3,564 Reasons You’re Incredible

You did it.  You helped our team hit our fundraising target for the 2018 MDA Muscle Walk.  Team Greater Than Gravity collected $3564 for the Muscular Dystrophy Association.  YOU DID THIS.

Muscle Walk Total

Your dollars are possibly sending several kids to summer camp.  Perhaps those dollars are helping fund a pharmaceutical lab assistant working toward a treatment, or maybe they’re helping a family fund a wheelchair or ventilator for their child.  I don’t get to direct precisely where the funds land, but I know that each and every dollar is well spent.

A dad, a mom, and I were invited to speak before the walk began Sunday, and you’d have to be some kind of stoic not to have a tear in your eye listening to those two parents speak about their children–how they knew something was wrong, and how long it took to determine just what that something was.  How it took years of effort and investigation to find the right medical professional to steer them toward, and then settle on that MD diagnosis–it was story not entirely unlike ours–MD is sneaky, and its variations so disparate.  There are some “common” or more “identifiable” subtypes, and there are also a slew of other subtypes not so clearly evident.  You know something isn’t quite right, but your “what is wrong?” compass doesn’t settle due north.

I didn’t share much of our story on the microphone because my son is fourteen, and it was horror enough to him that I was even up there.  Before I agreed to speak, I talked with my son, asking him if he would be OK with me up there and he agreed so long as I didn’t point him out or betray any privacy (or look at him while I was talking, or, or, or. . .), and out of respect for him, I did not say too much.  It got me to thinking that the lifespan of this blog was maybe nearing its sunset.  I probably wonder something like that every time I hit “publish” to be honest.  Writing these days is less about my boy with MD and more about my four-legged boy with a penis infection (the dog). My life!

I’m happy I can do the walk, raising awareness and money for an honorable cause, but I am glad it’s over.  I feel physically beat, and NOT because the walk was physically demanding.  I’m tired.  It’s an honor, an exhausting honor, to help support the MDA, but I think now I need a nap.  Does that sound lame?  Ungrateful?  Please know that it’s not ungrateful.  I can live with lame.  I’m a total weirdo on walk day, a fact to which anyone at the walk can attest.  Sorry guys.

This team is comprised of family members and friends I see routinely, friends from high school, work friends and colleagues who quietly surprise the hell out of me with their support here.  My crew contains anonymous donors, a former boss, a writer I’ve met blogging, parents of my son’s friends, my Barenaked Ladies ladies, and people I’ve never even met! I know you don’t donate to our team to read your name here in my goofball blog, but I would be remiss in not posting an honor roll.  It is truly my honor to know you, and that is true even if we haven’t met in real life.  Thank you.  There are a million organizations you could choose to lend your support, and somehow, when I ask, you choose mine.  There are no words to express what that means.

Ann Calverley, Sean Carlin, Bridget Panlener, Greg Amborn, Beth Sandmire, PJ Early, Alicia Kraucunas, Terry Radtke, Ginger Stapp, Amy Van Ells, Sue Wacker, Diane Piedt, Nicole Garza, Shelly Weisse, Lori Lepak, Patti Bohlman, Laurie Stilin, Jill Holmes, Stacy Skenandore, Chelsea Laub, Heidi Britz, Nikki Leininger, Michelle Sjoblom, John Weir, Bek Szypula, Rose Mary Walecki, Rhonda Weir, Bob Kosky, Amy Behrendt, Rene Damask, Gwen Evseichik, Jenna Stoll, Sally Warkaske, Janice Schwind, Jennifer Sanders, Steve Inman, Charlie Pozza, Valerie Hoehnke, Barb Berman, Kathy Gregorski, Maggie Palutsis, Julie Freyre, Chantal Van Uytfanck, Anonymous donors, Lisa Lien, Tracy Klement, Julie Smith, Heather Koll, Patti Sereno, Christine Carey, Shelly Boutet, Jodi Liebelt, Rebecca Halsey-Schmidt, Jane Mlenar, Ula Julien, Ann Kukowski, Mike Zyniecki, Anne & Bob Kosky, Todd Condroski, and Michele Nixon–you are the best of all the people ever.

I told the walk participants that the list of things I’d rather do than ask for money is long.  Really, really long.  And then I said that while I hated it, I’d continue to do it so that my child and others with muscle disease get the chance to go to camp, the chance not to be the only one.  I promised to continue showing up because showing up is the first step.  Thank you for showing up with me.

If you ever wonder if you are making a difference?  You are.

 

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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.

‘Tis Better To Give Than Receive

Merry Christmas, Everyone!

Our family is not religious, we are of the secular Christmas card-sending/Nutcracker Ballet-attending/gift-exchanging/reveling in the joy of the season lot. Santa will not be shimmying down our chimney tonight, and I miss that magic we shared with our children over the previous thirteen years.

I have been positively gleeful this December. That is not hyperbole. I am late in my preparations, but a smile–sometimes broad and hearty, others sheepish as if to say, “Holy schnikes, I have a crap-ton to do. I’ll get there, I always do!”–has been a fixture this fa la la la la la la la la.

I received a gift yesterday. This gift came in the form of a check and explanatory letter. When you see shades of doubt slivering through the fabric of your faith in human decency, remember my friend and the story I’m sharing here. My friend is an intensely private person, so a few edits were made in order to respect that.  I will never betray the trust she’s put in me over the years.

Dear Wendy,

When I was growing up, my family always watched the Jerry Lewis Telethon on Labor Day weekend (confession-not really because of muscular dystrophy, but because there were only three or four channels to watch).  We tuned in to check out various performers and entertainment and made sure we watched the end of the show to see how tired Jerry looked after staying up all night.  We thought it was really cool and crazy that he didn’t go to bed all night long.  We watched him sing at the end of the show on Labor Day evening as every year they showed record breaking dollars donated.  Jerry always got emotional and cried while singing his closing song and he looked all disheveled with bags under his eyes, shirt untucked, hair a mess–we loved to make fun of him in our immature kid-style way.

One year, we decided to help raise some money for MD.  We took our red wagon and went knocking on doors in the neighborhood asking people if they had empty pop bottles that they could give us to return to the store for the deposit refund to raise money for MD.  When our wagon was full, we pulled it home and transferred the bottles to the back of the station wagon and went out to more neighbors.  When the station wagon was full, mom or dad drove us to the grocery store where we cashed in the bottles then we would go back home and repeat.  At the end of the day, we donated our daily profits to MDA.  We did this for years and I think of it fondly every Labor Day weekend.

I now also think of you and your family on Labor Day.

I have not donated to MDA since I stopped collecting pop bottles.  Jerry Lewis inspired such a fun family activity and obviously brought great awareness to MD.  With Jerry Lewis’ passing this year, I thought it was a good time to make a donation.

Please help my check find its way to make the donation.

I admire how you handle all in your life and can only imagine how difficult some days must be.  Your son is very lucky to have you for his mom.

I’m not crying, YOU’RE crying!  Of course I’m crying.  I read parts of her letter at least three times before I was able to finish because my eyeliner was running by the second paragraph.  What’s the right word for how my friend’s kindness affected me?  Touched?  Moved??  Ugly cried??? 

My niece Lauren, who after my son’s diagnosis became an MDA Summer Camp counselor, has now committed to the MDA’s Team Momentum for 2018. She will be running a marathon to raise funds, awareness, and hope for individuals and families with muscle disease. Half my friend’s donation will go to support Lauren’s marathon endeavor.  Click here to read about an amazing example of today’s youth.  Team Greater Than Gravity strolls in its fourth annual Muscle Walk this spring, so the other half will be the donation that kickstarts our 2018 Muscle Walk team effort. Donations made to the MDA before December 31 will be doubled, up to $100,000.  That’s a lotta marshmallows toasted around the campfire, friends.

My Christmas wish for you all? That you have the good fortune to be surrounded by goodness, light, and love.  I’ve never known a time where I didn’t find myself among good friends.  Because of my son’s diagnosis, I’ve borne witness to good friends doing great things.  Still not grateful exactly for MD, no, but for the goodness and light it has illuminated in others?  That is my gift.

It’s Christmas Eve and it’s snowing.  And that is the lesser of today’s miracles.  Thank you.

xoxo

So, Uh, Thanks

The cranberries are sugared up and boiled down into a compote, green beans layered with cream of mushroom soup and whatever the hell French’s does with onions, and the turkey’s stuffed. The aroma of the single biggest shopping day of the year wafts through the kitchen. Truth be told, my only culinary contribution for this year’s feast is one pumpkin pie.  I don’t even like pumpkin pie.  My kitchen wizardry is woefully underutilized this year. I feel incomplete, inadequate.

The real reason we collectively eat ourselves into a food coma, drunk on tryptophan and/or a nice Beaujolais or Gamay? The Detroit Lions and Dallas Cowboys!! NO, silly, it’s Thanksgiving!  Happy Thanksgiving, America. And that would be a Happy Thursday to the rest of my friends around the globe.

If you’re my friend on any of the social media outlets or hey, if we actually get to speak to one another in the real world, you see I am pretty consistent in my expressions of gratitude.  I’m good at dishing it out, but I’m great at deflecting any expression of thanks directed back my way.  Why is it that gestures of thanks from others take such effort to accept?

I am grateful for what I am and what I have.  My thanksgiving is perpetual.  –Henry David Thoreau

Me too.  Nice job outta you, Thoreau, you beat me to it. I’d like to be reverent, but because I am a juvenile masquerading as a middle aged woman, this is what comes to mind any time I hear Thoreau’s name bandied about–

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Image from Wal-Mart. I don’t shop there, but I do appreciate having found this image on their webpage.

Henry David Catch! Baaaaahh!! Hi, I’m 12.  But I’m a grateful 12, and like Thoreau, I find happiness and gratitude in things great and small each day.  I’m happy that I make it to work every day after driving along Capitol Drive, the nearest I ever want to get to driving on the Indianapolis Motor Speedway, here in the central city.  It’s disheartening to see how motorists have so little regard for life–mine AND their own–that they drive like something out of an action film, or maybe what’s depicted in Grand Theft Auto (I’ve never played the game, so I’m postulating here).  I’m glad I arrive at work not dead every day is the point.  I’m happy for tulips in the spring.  I’m happy my children are achieving academically.  I’m happy for Kopps Frozen Custard sundae of the month.  I’m happy my dog thinks antibiotics and pain meds are treats–he will chomp down and ingest whole tablets and even sit in order to receive them.  Good boy, Caleb!

But of course there’s more than the little things to be happy about.  I’d be remiss in not sharing some of my favorite turkey day thankful main dishes, so here goes: a few things I’m thankful for this Thursday.  My Thanksgiving not-list is neither perfect nor pretty, and come on, you know me. . .  it’s certainly not symmetrical.  But it’s sincere.  Happy Thanksgiving, everyone, or Happy Thursday if you’re not from ’round these parts.

  1. My best friend is flying from LA to Milwaukee IN DECEMBER to see me. She loves me enough (or is off-kilter enough?) to leave sunny SoCal in December, and all I have to do is loan her one of my winter coats.  You guys, my best friend is gonna be here next week!!
  2. My Barenaked Ladies besties love me enough to spring a ninja concert trip on me.  Nikki and Bek arranged a ticket and transportation to the December 9 Toronto gig I was absolutely not attending. The girls announced their scheme after the purchase was made so I couldn’t say no.  To be perfectly honest, I said nothing for a day or two. I am so undeserving of this kind of over-the-top generosity, so I sat mute.  I’m not very good at people being nice to me, so I was reluctant to come around to my “yes.”  I should try to get better at people being nice to me.
  3. Hey, speaking of Barenaked Ladies (who, me?) my coworkers, hale and hearty souls, are making it a team effort for the June BNL show in Milwaukee. “We don’t need to sit in the front with you, but let’s make a night of it!” They’re choosing to spend time with me when they don’t even have to. Of course, once the band hits the first note, I won’t turn around again until it’s time to leave, but we will be together in spirit. Well, they will be together, and I’ll be by myself, zoned out a bit closer to the stage. Christine will be the one silently dying in embarrassment for me while I sing & dance my butt off, but that’s cool.
  4. I’m thankful my husband who, not a huge BNL fan himself, gives me space for my unbridled, giddy glee when a new album is released, and shares some measure of excitement when I call him on the phone, all choked up shouting, “YOU HAVE TO LISTEN TO THIS SONG!! ED USES WESTLEY AND BUTTERCUP IN THE LYRICS!!!!”  If you don’t know the reference, Westley and Buttercup are the star-crossed, nothing-can-separate-true-love lovers from The Princess Bride, which happens to be the first movie Tom and I watched together at a time in my life I needed more than anything to believe in true love.
  5. I’m thankful my husband leaves me little notes like this one he wrote Saturday morning before departing for work.  I know, “you guys are so cute we wanna barf.” We get that a lot, but aren’t Westley and Buttercup what we’re all shooting for? You + Me Vs The World, baby.
  6. Got Weirs on my right and Wolfgrams to the left. Looking forward to a long weekend, spending time with almost every branch of fruit or nut of my extended family tree at some point.
  7. I’m thankful to the point of speechlessness that I have an all-star supporting cast of luminaries whose generosity helped me raise over $5000 for the Muscular Dystrophy Association in 2017.
  8. I’m grateful for my friends, a cast of characters you wish you were your friends too. This year I offer special thanks to P.J. She killed it with her own shoulder rehab a couple years back, and within hours of reading about my injury, delivered a box of implements and tools designed to simplify life in the kitchen. And also wine, because wine! I opened that gift tonight, enjoying it in the spirit of thanks for her support and concern.
  9. I’m relieved that my friend Matt who was nearly killed in his home last spring, is safe and sound, and that two of his attackers have been sentenced.  You can hear Matt’s story about the sentencing here.  In related news, I’m glad his physical scars are continuing to heal as well.
  10. I’m fortunate to have a boss who says and means family first. This credo is especially important when your child has a disease that requires ongoing management and intermittent therapy appointments.
  11. I’m happy that a song can catch me on the precipice of the abyss and pull me back.
  12. I’m grateful I can read, write, and reason.
  13. And that you’re here reading.  Really.  THIS is my greatest wonder of the last several years: I write. You read.  There are so many ways to pass one’s precious time, and you’re here reading my words.  It means the world.
  14. I’m happy that I have enough.  I’ve never known hunger, and I’ve never had to worry about finding a safe place to sleep.  I’ve worked in the inner city for twenty-seven years, and finally I’m forced to acknowledge that I am struggling with the sequelae of urban poverty. The lack of basic needs being met, the language, hollering, the physical harm, the violence perpetrated–inflicted!–upon the city’s smallest people–it’s too much.  I’m increasingly less well able to handle a preschooler tell me, ‘F-off, white bitch! I ain’t gotta listen to you.”
  15. I’m happy that my children have enough. We do not live like royalty, but I can say that when mine were preschoolers, the worst I feared escaping their lips were “toot” and “fart.” Watch this. You won’t regret having spent the twenty-four seconds here, even with the poor quality videography. And yeah, to this day, the minute he gets home, he tosses off just the one sock.

https://youtu.be/YLgbJJS8ltY
For what are you thankful, dear readers? What wraps your heart up with contentedness the way this video of my no-longer-babies does for me?  Happy Thanksgiving, y’all.  Can I make you a leftovers plate to take home?

RIP, Jerry Lewis

As a child, I was completely annoyed when my Labor Day television viewing was co-opted by the Jerry Lewis MDA telethon.  Back in the olden days, kids, you had but four network options:  NBC, CBS, ABC, PBS, and maybe on a good day with aluminum foil coiled around your antenna just right, a fuzzy UHF independent signal floats in and out.  I was too old for Sesame Street by then, Hatha Yoga was just too bizarre, and I hadn’t developed the appreciation for Mr. Rogers’ Neighborhood that comes with adulthood, so I was a total punk kid, crabbing that the stupid telethon was the only thing on.  *petulant huff*

“Jerry’s Kids” to me seemed weird and a little bit scary–in my world, there wasn’t a single person who looked like one of his kids, and I didn’t get why he adopted this passel of wheelchair-bound, misshapen children.  That alone speaks volumes about one, living in a small town, but even more two, the influence of media.

I didn’t particularly appreciate his brand of humor.  His early films, what cemented his fame, the humor in that escaped tween me–he just wasn’t of my generation.  Yet I tuned in year after year, squawking the whole time, but dying to pick up that phone and make a pledge. Who didn’t want to be part of that tote board??  My mother would have killed me for making a long-distance call (again kids, in the olden days, each telephone call out of our small town was billed by the minute), let alone promising someone money I didn’t have.  I never made the call, and eventually I came to realize that you could spend Labor Day planted somewhere other than in front of the television.  I probably hadn’t thought much about MD outside of the Labor Day weekend until January, 2015.  Since January 21, 2015, MD is never not a top-5-of-the-day thought.  Jerry’s telethon marched on, but with declining viewership.  Now kids had hundreds of television channels.  Now kids had the internet.  No kid these days has to feel forced to watch one of only four channels.

Because of the incredible commitment Jerry Lewis made to the Muscular Dystrophy Association, his benevolence and the awareness he created, my kid gets to attend MDA summer camp.  My kid, and others like him, receive therapies and equipment, clinical trials and treatments because Jerry Lewis made the world aware that MD is a thing.

Thank you, Jerry Lewis.

The telethon is no longer airing annually–sign of the times–today the internet buzzes with fund-raising requests.  Now it is YOU who answer the call to click.  I didn’t make “the call” when I was a child, but I have helped raise nearly $10,000 for the MDA in the three years since my son was diagnosed.  YOU answered when I asked.  YOU stood beside me as I crumbled that first year especially, and YOU still prop me up when I can barely put one foot in front of the other at the Muscle Walk.  YOU read my ramblings here–you don’t do rainbows and unicorns, blindly assuring me everything’s gonna be OK, but you tell me you’ll stay with me through this wild ride.

Thank you, friends and family.

Jerry Lewis said this:

I shall pass through this world but once. Any good, therefore, that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer nor neglect it, for I shall not pass this way again.

THIS is what you do when you are gifted with the social influence that often accompanies fame:  good. You do good.  Let’s go do some good today, shall we?

We now return you to your regularly scheduled solar eclipse.

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.

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

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.

Singin’ In The Rain

It was a dark and stormy night.

It wasn’t, but I bet you’re all picturing Snoopy perched atop his doghouse, banging away on the keys of his typewriter, aren’t you?  You’re not?  Well then you’re much, much younger than me.  You’re lucky in that way, but it’s sad you missed out on the Peanuts greatness.  Wow.  It didn’t take long at all for me to steer off course on this post now, did it?  I call a do-over.

It was a dark and rainy day.  That’s better.

It was a dark and rainy day, but muscular dystrophy doesn’t allow for rain delays, so neither did the walk.  Can you feel triumphant and terrified at the same time?  That.  Sunday was a hard day.

I have been saying for months now that I will find a way to capture in words the gratitude I have felt in my heart. Turns out, there is simply no way to accomplish that. Instead, I will let pictures speak the thousand words they are said to do.

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I walked for my son.  Here’s why the other participants did.  Thanks to the MDA Southern Wisconsin Facebook page for this photo.

I got my own sign!

My beautiful niece Lauren, who will be in her third year as an MDA camp summer counselor made the trip from the U of Minnesota to be here.  She was admitted to grad school this week to pursue her MS in speech-language pathology.  I’d like to believe I had a little something to do with that career decision.  (I really would like to think that!)  Love this girl!

We were Team #2 with $5,399 in total funds raised.  You guys?  I can’t even.

The day before the event, I received a text from my friend Sue, who reminded me that exactly one year ago, I provided her words of support and comfort as she sat beside her dying father.  She wanted me to know that my message made a difference to her, and meant a lot, meant enough to tell me a year later that I helped her.  And she sent me her own message of love and support.  And yeah, I cried when I read her message.  She helped me right back.  I am a lot of work sometimes, but I must be doing something right to have latched onto and maintained friendships with truly wonderful people.

The MDA invites a few of its clients and parents to speak at the walk kick-off.  It’s painful, hopeful, emotional, and I’m not sure a dry eye can be found in the room.  My son had to step out, and I pretty much wanted to die right then for him, but my friend Jill, no fair weather friend she, showed up at precisely that moment.  I was stunned to see her, and her timing was perfection.  A much-needed distraction at the most-needed moment.

Shortly before the walk kick-off, my little guy’s best friend’s mom texted me, saying she and E would be arriving late to the walk.  I didn’t even know she intended to come.  We met outside the Aquatic and Reptile Center, and as we walked in, I thanked her for coming.  She told me that her son said he wouldn’t have wanted to come if it were for anyone other than my big kid, because “he’s kind of like my brother, you know.”  And that is when I really cried.  She hugged me while I cried, right there in front of the giant iguanas and jellyfish.  Because you can’t stand there and cry at the zoo, and because iguanas and jellyfish are really unsympathetic, I began to hum my personal battle cry, my song, to shore up my resolve.  Singin’ in the rain.  Well, singing in my head anyway, technically I was humming out loud.  Quietly.  But I made it.

You know who I don’t have a game day picture of?  My boy.  My boy, the reason I do this, all of this.  Didn’t get a photo of him that day.  He kinda had his own thing going on, and he’s thirteen, you know.  Not super happy to be photographed on his best day, so I didn’t push it.

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My boy.  My love for you kid?  Read the shirt.

I asked.  You answered.  5, 399 times you answered.  I will never feel lucky that my son has this diagnosis.  My son is more than a pre-existing condition, and I hope against hope that this, that MD, doesn’t become what defines him.  But this diagnosis has shown me the very best in people–people I am beyond lucky to know, people I don’t know, people I know only through my writing, and some souls whose identities remain elusive answered when I asked.  Thank you.  Love with a capital L to you all.

#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.