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.

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.

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 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.


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

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.


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.


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.

And Now For Something Completely Different (Sort Of)

I am OBSESSED with current events, and my obsession is fast-tracking me to inert despondency.  And fear.  I have a small forum at my disposal here–thank you, dear readers–but there are those who write with clarity and cogency more skillfully than I, so for today I leave that to the experts.  My heavy heart is getting checked at the door today, because I said I would embrace and share positivity.  And also, the death grip with which I clutch my 50.1% majority hold on my sanity is starting to hurt my fingers. I shall instead use my fingers for this:


Three months from today, Sunday, April 30, is the 2017 Milwaukee Area MDA Muscle Walk.  Last year I wrote a post about things I’d rather do than ask for money. In essence, I’d rather do ALL OF THE THINGS before asking for a hand with anything.Click here to read 2016’s Would You Rather? There are some deep thoughts here, friends.

But I asked.

And you responded.

So it begins anew in 2017.  The quantifiable ten pounds of despair I lug around with the rest of my addled-brained, drained, and pained body is asking for your help.  There are many worthy causes to which you can cast your financial support, I understand entirely.  On the rare occasion I do answer my home phone and hear the click-pause-“Hello, Wendy? How you doin’?” on the other end, I try to be respectful of the shit job the telemarketer has.  I listen politely, albeit distractedly, just waiting for their pause to interject, “I wish I could help, but most of our family’s fund-raising largesse (largesse, Wendy?)  goes to support the Muscular Dystrophy Association (OK, seriously, after two years, why does WordPress still not recognize ‘dystrophy’ and tag it for needing correction?  It’s like you don’t even know me.).  Sorry, sidetracked again.  I understand [insert worthy cause] is deserving and important for your clients, and I would love to throw financial support your way, but I can’t commit just now.  They continue; I rebut; they continue, and this usually where I end up feeling like a complete heel when I hang up.  So feel free to hang up on me.

But I sincerely hope you don’t.

Be like the cool kids!  Be on the side of right!  Peer pressure always works, right?  Be like Heather Trotter, Terry Radtke, and Rose Mary Walecki–Team Greater Than Gravity’s first Muscle Walk contributors this year–and support our team!  Oh, and by the way, I’ll never not feel super dorky saying “Team Greater Than Gravity”  because, well, obviously. 


My kid is not usually one to goof, so imagine my surprise to see him chillin’ with his cabin mates at the photo booth last summer.

So here’s the link:  Click here to hit up our team page. You can join the team or make a donation.  Either way, you’ll have my undying gratitude and get a shout-out in my not-world-famous-but-gaining-momentum-little-blog here.  I know, right?  Tingles.

Finding His Tribe

The Fine Print:  If you know me in the real world and know my son, you have to promise, no you hafta pinky swear you will never make mention of this post to him. Never. Like for reals, never.  EVER, OK?  If you know me IRL and feel like you might just maybe have to say something to my boy about it, don’t even read this. Just walk on, man.  It’s one thing for me to write about my maneuvering his MD, but this post is about my reacting to him reacting. See, it’s a kinda meta piece I’m working out here.  When your heart breaks into six million pieces for your child, you don’t want to be Janie One-Note, so in the real world you minimize this, and talk about other things, more upbeat things.  Things like, “Hey, my little kid was named MVP in Saturday evening’s baseball game by the opposing coaches” and “Yeah, we stayed in a 1950s-era fleabag roadside motel for the tournament weekend and $180 per night was quite literally highway robbery, but seeing the kids have a team-wide blast of a pool party Saturday night was worth the price of admission.”  Things where you can crack wise and make people laugh instead of worry about your mental stability.  Here is where I get to (have to? need to?) lay it down, but it has to be our little secret, OK?

For starters:  the Muscular Dystrophy Association.  Seriously.  Kelsie and Stacey–you are two amazing young women.  I am so happy I get to know you.  Though a tiny part of me still wishes I didn’t have to know you because I will always and forever wish my kid didn’t have muscle disease, I am grateful to tears at least once daily (still) that you are the face of the MDA for me.  I know there are so many more MDA staffers and volunteers I must thank, and I will trust you to do that for me.  I blubbered through camp sign-in and sign-out, and you will have to know that I’m a competent communicator in most facets of my life. I can’t make it happen around you two, not quite yet, but I feel like you’re wise beyond your years when it comes to dealing with parents like me.  Holy crap, are there others like me??  You poor things!

For seconds:  My generous friends, family, and yep, anonymous (still) stranger donors to our Muscle Walk Team Greater Than Gravity.  You covered 5.5 children at Camp Wonderland this week, indirectly or directly I don’t know–I’m not the accountant here.  Please know that every single penny of your contribution is worth it for those kids.  This I know for a fact.  And yeah, me here with the tears again.  Thank you.

For thirds:  Dillan, my son’s individual counselor.  You are going to make an incredible nurse.  More importantly, you are already an incredible human being.  You immediately took my son under your wing, and made him feel a part of something.  Before we even left Sunday, you brought him out of his shell with your words, ways, and deeds.  He wasn’t observing from the sidelines, he was right in there.  He rarely gets “right in there,” and I attribute that to your all-around good guy-ness.  He felt he could trust you on sight, and he was so right about that.  Thank you.  Really, thank you.  To my niece Lauren, who decided to become a counselor last year after my son’s diagnosis:  I love you. And even though my giant weirdo seventh-grader would do anything to avoid having his picture taken with you, he loves you too.  You have done a good thing, and that good will be returned to you.  I know this.

I say this all the time because it’s true:  I never adequately convey my gratitude with words.  Words are insufficient to express what’s coursing through my veins.  The depth of my thanks, the way my heart is skipping right now as I try to say what I mean to say?  Indescribable.  I want to get it right.  I won’t.  Words like so, very, incredibly, really, extremely are mere filler adverbs.  I’m much better in song, but since I’m neither a singer nor songwriter, and my band has yet to write a song about this, my thank you song remains unsung.

We received no return mail from our happy camper last week, and honestly I was expecting none, so we’re even. The MDA posted camp pictures throughout the week to assuage the fears of us mommies, and that had to be enough.  It was.

There were hundreds more photos, but I don’t have each camper’s parents’ permission to share.  I love this shot though.  Look at all that happy!

I missed my kid, but believed he was where he was meant to be, that he needed me less than I needed him around.  It’s the way it’s supposed to be, I understand, and I think his week was perfection.


Friday morning was pick-up.  The email cautioned families not to arrive before the assigned time, so good little soldier I am, I timed my arrival for exactly five minutes early.  Just a touch of OCD on the timeliness thing, folks.  I and another parent were dead last to arrive, because everyone else was waaaaaay early and has no regard for rules obviously! (insert smiley emoticon here) and we approached a camp employee to inquire where we were to pick up.  She kindly led the way, and this father and I walked in silence, him about 15 feet in front of me, toward the meeting hall.  It occurred to me in that moment that he doesn’t want to have to know me either, so there was a dearth of chit-chat.  It’s OK, sir, I get it.

I spy Lauren upon entry, give her a big hug and ask after my son’s whereabouts.  I find him soon enough, and you’re thinking he’s all happy to see me, bursting with hugs for his mom, right?  Nah.  He sees me, grunts in my general direction and says, “I’m finishing up a story with Garrett, Mom.  Hold on.”  Clearly devastated by his separation from me (mm-hmm), I take it for what it is:  my giant, weird seventh-grader being a giant, weird seventh-grader.  His counselor made him save me a seat next to him for the presentation (see, Dillan is a prince among college men), and that was enough for me.  I get it.

Dillan told me that he wanted to be my son’s counselor again next year, but didn’t think he would get to be because my son was so easy.  You know how in cartoons when Scooby Doo gets his bell rung, shakes his Great Dane head and does that “oy yoy yoy” sound?  Me.  Cognitive dissonance.  Easy?  By way of comparison, I suppose my kid is medically easy.  Got it.  As soon as the photo video montage began, the tears began a-flowing.  My son said, “Oh, this happened last night when they showed pictures.”  Like tears just happen, as if they were a sneeze, something physical and not an emotional reaction. We both blubbered through the whole thing, and my heart (and eyes and nose–it was not pretty, y’all) overflowed.  I brought along just one tissue FOR ME thinking my eyes might leak a bit, but was unprepared for his outpouring.  My sweet boy revealed a lot then and there.  And me without my waterproof eyeliner. Sheesh.


Intermission.  You probably need one.  Let’s all go to the lobby and get ourselves a treat because this is one long-ass piece of prose.


Checkout begins in earnest after the photo movie, and after thanks were showered upon the counselors and medical staff.  My kid’s cabin’s nurse has volunteered 26 years so far.  26 years, you guys!   He said the place kinda gets under your skin, and I can see that it would.  These kids!   Camp graduates got to say a good-bye on mic, and you know I wished I had more tissue. Camp was their place, their comfort, their I’m not the only one.   I cry my way over to the camp director, and all I can do before losing my shit completely is mutter “Thank you.”  I’m crying days later here as I rerun the scene.

I get our car queued up, my son’s had help getting his gear packed (except for the lotion, shampoo and swim trunks he neglected), so all that is left is to say good-bye.  Dillan 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 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.

The homecoming was anti-climactic, and I figured that would be the way it was too.  No worries there.  The worries reared their ugly heads when we, scant hours after his return, repacked the car for his little brother’s weekend-long baseball tournament.

“I just want to stay at home in my own bed.  Why do I have to go?  Why can’t I just still be at camp with my friends?”

Hours later, sitting poolside, unable to do anything but cry–

“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.  Or home even.  I just want to go back to our room and look at pictures.  Can I just do that?”

Yes.  You certainly may.

And that’s when I wanted to die.  He knows.  He’s known longer than we have.  The only way I was able to make him smile was to drop the f-bomb.  Stay hot, mom.  It’s impossible to answer rhetorical questions such as his.  There’s no logic.  Why does he have MD?  Why does anyone?  I don’t fucking know.  It’s a perfectly legitimate question, but it’s nowhere near fair. So I said this:  “You had this amazing week at camp because you have MD.  I fucking HATE that you have MD (finally earned a grin from the tall one), but I’m thrilled you got this camp experience because of it.”  He finally understood what the Muscle Walk was about.  I told him that friends and family donated all that money because of HIM, and if not because of him because of me, so actually yes, because of him.  I told him someone I may never know gave our team $1,000 because of him, that I’d never felt more loved, but I’d also never felt less well-equipped to be the mom.


Find your tribe.  I wish I’d written this.

I promised him that the passage of even one more day would lessen the ache his heart felt, and he let me keep my promise.  He’s called his counselor only once to check in so far, and has been messaging here and there with one of his cabin mates.  He found his tribe, those boys of Willow, and I get how finding your tribe is life-changing.  He’s already plotting and planning for next year, and that acute pain he felt Friday and Saturday seems to be on the wane.  Mine?  Well, that’s another blog post entirely.




Letters from Home

My big kid’s been away at camp since Sunday.  If the MDA Facebook page is to be believed, and why wouldn’t it be?, the kids are having a blast.  I was scrolling through pictures the camp director posted a short while ago, and the first one I saw of my son stopped me dead in my tracks.  He’s so big, my boy.  He’s taller than his college-aged counselor, and very suddenly, he looks different.  Older.  More independent.  Even more guarded.  Mature?  Different somehow.  My heart is arrythmic right now with this glimpse of a changed him away from me.

Before departure, families were asked to write letters to the kids and specify when they were to be delivered.  It’s a fool’s errand to try to write reality-based, real-time-ish missives of love from home, but I tried–fake it til you make it, or something like that anyway.  The underlying message was “I love you and I miss you, but I don’t want you to read one word that might make you homesick.”  The transcripts follow, and if you think I’m a generic mom, well, you’re WRONG.  Obviously you haven’t kept up on the hilarious, but warm autobiography I publish here.  I just didn’t want to give the kid one scintilla of a notion that life back in the 414 was anything short of hunkydory.  He was to have the best time ever, and not worry about us back home.

Monday, June 13

So you just had your first night of sleep-away camp!  You’re such a big kid now, and you never listen to me when I say, “Stop growing!”  You’re not supposed to stop growing obviously, and I know camp is only one of many adventures for you as you get older and more mature.

I can’t wait to hear all about your counselor.  Is he a pretty cool guy?  Do you see Lauren ever?  I’m pretty sure you’re the only camper whose cousin is a counselor there too.  Last year Lauren became a counselor with you in mind.  I know you don’t fully understand why that is a huge deal—and how it shows how much she loves you, but I hope someday you will.  Tell Lauren hi from me.

Are there more boys or girls at camp?  How ‘bout the campers’ ages?  Are the kids little, or more middle-school aged like you?  I hope you remember to be a good friend—be polite, keep your head up (and also look where you are going!) and listen to the other kids.  Listen like you mean it, and mean it!

Today was E’s last day of school and then he goes to YMCA Day Camp the rest of the week.  We may go to Chill on the Hill, but it will depend on the weather and also baseball.  Don’t forget we will be in the Dells this weekend for E’s tournament.  Grandma and Grandpa will be meeting us there.  I’m excited to see them too!

I hope you got to do some fun stuff and maybe even have a little run over to the snack shack.  Write it all down so you don’t forget any of it.

We miss you like crazy, but know you are in very good care.  The MDA says camp is the best week of the year—do you agree?

Be a good kid, and have fun!  Enjoy the moment—I know you know what I mean.

Love, Mom

PS—E says “ninnercrommie.”  He’s so weird!


Tuesday, 6/14

Hi Son,

We miss you!

I was wondering if there are any giant bugs at camp.  You know how I keep calm and collected with giant bugs!  Kidding!  But I am thrilled you are enjoying the great outdoors.

What was last night’s special activity?  I wondered if you guys sat by a campfire and sang songs at night.  I don’t have a great singing voice, but I remember loving to sing camp songs when I went to Girl Scout camp.  Hopefully you sing along.  It’s not at all the same as performing—have fun.

When is motorcycle night?  I’ve never been on a Harley—not quite my thing.  Maybe it’s yours?

Are you getting any good ideas for stories?  In a few weeks you have writing camp at UWM, so maybe you’ll have fresh experiences and material to draw upon.

Tomorrow is my last day of school, and may I just say, YEEEEEE-HAW!!!

I love you, Big Kid!  Hope your days and nights are kick-butt!

Love you,

Cranjis McBasketball

A/K/A Mom


Wednesday, June 15

Dear Hingle McKringleberry,

By the time  you read this I will be done with school!  Your summer rolled out a day early—lucky!!  We have a lot we’re doing this summer, but it’s nice not to have to set a 5:15 AM alarm.

So what’s the scoop?  Do you miss us or are you too busy and excited even to think about us?  You better NEVER be too busy to think about your mom, Mister!  You’ll probably have grown another 6” during the time you’re at camp.  Will we even recognize you for pick up Friday?

Tell me about the best part of your day yesterday.  Was it swim or rest?  Lunch or snacks?  Who’s got the coolest wheelchair?  Speaking of wheelchairs, have you learned anything about how they operate?  With your interest in designing trains and planes, maybe you can engineer some super smooth wheelchair modifications.

Are there any campers who live near us in Milwaukee?  From how far away are kids coming?

I’m very curious to know what you’re thinking about these days.  The house is very quiet now that I don’t hear, “Hey Mom” 642 times per day!  I also don’t hear “Not yet. . .” and I’m hoping the counselors aren’t either.  Please be a conscientious listener and be aware of what is going on around you.

I love you and miss you tons,


PS—Say hi to Lauren from me


I can’t recall how I completed this last camp letter.  I ran out of fake news and my left hand ran out of neatness.  Now that he’s been gone five days, I know I’d develop a very different bunch of letters.  Next year, right?  And don’t judge the penmanship either, OK?  Some handwriting analyst would have a field day with the inconsistencies found herein.

One of the camp activities was wheelchair basketball, and my son was placed in a wheelchair for the game.  I totally GET IT, but you guys, I gasped when I saw the photo.  Photographs can but don’t always catch genuine emotion.  Was he totally into the experience?  Was it fun?  Was he freaking out?  Did he give the “oh hell no, ain’t no way” in the second before the picture was snapped or was he a gamer?  I showed his younger brother photos from the day, and when he got to that picture, little bro looked stunned.  Looking at me sideways, oh-so-quietly he asked, “Is he in a wheelchair now?” Every pore of my body felt flushed and I broke out into pinpricks and cold sweat, and before I could respond with a gentle “no, not yet,” I felt the burn of tears.  No.  Not yet.

I saw the future, and can’t unsee it.  I wonder if he saw the future too.  I wonder if he’s better or more reasonably prepared to face the future than I am.  I hope so.  Sometimes my kid can’t plan how to put on both shoes, but can prepare and price out an international travel vacation itinerary.  He pens and illustrates elaborate cartoons and can imitate detail like you’ve never seen, but can’t seem to practice piano without being told.  My own child is often an enigma to me.  What does the future look like to a 12-year-old bigger than everyone but still little boy?