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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‘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?

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

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.

Collective Nouns

Listening to my iPod on the way home from Cincinnati Sunday night, the Air France CRJ200 is building up to its 180 or so mph needed to take flight, and the lyrics from Odds Are “crashed in an airplane” come blasting through my earbuds.  Not cool, universe.  I used that song as my mantra while driving to my kid’s first-ever neurology appointment, and it was wildly unsuccessful in staving off the MD diagnosis.  It did however shield me from a fiery crash en route home from my concert bender Sunday, so I live to write another day. Go, me!

At Saturday night’s show, my fave singer on the planet asked the audience who had an interest in collective nouns, and dork me was like, “oh yeah, totally me.”  So now this is on my mind since Saturday.  All the time.  Who contemplates collective nouns?  Thanks a bunch, Ed.

I began this post titled, Down, Really Down, Up, Holy Crap UP, And Then Down Again.  It was a little busy, I’ll grant.  But now that I’m laser-focused on flocks, pods, murders, congresses, and litters, I am searching for a word to capture all of the emotions running laps in my brain these last few months.  What do you call multiple accordions?  Ah, you had to be there.  Nevermind.

Down

I pretty well covered that in my previous post, and you know how I hate beating a dead horse.  Ahem.  Maybe I’m not really depressed.  I think after last weekend, I’m not actually depressed. Definitely not.  I had to retitle this post because focusing on feeling low isn’t even needed, so let’s all just pretend this never happened, m’kay?

Really Down

At my son’s occupational therapy appointment last week, his therapist suggested it was time for a splint.  Because of the muscle contracture in one of his wrists, she came to believe that splinting his wrist will be one way to maintain some range of motion in a passive way.  It signaled for me the end of an era.  My son has in the two years since his diagnosis begun to need equipment for MD.  Damn that was a quick couple orbits around the sun.  I know I was all leaky eyes when the OT was explaining this to me, and as I in turn tried to clarify what I understood for my son.  Damn.  I ferried him back to school and began the ugly cry in the car the second he passed through the doors.  The ugly cry persisted into my workplace, accompanied by a serious inability/lack of desire to communicate.  Poor Valerie and Jill had to witness the mascara trails directly, and suffer through the sniffing between my commentary of, “I know it could be worse, someone always has it worse.  It’s just that, well, compared to not having MD at all, having MD fucking sucks.”  Having an allied health professional refer to your child’s hand as “well not deformed, but you can see how it’s different” felt like sucker punch.  It’s an honest assessment, but that doesn’t mean it’s not painful.

Up

I met my Muscle Walk fundraising goal.  Which is freaking amazing.  So most definitely trending up.  But not HOLY CRAP up yet.  Keep reading.

 

HOLY CRAP UP!

If you’re new here, you may not know that last year our MDA Muscle Walk team received a $1000 anonymous donation.  Not knowing the source of this incredible magnanimity has eaten me up since last spring.  I’ve had a few moments of absolute clarity: I KNOW who it is!  It’s . . .  only to have been disproven.  I have as much idea now as I did then, which is exactly not one teensy trace of a clue.

I receive an email from the lovely Elizabeth at our MDA chapter, asking how I “managed to pull this off.”  Because I was occupied weighing the am I depressed or am I not? scales, sicker than I’ve felt in some time, and wanting only to spend time with my dear Netflix friends, Lorelai and Rory Gilmore of late, I hadn’t looked often at our Muscle Walk team page.  Holy crap.  HOLY CRAP!!  One thousand dollars.  To our team.  What?  Who?  Why us???

True charity is shown when someone offers something remarkable, genuinely life-altering, y’all, and asks nothing in return, not even acknowledgement.  I love you, Anonymous.  I have no less affection for any of our team supporters, but in my circle, a thousand dollars is a big chunk of change.  Someone saw to it that one thousand dollars got directed to me.  To ME!  To us.  I said this last year, and I’ll implore you again:  please tell me who you are.  I’ll keep it between us, I promise.  Please let me thank you properly.  Although, seriously?  How could I possibly do this right?  The mystery is a delight and a fright at once.  What if I was a complete crab the last time we met?  What if I seemed unappreciative in some way?  Know that I’m grateful beyond words.  I tried last year and failed, and I’m failing again to put it in print.  Thank you.

Remember what I always say, kids: Second row is not the front row.  THIS is where you want to be standing to see your favorite band perform.  Front and center two nights in a row was quite a coup.  For the record, the band is of course HAPPY to see us, not scared as some of you have suggested.  Well, they’re probably happy anyway.  Wouldn’t you want to see smiling faces hanging on your every note down in front?

I want to tell you about my weekend.  ALL about my weekend.  I could relate every detail, every nuance, every tossed monkey and undergarment (even the one Nikki put on my head Saturday night), but as the song goes, it’s all been done.  It’s etched in my memory and in my heart.  My band performed MY SONG Friday and Saturday evenings, and I swear, my heart was teenage dreamy fluttery the instant Ed hit the first note.  I couldn’t breathe.  And yeah, I’ve heard it live before a handful of times.  I just needed it now.  Tyler gave me a shout-out from the stage at the very end of the evening Friday, and my cheeks still hurt from the hours-long smile that’d been pasted on.  My girls.  My friends.  My band.  My song.  Geez, apparently I have petulant toddler issues. Me, my, mine!  I do understand that pronouns other than “my” exist.  Just not in this context.  Girls, I miss you acutely.  Guys, see you again in May.  I’m sure you’re just as excited to see me as I am to see you.  Wait, what?

Because the odds are that we will probably be all right, I did land safely back in MKE Sunday evening.  And what to my wondering eyes does appear?  The three loves of my life, hanging outside baggage claim, each poised with a bouquet of posies.  Tulips–my flower of choice and a beautiful reminder of renewal and hope.

And plastic spiders.  Because this is what my younger son and I do.  He totally started it, but I totally continued it, and now we wage war nightly over who can deposit the spider more plausibly or more sneakily to try scare the shit out of the other.  Because I am a GOOD MOTHER!  But look at the sweet little note Mr. Spider left me under my pillow.  My baby?  My love for that kid is greater than gravity.

Breaking Even

My original intent was to end on a downer, because that’s how I felt Sunday, as I sat alone in the airport awaiting my return flight.  I love and already missed my #Ladiesladies SO MUCH, but then remembered that going home meant I could see the boys I love and missed SO MUCH.  Sometimes life shakes out a lovely symmetry.  I’m not down.  I can’t maintain holy crap up either, but I’m OK.  I’ll be OK.  What’s the collective noun for people I love?  My tribe?  My family?  My love?  Yes.

This Is Not A Blog Post

It looks like a blog post, sure, but it’s not.  Nope, it’s my February plea to you begging for support of our Muscle Walk Team in person or in dollars.

I have nothing to offer in return.  Of course I’ll include you in my “These People Are Freaking Awesome and You Wish They Were Your Friends Too” thank you list, so there’s that.  You’ll probably feel pretty good that you helped individuals stricken with super shitty diseases like ALS and the many variations of muscular dystrophy.  To steal from the MDA:

The freedom to walk, to talk, to run and play.  To laugh, to hug.  To eat.  To breathe.

Each day these freedoms are taken away from kids and adults with muscular dystrophy, ALS, and related diseases that weaken muscle strength and limit mobility. Together we can change that.

And, HEY!  Bonus, y’all!  Through February 28, donations made will be matched by Educators Credit Union, so you’ll be donating twice.  And everyone knows that twice something is waaaaaay better than just once of something.  Unless it’s like chickenpox or middle school PE class or really bad sushi.  So except for that, twice is better.  So donate to our team twice.  But not really twice, you only have to do it once, the credit union will do the rest.  I feel like the point has been made.

Click here to make a donation to our team.  Then share or retweet this not-a-blog-post.  Pleeeeeease??  You can also join us April 30 at the Milwaukee County Zoo.  Engage in a little weekend philanthropy.  Go ahead, pat yourself on the back.  I totally will do the same when I see you.  Actually I’m more likely to hug you and probably get all sappy on ya–I am who I am after all, but again, you probs get the main idea of my message here.  THANK YOU!  That is the take-away.  Thank you.  With all my heart.

xoxo

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:

2016mw-logo

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. 

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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.

See, It’s MY Car

Few things feel as much as a violation as strangers rummaging through your private property.  Yesterday as we watched the Green Bay Packers stick it to the Giants at the frozen tundra of Lambeau Field (you know the voice, right?), some dick invited himself into our car.  Sure, I could’ve used “interloper” or “budding felon” or “low-life,” but I feel like “dick” captures his essence.  Her essence?  Statistically it’s probably a male, so I’m playing the odds here.

We were sitting in our living room, which faces the street, at which were weren’t focused because hello? Packers game??, when someone stole part of our portable DVD player and rifled through the rest of the center console and glove box.  Because I work in the ‘hood and practice vigilance and really, more because we have nothing of value to steal, nothing of value resides in the car.  There was nothing to snatch quickly but the second video screen for our portable DVD player, so he absconded with an essentially useless piece of technology.  I fully expected to find the screen laying in a nearby alley or gutter when I got home this evening because it’s worthless without the control unit, which remained.  There may have been $.13 in pennies in the center console, and that’s not a typo–the decimal is in the correct place–we maybe had thirteen whole shiny pennies, probably really only like eleven though to steal.  They didn’t even bother with the pennies!  Suckas.

Tom came in from having put the car in the garage, STILL broad daylight y’all, asking if I had brought in the DVD screen for any reason.  He had that uneasy feeling, inexplicable until the puzzle pieces click in place, that something about the car was amiss.  I’m no Felix Unger, but neither am I one to rifle through shit and leave it tossed all over the car’s interior.  Yesterday was sunny and clear for the first in a long time, and we were left to conclude that we’d been robbed.  Basically had we turned our necks window-side, we couldn’t have helped but see it, but the guys in green and gold were so distracting!  Not gonna lie, you feel kinda duped when your car is robbed while parked in front of your house.  In broad daylight.

My stomach churned for most of the second quarter of the game.  This could’ve been attributed to the Packers’ sickly first half offense, sure, but no.  The intrusion hit me physically; my reaction at a visceral level, and I felt sick.  Fortunately, Aaron Rodgers connected with Randall Cobb to end the first half with a holla! and I was over it.  Well, not entirely over it because here I am twenty-four hours later writing about it, duh, Wendy.

rodgers-cobb

So instead of staying annoyed with humanity, I’m choosing good over stupid.  What a peculiar segue into my, “HEY YOU GUYS!” plea to support Team Greater Than Gravity for the 2017 MDA Muscle Walk, huh?

I began blogging almost exactly two years ago, after #1 was diagnosed with muscular dystrophy.  I was paralyzed.  A neurologist told me my baby, my firstborn, my sure-he’s-clumsy-but-eventually-his muscles-will-catch-up-with-his-height was going to live his life never catching up.  I’ve written about that day before, and won’t revisit it today.  The anniversary is right around the corner, so it’s sure to be an up and coming post.  Where was I?  I was paralyzed.  I knew not what to do or say, and felt a helplessness and despair I’d not wish on my worst enemy.  Only as I wrote, I began to understand my feelings.  It’s hard to explain if you’re not the writer type, but writing told me how I felt.  Often I didn’t know what I felt until I read my first months’ of posts, and I’d go, “Oh, I’m frustrated that the Y closed,” or “I’m terrified to meet other MDA moms and dads,” or “Sometimes I’m pretty funny, and sometimes I’m a ridiculously easy crowd!”  Anyway. . .

After a time, my paralysis ebbed a bit that spring, and I found determination to raise funds for the Southern Wisconsin MDA Chapter’s Muscle Walk.  In year one, our team raised about $1900.  I was mystified at my good fortune to have people in my life, so concerned and generous, that they donated to our effort.  I DID something.  Well not me, it was YOU, you freaking amazing people, but I asked.  I did something.  WE did something.  Last year you more than doubled that, and I swear to the stars that if I ever find out who anonymously donated $1000 to our team, I will kiss you on the mouth.  And you know I am NOT much for hyperbole (insert winky-winky emoticon here).  But even if you didn’t donate $1000, ’cause really?, I love you for being here with me.  Thank you.

Today, to show the world that I’m picking goodness over misdemeanor theft, I open my 2017 MDA Muscle Walk page.  Join us, won’t you?   Click here to donate to or walk with our team on April 30.   MDA Summer Camp is a life-changing experience for kids with muscle disease.  That is certainly NOT hyperbole, folks.  It’s also not that last time you’ll hear me beat the drum for our effort.  #sorrynotsorry  Last year we helped fund camp for 5 kids and more.  But of course you can’t mathematically divide a child.  Obviously.

Life changing, for reals.

My kind of paralysis ebbs and flows.  Today, I moved forward.  Purpose.  Momentum.  I’ll even kick in the first thirteen pennies to start.  Shine on.