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.

TGIF TMI

I routinely facilitate group discussions for work.  Sometimes my group size is 20, sometimes 40, and sometimes 200.  I’ve alluded to this before, but I’m not a superfan of the icebreaker activities.   They’re purposeful in their way, but they’re contrived and inauthentic, which is why I’ve adopted the “What’s Your 1% Skill?” method.

 

Snow. April 8. Super high-quality pic, but see, you’re not supposed to drive while taking photos.  Or is it not take photos while driving?  I was at a red light–don’t judge so harshly, people.

It was snowing this morning.  Yes.  And I wanted to do something that might get people talking about something other than the weather.   I had a 40-size kind of meeting this morning, and it went better than I’d anticipated.  I don’t often, but I sometimes feel that no matter how much I prepare, I remain unprepared.  I went in feeling blind today, but it turned out well, even without the icebreaker.  I work with these really smart, challenging minds, and deep, thoughtful professional conversations were the outcome.  Friday morning felt like an upset victory of sorts for WW.

I’ve had an exhausting week.  For reasons I don’t fully understand, Wednesday night was a tear-filled one for me.  I’ve begun to think about our new kitchen project with my son’s declination in mind, and that sucks.  I never know how or why neuronal pathways connect in the ways they do in my brain, but biology won this week, and I was feeling sad.  I was looking ahead, and I could “see” my older son losing his ability to walk.  I could “see” him fall down and not be able to get up, and I could “see” him wheeling around in our newly-designed kitchen.  Are these daymares?  The opposite of nightmares?  What do we call them?  Because calling them the future makes me kinda pukey.  Definitely teary.  I digress.  I was going to write more about my daymares, but choose instead to answer stupid icebreaker questions posed by titans of business, industry and professional development.  My husband says this is way too, too TMI territory.  He’s probably right, but it’s Friday night and I’d rather be a glib open book than a sincere, pained open book tonight.  Plus if you know me, you know many of these ridiculous answers to banal questions anyway.

What color is your tooth brush?  Pink and white

What is your favorite summer activity?​  Not setting an alarm.  Oh, you mean something active?  Walking or running or watching my little kid play baseball.

If a movie was made of your life what genre would it be, who would play you?​  Comedy.  Obviously.  If I were 20 years younger, Amy Schumer.  She killed it in Trainwreck, and has the nerve to say all the shockingly inappropriate words that we all think, but don’t dare verbalize in polite conversation.  I would die before saying some of the stuff she does, but I laugh my butt off at her performances.  I’m about 97% inappropriate in the way of things I find funny, and this is not news to you, dear reader.

If you could be any flavor of ice cream what ice cream flavor would you be and why?​  Vanilla.  I like vanilla, it’s the finest of the flavors (bonus points if you sang it).  OK, I’ll play along. . .  Vanilla is the base; it’s reliable, predictable, and sometimes it’s amazing. It’s almost never a deal-breaker, and you can add anything to it and make it better.  So I’m vanilla, reliable and generally non-offensive to the masses; my loved ones, friends, and hobbies are the hot fudge sauce and salted pecans.  Sorry if you’re allergic.

Are you a morning or a night person?​  A to the M.

What is your favorite hobby?​  Currently?  Writing this blog.

What is one thing that annoys you the most?​  I have to pick just one?  Ridiculous, untenable mandates issued by autocrats. Make your own assumptions.

What is the strangest thing you’ve ever eaten?​  I eat most anything, but I don’t order weird stuff just ’cause.  I ate raw oysters once.  Not a fan.

What is your favorite thing about someone in your family?​  It’d be impossible to whittle down to one.  My cousin Paul, a/k/a Brooklyn Paulie, has the BEST, naughtiest laugh, and we laugh like complete idiots every time we’re together.  The 2001 Canton Slurpee Incident nearly rendered Paul, his wife Kathy and me unconscious.

What is one of your weird quirks?​  Isn’t that sorta redundant?  Weird quirks?  Who has typical quirks?  If your quirks were typical, they’d not be quirks, aaaaand I think we all understand now the direction we’re headed.  I’m a word and grammar nerd.  Not in my own blog writing of course, but in formal writing.  Please DO NOT MISUSE the word myself.  I will have to break up with you.  It’s a reflexive pronoun; no one can do anything with yourself but yourself.  Don’t ask me to join yourself for coffee.  Can’t be done.  I can’t come to the meeting with yourself; that’s a job for you alone.

Describe your self in 3 words.​  Strong.  Kind.  Funny.

If you could trade lives with anyone for a day who would it be and why?​  Ed Robertson’s wife. You have to ask why? (KIDDING, Honey.  You’re a better husband that I could have hoped for in my wildest dreams and I love you the bestest, you know I do.  I mean that sincerely.)  But I don’t deny my little celebrity crush. . .  Who’d I trade with?  I’ve no idea.  Someone influential in their benevolence and kindness to all.

If you could talk in your sleep what would you say?​  Please let it rain money, please let it rain money, please let it rain money.  And world peace.  And eradication of fucking muscular dystrophy.

What is the first thing you do when you get up in the morning?​  Think or verbalize, “shit.”  Truth.

What is your favorite joke?​  Knock-knock.  Who’s There?  The interrupting cow.  The interrupting co. . .  MOO!  I crack up every time.   I’m not much for telling jokes; I’m a much better story-teller.

Where is the worst place you could get stuck?​  Anywhere Naked and Afraid is filmed.  Kill me now.  NOW.  What are you waiting for?

What is the one thing you own you wish you didn’t?​  Debt.

Describe the perfect kiss in 3 words.​  Really?  This kind of thing is so not my wheelhouse.  Knee-weakening, genuine.

What is your biggest addiction?​   I will eat peanut butter M&M eggs until my face hurts. I might need an intervention for my music hobby.

Do you have a song that reminds you of a relationship if so what song?​  I have a song for every  single detail of my existence.  Currently I’d say I totally heart two relationship songs.  “Take Us Home” by Alan Doyle is one which reminds me of the early years, that new love that steals your sleep because you don’t want to miss a minute.  “Toe to Toe” by Barenaked Ladies is the other.  That one speaks to me about the long haul, the depth and constancy of true love, even when it’s imperfect, which true love is.

This is my hand
Take it now it’s yours to keep
These are my eyes
Look into them and you’ll see
How a rainbow needs the rain
Or it will never shine again
It’s the same for you and me

These are my footsteps
Falling surely next to yours
This is the moment
That we’ve been waiting for
It’s our story now to tell
Raise the curtain, ring the bell
And open up the doors

Hey, altogether we will be
We’re forever you and me
Hey, the sun will show us where to go
Love will give us heart and soul
And take us home

These are my arms
Come to them when you’re cold
This is my shoulder
Rest your head and dream of home
For there’ll nights and there’ll be days
It seems a long, long ways away
But we’ll make it now I know

This is my song
It’s the only one I know
This is my heart
Take it with you when you go
I wanna thank you for the show
No one wants to dance alone
I’ll see you down the road

 

 

I’m convinced that I am stronger when standing in one place
Just sometimes I don’t have the choice

There are instances when I no longer see your face
But I can plainly hear your voice

So we go
Toe to toe
Never knowing what our cards were

Even though
Blow by blow
We can not let down our guard

We should know
That if we show
Just a small amount of kindness

Then we won’t go
Toe to toe
Anymore

Love’s a gamble
They say you can win the lottery
It depends on what you bet

There’s a body of water
Dividing you and me
I’m not afraid of getting wet

So we go
Toe to toe
Never knowing what our cards were

Even though
Blow by blow
We can not let down our guard

We should know
That if we show
Just a small amount of kindness

Then we won’t go
Toe to toe
Anymore

More than half a life away
It’s gotta amount to something

We’re still standing here today
It’s not a hit and run thing
It’s gotta count for something

So we go
Toe to toe
Never knowing what our cards were

Even though
Blow by blow
We can not let down our guard

We should know
That if we show
Just a small amount of kindness

Then we won’t go
Toe to toe
Anymore

How many books have you read so far this year?​  Woefully few.  8 thus far.  I have been racking up the hours reading blogs on WordPress though like it’s my job.

When I dance, I look like…?​  I am suffering some type of neurological event.   I will say that I am a pretty good chair dancer though.

If you were famous what would you be famous for?​  Can you be famous for realizing only in your mid-40s that you’re pretty awesome and that your friends and family who helped you realize you’re awesome are a bajillionfold more awesome than you, and you want the world to know how kick-ass your peeps are?  That.  Or my incredible sense of comedic timing.  Or Name That Tune.  I’m AMAZING.

What is the worst job you could have?​  Something in a factory where it’s repetitive.  Or cardiothoracic surgery.  Tough call.

What is the thing your most afraid of?​  My children or husband being in pain or suffering in any way.  I would do anything to prevent harm or pain from coming to my family.

If you could paint anything what would you paint?​  I would give a million dollars (metaphorically speaking, of course) to paint a fucking straight line and/or not to slop all over every other damn thing but the paint’s actual target destination.

What celebrity annoys you the most?​  If I answer, that would acknowledge and give weight to the individual’s inane celebrity status.  Turn off the TV, change the channel.  Yawn.

What is the most interesting thing you have in your purse/wallet?​  My migraine meds?  Oooh.  No. I know!  A ticket stub from the first of three BNL concerts I attended last June.  Row A, Seat 9.  Frontest, centerest seat in the house.  Thank you, good night!

What is your life long dream?  Living it.  Only with less money and a smaller parcel of real estate.

Have you ever tried to do something you know you would be really bad at, what was it?​  Every craft I’ve ever attempted.  I was terrified to do any public speaking at first, but now I’m pretty good at it.

On a scale of 1 to 10 how “cool” are you?​  See how this dial goes up to 11?

How long does it take you to get ready in the morning?​  Between showering, dressing, eating, ironing, preparing breakfast for my children, and hair/make-up it’s about 1:45.

What is the one thing you have always wanted to do?​  Write a song on guitar.

What TV cast would you want to save you in the apocalypse?​  Ed’s Up.  The Walking Dead would be a close second.  I think their experience says it all really.

What store do you shop at the most?​  Target.  I dare ya to get out of the red-bullseyed monster in under $100.

What supply in your house is running low?​  Patience.

What is the most delightful word you can think of?​ Delightful.

What is your least favorite beverage?​  Beer.

If you were stranded on a tropical island what 2 things would you want with you?​  Who can answer this?  I’m an ass if I don’t say my family and I’m a liar if I don’t say my fully-loaded and always charged iPod.  Two.  Both true, by the way.

What is the first thing you notice about someone when you first meet?​  First instantly?  Face, as in eyes/smile.  First generally?  Communication skills.

What was your favorite book growing up?​  Charlotte’s Web.

​ What compliment do people give you the most?  That I’m helpful.

If you where running for office what would your campaign slogan be?​  I will lie to you less than any of the other assholes against whom I’m running.

Hiding Out

One of my recently assigned Blogging 101 tasks was to develop a post from a comment or feedback I’d left for another blogger, to expand my response to their post and/or link back to it.  Something like that.  I’ve discovered some super slick, talented writers in the two weeks I’ve been at it here, but I’m going rogue on the assignment.  I know, right?  I’m usually such an obedient little student.  

I received feedback, game-changer feedback from fellow bloggers. I giggled.  I teared up.  I yelled “holy crap!” out loud.  I sighed in deep, grateful contemplation.  But it’s not them to whom I will respond here, though they’ve inspired me to be sure.  I’ve responded to their unbelievably generous comments, but my responses will never adequately convey the depth of my gratitude.  And why do I type “convery” EVERY SINGLE TIME I attempt to type “convey?”  Same goes for langauge (NEVER, EVER get it right) and reiumbursement (just once, please?).  Ahem.

Instead, I’m going at this in reverse.  A comment that resonated with me in a big way was left by one of my Barenaked Ladies tribemates, who wrote this:

I don’t share on any social media like I once did, and people said that they missed me. I guess the reason I don’t share any more is that I am so concerned about the image my extended family has of me. Once I became Facebook friends with all my brothers and sisters in law and my husband, I don’t want to share my feelings. I feel too exposed. It’s funny how I can share with my BNL friends or theater friends, but I can’t share with the ones I care most about.

She is not alone. She got me to wondering, why do we show only pieces of ourselves to others?  Why do we hide from, or if not hide, not reveal our whole selves to those who allegedly know and love us best?  Why does the blogosphere know more about my feelings on MD than my own mother?  How is it that my tribe of #Ladiesladies (yes, the hashtag is necessary as #Ladiesladies is a real thing–check Twitter if  you doubt me, go ahead, I’ll wait) knows me better than some of the friends I spend time with routinely?

My husband knows I’ve been blogging over a year now, but he only recently asked me for my web address.  I’ve sent links to my parents, but have received not one syllable of feedback from them.  I have a huge passel of in-laws who have read a post here and there, but I don’t talk much to them about my son’s muscular dystrophy.  I don’t talk about it much at all to the people who should be most invested.  That’s weird, right?  My family doesn’t find me inspirational or funny or especially interesting–just Wendy, and this blog?  It doesn’t exist or is deemed self-serving or folly.  Maybe both.  It’s also not that they don’t care, let me be clear, I know they care deeply about us.  It’s not that I need to fulfill a role as the “MD mom” or have that define me within my family or friend groups, I mean, I’m the only one, so obviously the role is no one else’s. It’s not essentially me, but it has become a facet of my essential being.  Why don’t they know it?   Why don’t they know how my kid’s status has changed every, single thing for me?  They do. Do they?

Is it the blissful anonymity the internet affords?  Is the internet invisibility cloak why I can share so openly online?  Where I can drop a comment with my keyboard but not have to speak the words?  I can put something out there, but not have to respond NOW or ever really should I elect not to, as a traditional conversation would demand.  

Online we get to pick. Online I get to share what I want, on my terms. I geek about music with my music people, because they GET ME musically. I geek about writing with writers because they GET ME as a blogger. I geek about MD with, well no one, ’cause well, who would celebrate that?  So I drop my MD ruminations right here, neatly packaged and mostly grammatically correct, and I move onto tasks like laundry.  Maybe that’s it–we seek validation and celebration from sources we are sure to find it. My nearest and dearest don’t spend hours selecting vocabulary words or parsing grammar; they don’t care to discuss why the bass/piano outro closing Brian Wilson is mesmerizing (but they totally should, come on!).  It’s not that they don’t care, they don’t care like I do.  And that’s OK. Right?  Right??

I know who will care though, and I gotta go tell ’em!  Right now.  When you find your tribe, love them hard.  

  

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.

Divinely (Un)Inspired

I’ve put off developing this post for quite some time. I recently enrolled in Blogging U’s Blogging 101 course, so naturally this is when I hit my first real writer’s block.  I don’t know why I’m surprised.  If I’m being completely honest with you, I’m not surprised.  Because I’m a good student, and exceptionally compliant when it comes to deadlines and expectations, I’m annoyed, sure, but surprised?  Nope.  I fully anticipated that having specified writing tasks would deliver me to this very moment: the moment when my brain decides to go all “meh” on me.  This is why I’ve avoided it til now.  ‘Cause I’m intuitive like that.

Today’s assignment is to identify your audience, and to publish a post you’d like your ideal audience member to read.  I’ve had the un-freaking-believable good fortune to have had two of my idols read pieces I’ve written, but I don’t write for them exactly.  I have a handful of readers and friends who follow me here because blogging’s quite an efficient vehicle for checking in.  But I’m not sure I have an audience, a type, and I’m vexed as I ponder this.  So I’m supposed to pick one person to write for tonight, and no, it’s not YOU.  Geez, get over yourself, y’all, and don’t read too much into this, m’kay?  No, it’s really not you, and you will just have to trust me on this.

I’ve had an inner pretend dialog going for a really long time.  I alluded to it some time ago in a post I wrote about the wonderful/terrible things people say to you when they learn your child has a super shitty disease.   I am not a religious person; the Catholic church and I broke up when I divorced my first husband.  I didn’t get how spending a couple hundred bucks and having three people vouch for me on some affidavit could result in a proclamation stating my marriage never existed.  Oh, that shit was real, people, bad shit happened.  Having survived it was something of a badge of honor, so I couldn’t get behind the sweeping it under the carpet for cash system.  YES, absolutely, I am minimizing, and YES, I know it’s not that simple.  Even I am not that big a creep, but the concept of annulment in the twenty-first century was the deal breaker for me.  And plus, let’s be honest, I was totally on birth control because 1) I had really bad acne and it was supposed to help, 2) female issues, and–brace yourselves here–3) I had sex before I was married. *gasp!*  AND I ate meat on Fridays once in awhile.  I was never exactly what they were looking for anyway because I lean pretty much toward the left side of most arguments, but for a period of time in my young adulthood, I did enjoy going to mass, contemplating the priest’s homily and being part of the fellowship, if not the rules of Catholicism.  The golden rule is a damn good one, but my experience with religions has been that mine is better than yours, you’re wrong and I’m right, and there’s exclusion along with inclusion in equal measure.  Maybe more.

There are a million, billion things I cannot explain.  I’m not saying there isn’t some higher power out there pulling strings and creating events, putting people, myself included, where he/she decides we should be.  I’m not so arrogant to think I know more than the universe.  I’m a smart cookie, but I’m the teensiest cog in the machine.  Infinitesimally sub-teensy at that.  I’m wise enough to know that I’ll never know how much I don’t know.  I’m just some girl from Milwaukee.  Just some girl who doesn’t believe that showing up in a beautiful church on Sunday renders anyone a better or worse human person.

I have friends who find tremendous joy and are provided great comfort from their bibles and their churches.  I know some of the best examples of the human species the earth has to offer–I am so damn lucky to call these people my friends–but I just never felt that electric a connection with a church.  Not like that.  I’m flip about some things (yeah, see previous paragraphs for examples), but I’m not flip about others’ beliefs.  Church and God matter to people, and I’d never tear that down, but I’ve never bathed in that same light.  A part of me wishes I shared that faith, that devotion.  A wonderful friend of mine’s rabbi says a prayer for my son every week.  I wept when she told me she requested this for our family, and I ugly-cried when she went home that evening.  Her faith is so essential to her being, and she brought us into her circle.  I will never be able to thank her properly.  It would be so great to think that a power–God, a god, someone, something, anything–had the capacity to FIX FUCKING MUSCULAR DYSTROPHY.  Some days I think it would be a dream come true to have the kind of devout belief that removes control from our earthly hands.  But I just don’t believe the meme–

Soooooooooo. . .  my inner dialog.  If God/a god is responsible for everything, including healing all illness, doesn’t it follow, or more accurately, doesn’t it come first, that a god/God causes it all?  You hear people say, “What kind of god allows (insert tragic event, accident or illness here) to happen?” all the time when a tragic event, accident or illness occurs.  I don’t think a god wants tragedy any more than I think some higher power wanted my son to have MD–he was an eleven-year-old boy when diagnosed–MD is certainly nothing he deserved nor is it some type of punishment.  I don’t think a higher power wants convenience store clerks to get held up at gunpoint.  I don’t think a higher power wanted Carolina to lose the Superbowl, and I don’t think people choose poverty.  You hear people say they’re mad at God for making something happen or denying something else.  I don’t blame God for MD and I don’t think a god can fix it; it just is.

All this mess is a draft in consideration of today’s homework, “Who’s my audience?”  So who is it?  I think maybe my audience is small, so small, I think it’s an n of one.  Maybe my entire audience consists of one mom, the mom of one really terrific 12-year-old kid.

 

Lyrics I Wish I’d Written and Sung (Alternate Title: Lyrics I Wish I’d Written and Sung and Also I Really Wish I Could Sing)

I began a really angry post about the end of our visit to the dentist today.  The kids went to use the restroom after their teeth cleaning, and while they were out, one of the hygienists asked after my son’s health status.  I said he was mostly fine, but that there were days, mercifully few in number, where he floated out there seemingly grasping for a life preserver.  She replied in an oh-so-chipper (read: utterly clueless) tone, saying that it was OK, at least it would get better.  Ummmm. . .

So you have that millisecond where you think, “Do I?  Should I?” and before you know you’ve even answered your internal inquiry, you hear yourself saying, “Actually no, it won’t get better, but we are trying to help him find ways to make things as easy as possible.”

And then the allied health professional (the restraint I’m showing NOT putting fakey quotes around professional here. . .) responds by saying, “Well, they’ll probably have a cure in like ten years because of all the medical advances.”

“Like ten years??” Well, wouldn’t that be the fucking awesomest?   It would.  But in the meantime–those of us grounded in reality?  We hope for the best, like always.  We love like crazy, you know, like it’s Thursday.  We understand that people mean well and try to be upbeat and supportive of things they don’t grasp fully.  People say things not to be dismissive, but because they HAVE TO ASK, even when they don’t actually always want to hear the answer.  It’s OK.  I get it.

So instead of the direction in which I began, I edited.  Edited heavily.  And by heavily, I mean I pretty much started over.  I thought instead of words that do make me feel upbeat and supported–words to some of the songs that sing my stories.  Without further ado, I present another episode of things I wish I’d written.  PS–I think the title of this post might just be my favorite yet. I did write that all on my own.

Hide me in a hiding place where good sense never goes.  Come ON, it’s genius, and we’ve all hidden there. More than once, probably more than twice. . .

Love will give us heart and soul and take us home. I loved it so much I bought the shirt.

I want more than ever before, I want gravy on satisfaction.  (OK, I kinda wrote that one. . .)

Why would I fall back into that shitstorm, I mean what went wrong?  Move forward, people. And we’re walking, we’re walking.

Our secret’s the star of the show.  Are you kidding me?  Every new love, every first everything that makes your tummy flutter.  You think you’re the only one who’s ever felt that whatever it is that steals your breath and makes your heart beat like a hummingbird’s. *sigh*

Drunk on wine, I’m amazing.  I totally am.  (BTW, that’s not at all the message the song intends.)

I’ve been dumped, I’ve been kicked around, now I’m ready for the big rebound.  Pretty well summed up last year, and became my rallying cry and MD/OT/PT anthem.  I would bet I’m the only person on the planet who cried during its performance in concert last tour.  Four times.

Bye-bye self-respect, I haven’t had much of it since you left, I missed out on the best of you.  He sure did.  Ancient history, but I still love the lyric.

When I come home late at night, and you’re in bed asleep, I wrap my arms around you, so I can feel you breathe.   Who doesn’t love an ’80s hair band power ballad!!  I still love this lyric, which transports me to my early 20s when insecure me longed for someone–anyone–to feel like this about me.  Long after the ’80s, I DID.  Now I know better than just hoping for an anyone, but this line is no less sweet to me.

Love’s a gamble, they say you can win the lottery. It depends on what you bet.  I won.  No, not the PowerBall.

All I want is a place in your heart to fall into, all I need is someone to love, and tonight it’s you.  Sing it to me, Robin Zander. A very intoxicated 22-year-old me met the Cheap Trick front man in a tiny little bar one night, and he was indescribably cool. He was way more decent to drunk, young me than I am sure I deserved.  That voice!!  Cool and kickass and loaded with enough swagger to knock you right out.

Anyone perfect must be lying, anything easy has its cost, Anyone plain can be lovely, anyone loved can be lost.  Perfection.  Right?

It’s hard to keep your mouth shut, harder still to make noise. But we can’t have the perfect 20-20 hindsight that our fate enjoys.  Word.

All the world’s indeed a stage, and we are merely players, Performers and portrayers, Each another’s audience outside the gilded cage.  Limelight changed my life. While I love this line, what I worship most about this song is one singular note in the guitar solo that screams, yet somehow rings mournfully while it hollers against Geddy’s bass line leading back into the chorus. GOOSE. BUMPS. Still. Every single time.

Worked out that I’ve probably made a mistake for every thing I’ve done right.  Probably more in favor of the I screwed up side of the equation if I really thought about it, so let’s not!  I would D. I. E. to hear this song live.

It’s the perfect time of year, somewhere far away from here. I feel fine enough I guess, considering everything’s a mess.  Sure, we launch our lingerie onto the stage when this song is played, but it’s actually a happy-sounding little tune about depression.  To me, this lyric perfectly captures that malaise, that feeling of complete inert-ness, when you know enough to know you should want to get out of bed, but just don’t believe you possibly could.

I will shoulder the weight you’ll need. I will shoulder the winter snow.  What we do to honor those we love, and to help those we love work through loss.

The odds are that we will probably be all right.  And then sometimes the odds tell you to go fuck yourself.

But I’ll throw my hands up and drag myself through, And I’ll kick my feet cause I’ve learned to crawl.  Perseverance.

Despite the pretty dress and curls, you don’t throw like other girls, you follow through.  Give it up for strong, smart girls, even when we are breaking your heart.  If we are breaking your heart, you probably had it coming.  You want to come on back?  You gotta earn it, pal.

I’ll have a happy new year next year, ’cause things aren’t going good ’round here.  I discovered this song in June, 2015, and glommed onto it like it was my job, and with it, pinned my hopes for a better 2016.  So far, so good this spin around the sun.

I get a feeling when I look at you, wherever you go now I want to be there too, They say we’re crazy but I just don’t care, And if they keep on talking still they get nowhere.  I LOVED the Tracey Ullman version of They Don’t Know, and I heard it on the radio on my way home from one of my first dates with my husband, after not having heard it for probably 15 years.  I SWORE It was a sign. Tom was Paul McCartney to my bathrobe-clad (though not pregnant) Tracey cart dancing in the grocery store aisle.  They DON’T know!  And when you’re crazy in love?  You’re certain you’re the only one who’s ever felt that way, that completely, that perfectly.

Don’t know what’s got ahold of me, it’s greater than gravity. *drops mic*

Day Three of My Not-Resolutions

Why I Am Ill-Informed:  There are 20+ different subtypes of limb-girdle muscular dystrophy.  There are at least 30 subtypes of congenital muscular dystrophy.  My kid has one of these.  He has something, but we don’t know which particular something, and we won’t know more until we OK the muscle biopsy.

One of my not-resolutions for the new year is to learn more about MD.  Thus far I am KILLING the not cursing at work thing, but I return to the office tomorrow for the first time in sweet ’16, so that declaration might be premature.  I did finish a book I started yesterday, so that’s a victory away from the phone folly.  Fingers to the keyboard, I began my MD knowledge quest precisely where I dropped it mid-December:

And yeah, I pretty much stopped here again.  The (not) super helpful, (not even remotely) self-explanatory diagram below is on the Muscular Dystrophy Association website’s Congenital MD page.  No, not on the research physicians page or the laboratory researcher’s page of arcane medical facts, this was on a page for THE PUBLIC.  Patients and families of patients come here to learn more about the disease.  What the hell?  I’m not as academically astute as many I admit, but neither am I a simpleton.  I earned two college degrees in an allied health field before I turned twenty-three–I did my time in academia, and I have more than a cursory pass at reading scholarly research.  Overall I land somewhere on the right side of the bell curve in my intellectual capacity to understand the world.  Not this segment of the world though, I guess.  Holy crap.  After a few readings, I came to understand what the graphic demonstrates, but remember the other day when I said that I can’t ride out “ignorance is bliss?”  Yeah-huh I can.  It’s only January 3, so I have eons to make good on my not-resolution to learn more about MD.

The most helpful point I read today was this:

Unclear diagnoses and uncertain prognoses are common features of CMD, requiring well-coordinated multidisciplinary care and strong patient-provider relationships throughout the changing course of the disease.

Yep.  THAT?  That much I get.

 

Resolve 

Dear 2015,

It’s over between us.  I just don’t think it was working out.  I know I’m supposed to be all like “it’s not you, it’s me,” here, but you know what?  It’s you.  You’ve been a real bastard, so I’m leaving you.  Good bye.  Don’t call me, don’t text me, don’t even think about just stopping by sometime–we are NOT “still going to be friends.”  Who says that anyway?  Honestly, who ever really means it?

You made me a blogger, an imposter writer, but blogging saved my sanity sometimes, and I thank you for it.  Sure, you brought me another year of decent runs and found me a way to manage my hip pain.  You gave me only two truly hideous colds and no pneumonia or bronchitis.  Go, you!  You connected me with friends and provided opportunities to travel to see my friends.  I got to revel in my favorite music.  I even got to spend time with the band on five occasions (insert teenage girly shrieks and squeals here!).   You allowed my little guy to find his place in the world–the pitcher’s mound–and provided us a platform to develop the talent he has.  You reminded me what a generous, caring guy my husband is–the guy who built a wheelchair ramp for our house for one friend for one day because he refused to let a thunderstorm limit the guest list for our annual outdoor barbecue.  I consider myself a fairly aware person as it relates to expressing gratitude.  It’s not that I necessarily needed the reminders, but am happy to have had them nonetheless.  I am.

But you took.

You took hope.  You snatched this mother’s hope that her son would grow out of it.  Now we know he never will, because having muscular dystrophy means that each day is his best day ever, and while therein lies some type of lesson about seizing the day and all that, the heartbreak of knowing defeats a mother’s gift of naivete.

You took our dog.  It was Izzy’s time, and I thank the stars and you, 2015, that she got to pick just when and how she’d make her leave.  But I miss her.  And I hate being the one not letting the family get another dog when their whim hits.  Which is pretty much every time anyone sees a cute (or not cute) puppy anywhere, anytime.

You took my confidence in my ability to lead.  You beat me down and beat me down.  Beat.  Me.  Down.  I kept clawing back up, trying to anyway, but I don’t believe I can ever regain that before-level confidence.  My capacity to lead from within has been eroded by external forces (hello funding cuts) to be sure, but you made damn sure that I was weakened internally.  Just how much can I get back?  ‘Cause I will.  Just not sure how.  Or when.  Or to what level.  There are times I even wonder why.  But like the song says, I will get back up.  Probably.

You took precious time away from family as my husband’s job required him to work all the holidays.  Continued cuts to state and thus local budgets meant that his employer was unable to attract and retain qualified staff who were also willing to endure filling in crappy second and third shifts.  He is a family man through and through, and regrets having missed holiday moments with his sons and extended family.  You cannot ever manufacture or recover time lost.  The city owes him and our boys a debt it cannot and will not repay.

I did purchase for myself the carpe diem socks I referenced in November.  I am wearing them as I type.  The whole world makes resolutions for the new year, but I’ve never been much good at resolve specifically for the new year.  January 1 is a pretty arbitrary day.  BUT I will say that because the collection of days between January 1, 2015 through today generally speaking was a total jag, I am resolved not to let 2016 beat me into a gnarled, bloody mess of submission.  Quite as much.  No “I’m going to work out four days per week or lose 10 pounds by March” kinds of resolutions sure to be broken by January 4 will be proclaimed.  Instead, a few items on my radar to be carpe-d in 2016–

  1. I will play a musical instrument again.  I took flute lessons three summers ago after a lengthy hiatus, and the challenge overwhelmed me.  It was nearly impossible to carve out sufficient rehearsal time, and tough to unlearn what I’d done less well in the past, so I didn’t much move forward.  My instructor suggested a different instrument, and I’m feeling like maybe before I die, my inner six-string shredder may have to give it a go.
  2. I will learn more about muscular dystrophy.  “Ignorance is bliss” is a wave not to be ridden ad infinitum.
  3. I resolve might try to swear a little less like a drunken sailor in the workplace.  Might.  Shit.  I said might!
  4. I will try to keep my personal interests (how many times must I remind you that obsession has just too negative a connotation?) a little closer to my head and heart and a little further from my lips.  But I will NOT curb those personal interests in my head or heart.  Carpe diem is the theme today–pay attention here, people.  Geez.
  5. I resolve to help my older son find his passion.  Or at least facilitate that, if that is even possible from an outsider’s perspective.
  6. I will be more direct with people.  I am a suck-it-up kind of gal, and I allow people to treat me less well than I deserve.  Further, when people do act like jerks, I’m disinclined to call that out in lieu of peacekeeping.  I am a hell of a diplomat.  Or is that doormat?  I have a friend whose honesty is inspiring.  I’ve been off my game, and she’s called me on it.  Not in a mean way, but in a way that demonstrates her affection, her genuine care and concern.
  7. I will step away from my phone and spend more time with books.  And people.  Well, with some people. . .

For 2016 I resolve to do my best with me.  There is no way to make all the people happy all the time, and no shortage of people willing to tell me just how disappointed they are in something I have presented or written.  On the sunny side of the street however, I have received these incredible compliments–these are words that actual people have said to me–and I am going to begin 2016 by reminding myself that kindness is greater than discontent, and happy is greater than sad, and seizing is greater than sitting on life’s sidelines.

“I read what you wrote.  It’s good.  You have a good voice.”

“Wendy, you are the best of all the people ever.”

“I’d read your blog even if I didn’t know you.  It’s good.”

“It’s an honor to know you, Wendy.”

 

Who says this stuff?  To me??  I love you people, I do.  Cheers to 2016!

Summer Camp

Remember when you were young, and the Jerry Lewis Labor Day Telethon dominated your TV viewing?  You don’t?  Well, I guess that means you’re young then, so good on ya, pin a rose on your nose.  For those of us of a certain generation, this television event ended your summer.

You had just the three major networks, and maybe if you had a good UHF antenna with just the right amount of aluminum foil, you’d catch two independent channels.  Pre-teen me was always cheesed that I was forced to spend the entire weekend being able to watch the telethon and nothing else because it was all that was on and it was on all the time.  (Insert angst-y, petulant huff here)  Pre-teen me was kind of a jerk, and in retrospect, lazy as hell because it was Labor Day weekend, you dope.  You could be playing outside or reading a book, playing your flute or saxophone, whatever.  The TV wasn’t a required element for the holiday weekend, except that it was.

The telethon featured the man of the hour(s), Jerry Lewis, starting strong, looking all dapper, all Vegas and stuff in his tuxedo.  He introduced stars of all magnitudes–the BIG stars in primetime with B- and C-list celebs a little later and/or a lot earlier in the dayparts–they appealed to us for pledges to help Jerry’s Kids.  I never understood how or why he laid claim to these kids, but I remember just not getting it.  Why were they Jerry’s kids?  Didn’t their families have anything to say about whose kids they were?  At the end of the marathon, after the tote board had been updated once and for all, the host looked disheveled but remained enthusiastic, albeit undone and exhausted in his jubilation.  He raised a ton of money for his kids.

I remember watching kids in wheelchairs roll onto the stage and share their stories with the celeb host and co-hosts.  I remember the telethon as the second television experience that moved me to tears–not for my own, but shedding tears for someone else’s pain or sadness (the first was Brian’s Song–I know, I have a weird memory for things).  The telethon was the first time I’d ever seen anyone in a wheelchair.  I grew up in a small town, and so far as we knew those kids were made for TV.  I cannot recall seeing a single disabled child in my school or in my entire town for that matter.  Those kids were scary to my friends and me, but hey cool!  Thanks to this telethon apparently, those kids could go to a special summer camp.  It was all so far removed from my little life.  The phrase “Jerry’s Kids” did not engender much from my group of friends except ridicule and snide giggles.  We were such little assholes.

Well, holy shit, guess what came in my email today?  Yep.  My son’s interest form for MDA Summer Camp.  MY KID is one of those kids.  I am not his mom though; I am instantly the pre-teen back in my childhood home watching the telethon locked somewhere in the mid-1970s.  This time though, the tears are mine.

 

Grief-Bacon

A friend of mine calls Facebook the devil. I disagree. Were it not for Facebook, I’d never know that kummerspeck is a thing (FYI, kummerspeck gets autocorrected to jumpers peck–like that’s a thing someone would say, Autocorrect, you loser.  I’m sure. “Hey, did you notice Helga’s jumpers peck?” said no mean girl Teuton ever.) See, kummerspeck is a German word with no English translation, and I learned this because of Facebook. Thus, Facebook cannot possibly be the devil, as it’s educational.  Thank you, Grammarly.

And this is related to a muscular dystrophy diagnosis in this way:  Doritos, Oreos, mashed potatoes, along with an entire pantry of foodstuffs not ending with the “o” sound are killing me. In the US I think we call it stress eating or soothing with food or some pop-psychology-esque euphemism, but the end result is kummerspeck.  Go, Germans on this one!  You sound like you’re yelling at us when you talk, even when you whisper, but with respect to kummerspeck?  #nailedit  And I got me some damn kummerspeck (which is now in my iPhone’s text prediction window, which is freaking awe-some). Not a lot, not yet, but it would will be easier than falling off a log to keep adding to my store of grief-bacon if I don’t check myself.  Crap.  Scheisse.  I’m killing myself with “scheisse” here, people.  Linguistics.

In other news, and in a REMARKABLE SHOW OF PARENTAL RESTRAINT, I refrained from calling out my son’s dick move this morning, instead going with “jerk move.”  By comparison, it doesn’t yield the same mouthfeel satisfaction, the word “jerk,” but he’s 12, and I’m the mom, allegedly modeling socially appropriate, adult behavior.  This parenting gig is NOT for the weak.