Dear Counselors,

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

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

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

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

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

Dear Counselors,

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

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

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

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

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

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

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

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

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

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

Wendy Weir

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.

 

 

 

Pretzels. Yep, That’s The Title.

Friends took our boys to the Brewers game last night, thanks to tickets they’d won for their MDA fundraising efforts.  Thanks, guys!  All week I’d been looking forward to a quiet little grocery shopping junket with my husband.  I know.  I need a life.  It’s just that work is breaking my heart these days, and my brain apparently converts heartache into somatic symptoms.  I’m really tired these days.  Really tired.  Blah.  Plus I actually enjoy grocery shopping more than other household chores, so yeah, I looked forward to a Friday night grocery game.

Bliss ended about one-fifth of the way down the first aisle though, and I got crabby.  Stupid crabby.  Probably I shouldn’t even write this post because my crabby is that genuinely stupid.  But since I almost never save myself from my own stupid, off we go.

Our grocer carries two kinds of pretzels vended in large vats: traditional pretzel rods, which my husband loves, and honey braids, which I prefer.  I asked my husband to grab a container of the twisty kind, and he said he didn’t like them, so he grabbed the pretzel rods.

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And that, friends, is where the wheels came off the bus.

In my very least adult, most passive-aggressive manner, I snatched up a container of the snack I wanted, and launched into a diatribe questioning why couldn’t I have what I wanted?  Just because you like something else doesn’t mean we can’t get both! Why is that I always give up my portion or simply give you all the portion of food that I want because either you prefer something else or I feel you’re more deserving?  Do you know how many times I don’t get to eat something because I know the kids and you eat more than me, so I only grab like two french fries or a teaspoonful of noodle side dishes or bananas or whatever?  I always choose the ugly enchilada or make due with the broken taco shells.  Why??  Why is it assumed I’ll take the corner piece??  (which is aces when it’s cake because frosting! but otherwise, corner piece of whatever is nobody’s first choice, right?)

Yes, those thoughts and words passed my consciousness, and a few even passed my lips, but mostly I just remained mute.  Because crabby.  And passive-aggressive quiet the remainder of the evening.

I felt like there was some big lesson I should pull together from the 2017 May Pretzel Incident, but really I’m just a jerk, and any lesson I have to teach has reached its intended audience.  Me.  Get over it, Wendy.  In retrospect, I think maybe he didn’t even hear me.  He tunes out 70% of what I say anyway, which is super annoying and frustrating in its own right, but a topic for another post.  I think I might have mentioned that when I’m not mute, I talk a lot.  He says sometimes I’m “quiet,” but I think that’s guy code for “I’m not actually listening, and I don’t want you to be super pissed.”

If there’s any takeaway, let it be this:  Moms, you’re amazing.  Of course you give up that last banana for your kids, even when you really want it.  Of course you divvy up your portion of French fries when you see your kids’ plates have already been cleared of their (already much larger but who’s counting) portion of fries.  Of course you forego any semblance of a social life for baseball, piano lessons, band concerts, therapy appointments, whatever your family needs.  YOU’RE THE MOM!  And most often you do these things happily.  Within my power and whatever financial wherewithal we possess, I would do whatever I could to provide opportunities to make my children happy.  There’s nothing that makes me happier than seeing my kids happy.

But it’s OK to want the nice thing, the pretty thing.  Because Moms, you’re amazing! Every so often, a girl wants to be reminded that she deserves her very own enormous container of honey braid pretzels is all.  Happy Mother’s Day to each of you who fulfills the role of mom.  Enjoy the spotlight this weekend, and don’t forget to overlove your babies, those once- and still-slobbery creatures whose being confers your favorite-ever title and job you wouldn’t trade for all the world: Mom.

 

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.

Nevertheless They Persisted

After the inauguration of the sitting president of the US, I wept fairly routinely for several weeks.  It wasn’t a stretch of sobbing, heaving ugly cries, but rather an intermittent shedding of tears of despair when I’d think about what we were losing.  If, after the past few months, you still celebrate the behavior and policies of the current administration, you will probably not wish to read any further.  It’s OK.  I believe in the Constitution (you remember that little document, right? I mean, someone has to, right?), the right to free speech and protections from persecution for differing opinions.  We can disagree.  Go ahead and curse me for the bleeding heart liberal you hate me for being.  I will find a way to live with that.

I don’t watch broadcast journalism often.  Really, almost never, and that started long before this buffoon’s reign; I moved into my bubble of ignorance when another political buffoon, more locally and personally destructive, rose to power and diminished my livelihood in 2011.  Still bitter, yep.  After January’s inauguration, news blasts came to me via Twitter because my psyche couldn’t manage the barrage of executive orders and the talking heads’ interpretations.  I joined friends at the Women’s March through their photos and video feeds.  It’s terribly egocentric, but I remember thinking this:  The “new world order” would demand that my son’s class trip to Washington, DC would be canceled.

Many, MANY more people have lost and/or stand to lose things considerably more substantial than a class trip.  Their very lives, for example.  I understand my concern is superficial beyond superficial; I am not THAT poor a steward of human decency on this earth.  But my blog is neither political nor social commentary (usually not anyway).  My blog is about me, and my son so I’m writing about me and my son.  That’s how we roll here, see?

Working and living in a large, urban school district, we often fall prey to sweeping mandates and/or knee-jerk reactions for reasons not always entirely clear to the masses.  My opinion.  With the faintest whiff of fear or fear from backlash, the district has previously recalled travel itineraries.  Believe it or not, this isn’t a nasty criticism–I have avoided educational administration my entire career.  There is no sum of money I could earn that would entice me into being someone’s boss (and friends, salaries are certainly bigger than mine, but it ain’t like principals or special education supervisors are exactly breaking the bank–for the work they are charged with, they’re grossly underpaid).  I don’t envy the decision-making high-level district administration does.  When you’re responsible for young lives traveling nationwide or abroad, you cancel when a terrorist or travel threat looms.  I understand.

Somehow we’ve made it to April, 2017.  Well, almost.  It’s March 31 anyway.

My thirteen-year-old is going on his class trip to Washington, DC!!!

Sunday morning at 5:30 AM, I am to deposit my six-footer in front of his school–backpack, carry-on luggage, blanket, pillow, wad o’cash, and iPhone–in tow.  We began planning this trip before his muscular dystrophy diagnosis, back when we believed he was merely a clumsy kid.  Before.  When there was a before.  The thought of him being denied this trip he’s been excited for and planning more than two years was more than I could take.  So yep, I’m a selfish jerk.  Gimme a name tag.  I don’t do name tags, but I might consider this one just this once.

Or this one.

I was (am) nervous about his adventure because, um, yeah.  He’s thirteen and not super independent.  Or coordinated.  My generalized anxiety about my kid being gone a week is compounded by a factor of 5.4 gajillion adding MD to the mix.  He can still walk, yes, but he fatigues easily and often.  This trip is crazy with the walking.  He has poor fine motor skills, and I worry about his ability to handle cash.  For at least a year, I’ve had visions of his cash raining all over DC, and not in the comedic “make it rain” way.  He forgets to collect change after cash purchases.  He worries he’ll be left behind (moving more slowly than his very nimble peers), so attempts to move quickly.  Quickly for him nearly always results in him dropping whatever he should really be taking great care to manipulate.  He only recently has begun to smell nice (read: wear deodorant without maternal prompting) and bathe without prodding.  He doesn’t snore, but he does breathe loudly, and one of his roommates is very concerned about that fact, thus in turn, he is concerned and so is mama.  I’m worried he’ll have to use the toilet on the bus, and we have been warned: Whatever is deposited on the bus, remains there for the duration of the trip, and I’m like please God, if you’re a thing and we don’t have really any kind of relationship whatsoever I know, but please don’t let my kid take a dump on the bus. pleasepleasepleasepleasepleasepleaseplease don’t poop on the bus, Son.

He is going to have the experience of his young lifetime.  I was never afforded any type of opportunity like the one he’s preparing to head out for in all my years.  I wish him every adventure and happiness, and I wish it was timed under the tenure of a different commander-in-chief.  Though logically, I believe it won’t, somehow I feel like his experience will be diminished, and NO, I have not voiced this opinion to him.  My child, he of the shitty disease, determined all on his own that it’s not cool to mock disabled people.  My child, he of the multicultural school, determined all on his own that his Muslim friends and classmates of Mexican heritage aren’t the children of rapists and murderers.  My child, so often on the sidelines, so often residing in a world of his own imagination, populated only by himself and his thoughts, is mine.  Well, ours actually.  He is a decent kid.  Like some great historical figures, and some of more recent note, he persists.  They persist.  This class trip is going to happen, and I’m thrilled for the kids.

In his youth, our nation’s first president wrote 110 Rules of Civility & Decent Behavior in Company and Conversation.  I’ve broken at least 89% of those rules in this post alone, but the kids are going to Washington, so I have to mention at least one of his rules.  I think maybe if our founding father had social media, he’d have tweeted this.  It’s a good one to send my kid off to DC:

Labour to keep alive in your breast that little spark of celestial fire called conscience.

Persist, my boy.  Have fun.  Be good.  Do good.  Just don’t poop on the bus, OK?

 

10 Things My Dog Doesn’t Need

But can’t live without apparently. There’s little more humiliating than circling your dining room table in pursuit of your dog and whatever the hell said dog just made off with clenched in his jaws. Caleb is working on improving his shame game–he at least flashes an expression of “Hey, I am who I am, lady, and really, YOU’RE the idiot for not living in a vacant warehouse.”  Then he hauls ass, top speed, in canine glee, because hey, he is who he is.

This post could well have been titled 3,454 Things My Dog Doesn’t Need.  I am proud and delighted to report that my dog is not the worst dog in the entire universe–he can learn, but our boy is a willful little Teutonic canine mashup.  Progress is incremental, but he can and will “sit” and “touch,” so hey, something.   The worst dog?  That special honor is bestowed upon another rescued dog in his Caleb’s obedience class. He is getting there, Caleb is, just not at a speed with which I am comfortable. He is trying.  And I mean “trying” as both a verb and adjective!  I’m trying too.  I am trying not to lose my mind and verbally spew what I’m thinking when he pulls me down a mud-soaked path in the park. I’m trying not to recoil when he re-eats his own vomit in the backyard. (Sorry if you are reading this over the dinner hour.)  But when you rescue a dog, you commit, that is what you do–you commit!  So we are committed.  And maybe I should be committed.

Since 3,454 things would make a super long list, and ten is a good number for lists, here we go. . .

10.  Dogs don’t wear baseball hats. You’ll never need one, Caleb. Ever.

9.  Likewise, dogs don’t wear shoes.

8.  Or socks.

7. Placemats. Now here I at least kinda get the allure. They’re very likely to contain crumbs, or maybe you’ll score the mother lode and land one with butter or honey or chicken grease rubbed in. And if you’re wondering why our placemats contain foodstuffs residue, you obviously don’t live with boys.  It can’t be just my boys who find napkins so luxurious or inconvenient they don’t want to use ’em, right?

6.  Recently added to his thievery repertoire are dish sponges. He loves shredding the yellow part, but seems weirded out by the scrubby green surface. You know, it’s almost like he’s brushing his teeth, so maybe this one can stand. Maybe not.

5.  Books. I feel the certainty of the divine that you’re not actually going to read Night by Elie Wiesel.  You can look all academic and even respond to “Sit,” but Caleb, you are no scholar.

4.  Athletic supporters. ‘Nuff said.

5.  Bath towels. If I thought there was any chance you’d accomplish incidental cleanliness, I might get behind this one too. But yeah, no.

4.  Ink pens. Now you’re just an a-hole, dog.  And even Oxi-Clean teamed up with aerosol hair spray cannot remove the stains completely. And I know my way around a can of hair spray, people.

3.  Kleenex tissues, preferably used. These are just snacks now. My dog is an idiot.

2.  Rubber bands. You do not even want to know how I know this.

1.  Slippers. Like shoes, they’re not a canine necessity, because you’re a dog!  Unless it’s mid-summer or mid-hot flash at which time I radiate the heat of a thousand suns, I am a human popsicle. I need my slippers, Caleb, I do.  Importantly:  I need two slippers.  Two is the magic number for me, but I’m short one slipper thanks to ol’ Sparky.  I miss my old, blue slippers.  They had at least one good season left in them, a couple months at least, but no.  *sigh*  What are the odds that my friend Jill just happened to have an extra pair of slippers–still in their original packaging–in her trunk?  Turns out the odds were 100%!  Thanks to Jill’s footwear generosity, I’m not still fuming mad, and Caleb lives to wreck more stuff another day.

I am not even going to mention the fact that within twenty-four hours of my son getting his wrist splint fit and created, the dog bolted with it, and chewed and slobbered all over the thumb support strap.  I hadn’t even gotten used to the idea of my  #1 son needing the splint when my #2 calls me at parent-teacher conferences to tell me that the dog split with his brother’s splint.  See, because that would make two blog posts in a row that I barely mention the splint, and thus far, that’s workin’ for me.  Not denial, no, just not high focus.  Plus, eleven isn’t a good number for lists.  Obviously.

And also I don’t want to hear it from anybody who thinks I’m overreacting to MD because my son “doesn’t look that different, I don’t know what she’s worried about.”  I get to decide how my child’s diagnosis hits me, not you.  Until you have the conversation with your child about his or her likelihood of losing his/her ability to walk and requiring durable medical equipment, you can butt the hell out.

PS–Did no one notice my mad enumeration skills?  #NotEvenClose

I’m Practically Canadian 

I’ve passed on a billion cool opportunities in this lifetime.  Until recently, I’d have classed myself out of some perceived bonuses, believing I was neither good nor deserving enough to cash in.  Too often I’ve designated myself unworthy of any VIP lifestyle–who do I think I am anyway?  I’m mostly a rule follower, so never tried to sneak in to anything or try to score something above my station in life.  I’d observe longingly from the sidelines, questioning how did they get that?, and walk off, aware that in the us vs. them, I was a them.

Still, I marveled at how people got to do the stuff they did.  “That’s so cool!” I’d think, or “I could never do that!” or “They’re so lucky!” were common refrains.  *sigh*  I champion the underdog in nearly everything, I suppose because I know myself as that underdog.  Not coveting, but not not wanting my moment in the sun.  Surely I don’t deserve special treatment or an extra-special anything really.  I’m just this girl from Milwaukee, nothing to see here, folks, keep moving.

I never want my children to feel ordinary.  NOT entitled, never.  But not ordinary.

Saturday night my little guy and I traveled west of Chicago to see Alan Doyle in concert.  Alan Doyle is a Canadian musician/singer/author/actor, widely known north of the border, but playing comparatively smaller venues in the US.  The guy obviously loves his job!  He and his band, the Beautiful Gypsies, empty their hearts on the stage instrumentally and vocally.  I’m new to the fan club, but what I lack in tenure, I make up for in enthusiasm.  My kid and I sat near the front, and to look at my son during the performance, you’d have thought he was steps from a coma.  You’d have been very wrong.

He had a great time!  He knows Alan’s music as well as I do, and has even worked out Sea of No Cares on piano!  He loved the show!  What he dislikes?  Attention.  He may have looked like the poster child for preteen narcolepsy, but he was into it.  INTO it.  He’s eleven, so any kind of scene he’s going to make will be on his ‘tween terms.  He never stops talking or moving at home, but he’s a different child out in the big, wide world.  He’s quiet and shuns attention until he’s all in, and then he’s ALL IN.

But I noticed shades of quiet not attributed to shyness recently, and felt like Saturday night was as good a time as any to take that bold, first step.

After his shows, Alan Doyle invites anyone interested to stick around and say hello.  He’ll pose for photos and sign things for fans.  The first time my boy saw him last January, Alan gave my son his set list from the stage.  That guy!   My guy was wilting, and when an Alan überfan asked if she could photograph the list, my son was astonished into near paralysis–only his eyes moved to search me for the correct response.  We didn’t stick around then ’cause it was a school night, and we were staring down a two-hour return trip home and I am a responsible parent, but he kept the set list because, hello?   Oh, FYI, of course we let the woman take a pic of the set list.  We’re cool like that.

Late Saturday night, my boy makes his way to the restroom for the pre-travel potty break while I chatted with some friends.  Looking over my shoulder, there’s a scrum of fans surrounding the man in black.  I ask my kid if he wants to hang around to meet Mr. Doyle, and he’s quiet like, “Aaaaaah, nah, that’s OK.  There’s a lot of people, and mumblemumblemumble.”  Naturally I was like, “Let’s, honey.  Let’s go say hello and tell him how much we liked the show.”  (Because I am SO GIFTED with the words, and probably no one has ever said such a unique thing to him in his decades-long career.  Jaysus.)

He was nervous up til and including the very end.  My son, not Alan Doyle.  “Are you sure it’s OK, Mom?” (Oh no, he sounds like me!)  I produced the set list from my purse and he was all, “I was looking for that!” (his room is like an episode of Hoarders, Jr. so of course he had to be looking for it–nothing is ever where one expects it might be in that morass) and I was all, “Let’s ask him to sign it” and he was all, “I don’t know if we should” and I was all, “Then yes, we definitely should!”

And we did.  And I was sooooo awkward, not at all fleet of speech.  I wanted to show my kid it was OK to do something cool like meet the guy who just put on that terrific show and not feel like you didn’t deserve to say hey.  I probably proved actually how very little I deserved to be there–words are hard, people, even for a wiseass like me.  Instead of saying how much I enjoyed reading his memoir, how I thought he penned a beautiful love letter to his hometown with such detail I could see him running up and down that hill, how he paints pictures with words and melodies and on-stage energy, how Take Us Home is one of the sweetest songs I know, I ended up basically mute.  Super, Wendy.  But I showed my kid he could do it, even if you sound like a complete dork while doing it, the lesson is this: leap.


My kid thought it was pretty slick.  He told me that after last week’s planes, trains, and automobiles to my Barenaked Ladies bender, and this trip to see Alan Doyle, I was practically Canadian.  Man, I love that kid.  He deserves the sun, the moon, and all the stars.  All of ’em. He is kind and gentle, my kid–he sat next to me at a concert and didn’t completely die when I got up and danced.  Now if that doesn’t say something right there!  He’s funny and concerned and shows empathy.  He is not an undeserving, ordinary boy.  He’s special, and I’m so glad he’s mine.  I just hope it doesn’t take him nearly a half century to know and remember how special he is.

PS–I managed a whole blog post and never once mentioned that my Number One Son came home from OT with his first piece of MD equipment today.  I didn’t even cry. I didn’t take him to the appointment, but details, whatevs.  Today was a first. For both of us.  Exhale.

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.

This Is Not A Blog Post

It looks like a blog post, sure, but it’s not.  Nope, it’s my February plea to you begging for support of our Muscle Walk Team in person or in dollars.

I have nothing to offer in return.  Of course I’ll include you in my “These People Are Freaking Awesome and You Wish They Were Your Friends Too” thank you list, so there’s that.  You’ll probably feel pretty good that you helped individuals stricken with super shitty diseases like ALS and the many variations of muscular dystrophy.  To steal from the MDA:

The freedom to walk, to talk, to run and play.  To laugh, to hug.  To eat.  To breathe.

Each day these freedoms are taken away from kids and adults with muscular dystrophy, ALS, and related diseases that weaken muscle strength and limit mobility. Together we can change that.

And, HEY!  Bonus, y’all!  Through February 28, donations made will be matched by Educators Credit Union, so you’ll be donating twice.  And everyone knows that twice something is waaaaaay better than just once of something.  Unless it’s like chickenpox or middle school PE class or really bad sushi.  So except for that, twice is better.  So donate to our team twice.  But not really twice, you only have to do it once, the credit union will do the rest.  I feel like the point has been made.

Click here to make a donation to our team.  Then share or retweet this not-a-blog-post.  Pleeeeeease??  You can also join us April 30 at the Milwaukee County Zoo.  Engage in a little weekend philanthropy.  Go ahead, pat yourself on the back.  I totally will do the same when I see you.  Actually I’m more likely to hug you and probably get all sappy on ya–I am who I am after all, but again, you probs get the main idea of my message here.  THANK YOU!  That is the take-away.  Thank you.  With all my heart.

xoxo