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.