Safe & Sound

My Number One Son is attending College for Kids this week, enrolled in an annual Young Writers’ Academy, which he loves.  On our commute yesterday morning, he asked after what I’d been writing lately, and I admitted to being in what you might call a slump.  “Why don’t you write about me going to camp?” was his helpful, if a bit egocentric, suggestion.  Turned out to be an effective prompt, so here we go.

The best week of the year.

The Muscular Dystrophy Association refers to camp as that, the best week of the year, and they deliver.  They over-deliver, in fact.  At registration, I was told the letter I wrote to the counselors was perfect, which may be (is definitely) shaded in overstatement, but I appreciated the compliment.  I received the most beautiful email from a couple whose son was taken from them in 2012 due to complications of Duchenne MD.  Through the miracle of Facebook, they were connected to this post, and took the time to contact me.  Early in my blogging career (go on with your bad self, girl), I thought it would be a miracle if I could connect with or help or support even one person, and these terrific parents told me I could check that off my list.  Yeah, tears were shed.

Thanks Wendy for your letters to the counselors. I cried reading it to my wife. This brought back many memories when we took our son Todd to MDA summer camp. . . Your words captured what we thought about the camp counselors, we always said thanks, but never really knew how to say more than just that. Your insight was very thoughtful. These young adults give up a week out of their summer to be big buddies to our kids. I always wondered if they truly ever knew what impact they had on so many kids and their families.

Oh my, oh my, oh my,  you are welcome.

I delivered the big kid to camp alone this year, as my husband stayed in the Wisconsin Dells with our younger son for day two of his baseball tournament.  I think going solo made drop-off easier for me this year.  I was responsible for getting all of the things he needed packed and ready and in the car, I had to get up at the crack of dawn and get all Google Mapped out to ensure an on time arrival, and I welcomed the busy-ness.  There’s much less time to wallow in contemplation when one is occupied with purpose.

Just having been there at Camp Wonderland before made the process less scary, more familiar this year too.  There was a moment of confusion, but just a blip at that, as the camp director called down for my kid’s counselor.  “Don’t leave this room until you talk to me again, OK?” Sarah asked, and who was I to wander?  I’m very good at following directions.  Minutes later–nothing but a typo causing the blip–my son was introduced to his counselor who happened to be wearing a YouTube tee shirt.  Bonding start to finish before we even got back to the car to unload!  Back up to Willow Cabin we drove for 2017’s best week of the year, where we unloaded in under 45 seconds thanks to a local chapter of a HOG (Harley Owner’s Group), ready to shuffle the kids’ belongings into the kids’ cabins.


As a mom, you kinda want this to drag out a little.  You kinda want time to linger, to check out the cabin, make face-name connections, learn who your kid will be tossing and turning with over the next five nights.  Instead, you keep your sunglasses on, aver in a surprisingly stable tone of voice well, it’s time, and demand that he bring it in for a hug.  In something of another surprise, your kid obliges with the hug and seems to mean it!   You turn, straighten your shoulders, exhale a too-long sigh, and resume a right-left-right-left cadence.  You only cry a little bit, and you turn around just once to catch that one last glimpse out of the corner of your eye, but you’re already too late.

But you’re OK.

And so is he.

He is better than OK, and you’re grateful in every conceivable way.  You’re also grateful in one especially weird way–you miss him less than you believe you should because you know, you KNOW!, he is where is meant to be.  He is home.  He’s home with the only other group of people who knows what and how he feels.  You miss him less than you should because part of you doesn’t want him to have to come to your home, his real-world home; you want that camp never to end for him.

The closing photo montage this year featured an acoustic version of the song Safe and Sound by Capital Cities.  How these people don’t cry their way through this presentation is nothing short of miraculous to me–I misted up immediately at that underlying message: camp is where our kids are safe and sound; that theme was not lost on me.  They are.  In closing, Sarah thanked families for trusting her, the counselors, and the medical staff.  That she could only imagine how terrifying that could be–to leave your child and trust that he or she will be OK.  Not me.  Never terrified.

Photo swiped from the MDA Southern Wisconsin Facebook page

Thank you for sending my kid to camp, my friends.  Thank you for hanging in with me every step of the way.  I lack the depth and breadth of vocabulary to express just how much you mean to me.  You will just have to trust me.

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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.

Finding His Tribe

The Fine Print:  If you know me in the real world and know my son, you have to promise, no you hafta pinky swear you will never make mention of this post to him. Never. Like for reals, never.  EVER, OK?  If you know me IRL and feel like you might just maybe have to say something to my boy about it, don’t even read this. Just walk on, man.  It’s one thing for me to write about my maneuvering his MD, but this post is about my reacting to him reacting. See, it’s a kinda meta piece I’m working out here.  When your heart breaks into six million pieces for your child, you don’t want to be Janie One-Note, so in the real world you minimize this, and talk about other things, more upbeat things.  Things like, “Hey, my little kid was named MVP in Saturday evening’s baseball game by the opposing coaches” and “Yeah, we stayed in a 1950s-era fleabag roadside motel for the tournament weekend and $180 per night was quite literally highway robbery, but seeing the kids have a team-wide blast of a pool party Saturday night was worth the price of admission.”  Things where you can crack wise and make people laugh instead of worry about your mental stability.  Here is where I get to (have to? need to?) lay it down, but it has to be our little secret, OK?

For starters:  the Muscular Dystrophy Association.  Seriously.  Kelsie and Stacey–you are two amazing young women.  I am so happy I get to know you.  Though a tiny part of me still wishes I didn’t have to know you because I will always and forever wish my kid didn’t have muscle disease, I am grateful to tears at least once daily (still) that you are the face of the MDA for me.  I know there are so many more MDA staffers and volunteers I must thank, and I will trust you to do that for me.  I blubbered through camp sign-in and sign-out, and you will have to know that I’m a competent communicator in most facets of my life. I can’t make it happen around you two, not quite yet, but I feel like you’re wise beyond your years when it comes to dealing with parents like me.  Holy crap, are there others like me??  You poor things!

For seconds:  My generous friends, family, and yep, anonymous (still) stranger donors to our Muscle Walk Team Greater Than Gravity.  You covered 5.5 children at Camp Wonderland this week, indirectly or directly I don’t know–I’m not the accountant here.  Please know that every single penny of your contribution is worth it for those kids.  This I know for a fact.  And yeah, me here with the tears again.  Thank you.

For thirds:  Dillan, my son’s individual counselor.  You are going to make an incredible nurse.  More importantly, you are already an incredible human being.  You immediately took my son under your wing, and made him feel a part of something.  Before we even left Sunday, you brought him out of his shell with your words, ways, and deeds.  He wasn’t observing from the sidelines, he was right in there.  He rarely gets “right in there,” and I attribute that to your all-around good guy-ness.  He felt he could trust you on sight, and he was so right about that.  Thank you.  Really, thank you.  To my niece Lauren, who decided to become a counselor last year after my son’s diagnosis:  I love you. And even though my giant weirdo seventh-grader would do anything to avoid having his picture taken with you, he loves you too.  You have done a good thing, and that good will be returned to you.  I know this.

I say this all the time because it’s true:  I never adequately convey my gratitude with words.  Words are insufficient to express what’s coursing through my veins.  The depth of my thanks, the way my heart is skipping right now as I try to say what I mean to say?  Indescribable.  I want to get it right.  I won’t.  Words like so, very, incredibly, really, extremely are mere filler adverbs.  I’m much better in song, but since I’m neither a singer nor songwriter, and my band has yet to write a song about this, my thank you song remains unsung.

We received no return mail from our happy camper last week, and honestly I was expecting none, so we’re even. The MDA posted camp pictures throughout the week to assuage the fears of us mommies, and that had to be enough.  It was.

There were hundreds more photos, but I don’t have each camper’s parents’ permission to share.  I love this shot though.  Look at all that happy!

I missed my kid, but believed he was where he was meant to be, that he needed me less than I needed him around.  It’s the way it’s supposed to be, I understand, and I think his week was perfection.

 

Friday morning was pick-up.  The email cautioned families not to arrive before the assigned time, so good little soldier I am, I timed my arrival for exactly five minutes early.  Just a touch of OCD on the timeliness thing, folks.  I and another parent were dead last to arrive, because everyone else was waaaaaay early and has no regard for rules obviously! (insert smiley emoticon here) and we approached a camp employee to inquire where we were to pick up.  She kindly led the way, and this father and I walked in silence, him about 15 feet in front of me, toward the meeting hall.  It occurred to me in that moment that he doesn’t want to have to know me either, so there was a dearth of chit-chat.  It’s OK, sir, I get it.

I spy Lauren upon entry, give her a big hug and ask after my son’s whereabouts.  I find him soon enough, and you’re thinking he’s all happy to see me, bursting with hugs for his mom, right?  Nah.  He sees me, grunts in my general direction and says, “I’m finishing up a story with Garrett, Mom.  Hold on.”  Clearly devastated by his separation from me (mm-hmm), I take it for what it is:  my giant, weird seventh-grader being a giant, weird seventh-grader.  His counselor made him save me a seat next to him for the presentation (see, Dillan is a prince among college men), and that was enough for me.  I get it.

Dillan told me that he wanted to be my son’s counselor again next year, but didn’t think he would get to be because my son was so easy.  You know how in cartoons when Scooby Doo gets his bell rung, shakes his Great Dane head and does that “oy yoy yoy” sound?  Me.  Cognitive dissonance.  Easy?  By way of comparison, I suppose my kid is medically easy.  Got it.  As soon as the photo video montage began, the tears began a-flowing.  My son said, “Oh, this happened last night when they showed pictures.”  Like tears just happen, as if they were a sneeze, something physical and not an emotional reaction. We both blubbered through the whole thing, and my heart (and eyes and nose–it was not pretty, y’all) overflowed.  I brought along just one tissue FOR ME thinking my eyes might leak a bit, but was unprepared for his outpouring.  My sweet boy revealed a lot then and there.  And me without my waterproof eyeliner. Sheesh.

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Intermission.  You probably need one.  Let’s all go to the lobby and get ourselves a treat because this is one long-ass piece of prose.

 

Checkout begins in earnest after the photo movie, and after thanks were showered upon the counselors and medical staff.  My kid’s cabin’s nurse has volunteered 26 years so far.  26 years, you guys!   He said the place kinda gets under your skin, and I can see that it would.  These kids!   Camp graduates got to say a good-bye on mic, and you know I wished I had more tissue. Camp was their place, their comfort, their I’m not the only one.   I cry my way over to the camp director, and all I can do before losing my shit completely is mutter “Thank you.”  I’m crying days later here as I rerun the scene.

I get our car queued up, my son’s had help getting his gear packed (except for the lotion, shampoo and swim trunks he neglected), so all that is left is to say good-bye.  Dillan 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 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.

The homecoming was anti-climactic, and I figured that would be the way it was too.  No worries there.  The worries reared their ugly heads when we, scant hours after his return, repacked the car for his little brother’s weekend-long baseball tournament.

“I just want to stay at home in my own bed.  Why do I have to go?  Why can’t I just still be at camp with my friends?”

Hours later, sitting poolside, unable to do anything but cry–

“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.  Or home even.  I just want to go back to our room and look at pictures.  Can I just do that?”

Yes.  You certainly may.

And that’s when I wanted to die.  He knows.  He’s known longer than we have.  The only way I was able to make him smile was to drop the f-bomb.  Stay hot, mom.  It’s impossible to answer rhetorical questions such as his.  There’s no logic.  Why does he have MD?  Why does anyone?  I don’t fucking know.  It’s a perfectly legitimate question, but it’s nowhere near fair. So I said this:  “You had this amazing week at camp because you have MD.  I fucking HATE that you have MD (finally earned a grin from the tall one), but I’m thrilled you got this camp experience because of it.”  He finally understood what the Muscle Walk was about.  I told him that friends and family donated all that money because of HIM, and if not because of him because of me, so actually yes, because of him.  I told him someone I may never know gave our team $1,000 because of him, that I’d never felt more loved, but I’d also never felt less well-equipped to be the mom.

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Find your tribe.  I wish I’d written this.

I promised him that the passage of even one more day would lessen the ache his heart felt, and he let me keep my promise.  He’s called his counselor only once to check in so far, and has been messaging here and there with one of his cabin mates.  He found his tribe, those boys of Willow, and I get how finding your tribe is life-changing.  He’s already plotting and planning for next year, and that acute pain he felt Friday and Saturday seems to be on the wane.  Mine?  Well, that’s another blog post entirely.

 

 

 

Letters from Home

My big kid’s been away at camp since Sunday.  If the MDA Facebook page is to be believed, and why wouldn’t it be?, the kids are having a blast.  I was scrolling through pictures the camp director posted a short while ago, and the first one I saw of my son stopped me dead in my tracks.  He’s so big, my boy.  He’s taller than his college-aged counselor, and very suddenly, he looks different.  Older.  More independent.  Even more guarded.  Mature?  Different somehow.  My heart is arrythmic right now with this glimpse of a changed him away from me.

Before departure, families were asked to write letters to the kids and specify when they were to be delivered.  It’s a fool’s errand to try to write reality-based, real-time-ish missives of love from home, but I tried–fake it til you make it, or something like that anyway.  The underlying message was “I love you and I miss you, but I don’t want you to read one word that might make you homesick.”  The transcripts follow, and if you think I’m a generic mom, well, you’re WRONG.  Obviously you haven’t kept up on the hilarious, but warm autobiography I publish here.  I just didn’t want to give the kid one scintilla of a notion that life back in the 414 was anything short of hunkydory.  He was to have the best time ever, and not worry about us back home.

Monday, June 13

So you just had your first night of sleep-away camp!  You’re such a big kid now, and you never listen to me when I say, “Stop growing!”  You’re not supposed to stop growing obviously, and I know camp is only one of many adventures for you as you get older and more mature.

I can’t wait to hear all about your counselor.  Is he a pretty cool guy?  Do you see Lauren ever?  I’m pretty sure you’re the only camper whose cousin is a counselor there too.  Last year Lauren became a counselor with you in mind.  I know you don’t fully understand why that is a huge deal—and how it shows how much she loves you, but I hope someday you will.  Tell Lauren hi from me.

Are there more boys or girls at camp?  How ‘bout the campers’ ages?  Are the kids little, or more middle-school aged like you?  I hope you remember to be a good friend—be polite, keep your head up (and also look where you are going!) and listen to the other kids.  Listen like you mean it, and mean it!

Today was E’s last day of school and then he goes to YMCA Day Camp the rest of the week.  We may go to Chill on the Hill, but it will depend on the weather and also baseball.  Don’t forget we will be in the Dells this weekend for E’s tournament.  Grandma and Grandpa will be meeting us there.  I’m excited to see them too!

I hope you got to do some fun stuff and maybe even have a little run over to the snack shack.  Write it all down so you don’t forget any of it.

We miss you like crazy, but know you are in very good care.  The MDA says camp is the best week of the year—do you agree?

Be a good kid, and have fun!  Enjoy the moment—I know you know what I mean.

Love, Mom

PS—E says “ninnercrommie.”  He’s so weird!

 

Tuesday, 6/14

Hi Son,

We miss you!

I was wondering if there are any giant bugs at camp.  You know how I keep calm and collected with giant bugs!  Kidding!  But I am thrilled you are enjoying the great outdoors.

What was last night’s special activity?  I wondered if you guys sat by a campfire and sang songs at night.  I don’t have a great singing voice, but I remember loving to sing camp songs when I went to Girl Scout camp.  Hopefully you sing along.  It’s not at all the same as performing—have fun.

When is motorcycle night?  I’ve never been on a Harley—not quite my thing.  Maybe it’s yours?

Are you getting any good ideas for stories?  In a few weeks you have writing camp at UWM, so maybe you’ll have fresh experiences and material to draw upon.

Tomorrow is my last day of school, and may I just say, YEEEEEE-HAW!!!

I love you, Big Kid!  Hope your days and nights are kick-butt!

Love you,

Cranjis McBasketball

A/K/A Mom

 

Wednesday, June 15

Dear Hingle McKringleberry,

By the time  you read this I will be done with school!  Your summer rolled out a day early—lucky!!  We have a lot we’re doing this summer, but it’s nice not to have to set a 5:15 AM alarm.

So what’s the scoop?  Do you miss us or are you too busy and excited even to think about us?  You better NEVER be too busy to think about your mom, Mister!  You’ll probably have grown another 6” during the time you’re at camp.  Will we even recognize you for pick up Friday?

Tell me about the best part of your day yesterday.  Was it swim or rest?  Lunch or snacks?  Who’s got the coolest wheelchair?  Speaking of wheelchairs, have you learned anything about how they operate?  With your interest in designing trains and planes, maybe you can engineer some super smooth wheelchair modifications.

Are there any campers who live near us in Milwaukee?  From how far away are kids coming?

I’m very curious to know what you’re thinking about these days.  The house is very quiet now that I don’t hear, “Hey Mom” 642 times per day!  I also don’t hear “Not yet. . .” and I’m hoping the counselors aren’t either.  Please be a conscientious listener and be aware of what is going on around you.

I love you and miss you tons,

Mom

PS—Say hi to Lauren from me

 

I can’t recall how I completed this last camp letter.  I ran out of fake news and my left hand ran out of neatness.  Now that he’s been gone five days, I know I’d develop a very different bunch of letters.  Next year, right?  And don’t judge the penmanship either, OK?  Some handwriting analyst would have a field day with the inconsistencies found herein.

One of the camp activities was wheelchair basketball, and my son was placed in a wheelchair for the game.  I totally GET IT, but you guys, I gasped when I saw the photo.  Photographs can but don’t always catch genuine emotion.  Was he totally into the experience?  Was it fun?  Was he freaking out?  Did he give the “oh hell no, ain’t no way” in the second before the picture was snapped or was he a gamer?  I showed his younger brother photos from the day, and when he got to that picture, little bro looked stunned.  Looking at me sideways, oh-so-quietly he asked, “Is he in a wheelchair now?” Every pore of my body felt flushed and I broke out into pinpricks and cold sweat, and before I could respond with a gentle “no, not yet,” I felt the burn of tears.  No.  Not yet.

I saw the future, and can’t unsee it.  I wonder if he saw the future too.  I wonder if he’s better or more reasonably prepared to face the future than I am.  I hope so.  Sometimes my kid can’t plan how to put on both shoes, but can prepare and price out an international travel vacation itinerary.  He pens and illustrates elaborate cartoons and can imitate detail like you’ve never seen, but can’t seem to practice piano without being told.  My own child is often an enigma to me.  What does the future look like to a 12-year-old bigger than everyone but still little boy?

 

The Jig Is Up

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

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

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

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

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


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

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

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

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

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

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


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

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

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

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

It’s The Most Wonderful Time Of The Year

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

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

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

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

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

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Found this beauty on laurieschechter.tumblr.com

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

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This.  All of the above.

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

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

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

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

 

 

$800

$800 is what it costs to fund one child’s week at the Muscular Dystrophy Association’s Summer Camp.  My friends and family have sent 1.5 kids to camp so far.  Who are these generous and amazing people?  My good fortune.

#whyIwalk is the MDA’s slogan for their fundraiser Muscle Walk event.  My older son is #whyIwalk.

You NEVER think it’s going to be you–progressive neuromuscular disease does not happen to YOU, it happens to a friend of a friend of a friend, or some college roommate’s cousin or something.  Until it is you.  Until it’s your son you’re stumping for all of the sudden or a year+ post-diagnosis, and though you hate fundraising to the core of your very being, you ask friends and family to support a cause important to you.  And they do.  And you sit dumbfounded, tears in your eyes, reading emails stating “You have received a donation” because you have remarkable people who support you and love you.  Even when you’re a jerk or write impossibly inappropriate and/or revealing blog posts, they support and love you.  Thank you.

The MDA Muscle Walk is one month from today, no April Fool’s joke.  I’m already kinda sick to my stomach in anticipation of it, also no joke, but we will be there, Team Greater Than Gravity.  WITH matching t-shirts per our #whyIwalk.

Join our team or donate at Greater Than Gravity’s team page.

Things That Do Not Suck Even A Little

I blog in mood swings. I’ll run a streak of emotional, not super fun posts alternating with a run of goofs. In case you’ve not been keeping score, this post will begin a run (I sure hope anyway) of the random good stuff variety.  I have a blinding headache at the moment which I’d hoped would dissipate by my being otherwise focused here, but it would seem that the migraine is going to win tonight despite my efforts to distract my ache from my brain.  Migraine 1, Wendy 0 tonight.  Migraines are the only thing that sucks today.  Read on–

The award for “These People are Entirely, Completely, Utterly Kick-Ass” goes to my MDA walk supporters.  You know who you are, and now shall the whole world know about your generosity, your true kindness in supporting the MDA because I have asked you to.  We each have a limited amount of dollars earmarked for the greater good, and that you have chosen to donate to a cause because it matters to me means more than I’ll ever be able to say.  But that won’t stop me from trying.  Thank you Amy Van Ells, Rosemary Walecki, Valerie Hoehnke, Margo Turner, Lisa Nassour, Dena Rubnitz, Terry Radtke, Rosita Hill, Tracy Klement, Janet Sandner, Bek Szypula, Nikki Leininger, and three donors who have elected to remain anonymous.  My heart overflows, and you know that my eyes are leaking.

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So far, so good for Team Greater Than Gravity. Click on #whyIwalk to visit our team page.  No pressure or anything, but I will totally thank you like the supernova rock star you are the next time I run an honor roll.  xoxo

Tulips are my favorite flowers, a sure harbinger of spring and warmth.  What I love most about spring is the hope it ushers with its breezes.  Last weekend I noticed the first of several hundred bulbs just peeking through the soil. I stopped dead in my tracks and did nothing more than take a deep breath and smile.  I smile every time I look at them, and I’ll continue smiling until the last petal drops back to the earth.

No comparison to Mother Nature, but Eric Carle’s art has never, ever let me down.  I stumbled up on this scene somewhere on Facebook, and it’s simply too beautiful to keep to myself.

I’m a member of an online blogging group, and check out which blog they selected for their featured blog of the week.  I’ll give you a hint:  it’s MINE.  Bloggers are a wonderful, talented lot, and I am grateful to be included in and recognized by this group.

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I write primarily about one son, but I have two.  My younger son, 10, extends kindness and silliness to everyone he meets.  He is generous of time and heart, and is possibly the most thoughtful child born to this earth.  Last weekend my little one attended a rock/gem/mineral show with his BFF.  His BFF’s mother told the kids they could buy one thing to bring home, and my little guy immediately drifted off to a jewelry vendor to purchase something for me.  His friend’s mom, a super cool badass in her own right wrote me this about the experience:

He is SO SWEET.  Honestly I think he’s the sweetest little boy I have ever met.  I told them they could each pick out one thing for themselves and he instantly started looking at jewelry.  Warmed my heart right up.  You have a very special human being.

She’s right.

He puts it around my neck every day.

I learned recently that I am not the only one to whom #fontsmatter.  I have a draft of a blog post titled just that, #fontsmatter, but it’s still in its infancy.  My co-workers think I’m a little off-kilter for my obsession about fonts and kerning, grammar and spelling, but I am not the only one!  This shirt provides a wonderful example of precisely why #fontsmatter.  #fontsmatter, but I cannot make all the photos in the post the same size, and yes, it’s making me a little nutty.  Couldn’t do it even if I didn’t have a killer headache.

MY SONG!  I own this song (as in I purchased the CD and mp3, but I TOTALLY own it in the figurative kind of way too, even Ed said something to me about “my” song last summer and he co-wrote it, so I feel completely confident in asserting ownership, or. . .), so I can hear it whenever I choose, but there’s something special hearing your song come up randomly on shuffle.  Yeah, I totally don’t need the lyrics, but I think we can all agree that I am a master screen-shotter.

Last, but not least, we have this old photo.  This was taken on my birthday last September (how else does one celebrate if not with a margarita?), so it’s not technically accurate for this week’s things that don’t suck, but frosty beverages never suck. Not ever.

Cheers, y’all!  Thank you.  I literally and figuratively raise a glass in your honor.

Would You Rather?

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There’s probably published, peer-reviewed research about stages of grief and all that when families receive news like our son’s.  I cannot liken my son’s diagnosis to the grief that accompanies a loved one’s death, but I can say with surety that anger and depression were/are the real deal.  I never experienced denial though, not even for one minute.  As soon as my kid’s neurologist (although at that moment, he was not yet my kid’s neurologist, merely the neurologist) said he was certain my kid had muscular dystrophy, I was like, “Well, yeah.  Of course he does.  How did we not recognize this?”  I also never went through the bargaining deal.  I mean, yeah, I’d do anything to take it from him if I could, how I wish I could, but I wasn’t bargaining with anyone’s higher power about it.  Never saw the point.

I’ve not gone through prescribed stages, and not strictly grief-related, but as I read older blog posts, there has definitely been some type of progression in the way I approach the world as an MD Mom.  Coming out of the closet as an MD Mom last spring took some time.  Our family signed up for the 2015 MDA Muscle Walk, a fund raising event last April, but I was sooooooo loath to publicize it.  Acknowledging our participation meant that people would ask me why.  Why are you supporting the MDA all of the sudden, Wendy?  People did ask, and that internet invisibility cloak I referred to before, provided a comfortable (as if) vehicle to make it official.  Asking for donations for the MDA allowed me to begin conversations I never wished to have, still never want to have, on my own terms.  I reread a post I’d written last year about it, and I can physically feel my tummy butterflies, the tremor of my index finger as I hesitantly clicked publish last year.

I received an email from our local chapter’s MDA fund-raising leader Thursday reminding me that the walk was coming up.  She thanked me for getting our fundraising page up and getting some early donors already.  I wanted to puke less than I did last year, but still, pukey remains an apt descriptor for my stomach right now.  I think last year I got a huge pity push of funds.  Being a first-timer and all, friends who knew shared some intensity of grief or sadness or whatever it was I felt at that time for and/or with me.  They coughed up BIG BUCKS on my son’s and my behalf because my friends are freaking A-mazing, captial A A-mazing.  It’s not new this year, well the diagnosis still feels new for me, but it’s not the first time we’re walking, but the thought of asking for donations. . .  Ugh.

There are a million billion things I’d rather do than ask for money.  Any fundraiser my kids have had for school or baseball or when they were in Scouts?  BUY OUT!  Sure, I’m broke, but at least I avoided having to ask for financial aid.

I’d rather scrub the kitchen floor.  And I’ve been known to say that I’d rather scrub the toilet bowl with my tongue than clean the kitchen floor.  Jesus, Wendy.  I’ve been saying that for years, but seeing that analogy in writing is just gross.  I’ve even managed to gross myself out here, and my stomach is already wobbly.  Eeeeewww.

I’d rather run a 10K.  HA!  Who am I kidding?  I’ve never run a 10K in my life.  Keepin’ it real, I’d rather run a 5K than ask for money.

I’d rather sit in the second row for a Barenaked Ladies concert.  And THAT is saying something, people, because if I’ve taught you nothing, I’ve taught you that second row is NOT the front row.

I’d rather get up in front of 180 speech-language pathologists and give a one hour lecture on ethics.  I’ve done that once already, and it sucks.  There is simply no way to make an ethics presentation engaging or exciting, and I’ve already been trashed for my “cavalier” approach to it.  No one else is willing to step up and do it though, so default-setting Wendy is on call.  Still, I’d rather do this than ask for donations.

I’d rather do my taxes.  Really.  And I have been putting this off. . .

I’d rather watch a Wiggles or Teletubbies marathon.  I would!

I’d rather drink a beer.  I hate beer.  I know.  I live in Brew City, home of Laverne and Shirley and Miller and Pabst, but I cannot abide the beverage.  I want to like it, but nope.  When I was in high school and beer was the only illegal beverage any of us could score, I told friends that I was allergic to beer–you can understand that I didn’t want my friends to think I was uncool.  Really I just didn’t want to drink because beer grossed me out, plus I signed a code saying I wouldn’t, but I was a high schooler, so I lied. Apparently lying wasn’t in the athletic code.  A few days after graduation I threw back a beer, promptly vomited, and broke out in hives.  True story.

I’d rather watch Eyes Wide Shut again.  Wait.  I take that one back.  A bridge too far, y’all.

I will never find a comfort zone as it relates to soliciting for even the most worthy of causes.  The MDA is a great stinkin’ cause, friends, but I hate asking.  Hate.  I will never want to, but I will.  And I will want to throw up as I hit publish or share or tweet.  Every.  Single.  Time.

The First Last

Since his diagnosis, my son has demonstrated tenacity we’d never before known existed.  My big kid, he of the one word answers, is not much one for talking about feelings, especially about things he perceives as difficult. He keeps things close, leaving us at times to wonder 1) Anybody in there??, or (or maybe and/or) 2) Does he not emote much because he’s disinterested in whatever the subject matter happens to be or is he adverse to sharing his feelings?  Your mother’s heart pulls to feel like you don’t know your own child’s inner workings very well, but I understand that we all, each and every one of us, do things the way we are meant to do and experience them. I get all pissy when people tell me how I am supposed to feel or react, so I try not to place communicative demands or restraints on my son.  I am a speech-language pathologist, so you can imagine how much a challenge it is for me to keep my mouth shut!

The kids did not have school yesterday, so I arranged to meet a friend and her son at a local pizza place to celebrate mid-semester break. Apparently we don’t celebrate actual holidays anymore, so it wasn’t that they were off for Valentine’s Day (as if) or President’s Day, no, just the middle of the semester, which is also wholly inaccurate because now the kids’ school years run in trimesters not semesters, so it’s not mid-anything really. Math is hard and all, but even I understand that the math does not work on this one.  Sorry, wrong turn, I’m back. Ahem. The pizza place. . . It’s one of those warehouse joints with a buffet line a half-mile long, and a warehouse full of overpriced arcade games and attractions luring your kid in with the promise of tickets and the certainty of bankrupting his parents.

Upon our entry, the restaurant was selling MDA shamrocks. If you’re unfamiliar, the shamrock sale is one of those deals where retailers hit you up at point of purchase, asking if you are willing to spend an extra dollar or ten or hundred in support of the Muscular Dystrophy Association. You sign your name on a themed tagboard cut-out the restaurant posts, acknowledging your donation and heralding your status as a benevolent human being.  If you are us, you sign on the side that acknowledges the donation as being on your behalf. There were a couple toddlers crying at the pizza place yesterday, but probably just the one adult who misted up at the cash register.  Well, the only one who misted up about MD shamrocks anyway. It cost us nearly 70 bucks to walk in the door, so probably there were some tears shed by other moms blowing the dust out of their wallets to pony up the pizza ransom.

Naturally my kid wanted more than the VIP experience–life would simply not be worth living were he not to get on the climbing wall.  So because I am a good mom, and by good I mean guilt-ridden and crushed that my kid has this disease, I ponied up for the climb. I’m a sucker when my son wants to try something–anything–and I wonder sometimes if whichever activity he chooses will the be the last time, so I nearly always cave.  My friend says she always goes for the upgrades too because her kids are nice and not into drugs and stuff, so go ahead, you just-say-no-ers! Live it up!  I really like this friend.

He attempted two of the fixed walls, but could gain purchase no higher than four handholds or footholds up.  He tried so hard, but in the end his shoulders and hips and arms and legs lost the battle.  Breathing heavily, gripping with all his might, he fell.  It wasn’t a hard fall and it was onto a mat, but even from a relatively low height, he fell off the wall then crumpled to the floor upon hitting the mat.  His legs didn’t even have the strength to sustain his weight by this point.  *sigh*  You just don’t even know how fast the center of my chest raced before it collapsed in on itself.  My boy’s first last time he’ll ever. . .  I wondered about this last summer when our family went ice skating, but this time I know the first last is real.

Because the ropes are less fixed and allow for his feet to slide in and balance a tad more sturdily, he was able to hit the top of the ropes. Well, almost.  It took way longer than the other kids in line, the other brats who huffed because they had to wait that much longer for my son to complete his turn, but he did it.  He did it.