Did I Say That Out Loud?

Score One For The Good Guys

Some months ago I shared a booze-fueled, rant-y post about how the workers compensation insurer managing my husband’s injury case mandated an independent evaluation of his hearing. They had previously questioned his need for bilateral hearing aids given that only one ear was torn from his head. How do these people live with themselves?

I didn’t make it to med school, but massive head trauma is kind of a global thing as are its effects; though it can result in specific loss, it’s path may be less predictable than say a stroke or aneurysm. My husband can get real ornery at accident-related doctor visits, and this independent hearing evaluation and ENT consultation brought out the flattest of affects in him. I won’t say he was rude because I have a pretty good idea how he felt, but I’m sure he was perceived as rude. Anyway.

We received our copy of the doc’s independent evaluation in the mail this week therein stating his belief that hearing loss was secondary to a medical history significant for an 8-inch open flap injury to the right lateral side of the head with exposed skull. The right ear was almost completely avulsed. . . complex multidirectional fracture of three segments of the temporal bone, hemorrhagic debris in the middle ear cavity. . . a large degloving scalp laceration to involve nearly the entire scalp with retained foreign bodies. . .right pulmonary contusion, left pulmonary contusion, left 3-4 rib fracture, right 8-10 rib fractures, occipital skull base fracture. . . liver contusion, left scapular body fracture, C6-7 spinal fracture. . . and facial nerve paralysis.. . no history of previous hearing loss. . .

Yet somehow he lived.

To have to endure treatment like this? This is what this insurance company questioned?? To what, not pay for hearing aids?

Reading his history again slammed me right back to that Emergency Department. Why is this set of memories so relentlessly specific and vivid? I am not the same person I was before his accident. Expressly revisiting it again rips off the band-aid and immerses me into a brine bath every single time. I just don’t think I’ll ever get over it. I miss pre-May, 2019 me.

Cocktail Hour

The details are irrelevant, but my mama heart broke a little bit last week when someone approached me to say I needed to teach my son how to hold a wine glass (obviously it was filled with WATER because he’s still too young to drink legally. . .). This person, I believe in good faith and without malice, relayed his observation that my kid’s death grip cracked him up, how he laughed at the way my son held onto the entire stem of the glass like his life depended on it. That’s pretty close to verbatim.

I quietly responded that because of his muscular dystrophy, his grip strength is poor. That I think he holds on tightly because he knows he drops a lot of things and this is how he compensates. An apology followed. To be clear, I truly believe he thought he was helping, maybe so that other people wouldn’t tease my kid in the future. Not tease him about the MD, but about the way he apparently looked like a clod in the way he held the glass. The “clod” part’s not verbatim, that’s mine–what’s a good word for that?

But it stung. If someone who knows my kid feels comfortable to call that out, it made me wonder what other people who maybe aren’t so nice notice, think, or say to and/or about him. In the grand scheme of life it wasn’t a huge deal but provided that view from the outside that I’d forgotten. Maybe tell him gently but directly or maybe just who cares about the way another person holds onto a glass?

Ableism

I recently presented to my Speech-Language Pathologist colleagues on the topic of ableism in stuttering. I didn’t love my Google Slides theme, but by the time I got most of the meat in my presentation, I didn’t feel much like reformatting, so cutesy quotation marks and stupid font theme won by default.

Check that definition though.

In it, I admitted to being an abelist parent. Intellectually I understand my son’s disease process but I can’t help believe and feel inside that things would be better for him, tasks of everyday living would be easier for him without muscular dystrophy. The wine glass incident shed light on the differences and challenges MD presents. Yes, my son HAS been provided support and summer camp opportunities because of this dreadful diagnosis and for that I’m sincerely and will be eternally grateful. I don’t view my child as an less than, his way of being isn’t wrong or bad or unfortunate, and holy crap has he grown up since heading off to college!! But any day you give me the choice of does he have MD or doesn’t he? It’s a hard no. The hardest of passes.

I guess I’ve got some work to do. The whole time I was prepping my presentation, I was avoiding looking in the mirror about my ableist beliefs about my own child and I knew it.

Go Away!

One of the bakers at our grocery store told me to “go away” the other day as I grabbed a cake from the bakery case. For once in my life I didn’t stand agape in stunned silence or skulk off muttering WTF-y kinds of comments. I looked her in the eye and asked “Did you just tell me to go away?” which was apparently the exact right thing to say. She stood there, kind of staring at me, not knowing what to say then asked me how the weather was. It was a lovely November afternoon, in case you were wondering.

My initial reaction was pretty much WTF?? Can’t lie–I thought about speaking to a manager or emailing the store later. I reran that exchange in my head on a loop til the next morning, still measuring the degree to which I’d felt insulted and then I talked to my friend Nicole who has the BEST laugh and we laughed and laughed! In the end, I did nothing but share my story with my coworkers and later on social media. It WAS funny. She busted herself out saying something out loud that I’ve managed to keep in my head for years. I mean, she knew she screwed up and I got a big laugh out of it. And let’s be honest, ALL OF US have at some time in our work lives, almost said that out loud ourselves.

The Free Turkeys of the University of Minnesota

To my American friends, Happy Thanksgiving. To my friends and readers outside the US, have a great Thursday. I’m thankful for the generosity of your time over these years. I’m thankful I can still put on a decent spread for Thanksgiving dinner. I’m thankful for incredible friends across the globe and across town. I’m thankful my children are safe and cared-for. I’m thankful we won this round with the insurance company. I’m thankful I have enough.

And I’m thankful I’m not a wild turkey in late November! This rafter of turkeys hangs outside my son’s dorm–I swear I am not making this up. Turkeys are neither intelligent nor regal creatures, but if you’re roasting one tomorrow, I hope yours is delicious.

Hey Look Ma, I Made It

My big kid graduated from high school! Milestone events like a graduation create space for reflection, and I’ve been taking a hard, long look in my rearview mirror this past week. I see my son on his first day of school, I see him performing flawlessly at his first piano recital and drumline competition, I see him as I drove off after delivering him to summer camp, I see him in 2018 wearing his blue “Class of 2022” high school orientation tee shirt, I see him looking so dang grown-up in his light grey prom tux. I remember these major milestones and wonder at all he has experienced.

I also see him in a million quiet, unremarkable moments in between. I see him lying in the grass petting our sweet Izzy-girl when she was still with us, I see him perched atop our coffee table strumming along to every Jack Johnson song on the Curious George movie soundtrack start-to-finish, I see my elementary school-age author and illustrator drafting his own Titanic and tornado tales at the dining room table, I see him asking me if MD meant he was going to lose his walking.

At my eye exam last week, my optometrist, father of three under five years old, asked which stage of parenting I thought was the best. It didn’t take me long to reply that every stage has been the best. God, I miss his sweet, squishy little face, how his first-blue-then-green eyes would light up when I walked into a room. But I also love that he’s created a life apart from me, forging friendships, developing his own internal compass, his own beliefs and opinions.

Lots of parents share memes about their teens’ attitudes and I recently shared with my graduate that seeing those moms-group memes made me realize that neither he nor his younger brother have ever pushed back for no good reason. This is not to say they’re perfect and that they’ve never given me even a moment’s grief, but it’s mostly true: they’re good humans with an infinitesimal amount of attitude. I’m lucky but I’ve also been an active, present parent, so I think I had a little something to do with it, but honestly, I know they are caring, decent young men of their own accord. Blind to the heaps of laundry and mountains of crap on the floor, oblivious in the ways of cleaning their bathroom, and for the love of god take out the trash without being reminded!! sure, but good at the core. Graduation made for a good time to notice the good.

Taking it all in, it would seem!

Prior to the ceremony, I told my son I would behave in a dignified way, that I wouldn’t whoop and holler when they read his name, but that I would internally be bursting at the seams, likely dissolving into a puddle of tears. I’m such a liar. My kid looked so. damn. happy. and was having the time of his life down on that arena floor. I was unable to contain my exuberance and oh yeah, I hollered and cheered. And he smiled and kept smiling as did I. As AM I still.

The fifth grader who, back in 2015 asked me if he was going to lose his walking, walked across that stage as a member of the Class of 2022, his face the purest expression of happy I’d seen. I did not cry last Tuesday, but I am now. For all the exceptional highs, all the heartbreak and devastating lows, and everything in between, my eyes well up, but not over. I believe this is what joy feels like.

Their recessional song was Hey Look Ma, I Made It by Panic! At The Disco, a perfect fit for the occasion. My kid tossed his cap and bopped his way out of the arena still smiling. The downtown street in front of the arena was temporarily shut down to make space for the grads and their families. We reunited after fifteen or so minutes to congratulate him and his friends and to say that we’d stick around waiting for him as long as he needed to take it all in. What was to have been an evening of thunderstorms ended up picture-perfect, near eighty degrees with a warm breeze–I don’t think anyone wanted it to end.

Hey Look Ma, He Made It

I am not sure how to close out this post, the right words just won’t find their order. His school invited families to write a “senior send-off,” messages that would be printed and shared with each senior at their graduation practice, so I’ll leave you exactly as I left him.

When I think about your high school years, it’s easy to think about what you didn’t get to do. Your freshman year ended with Dad’s accident, sophomore year ended abruptly with the scary, uncertain, apocalyptic feel of the pandemic closures, you didn’t even get to attend one live class your junior year, and senior year has been fully masked so you’re still not exactly experiencing a normal year in the way you “see” your friends. But instead of what didn’t happen, I hope you remember the incredible things that DID.

Attending Reagan opened so many musical doors for you. I don’t know if you can even remember how excited you were about Radio Reagan freshman year, but I do. I was entirely blown away by your participation in the competition drumline! I could barely believe my ears and eyes the first time I saw you perform. Auditioning and being chosen for Milwaukee Youth Symphony Orchestra was another accomplishment, and I was stunned again the first time I heard your Calypso ensemble. I know how much you wanted to be part of the Pit (so glad you got to this year!), and you just don’t know how exciting it was for me to hear musical compositions YOU wrote being performed.

You met kids whose families come from all over the globe and through your classmates gained a broader worldview than I ever had during my high school years. Your IB classes opened your mind to conversations, experiences, and opportunities I would still love to engage in myself. I’m so proud of you for selecting and sticking with Full IB. Through your challenges, you learned to reach out for help and I KNOW how hard that is/was for you. Be grateful for your teachers whose gifts they freely shared with you. You connected with a number of adults at Reagan–recognize what it was in them that made you feel safe and cared for and try to return that to others in your time, in your way.

I don’t expect you to have all the answers as you head off to college, but I hope you keep asking questions. I can’t wait to find out what it is that lights the fire for you as you move forward in this world. I’ve got this feeling that you are exactly where you are meant to be as you head to a university 299 miles away from home. I can’t imagine how quiet our house will be while you’re at school, but I know that you’ll be forging YOUR path, the path you’re meant to make and follow. Remember the joy you felt at prom. Remember the good friends you’ve made. Remember the classmates and teachers who’ve inspired you and left an imprint. And know that all that and more still awaits you. Endings are hard, so I won’t tell you there won’t be some sad moments mixed in with the incredible excitement, happiness, and pride you should feel as you graduate–the word “bittersweet” exists for this very occasion. I love you more than you’ll ever know and I’m proud of you, Kid. Love, Mom

And now, let’s have a party, what do you say?

Playing the MD Card

If you had told me in January of 2015 that in six years, my son would be applying for a summer job, I’d have been flabbergasted. Every so often I’m reminded of what I consider the “early diagnosis” days. I don’t know what I saw in my son’s future, but I do know that I didn’t think it particularly bright in terms of mobility. My heart broke for him, and my view was a glass half-empty future for my kid. Everything changed that day.

But. Six and one-half years already have passed. My son isn’t an elementary school student; he is heading into his senior year of high school. He’s achieved some benchmark life events unimaginable to me back in those early days: he plays in a competition drumline, he is a member of a calypso steel pan ensemble (and let’s face it, there just aren’t that many kids who can say that), he got his driver’s license, he grew his hair rock star long, and subsequently lopped off those rockin’ locks.

Next in the progression from high school couch potato to productive member of society comes the summer job. As industrious as I am as a real adult person, my parents too shoved me into the abyss of the world of work my senior year. I recall, not proudly, high school summer days that I slept til the early afternoon. It takes a special kind of sloth to sleep through the noon airing of Days of Our Lives, but hey, at least I made it to vertical to catch General Hospital, which aired here at 2:00 PM. I was positively petrified to work. Not OF work, but TO work. The prospect of a job interview and working with people I didn’t know was paralyzing. I now recognize that fear as not-sloth but anxiousness, but I am certain sloth was my parents’ perception.

Recently we met with friends whose son is off to college in fall. Their son is as eager as ours to leap in to the pool of wage-earners, which is to say not much at all, and Sean put it into words perfectly: You don’t need a job because you need money, you need a job so you can learn how to work. THIS. I can’t tell you how many times my husband and I have repeated that since dinner that evening. And by the way, who flambés Bananas Foster on a quick “let’s hang out tonight” basis? Jane. Jane does.

At present, the service industry is suffering badly from a diminished workforce. If you’ve ventured back into the post-quarantine world of dining out and shopping, you’ve likely seen “Help Wanted” signs posted in the windows and on doors of retail and bar/restaurant establishments. Our school district sent email upon email with links for kids to explore local job opportunities. We were hopeful our son would become, shall we say, one such explorer?

Thanks for the pic, Pixabay.

The boy can procrastinate like it’s his job (yeah, I know. . . sorry about that particular turn of phrase here), but blah, blah, blah, long story short, my kid had a job interview last week. I work with students my son’s age in speech-language therapy. While many high schoolers think having to go to Speech therapy in high school is super lame (read: they ditch unless you take great care to build relationships with them, working on concepts they view relevant and important or meaningful to them), they almost all tune into therapy activities involving language and social skills needed for the world of work. There is so much nuanced language and social communication required for applications and interviews alone, so it’s therapy time well spent.

SLP mama here worked with her boy to practice interview questions and answers. I don’t know why this surprised me, but my kid looked at me like I was magical when he discovered I actually knew what the hell I was talking about! Nevermind that I have interviewed SLP candidates for jobs in our district for almost twenty years now, so I am PRACTICED when it comes to interview behavior on both sides of the table. . . I think it was a window into his mom as an actual person who knows actual things that threw him so. Anyway, I thought he was as ready as he’d be as did my son, and off he went. During the post-interview interview interrogation with his dad and me, he reported feeling that the interview had gone well.

To my understanding, it is not legal to ask a job candidate if he or she has a disability, but we did tell our son that it might come up indirectly. There are some quite real physical limitations inherent in a muscular dystrophy diagnosis, and it’s also required that one be truthful in a job interview. He thinks so rarely about MD that he says he sometimes forgets he has it. I guess when you don’t know life any other way, you just plow through, right? He’s never known the ease of fluid movement or tremendous strength, so you don’t miss what you never had. Something like that.

His practice answers made me cry. He was forthright and direct: here’s what the disease is and what it means, and suggested possible easy accommodations and strategies. I do not know exactly what he disclosed in the interview, and I’m not going to beat him over the head about it. He did speak about both the interview and MD with his friends in the days leading up, and the very fact that he even mentioned it says how much it had to have been on his mind. Teenagers aren’t known for their top-notch decision-making skills under the best, most comfortable of circumstances–I’m going to hope he said or did what felt right and good and safe for him.

My husband and I walked the dog that evening, chatting about our kid’s big first. The job sounds like a nice fit, and I asked if my husband thought our son would land it. He said that he thought he would if he played the MD card. Ugh. Really?? Who would choose that card if they weren’t dealt it? No one. No one would select degenerative neuromuscular disease over no degenerative neuromuscular disease, and no one would want to “play” it. My kid just wants to shut us up, earn a couple bucks, and dip his toes into the world of what comes next. I’m not even hammering on him to check his email every 10 minutes or so. He is supposed to hear back in the next week or so, once he clears the criminal background check (background check???). My fingers are all kinds of crossed. For the job offer, not the criminal background check thing! As guileless as they come, that one is.

As he gets older, my son has to face and make more and more mature, complex decisions. And more and more I realize that my story to tell is nearing its end. Everything changed that day. For me. Not for him.

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.

A Jackson Pollock Thanksgiving

A friend and I exchanged text messages this week, each of us revealing trepidation regarding our preparations for the upcoming Thanksgiving holiday.  Every so often, if I do say so myself, I completely nail a text message, and on this one to her:  I nailed it.

Holidays are good, but not without challenge.  It’s OK to be anxious about that.  There’s always that expectation of the ideal Normal Rockwell family gathering.  Ours ends up being more like a Jackson Pollock painting.

472px-_Freedom_From_Want__-_NARA_-_513539

The idyll you envision your Thanksgiving table to be. . .

pollock-painting

A linear representation of MY Thanksgiving preparations.

Every year since I began telling my tale here, I’ve written a message of thanks and gratitude on/around Thanksgiving.  Though I’m struggling mightily these days, the show must go on.  I’ve left no trail of daisies and unicorns in my wake in 2019, but despite my, shall we call it “malaise,” it matters that I acknowledge the supporting cast and crew who make life a little sweeter and the spirit of Thanksgiving ring a little more true.  If I fail to offer up thanks to the enormous army of good friends, family, and even strangers who showed my family and me kindness and goodwill this year, I’ll regret it.  As I reviewed previous Thanksgiving posts, I was tickled to notice that many in my “I’m thankful for you” crew have stuck with me for years.  Boy, I thought 2015 was going to crush me, but 2019 makes 2015 seem like amateur hour.  I was less tickled to notice I was a better writer in each of 2016, 2017, and 2018.  I thought you’re supposed to get better with practice, right??  Lies.  I’ll just chalk this little slide up to 2019 too.

If you even so much as thought about me or my family in a positive light this year–thank you.  If you didn’t verbally express it or text it, email it, or snail mail it, but you so much as thought about us for one poof of an instant and wished us well–thank you.  I do believe my husband’s miraculous physical recovery is based in his own indomitable spirit bolstered by this type of support.

If you provided dinner for us or if you sent us a gift card for food after the accident, if you brought pie or ice cream–thank you.  You helped nourish our bellies and souls.

If you sent us or handed us money to help cover our bases this summer–thank you.  Prior to our life-altering May, I hadn’t really understood the tradition of slipping cash into a get well card or sympathy card.  Oh, terrifically humbled, I get it NOW, and we wouldn’t have bridged the summer gap without you.  It’s balance enough not getting paid all summer, but to have been docked several days’ pay while Tom’s income took something of a hit, felt insurmountable.  But you helped us climb and summit that hill.

If you visited Tom in the hospital or in our home at any point, and visiting us isn’t something you’d have otherwise normally done–thank you.  I vividly recall him propped up in that complex, behemoth hospital bed, affirming over and over to his visitors that he just wanted to get back to the old Tom Weir.  Before May, I was the type of person who believed that one’s hospital stay was an intensely private affair, and visiting was an intrusion beyond good grace.  My husband loved those brief though exhausting visits.

If you donated to our Muscular Dystrophy Association Muscle Walk this year–thank you.  I was unable to attend the event last June myself, but Team Greater Than Gravity pulled in almost $2700 to support kids like mine and adults with muscle disease.

If you offered assistance for household chores or if you maintained our yard all spring and summer long–thank you!  Yeah, that one’s a little specific, but short of monetary remuneration, how do you thank someone for landscape maintenance?

If you dedicated your band’s performance to my husband’s survival–thank you.  Sure, a little specific on this one too.

If you encountered a very sullen, scatter-brained, ornery, or quiet me and granted me a wide berth–thank you.

Another term I tossed in the text exchange with that same friend is “functional depression.”  I’m not sure I have that, or that functional depression is even a DSM-5 diagnostic code, but here’s my working definition: keeping your shit together in public and for work, because work, and seeking little company beyond the 9-to-5.  I’ve socialized little since the accident, almost none.  At first it was because my husband needed round-the-clock support and I quite literally couldn’t leave his side, and now it’s by my own design.  I participate in the mandatory–jury duty, work, my kids’ school activities, concerts, and games–and I look and mostly behave like a human, but I am not seeking company.  And right now I’m OK with that even if you’re not.  It’s not personal.  Actually, I suppose it is personal, but it’s truly an “it’s not you, it’s me” kind of deal.  It’s me.

Sure, my brain and my Thanksgiving table resemble a work from Pollock more than one of Rockwell’s slices of Americana, but we’re still here.  Messy and frazzled, but rolling out of bed to face each day.  Some days getting up and at ’em is the greatest victory.  Happy Thanksgiving, all!  May you find yourself surrounded by good food and great people!  And if you’re like me, shying away from the spotlight for now, may you be surrounded by good food and great people who accept your laying low.

 

Top Fan

Why is everything a contest these days? Why do even the most non-competitive of life activities (enjoying music and live shows, for example) have social media rankings attached?

I received a Facebook notification yesterday.

Well, obviously. I mean, have you been paying attention here, people?

But it’s silly, right? There is no prize, no greater good for society in being so recognized by a social media platform, I assume for the number of times some algorithm has calculated I’ve included the text “Barenaked Ladies” in my comments or “liked” a status. I cracked wise about my “badge” on my FB page (because who wants a badge when a sash is still on my list of must-haves?) but really? This does not have to be a competitive sport. And if it must, I don’t think I want to play. I just want to keep enjoying my concentrated hobby in my car, all by myself, competing with no one and nothing but which song makes me feel happiest. Clearly, I’m not meant for the Major Leagues.

It’s Opening Day!! This IS major league!

I digress. But the Brewers are undefeated, you guys. It was a good day at the ballpark. It’s always a good day at the ballpark.

You know what would be a worthwhile recognition? Acknowledging people whose real life accomplishments made lives better.  To recognize acts of goodness and kindness and generosity and give those individuals gold stars or top fan badges.  So in the spirit of not-competitive do-gooding (good-doing?), I present not-awards, and since Facebook cornered the market on “badges,” from me, you get a sash.

And The Sash Goes To. . .

I’m a super top fan of these people, who, early in the process, lent their financial support to our MDA Muscle Walk team and/or volunteered to show up on walk day.  Much gratitude and love to Allison Schley, Jenna Stoll, Rhonda and Mark Weir, Laurie Stilin, Sue Doornek, and my incredible friend Sally Warkaske.  Wanna be on my Muscle Walk Top Fan list?  Join or donate to Team Greater Than Gravity by clicking here.

We Rate Dogs, a Twitter feed (@dog_rates) that rates dogs and their antics/gifts on a scale of 1-10 should get a sash for their sweet, sunshine showcase of mutts in their noble canine deeds.  Many dogs get rated 11/10 or 13/10, which I consider simply marvelous math.

Lin-Manuel Miranda (@Lin_Manuel) deserves a galaxy of gold stars for his Gmorning, Gnight Twitter pep talks and pretty much everything else he’s ever said, written, sung, or rapped.  I suck at Twitter. It would be best if I deactivated my whole Twitter account entirely, but We Rate Dogs and L-MM’s genius are enough to string me along.  I just need to shut my mouth there and stay the hell out of political threads.  The rabbit hole is deep and dangerous there, y’all.

My final sash du jour goes to a Milwaukee firefighter. Last weekend, my little guy and I were shopping, and I noticed a familiar face in the shoe section. I approached him, inquiring if was an MFD firefighter, and his response was, “Yes, and I was at your house a few weeks ago.” He was one of the crew dispatched to our home after the Curious Incident of the Ice at the Bus Stop. He asked after my son, and wished him well. I thanked him for providing calm reassurance during a distinctly not calm time. I didn’t want to bother him as he enjoyed his Saturday, so I tried to split pretty quickly, but he recognized having met me!! And that never happens–no one ever remembers me, so extra gold star.

Liking or appreciating something should not be a competitive event, but it’s not a bad idea to point out good deeds and good works.  Rewarding me for being a fan isn’t going to make me a more rabid enthusiastic singer-alonger.  But maybe someone being called out for just doing something nice might encourage more of that just something nice.  A girl can hope anyway.

I still wouldn’t mind having my own sash though.

Channeling My Inner Shirley MacLaine

Presenting a stupid-long blog post, a combination of two drafts and one new tale, all subtitled with Hamilton song titles, because if I’m focused on something, you all have to ride it out with me.  That’s how this little game is played here at Greater Than Gravity, friends.

Helpless

Our family is fortunate I carry “good” health insurance, so we don’t use the emergency medical department for an ear infection or tickle in my kids’ throats.

I know my son. When he cries out in pain, categorizing his pain as an “8,” you or I would find that equivalent measure at about 74 on a scale of 0-10.

I don’t screw around with calling 911. I’ve dialed twice before in my lifetime: once because my house was on fire–which was one hell of a rude awakening BTW; the second call was placed when I saw a man perched at the highest point of the wrong side of the Hoan Bridge as I drove home from work one afternoon.  When my son was screaming and crying in pain after having fallen on the ice, it was no joke.

Monday evening he called me from the bus stop, saying he couldn’t get on the second bus, the second of two mass transit buses he takes to and from school.  I didn’t really get it.  “Did you miss your bus?” I asked.  He replied that no, he could have caught it, but couldn’t get on.  Ohhhh-kay. . .  So my husband drove the 30 or so blocks to retrieve him, and when they arrived back home, it was clear what he meant about not being able to get on the bus.  He could not walk.

Nor could he sit or stand or do anything without howling or whimpering. His pain was unlike anything I’d seen him endure before, worse, he said, than when he broke his collarbone.  I quote: “This is the worst pain I’ve ever had in my life.”  When I say his pain thresholds are beyond the natural order of things, I say that without a hint of hyperbole.  The kid’s tolerance for pain is, well, it’s just not right.  After a few minutes of should-we-or-shouldn’t-we, we did.  I called 911. You never want to have to call 911.

The Fire Department EMTs arrived, assessed the boy, and called an ambulance for us.  Some degree of agony was alleviated by his being placed on his back, and I was glad he’d be transported in that position.  By this time, the pasta side dish had boiled over and baked onto the stovetop (good thing there were firefighters in the house!)–hey, I was a little distracted!  I collected myself, a phone charger and cord, and off we went, a crime scene of dinner components, half-cooked, half-sliced, half-assembled across the kitchen in my wake.

And there we sat.  Despite arriving via ambulance, there were no ER bays available, so they sent us back to triage, where we waited a full 1:45 to be seen.  I know he’s big, and I know he’s not a baby or toddler, but goddammit, when other parents whose kids have come and gone since we arrived are stopping to wish us well because they can see how badly he’s hurting and how upset he is???  When he’s leaning over my husband, hanging on for dear life openly crying?  My kid needs help.  Does no one see this?

He began to question the nurses as they bypassed him, calling out the names of other patients.  Why?  Why won’t you take me?  What is taking you so long?  Can you see how bad it hurts??  And parents, it would take a special degree of stoicism not to crumble to see your son’s pleas for help go ignored.

I tried not to lose my shit, because being belligerent rarely helps, but after 1:44 (and I know the time exactly, because we checked in at precisely 6:00 PM), I approached the desk again.  My child had been up and down, trying to find a comfortable position, relatively speaking of course, for nearly two hours.  When I finally channeled my inner Shirley MacLaine a la Terms of Endearment (GIVE MY DAUGHTER THE SHOT! GET MY SON A BED!), a bed magically appeared within two minutes.  *Thank you very much*  And no, I did not shout.  I was barely a whisper.

His coccyx is not broken, so say the x-rays taken while he trembled the whole time.  He was discharged at last shortly before 10:00 PM.  The ED doc (apparently it’s not ER anymore, it’s an emergency department, not an emergency room, fine) gave him one pain pill, which mercifully allowed us to get him into the car, home, and up to his bedroom, and a note to return to school Wednesday.  I’m real swear-y today, so forgive me, but are you fucking kidding me??  He cannot stand.  He cannot sit.  He cannot walk without 100% assistance.  This wasn’t a little owie to kiss and cover with a Scooby-Doo band-aid and chase with a couple ibuprofen.  All I’m saying publicly is that I’m so looking forward to my patient visit satisfaction survey.

Not only is he in tremendous pain still, but he’s also worried now about missing class and making up the work he’s missed.  Adolescence is hard enough for him, for any adolescent really, but to be laid up in the middle of things does not fit into his class schedule.  I reminded him I’d be able to email his teachers, saying as I always do, that we’ll figure it out.  We will.  His teachers have been terrific in response.  Lucky to be Huskies, as they say at RRHS.  My friend Nikki immediately sent a fruit bouquet for him, and your spirits can’t help but be lifted by a pineapple wedge emoji! 


I drafted a post last week I’m including below because I never got around to finishing it.  As you’ll read, I was sharing the immense pride I felt at my boy’s fortitude and brute strength in the face of this strength-stealing disease.  You don’t ever want your kid to have to consider this, but for mine?  It’s the lens through which he views the future.

(Maybe now is when you fetch a beverage, some type of refreshment?  I know.  It’s getting long here today, so you may need an intermission from today’s ramble.)

Dear Theodosia/My Shot

“Pride is not the word I’m looking for, there is so much more inside me now”

–Dear Theodosia, from the Hamilton Original Broadway Cast soundtrack

It’s a beautiful little serenade sung by two new fathers overwhelmed with the love they feel for their newborns.  I teared up the first time I’d heard it (as well as the second, fiftieth, six hundred twenty-third. . .).  The song perfectly captures the tenderness and awe first-time parents experience, knowing they’ll do whatever it takes to make the world safe and sound for them, if I may again steal from Lin-Manuel Miranda.

I was an athlete in high school.  I lettered in track and field all four years, and I was in cheer.  My next-door neighbor was one of my physical education teachers, yet still, I struggled in physical education classes.  Sports and leisure activities should have come more easily for me, but they did not, instead causing terrific frustration and angst.

Now it’s my big kid’s turn.  As part of his Section 504 plan, it was decided that we would meet with his physical education teacher prior to the start of the new semester, and that we did back in December.  My husband, ever the optimist to my dark cloud cover of an outlook, felt it went great, and he was confident our kid would do well.

Gym teacher:  Can he do a push-up?

Me: No

Husband: I think he could, he’ll try anyway.

Gym teacher:  Can he jog?

Me: No

Husband: He can run, not too far and not too fast, but he can try for sure.

Me: He will try anything you ask him to.  He will NEVER ask for help, and he will NEVER admit he wants a break, even when he really needs it.

Gym teacher: If it’s required, he can do some of his testing privately with me.  He is not the only student here who has a physical disability, and we do accommodate so that it won’t affect his grades.

You get the idea.  I appreciated the teacher’s time willingness to give my kid his shot. Even able-bodied kids struggle in PE, so I was sure it was gonna be harder for him than it might be for the average kid.

Last week, big kid comes home explaining how he is always tired in his English class, which immediately follows first block phy ed.  He reports that his running intervals have increased, and that tires him out.  I guess they run-walk-run-walk-run in some type of ladder system designed to increase endurance.  I did Couch-to-5K; I get the program.  I suggest to him that his 504 allows him to take a break when he needs it, that his teacher has been made aware of his physical status, and will allow him to time himself out, or rest for longer than the others if he asks.

In response he says to me that he’s just not going to let MD get the better of him, that he’s not going to let it keep him down.

I don’t even have time to turn around or look away before my eyes mist up again.  Pride is not the word I’m looking for (Thanks again, L-MM).

I feel immeasurably proud of his fortitude and attitude, but I simultaneously worry that the denial is strong in that one.  I don’t expect him to wear a medical diagnosis on his sleeve, or to lead with it in every single aspect of his life.  I do however wish for him a realistic view, not an entitled view, or a view that means he begs off and takes the easy road.  No.  I want him to understand challenge, and the value of the effort + heart + hard work = success equation.  I just don’t want him to take the path of most resistance simply because he wishes not to disclose his medical condition.  But I sure don’t get to pick.

My son now has to sign consent forms allowing ME access to his medical records.  Seriously, who thought this was a sound decision for teenagers who don’t consistently remember even to comb their hair?  My point is that I don’t walk that proverbial mile in his shoes, I don’t decide who gets to know what details about his life, and we don’t talk much about MD these days at our house.  I don’t know what he’s feeling all the time.  He won’t do what I would choose to do, or what I think I would choose to do anyway.

He is not letting muscular dystrophy define him.  To most parents, I bet that seems like a monster victory.  For many reasons, it is.  It’s a scary world our youth face.  Some days hope seems in short supply, but not for him, not last week.


Who Lives, Who Dies, Who Tells Your Story

It took a couple centuries for someone to tell Alexander Hamilton’s story.  Thank you for being here with me as I record our story with a bit more immediacy than Hamilton’s.  Today our history isn’t pretty or funny or quirky.  It’s just an I can’t sleep, beat-up mom doing her best for her kid.  When he was freaking out in the ED, I held his hands and told him he’s braver and tougher than most kids he knew, braver than even he himself imagined.  That he could endure anything.  He has.  And he will.

As both his father and I coaxed him into his PJ pants last night, he said, “So now I have an idea what it’s going to be like when I get older, when I can’t move because of muscular dystrophy.” Jesus.

This is his point of reference, and every so often we’re reminded.

Be grateful every damn day.  If you get up and out of bed, you’ve won.  Don’t ever forget it.

 

Wings

Wheels, actually.

Now that my son has mastered the County Transit System (what you would think of as a city bus) to motor to and from school, he’s taking his show on the road.  He SET AN ALARM on a Saturday morning, showered, stuffed in some breakfast, and slushed off to the first bus stop.  He’s not sure where he’s going exactly, but he’s flying solo!  His general destination is a popular retail and dining hub across town.

He began his campaign a week or so ago, and while every ounce of my motherly being was parked at “no,” he made a compelling case for “yes.”  Before I knew it, it was less my husband and me deciding whether or not we’d “let” him, and more us merely going along with his plan.  I know for a fact I never actually uttered “yes.”

He’s a teenager. He’s supposed to pursue a life outside our home, and we are supposed to let him. But we live in the city, not the idyllic ‘burbs, and much as I hate to admit it, I worry about his safety. He’s a good kid, a bit of a naif for sure, but his intentions are pure, motivated by nothing more than wanting to explore on his terms, and maybe eat too much garbage fast food at one of the many options in the area.  Just prior to his departure, I ask how much money he’s got in his wallet.

T: “$170”

Me: “Oh, hell no.”

T: “Too much?”

Me: (in my head) Sweet baby jaysus god, you are gonna get rolled by some bad dude, or some store manager is gonna see a dorky-looking teenager with a a wad of cash sporting a string backpack, assume the worst of you, you’re going to be accused of then arrested for nothing of your own doing, good thing your dad and I are home today so we can retrieve you from the police station, you’re gonna drop cash on the floor as you fumble through your wallet trying to pay for something and then someone’s gonna lie in wait for you and jump you as you exit, and you probably don’t even have my cell phone number memorized anymore, how do you have this much cash and can I borrow a few bucks? and, and, and. . .

Me: (out loud) “Yeah, too much.  Dial it back by at least $100, maybe more, m’kay?”

And off he went.

The modern marvel of Apple iPhone’s Find Friends app offers relief.  I straight-up tell him I’m stalking/not stalking him, and he’s OK with it.  Not like he has a choice in that matter, but his whereabouts aren’t unknown to me, well, his phone’s whereabouts aren’t unknown to me anyway. I watch too many crime dramas and read too many mysteries featuring serial killers, so, duh, I know any would-be assailants would toss his phone. Before long though, he texted his first update: “Apparently Uncle Bob and Auntie Anne are heading south on 76th Street, and they saw me just as I was getting on the southbound bus.”

I don’t believe winged angels hover over our shoulders, but I do believe there are forces at play around us over which we have no control.  I swear I’ve periodically seen a reflection of light where there should be neither light nor reflection when I open our side door.  In my over-active imagination, our once-elderly, now-deceased next door neighbor Irene visits in what looks to be the form of an orange-tinted aura.  Yep, sounds insane, but that blob of light is something I saw with regularity, but can’t explain. Sorry, this should be an entirely separate blog post. Ahem.

The universe has its inexplicable plan, and sometimes it places you exactly where you are meant to be.  In this case, it’s placed my brother-in-law at that intersection, and made Bob pay mind to some long-haired kid at the bus shelter on a random Saturday.  Thank you, universe.

I’d gotten updates from the music store (ooooh, that six-string bass is kickass), the sporting goods store (nothing a little Seattle Seahawks stocking cap can’t cure–Seahawks, really?), food court (Rocky Rococo’s for lunch), and of course, Kopps Frozen Custard, a local institution of deliciousness, to cap it off. It would seem his day had progressed just as he thought it should, as I’d hoped it would be for him.

That doesn’t mean I’m at ease with his newfound wings–you never don’t worry.  Even when he texted saying he boarded a bus which changed its route after he hopped on, I was cool that it was probably gonna be OK.  He’s a modern-day Magellan with the benefit of a brainful of maps Rand-McNally themselves would envy.  And an iPhone.

Me?  I spent part of my afternoon shopping for my dog’s girlfriend’s birthday party.  My husband recalled Petco welcomes your leashed pet while you shop, so he thought it’d be grand to bring Caleb along.  This is my life, you guys. We can never go back.  I did however write a glowing review of our Petco experience via the online survey they sent.  Did anyone provide excellent service?  Yes, everyone who didn’t judge me when my dog peed on the merchandise was excellent.  Pro tip: don’t buy anything kept on the bottom shelves.

Um, Hi

Being on hiatus sounds fancy, doesn’t it?  So academic.  Go on with your bad self, actin’ all fancy and on hiatus and stuff. I hadn’t felt that pull, that need to write here since I declared last month that it was time to take a break.  I’ve been a little emo, if ya know what I mean, and not the up, energetic kind of emo–the crawl under the covers, binge watch TV, and tell anyone who asks you’re just fine, just happy to sleep late kind.  Since I stepped away from the blog one month back, I’ve been bunny-hopping around the yawn of the rabbit hole.

I finally nailed my six-word memoir, writing tells me how I feel, then stopped writing.  Smart.  I stopped at what I felt was a pivotal moment: my kid was entitled to a certain expectation of privacy.  He is.  But I’m  also entitled, entitled to a certain expectation of not losing my mind.

While on break, I read a ton, discovered podcasts, celebrated nailing every word to “My Shot” from Hamilton (Lin-Manuel Miranda, you are a genius), and I wrote a lot of stuff with zero intent of hitting publish.  The writing wasn’t good, nor did it check the compartmentalizing brain box for “writing it down-getting it out.”  Blah most succinctly captures the fun I’ve been to be around.

But if I had been blogging this past month, I’d have chatted about my new television BFF, Midge Maisel.  I am in love with The Marvelous Mrs. Maisel, starring Rachel Brosnahan as a ’50s-era housewife, living the Upper West Side life.  Midge’s husband was a schmuck whose indiscretion led to her on-mic rant on an underground club stage which led to her double life as a comedienne.  Her timing is surgically precise, off-the-cuff comic genius at its finest during a time women were strictly barred from the boys’ club.  She’ll never win a mother of the year contest, but MAN, do ya root for her!  I’d D.I.E. to play dress-up in her wardrobe, just once.  Those dresses!  The hats!!

If I had overshared my days and nights with you here as has been my pattern, I’d have shared with you this grocery store telephone exchange with my oh-so-attentive husband. 

I’d have told you my Yellowstone National Park otter story.  You have to read this in “John Cleese as hushed/whispery narrator of a nature documentary” tone until the end, where my tone totally prevails:  So they’re highlighting winter animals in the park, then of course, snow melts, the seasons change, and the river otters are seen frolicking in the spring mountain runoff.  We see that the male otter is looking to git a little somethin’ somethin’ from his gal pal because it’s his spring awakening, though the female’s a little meh about his advances. Enter John Cleese:  The male ottah (because he’s British)  attempts to woo the female ottah, but the female seems a bit distracted.  Me: Yeah, you know why she’s distracted?  Because she’s thinkin’ she’s gotta get groceries, make dinner, clean the house, do the laundry. . .  My husband:  Silently stares at me for a second, then admits it was pretty funny.  He didn’t admit I was accurate, but I’m sure it was implied anyway and I’ll take the victory.  No Mrs. Maisel myself, but my timing here?  Impeccable.

I’d have told you about how my freshman (and about 1/4 of his classmates) positively crushed their first semester grades.  There’s about a 98-way tie for valedictorian so far, and that is not typical Wendy exaggeration, but the incredible effort of these hard-working, high-achieving teens.  The child comes home, tends to his schoolwork promptly and without prodding.  If he coasted the rest of his years (and he had sure as heck better NOT), I’d still be knocked out by grade nine, semester one.

I’d have made mention of a little professional revelation I had that suggested to me it might be time to hang it up. When you’re ineffective, be it by circumstances external or within, you’re ineffective. Even I am tired of hearing my presentations and opinions, so too I would guess are the bulk of my colleagues. The beauty (beauty?) lies in knowing it before having to be told. The “quit before they fire me” school of thought. No, I’m not quitting or likely to be terminated, but I am evaluating my state of affairs anyway.

I’d have told you about my “little” kid’s first basketball game, which, in a real nail-biter, they took 27-1.  And yeah, everyone cheered for the kid who sunk that free throw.  My child is the one with arms like a spider monkey’s.

I’d have written about having seen The Book of Mormon, and the especially offended young woman who steamed through the lobby shouting “Sacrilege!  It was sacrilege!”  Ummm. . .  you bought the ticket with no clue that the dudes who created South Park wrote the libretto?  Were you expecting a fun little evening actually learning about the missionary work of the Church of Jesus Christ of Latter Day Saints?  Really???  I have an absolutely profane sense of humor, and even I blushed at some of the language and imagery.  Oh sure, I laughed until my face hurt because it’s wrong in all the right ways/right in all the wrong ways (and frankly a little terrifying in some of the truths which underlie the basis for the musical).  A super badass friend of mine is an ex-Mormon, and I respect and admire her all the more for her strength in having left it, but not Utah.  That’s her story to tell though, not mine. 

I’d have written a new mystery á la Nancy Drew or The Hardy Boys with the working title The Mysterious Case of the Broken Staircase Spindle. It wasn’t me and it wasn’t my husband, and the dog doesn’t go downstairs. . . so, yeah, SO WEIRD that nobody broke it.

I’d have written about the kick of having discovered Snapchat’s ridiculous filters. Because while I LOVE my hair purple and my eyes blue, there are limits to the type of look a 50-something professional woman should want to cultivate in real life.  I don’t actually share snaps (am I saying that correctly, kids?), so if I die and someone goes through my phone’s saved photo roll, I’ll be judged for eternity as someone who thinks a little too highly of her self-portraits.  

It’s our family’s four-year MD anniversary, or crap-iversary if you’re my friend Cindy, who reaches out every year at this time with some wise or comforting words.  Or cake.  Four years. 

January 21, 201–still the day for me that began after. 

Four years of wondering if his outcome would’ve been different had we waited even one millisecond longer to have a baby.  Four years of tears striking at the most unexpected (and those you can totally predict) times.  Four years of gearing up and freaking straight the hell out at the MDA Muscle Walk.  Four years of meetings with school administrators, counselors, occupational therapists, physical therapists, and teachers.  Four years of friends and strangers putting their best, kindest, most generous sides forward.  Four years of reluctantly raising funds for my kid and others with muscular dystrophy, to advance the science as well as social opportunities for kids with disabilities.  Four years of dreams dashed, then reconfigured and revised. 

Four years of writing these random musings.  I need this place to deposit the bad stuff in my head to lighten the load, to be me. Writing tells me how I feel. I want to feel more up–maybe I can write myself a happy ending.

 

You May Take The Floor

When you’re the problem solver for a good lot of people, those individuals expect performance.  The baseline expectation is that you’ll deliver, and historically, pretty much every time, I’ve delivered.  I suffer no delusions of self-importance; don’t misunderstand me–I know I’m not indispensable.  But when you ask me a question, I respond promptly.  When you ask me to get or bring you a thing, I tend to deliver in a timely manner, said item held out for your inspection.

Right now though, I’m not up to fixing mine or anyone else’s problems.  I want to marinate in an isolation ward. A mostly cheery, albeit smartass and bitingly sarcastic nature, is my norm though, right?

Here’s what I would like to share: success.  My son, my boy with this crap muscle disease, who’s becoming more young man than boy by the minute, help me!, competed in a team event.  He hasn’t engaged in a physical contest of any sort since around first grade probably, I honestly don’t even remember anymore.  For the past several months, he and his “teammates” under the tutelage of their band director and a cool dude experienced percussionist to assist-coach, have been rehearsing their behinds off for the district drumline competition.

Drumline is not for the faint of heart, yo, and the pageantry and air of competition made for a memorable, oh heck–historical, Saturday.  The two perennial faves did take first and second, but to see the excitement on our kids’ faces when they learned they made the finals in third place was more than I could have dreamed.  They scored the first music competition trophy in school history, and I couldn’t be more pleased for and proud of them.

They worked for months!  After school rehearsals a couple nights per week, and 4-hour mini-camps on off days and Saturdays, to learn cadences and choreography, and then rehearse their pieces while moving their parts.  My kid was beyond exhausted after rehearsals–trashed–but he persevered.  After Saturday’s first round of performances, scores were tallied, and the four finalists were named.  It was a moment.  As I often do, I marked this moment with tears.  Poor Cat!  My friend whose children attend two schools–older daughter in the top team and son, my kid’s close friend, had to deal with me crying in relief, disbelief, and joy.  Never once, since that horrible January day, if you’d asked, would I have imagined my kid participating in a physical contest such as this.  You’re thinking drumline is musical, and I must be confused, but surely it’s physical.  And it’s magic.

Drumline captain, are you ready?  You may take the floor.

You don’t have to, but you can watch their first round performance by clicking here. I’ll watch another time or two to remind myself that even when I want to fly solo, good things happen when you’ve got a wingman or twenty.

Stay tuned, friends–I’ll be back.