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

But I Don’t Actually Play Tennis

We joined a tennis club.  I can barely stand on two feet these days–I literally fell off my shoes after my concert last Tuesday.  So I can hardly walk like a proper grown-up, let alone play tennis, yet tonight I found myself at New Member night at “our” club.  My life is just chock full o’ twists like that.  I reeked of imposter as my big kid and I entered for the first time as members.  Really?  I’m the kind of person who would be lurking out back by the dumpsters, attempting to catch even the most distant glimpse of how the other side lives.  I’m not on the other side.

My friend Jane is super smart and kind.  She has perhaps an even more wry/dry/sly sense of humor than I do, and outside of my inner circle of fans of my band, she is one of few who understand the celebrity boyfriend phenomenon.  That alone is reason to want to hang out with her all the time, but really that’s just icing on the cake.  And you know I DO love my frosting.  Anyway, Jane.  She DOES play tennis, and so do her husband and her two sons.  At the club.  Last summer she invited the boys and me to an afternoon swim, and began her pitch for us to join the club too.

For all the right wrong reasons, I wanted in.  OK, really the reasons are two:  1) Jane.  Hanging out with her and her family more often, and 2) The Big Reason. My big kid could swim all summer long without having to take a swim test, which he would never pass.  Our community system of public pools requires that each kid each day pass a swim test, granting them access to the deep end.  My kid can’t swim like they require him to (MD, ya know), so any trip to the pool ended in frustration (his) and tears (mine).  No kid who stands 6′ tall wants to dally in the shallows when all the cool kids are in the deep end.

My husband–the one who actually plays tennis–rebuffed my efforts to prod him (us) into joining.  It’s expensive.  We’re broke.  True and true.  My husband–the one who has never paid a bill in the course of our marriage–was worried about the cost.  Legit, but I was all like, “Now you’re paying attention?”  When I calculated the approximate cost of a single baseball bat we purchase for the small one, a season of family fun allowing the big one a chance to find a happy place paled.  It felt like a sound investment to me, but Tom still wasn’t on board.  Jane and her husband have mad persuasion skills, and somehow convinced my hubby to join.  I wasn’t there, but skills, y’all.  Next thing I know, I’m completing application packets, writing big checks, and boom! I’m told my husband is signing me up for social tennis (??).  I was led to believe it was mostly about day drinking, so I was all “IN!”  And soon I’ll be playing social tennis.  Which apparently is a thing.

So the six-footer and I go to the new member night tonight.  We received our membership cards, and were met near the entrance for a tour.  We had a very nice chat with one of the board members and his wife.  We explained that half our family was at a baseball game, so couldn’t make the opening reception.  They asked my big kid if he was into baseball or tennis (a perfectly logical question, no?).  He replied that, no, he wasn’t, that he was really there for the swimming.  They continued to talk with him, talking up tennis lessons, and maybe he could take lessons there?  Again, he denied athletic inclination, saying, “I’m really not a sports guy.”

He’s looking over at the pool, and asks, “Do you need to take a swim test every day here?”  I’m sure to them it seemed an odd inquiry, but I knew precisely where he was going with it.  “Because I have MD, that’s muscular dystrophy, and it’s hard for me to pass a swim test.”

You could have knocked me over with the straw that broke the camel’s back.  Wait, what?  It was the first I’d ever heard him introduce and talk about it in the real world.

They told my kid that at one time, kids had to swim a length of the pool in order to gain access to the diving well, but they weren’t sure that rule was still in place.  The relief on his face was enormous.  After but a few minutes of acquaintance, this woman said to him, and really to me, something like, “I’m sure your mom will be here to make sure you’re never in a place she feels you’d be unsafe.  My son’s a lifeguard here, and all the lifeguards here are great and will keep an eye on you too.”

Hugging a total stranger felt inappropriate, so instead I thanked her, and thanked my lucky stars it was sunny.  Ray-Bans to the rescue, because there’s no crying in tennis.  You know what?  Yeah, there is.

The pool opens tomorrow, and a certain thirteen-year-old wants to swim.  According to my WTF app (What The Forecast), it’s looking like mid-50s/low 60s weather for opening day.  And did you catch the Pig Latin??  This is my kind of smarty-pants app!  Swimming tomorrow feels like a no, kid, but I’ll get you there.  Soon and often. That’s a promise.

 

Weird

A slap in the face can come in the form of words, not actions.  I don’t recall ever being physically slapped in the face though, so any such slap has been a figurative one.  The Mother’s Day slap stung harshly.

The sky shone blue on Mother’s Day, a sapphire so perfect and rich it looked like it had to be a painted stage backdrop.  My husband and the boys decided we would take an early morning trek to our funky, local coffee shop for breakfast because 1) coffee, 2) I love going out for breakfast, and 3) Mother’s Day goodies for everyone!  The shop is one mile exactly from our home, usually a doable walk for us all.  About two-thirds of the way there however, my big kid complained of pain, and needed to take a breather.  I fall down a mountain and report back in excruciating detail about my bruises and abrasions until the last of them has faded.  I trip down the stairs with regularity, and anyone in the 53207 postal code hears me fuss.  My big kid though?  He doesn’t complain.  It’s just not in his DNA.  So for him to complain, I knew he was struggling.

We made it to the coffee shop life and limbs intact after all, but my big kid was definitely not himself.  You run through the maternal 5-point illness/injury probe: with one pointer finger, point to where it hurts; is it stabby pain or throbby pain?; did it just start hurting like right now, or have you been pushing through for awhile?;  do you have to poop?; can you move or do I need to run home and return with the car?  OK, it’s not technically a protocol, but man, I was hoping it was just an “I have to poop” thing.  If you have sons, you know exactly what I mean here.  “I have to poop” is I’m sure at the root of many mommy panic attacks and midnight calls to the nurse practitioner triage line.

Days later I remain fuzzy about the symptomatology and unsure of its etiology.  I do believe it was MD-related, which he denied.  He fatigues easily, which leads to a weird MD cycle: When your muscles fail, you get tired easily so you don’t develop the endurance to walk long distances.  Because you cannot walk long distances, you don’t develop good cardiovascular health, which affects endurance.  Because your cardio and lung capacity is reduced, you don’t engage in extended physical activity, and so on, and so on, and so on.  We stopped three times on the way home, which was A-OK by me, and it was at the third stop where all (well, some) was revealed.

Sir Trips-A-Lot accidentally took out a classmate’s chair Friday afternoon.  Proprioception not being one of his special gifts, he accidentally kicked the leg of the chair next to his, and his buddy went down.  The substitute teacher on duty was certain it was done with intent and malice aforethought, so told my kid he would be telling his regular teacher.  Big kid made it right with his friend Friday before the end of the day–it WAS an accident of course–but he feared the consequences he thought were to come.

“How do you want to handle this?” I inquired.  “Do you want to see what Ms. S has to say to you Monday or would you like me to email her before tomorrow to explain your version of the story?”

I was impressed that he wanted to handle it on his own for starters.  I told him that he if thought he was being treated unfairly, then I would contact his teacher if he believed it necessary.  I also told him that his regular teachers understand he has MD, and that sometimes his body does weird things.  I say this not as a free pass for him, but as a statement of fact.  If he took the kid out intentionally, we’d be having a very different conversation.

“Some of my classmates say I’m weird,” he ventured.

“You ARE weird,” I replied without missing a beat.  The look on his face???

“We’re all weird, it’s cool.  Some of your friends are weird or do weird things, right?”

Both my husband and I talked with him in the moment in generalities about weirdness and uniqueness, but I was the only one of us three whose eyes were teary.  See, the outliers know they’re different before anyone has to tell them so.  I know I’ve used those very words before, but they remain true.  It’s one thing as a mother to know these things, but quite another for your child to share them voluntarily.  He never complains, as I said, so I knew it mattered.  This parenting gig is not for the weak, people.  It was Mother’s Day, but I no longer felt super celebrate-y.  I felt lovey and squishy and nostalgic for their lovey, squishier toddler hands and bellies, and a bit sad that adolescence is doing what adolescence does.  Adolescence with MD, I can only imagine, complicates things that much more.

Later Sunday afternoon, he came out to the patio where I sat, bundled in my winter coat and blanket, reading a novel.  Yay for Mother’s Day leisure reading for fun under a warm(ish) spring sun!  He came out to tell me that he thought I was weird too.

“Oh, what makes me weird?”

“Well,  your BNL obsession for one thing.”

This was neither the time nor place to discuss the semantic distinction between obsession and concentrated hobby, so I let it go.  Instead I replied with something like, “Yeah, most moms don’t chase their favorite band across the Midwest.”

“AND Canada, you actually went to Canada.  That’s weird.”

“Yes it is, son. Tell me now one thing about me that you love.”

“You take care of us.  You do all the responsibilities around the house, and you say you love us like every day.”

“I do love you, big kid,”

“I know, mom.  Love you too.”

*end scene*

I’ll take being viewed as weird in exchange for an unprompted “I love you” any day.  I guess my Mother’s Day gift was the gift of gab from that one.  He’s typically short on effusive expression, sticking with the seventh grade one-to-two word answer grunt script.


He wrote me a note, which included an acrostic poem using Mother, very much prompted, this time by one of his teachers.  Trustworthy and Heroic he wrote.  I’ll take it.

 

 

 

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.

#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.

10 Things My Dog Doesn’t Need

But can’t live without apparently. There’s little more humiliating than circling your dining room table in pursuit of your dog and whatever the hell said dog just made off with clenched in his jaws. Caleb is working on improving his shame game–he at least flashes an expression of “Hey, I am who I am, lady, and really, YOU’RE the idiot for not living in a vacant warehouse.”  Then he hauls ass, top speed, in canine glee, because hey, he is who he is.

This post could well have been titled 3,454 Things My Dog Doesn’t Need.  I am proud and delighted to report that my dog is not the worst dog in the entire universe–he can learn, but our boy is a willful little Teutonic canine mashup.  Progress is incremental, but he can and will “sit” and “touch,” so hey, something.   The worst dog?  That special honor is bestowed upon another rescued dog in his Caleb’s obedience class. He is getting there, Caleb is, just not at a speed with which I am comfortable. He is trying.  And I mean “trying” as both a verb and adjective!  I’m trying too.  I am trying not to lose my mind and verbally spew what I’m thinking when he pulls me down a mud-soaked path in the park. I’m trying not to recoil when he re-eats his own vomit in the backyard. (Sorry if you are reading this over the dinner hour.)  But when you rescue a dog, you commit, that is what you do–you commit!  So we are committed.  And maybe I should be committed.

Since 3,454 things would make a super long list, and ten is a good number for lists, here we go. . .

10.  Dogs don’t wear baseball hats. You’ll never need one, Caleb. Ever.

9.  Likewise, dogs don’t wear shoes.

8.  Or socks.

7. Placemats. Now here I at least kinda get the allure. They’re very likely to contain crumbs, or maybe you’ll score the mother lode and land one with butter or honey or chicken grease rubbed in. And if you’re wondering why our placemats contain foodstuffs residue, you obviously don’t live with boys.  It can’t be just my boys who find napkins so luxurious or inconvenient they don’t want to use ’em, right?

6.  Recently added to his thievery repertoire are dish sponges. He loves shredding the yellow part, but seems weirded out by the scrubby green surface. You know, it’s almost like he’s brushing his teeth, so maybe this one can stand. Maybe not.

5.  Books. I feel the certainty of the divine that you’re not actually going to read Night by Elie Wiesel.  You can look all academic and even respond to “Sit,” but Caleb, you are no scholar.

4.  Athletic supporters. ‘Nuff said.

5.  Bath towels. If I thought there was any chance you’d accomplish incidental cleanliness, I might get behind this one too. But yeah, no.

4.  Ink pens. Now you’re just an a-hole, dog.  And even Oxi-Clean teamed up with aerosol hair spray cannot remove the stains completely. And I know my way around a can of hair spray, people.

3.  Kleenex tissues, preferably used. These are just snacks now. My dog is an idiot.

2.  Rubber bands. You do not even want to know how I know this.

1.  Slippers. Like shoes, they’re not a canine necessity, because you’re a dog!  Unless it’s mid-summer or mid-hot flash at which time I radiate the heat of a thousand suns, I am a human popsicle. I need my slippers, Caleb, I do.  Importantly:  I need two slippers.  Two is the magic number for me, but I’m short one slipper thanks to ol’ Sparky.  I miss my old, blue slippers.  They had at least one good season left in them, a couple months at least, but no.  *sigh*  What are the odds that my friend Jill just happened to have an extra pair of slippers–still in their original packaging–in her trunk?  Turns out the odds were 100%!  Thanks to Jill’s footwear generosity, I’m not still fuming mad, and Caleb lives to wreck more stuff another day.

I am not even going to mention the fact that within twenty-four hours of my son getting his wrist splint fit and created, the dog bolted with it, and chewed and slobbered all over the thumb support strap.  I hadn’t even gotten used to the idea of my  #1 son needing the splint when my #2 calls me at parent-teacher conferences to tell me that the dog split with his brother’s splint.  See, because that would make two blog posts in a row that I barely mention the splint, and thus far, that’s workin’ for me.  Not denial, no, just not high focus.  Plus, eleven isn’t a good number for lists.  Obviously.

And also I don’t want to hear it from anybody who thinks I’m overreacting to MD because my son “doesn’t look that different, I don’t know what she’s worried about.”  I get to decide how my child’s diagnosis hits me, not you.  Until you have the conversation with your child about his or her likelihood of losing his/her ability to walk and requiring durable medical equipment, you can butt the hell out.

PS–Did no one notice my mad enumeration skills?  #NotEvenClose

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

Physical Education

Fucking gym class.  Seriously.  Stupid, fucking gym class.

I could sprint faster than any other girl–and most boys–in my elementary school, but anything requiring me to connect any type of ball with any type of implement?  Not so much.  Embarrassingly not so much.  Only as an adult did I learn that my visual-motor integration was so weak it was laughable, but that came decades too late to save me from the horror that is middle school PE.  Fucking gym class.  Unless you’re the grand-slam hitting slugger or a budding Aaron Rodgers, you probably didn’t love gym class all the time.  Even if it wasn’t wholesale awful, few adults reflect on that time with fondness.  Ask your friends, I’ll wait.

Bombardment, anyone?  Right?   As if it were yesterday, I can picture my pudgy adolescent self stuffed into my late-seventies-too-short kelly green gym suit dashing up to that line, hoping against hope I’d snatch the ball from the line.dodgeball
Nope.  Never happened. I was hammered every time.  Bombardment is Dodgeball, and Dodgeball is a tormentor’s dream come true. No one has friends on the Dodgeball court; not even your friends are your friends.

I’m relieved that my children’s physical education classes are less bully pulpit and more about team-building and lifetime activity, but still, gym class isn’t exactly a child with a neuromuscular disease’s fave, you can imagine.  A few weeks back, the “lifetime activity” was climbing a cargo net.  Quietly that evening during our commute to his volunteering gig, my big kid proclaimed his victory over the cargo net.  His hands were blistered and even a little bit bloody, but he reached the summit.  He’s not one for overstatement–OK, he’s not much for statement–but I could tell it mattered to him.

Last week’s class had the kids breaking into self-selected groups for some type of activity.  I didn’t get a real good sense about what the activity was, because gym class that day for him was about being excluded.  Kids are nice enough to my boy, but they’re not blind: he’s not the kid you would choose for your PE team.  And he wasn’t.  Chosen, that is.  The cool kids immediately found each other, and the outliers shuffled around (this is how it looked in my head anyway) looking for the “best” of the leftovers.  Yeah, “best” in BS fakey quotes.  My kid was never in the running for his friends’ group, and then two other groups bounced him before he kinda gave up.  I kinda stopped listening here because I was all about the tears near to overflowing.  I faked my own urgent business to attend to in the kitchen, regrouped, then presented myself back at the dining room table.  *sigh*

I met with his school’s Section 504 coordinator two weeks ago, saying I was worried about PE, among other things, as we look toward high school.  I wondered about accommodations which might become necessary for him, but believed that those weren’t necessary quite yet.  I wanted my kid to have the choice to participate or not–not to be fully excused from physical education necessarily, but to allow him the opportunity to choose to opt in or out.  That evening’s dinner revelation felt like a prime moment to share that conversation with my son, and without a moment’s hesitation, he wanted out.  Now.  Now!

See, the outliers know already.  You don’t have to torture them picking teams playground rules-style.  They know.

 

Still Wendy

Three things not to schedule on one day:

  1. Your son’s occupational therapy appointment
  2. Same son’s four-tooth extractions
  3. A pre-504 meeting with said child’s school’s school psychologist

Helpful parenting tip right there, y’all.  You are welcome.  No, you.  Really.

I received a shower of corrugated cardboard-clad prizes in the weeks before Christmas from my best friend, Deb. She’s one of the smartest people I know, and a librarian by trade.  Amazon’s smiley packages revealed to me copies of her favorite books from the 8.4 billion she read in 2016.  I wasn’t sure with which to begin, so I let my husband judge a book by its cover, and he chose A Man Called Ove.  Written by Swedish author Fredrik Backman, it affectionately details the days of a man called Ove, a quiet, principled fellow who, in spite of himself, learns to love and be loved.  Deb got to meet Backman at an event at her library, and that made me love Ove even a teensy bit more.  I miss her so.

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I completed #2 of Deb’s 2016 Best-of, Still Alice, by Lisa Genova just a few hours ago. You might have seen the book-turned-motion picture starring Julianne Moore a few years back.  There were ugly tears shed watching this movie, but the book hit me differently.  With sadness, sure, but also with fear.  We meet Alice Howland, a superb Harvard psychology and linguistics professor, at age 49.   She is at the peak of her game–a brilliant, sought-after international lecturer; physically beautiful and five-miles-a-day fit; adoring, co-author/researcher husband; two perfect, equally brilliant, accomplished children; one brilliant black sheep daughter; the beautifully appointed Cambridge home.  You want to hate her, but you don’t.  Shortly after she extinguishes 50 candles on the cake, she learns she has early-onset Alzheimer’s Disease.

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Genova’s Alice speaks to us through the veil of fading memory.  The way Alice reveals her loosening on the world around her is heartbreaking and scary.  Alice knows she’s losing it; she recognizes that she can’t quite recall words and labels, her familiarity with her loved ones, career-long colleagues and places becomes that of a passing acquaintance or a just-met.

I love words.  Reading wonderful authors reminds me that I don’t use a great many words in my own communications.  Sure, I could calculate a type-token ratio (a measurement of vocabulary diversity), but I don’t think that’s necessary here.  I do better than many, not nearly as well as I’d like.  My point?  My word retrieval has begun to fade, like Alice’s did.  I have this killer elbow tendinitis, and this morning wanted to voice an iPhone reminder, “Hey, Siri, remind me to call Dr. . .  Dr. . .  Dr. . .”  For a million, billion dollars, I could not recall my GP’s name.  Were you to hold a gun to my head or dangle front row BNL tickets in reward, I’d have gotten no closer to remembering his name.  I had a moment of pause.  This is not the first time I’ve come up empty in my quest for words.  And I don’t mean snazzy, arcane selections like gerrymandering or verisimilitude.  I mean stunners like cabinet or tortilla or crate.  You understand my fear now, right?  At least Siri wasn’t in a judgey, sass-me-back mode like she can be.  Maybe artificial intelligence is smarter than I assign it credit, and Siri recognized my gaffe for the frustrating moment it was.

My husband says I’m worried about too many things.  “You’re the glue that holds our family together, you’re always organizing or planning.”  You’re tired.  You’re stressed out.   Yes, yes, true, and yes.  But the same was said of Alice Howland, and she led a MUCH more dazzling life than I do.  Yes, she’s a fictional character, but we’re the same age and we were both pretty good with language.  Her earliest signs of early-onset Alzheimer’s were cast aside for these very reasons, I pointed out to my husband.  He was spectacularly blind to and disavowing of my self-drawn comparison.  I know I’m slipping the tiniest of steps, and so did she.

I don’t actually think I’m showing signs of early Alzheimer’s Disease.  I AM showing signs of being 49 though, even if I am sporting the best hair colors of my lifetime these days, I’m no spring chicken.  But all the while I read Still Alice, I thought Still Wendy.  How will I know I’m still Wendy when I don’t?   It’s exactly like me to make mountains from molehills to be sure, but what if I am tap dancing at the cusp of the mental abyss?  Alice asked herself the same five questions every day, and directed herself to open a special computer file when she could no longer recall the truths.  In this computer file (no spoilers here) she did write a breathtaking love letter to herself, detailing her own talents, accomplishments, loves and wishes.  Probably everyone should do that for him or herself.

With today’s series of appointments–thank goodness for my text/messenger friends who were “there” for me, talking me down and through as they always do when I get too deep into my own head–I was reminded how much my boy needs me.  I’m the one who took off from work to shuttle him to and fro. I KNOW he’s a teenager, so obviously one of his parents is responsible for meeting these needs–I’m not that off my game!  But MD is forever for him; I’m temporary.  I mean, I don’t plan on going anywhere soon, but I don’t get to pick.  What will happen if and when I can’t?  He is going to need an extremely patient someone to share his life with, or will he have to hire people to care for him if I cannot?

I should compile my list of Still Wendy questions, because these questions?  These are not questions I’m prepared to answer.  I should also draft that love letter to myself, and so should you!  What would you say to you about yourself if you penned a love letter to you?