay, young men now–young men he’s known since he was four years old, and was reminded again that he was different.  His two-handed death grip on his pint glass (filled with water, of course!) looks different than the casual way his friends held theirs, and for reasons unknown to me, I was undone.  His future is certain to bring progressive decline in his motor skills–his friends don’t have to think about that, and neither do their parents.

And I KNOW that his disease could be worse.  And I KNOW tomorrow is a guarantee for none of us.  Today is a gift we should rip open and hold up to the sky like The Lion King’s baby Simba heralded for all the world to behold!  Knowing to seize the gift of right here, right now, and actually grasping it are two distinct acts of behavior however, and sometimes, the dark side wins.

It won last night.

But now there’s today.  THIS is the reason I keep this little journal here.  Writing gives me a repository, a box to dump all my crap, organize the crap, and pack up the crap for never again.  Today, the sun is shining.  I’m distracted by my students’ musings and my end-of-the-school–year preparations–thank stars for a lunch hour reprieve.  I’m so proud of and excited for my son’s completion ceremony.  OH!  And MDA Summer Camp is less than a week away.  I’ll be carpe-ing the heck out the diem this week, I promise.  Well, I’m sure gonna try.