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.

 

Golden

It’s my big kid’s golden birthday. He’s fourteen on the 14th.  He hung on to life on the inside nine days longer than expected, that giant baby did. I was a house, no, I was an estate by the time he decided to make his way. He was worth every second of that extra nine days’ wait. Happy birthday, my son.

You’ve had quite a run here these last few weeks. In no other place I know, eighth grade students face the immense pressure of getting into a “good” high school.  You vie for “golden tickets” for open houses at the “good” schools, complete online applications, audition, request letters of recommendation, draft essays, and wait in a block-long line to get a space for the formal test.  I don’t recall having done this much groundwork for university matriculation, and I got a really sweet scholarship. The pressures you and your classmates face should be found only in a dystopian work of fiction.  Growing up anywhere else in the world, you’d go to the school nearest your home in the city you live.

You admitted nerves, but you conquered them with persistence. You felt unprepared, but you proved that showing up is half the battle.  I’m proud of you.

Now you wait.  Letters of acceptance arrive in December, and our family’s future hinges on what you read in that mailing.  (Friends, if you’re reading this thinking I’m chock full o’ my usual hyperbole, know that in this case I speak the level truth.) Number 1 and Number 2 choices are solid–I know you’ve got the heart of Husky, but you could be a General too, and that would be OK.   But you were under-impressed by the Owls, and choices four and five simply aren’t choices.  One and two mean we stay; any other return means we go.  We move to another city.  That’s OK.  We’re prepared to do whatever we need to do for you and your brother.

There are days I don’t know what I want to see revealed in that acceptance letter (OK, I WANT choice #1).  I’ve never in my adult live envisioned living outside the city, but would the ‘burbs really be so bad?  Not bad, but not me.  Not us.  Maybe they’ll fit perfectly.  Maybe not.

Wait, this is about you, YOU my boy.  It’s your birthday.  I’ve wondered what to get you, what kind of material gift to give you.  You give away very little, but you let me in on a little secret Monday, and I feel though it’s your birthday,  I received a little becoming-a-mom-day gift from you, and you don’t even know it.

I nag on ya for spending all this time staring at your phone, earbuds ever-present to the point of appearing surgically implanted.  You’re a YouTube zombie–you don’t even hear me when I yell at the top of my lungs for you (and I’m no delicate little flower), and no matter how many times I crab at ya for blasting your music too loud, you don’t seem to heed the lesson.  Neither did I.  Which explains a lot about why my hearing thresholds are what they are today, and though I wish to serve as your cautionary tale, I’ve come to realize that you do have a little bit of your mom’s heart beating inside your own.

Eighth grade me was not skinny or popular or beautiful.  It shouldn’t matter when you’re fourteen, but it does.  I was not confident.  Or cool.  I was hiding inside my room in the dark, trying to figure out just what the hell I was. I was first chair in band.  I was the middle school salutatorian.  I was reliable and dependable. I was the fastest girl sprinter in my middle school. I was everybody’s friend, which was freaking awesome. I got to do a lot, I guess, but I didn’t believe any of that at the time.  I felt never good enough.  I mistrusted every accomplishment as dumb luck, and deflected any positive comment cast my way.

Middle school is a labyrinth of all the unkindest cuts, and I bled.  Wound care was administered in my headphones.  Music was my solace.  LOUD music, the bass thumping so loud that the headphones quite literally bounced off my head.  So loud you could sing along from downstairs.  Lying on my bedroom floor, wrecking the shit out of my hearing despite your grandparents’ strongest protestations, I found me.

And I think maybe you have found yourself.  You’re finding yourself anyway.

I learned this week that all your time isn’t in fact spent watching banal, inane YouTubers riffing video games or opening Pokemon cards.  You’re listening.  You’re picking songs I loved when I was your age when the ancient version of your earbuds (my headphones) were eternally attached around my head.  You love the band Rush.  You hear Subdivisions and interpret the music video for me.  You sing all the right words, just like I do.  You pull meaning from those song lyrics, and maybe the view is a little middle schoolish, but that’s OK because you’re a middle schooler–you’re not supposed to feel like you’re applying for college this year–you’re fourteen.  You get why the guitar solo in Limelight rocks so hard.  You mention that Geddy Lee’s bass inspires you, and until this week, I’d never heard you utter the word inspire.

You used to write, can you recall?  You created notebooks upon notebooks of beginnings.  Your author’s dreams were grandiose, you had designs on writing the next great American (elementary school) novel.  You began hundreds of tales, characters based not-so-loosely on yourself and your friends, and other literary characters you enjoyed.  You haven’t created a great body of work in a while, but now you want to create music.  You wanna make some noise, learn bass lines and play along with your new really old favorite songs.  Guess what you’re getting for your birthday, kid?  Four strings.  Rock. And also roll.

“Dude, we gotta start a band!”


Your birthday fills me with longing–your sweet baby cheeks, your feather light tufts of blonde hair, the corners of your blue eyes, now green, turned up when you smiled. Things were quite simple then–little kids, little problems. . .   Your MD, my “management” of your diagnosis that is, is what made me carve out this outlet, my little creative writing .com of the internet.  However desperately I wish I hadn’t felt that pull to write, I am thankful for this outlet.  What a weird thing to say thank you for.  Thank you, my boy.  Happy Golden Birthday.   Get on that bass and rock, kid. 

Three Little Words

Not those three little words.  I present the three words no baseball mom ever wants to hear: Season. Ending. Injury.

OK, six: Little League Shoulder.

Little League Shoulder is a thing.  In the medical community, it’s scientifically known as proximal humeral epiphyseolysis. Little League Shoulder is caused by repetitive force across the growth plate ball end of the upper arm bone causing it to become irritated and sometimes widen, as you can see below.

 

Not long after opening day, during which he pitched his usual, consistent game, my son casually mentioned that he “threw out his arm” in gym class.  I actually chastised him a bit, scolding that he had no business gunning wiffle balls at such velocity in gym class.  I’m certain of a few things: 1) At 5′ 7″ he is by far the tallest, strongest kid in fifth grade, 2) He’s one of only two kids in his class who play organized ball and have any experience throwing an actual fastball, and 3) It’s something of a dick move to use an arm like his against classmates in a dodgeball-style playground game.  I’m not entirely sure I enlisted the phrase “dick move,” though I can’t exactly rule that out.

Shortly thereafter, he drifts into something of a batting slump.  He lacks the concealed-by-a-smiling-face-fire he’s usually possessed of at the plate, and strikes out a bunch.  A bunch.  A “good” outing maybe was a dink grounder that squeezed through or pop up.  His coach doesn’t have him pitch at that weekend’s tournament, and I’m relieved.  That Sunday, he lifted himself out of the slump by hitting one over the fence.  This is not the rarity it was at age 10, and though he’s eleven, he plays with 12-year-olds, many of whom look like they possibly drove to the games themselves after they shaved that morning.  Still, at age ten, eleven, twelve, a homer clears the dugout and lifts everyone’s, less the opposing pitcher’s, spirits.  It’s special.

He’s called to pitch again.  To say it was hard to watch is generous.  He was awful.  And I mean that with love.  He was awful.  My right-down-the-middle kid was skipping ’em a yard before the plate; he was sending air mail to Saskatchewan; he was walking in as many as hit him or as he hit with a pitch.  He looked befuddled by the lapse and felt like he was letting down his teammates.  He met the same fate the next time he was called to pitch, so thankfully his coach pulled him right quick that evening.  Last year, my kid was his coach’s go-to guy.  He was consistent, reliable, and for ten, quite unflappable.  Now?  He’s crumbling up there, looking to be on verge of tears at every throw.

He’s a giant, so he’s often the first baseman.  It’s a good fit for tall kids who mostly can catch the ball.  But they needed someone on third–a position he used to LOVE–so his coach sends him to play third.  He couldn’t make the throw to first.  Like not even close.  And we’re yelling at him to hustle, to get his head out of his butt, act like he’s got even a vague recollection of having played the game before.

And FINALLY, now like six weeks after the gym class incident, he admits what we surely know: I can’t throw.

So I take him to his pediatrician who has him go through a throwing motion, and she hears and sees the pop.  Not good, she observes.  She hypothesizes it’s a ligament problem, and refers us to sports medicine.  Sure, he can still play.  Give him ibuprofen before his games, slap some ice on afterward, and we’ll see what sports med turns up.  In the two weeks between those two appointments, he plays eleven games.  Plays conservatively, solidly at first base and has probably a .666 batting average during this run.  Maybe even .750.   My baby was en fuego.  He was.  And yeah, I’ll brag on him here because his bat was out of control.  You can’t help but smile when other teams’ coaches yell “back up!” to their outfielders.

Last Sunday he reveals that even tossing the ball around the horn between innings hurts, and his arm feels sore all the time.  *sigh*

I could sense that the sports medicine staff knew exactly what was wrong before he removed his shirt for the start of his functional assessment.  The x-rays confirmed “Little League Shoulder” and the doctor told my kid, “I really hate to be the bad guy here, but this is a season ending injury.   You cannot throw with an overhand motion until I clear you, and we’re looking at about 2-3 months before you’re back at full velocity.”  There were more words than that–the doc was an amiable and pretty cool guy, but that message was both the alpha and the omega.  My kid’s a junior power hitter, but even if you have but a passing acquaintance with baseball, you know that throwing is a rather key element in the game.  So no defense.

They described how physical therapy would play out, which made sense, and that REST and a follow-up x-ray was imperative before he could even begin PT. The doc asked if my son had any questions.  He stewed for a minute, but came back empty.  “You can’t throw” I said.  “You can’t play first even.  You can’t play defense.  Do you understand?”  He nodded that he did, and what did I do?  Yep.  Cried.  But only a little because I’m a badass baseball mom.

They remarked that his scapulae “winged out” a little, and I almost pooped my pants on the spot.  Naturally (well, naturally for crazy me) I jumped straight to FSHD, Facial-Scapular-Humeral Muscular Dystrophy.  Because during the past half hour I received not great news containing the words scapula and humerus.  And you guys?  I can’t even.  So I won’t.  Not today.

I spoke with his coach yesterday morning.  “Do you want the good news or the bad news first?” was my opener.  “Can he still hit?” was his reply, and I swear that kid (he’s 24 I think, and I don’t really think of him as a kid though I could totally be his mom) could not have chosen better words for me in that moment.  It made me laugh and warmed my heart to hear that his coach hoped his highest batting average hitter could keep hitting.  He has a soft spot for my kid, and though I know he’s not supposed to, I love that he does.  Pretty sure he had some notion about the shoulder thing anyway, having pitched through college himself before destroying his own shoulder.  Yeah, he can still hit.  You may have to tape his arm to his side in the dugout, but he’ll be there to finish out the season.

He’s part of a team, and you don’t quit on your team.

Maybe that is the moral of the story here–that you don’t quit on your team, you contribute in the ways you can.  Or maybe it’s that you REALLY have to tune in to your children, because they will NOT admit to the severity of a weakness if they think they might let you down.  Every time until the very end, when we or his coaches asked, my kid said he was fine.  “No, I’m OK” was his refrain until he really wasn’t–and really?  He wasn’t from the first moment he injured his arm. Eleven-year-olds don’t understand that childhood injuries can mean chronic pain as adults–how could they possibly?  Eleven-year-olds want to have fun, they want to hit the ball and cross home plate.

Please, whatever you do to send good will to the world?  Send up a little wish, prayer, intention, ray of light that the moral of the story isn’t that we were given an early sign of another form of neuromuscular disease.  I want to keep our record at .500 here.

 

 

 

But I Don’t Actually Play Tennis

We joined a tennis club.  I can barely stand on two feet these days–I literally fell off my shoes after my concert last Tuesday.  So I can hardly walk like a proper grown-up, let alone play tennis, yet tonight I found myself at New Member night at “our” club.  My life is just chock full o’ twists like that.  I reeked of imposter as my big kid and I entered for the first time as members.  Really?  I’m the kind of person who would be lurking out back by the dumpsters, attempting to catch even the most distant glimpse of how the other side lives.  I’m not on the other side.

My friend Jane is super smart and kind.  She has perhaps an even more wry/dry/sly sense of humor than I do, and outside of my inner circle of fans of my band, she is one of few who understand the celebrity boyfriend phenomenon.  That alone is reason to want to hang out with her all the time, but really that’s just icing on the cake.  And you know I DO love my frosting.  Anyway, Jane.  She DOES play tennis, and so do her husband and her two sons.  At the club.  Last summer she invited the boys and me to an afternoon swim, and began her pitch for us to join the club too.

For all the right wrong reasons, I wanted in.  OK, really the reasons are two:  1) Jane.  Hanging out with her and her family more often, and 2) The Big Reason. My big kid could swim all summer long without having to take a swim test, which he would never pass.  Our community system of public pools requires that each kid each day pass a swim test, granting them access to the deep end.  My kid can’t swim like they require him to (MD, ya know), so any trip to the pool ended in frustration (his) and tears (mine).  No kid who stands 6′ tall wants to dally in the shallows when all the cool kids are in the deep end.

My husband–the one who actually plays tennis–rebuffed my efforts to prod him (us) into joining.  It’s expensive.  We’re broke.  True and true.  My husband–the one who has never paid a bill in the course of our marriage–was worried about the cost.  Legit, but I was all like, “Now you’re paying attention?”  When I calculated the approximate cost of a single baseball bat we purchase for the small one, a season of family fun allowing the big one a chance to find a happy place paled.  It felt like a sound investment to me, but Tom still wasn’t on board.  Jane and her husband have mad persuasion skills, and somehow convinced my hubby to join.  I wasn’t there, but skills, y’all.  Next thing I know, I’m completing application packets, writing big checks, and boom! I’m told my husband is signing me up for social tennis (??).  I was led to believe it was mostly about day drinking, so I was all “IN!”  And soon I’ll be playing social tennis.  Which apparently is a thing.

So the six-footer and I go to the new member night tonight.  We received our membership cards, and were met near the entrance for a tour.  We had a very nice chat with one of the board members and his wife.  We explained that half our family was at a baseball game, so couldn’t make the opening reception.  They asked my big kid if he was into baseball or tennis (a perfectly logical question, no?).  He replied that, no, he wasn’t, that he was really there for the swimming.  They continued to talk with him, talking up tennis lessons, and maybe he could take lessons there?  Again, he denied athletic inclination, saying, “I’m really not a sports guy.”

He’s looking over at the pool, and asks, “Do you need to take a swim test every day here?”  I’m sure to them it seemed an odd inquiry, but I knew precisely where he was going with it.  “Because I have MD, that’s muscular dystrophy, and it’s hard for me to pass a swim test.”

You could have knocked me over with the straw that broke the camel’s back.  Wait, what?  It was the first I’d ever heard him introduce and talk about it in the real world.

They told my kid that at one time, kids had to swim a length of the pool in order to gain access to the diving well, but they weren’t sure that rule was still in place.  The relief on his face was enormous.  After but a few minutes of acquaintance, this woman said to him, and really to me, something like, “I’m sure your mom will be here to make sure you’re never in a place she feels you’d be unsafe.  My son’s a lifeguard here, and all the lifeguards here are great and will keep an eye on you too.”

Hugging a total stranger felt inappropriate, so instead I thanked her, and thanked my lucky stars it was sunny.  Ray-Bans to the rescue, because there’s no crying in tennis.  You know what?  Yeah, there is.

The pool opens tomorrow, and a certain thirteen-year-old wants to swim.  According to my WTF app (What The Forecast), it’s looking like mid-50s/low 60s weather for opening day.  And did you catch the Pig Latin??  This is my kind of smarty-pants app!  Swimming tomorrow feels like a no, kid, but I’ll get you there.  Soon and often. That’s a promise.

 

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.

 

 

 

Take Us Home 

There’s a lyric that goes, “Worked out that I’ve probably made a mistake for everything I’ve done right.”  That would be me, though honestly? probably the scales lean even more toward the mistake side than the side of right.

Fourteen years ago today I did something really right though.  Before we were four, or even three, we were two.


We got serious quickly, Tom and me.  I can remember as if it were last week, standing in the hallway at his old house saying to him that I hoped we would be lucky enough to have kids, specifically to have boys, because the world needed more solid, decent men like him in it. That I couldn’t wait to make us a party of three.  I was wearing my denim bib shortalls, a red tee underneath, and my pink “Life is Good” baseball cap (it was sixteen years ago, you can check your fashion files–it’s all good, yo).

I didn’t have to wait long for that at all.  Sometimes dreams do come true.

At alternate turns, reality surpasses anything you could dream in your wildest imaginings.  You never dream what fourteen years down the road looks like.  You don’t dream that your kitchen window would remain uncased nearly a year after the kitchen remodel was “done.”  You don’t dream of cleaning up the vomit your dopey rescue dog launched after he destroyed the carpeting back onto that same now un-carpeted spot.  You don’t dream of seeing your spouse randomly in passing most nights between the shuffle of piano lessons, school activities, doctor appointments and baseball practices (and with your vision failing at every turn, you barely actually see anything anymore!).  You surely don’t dream that your son gets tagged with a progressive, neurological disease, and you never dream that you become a reluctant advocate and fundraiser for MD, but you manage to help raise over $5,000.

But now?  I couldn’t dream of any other life but this one (minus the dog vomit part, obviously, and the MD which still, yeah).

You do dream that your children become productive stewards unto the world, and you help them get there through volunteerism, service, and kindness. Check. You do dream that you can send your kid on his big class trip, and that he returns a changed young man.  Check.  You do dream that your kid who loves sports of all sorts blasts another homer over the fence, and that he is humble about that feat when his cleats return to stomp on home plate.  Check.  You dream that you have enough to give your children more than you believed you had at that same age.  You float fuzzy visions that you’re happy, whatever happy means to you at the time.  And you are.

You find just the right lyrics to capture how you feel on your fourteenth wedding anniversary:

We’re forever, you and me.  The sun will show us where to go.  Love will give us heart and soul, and take us home.

Home. Happy Anniversary to us.

#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.

A Teenager

Thirteen years ago at this moment I was in hard labor.  Hard.  My husband was sleeping because he was “really tired.”  He actually said those words,  you guys!  Still not over it, but it did provide a story I can, and sometimes do, hold over him.  And we laugh about it now, as he appropriately smirks, shakes and mock hangs his head.  It’s all good, y’all.  Look what we got for that labor:  A teenager!  (not the dog)

Happy 1-3 to my firstborn.  You were so worth the nine days’ wait past your due date.  I sometimes miss your gooey baby smile and gentle toddler ways.  I miss your soft, blonde baby head, your then-blue eyes sparkling at me when I was the center of your world.  I miss the cute toddler things you would say as you developed command of language–“Nice to coming!” (a cute mashup of nice to meet you and thanks for coming) or “Mama, pick me down” (well, what else would be the opposite of pick me up?)  And I miss thinking you’d grow out of that clumsy gait; I miss waiting for you to grow into your muscles.  Now we know.

I’ll never not hate that you have this stupid disease, but am grateful to have connected with many lovely humans in the blogosphere because of it.  Because of MD, you good people around the globe wish him well.  Because of MD, I found a voice here, and while I wish I never needed to find that voice, well, here you are listening.  I thank you.  Because of MD, he has the opportunity for summer camp.  It really was his best week of the year.

But hear me, muscular dystrophy, I am NOT grateful for you.  You suck.  You’re a mean, terrible, hurtful bully, and I despise you, even though that sounds middle school-y.  When I reflect on my thirteen years as a mother, I lack capacity to relate the hundreds and thousands of glad-hearted lessons I’ve learned.  Sure, I miss blissful unawareness, but being my kid’s mom has brought joy into my life that I’d never know were I not his parent.

I would love to post a beautifully-worded summary of my year-and-three-quarters as a mother whose child has muscular dystrophy, something profound and meaningful, maybe inspirational for others in my shoes.  Something perfect that everyone would hold up and proclaim:  THIS.

I can’t.  But I can say this:  Happy birthday, son.  I love you.  Like crazy.  It’s your birthday, but it’s my becoming a mom day, so for thirteen years the gift has been mine.

‘Twas the Night Before

‘Twas the night before the first day of school, and all through the house, not a creature was stirring.  Know why not?  Because they’re ready to go back to school.  And that is without me prompting them with leading questions.  I’m happy to say the kids are ready.  Me?  Not so much.  The boys have negotiated “better” bedtimes (or so they think, but really, do they not really know who’s in charge?), and I’m staying up only as late as it takes me to finish here.  They’re finishing up their evening routines right now–brushing teeth, washing up, selecting their clothes for tomorrow–and I hear this deep voice booming from above me.  Surely this can’t be my son.  Surely this voice cannot belong to my 9 pound, 8 ounce, 22-1/2 inch long newborn whose first day of K4 was just last week?

I spoke with my big kid’s home base teacher at the open house last night about his MD.  It’s such a weird way to lead, but it’s got to be addressed.  “Hi, I’m Wendy.  You know my kid has MD, right?”  She posed a few specific questions about his needs, and even offered up a suggestion I’d never considered.  He’s anxious like I am sometimes when the crunch of time seems to be more a CHOMP! than a crunch.  When he tries to move quickly in response, sometimes his fingers respond in concert with his intent, and sometimes they sorta give him the middle finger all on their own.  He drops things in his haste, and then his locker contents flow and/or spew from his locker to the floor.  The Mt. Saint Mauna Loa OMG I’m Gonna Be Late! of a locker volcanic eruption can be prevented (usually) with the simple addition of a few seconds.  It occurred to me just now that I didn’t ensure he’s been assigned a top locker, and my stomach hurts over it.  Epic fail, mom.  Nice one.  Please let the alphabetical order wizards work so that he gets a top locker.  Pleeeeeeease?  He’s 5′ 10″ so even without a disease that renders him slower to maneuver, a bottom locker would be ruinous.

My son and I had a series of brief, but good talks (for reals I mean that this time) about seventh grade this week.  He asked why I thought it was so hard for kids, and I explained as best I could about how evolving adolescent bodies make evolving adolescent minds do stupid stuff.

He asked about swearing, because ALL of his friends swear don’t you know?, and he wants to too.  I told him I wouldn’t command him not to curse, but I took a line from a supervisor with whom I work whose words stuck with me so much I wrote them down for future reference.  And here I am:  future mom.  I told him that profanity makes ignorance audible.  I got the eyes up and to his right questioning look from him, and we discussed what that means.  I also straight up told him I’m a terrible potty mouth, and no role model in this department.  His two word reply laid me out:  I know.

He actually admitted he had a crush on a girl, but alas, thinks he’s not super crushing on her anymore. That’s OK, I told him–there will be others.  Again with the brevity:  I know.

One of his good friends has moved to another school, news we learned only yesterday.  I’m so sad at his departure, but my big kid handled the news better than I’d hoped.  His friend got a phone and wants to text with my kid, but my child doesn’t have a cell phone yet.  Good thing his birthday’s next month.  We’re jumping on that bandwagon a wee bit earlier than we’d have otherwise, but we’re OK with the decision.  Which actually hasn’t happened yet, so I’ll have plenty of time to second and fifty-second guess myself.  He’s already lost an iPod.  But at least he hasn’t gnawed away at the rung of my dining room chair like his dog did this evening.  My dog is trying to murder me.  That feels like a blog title now that I see it in print.  Stay tuned.

Big Kid, 1; New Dog, 0; My sanity, -373722736189.

As for my school readiness?  I’d totally bomb my standardized test were there one I was forced to take tomorrow.  It’s my 45th first day of school–kindergarten through high school, college, graduate school for my master’s degree, and 26 years working in the public school system–and my 4,779th day of working in my district.  Friday is our opening large group meeting, and I’m closing the meeting with our monthly thought–a message meant to get our 181 speech paths reflecting on their practice or maybe just a happy or thought-provoking idea to take away.  I haven’t quite pieced it all together, but its focus is on happy.  Not work-specific happy, just happy.  I’ll let you know if I kill or crash and burn.  Happy first day of school, Wisconsin.

 

So Where Do You Keep Your Extra Toilet?

Because we are poor planners, insane? overachievers?  All and/or none of the above??  Because we are in the midst of home renovations, we find ourselves with very little in the places you’d expect things to be.  Dishwasher?  Tucked away in a cloud of dust in the corner of our dining room with a snippet of pink fiberglas insulation atop.


Where else would it go?  Range and coffee makers?  Obviously they’re in the basement.  The Sawzall is also in the dining room, and two ladders, 6 empty paint cans, and two buckets of drywall compound are in the otherwise barren kitchen.  But my favorite misplaced item sits at the foot of my bed.

You didn’t believe me, did you?  You thought I was exaggerating, right?  I opted not to edit this photo because there’s no way to polish and pretty this up. Plus, now you can see that the kids get their laundry skills from their dad.


Yes, I have an empty, umplumbed toilet NEXT TO MY BED.  And not in the “Awesome!  I don’t have as long to go for those wake you up in middle of the night potty needs” way.  No, no.  See, it’s not connected to anything, and really, it would be pretty weird to have a random toilet just kinda out there in the middle of a room, don’t you think?

I have a toilet at the foot of my bed because it goes with the new bathroom vanity, which sits against the wall across from my bed.  I am not making this up.


Getting back to the beginning here, we are the wackiest kinds of home remodelers.  You move into a new/old house, determined to gut your sunflowery kitchen within the first year, except you’re pregnant with your second child when you move in, and your toddler is exploring his two-ness in great depth and with studied intensity.  Instead you do the quick fixes–paint the living and dining rooms because dirty, white walls?  Blah.  Boring walls with mauve-painted crown molding?  What the what??  Then you (and by “you” here I mean my husband because I can’t even work a damn screw gun.  I can tear shit out, but cannot put thing one back together) engineer and install a family room in the basement.  Next you replumb everything from the basement up because you need to redo the main bathroom, but you can’t live in a home without a means to bathe, so you add a master bath in your bedroom.  No, this is not the first time I’ve had a toilet in the middle of my boudoir.  Years later, voila!   (Look at me all speaking French and stuff here)  You have a second shower, and now you can get crackin’ on that main bathroom.  Hold, up!  How about instead of that bathroom, you gut and re-tile the powder room off the kitchen?  But hey fellas?  Don’t tell your wife you’ve completely gutted it, or even thought of gutting it until she’s home from a week with the kids at her brother’s.  That’s the best plan.

Life has a way of mucking up our best laid plans, and I’m flexible like that.  Plus I like to laugh, and my life is filled with high hilarity.  No, really, I actually mean that one–I do like to laugh because why woudn’t you?  Life’s too short for seriousness 24/7.  The only reason we finally dove into the kitchen reno was that our downstairs fridge went.  Remember old Harvest Gold?  Goldie’s demise led to my insistence on a kitchen reno. If you need a road map to financial stability, a full on kitchen tear out and custom design is super financially savvy.  It’s obviously way smarter than buying a new fridge for the actual kitchen and moving the existing one downstairs for the fun stuff and extras that don’t fit.  Go, Wendy.  Ah heck, it was legitimately time, and we’ll never have enough money to do it anyway.  Might as well do it now, because in a year it’ll be yet another couple grand, right?   Exactly.

So I have a random toidy in my bedroom because the main bathroom is finally tiled, painted and the tub reglazed.  It’s really quite lovely.  I must say, Tom and I have exceptional taste in tile and colors (and thanks to the dude at The Tile Shop, we have a nice low/no-skid slate floor to account for my big kid’s instability).   All that’s lacking is the finish plumbing.

He’s coming back when the kitchen is ready to be rigged up, and oh, THANK YOU VERY MUCH stupid kitchen contractor for pushing our start date back another week.  If you can’t tell that’s sarcasm there, we really need to talk, friends.  I get that we’re not one of their $100K jobs, but you know what happens to nice guys like us.  Wait, that’s not helping.  I’ve got to sit down and think about this–If only I had a seat in my bedroom just to be and to ponder.  Hmmmm.

Best.  Twelve.  Years.  Ever.

This post was brought to you by the 2nd Annual Hitters Baseball Tournament at Infinity Fields.  We’re on rain delay.  Hour 5.  Super excited I woke up at 5:15 AM to hit the pause button ad infinitum.  The kids played their best defensive game yet yesterday, hanging in with THE team to beat.  Boy did they underestimate our guys!  I’m looking forward to them keeping their momentum today.  My kid’s the starting pitcher and he couldn’t be more excited.  Go, MBA!