#444

I voted yesterday.  Four hundred forty-fourth in my ward.  Maybe my new lucky number?

I remember learning about civics and government as a middle schooler. I was a nervous student of the social sciences; I recall my teacher imparting, with what I perceived to be immense gravity, the import of what we were learning. I wanted to get the facts right.  I mean, sure, I constantly pursued the ‘A,’ but how could I let down our founding fathers? Or worse, the suffragettes?

I’d perform poorly now on tests of the subject matter that captivated and awed me as a young teen. This is not a point of pride, but fact. I’ve arrived at the juncture of life where I have forgotten more shit than I’ll ever learn from here forward.  Also not a point of pride, but fact.  My short term memory is breaking up with me, and it’s getting ugly  She doesn’t even want to be friends.  *sigh*

I distinctly remember my seventh grade teacher telling us that participation in the democratic process allowed us to keep the biggest, most important secret we’d ever have.  She told us that no matter what, no matter who, no matter where, no matter nothing! that no one, NO ONE, could make us share the names of the candidates for whom we voted.  You could be thrown in a torture chamber, held at gunpoint, but no one had any right to force you to divulge your vote.  Being able to vote elevated you into a secret society, and the secret was yours to hold forever.  Pinky swear, cross your heart, hope to die, stick a needle in your eye.

Pre-teen lack of guile, middle school innocence?  Call it what you will, but her lesson stuck.  I thought it was so, so, so what?  So neat that one day I would get to vote, and you could ask me, but I’d never have to tell you who I voted for.  Even if you said please.  “Neat” is how I came to think of my little secret.  I still kinda do.

You know how I voted yesterday though.  I can invoke my nifty privilege to keep mum, which I intend to because middle school social studies class, you guys!  But you already know.

I hope you voted yesterday.  Social media and 24-hour news networks allow few secrets to be kept these days. You don’t have to share on which side of the aisle you sit, stand, or filled in those little Scantron circles–you too get to keep that private.  Forever.  I slept poorly last night–want to watch/can’t watch/have to check/don’t want to know election returns returned–stole my sleep, but I woke today with a smile.  And the teensiest ray of hope.

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One of my heroes, HEROES, Jenny Lawson, The Bloggess, sharing reason 348,734,992 why you should vote.

Kids Who Bring Light To This World

Number One Son was inducted into his school’s chapter of the National Junior Honor Society last December.  Understatement and underenthusiasm being two of his special gifts–he IS a seventh grade boy after all–I knew little of what to expect.  Students were selected based on their grades, there was an application asking for community service and outside interests and activities, and later a confirmation and invitation to the induction ceremony.  This was the sum total of my process knowledge.

It was a bigger deal than expected.  The ceremony itself was solemn, thoughtful.  Middle schoolers carried a gravitas I didn’t know they knew of themselves.  There were formal speeches, candles, blood signatures on parchment (OK, pen on paper), and an oath upon their swearing in.  During the principal’s address at the ceremony’s closing, she spoke to the members, inductees and audience about leadership, about doing the right thing for the greater good.  She spoke of the rancorous presidential campaign and election, and the divisiveness it engendered.  That we were at odds with ourselves, we citizens, and how she saw in these children, a light. These were kids who bring light to this world, she announced.  After a regular day, it can feel burdensome to turn it back around and head back to school for an evening function (although I don’t believe she used the term burdensome; I’m paraphrasing here), but how the light these kids, MINE included, share with the world was uplifting and motivating enough to make returning for an evening function a joy.  You know I had tears in my eyes–it’s how I roll.

Saturday marks exactly two years since the tall one was diagnosed with neuromuscular disease.  I’ve not spent one single day of my life since then not wishing otherwise.  I would do anything, anything!, to make things easier for him.  When we work together on his OT core strengthening exercises, I’d love for him not to look at me and ask how it’s so easy for me to position and move my body the way I do.  When I hold my hand stock still, I’d love for him not to tremor and twitch as he compares.  I’d love to watch him pop up from a seated position and not have to rely on a four-point stance.  Simple movement that unless you’ve experienced injury, is easy, much taken for granted.  I’d love never to hear him slam the piano keyboard in frustration because I JUST DID IT YESTERDAY, WHY CAN’T I PLAY IT NOW??

I crack wise here in these pages, and my posts are not always MD-specific anymore.  I now paint with broader brushstrokes here in my blog–I write not only to rant and vent about muscular dystrophy, but also now to (I think, OK I hope??) entertain.  I will try to take my kids’ school principal’s words to heart and try to share light instead of the bleakness that blanketed me two years ago.

Through my broken brain and fussy keyboard, I’ve shared stories that have actually helped people.  I did something!  I’ve helped raise funds for the MDA; I’ve made people laugh and cry, and I don’t know any better compliment than someone saying, “Hey, I liked what you wrote about (insert any of my random, inappropriate subjects here), can I share your post with my friend/sister/cousin?”  YES!!  I’m never going to win a Pulitzer Prize or be featured in a Top 10 Barenaked Ladies-Parenting-Baseball Mom-Profanity is Fun-Muscular Dystrophy blogs compilation, and that’s OK. I’ve carved out my own little niche here, and it fits perfectly.


By now, y’all know I pretty much make my own rules here.  I mean, cake and margaritas appear in no Emily Post etiquette book or Pinterest wedding board for first anniversaries, and I totally owned that one last year. Why, just today, I received a beautiful cake and touching card from my friend and co-worker Cindy in recognition of the anniversary.  She felt tequila would be inappropriate in the workplace (for the record, I find margaritas always to be correct).  So I move to make the non-traditional second anniversary of my kid having a shitty disease gift a private #Ladiesladies-only Barenaked Ladies concert with obviously, a personal serenade of Did I Say That Out Loud?  Hey, I asked for a cake, and my friend made it happen, so there’s hope!  She remembered a year later, and that’s gotta count for something.  You gotta keep the faith, people!  Not to put too much pressure on you, Cindy, but you nailed Year One’s anniversary gift 363 days in.  So I’ll wait real quiet-like for the concert announcement. I’ll just be over here, ya know, just hangin’ around all patient and stuff.  I violated my no bakery rule, and ate one-fourth of the cake for dinner tonight. Not with. For. Happy anniversary to me. Or something. 

The traditional second anniversary gift is cotton.  So for The Deuce, I’m going to share again the shirt my kid helped design for our MDA Muscle Walk last year.  Yeah, I cried when he developed the text.  Like his NJHS induction ceremony, he held gravitas I wasn’t prepared to meet.

img_2169I swiped a graphic which read A Year Changes You A Lot for my one-year anniversary post. Yeah, it does.  Thank you for rolling with the changes with me here.  I’m such a work in progress. I’ll never celebrate a January 21, though I will try to face it with more strength and light.  Maybe my kid and I have more in common than I thought.  My love for him?  Still, always, greater than gravity.

47.5% Of You Aren’t Going To Like This

Stealing from Jon Bon Jovi today–

I came of age in the ’80s, and Jon Bon Jovi had been an early and long-standing celebrity crush.  As his fame and influence grew, the excess of the ’80s ebbed,*sigh* and the songs he wrote began to embrace a more socially conscious bent than earlier recordings.  SiriusXM unveiled a limited run Bon Jovi station last Friday, and I’ve been all in.  Regretfully, my FABULOUS ’80s hair (and y’all, it was AMAZING, yes again with the all caps) will remain in the ’80s, but I’ve enjoyed reviving my musical youth this last week.

I was driving today between schools, and We Weren’t Born To Follow came up during my commute.  It felt like a direct message from the satellite to my brain.

This one goes out to the man who mines for miracles
This one goes out to the ones in need
This one goes out to the sinner and the cynical
This ain’t about no apology
This road was paved by the hopeless and the hungry
This road was paved by the winds of change
Walking beside the guilty and the innocent
How will you raise your hand when they call your name?
Yeah, yeah, yeah

We weren’t born to follow
Come on and get up off your knees
When life is a bitter pill to swallow
You gotta hold on to what you believe
Believe that the sun will shine tomorrow
And that your saints and sinners bleed
We weren’t born to follow
You gotta stand up for what you believe
Let me hear you say yeah, yeah, yeah, oh yeah

This one’s about anyone who does it differently
This one’s about the one who cusses and spits
This ain’t about our livin’ in a fantasy
This ain’t about givin’ up or givin’ in
Yeah, yeah, yeah

We weren’t born to follow
Come on and get up off your knees
When life is a bitter pill to swallow
You gotta hold on to what you believe
Believe that the sun will shine tomorrow
And that your saints and sinners bleed
We weren’t born to follow
You gotta stand up for what you believe
Let me hear you say yeah, yeah, yeah, oh yeah

I’ve avoided social media since the election.  Until I can read Facebook and not cry or not question how 59,821,874 voters thought this was a good idea, I feel it’s best to avoid setting myself up for failure.  I know I’m smarter than that, not to allow myself to be sucked in and goaded into asserting a rebuttal, but I just don’t have the strength in me yet.  If you’ve read one note here, you likely have gleaned my political leanings.  I don’t have to harp on it for you to understand my despondency at our president-elect, and I’m not going to apologize if you don’t like this or me for that matter.  I am one of those people who says and truly means, “We can agree to disagree.”  I don’t enjoy confrontation, but I’m not going to BS you either to avoid it.

My son, you know, the one who’s got a progressive neuromuscular disease?  The one who looks a little different, and is going to lose his ability to walk?  The one who’s now anxious that his country whose president-elect mocks disabled people?  Yeah.  59,821,874 voters were cool with that.

My relative, you  know, the one who’s been sexually assaulted? (I know, no, you don’t)  The one who’s endured being violated against her will?  The one who’s crushed to live under a president-elect who bragged that you can just grab women by the pussy?  Yeah.  59,821,874 voters didn’t flinch at that.  They stood in tacit accord that it’s OK.

My students, you know, the ones from Mexico and the ones who are Muslim?  The children terrified their families are going to be sent back?  Yeah.  They’re holing up at home, and some parents are advising their daughters not to wear their hijabs to school for fear of assault.  59,821,874 voters must be ecstatic.

I didn’t love the Democratic candidate, but her behavior and rhetoric didn’t inspire abject terror and nausea like his did.  See, right now?   Right now it feels to me like voting for him means that you’re supporting these extremist ideals.  Some of you are, and I hear you’re having quite a party on Facebook.  Build a wall.  Banish entire peoples.  Kiss women without asking.  Grope them.  I don’t understand how mothers of daughters could possibly have voted his way, but I don’t expect to change the minds of any mother or father.  We can agree to disagree, but I can’t agree to understand.

But I’m teaching my children that members of their family voted for him, and that they will have to decide for themselves with whom and with whose beliefs they will align.  “You know how I feel, what I believe and stand for, and you will have to decide for yourself how you feel.  I can’t tell you what to think or feel nor should anyone else; only you can determine that.” I told my firstborn words to that effect last night.  You know what I am grateful for in this election?  It forced me to have really hard conversations with my kid.

There’s much more to politics and policy than campaign behavior, and I’m stuck there right now–I fully admit that.

MY SON.  MY FIRSTBORN.  He’s concerned that he’s a them.  I walked into work yesterday morning and wept.  Thank stars for Jill, who hugged me and cried along with me.  I’m not done grieving yet, so don’t tell me that maybe it won’t be that bad.  I have to believe it won’t be, but I am not there, not forty-six hours post.  I’m a fool for my optimism sometimes, but I do believe the sun will shine tomorrow.  Politics has kicked me around the last six years or so, but I’m an adult–no one to blame but myself for my continued optimism.

Logically I comprehend it’s unlikely that all these terrible things are preordained simply because president-elect has blasted them on the campaign trail.  I had a civics class, and recall something of a system of checks and balances, however slanted that is these days.  People are reacting, clearly I AM writing emotionally and from a stance of fear; isn’t fear what the campaign was about?  While all those frightening campaign trail assertions are unlikely to reach fruition, the fear is real.  Grab it.  Touch it.  Go ahead.

I am sure that 47.5% of you reading this are my Bizarro World mirror image.  I can’t wait to read your comments telling me just how wrong I am.  Please, educate me.  Go ahead, tell me how ridiculous and ill-informed and naïve I am–comments are open and operators are standing by.  “You lost.  Get over it.”  I will.

Today I’m not quite set to get up off my knees, but it is the time like no other for me to hold on to what I believe.  Sing it to me, Jon.