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

Take Us Home 

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

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


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

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

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

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

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

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

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

Home. Happy Anniversary to us.

Singin’ In The Rain

It was a dark and stormy night.

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

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

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

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

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

I got my own sign!

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

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

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

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

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

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

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

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

#WhyWeWalk

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

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

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

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

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

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

And Now For Something Completely Different (Sort Of)

I am OBSESSED with current events, and my obsession is fast-tracking me to inert despondency.  And fear.  I have a small forum at my disposal here–thank you, dear readers–but there are those who write with clarity and cogency more skillfully than I, so for today I leave that to the experts.  My heavy heart is getting checked at the door today, because I said I would embrace and share positivity.  And also, the death grip with which I clutch my 50.1% majority hold on my sanity is starting to hurt my fingers. I shall instead use my fingers for this:

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Three months from today, Sunday, April 30, is the 2017 Milwaukee Area MDA Muscle Walk.  Last year I wrote a post about things I’d rather do than ask for money. In essence, I’d rather do ALL OF THE THINGS before asking for a hand with anything.Click here to read 2016’s Would You Rather? There are some deep thoughts here, friends.

But I asked.

And you responded.

So it begins anew in 2017.  The quantifiable ten pounds of despair I lug around with the rest of my addled-brained, drained, and pained body is asking for your help.  There are many worthy causes to which you can cast your financial support, I understand entirely.  On the rare occasion I do answer my home phone and hear the click-pause-“Hello, Wendy? How you doin’?” on the other end, I try to be respectful of the shit job the telemarketer has.  I listen politely, albeit distractedly, just waiting for their pause to interject, “I wish I could help, but most of our family’s fund-raising largesse (largesse, Wendy?)  goes to support the Muscular Dystrophy Association (OK, seriously, after two years, why does WordPress still not recognize ‘dystrophy’ and tag it for needing correction?  It’s like you don’t even know me.).  Sorry, sidetracked again.  I understand [insert worthy cause] is deserving and important for your clients, and I would love to throw financial support your way, but I can’t commit just now.  They continue; I rebut; they continue, and this usually where I end up feeling like a complete heel when I hang up.  So feel free to hang up on me.

But I sincerely hope you don’t.

Be like the cool kids!  Be on the side of right!  Peer pressure always works, right?  Be like Heather Trotter, Terry Radtke, and Rose Mary Walecki–Team Greater Than Gravity’s first Muscle Walk contributors this year–and support our team!  Oh, and by the way, I’ll never not feel super dorky saying “Team Greater Than Gravity”  because, well, obviously. 

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My kid is not usually one to goof, so imagine my surprise to see him chillin’ with his cabin mates at the photo booth last summer.

So here’s the link:  Click here to hit up our team page. You can join the team or make a donation.  Either way, you’ll have my undying gratitude and get a shout-out in my not-world-famous-but-gaining-momentum-little-blog here.  I know, right?  Tingles.

See, It’s MY Car

Few things feel as much as a violation as strangers rummaging through your private property.  Yesterday as we watched the Green Bay Packers stick it to the Giants at the frozen tundra of Lambeau Field (you know the voice, right?), some dick invited himself into our car.  Sure, I could’ve used “interloper” or “budding felon” or “low-life,” but I feel like “dick” captures his essence.  Her essence?  Statistically it’s probably a male, so I’m playing the odds here.

We were sitting in our living room, which faces the street, at which were weren’t focused because hello? Packers game??, when someone stole part of our portable DVD player and rifled through the rest of the center console and glove box.  Because I work in the ‘hood and practice vigilance and really, more because we have nothing of value to steal, nothing of value resides in the car.  There was nothing to snatch quickly but the second video screen for our portable DVD player, so he absconded with an essentially useless piece of technology.  I fully expected to find the screen laying in a nearby alley or gutter when I got home this evening because it’s worthless without the control unit, which remained.  There may have been $.13 in pennies in the center console, and that’s not a typo–the decimal is in the correct place–we maybe had thirteen whole shiny pennies, probably really only like eleven though to steal.  They didn’t even bother with the pennies!  Suckas.

Tom came in from having put the car in the garage, STILL broad daylight y’all, asking if I had brought in the DVD screen for any reason.  He had that uneasy feeling, inexplicable until the puzzle pieces click in place, that something about the car was amiss.  I’m no Felix Unger, but neither am I one to rifle through shit and leave it tossed all over the car’s interior.  Yesterday was sunny and clear for the first in a long time, and we were left to conclude that we’d been robbed.  Basically had we turned our necks window-side, we couldn’t have helped but see it, but the guys in green and gold were so distracting!  Not gonna lie, you feel kinda duped when your car is robbed while parked in front of your house.  In broad daylight.

My stomach churned for most of the second quarter of the game.  This could’ve been attributed to the Packers’ sickly first half offense, sure, but no.  The intrusion hit me physically; my reaction at a visceral level, and I felt sick.  Fortunately, Aaron Rodgers connected with Randall Cobb to end the first half with a holla! and I was over it.  Well, not entirely over it because here I am twenty-four hours later writing about it, duh, Wendy.

rodgers-cobb

So instead of staying annoyed with humanity, I’m choosing good over stupid.  What a peculiar segue into my, “HEY YOU GUYS!” plea to support Team Greater Than Gravity for the 2017 MDA Muscle Walk, huh?

I began blogging almost exactly two years ago, after #1 was diagnosed with muscular dystrophy.  I was paralyzed.  A neurologist told me my baby, my firstborn, my sure-he’s-clumsy-but-eventually-his muscles-will-catch-up-with-his-height was going to live his life never catching up.  I’ve written about that day before, and won’t revisit it today.  The anniversary is right around the corner, so it’s sure to be an up and coming post.  Where was I?  I was paralyzed.  I knew not what to do or say, and felt a helplessness and despair I’d not wish on my worst enemy.  Only as I wrote, I began to understand my feelings.  It’s hard to explain if you’re not the writer type, but writing told me how I felt.  Often I didn’t know what I felt until I read my first months’ of posts, and I’d go, “Oh, I’m frustrated that the Y closed,” or “I’m terrified to meet other MDA moms and dads,” or “Sometimes I’m pretty funny, and sometimes I’m a ridiculously easy crowd!”  Anyway. . .

After a time, my paralysis ebbed a bit that spring, and I found determination to raise funds for the Southern Wisconsin MDA Chapter’s Muscle Walk.  In year one, our team raised about $1900.  I was mystified at my good fortune to have people in my life, so concerned and generous, that they donated to our effort.  I DID something.  Well not me, it was YOU, you freaking amazing people, but I asked.  I did something.  WE did something.  Last year you more than doubled that, and I swear to the stars that if I ever find out who anonymously donated $1000 to our team, I will kiss you on the mouth.  And you know I am NOT much for hyperbole (insert winky-winky emoticon here).  But even if you didn’t donate $1000, ’cause really?, I love you for being here with me.  Thank you.

Today, to show the world that I’m picking goodness over misdemeanor theft, I open my 2017 MDA Muscle Walk page.  Join us, won’t you?   Click here to donate to or walk with our team on April 30.   MDA Summer Camp is a life-changing experience for kids with muscle disease.  That is certainly NOT hyperbole, folks.  It’s also not that last time you’ll hear me beat the drum for our effort.  #sorrynotsorry  Last year we helped fund camp for 5 kids and more.  But of course you can’t mathematically divide a child.  Obviously.

Life changing, for reals.

My kind of paralysis ebbs and flows.  Today, I moved forward.  Purpose.  Momentum.  I’ll even kick in the first thirteen pennies to start.  Shine on.

Oh Yeah

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

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

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

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

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

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

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

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

 

 

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?