Nextdoor

One never knows who lurks next door, does one?  But good lord, one needs only to belong to a neighborhood social media group to experience by proxy the very worst in human behavior lurking right out there in the open.

Earlier today I sat down to pay the bills (and I swear on all that is true in this world, eleven hours later, I’ve done a million things today except pay the bills!).  Because I’m easily distracted though mostly because I don’t enjoy paying the bills, I checked my email (but also, some of my bills arrive electronically, so checking my email wasn’t exactly a complete waste of time toward the bill paying endeavor).  Anyway. . .

Scrolling through my junk email, deleting quickly as I clicked through 50-60 junk messages, I’m stopped by an email from the Nextdoor app with this subject header: Kid at door at 8:30 Sat. Morning.  I mean, I knew it wasn’t my kid up and at ’em by 8:30 on a Saturday morning, but for some reason, I clicked.  For the uninitiated, Nextdoor is a social media app used by residents to report on neighborhood goings-on, including critical news blasts such as this:

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“I am not donating because they woke us up.” To quote my friend Maureen, “Way to take a stand.” Sorry about the picture of a screen.  Super low-res of me–bad blogger, bad blogger.

For reasons I don’t fully understand, I lost my darn mind over this post.  The natural response to online garbage in 2019 is to fire back aggressively and IN ALL CAPS, which of course, I did not do myself on the app because that would expose me as this person’s equal.  Instead, I took my crabby pants show on the road to Facebook, like a responsible adult does.  Bah!!  I know, I know. . .

How do people behave in such incredibly dim-witted ways?  How does an adult post a photo of a child not of his/her own in a ranty, pissed-off, online what’s going on in the neighborhood app–the kid’s full face, you guys–and not give it even a moment’s pause?  I thought it was probably a screen grab from a video doorbell, which, unlike my tech skills here, was quite high-resolution, quite clear.

I circled back at the Nextdoor post after a couple Facebook friends responded to my post, confirming my WTH-ness.  I noted that the post had been edited.

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See I blocked out the picture of the child who is not mine from my public forum.

You can see the tone had been ratcheted down a notch.  I considered maybe replying with a somewhat, “Have you considered how much this child’s mother and father are going to flip their shit when they see this?” comment, but I chose not to, and do you know why I didn’t?  I don’t want a person who thinks this is OK to know where I live.  Fear.  This is my neighbor???  Yikes.

Shortly thereafter, a sweet and wonderful neighbor whom I actually do know (not of the misanthropic variety) informed me that the Nextdoor post had been deleted.

I marinated in my crabby juices all morning over just how gross people can be.  How insensitive, unkind, vengeful, and, and, and. . .  I felt no end to the abyss of negative adjectives I could attach to such a creeptastic post.  These are my neighbors, you guys, the “jury of my peers,” as it were, and it hurt a little bit to think that such rottenness lurks so close to home.  Literally.  After a while, I decided I had to be done with it. To assuage the icky aftertaste of meanness, I would do something good.  No, not enjoy a margarita, silly friends, it was still morning!  I’ve decided to do some trolling of my own, trolling for donations.

Rumor has it that by June 1, Wisconsinites can reasonably expect that snow will be melted and the daily average temperature be above zero.  Mother Nature’s current pattern of behavior notwithstanding, June 1 weather is expected to be lovely.  June 1 will mark our family’s fifth annual MDA Muscle Walk.  It’s the one “MDA family” family reunion I’ve attended since my son’s diagnosis, and since Team Greater Than Gravity’s inception, you’ve helped me raise nearly $10,000 for the Muscular Dystrophy Association.  You can click here to be directed to our team page.  Join us for the walk in person or by plastic–I’ll take support however you’re willing to share it.  For your preparation, I’m a total wreck the day of the walk, but I show up.  I do my best for my kid, WHO, by the way, is getting better by the day since his close encounter with black ice.  Navigating slowly, but better with appropriate medication, time, heating pads, and some kickass get well swag from Nikki, Dena, and Ann–how I love you all–has helped.  Physical therapy begins next week.  Fingers stay crossed!

And?  If some cute little Cub Scout or Boy Scout visited your door this morning, tying a plastic bag onto your door latch?  Fill it up, won’t you?  You have an entire week until those same youngsters will be roving your neighborhood to retrieve the bags, hopefully filled with non-perishables next Saturday.  Let’s show them we’re better than one bad apple.

And? No. I still haven’t paid the bills. *sigh*

Five Cents, Please

Nine-to-fourteen inches of snow was the prediction.  Grocery lanes were jammed with customers stocking their larders (if larders were a thing in 2019 urban Milwaukee) with the necessities a snowpocalypse demands.  Cancellations flurried in late Sunday afternoon, then dumped en masse and at the speed of light.  Kids rejoiced, then made a mad dash for sleds and snowpants.  School district superintendents pushed their social media campaigns for the most clever delivery of snow day school closings (the dude from Missouri Valley wins all, this week or last, hands down).

I was delighted not to have to set an alarm this morning and I’m relieved not to be navigating snow-covered, ice-crusted roads, not gonna lie about that, friends, but I expected more from “thundersnow.”  Though it’s picking up again, I believe they oversold it.

I spent a too-short weekend partially prostrate on my friend Ann’s couch.  Too short in part to my eagerness to avoid the impending doom of the snowpocalypse.  I really have become a wuss as my years on this earth advance.  Maybe I’m smarter too, but mostly, I’m much less a risk-taker than I once was.  Hoping to avoid an early arrival by Mother Nature, I hit the road before noon Sunday.

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Thank you to the inimitable Charles M. Schulz for his colorful characters with character.

In my little Peanuts metaphor, Ann is Lucy Van Pelt, dispensing psychiatric advice, and yours truly stars, or slumps really, in the role of Charlie Brown, trying to make sense of my anxieties.  I write about stuff here, but there, on her grey couch resting my head on the most calming, nuanced shade of coral accent pillows, is where I talked.  I won’t bore you with the details, but voicing the words, “I think I bordered on depressed for a few days” was cathartic.  Saying those words helped me realized I’m already rising through, returning to equilibrium.  Five cents, please.

Other thoughts from the couch. . .

Botox

No, I haven’t gone under the needle, but twice since Saturday and with two different friends, it’s come up.  My BFF just had bangs cut into her naturally platinum spiral locks–“cheap Botox” she claimed.  I wear my glasses more frequently, masking those deep, deep, deep furrow lines between my brow with chunky tortoiseshell frames.  I thought the laugh lines would be the most prominent as I aged, but it would seem I’m less jolly than I imagined myself, my face wearing worry or anger more often.  Boo.

I once proclaimed that I would NEVER consider plastic surgery.  I was 35 then, the hell did I know??  I am vain though, and I probably would shoot my face full of toxins if I weren’t terror-stricken that I’d become paralyzed, or worse, dead as a result.  I like my smile lines–wouldn’t change those.  And no, my lips aren’t as elastic as they’d been, but who wants to look like any one of the thousands of “Housewives” along with other celebrities, barely recognizable as humanoids anymore??  I mean besides the thousands lining up every month at their plastic surgeon’s office.  Stop the madness, ladies!  And gentlemen, for that matter.

The Next Revolution Renaissance

In education, we endure cycles of pendulum swings. In 2019 THIS is what’s best for kids, we’re told.  You’ve been doing it all wrong, y’all–THIS [insert new thing here] is the best approach to learning.  Stick around long enough and you’ve heard it all–Whole Language, Direct Instruction, Site-Based Management, Multiple Intelligences, School Choice (let’s just DON’T), Learning Styles, Problem Solving, Understanding a Framework of Poverty, Differentiated Instruction, Whole-Small-Whole Group Instruction, Full Inclusion, Common Core State Standards, Standards-Based Grading, Trauma-Informed Care, Social-Emotional Learning, Interventions, School-to-Work, College and Career Ready, Mindfulness, Every kid gets a Chromebook!  Geez, my fingers need a break from just typing!

Ann and I observed how the pendulum’s swing hasn’t quite returned to the opposite arc–instead it’s pinging at a near 90-degree angle.  When will we inch back to what teachers know actually works?  When will pedagogy be stripped from politicians and big-money publishing houses to be returned to teachers, you know, the ones who teach??  What will it take?  I used the term revolution; Ann more astutely remarked that we are lying in wait for the next age of enlightenment, the next renaissance.

I sometimes feel that my children are part of some half-assed social experiment.  Their time having been enrolled in formal education has seen more changes than in any period in my career. I eagerly await this Renaissance.  I’m happy this neo-Renaissance of which I dream comes with indoor plumbing and vaccinations though.  Science is real, yo.

Politics and the Government Shutdown

Nope.  Not touching it.  You know me?  You know where I stand.  I thank my lucky stars that I have Ann’s grey couch to dive deeply into ideas and ideals.  And lunacy.

Transgender Individuals

My son related to his father and me a conversation he’d had with a friend who is transgender about this individual’s identifying with the gender opposite the one at birth.  My son was working out the pronouns, and what I loved most about this chat was that his friend being transgender was really a sidebar to matter of this friend bringing “Cards Against Humanity” and “What Do You Meme?” to play during some free time after school, about which he was deeeeeeeee-lighted.  Those games are so inappropriate.  So stinkin’ funny though, and let me be your cautionary tale–they’re not games kids want to play with their parents nor parents with their kids.  I’m still blushing. . .

Brewers On Deck

My baby, the 6′ thirteen-year-old multi-sport athlete, through his baseball organization, had an opportunity to attend Brewers On Deck.  On Deck is a massive fan fest where Milwaukee Brewers baseball players are made to make themselves available for a day-long meet and greet.  Fans wait in line for autographs and photos.  The event sells out annually, and with a tuxedo-clad Christian Yelich having just received his MVP award the night prior, the kids’ entry was a premium!  The kid was ready to go, but begged off at the last minute.  He had a chance to meet his idol, Travis Shaw, but declined.  I’m told he crashed the boards and crashed his knee Saturday morning during his basketball game, so wasn’t at top form physically.  I can’t help but wonder if he has a touch of his mother’s anxiety though–he was petrified to meet Barenaked Ladies (granted, he was seven at the time) and he didn’t feel like it was OK to approach Alan Doyle after a show in Chicago a few years back either.  I think he’s an “I’m gonna admire them from afar” kind of guy.  Not that there’s anything wrong with that; there’s not.  But I don’t want him to throw away his shot.

2019 MDA Muscle Walk

Yep, I’m already ratcheting up about the timing of this year’s walk.  My younger son has a baseball tournament out of town that weekend, so I already know my husband and I are going to have to split time.  This year’s event is June 1, scheduled with hopes of warmer weather prevailing on walk day.  My son is “lucky” that his MD doesn’t come with the side dish of massive internal complications that many kids with MD endure.  But now I’m prematurely anxious/guilty about picking.  In missing one or the other, which child will be deemed  or feel more “worthy” of my attention, will all of us have all the right gear in the right city?

Anxiety is dumb.  But that’s the thing about anxiety–it’s worrying about something that might never happen.  But that doesn’t mean you don’t worry; you can’t help but worry.  It’s the very definition of anxiety.  I know I’ll be at the Muscle Walk, so why is this even a thing?

Probably I’ll figure that one out on my next visit down to Ann’s.  Miss you already, sweet girl.

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.

 

My Kind of Town: A Tale of Two Marathons

She did it!

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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. . .

Cons & Pros

I meant it when I wrote last week that I don’t get lonely.  Once I graduated college and dismissed the misguided, princess belief that having a boyfriend was the key to avoiding loneliness, I truly haven’t felt lonely.  I also haven’t enjoyed much alone time in my adult life, but those conditions are not equal, lonely and alone.  They’re quite different.  I like being with people, and I like being with me.

Alone time last weekend provided me time to do everything and not much of anything. I’m working through some cerebral work stuff, trying to see the donut rather than the hole.  I’ve been compiling lists of pros and cons–what I can control, how I’m hoping to behave, and how I can roll with the changes.  When futility set in, I set work worry aside and compiled a sillier list of cons and pros, light bulbs that flickered while my boys were road trippin’.

Con: The boys experienced an epic road trip without their mother. I missed them.  Pro: The sections of the house I deep-cleaned stayed clean in excess of sixteen minutes.  They missed me too.

Con: My idiot dog woke me up before 5:30 AM five days in a row. Four of those days were not work days.  Pro:  I top my dog’s favorite person list these days. Wait, that’s only an intermittent pro.

Con: Being the only dog walker.  Pro:  I crushed my 10K a day step goal every day.  Caleb got together for a puppy play date with his girlfriend, Nala, and her person Kathie.  Super, ultra mega pro: Day drinking with Kathie. Me, not the dog.

Con:  Ugly crying watching I’ll Push You   Pro: Watching the documentary I’ll Push You, and knowing television and remote were mine, all mine. Muwaaaahahaha!  I’ve been feeling a little “humanity sucks”  and “people are just despicable” these days, and this documentary shares a tale of a friendship like no other, introducing viewers to the finest, most compassionate, caring individuals who evince the absolute best in random strangers.

Con: My baby missed his Sunday baseball tournament.  Pro:  Game time temperatures hovered near 100 degrees, so I didn’t have to mom-worry about heat stroke or hydration for my boy. I still went and scored two of the games (Not well though, I’m afraid.  I was, for about 3 hours, convinced I was having a stroke, but we’re going to go with “heat-affected” or possibly “dehydrated”).  The boys cemented a third place finish, and I was happily surprised to bump into E’s coach of the last two years.

Con: My baby’s disappointment at not being part of the tournament or getting to chat with his former coach.  Pro:  He was super excited for his teammates’ success.  Also, this text message is a next-level pro. I texted my kid a hello and a little exchange from his former coach.  My son’s response whispers to me that we must be doing something right.

Con:  Missing my family.  Pro:  Being content without them.

Con:  The eventuality of the credit card statement.  Pro:  A trip of a lifetime for them all–a bargain at any price.

3,564 Reasons You’re Incredible

You did it.  You helped our team hit our fundraising target for the 2018 MDA Muscle Walk.  Team Greater Than Gravity collected $3564 for the Muscular Dystrophy Association.  YOU DID THIS.

Muscle Walk Total

Your dollars are possibly sending several kids to summer camp.  Perhaps those dollars are helping fund a pharmaceutical lab assistant working toward a treatment, or maybe they’re helping a family fund a wheelchair or ventilator for their child.  I don’t get to direct precisely where the funds land, but I know that each and every dollar is well spent.

A dad, a mom, and I were invited to speak before the walk began Sunday, and you’d have to be some kind of stoic not to have a tear in your eye listening to those two parents speak about their children–how they knew something was wrong, and how long it took to determine just what that something was.  How it took years of effort and investigation to find the right medical professional to steer them toward, and then settle on that MD diagnosis–it was story not entirely unlike ours–MD is sneaky, and its variations so disparate.  There are some “common” or more “identifiable” subtypes, and there are also a slew of other subtypes not so clearly evident.  You know something isn’t quite right, but your “what is wrong?” compass doesn’t settle due north.

I didn’t share much of our story on the microphone because my son is fourteen, and it was horror enough to him that I was even up there.  Before I agreed to speak, I talked with my son, asking him if he would be OK with me up there and he agreed so long as I didn’t point him out or betray any privacy (or look at him while I was talking, or, or, or. . .), and out of respect for him, I did not say too much.  It got me to thinking that the lifespan of this blog was maybe nearing its sunset.  I probably wonder something like that every time I hit “publish” to be honest.  Writing these days is less about my boy with MD and more about my four-legged boy with a penis infection (the dog). My life!

I’m happy I can do the walk, raising awareness and money for an honorable cause, but I am glad it’s over.  I feel physically beat, and NOT because the walk was physically demanding.  I’m tired.  It’s an honor, an exhausting honor, to help support the MDA, but I think now I need a nap.  Does that sound lame?  Ungrateful?  Please know that it’s not ungrateful.  I can live with lame.  I’m a total weirdo on walk day, a fact to which anyone at the walk can attest.  Sorry guys.

This team is comprised of family members and friends I see routinely, friends from high school, work friends and colleagues who quietly surprise the hell out of me with their support here.  My crew contains anonymous donors, a former boss, a writer I’ve met blogging, parents of my son’s friends, my Barenaked Ladies ladies, and people I’ve never even met! I know you don’t donate to our team to read your name here in my goofball blog, but I would be remiss in not posting an honor roll.  It is truly my honor to know you, and that is true even if we haven’t met in real life.  Thank you.  There are a million organizations you could choose to lend your support, and somehow, when I ask, you choose mine.  There are no words to express what that means.

Ann Calverley, Sean Carlin, Bridget Panlener, Greg Amborn, Beth Sandmire, PJ Early, Alicia Kraucunas, Terry Radtke, Ginger Stapp, Amy Van Ells, Sue Wacker, Diane Piedt, Nicole Garza, Shelly Weisse, Lori Lepak, Patti Bohlman, Laurie Stilin, Jill Holmes, Stacy Skenandore, Chelsea Laub, Heidi Britz, Nikki Leininger, Michelle Sjoblom, John Weir, Bek Szypula, Rose Mary Walecki, Rhonda Weir, Bob Kosky, Amy Behrendt, Rene Damask, Gwen Evseichik, Jenna Stoll, Sally Warkaske, Janice Schwind, Jennifer Sanders, Steve Inman, Charlie Pozza, Valerie Hoehnke, Barb Berman, Kathy Gregorski, Maggie Palutsis, Julie Freyre, Chantal Van Uytfanck, Anonymous donors, Lisa Lien, Tracy Klement, Julie Smith, Heather Koll, Patti Sereno, Christine Carey, Shelly Boutet, Jodi Liebelt, Rebecca Halsey-Schmidt, Jane Mlenar, Ula Julien, Ann Kukowski, Mike Zyniecki, Anne & Bob Kosky, Todd Condroski, and Michele Nixon–you are the best of all the people ever.

I told the walk participants that the list of things I’d rather do than ask for money is long.  Really, really long.  And then I said that while I hated it, I’d continue to do it so that my child and others with muscle disease get the chance to go to camp, the chance not to be the only one.  I promised to continue showing up because showing up is the first step.  Thank you for showing up with me.

If you ever wonder if you are making a difference?  You are.

 

Verbal Diarrhea

Saying “verbal diarrhea” sounds comical.  In writing, the phrase looks vulgar, but who am I kidding?  I’ve considered an alternate title, yet this phrase succinctly and correctly captures my crass, adolescent-dude-masquerading-as-middle-aged-mom to a tee.

I own the affliction.  The shoe fits and all.

The Muscular Dystrophy Association’s summer camp director emailed me a few weeks back, asking if I’d be willing to share our family’s MDA story, to share what camp has meant to my son and/or to us.

I loathe asking for money (but PLEEEEEEEEEASE donate to our 2018 Muscle Walk campaign by clicking here).  The list of things I’d rather do than solicit donations for our Muscle Walk team covers more linear feet than the distance from the earth to the moon, but I can write and I can talk.  So, after joining the MDA “family” three years ago, I finally went to a family hoe-down.  And by hoe-down, I mean business meeting.  MDA staffers from around Wisconsin met to kick off this year’s camp planning, and asked me to toss in my two cents.  Everyone introduced him- or herself, so I knew who to thank, and that is how I began: with thanks to them for their work on behalf of individuals afflicted with crap muscle disease.

I think I was meant to be inspiring.  Stop laughing.  I can hear you over here, you know.

I was decidedly not inspiring, but I did share our narrative.  Not knowing my audience ahead of time, not knowing how many people would show up, I did not prepare any remarks.  You speak differently to a group of ten people around a table than you do in front of an audience of a couple hundred, so I flew without a net.

We have a story, and my recitation of our story feels and probably sounds like a script.  I don’t know if that’s what they wanted of me, but that’s what I related: our story.  I talked about how we came to learn about MD–how an offhand “It’ll probably be months before they get you in, so don’t worry, it’s just a rule-out” became “He has an appointment with Children’s Hospital Neurology on Wednesday.”  I said, “You’re all lovely people, but I wish I didn’t have to know you.” (and no, I didn’t use the f-word because I used to say ‘I wish I didn’t have to effing know you,’ but they invited me, and you don’t use the f-word in a business meeting.  Usually.

I explained that immediately following the diagnosis, I took to the internet to chronicle my feelings.  It wasn’t shameless blog promotion, because really, my blog hits a pretty boutique market–I’m not for the masses, I get that–I didn’t bring it up to ask them to read it.  I brought it up I guess because this blog has been my companion since that horrible January day.  Nearly every MD revelation that’s floated through my cortex has found its way here.  Three years later, I’m still Greater Than Gravity-ing.

And now I can add talking too much to my MD mom experience.  The members of the group with whom I spoke were gracious and attentive, but I couldn’t shut up.  I just kept pushing through my narrative, kept talking, staring off into middle distance too often probably.  I wanted to tell them exactly why greater than gravity, but that wasn’t part of the script I didn’t know I had followed I guess.  But that’s it!  Love.  The love I have for my child, the mama bear love that makes me have to write so that I can deposit all the marbles rolling loose in my head and be present for him.  Love.  It’s greater than gravity.  Betcha Ed didn’t know how much that, or any lyric would possibly come to mean to anyone when he wrote the song.  It’s dumb if you’re not me.  I know, it’s OK.

Muscular dystrophy is my kid’s story, not mine.  My story is how I became an unwitting blogger after learning my child had a progressive, terrible disease, and how this unintentional blog has become my confidant.  Since the patina of shock has now been dulled by three years’ time, I don’t write about MD every post.  But I have this collection of 200+ stories about parenting two boys, public education, my friends, Barenaked Ladies, baseball, my squishy-faced, sock-stealing idiot rescue dog (whom I LOVE), and kitchen remodeling.  I wonder how bonkers I’d be if I hadn’t written this all down.

Through my collection of tales, I’m given opportunity to thank those people who matter tons to me, and I’ve been able to educate, inform and yes, raise some money for the MDA, so kids like mine can find where they belong.  Even if it’s only for a week, it’s A WEEK.  You just don’t know what that means, to find your home.  For my kid and too many others?  It’s greater than gravity.

They asked me to read the letter I wrote to the camp counselors last year and I did.   I didn’t even ramble on.  I didn’t even ugly cry.  It was hard, but I did it.  I can talk and I can write.  I may not be a top fundraiser this year, but I did a good thing.

‘Tis Better To Give Than Receive

Merry Christmas, Everyone!

Our family is not religious, we are of the secular Christmas card-sending/Nutcracker Ballet-attending/gift-exchanging/reveling in the joy of the season lot. Santa will not be shimmying down our chimney tonight, and I miss that magic we shared with our children over the previous thirteen years.

I have been positively gleeful this December. That is not hyperbole. I am late in my preparations, but a smile–sometimes broad and hearty, others sheepish as if to say, “Holy schnikes, I have a crap-ton to do. I’ll get there, I always do!”–has been a fixture this fa la la la la la la la la.

I received a gift yesterday. This gift came in the form of a check and explanatory letter. When you see shades of doubt slivering through the fabric of your faith in human decency, remember my friend and the story I’m sharing here. My friend is an intensely private person, so a few edits were made in order to respect that.  I will never betray the trust she’s put in me over the years.

Dear Wendy,

When I was growing up, my family always watched the Jerry Lewis Telethon on Labor Day weekend (confession-not really because of muscular dystrophy, but because there were only three or four channels to watch).  We tuned in to check out various performers and entertainment and made sure we watched the end of the show to see how tired Jerry looked after staying up all night.  We thought it was really cool and crazy that he didn’t go to bed all night long.  We watched him sing at the end of the show on Labor Day evening as every year they showed record breaking dollars donated.  Jerry always got emotional and cried while singing his closing song and he looked all disheveled with bags under his eyes, shirt untucked, hair a mess–we loved to make fun of him in our immature kid-style way.

One year, we decided to help raise some money for MD.  We took our red wagon and went knocking on doors in the neighborhood asking people if they had empty pop bottles that they could give us to return to the store for the deposit refund to raise money for MD.  When our wagon was full, we pulled it home and transferred the bottles to the back of the station wagon and went out to more neighbors.  When the station wagon was full, mom or dad drove us to the grocery store where we cashed in the bottles then we would go back home and repeat.  At the end of the day, we donated our daily profits to MDA.  We did this for years and I think of it fondly every Labor Day weekend.

I now also think of you and your family on Labor Day.

I have not donated to MDA since I stopped collecting pop bottles.  Jerry Lewis inspired such a fun family activity and obviously brought great awareness to MD.  With Jerry Lewis’ passing this year, I thought it was a good time to make a donation.

Please help my check find its way to make the donation.

I admire how you handle all in your life and can only imagine how difficult some days must be.  Your son is very lucky to have you for his mom.

I’m not crying, YOU’RE crying!  Of course I’m crying.  I read parts of her letter at least three times before I was able to finish because my eyeliner was running by the second paragraph.  What’s the right word for how my friend’s kindness affected me?  Touched?  Moved??  Ugly cried??? 

My niece Lauren, who after my son’s diagnosis became an MDA Summer Camp counselor, has now committed to the MDA’s Team Momentum for 2018. She will be running a marathon to raise funds, awareness, and hope for individuals and families with muscle disease. Half my friend’s donation will go to support Lauren’s marathon endeavor.  Click here to read about an amazing example of today’s youth.  Team Greater Than Gravity strolls in its fourth annual Muscle Walk this spring, so the other half will be the donation that kickstarts our 2018 Muscle Walk team effort. Donations made to the MDA before December 31 will be doubled, up to $100,000.  That’s a lotta marshmallows toasted around the campfire, friends.

My Christmas wish for you all? That you have the good fortune to be surrounded by goodness, light, and love.  I’ve never known a time where I didn’t find myself among good friends.  Because of my son’s diagnosis, I’ve borne witness to good friends doing great things.  Still not grateful exactly for MD, no, but for the goodness and light it has illuminated in others?  That is my gift.

It’s Christmas Eve and it’s snowing.  And that is the lesser of today’s miracles.  Thank you.

xoxo

So, Uh, Thanks

The cranberries are sugared up and boiled down into a compote, green beans layered with cream of mushroom soup and whatever the hell French’s does with onions, and the turkey’s stuffed. The aroma of the single biggest shopping day of the year wafts through the kitchen. Truth be told, my only culinary contribution for this year’s feast is one pumpkin pie.  I don’t even like pumpkin pie.  My kitchen wizardry is woefully underutilized this year. I feel incomplete, inadequate.

The real reason we collectively eat ourselves into a food coma, drunk on tryptophan and/or a nice Beaujolais or Gamay? The Detroit Lions and Dallas Cowboys!! NO, silly, it’s Thanksgiving!  Happy Thanksgiving, America. And that would be a Happy Thursday to the rest of my friends around the globe.

If you’re my friend on any of the social media outlets or hey, if we actually get to speak to one another in the real world, you see I am pretty consistent in my expressions of gratitude.  I’m good at dishing it out, but I’m great at deflecting any expression of thanks directed back my way.  Why is it that gestures of thanks from others take such effort to accept?

I am grateful for what I am and what I have.  My thanksgiving is perpetual.  –Henry David Thoreau

Me too.  Nice job outta you, Thoreau, you beat me to it. I’d like to be reverent, but because I am a juvenile masquerading as a middle aged woman, this is what comes to mind any time I hear Thoreau’s name bandied about–

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Image from Wal-Mart. I don’t shop there, but I do appreciate having found this image on their webpage.

Henry David Catch! Baaaaahh!! Hi, I’m 12.  But I’m a grateful 12, and like Thoreau, I find happiness and gratitude in things great and small each day.  I’m happy that I make it to work every day after driving along Capitol Drive, the nearest I ever want to get to driving on the Indianapolis Motor Speedway, here in the central city.  It’s disheartening to see how motorists have so little regard for life–mine AND their own–that they drive like something out of an action film, or maybe what’s depicted in Grand Theft Auto (I’ve never played the game, so I’m postulating here).  I’m glad I arrive at work not dead every day is the point.  I’m happy for tulips in the spring.  I’m happy my children are achieving academically.  I’m happy for Kopps Frozen Custard sundae of the month.  I’m happy my dog thinks antibiotics and pain meds are treats–he will chomp down and ingest whole tablets and even sit in order to receive them.  Good boy, Caleb!

But of course there’s more than the little things to be happy about.  I’d be remiss in not sharing some of my favorite turkey day thankful main dishes, so here goes: a few things I’m thankful for this Thursday.  My Thanksgiving not-list is neither perfect nor pretty, and come on, you know me. . .  it’s certainly not symmetrical.  But it’s sincere.  Happy Thanksgiving, everyone, or Happy Thursday if you’re not from ’round these parts.

  1. My best friend is flying from LA to Milwaukee IN DECEMBER to see me. She loves me enough (or is off-kilter enough?) to leave sunny SoCal in December, and all I have to do is loan her one of my winter coats.  You guys, my best friend is gonna be here next week!!
  2. My Barenaked Ladies besties love me enough to spring a ninja concert trip on me.  Nikki and Bek arranged a ticket and transportation to the December 9 Toronto gig I was absolutely not attending. The girls announced their scheme after the purchase was made so I couldn’t say no.  To be perfectly honest, I said nothing for a day or two. I am so undeserving of this kind of over-the-top generosity, so I sat mute.  I’m not very good at people being nice to me, so I was reluctant to come around to my “yes.”  I should try to get better at people being nice to me.
  3. Hey, speaking of Barenaked Ladies (who, me?) my coworkers, hale and hearty souls, are making it a team effort for the June BNL show in Milwaukee. “We don’t need to sit in the front with you, but let’s make a night of it!” They’re choosing to spend time with me when they don’t even have to. Of course, once the band hits the first note, I won’t turn around again until it’s time to leave, but we will be together in spirit. Well, they will be together, and I’ll be by myself, zoned out a bit closer to the stage. Christine will be the one silently dying in embarrassment for me while I sing & dance my butt off, but that’s cool.
  4. I’m thankful my husband who, not a huge BNL fan himself, gives me space for my unbridled, giddy glee when a new album is released, and shares some measure of excitement when I call him on the phone, all choked up shouting, “YOU HAVE TO LISTEN TO THIS SONG!! ED USES WESTLEY AND BUTTERCUP IN THE LYRICS!!!!”  If you don’t know the reference, Westley and Buttercup are the star-crossed, nothing-can-separate-true-love lovers from The Princess Bride, which happens to be the first movie Tom and I watched together at a time in my life I needed more than anything to believe in true love.
  5. I’m thankful my husband leaves me little notes like this one he wrote Saturday morning before departing for work.  I know, “you guys are so cute we wanna barf.” We get that a lot, but aren’t Westley and Buttercup what we’re all shooting for? You + Me Vs The World, baby.
  6. Got Weirs on my right and Wolfgrams to the left. Looking forward to a long weekend, spending time with almost every branch of fruit or nut of my extended family tree at some point.
  7. I’m thankful to the point of speechlessness that I have an all-star supporting cast of luminaries whose generosity helped me raise over $5000 for the Muscular Dystrophy Association in 2017.
  8. I’m grateful for my friends, a cast of characters you wish you were your friends too. This year I offer special thanks to P.J. She killed it with her own shoulder rehab a couple years back, and within hours of reading about my injury, delivered a box of implements and tools designed to simplify life in the kitchen. And also wine, because wine! I opened that gift tonight, enjoying it in the spirit of thanks for her support and concern.
  9. I’m relieved that my friend Matt who was nearly killed in his home last spring, is safe and sound, and that two of his attackers have been sentenced.  You can hear Matt’s story about the sentencing here.  In related news, I’m glad his physical scars are continuing to heal as well.
  10. I’m fortunate to have a boss who says and means family first. This credo is especially important when your child has a disease that requires ongoing management and intermittent therapy appointments.
  11. I’m happy that a song can catch me on the precipice of the abyss and pull me back.
  12. I’m grateful I can read, write, and reason.
  13. And that you’re here reading.  Really.  THIS is my greatest wonder of the last several years: I write. You read.  There are so many ways to pass one’s precious time, and you’re here reading my words.  It means the world.
  14. I’m happy that I have enough.  I’ve never known hunger, and I’ve never had to worry about finding a safe place to sleep.  I’ve worked in the inner city for twenty-seven years, and finally I’m forced to acknowledge that I am struggling with the sequelae of urban poverty. The lack of basic needs being met, the language, hollering, the physical harm, the violence perpetrated–inflicted!–upon the city’s smallest people–it’s too much.  I’m increasingly less well able to handle a preschooler tell me, ‘F-off, white bitch! I ain’t gotta listen to you.”
  15. I’m happy that my children have enough. We do not live like royalty, but I can say that when mine were preschoolers, the worst I feared escaping their lips were “toot” and “fart.” Watch this. You won’t regret having spent the twenty-four seconds here, even with the poor quality videography. And yeah, to this day, the minute he gets home, he tosses off just the one sock.

https://youtu.be/YLgbJJS8ltY
For what are you thankful, dear readers? What wraps your heart up with contentedness the way this video of my no-longer-babies does for me?  Happy Thanksgiving, y’all.  Can I make you a leftovers plate to take home?