An MDA Kind of Week

I received an email from a member of our Milwaukee area Muscular Dystrophy Association chapter last week, checking in on our family after our tumultuous 2019.  To say that a black cloud has followed us the last year is not high drama.  Even my most optimistic, glass is always half-full friend recently allowed that maybe my family was due to catch a break, and that is saying something because Nicole is exactly the ray of sunshine everyone needs in their life.  Anyway, the MDA was kind enough to wish us well while also checking in to remind me that the annual Muscle Walk team registration had opened.

Our family has participated in the annual fund raising event annually since my son’s 2015 diagnosis.  You’ve helped me raise over $10,000 to support kids and families affected by muscle disease, including the incredibly near and dear to my heart summer camps.  I’m still a bit stunned that I asked, because I HATED asking, and even more stunned and humbled that you answered.  Our walk team was consistently among the top five fund-raising teams in the Milwaukee area, a statistic I’m proud to notch.

COVID-19’s global takeover has changed everything we know about how we navigate our 2020 world, but even if not for pandemic, we wouldn’t be participating in this year’s walk.  I responded to her inquiry by circling back to the accident.  Honestly, every damn thing in my life since May 7 just relates back to May 7 anyway.  I told her that when my husband was injured and in the months after, we were incredibly fortunate to have had people from all corners of our world take care of us.  People fed us, cooked meals, and/or bought gift cards or groceries for us.  People sent us money to help bridge the gap so we could pay our bills.  I just didn’t feel the time was right for me to ask those very same people to support our fundraising for the MDA this year.  Our friends, family, and neighbors had done so much for us, and I felt that to ask any more this close to the accident was beyond my comfort zone.  It took a good three or four rereads of my email draft before I could summon the strength of my one little index finger to hit “send.”

And then I wanted to throw up because I felt I was letting them down.

Later that very day, I received another email from the national MDA organization containing the news that this year’s MDA camps had been canceled. Given the state of the world, news of its cancellation was not exactly “news.”  Many kids suffering muscle disease endure accompanying systemic health problems, compromised respiratory and immune systems surely among them.  Nobody’s going anywhere these days, least of all kids with multiple health needs and the crew of volunteer medical and counselor staff needed to support a camp such as what the MDA produces.

My son had elected not to attend camp this summer.  He is close to aging out of camp, and he barely acknowledges he’s got the disease (a topic for another day), but more directly had hopes of a summer job on top of his volunteer gig.  Actually it’s probably more closely aligned with his “Who, me?” stance on this progressive, ugly disease.  I’m not sad that he chose not to attend camp, but I understand well the disappointment and sadness many kids and families are expressing with camp having been shut down.  Camp touts itself as the kids’ “best week of the year,” and I know that to be true with my whole heart.


I’ve enrolled in a course–gotta do something productive these days!, and one of the required activities was to complete an assessment about your perception of your character.  More on this to come, but my number one character strength based on my responses was kindness–doing favors and good deeds for others; helping them; taking care of them.  I can’t say it’s wholly accurate, but I do know for sure what kindness looks like.  It’s not what I see when I look in the mirror, but in the reflection of the people I see around me.

Be safe.  Be patient.  Be kind.

And in a totally random non-sequitur, check out the colors in these downtown murals.  Since part of our “home schooling” has been a classroom behind the wheel of a car, I’ve been able to view the city from the passenger’s seat.  It’s terrifying and reassuring at once that my kid insists on driving through downtown and other densely peopled areas of the city as he logs practice hours.  He seeks the experience, and I see the city from a new, beautiful perspective.

What I Did On My Summer Vacation

  1. Wake earlier than is required even during the school year. Yep, 5:11 AM. At least I remembered to disengage my alarm clock this year. Go, Wendy!
  2. Linger in bed for just a little.
  3. Meditate. Well, do a little guided meditation via the Calm app. Educators were given access to the app because, well, because being an educator is freaking hard, and mindfulness is a hot buzzword at present. I was ready to write it off as horse-hockey, but today? I was calm (which may or may not have had something to do with the fact I didn’t have to be out the door at seven bells).
  4. Savor a cup of coffee. Slowly. While seated. In my recliner. Reading a book.
  5. Celebrate that the #mprraccoon scaled its way to the roof of the UBS Building in St. Paul. Had he not summitted safely, my friend Nikki would have been inconsolable.
  6. Re-re-re-re-re-re-re-re-re-re-re-re-re-commit to a healthier lifestyle and losing the 8 pounds that, like a cheap suit, keep hanging on, fitting poorly, gauche and out-of-style.
  7. Walk Sparky a good 2+ miles. See #6
  8. Celebrate the end of Sparky’s explosive diarrhea week. I even called my husband! Yes, this is my life. Cheering less messy dog mess. Jaysus.
  9. Smile at the man who beeped his horn and waved at me to remind him that people can be decent. He had that “oh shit” face of embarrassment when he realized I wasn’t who he believed I was when the scene opened. Notice the birds chirping, the hundred shades of greens, purples, and pinks that popped now that summer has finally agreed to stay a while.
  10. Think a lot and hope and wonder about my kid away at MDA Camp this week.

Four hours in, and so far I’m killing this summer vacay thing, dontcha think?

Verbal Diarrhea

Saying “verbal diarrhea” sounds comical.  In writing, the phrase looks vulgar, but who am I kidding?  I’ve considered an alternate title, yet this phrase succinctly and correctly captures my crass, adolescent-dude-masquerading-as-middle-aged-mom to a tee.

I own the affliction.  The shoe fits and all.

The Muscular Dystrophy Association’s summer camp director emailed me a few weeks back, asking if I’d be willing to share our family’s MDA story, to share what camp has meant to my son and/or to us.

I loathe asking for money (but PLEEEEEEEEEASE donate to our 2018 Muscle Walk campaign by clicking here).  The list of things I’d rather do than solicit donations for our Muscle Walk team covers more linear feet than the distance from the earth to the moon, but I can write and I can talk.  So, after joining the MDA “family” three years ago, I finally went to a family hoe-down.  And by hoe-down, I mean business meeting.  MDA staffers from around Wisconsin met to kick off this year’s camp planning, and asked me to toss in my two cents.  Everyone introduced him- or herself, so I knew who to thank, and that is how I began: with thanks to them for their work on behalf of individuals afflicted with crap muscle disease.

I think I was meant to be inspiring.  Stop laughing.  I can hear you over here, you know.

I was decidedly not inspiring, but I did share our narrative.  Not knowing my audience ahead of time, not knowing how many people would show up, I did not prepare any remarks.  You speak differently to a group of ten people around a table than you do in front of an audience of a couple hundred, so I flew without a net.

We have a story, and my recitation of our story feels and probably sounds like a script.  I don’t know if that’s what they wanted of me, but that’s what I related: our story.  I talked about how we came to learn about MD–how an offhand “It’ll probably be months before they get you in, so don’t worry, it’s just a rule-out” became “He has an appointment with Children’s Hospital Neurology on Wednesday.”  I said, “You’re all lovely people, but I wish I didn’t have to know you.” (and no, I didn’t use the f-word because I used to say ‘I wish I didn’t have to effing know you,’ but they invited me, and you don’t use the f-word in a business meeting.  Usually.

I explained that immediately following the diagnosis, I took to the internet to chronicle my feelings.  It wasn’t shameless blog promotion, because really, my blog hits a pretty boutique market–I’m not for the masses, I get that–I didn’t bring it up to ask them to read it.  I brought it up I guess because this blog has been my companion since that horrible January day.  Nearly every MD revelation that’s floated through my cortex has found its way here.  Three years later, I’m still Greater Than Gravity-ing.

And now I can add talking too much to my MD mom experience.  The members of the group with whom I spoke were gracious and attentive, but I couldn’t shut up.  I just kept pushing through my narrative, kept talking, staring off into middle distance too often probably.  I wanted to tell them exactly why greater than gravity, but that wasn’t part of the script I didn’t know I had followed I guess.  But that’s it!  Love.  The love I have for my child, the mama bear love that makes me have to write so that I can deposit all the marbles rolling loose in my head and be present for him.  Love.  It’s greater than gravity.  Betcha Ed didn’t know how much that, or any lyric would possibly come to mean to anyone when he wrote the song.  It’s dumb if you’re not me.  I know, it’s OK.

Muscular dystrophy is my kid’s story, not mine.  My story is how I became an unwitting blogger after learning my child had a progressive, terrible disease, and how this unintentional blog has become my confidant.  Since the patina of shock has now been dulled by three years’ time, I don’t write about MD every post.  But I have this collection of 200+ stories about parenting two boys, public education, my friends, Barenaked Ladies, baseball, my squishy-faced, sock-stealing idiot rescue dog (whom I LOVE), and kitchen remodeling.  I wonder how bonkers I’d be if I hadn’t written this all down.

Through my collection of tales, I’m given opportunity to thank those people who matter tons to me, and I’ve been able to educate, inform and yes, raise some money for the MDA, so kids like mine can find where they belong.  Even if it’s only for a week, it’s A WEEK.  You just don’t know what that means, to find your home.  For my kid and too many others?  It’s greater than gravity.

They asked me to read the letter I wrote to the camp counselors last year and I did.   I didn’t even ramble on.  I didn’t even ugly cry.  It was hard, but I did it.  I can talk and I can write.  I may not be a top fundraiser this year, but I did a good thing.

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