Weird

A slap in the face can come in the form of words, not actions.  I don’t recall ever being physically slapped in the face though, so any such slap has been a figurative one.  The Mother’s Day slap stung harshly.

The sky shone blue on Mother’s Day, a sapphire so perfect and rich it looked like it had to be a painted stage backdrop.  My husband and the boys decided we would take an early morning trek to our funky, local coffee shop for breakfast because 1) coffee, 2) I love going out for breakfast, and 3) Mother’s Day goodies for everyone!  The shop is one mile exactly from our home, usually a doable walk for us all.  About two-thirds of the way there however, my big kid complained of pain, and needed to take a breather.  I fall down a mountain and report back in excruciating detail about my bruises and abrasions until the last of them has faded.  I trip down the stairs with regularity, and anyone in the 53207 postal code hears me fuss.  My big kid though?  He doesn’t complain.  It’s just not in his DNA.  So for him to complain, I knew he was struggling.

We made it to the coffee shop life and limbs intact after all, but my big kid was definitely not himself.  You run through the maternal 5-point illness/injury probe: with one pointer finger, point to where it hurts; is it stabby pain or throbby pain?; did it just start hurting like right now, or have you been pushing through for awhile?;  do you have to poop?; can you move or do I need to run home and return with the car?  OK, it’s not technically a protocol, but man, I was hoping it was just an “I have to poop” thing.  If you have sons, you know exactly what I mean here.  “I have to poop” is I’m sure at the root of many mommy panic attacks and midnight calls to the nurse practitioner triage line.

Days later I remain fuzzy about the symptomatology and unsure of its etiology.  I do believe it was MD-related, which he denied.  He fatigues easily, which leads to a weird MD cycle: When your muscles fail, you get tired easily so you don’t develop the endurance to walk long distances.  Because you cannot walk long distances, you don’t develop good cardiovascular health, which affects endurance.  Because your cardio and lung capacity is reduced, you don’t engage in extended physical activity, and so on, and so on, and so on.  We stopped three times on the way home, which was A-OK by me, and it was at the third stop where all (well, some) was revealed.

Sir Trips-A-Lot accidentally took out a classmate’s chair Friday afternoon.  Proprioception not being one of his special gifts, he accidentally kicked the leg of the chair next to his, and his buddy went down.  The substitute teacher on duty was certain it was done with intent and malice aforethought, so told my kid he would be telling his regular teacher.  Big kid made it right with his friend Friday before the end of the day–it WAS an accident of course–but he feared the consequences he thought were to come.

“How do you want to handle this?” I inquired.  “Do you want to see what Ms. S has to say to you Monday or would you like me to email her before tomorrow to explain your version of the story?”

I was impressed that he wanted to handle it on his own for starters.  I told him that he if thought he was being treated unfairly, then I would contact his teacher if he believed it necessary.  I also told him that his regular teachers understand he has MD, and that sometimes his body does weird things.  I say this not as a free pass for him, but as a statement of fact.  If he took the kid out intentionally, we’d be having a very different conversation.

“Some of my classmates say I’m weird,” he ventured.

“You ARE weird,” I replied without missing a beat.  The look on his face???

“We’re all weird, it’s cool.  Some of your friends are weird or do weird things, right?”

Both my husband and I talked with him in the moment in generalities about weirdness and uniqueness, but I was the only one of us three whose eyes were teary.  See, the outliers know they’re different before anyone has to tell them so.  I know I’ve used those very words before, but they remain true.  It’s one thing as a mother to know these things, but quite another for your child to share them voluntarily.  He never complains, as I said, so I knew it mattered.  This parenting gig is not for the weak, people.  It was Mother’s Day, but I no longer felt super celebrate-y.  I felt lovey and squishy and nostalgic for their lovey, squishier toddler hands and bellies, and a bit sad that adolescence is doing what adolescence does.  Adolescence with MD, I can only imagine, complicates things that much more.

Later Sunday afternoon, he came out to the patio where I sat, bundled in my winter coat and blanket, reading a novel.  Yay for Mother’s Day leisure reading for fun under a warm(ish) spring sun!  He came out to tell me that he thought I was weird too.

“Oh, what makes me weird?”

“Well,  your BNL obsession for one thing.”

This was neither the time nor place to discuss the semantic distinction between obsession and concentrated hobby, so I let it go.  Instead I replied with something like, “Yeah, most moms don’t chase their favorite band across the Midwest.”

“AND Canada, you actually went to Canada.  That’s weird.”

“Yes it is, son. Tell me now one thing about me that you love.”

“You take care of us.  You do all the responsibilities around the house, and you say you love us like every day.”

“I do love you, big kid,”

“I know, mom.  Love you too.”

*end scene*

I’ll take being viewed as weird in exchange for an unprompted “I love you” any day.  I guess my Mother’s Day gift was the gift of gab from that one.  He’s typically short on effusive expression, sticking with the seventh grade one-to-two word answer grunt script.


He wrote me a note, which included an acrostic poem using Mother, very much prompted, this time by one of his teachers.  Trustworthy and Heroic he wrote.  I’ll take it.

 

 

 

My Playlist For Him

I’m pleased and then some to report that Son Number One did not sully the charter bus lavatory en route to D.C.  No, no, I received a text from the boy Sunday evening from somewhere in Pennsylvania telling me “an eighth grader locked himself in the bathroom.  LOL.  LMAO.”  You text LMAO to your mom, kid??  It’s OK.  Here’s how I responded, because I’m classy like that.  

Mother of the Year applications are out and my fingers crossed, because 2017 is MY YEAR, yo.  I love Bitmojis, but I feel that my Bitmoji is much cuter than I am in real life, and I’d hate for anyone to think I hold myself in such high regard.  I assiduously avoided using Bitmoji Wendy for months for that reason. Yes, that is entirely true, and yes, I have given it that degree of contemplation.  I need a life.

I’m obsessed with a new song, well, a new-to-me song.  If you have a son you adore and a spouse you love to the moon and stars and back, listen to Donovan Woods’ What They Mean.  I cried, literally cried the first 43 times I listened to it.  It’s sweet, and will make you fall in love with your son the same way you did the first time ever you heard his tiny heart beat through that monitor.  I saw Donovan Woods last month with my little one sitting next to me.  It was the first time I’d heard this beautiful little 3-act story set to music, and with my little guy right there next to me, my eyes leaked.  With my big kid gone this week, I’ve been slightly sentimental, just slightly. . .  Just listen to this. *sigh*

What They Mean will lead the “My Kid Is Gone For Five Days On His Class Trip And I’m Feeling A Bit Too Sentimental This Week Because Of It” playlist.  Gotta work on the title, but I have KILLER tracks.

Next up is Blue Oyster Cult (see how I avoided the umlauts?) Don’t Fear the Reaper. Because “More Cowbell.”  After weeping my way through Track 1, we need to get this party started. And my kid loves the Christopher Walken/Will Ferrell SNL skit, so I’m all smiles now thinking about it.  It’s never not funny. Watch it here. You’ll laugh, I promise.  I got a fevah, and the only prescription is more cowbell.  Jimmy Fallon loses it, and there’s little that makes me laugh harder than someone trying to suppress theirs.

Thoroughly charming, but not as straight-up comical as BOC is Allergies.  Barenaked Ladies’ album Snacktime! saved my life when the kids were small.  It was released at the moment I was as near to pulling out all my hair from mega-doses of The Wiggles, Greg & Steve, and anything airing on the Disney Jr. cable network as I would approach.  It was just yesterday that I was driving the boys to day care in our superbadass white Chrysler Town & Country listening to that album, wasn’t it? Maybe last week or so??  It’s clever, and because my big kid had allergies, this song got a lot of play.  So did Crazy ABCs.  J for jalapeno, good in either corn or flour. . . tortillas. . .  nice rhyme.

When we brought home Jack Johnson’s album of songs to accompany the movie Curious George, my son inserted the CD, perched himself atop our coffee table and strummed his acoustic guitar along with the soundtrack.  He listened to the album, start to finish, “playing” along in its entirety.  It opened with Upside Down, and I still enjoy that song as it evokes memories of my little blondie whose eyes were still blue.  (They’re green now.)

Doesn’t every kid go through their emo-80s phase between the ages of 4-5?  Just mine?  For a spell, he was heavy into The Cure, and his favorite song was A Forest.  I must’ve heard that song 300 times that summer.  He is his mother’s child, and if a song owns you, you listen.  Often.  Always.  You don’t get to pick, you just listen because you’re under its spell.

We interrupt this semi-cohesive playlist to wish you a Merry Christmas.  I’d be remiss if I omitted these two songs simply because they’re Christmas songs, and since it’s my I miss my kid playlist, I get to pick.  He loved It’s Christmastime Again by Tom Petty and giggled like a little elf over Donde Esta Santa Claus? by Straight No Chaser.  Ho, ho, ho, mamasita!

Lost Highway and Love’s The Only Rule by Bon Jovi come next.  Bon Jovi played a critical role in my coming of age back in the mid-late 80s, and I just loved that my child loved their music too.  Once my little stinker graduated from acoustic to electric guitar, he hammered out the solos in these tunes.  And by hammered out I mean strummed along, definitely not plugged in.  He has as much guitar knowledge now as he did then (exactly none), but what he lacked in musicianship, he made up for with passion and commitment known only to obsessive 4-year-olds.

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Globetrot from the Silverball album is next.  This one is for me alone because, hello?  Road trip.  Globe trotting.  And also because it contains one of my favorite wrong lyrics of all time: I want gravy on satisfaction.  Still think mine works better.  Sorry, Ed.

Amsterdam by Imagine Dragons transitions us toward the home stretch here.  We both love the song, and we laughed in horror at an Impractical Jokers punishment where two of the guys had to improvise a concert opening up for Imagine Dragons.  Dressed like 80s hair band rejects.  It was naked humiliation, OK, spandex humiliation, in front of an audience of 14,000 rain-soaked and pissed off fans.  They opened by thanking the Imagination Dragons for the opening slot, and were soundly booed.  We laughed til it hurt, and we still almost always refer to the band as Imagination Dragons.

Did I Say That Out Loud? Because it’s greater than gravity.  Love.

Last up is Take Us Home by Alan Doyle.  I love this song, and every time my big kid asks to pick songs when we’re driving he chooses it because he knows I love it and I love that.

I miss my boy is all.

Collective Nouns

Listening to my iPod on the way home from Cincinnati Sunday night, the Air France CRJ200 is building up to its 180 or so mph needed to take flight, and the lyrics from Odds Are “crashed in an airplane” come blasting through my earbuds.  Not cool, universe.  I used that song as my mantra while driving to my kid’s first-ever neurology appointment, and it was wildly unsuccessful in staving off the MD diagnosis.  It did however shield me from a fiery crash en route home from my concert bender Sunday, so I live to write another day. Go, me!

At Saturday night’s show, my fave singer on the planet asked the audience who had an interest in collective nouns, and dork me was like, “oh yeah, totally me.”  So now this is on my mind since Saturday.  All the time.  Who contemplates collective nouns?  Thanks a bunch, Ed.

I began this post titled, Down, Really Down, Up, Holy Crap UP, And Then Down Again.  It was a little busy, I’ll grant.  But now that I’m laser-focused on flocks, pods, murders, congresses, and litters, I am searching for a word to capture all of the emotions running laps in my brain these last few months.  What do you call multiple accordions?  Ah, you had to be there.  Nevermind.

Down

I pretty well covered that in my previous post, and you know how I hate beating a dead horse.  Ahem.  Maybe I’m not really depressed.  I think after last weekend, I’m not actually depressed. Definitely not.  I had to retitle this post because focusing on feeling low isn’t even needed, so let’s all just pretend this never happened, m’kay?

Really Down

At my son’s occupational therapy appointment last week, his therapist suggested it was time for a splint.  Because of the muscle contracture in one of his wrists, she came to believe that splinting his wrist will be one way to maintain some range of motion in a passive way.  It signaled for me the end of an era.  My son has in the two years since his diagnosis begun to need equipment for MD.  Damn that was a quick couple orbits around the sun.  I know I was all leaky eyes when the OT was explaining this to me, and as I in turn tried to clarify what I understood for my son.  Damn.  I ferried him back to school and began the ugly cry in the car the second he passed through the doors.  The ugly cry persisted into my workplace, accompanied by a serious inability/lack of desire to communicate.  Poor Valerie and Jill had to witness the mascara trails directly, and suffer through the sniffing between my commentary of, “I know it could be worse, someone always has it worse.  It’s just that, well, compared to not having MD at all, having MD fucking sucks.”  Having an allied health professional refer to your child’s hand as “well not deformed, but you can see how it’s different” felt like sucker punch.  It’s an honest assessment, but that doesn’t mean it’s not painful.

Up

I met my Muscle Walk fundraising goal.  Which is freaking amazing.  So most definitely trending up.  But not HOLY CRAP up yet.  Keep reading.

 

HOLY CRAP UP!

If you’re new here, you may not know that last year our MDA Muscle Walk team received a $1000 anonymous donation.  Not knowing the source of this incredible magnanimity has eaten me up since last spring.  I’ve had a few moments of absolute clarity: I KNOW who it is!  It’s . . .  only to have been disproven.  I have as much idea now as I did then, which is exactly not one teensy trace of a clue.

I receive an email from the lovely Elizabeth at our MDA chapter, asking how I “managed to pull this off.”  Because I was occupied weighing the am I depressed or am I not? scales, sicker than I’ve felt in some time, and wanting only to spend time with my dear Netflix friends, Lorelai and Rory Gilmore of late, I hadn’t looked often at our Muscle Walk team page.  Holy crap.  HOLY CRAP!!  One thousand dollars.  To our team.  What?  Who?  Why us???

True charity is shown when someone offers something remarkable, genuinely life-altering, y’all, and asks nothing in return, not even acknowledgement.  I love you, Anonymous.  I have no less affection for any of our team supporters, but in my circle, a thousand dollars is a big chunk of change.  Someone saw to it that one thousand dollars got directed to me.  To ME!  To us.  I said this last year, and I’ll implore you again:  please tell me who you are.  I’ll keep it between us, I promise.  Please let me thank you properly.  Although, seriously?  How could I possibly do this right?  The mystery is a delight and a fright at once.  What if I was a complete crab the last time we met?  What if I seemed unappreciative in some way?  Know that I’m grateful beyond words.  I tried last year and failed, and I’m failing again to put it in print.  Thank you.

Remember what I always say, kids: Second row is not the front row.  THIS is where you want to be standing to see your favorite band perform.  Front and center two nights in a row was quite a coup.  For the record, the band is of course HAPPY to see us, not scared as some of you have suggested.  Well, they’re probably happy anyway.  Wouldn’t you want to see smiling faces hanging on your every note down in front?

I want to tell you about my weekend.  ALL about my weekend.  I could relate every detail, every nuance, every tossed monkey and undergarment (even the one Nikki put on my head Saturday night), but as the song goes, it’s all been done.  It’s etched in my memory and in my heart.  My band performed MY SONG Friday and Saturday evenings, and I swear, my heart was teenage dreamy fluttery the instant Ed hit the first note.  I couldn’t breathe.  And yeah, I’ve heard it live before a handful of times.  I just needed it now.  Tyler gave me a shout-out from the stage at the very end of the evening Friday, and my cheeks still hurt from the hours-long smile that’d been pasted on.  My girls.  My friends.  My band.  My song.  Geez, apparently I have petulant toddler issues. Me, my, mine!  I do understand that pronouns other than “my” exist.  Just not in this context.  Girls, I miss you acutely.  Guys, see you again in May.  I’m sure you’re just as excited to see me as I am to see you.  Wait, what?

Because the odds are that we will probably be all right, I did land safely back in MKE Sunday evening.  And what to my wondering eyes does appear?  The three loves of my life, hanging outside baggage claim, each poised with a bouquet of posies.  Tulips–my flower of choice and a beautiful reminder of renewal and hope.

And plastic spiders.  Because this is what my younger son and I do.  He totally started it, but I totally continued it, and now we wage war nightly over who can deposit the spider more plausibly or more sneakily to try scare the shit out of the other.  Because I am a GOOD MOTHER!  But look at the sweet little note Mr. Spider left me under my pillow.  My baby?  My love for that kid is greater than gravity.

Breaking Even

My original intent was to end on a downer, because that’s how I felt Sunday, as I sat alone in the airport awaiting my return flight.  I love and already missed my #Ladiesladies SO MUCH, but then remembered that going home meant I could see the boys I love and missed SO MUCH.  Sometimes life shakes out a lovely symmetry.  I’m not down.  I can’t maintain holy crap up either, but I’m OK.  I’ll be OK.  What’s the collective noun for people I love?  My tribe?  My family?  My love?  Yes.

Dude, We’re Getting 72.7% Of The Band Back Together

It’s totally normal to wake with jolts of anxiety over a concert, right?  I’m unsettled, like despite my pleas with my favorite band to keep playing as long as is humanly possible (which, thank you, Tyler, you did announce to a crowd of several thousand people last July that you would, we totally heard it!  Oh, and by the by, it’s not like they actually listen to me personally) you just feel something’s not perfectly copacetic with your universe, and what if this is the last time I’ll ever get to see them?  What if I wake up tomorrow and everything has changed?  What if I sleep through my flight?  What if it snows and my flight is canceled?

I’m  watching my dog sleep–it’s 3:38 AM and so should I be sleeping, but the bully named insomnia claimed victory in tonight’s battle. My mutt looks like an angel–peaceful cycles of puppy inhales and exhales, all four paws racing as he chases bunnies in his doggy dreams, and I think I would love nothing more than to kiss his squishy face just above his eyes right now.  Then I remember the terrorist he is in daylight, and question “Who hates their dog?”  Oh yeah, it’s me, I’m that horrible person engaged in a love-hate relationship with her dog.  I love him.  I hate him.  I love him.  Ask me again in two minutes.  What is wrong with me?

The weeks-long, snail’s pace strain of viral and/or bacterial shit pummeling my body into an inert blob of coughing spasms, congestion so entrenched I’ll never enunciate a clear p, m, or b again, strep-ish throat, and other super sexy symptoms loves me bestest.  It will not take its leave.

I have time for neither insomnia nor the modern plague.  You can’t reason with anxiety, and you can’t affect the longevity of your fave band by enveloping them in the bubble wrap of your good wishes. People, it’s show time.


Several weeks back (you can do the math here if you like) I rose to get my coat, and noticed the office countdown wall had been amended extra-special, just for me.  See, we’re educators, so we need things to look forward to more than other worker bees.  My friend Christine once stated, and I quote, “People who don’t hear the phrase bitch-ass motherfucker thrown at them in the workplace don’t need breaks as often as we inner-city teachers do.”  Preach, sister.  Anyway, one of my office mates, Melita, very quietly and much to my giddy delight added this.  I snorted.  My poor office mates tolerate encourage my crazy, and OK, I don’t mind it so much.  I do mind the use of bitch-ass MFs, four-year-olds telling me I get on their nerves, or eight-year-old girls blowing snot rockets on my therapy room floor while “sneakily” giving me the finger.  Like I didn’t see it.  Amateur.

I have this group of friends about whom I’ve written before–my Barenaked Ladies super fan friends, the #Ladiesladies.  Not a day passes that one of us eleven misses reaching out in some way to the group.  The #Ladiesladies are privy to an impressive volume of confidences, pinky sworn to secrecy.  We use our message forum to share our lives–the good, the bad, the ugly.

I’m closer to owning up to what I’ve been tap-dancing around: I may just be tilting a little closer to depressed.  Since my boy’s diagnosis, I’ve acknowledged a range of emotions here in print.  WordPress is much cheaper than therapy, and rereading my history on this platform evidences tremendous personal growth (and I’m not just talking the ten extra pounds–now down to seven, go, me!–of belly floppin’ here).  I’ve intermittently permitted that maybe, possibly, could be I’m depressed, or that I’d consider thinking that maybe I’m depressed during the last two years.  But over the last several months I’ve noticed how I’m not bouncing back like I typically do.  I don’t look forward to things with my customary energy and enthusiasm.  I don’t laugh as inappropriately or loudly as is my norm.  I’m still functional, and still appear mostly Wendyesque, so I don’t feel my malaise rises to the level of clinical significance.  I don’t know.  WordPress is cheaper than therapy, sure, but not quite as interactive or diagnose-y.

My #Ladiesladies probably see it.  They notice when I’m posting and responding less frequently.  We all notice that of each other actually, but no matter what, no matter what! we are there for each other.  They’re some of the first people I told about my son’s diagnosis.  “Hey guys!  How was your Wednesday?  My older son was identified with muscular dystrophy this morning.  I’m the walking dead.”  It actually did go something like that, though I don’t precisely remember.  What I do remember is that they were there.  They’re there when I’m sick or annoyed or worried.  And when I’m joyful or exuberant.  We’ve been together through broken hearts and broken bones–cancer, automobile accidents, the loss of parents and other loved ones, our babies’ first home runs, their dance recitals and choir concerts.  We represent two provinces and seven states–of all the gin joints in all the world, we found each other. To the actual Ladies, our band–these women who hold my hand as I peek over the precipice?  We are friends because of you.  Thank you.

Eleven strong last June, clad in our fuchsia team shirts, a few women asked us about us.  “Can we be in your club?” a woman asked of me outside one of the beer gardens. Someone tweeted, “Help a sister out, #Ladiesladies, I need in.”  “When can I get my shirt?” asked yet another.

You can’t.  And not because we’re some middle school junior bitch clique, no. You can love the band, and you can be their #1 fan in all the world (well you can think you are. . .  Even I am not top five, but really I think it’s because I am simply too broke to make it a full-time job), and I will look forward to seeing you again and again. Fans of our band, not just my inner circle, are good, good people.  It’s a blast to go to shows anyway, but those hugs and time spent at shows with people I’d otherwise never have known?  A gift.  Since my concentrated hobby ramped up to its current level of investment, I’ve asked my husband not to buy me material gifts.  My friends and the shows I attend with them are privilege enough.  He doesn’t get the band thing, but he doesn’t have to.  I do.  And that’s enough.

#Ladiesladies membership cards are worth their weight in platinum and out of print.  You can’t deny the oddest of odds–eleven random people with nothing but a shared musical hobby clicked. Eight of our eleven are making the run this weekend, only 72.7%.  Gonna miss my Amy, Jen, and Katie for sure–love you, friends!  But for the rest of us?  Let’s go, girls.  I need you to keep me strong.

It’s show time. #PlanesTrainsAndAutomobiles

PS–pleaseplaymysongpleaseplaymysongpleaseplaymysongpleaseplaymysongpleaseplaymysong

Kids Who Bring Light To This World

Number One Son was inducted into his school’s chapter of the National Junior Honor Society last December.  Understatement and underenthusiasm being two of his special gifts–he IS a seventh grade boy after all–I knew little of what to expect.  Students were selected based on their grades, there was an application asking for community service and outside interests and activities, and later a confirmation and invitation to the induction ceremony.  This was the sum total of my process knowledge.

It was a bigger deal than expected.  The ceremony itself was solemn, thoughtful.  Middle schoolers carried a gravitas I didn’t know they knew of themselves.  There were formal speeches, candles, blood signatures on parchment (OK, pen on paper), and an oath upon their swearing in.  During the principal’s address at the ceremony’s closing, she spoke to the members, inductees and audience about leadership, about doing the right thing for the greater good.  She spoke of the rancorous presidential campaign and election, and the divisiveness it engendered.  That we were at odds with ourselves, we citizens, and how she saw in these children, a light. These were kids who bring light to this world, she announced.  After a regular day, it can feel burdensome to turn it back around and head back to school for an evening function (although I don’t believe she used the term burdensome; I’m paraphrasing here), but how the light these kids, MINE included, share with the world was uplifting and motivating enough to make returning for an evening function a joy.  You know I had tears in my eyes–it’s how I roll.

Saturday marks exactly two years since the tall one was diagnosed with neuromuscular disease.  I’ve not spent one single day of my life since then not wishing otherwise.  I would do anything, anything!, to make things easier for him.  When we work together on his OT core strengthening exercises, I’d love for him not to look at me and ask how it’s so easy for me to position and move my body the way I do.  When I hold my hand stock still, I’d love for him not to tremor and twitch as he compares.  I’d love to watch him pop up from a seated position and not have to rely on a four-point stance.  Simple movement that unless you’ve experienced injury, is easy, much taken for granted.  I’d love never to hear him slam the piano keyboard in frustration because I JUST DID IT YESTERDAY, WHY CAN’T I PLAY IT NOW??

I crack wise here in these pages, and my posts are not always MD-specific anymore.  I now paint with broader brushstrokes here in my blog–I write not only to rant and vent about muscular dystrophy, but also now to (I think, OK I hope??) entertain.  I will try to take my kids’ school principal’s words to heart and try to share light instead of the bleakness that blanketed me two years ago.

Through my broken brain and fussy keyboard, I’ve shared stories that have actually helped people.  I did something!  I’ve helped raise funds for the MDA; I’ve made people laugh and cry, and I don’t know any better compliment than someone saying, “Hey, I liked what you wrote about (insert any of my random, inappropriate subjects here), can I share your post with my friend/sister/cousin?”  YES!!  I’m never going to win a Pulitzer Prize or be featured in a Top 10 Barenaked Ladies-Parenting-Baseball Mom-Profanity is Fun-Muscular Dystrophy blogs compilation, and that’s OK. I’ve carved out my own little niche here, and it fits perfectly.


By now, y’all know I pretty much make my own rules here.  I mean, cake and margaritas appear in no Emily Post etiquette book or Pinterest wedding board for first anniversaries, and I totally owned that one last year. Why, just today, I received a beautiful cake and touching card from my friend and co-worker Cindy in recognition of the anniversary.  She felt tequila would be inappropriate in the workplace (for the record, I find margaritas always to be correct).  So I move to make the non-traditional second anniversary of my kid having a shitty disease gift a private #Ladiesladies-only Barenaked Ladies concert with obviously, a personal serenade of Did I Say That Out Loud?  Hey, I asked for a cake, and my friend made it happen, so there’s hope!  She remembered a year later, and that’s gotta count for something.  You gotta keep the faith, people!  Not to put too much pressure on you, Cindy, but you nailed Year One’s anniversary gift 363 days in.  So I’ll wait real quiet-like for the concert announcement. I’ll just be over here, ya know, just hangin’ around all patient and stuff.  I violated my no bakery rule, and ate one-fourth of the cake for dinner tonight. Not with. For. Happy anniversary to me. Or something. 

The traditional second anniversary gift is cotton.  So for The Deuce, I’m going to share again the shirt my kid helped design for our MDA Muscle Walk last year.  Yeah, I cried when he developed the text.  Like his NJHS induction ceremony, he held gravitas I wasn’t prepared to meet.

img_2169I swiped a graphic which read A Year Changes You A Lot for my one-year anniversary post. Yeah, it does.  Thank you for rolling with the changes with me here.  I’m such a work in progress. I’ll never celebrate a January 21, though I will try to face it with more strength and light.  Maybe my kid and I have more in common than I thought.  My love for him?  Still, always, greater than gravity.

Oh Yeah

It’s not like I forgot my son has Muscular Dystrophy. I’m not that kind of airhead. I haven’t focused on my son’s disease here too much of late. Maybe some of you are thinking my blog has lost a bit of its focus. It has.  But come on, you know me well enough by now to know that I have but a passing acquaintance with the beaten path.  Plus, the fact of the matter is that writing here has soothed my anguished heart, and distractions are a gift.  My mom heart of blissful unawareness will never be whole again. Ever. But the despair I felt for a good while is subacute these days.  These days I write to amuse and entertain myself, and hopefully one or two of you as well.

They say music soothes the savage beast. So does writing. So I wrote. I write.

And most days, as the kids say, it’s all good, yo.  But then this arrives, and you go, “Well, shit.”

Oh yeah, that’s right. . .  we’re part of the MDA “family” now.  We get these publications now.  We get information from this wonderful organization we hate having the affiliation with.  No, not hate.  Not hate.  You guys, the work they do?  Whoa.

The “I’m writing about whatever thing leaps to mind” these days stops in a flash and I’m transported back to Day One. To the day marking our before and afterAfter, as I’m completing my son’s field trip permission, waiver, insurance and health forms for his class trip to Washington, DC, I have to complete the Illness/Medical Conditions column and the Necessary Accommodations column.  *sigh*  It’s not that I forgot.  Obviously.  It’s that sometimes life forces me to remember consciously and pointedly.

I remember quite distinctly sitting down at our computer to compose my first blog post.  I was terrified.  But I was distracted from my sorry state, and that was good.  Never for a moment did I think I’d title this home away from home anything other than Greater Than Gravity.  It’s a lyric, THE lyric in my favorite song, the line that made my tummy do flips the first time I heard it, the line I once thought and sometimes still do think I’d have tattooed on me somewhere, and the one that can’t suppress my smile when I hear it.  Every time.

I’m a complete geek for my band, not apologetic for that, and only slightly apologetic for hijacking someone else’s words from a sweet little pop love song for my project here.  I had no idea what I was doing when I began here, only slightly clearer an idea nearly two years in, but the words stuck:  Love.  It’s greater than gravity.  When I get mail like I did yesterday, those words are the lifesaver tossed into the choppiest sea of my emotions.  I barely catch hold of that lifesaver, but I got it.  I got it.  And I hang on.

You don’t have to get it for you.  I get it for me.  That’s enough.

 

 

What Are YOU Looking At? And Also It’s My Birthday So Be Nice

I live in a pretty cool part of my city, a neighborhood busy with weekly concerts in the park, monthly art festivals, sports of all sorts–5Ks and .05Ks and the like, beer gardens, food trucks, and street festivals.  It’s a hipster haven, it’s LGBT friendly, it’s fairly liberal, it’s crazy with cool new restaurants, it’s got good schools for families–it’s got a lot going on along all the right trajectories.

Saturday was the Bay View Bash.  It’s a one-day close-down-the-streets four-stage cover band palooza.  Lots of craft vendors and artisans hawk their wares, and there’s more patchouli (eewwww) and street food than you can shake a waffle on a stick at.  Also, beer.  Lots and lots of beer is available, and lots of beer is imbibed. I don’t like beer.  GASP!  How can I hail from Brew City and dislike beer?  I just do. Dislike it, that is.  The smell of beer makes me kinda dry-heavey, and no, it’s not a holdover from having drunk too much beer when I was 22.  The smell of Southern Comfort holds that special place in my colorful history–I wasn’t always the angel I am now, you can probably imagine.  This is not a post about judging people who drink too much.  I do love a well-crafted cocktail, wines of all shades, and would dive into a pool of margaritas and slurp my way out with a straw if such an opportunity presented itself.  I’d be the world’s jerkiest hypocrite if I pretended I’d never previously gotten my sauce on in an overindulgent way.

No, this is a post about judging people who look down at people who appear different.  And by look I mean stare slack-jawed and by stare I mean, “wow, you’re really acting like an asshole.”

I encountered two people in motorized wheelchairs at the Bash.  One individual garnered little attention.  He looked “normal” (yes, quotes intended for there is still no font for my tone of voice), except for the wheelchair.  For a period, we ended up behind this gentleman in traffic as we all wove our way through the throng.  Passersby straight up stopped and stared at him as he traversed the crowd, and I don’t know why it surprised me, but it did.  This dude isn’t the one that’s got me all contemplative though–it’s the other man.  Now I will grant he was not wearing a shirt, and I’m always pro-shirt when it comes to street festivals, so maybe that could be factored into the stares.  But his body was more physically different than the first guy.  Markedly different.  Markedly physically deteriorated; his legs were contracted and his arms moved with considerable, rigid effort.  His head canted to the right and into his chest.

I know what you’re thinking, so stop it!  Wendy, obviously YOU were staring at him as well since you’re such a reliable informant on his physical being.  For a chunk of time, my family was walking behind him, and yes, he stood out.  Yes, I watched him from behind.  I mentally extend sincere apologies to wheelchair users I pass, because now I do think about wheelchairs when I encounter someone in a chair.  I wonder if my son will land in a chair like one of those I see some day–I do actually check out the various chairs’ features–and I wonder if people will stare at my boy.  I wonder if sidewalks and buildings will be accessible for him.  I wonder how he will feel if when people make assumptions about him.

What prompted me to write this was a woman’s (I hope it was booze-infused because I don’t want to live in a world with this level of overt uncouth and unkind) loooooong stare down as she approached from the opposite direction.  The stare would have been enough for me to react negatively to her, but the stare coupled with the SNEER, huff, and shriek of OH MY GAWD to her friend, whipping her head around to continue to stare at his back as they went in opposite directions.  It was awful.  She was awful.  I sincerely hope she was that drunk.  He is a PERSON, you malevolent beast, not an attraction.  Sure he looked different, but I bet he knows that already.  I bet everyone he passes recognizes that too, so probably no one needs that pointed out.

Who knows?  Maybe he did something jerky to her last pass?  Maybe they have history?  Maybe he was a giant ass to her first–people with physical disabilities can be jerks as easily as anyone else.  Maybe I’m making too much of it because I view things through the lens of my son’s future.  Maybe it was the conspicuous absence of the shirt?  Maybe it’s none of my damn business?

Except it is everyone’s business to be kind.  BE NICE, PEOPLE!  Which is a lovely segue into my next topic.  If not for Jenny Lawson’s effing amazing blog, The Bloggess, which you should totally click here and read, I’d never have discovered Wil Wheaton’s blog.  I haven’t read every syllable he’s ever written, but I do enjoy his writing style and perspective on many topics.  I LOVED this message he relayed:  Whenever you can, do something kind for future you.  Read Wil’s full blog post here. It’s much better than what you’re reading now.  I’ll wait til you come back, I promise.

Of course I was reading his post while mindlessly stuffing my face with Doritos (there’s nutritional science and psychology behind why they’re the perfectly perfect engineered snack, people), but the crunch inside my head was so loud, it took awhile to shush sufficiently that I could hear what Wil was saying.  I stopped gorging myself in that instant, and did something future me would appreciate:  I stopped jamming Doritos into my pie-hole.  I also stopped feeling guilty at keeping my  hair appointment.  My husband got called into work second shift today and tomorrow, and I felt like I should stay home to shuttle little one to football practice.  I asked another set of parents to pick up and deliver him, and they did.  There’s much more to come on this subject, but my takeaway was a new twist on a familiar mantra:  be kinder than is necessary–you are your ground zero.

It’s my birthday, so happy birthday to me!  Birthdays are not exactly time for not-resolutions, but it’s always appropriate to take stock and think kind thoughts, right?  And not just for future you, but for right now you too.  Thank you to everyone in my world for starring in the role of being just who I need.  If you made me happy, thank you.  If you made me reflect, thank you.  If you made me want to throat punch you, thank you for the lesson on what I don’t need and/or want.  You are each exactly who you are meant to be in my life, you each fill the space you were meant to inhabit for little old WW.  As is her annual tradition, my friend Nikki occupies (among her many roles in my life) the role of outdoing herself creating personalized, often inappropriate Barenaked Ladies-themed household items.  Apparently the traditional gift for one’s 49th (holy shit you guys, I’m 49 in less than two hours!) birthday is a photo collage blanket of me with my favorite musicians on the planet.  It’s amazing and hilarious–Nikki deemed her effort epic, so please enjoy.  Oh, Nikki, you kill me. You fill that role like no one else in the world possibly could!  #ketchupandmustard ❤️💛

I thought my birthday present from Nikki would be the piece de resistance of birthday swag, but that was until I got home fully blonded-up, just as nature intended.  Epic though my blanket may be, and it IS epic, right, #Ladiesladies?–it’s not this rare glimpse into the psyche of my seventh grader.  His English/Language Arts teacher charged kids to create a poster about something “real” in their lives, and this is what he designed, thus far in draft.  I could barely speak.  The birthday gift my big kid gave me isn’t even meant for me, but the gift of his perspective is more than I can manage tonight.  My hold on acknowledging 49 is tenuous enough, but this?  I can’t speak.  But I don’t need to–he, in a rare and special turn, spoke volumes.  Happy birthday to me.

Wordless Wednesday

Right, like I could pull off wordless. Why communicate without words when 213 will do?  I’m ornery (-ier?) today because mendacity is our kitchen contractor’s unofficial motto. In place of bitching though (because stay tuned, surely there is enough fodder to fuel an upcoming “Lies Our Kitchen Contractor Told” post that at least octuples the 213 words I suggested above and I’m really in no mood for “I told you so”), I’m sharing with you a gift I received yesterday.

It’s Wordless Wednesday in the blogosphere, but I am not wordless; I’m speechless.  This arrived on my doorstep last evening from my friend, Nikki.  She’s been drawing and sketching in response to and/or in avoidance of the hate and crazy perpetrated on social media of late ’cause she’s smart like that.

Have you had something created especially for you?  Not because you commissioned a piece of art, but because a friend thought enough of you to create something spontaneous and unique, because that friend wanted to wrap you up in a hug so tight it would make right everything in your world?  My friend created something quite distinctively me: my song;  greater than gravity for #1 Son; baseball for #2.  She recently referred to me as the friend everyone needs, but that’s not me.  It’s her.  See?

The Jig Is Up

Sometimes it’s good to be me.  How good?  Well, if you must know, read on.  Here are ten good things, ten random-connected really good things about being me this week.

10.  I hope you remember last year’s very important life lesson, ladies and gentlemen:  Second row is not the front row.  Fifteenth row is not even the same freaking zip code, dammit!, but for the Chicago Barenaked Ladies show, the fifteenth was the first row standing.  The crowd sucked, suuuuuucked at Ravinia, but getting a nod from the band acknowledging our awesomeness (maybe a rich interpretation. . .) made the frozen tundra of reserved seating bearable.  I’m sure that’s what they meant though.  Right?

9.  After piloting a 7.5-hour shoulda-been-a-5-hour drive from Chicago to metro Detroit Friday, I and six of my BNL Besties got chauffeured in Nikki’s tank of an SUV to the gig at Pine Knob by my friend Ginger.  Shortly before we arrived at the venue, MY SONG came up on shuffle, and seven other girls sang Did I Say That Out Loud along with me.  I’m not gonna lie, I had tears in my eyes.  Pretty sure that moment will never happen again.  To me, it was magic.

8.  This:  I love these girls.  And these guys.

“We’re the motherfuckin’ #Ladiesladies, y’all.” –Jen Sanders


7.  Having the intellectual wherewithal to say to my favorite performing artist exactly what I meant to say without feeling like I was going to pass out:  Thank you for writing the soundtrack to my life.  I’ll never be able to express my thanks adequately.  Ever.  Also, thanks for helping me shake those last 2-3 pounds.  I always lose a couple pounds before a concert because I get nervous, so yay for that, but I think we can all agree that saying “thanks for helping me lose weight because I can’t eat from nerves” sounds like a peculiar thing to say to famous musicians.

6.  We giggled like schoolgirls until 3:30 AM and awoke way too early with monstrously insufficient sleep.  Still and all, it was the BEST to wake in a different city with a bunch of girls who love my band as much as I do.  After breakfast, Bek and I flopped down on one of the beds, and promised that we’d be doing the same thing until forever.  Still giggling.  “Do you think they know how geeked up we are to meet them?” we asked one another.  Bek feels pretty sure the jig is up.  Any attempt at playing cool around the band, and trying to sound like the mature professionals we are in the real world, evaporates the instant they enter a room.  Please don’t ever stop touring.  Please, guys.  I have never once taken for granted that the band’s meet and greets are a gift to us fans.  It’s a gift you pay for, true, but that they maintain personal contact with their fans speaks volumes about their generosity and human decency.  Even when especially when they’re sassy.  Yes, Tyler, I’m talking to YOU!

5.  Driving home with Amy from Detroit Metro via downtown Chicago.  The Windy City’s metropolitan skyline is simply amazing, well worth seeing, and I drove nearly straight through at freeway speeds.  If you’ve never driven through Chicago, you can’t understand why this is so major.

4.  Arriving home to a houseful of new wall paint.  If you’ve forgotten about my kitchen remodel, well, clearly you don’t live in my house.  It’s chaos, but the progress is becoming more and more visible.  My husband is a superhero!  After working full time, he comes home and works full time in our kitchen.  There’s something kinda hot about a guy who knows his way around power tools.  And  because people ask, no, my husband isn’t a musician.  Weird, right?  He’s the only guy I’ve ever dated in my entire life not to play in a band.  Truth.

3.  Hearing, “Mom, I’m really excited for camp” Sunday morning as my older son and I packed up his gear.  I cried on the spot, and yes, you are picking up on a watery theme for my week.  He was nervous, I could absolutely sense it, but once his bag was zipped, my big kid was good to go.  Me?  Slightly less enthusiastic from the mom perspective, but jacked up for him.  If he’d shown a trace of nerves, I’d have come undone.  (See above for too little sleep and too many hours in the car).

2.  Millions, OK, hundreds of gleeful, geeky messages exchanged Sunday morning about how much the #Ladiesladies loved and missed each other already.  You just can’t know the energy and love our concentrated hobby engenders.  Learning that the live stream of the show was posted on YouTube, and that Nikki and I made the video during Gonna Walk was a fun bonus.  Nikki is super cute, so you should totally watch it.


Videos never fully capture the energy of a live show, but this shows 15,000 fans doing it right.  Suck it, Ravinia!  Nope, still not quite over that. . .  Who freaking shops for dresses during a concert?  That stupid woman in front of me, that’s who, SITTING there all shopping and some shit.  *huff*

1.  Quote of the weekend–upon learning his camp counselor’s name, my big one says, “I like the name Dillan.  It sounds like a name I can trust.”  I cried and whipped out my iPhone to record him verbatim.  We dropped the tall one off at MDA camp, where crowds of volunteers shepherded us through the registration process, nursing check-in, unloading and medical checks.  These people?  Sincerely worthy of the tears I shed.

I miss my big kid.  He’s been gone before at my parents’ place for big slabs of time, but my parents have a phone.  Camp doesn’t allow it, and that’s the way it should be. I know.  I know he’s great.  I know he’s having the best time–he couldn’t wait to shoo us back to the car Sunday, and immediately got to telling Dillan about his Saturday daytrip to Chicago as he booted a soccer ball around.  I miss hearing, “Hey, Mom” 743 times a day, but as the song goes, absence makes the heart grow fungus.  I miss my kid.  I do.  I miss my girls.  I do.

My co-worker Christine left this for my return to work Monday.  PBNLS is a thing, people.  The struggle is real.

It’s The Most Wonderful Time Of The Year

No, not that one.  My most wonderful time of the year is waaaaay more festive, y’all.  It’s better than Christmas, my birthday and my own personal holiday all bundled into one for me. It’s the Last Summer on Earth. Again.  Turns out that ancient Mayan calendar?  Not so much.

I’m an extremely time-aware person, but this snuck up on me.  The past two months have seen my calendar filled with commitments 4-7 nights per week, and I’m what you might call at the end of my rope, with a weak-ass grip at that. I am trying to keep my good fortune at the forefront of my consciousness as each of these myriad activities is 1) something I sought for my family or myself, and 2) something that reflects scratch-battled hard work and/or an innate gift not to be wasted.

My band went on tour again Friday.  They go on tour and I go on tour–my tour is considerably shorter–3 or 4 to their 30-something or so shows, and I don’t get in front of an audience (but that’s only because I’m not a famous musician or songwriter, and I don’t play guitar, bass or drums, and it would be weird standing up there just kinda looking happy, but dang, I wish I had a talent that could land me there).  Nope, I get behind the wheel of my mobile concert stage Ford Edge, and tour the Midwest.  For the first time in our three year history, every one of the #Ladiesladies will be at one show together.  People ask how we met, and it sounds insane, meeting via the internet sounds insane, right?  It’s not.  Maybe it would have seemed kinda off center to 2012-era Wendy, but not now, with our shared history.  I clicked with my friends immediately.  I get to spend a couple days in Chicago and Detroit with the only other group on the planet who doesn’t think my musical obsession is weird. They also don’t even think it’s an obsession–again, for those of you new here, it’s a concentrated hobby.  Sounds more gentle and reasonable, can I get an ‘amen-ah’?

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The last time I road tripped to meet up with my tribe, we counted it down to the second.  We had a detailed itinerary involving multi-state and international travel.  There was cake, and snacks and beverage representing each of our hometown’s specialities to be shared.

This time?  I’m so overwhelmed with work, baseball, MDA camp preparations, and that darn (and fabulous) kitchen renovation that this LSOE is, holy crap, THIS WEEK!!  I haven’t done a thing.  I don’t even have a yellow shirt to wear (sorry, Ketchup, next time!), and I haven’t even been able to keep up on our message threads.  OK, sure you’re thinking, well Wendy, you seem to have found the time to log a little something here on your stupid blog, you could at the very least read a message or pack a bag or something.

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Found this beauty on laurieschechter.tumblr.com

I’m so excited to see my girls, it nearly overshadows the anticipation of seeing my Ladies.  Did I say that out loud?  (You’ll get it if you know me. . .).

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This.  All of the above.

I’m afraid though that I am going to be the odd one out this time.  I’m laser-focused on the fact that my kid is going to his first sleep-away camp, and *clears throat* he’s going solely because he has muscular dystrophy.  There aren’t enough o’s in soooooooooo to describe how so very excited I am for him to have this opportunity, but (broken record moment) I wish he didn’t have to have it.  Instead of ordering a fun outfit to wear to the show, I’m online ordering my son a Harley-Davidson t-shirt because there’s a Harley night at camp and his prep notes said to wear Harley gear.  I told him he could wear orange and black, which I felt would probably cover the bases.  He insisted on the real deal.  We are not Harley folks, but how could I say no to him?  He wanted to fit in, and instead of bursting out in tears, I hit up Amazon Prime.  BTW, thanks to the generous Harley riders taking the campers out for their spins.  It’s a really terrific thing you’re doing.

Baseball has been a four-night-per-week thing for the last several months, and I’m thrilled for my son.  He has some super teammates whose parents I genuinely enjoy.  That’s a gift.  They’re not a highly competitive bunch in the way of the wins and losses, and I tell myself there is something like grace or class one develops when one learns to lose decently.  At this weekend’s tournament, my little guy pitched the last three innings, and had to hold the opponent back from a top-of-6 rally.  He did and they did.  And there’s nobody better on the bases in the bottom of 6 than his teammate Flash, who stole home for the winning run.  After the game, my son threw himself around me, and began to cry.  “Are you crying because you didn’t hit last ups?” I asked him.  Head shake no.  “Are you crying because you won?”  He nodded furiously and hugged me harder.  You can be a graceful loser and still cry 10-year-old tears of joy when you win.  It’s OK.

After the baseball tournament, instead of stalking Twitter for Barenaked Ladies tour updates and set lists, I spent my afternoon writing my older son letters to be delivered to him at camp.  More to come on that later.  It’s an exercise in anachronism of a sort–writing letters today to be sent with him to camp next Sunday and given to him throughout his week away.  I’m just out of time.  Out of time in the way everyone thinks, but also out of time/sync–I’m not present these days.  I haven’t savored the lead-up to my concerts.  I have worried about my son’s camp.  I have worried about baseball and MDA camp and piano lessons and band concerts and work presentations and parent meetings and everything else under the sun.  I’ve felt guilt at leaving my kid days before his big camp send-off (though I WILL be home before we deliver him to Camp Wonderland) and at every other thing I have done less well than I’d like to.  But now?

Now I think I shall grant myself permission to have some fun.  I’m going to give in to the new live album.  I’m going to let the road trip begin to take over reason, replace it with abandon, and sing and dance my ass off.  I’m going to hug my friends, cry my own tears of joy, and tears of sadness when it’s over.  But it ain’t over, ladies and gentlemen, nuh-uh.  This weekend is exactly what I need.  I’m in charge of margaritas.  Has there ever been a more fun sentence to write than that??  PS–Tyler, Jim, Kevin, Ed–I know you’re dying to play When I Fall Thursday and maybe Friday too, aren’t you?  #Ladiesladies, here we go!