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.

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.

 

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.

 

‘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.

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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?

Dear Counselors,

My son goes to MDA Summer Camp Sunday.  Last week I received a call from his camp director who asked if I’d consider writing a letter to the incoming counselors.  Their meet & greet and training are to occur Saturday prior to the kids’ arrival.  Sarah, the director, told me these letters from parents would be opened and read by the counselors during their orientation.  The intent, I gathered, was to provide the counselors insight about how important and valued their role is to campers and their families.

I mentally drafted 70% of my letter while still on the phone with her, and forgot it immediately upon disconnecting.  I’m not sure what I ended up with was exactly what she was looking for, and I didn’t edit as well as I’d have liked.  Golly I miss having a functional short term memory, so I had to rely and draw heavily from the blog post I wrote upon his return home last year.

Words, as the always seem to, fail me when I need them most.  To those of you magnificent souls who helped get him there, I thank you.  I thank you again and always and then a few times more.  Whether you donated to our Muscle Walk team, showed up on walk day, said, “Hey Wendy, I’m thinking of you and your kid,” purchased items from the camp Amazon.com wish list, or read and/or commented on one single blog post here, you were with me, you made this happen for my kid and others like him.  May your kindness and generosity be returned to you one thousand and three times over.  One thousand and four. 

I will miss my boy tremendously this week, miss him like bunches and bunches of crazy, but I am not worried.  Not one bit.  He is where is supposed to be this week.

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Here’s what I concocted for the Saturday night counselor campfire.  What do you think?

Dear Counselors,

Thank you is always a good place to start, right?  So thank you.  You could do a million billion things this week, and you have chosen to spend it with kids socked with one of the many forms of muscular dystrophy.  Thank you.  That alone, your being there, says something about your character and human decency.

If you haven’t volunteered for MDA or any summer camp before, maybe you’re thinking this will be a good experience, something that looks good filed under community service or an impressive add to your college application.  And you’re right about that, it will.  You will find that being a counselor at MDA camp is more than just a resume-building experience though.  You’re changing lives, and there really isn’t finer work you can do for kids (or yourselves, frankly) than being there, being someone who cares about a kid who needs you.  I suspect by next Friday, you’ll leave this place changed.  Sure, you can check off camp counselor on your to-do list, but the imprint you leave on the child you’re paired with won’t be so easy to check off and move on from.

When we meet at drop-off tomorrow, I’ll be trying really hard not to cry while my thirteen-year-old son is trying really hard not to die of embarrassment.  Thirteen-year-olds don’t give away a whole lot, and the thought of his mom getting emotional (again!) in front of you will make him crumble inside, though he probably won’t tell you that.  But you will learn things and experience things with him that I never will get to do.  You’ll see a side of him where he feels at home, feels confident and capable, the side that feels and actually gets to be exactly where he is meant to be.  You’ll see the side of him that believes he is a part of something, and not the odd one out.  You’ll see him do really brave things and take risks.  Take note of those things; they are a gift to you, a relative stranger, but soon to be my son’s close confidant.  You get a gift his mother will never receive.

Even a novel-length letter would never adequately convey my gratitude with words.  Words are insufficient to express what beats in my heart as I think about what MDA camp means to my family.  The depth of my thanks, the way my heart is skipping right now as I try to say what I mean to say?  I want to get it right.  I won’t.  Words like so, very, incredibly, really, extremely are mere fillers.  I’m the kind of person who has a song for every occasion, but since I’m neither a singer nor songwriter, and my favorite musicians have yet to write a song about this, my thank you song remains unsung.  Plus, you don’t want to hear me sing.  Trust me on this one.

I will miss my kid, but during camp, he will need me less than I need him around.  It’s the way it’s supposed to be, I understand, and I think his week will be perfect.  He needs YOU.  Though he may seem aloof, and not exactly socially gifted, he needs you.

I wrote this next bit a year ago after my son returned home from MDA camp.  Reading it again a year later, it feels like another lifetime.  But at the time, the emotions were fresh.  THIS is the kind of impact you make as a counselor:

We’re ready to go.  I get our car queued up; my son’s had help getting his gear packed, so all that is left is to say good-bye.  Dillan (his counselor last year) hugged my kid hard, told him how much he enjoyed being around him, and told my kid he loved him while my weird, giant seventh-grader held on for dear life.  I think his counselor had to prop him up, no small feat there (because he’s 6 feet tall), because all my kid could do is hold on, nod his shaggy head in agreement and sob.  I’ll never forget that moment.  I’ll never forget that my oft-detached child found home right there, right then.

“Why are good-byes so hard?”  That’s a question for the ages, kid, I told him.  Hours later, he unleashed emotions that before then I’d never known him to express.  “I want to go back to camp.  I want to be with my friends.  I just want to be with those guys.  I finally felt like I fit in, that I wasn’t the odd one out.  I found friends where I belong no matter what. I just want to be alone.  Or I just want to be back at camp.”

So, counselors, thank you.  Thank you for making camp my boy’s home away from home. Thank you for being there for him, for all the kids.  Thank you for donating a week of your time.  If you ever wonder if what you’re doing matters or makes a difference?  It matters.

Have fun!  Don’t forget to have fun.  Ever.

Wendy Weir

Singin’ In The Rain

It was a dark and stormy night.

It wasn’t, but I bet you’re all picturing Snoopy perched atop his doghouse, banging away on the keys of his typewriter, aren’t you?  You’re not?  Well then you’re much, much younger than me.  You’re lucky in that way, but it’s sad you missed out on the Peanuts greatness.  Wow.  It didn’t take long at all for me to steer off course on this post now, did it?  I call a do-over.

It was a dark and rainy day.  That’s better.

It was a dark and rainy day, but muscular dystrophy doesn’t allow for rain delays, so neither did the walk.  Can you feel triumphant and terrified at the same time?  That.  Sunday was a hard day.

I have been saying for months now that I will find a way to capture in words the gratitude I have felt in my heart. Turns out, there is simply no way to accomplish that. Instead, I will let pictures speak the thousand words they are said to do.

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I walked for my son.  Here’s why the other participants did.  Thanks to the MDA Southern Wisconsin Facebook page for this photo.

I got my own sign!

My beautiful niece Lauren, who will be in her third year as an MDA camp summer counselor made the trip from the U of Minnesota to be here.  She was admitted to grad school this week to pursue her MS in speech-language pathology.  I’d like to believe I had a little something to do with that career decision.  (I really would like to think that!)  Love this girl!

We were Team #2 with $5,399 in total funds raised.  You guys?  I can’t even.

The day before the event, I received a text from my friend Sue, who reminded me that exactly one year ago, I provided her words of support and comfort as she sat beside her dying father.  She wanted me to know that my message made a difference to her, and meant a lot, meant enough to tell me a year later that I helped her.  And she sent me her own message of love and support.  And yeah, I cried when I read her message.  She helped me right back.  I am a lot of work sometimes, but I must be doing something right to have latched onto and maintained friendships with truly wonderful people.

The MDA invites a few of its clients and parents to speak at the walk kick-off.  It’s painful, hopeful, emotional, and I’m not sure a dry eye can be found in the room.  My son had to step out, and I pretty much wanted to die right then for him, but my friend Jill, no fair weather friend she, showed up at precisely that moment.  I was stunned to see her, and her timing was perfection.  A much-needed distraction at the most-needed moment.

Shortly before the walk kick-off, my little guy’s best friend’s mom texted me, saying she and E would be arriving late to the walk.  I didn’t even know she intended to come.  We met outside the Aquatic and Reptile Center, and as we walked in, I thanked her for coming.  She told me that her son said he wouldn’t have wanted to come if it were for anyone other than my big kid, because “he’s kind of like my brother, you know.”  And that is when I really cried.  She hugged me while I cried, right there in front of the giant iguanas and jellyfish.  Because you can’t stand there and cry at the zoo, and because iguanas and jellyfish are really unsympathetic, I began to hum my personal battle cry, my song, to shore up my resolve.  Singin’ in the rain.  Well, singing in my head anyway, technically I was humming out loud.  Quietly.  But I made it.

You know who I don’t have a game day picture of?  My boy.  My boy, the reason I do this, all of this.  Didn’t get a photo of him that day.  He kinda had his own thing going on, and he’s thirteen, you know.  Not super happy to be photographed on his best day, so I didn’t push it.

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My boy.  My love for you kid?  Read the shirt.

I asked.  You answered.  5, 399 times you answered.  I will never feel lucky that my son has this diagnosis.  My son is more than a pre-existing condition, and I hope against hope that this, that MD, doesn’t become what defines him.  But this diagnosis has shown me the very best in people–people I am beyond lucky to know, people I don’t know, people I know only through my writing, and some souls whose identities remain elusive answered when I asked.  Thank you.  Love with a capital L to you all.

#WhyWeWalk

When you attach a living, breathing person to it, the face of MD becomes a little more real.  When the MDA asks, you contribute in the ways you can.  The contribution of my “talent” (writing this here blog) is insubstantial, but it is what I can offer. So I do. Not well, but with my heart, and that’ll have to do. I have little to offer, but I thank YOU for your substantial gifts and support of my kid and me.

The video below was compiled by Elizabeth at our MDA chapter office ahead of this year’s Milwaukee Area Muscle Walk.  It’ll be our third, and I’ll definitely feel like throwing up most of the week of up to and including our arrival at the walk site.  Last year I took a little time out in the bathroom while my friend Nikki texted me through my anxiety attack just after we arrived.  I may look all cool and collected on the outside, but. . .  Actually typing that last sentence alone is freaking hilarious.  Nothing about me appears cool and collected.  Fun?  Sometimes.  Funny, sure.  Frenetic?  A wee bit.  Not so much on the cool and collected.

My big kid is #whyIwalk. He was diagnosed with MD in 2015 at age eleven, and for the first few weeks after the diagnosis, the shock of the news was so much so that I could manage little more than to stare off in middle distance. So I began to write an online diary, which became this blog. Writing organized my feelings; it gave me something to give to others who asked, “What’s going on?” when I didn’t feel like talking about it early on. With the help of this online platform, I was able to raise an amazing amount of money for the MDA without having to ask people face-to-face, which is something I’m not terribly comfortable doing. My son attended MDA Summer Camp in 2016, and the experience was transformative and life-changing for him. I walk to help send him and other kids with muscle disease to camp. I walk so that other kids get to feel included, like they’ve found the only other bunch of kids who “get it.” I walk so that other kids find their safe place.

You see that each family has its own reasons, but common threads abound:  Hope.  Love.  A cure.  To walk for those who cannot.  In gratitude. In memory.

I’m asking again, and I’ll hate doing it, but I’ll keep asking until April 30. Click here to find our team page.  My supporter honor roll continues to grow as does my gratitude.  Your kindness and generosity leave me breathless, but my words will never be enough to thank you.  Love.  My love for you?  It’s greater than gravity.