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.

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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.

Getting Picked Last For The Zombie Apocalypse Team

If toilet paper and fresh meat supplies are any indicator, society is near end of days.  I’ve probably said aloud “armageddon,” “eerily quiet,” and “apocalypse” more during the last week than in my lifetime previous, and I studied The Walking Dead like it was my job, and also I talk a real lot. 

I’m not in health care, nor am I anyone’s news source, so I’m not here to peddle “How to Survive the Pandemic” advice.  There is nothing cute or funny about global pandemic.  The indescribable burden on health care providers and grocery store personnel alone leaves me exhausted even to think about their experiences.  But if I were giving advice?  I’d say simply this: be nicer.  I’ve tried to be extra polite and extra kind to the many, many providers’ offices who’ve called to cancel our family’s many, many medical/dental/surgical/therapeutic appointments.  I’ve gone out of my way, and I don’t mean just ’cause of social distancing, to be kind to anyone I’ve encountered publicly.  Which, I guess the sum total of my public goings-on have occurred at the grocery store, so I’ve let harried people line up in front of me or grab that slab of bacon.  It’s cool.  I’ve not completely lost my shit when my brand new car had to be returned to the dealership for service. TWICE.  ‘Cause what can you do?  

Beyond acting like a decent human, I don’t know exactly what we can do, but I do have some thoughts on what you could maybe not do.  Please cease and desist the frenzied hoarding.  The opportunistic MLMers trying to sell me and the world their ultra-hygienic, specially-formulated soaps and household cleaning products or recruit people who, because of this virus, are now unexpectedly out of work?  Stop it.  Please fucking wash your hands as a matter of routine anyway.  Get and stay informed by members of the medical and scientific communities.  Read that book you’ve had on your nightstand since forever.  Do that!

In our home, we have enough, but we surely don’t have the bunker of supplies that the bulk of nightly news-watching humanity apparently believes will be necessary to survive these 3-4 weeks (or 8-20 weeks, depending on which news source you follow) of self-quarantine. 

I hate this the most, that my kids are worried.  Much as they might grouse about homework, they’re missing school.  They’re missing their normal.  They want answers I can’t provide.  I’m honest with them, honest as I can be with the knowledge I’ve got, but I don’t want them to live in fear.  They have endured enough, thank you very much.

I carry no real skills into the zombie apocalypse.  I’ve already been kicked off someone’s team, or to be more accurate, have not been selected.  Playground rules, you guys, I get it.  I got a vague, conditional agreement from someone to sorta watch my back, but who knows. . .  I bring so little to the table.  My visual-motor integration is a known factor of zero; it’s a hilarity to those who know me.  I am not what the kids these days are calling a “maker.”  I can’t sew.  I’d suck at designing a fortress (or a tree house, or a lean-to. or a pile of sticks. . .).  I can’t build a fire.  I have no experience with firearms.  There’s just not much use here in dystopia for someone who recalls the lyrics to every song she’s ever heard or has quick smart-ass timing. 

But I’m physically strong.  To look at me, you might not believe it, but for someone my age I’m scrappier than you’d think, even if I do plaster on a full face of makeup just to sit inside my house day after day.  I joke that I don’t, but I do possess a strong will.  Sure, I cave on lots of things, a fact to which certain of you can attest 100%, but when it really counts, I can be counted on.  If this last year didn’t fucking break me, neither will this damn virus.  I’m a really good and loyal friend.  I can make you laugh and remind you that I love you and make you understand that even when you’re down, you matter so much, and I’ll hammer at you about how much we need you around, how my world is a much more complete place with you in it–even if it is at the prescribed social distance of six feet.  I can cook well and bake decently, so I’ll show you I love you by feeding you–it’s one of the ways you’ll know you’re on MY zombie team.  I’m nice just because and I know a little about a lot.  I’ll listen to your secrets and I’ll keep them.  We’ll need that after the armageddon, don’t you think?

Along a different thread in my life, and after I’d defined myself by the roles I play for others at home and at work, a friend responded with yeah?  But who are you for YOU?  I think my initial response was, “Well, shit,” but maybe that paragraph above is today’s answer.  I do what I can.

Do what you can. Broadway stars have given kids whose high school musicals were canceled the opportunity for them to be heard.  Can you imagine some high schooler getting Twitter love from the likes of Lin-Manuel Miranda?  Last evening, Ed Robertson, my favorite singer in all the world (we know, Wendy. . .), went live on Instagram.  Like the rest of the world, he’s holed up with his family doing the social distancing thing, but he took an hour to share music with his fans. How this man can play guitar and sing lyrics while reading everyone’s comments in the feed demonstrates a level of multi-tasking simply beyond my comprehension.  He used what he had to raise money for responders to this hideous virus, and made fans happy, if just for an hour.  My friend Nikki said she laughed really hard at something he’d said, and realized how long it had been since she laughed.  That was one sobering statement to read, because Nikki’s hilarious.  Just ask her!  

We are facing serious stuff, you guys.  Allow for the seriousness and heed it, but also look for the light.  Be safe, and be as good as it is in your nature to be.  Better.  xoxo

 

 

Turbo Tax

At last, a tax refund. And all it took was a $40,000 drop in income to finally, finally get a tax refund.

It’s (not) funny how things in our post-accident life reveal themselves.  By most barometers, 2019 was not especially kind to our family.  The Accident was the star of the shit show obviously.  First and foremost, my husband didn’t die, so I’m reluctant to complain about the accident.  Early on, one of the rehabilitation physicians said to Tom, and it was so accurate and pointed that I engraved it into my memory: “You’re lucky.  I’m not saying you’re lucky your buddy backed over you with that truck, but that you emerged from it with as much intact as you have is extremely lucky.”  Early on, I said that any complaint I would lodge flies in the face of the “he didn’t die” lottery ticket we cashed in.

So I’ve kept complaints to myself  OK, kept them to my closest friends and my poor coworkers, cursed by their proximity to me, but even then I censor and heavily edit myself.  But there are legit complaints I could file to the deaf ears of no one in particular.  You wouldn’t want to trade places with me, right?  I mean really.

What’s less obvious are the latent effects of the accident–slides and differences you couldn’t possibly have conjured up when your days and nights were spent in the ICU hoping against hope that your husband would simply just stay alive.  Slides and differences like your kids’ tanking grades and sports performance, spending inordinate parcels of time sorting through insurance documentation and waiting on return calls I know aren’t coming, becoming a hermit first by necessity and then by choice, having to delay jury duty only to later get seated on a jury for a homicide case, realizing you never ever, ever stop worrying anymore.

Preparing our taxes this year provided a sobering butt-kicking.  Taxes always suck.  No way around that, and we always end up paying in, waiting til April 15 to file and separate our cash from our savings account.  Super suck.  Last January, I began chunking out an extra amount in withholding so this January’s hit wouldn’t feel quite so lethal.  What a non-issue that ended up being!  A side-by-side analysis compared our taxable income between 2018 and 2019 and revealed a $40,000 discrepancy.  Forty.  Thousand.  Dollars.  Maybe that’s not substantial to everyone, but it is to us.  I actually laughed out loud when that screen came up on Turbo Tax, because what else could I do?  How the hell did we manage??  Between the almost eight days my employer docked me (still real pissy about that, yep) and several months’ worth of Tom’s payroll “vacay,” along with there no longer being overtime pay for him, the numbers told quite a story.

But we did manage.  He did receive injury pay, and we had legions of people who fed and funded us over the summer.  And honestly, still?  When I think about the kindness and generosity of our people, I cry tears of gratitude.  You really do wish you had the people we have in our lives, you guys. We didn’t get through this alone. Aren’t getting through this (present tense) alone. The bottom-line discrepancy from one year to the next wasn’t the full $40K, but it was, my friends, quite a lot of bank for a couple public employees.

The big reveal wasn’t for me the year’s diminished income and it wasn’t the massive tax refund we are mercifully getting!  I anticipated a substantial change in our tax situation, all things considered.  The lasting effects of his full-body throttle mean he won’t be returning to the same job classification.  He liked his job, liked the guys he spent his days with.  And it’s garbage that his job’s been sorta taken from him.  It’s garbage that my kids struggled and have had to watch me meltdown, repeatedly and rather unprettily.  Our family’s income will be affected for my husband’s employable future–the no-overtime pay thing is gonna continue forever and that’s garbage too.

But because of the experience, I’ve also been given an opportunity, so not everything is garbage.  One of Tom’s ICU nurses is studying ICU delirium, and has asked for my perspective.  She noticed me writing in a notebook (writing tells me how I feel) while I lived bedside in the ICU, and we’ve kept in touch.  I hope that what happened to my husband would never happen to another single human being, but bad stuff doesn’t quit, and we don’t own all the sadness.  Maybe something we picked up in this ordeal can help another patient in the future, and that is exactly the opposite of garbage.

My Life In Texts, Vol. 2.0

It’s been a while here, friends.  I’m in the midst of an epic writer’s block with a big ol’ order of zero motivation on the side.  Any subject I’d ramble on about these days I’ve done to death already.  I recognize in my conversations with friends and coworkers how I’ve become very one-note.  Accident blah-blah-blah, work blah-blah-blah, muscular dystrophy blah-blah-blah.  Blah.  Maybe it’s just this hideously dreary time of year?  Winter can barely even be bothered to rear its ugly head in any assertive fashion–a dusting of snow here and there, temps in the 30s and 40s.  Even Mother Nature is all meh.

Being one-note is one thing, and being aware of it adds a level of well, shit.   I want to write and write well, but manufacturing the time to accomplish that is no small feat as we settle into the wonder years.  We are in the process of buying a new car, and can’t even get to the dealership because of the kids’ nightly after-school activities.  No lie, one or more family members has something going each and every night for two straight weeks.  You really are left to wonder just where the hell the time goes!  I love, love, love that the boys have music and sports and am fully committed to their rehearsals and practices–it’s what good parents do, right?  But the transportation hither and yon cuts into my connected think time.  And, keepin’ it real?  The acme of my “think time” has long passed.

In the absence of substance, I’ll give ya an updated installment of My Life In Texts, where I at least periodically hit a high note, and when I miss, my friends positively crush it!  You can find the first version of a text-filled post by clicking here.

 

Hoping to avoid human interaction while walking the dog in the early AM and running into my stunning neighbor, Kathie.

When someone does someone else’s work for her and that person trash-talks it, commenting that “Well, you tried.” Yeah, well YOU DIDN’T!!

I think we can all agree that whatever my friend thought was more important couldn’t possibly be.

Totally eavesdrop-worthy.  I should have brought popcorn. I caught the whole tale, and while it left me with no cliffhanger, there was just a bit of a twist at the ending.

When my bro and sis-in-law visited last fall, we enjoyed some killer brunch at Toast, whose mugs are my perfect size.  My brother seems to believe I lead a life of petty restaurant theft.

It really is.

Your drunk poet.  Get your asses to Cincinnati or to your grocers’ freezer for Graeters Ice Cream, you guys.  I am not overstating the magnificence of their chocolate ganache roll-ups.

I’m not the cheeriest gal in the office, but there was that one day when I was the fourth cheeriest instead of fifth.  #squadgoals

Antonio Brown getting cut by the Patriots early last season.  My bro called the signing AND the release.

Don’t text and drive, kids.  And hell yeah, I’ve danced on tables

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When middle schoolers make exceptionally uninformed decisions.

I mean, they have a pool, so. . .

I can’t even state with any degree of confidence that I make a ton of valuable contributions at the opening bell for that matter anymore.

I didn’t say all the texts were fun.  As I read up some of my text threads, I was reminded of how much has changed–from nightmarish Emergency Medicine horror show to rehabilitation darling of Froedtert and the Medical College of Wisconsin.

Stick with brown, Wendy.

But a distant memory. . .

I included this for Sally’s response after I crashed and burned in spectacular fashion, spraining my ankle at Target Field.  Top 5 text messages of all time.

Cheers to our lord and savior, Lin-Manuel Miranda (thank Sally for that one too).  Hamilton.  Hamilton!  It is so damn good.

My coworkers visited me at the hospital while Tom was in neurosurgery.  I’d “slept” at the hospital the night before at his request, so wasn’t at my fresh, daisies and rainbows-scented best.  Not my finest hour.

It was bizarre how I sought balance with the most gruesome details of my husband’s many medical diagnoses and intensive care.

Not super coherent and I talk too much.  Probably I should have that printed on a tee shirt.

Colorblind

Sometimes I almost forget my baby is colorblind.  Being colorblind does not mean that he sees the world in black and white, a common misconception, but his world looks much different than the world looks to most people.

When he was very small, we used to play a game called Cariboo.  Cariboo has since become the hottest of speech pathology commodities, and the two games I’ve got in our basement will someday fund my kids’ college tuition.  Riiiiiiiiight.  Like speech-pathologists have this fancy, lucrative career where money is no object.  Most years, I have to fully fund my stash of materials and supplies, so nobody in the speech therapy game is getting rich enough to pay what I want for my coveted Cariboo games.  Anyway. . .  Cariboo is an early education game targeting preacadmic skills such as letter naming, shape recognition and naming, color identification and the like. My kid always struggled with the green and red cards, so that was our first clue.

I remember observing a game of I Spy he played in speech therapy.  I didn’t get to many of those preschool sessions because I work full time, so was I able to take him to the university clinic just once.  I observed him with his therapist, Ms. Christie, whom he LOVED, and who is now my colleague, as it happens.  Ms. Christie had cards hidden around the room, and E was supposed to employ fluency-enhancing speech behaviors in the construct of “I spy something that is red” or “I spy something that you can throw” for example.  Everything he spied was purple or brown.  Ms. Christie did not have cards with any brown or purple items on them.

OK, maybe this sweet combo should have been a clue, but he was three and we exploring the idea of letting our kids make their own choices!

We took him for a vision exam when he was in kindergarten, not strictly due to the suspected colorblindness, but we were picking up on soft signs around the house and then a school vision screening strongly suggested we should.  Shortly thereafter, he was fitted with his first pair of glasses, and I cried real tears when he, for the first time, understood that trees had individual leaves and not a green blob on their branches.  Did you know a bunch of grapes is comprised of literally a bunch of grapes?  Of course you did, but he didn’t.  He saw a blob.

Colorblindness isn’t terrifically handicapping, but he does experience periodic frustration, to be sure.  We tell his teachers about it every fall–if a test has a “Measure the green line” or “What is the perimeter of the red trapezoid?” he’s at a distinct disadvantage, so it matters.  Otherwise though, he’s learned what I call the Crayola 8.  He has learned by association that classic red is red and classic purple is purple for example, but shades of anything in between are a wild guess.  “Mom, where’s my grey shirt?” could return something that’s neon, high-vis yellow, aqua, forest green, or if we’re lucky, actually grey.

This shot of the bench was the only photo I took today. My kid is the giant on the end, and next to him is his best friend. They’ve been best friends since their first day of 4-year-old kindergarten, and his BFF today was finally able to get in the game after a nasty ankle fracture the first football game of the year. This boy, who I love right along with my own, has shown up for every single practice and game since getting hurt. Knowing he can’t play, but showing up for his teammates says to me everything you need to know about his character. Every one of us should be so lucky as to have a friend (and a friend’s mom) like my son has.

At his basketball game this morning, colorblindness was handicapping.

His team’s jerseys are black, and the opponents were wearing a crimson shade, burgundy, maroon, whatever you prefer.  He approached me at halftime, which you JUST DON’T DO, his face completely serious.  “Mom, I’m having a hard time today.  I can’t tell whose jerseys are whose, they all look alike to me.”  It was the most unexpected thing to hear, and it’s not like I forget he can’t see color accurately, but yeah, you kinda forget until it’s in your face.  It hadn’t occurred to me that his coach would need to know, and there you have it, another lesson learned.  He got back in the game, but didn’t get a ton of playing time in the second half.  That’s OK though–he might not have anyway.  The good guys and girls came home with the W in a game delayed thirty minutes by snow.  Can’t play without a ref or official scorekeeper, you know.

Legally, my boy cannot be an electrician like his dad, he can’t be a commercial driver or a pilot, and I guess it’s some bizarre relief to know he’ll never be a called to defuse a bomb.  And though it’s not profoundly life-altering, I was reminded that colorblindness is a little life-altering.

I see those widely shared videos of boys and men, for colorblindness occurs primarily in males, who are gifted with those colorblind codebreaker glasses, and feel like the world’s shittiest parent.  Universally, when these guys see how the world truly appears in its glorious rainbow of color, they shed serious tears, like ugly cry tears.  They’re shocked.  They appear stunned to the point of disbelief.  I wonder if they wear their glasses constantly.  I wonder if they feel cheated when they’re removed.   I wonder if they’ll ever develop contact lenses with this technology.  I wonder how much they cost. . .

Beep Beep

And then one day, that baby they handed you sixteen-some years ago starts driver’s ed.

When families add a driver, parents kid about skyrocketing insurance rates and their utter lack of faith in their teen’s ability to drive responsibly or safely, sure.  Most parents don’t have to consult with their teen’s neurologist about whether their kid needs to identify himself as a person with a disability when it comes to driving.  It’s been quite some time since I’ve written about muscular dystrophy.  My kid’s recent appointment did not suggest decline and his care team felt that he could commence driving without incident.  Yay for 90% of me (100% for him) and holy crap, my kid’s learning to drive for the other 10%.

I once believed that I’d never live another moment that wasn’t consumed by my grief or sadness over my kid’s diagnosis.  Funny how managing another massive health status change (ya know, getting run over by a truck as an example) kicked MD from my front and center.  It’s not that I’ve forgotten my ol’ pal muscular dystrophy–it’s lurking always, lying in wait just around the corner ready to cuff me upside the head.  MD hangs back sidestage, while I wonder now how I’ll ever live another moment not consumed by the accident and its considerable aftermath.

At our most recent speech pathology department meeting, a guest presenter spoke to us about flexibility and resiliency. The professional development section was designed not for me personally as its title might suggest, but rather to help speech-language pathologists more effectively serve neurodiverse students.  If that’s a new word for you, neurodiverse has come to include people with diagnoses similar to what many people consider autism spectrum disorders and/or individuals with significant emotional or behavior disabilities.  The presentation was meant to better my practice, but me being me, I made some of it personal.

The older I get, the less flexible I want to have to be. My job however is one that requires me to at times drop everything and run across town to cover a last minute meeting or evaluate a student and write a meaningful education plan with two days’ lead time. I used to mind that less than I do now.  I do it of course, not only because it’s my job, but also because I’m committed to my career and maintaining what I’d like to believe is a solid reputation. I enjoy predictability more than I’d thought. Hmm.

The dictionary tells me that a resilient person is one who is able to withstand or recover quickly from difficult conditions, see also “an ability to recover from or adjust easily to misfortune or change.”  I was feeling all, “Damn, if I’ve learned nothing else from 2019 it’s that I’m one badass, resilient woman.” Then I read more carefully, noting those sticky, tricky adverbs quickly and easily.

My employer has finally terminated its blood-letting.  After twenty weeks, I’ve “paid back” the couple thousand dollars they withheld from me when I (fucking naively) applied for FMLA instead of calling in sick the days after Tom’s accident.  Still, I have over 1500 sick hours accrued, an account balance that’ll grow or hold steady until I die retire. Still, not one person, no one from any department from payroll to employee relations, has had the common fucking decency to contact me directly about it.  I bet if I worked at Apple or Dunder Mifflin or McDonald’s, someone would have at least had the decency and integrity to call me with a howdy heads-up.  I thought I’d be done feeling bitter once I received a regular paycheck, but you know what?  Still fucking bitter.  You can tell because I used the f-word three times in this one paragraph.  Bitter, not resilient.

Super scattershot post, but there is a theme.  Well, in my head anyway there is a central thread, and it’s maybe this:  Most of us are fortunate enough that we don’t have to be taught flexibility and resilience in an explicit manner, so what, that makes us lucky?  All of us lucky ones though, some of the time, have that flexibility and resilience tested.

Navigating our world compels us to be flexible.  The world forces us to build resiliency, because the alternative to carrying on in the face of adversity is surrender.  Surrender though feels intoxicating, like a warm, lavender-scented bubble bath from which you never want even your pinky toe to emerge.  But you can’t surrender.  People need you, and even if you don’t feel like being needed, you don’t get to pick, so surrender isn’t an option.  Then your kid starts to drive, which for the average parent is unnerving.  For the parent of a kid with a disability, it’s a bit more than that.

And there you are: grinding forward, a fake-it-til-you-make-it expression fixed on your face. Flexibility and resilience. I got ’em.

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The drummer from one of my favorite bands passed away last week.  Neil Peart, Rush’s wizard of percussion and lyrics, succumbed to brain cancer.  Rush was my first favorite Canadian band.  Their music was my constant companion during middle and high school, and more than just occasionally played here still.  My big kid became a fan too, inspired to play bass by their music, spinning my old vinyl records on his school radio station.  I was stunned by the news, and days later, still feel a pang.  I never met the man, but I will miss him. His music has been important to me.  Nothing whatsoever to do with the “theme” of this post, and I use the word “theme” loosely, but writing tells me how I feel, and I miss Neil.

How Lovely Are Thy Branches

I was a hardcore live Christmas tree person.  And by “live” Christmas tree, of course I literally mean dead tree, because no Frasier Fir takes root in anyone’s living room.  Even as a broke-ass college student, I scrounged up enough to buy a real live (dead) pine tree for my friends and me to adorn for the holidays.  It’s a shame social media had yet to be invented in my youth, because our handcrafted Bon Jovi Christmas ornaments, ripped from the pages of Metal Edge magazine, made for some real Kodak moments.  Oh, Dawnster, how I love you and loved your beat-to-hell silver Corolla, tree roped to the roof.

This live Christmas tree thing was instilled at birth.  For reasons I don’t fully grasp even now, it was a family imperative that my mom, my dad, my brother and me, as a collective, shopped for and agreed upon the one tree which would become THE family tree.  We’d traipse from this lot to that one across town, in search of the perfect pine, and we all HAD TO AGREE.  Any dissent meant the quest continued, and you’d think that once I became a horrible teenager, mortified even to be seen with my family in public, I’d have OK’ed the first one that even kinda rang my jingle bells.  False.  We’d bitch and roll our eyes the entire time, my brother and me, but refused to budge if a tree revealed the tiniest of bare spots or a wonky trunk.  You had to give my parents credit for their optimism and/or Clark Griswold-like commitment to a good old-fashioned family Christmas.  Wait a minute. . .  Maybe they just wanted to torture us, and making my brother and me suffer provided their particular brand of wry Christmas cheer.  In any event, pine trees cut from a forest were part of our Christmas tradition.

Until they weren’t.

I honestly can’t recall in which year it went down exactly that my parents threw in the towel, though my memory suggests I was in college, or perhaps even as late as graduate school after I’d moved out.  I fuzzily remember though, not shopping for the family tree one year, then coming to the realization that the tree in their living room was an imposter!!!  *gasp*  My mom and dad?  Bought a Christmas tree in a box?? A box!

This new instrument of trickery was identified by the retailer as Tree #42, and so “42” took on a life of its own.  42 had songs sung in homage: “O 42, O 42, how lovely are thy branches.” 42 was put on display the day after Thanksgiving.  42 was known as 42–not as “our Christmas tree” or even “the tree,” just 42.  As in, “Hey, we put the lights on ol’ 42.” and “Wow 42, is broader than we expected, and takes up a huge chunk of living room.”  I never said we weren’t weird.

Since our sons were babies, we’ve purchased our family tree at the same family lot, Sanfilippo’s on 27th Street.  Somehow, except for last year, it worked out that the same salesman/tree lot attendant worked with us, and he remembered us, which made for happy memories for the boys.  One year when they were still tiny, he threw the football around with them in the tree lot, so naturally that became what they did when shopping for our tree each year since.  He always cut us a fair deal, to a point that Tom overpaid him last year, giving him more than he’d asked for.  Side note: my husband was clearly not the money manager in our house, even before the head injury.

2019 hasn’t been what one might term “festive” for my family and me.  In light of our advancing ages and Tom’s accident this year, we wanted to simplify things a bit.  Around Thanksgiving, I began dropping hints that maybe we’d get an artificial tree this year, and kids, what do you think?  I’ll tell you what they thought: they did NOT approve.  Now mind you, they always went along for the ride–complaining significantly less than my brother and I did, my good boys–but that marked the end of any actual helping with the Christmas tree activities.  They’d hang maybe one or two ornaments before losing interest, and I’d be left hanging the remainder.  Shopping at that tree lot to purchase their live/dead Christmas tree had become their tradition.

Until it wasn’t.

I give you the newest member of our family, Sierra Pine 84.

Welcome, 84.  I guess there’s some nice mathematical symmetry between 42 of my Christmas past and 84 of my present, right?  84 is nowhere near as fragrant as the real deal though, I’m afraid.  I couldn’t even look at the sales clerk as I completed the purchase because I was afraid I’d cry.  What exactly did I feel I was being disloyal to?  I felt traitorous to some tree out there, who’d otherwise have given its life to be loved in our home.  Traitorous to myself, my upholding of our tradition.  I felt that I’d let down our children, depriving them of their tradition in a year that forced us to abandon every tradition we’d ever known already.  I felt like I was letting my maybe-depression win by taking the easy way out and not getting a real tree.  When the stock kid loaded the box into the back of our SUV instead of roping it to the roof, OK, I admit that I shed a tear.  I did.

I spent waaaaaaaay more hours than I’d expected to, shaping 84’s branches into life-like perfection (an oxymoron, to be sure), and we didn’t even buy a pre-lit tree, so the prep took more time and effort than I’d anticipated.  Somehow that made me feel better.  Not having to get on my belly to water it twice daily was a little bonus too.  But the best part, the part that allowed me to release any doubt or guilt occurred as I trimmed the tree.

Ours is not a themed tree–we string multi-colored lights, we don’t display only certain styles of ornaments or wrap our tree in festive ribbon. Our tree tells the story of our lives–our family history hung on wire branches.  I’m terrible at decorating, but I’m really good at hanging ornaments.

Unpacking those storage containers, idle since January, opens a part of my sentimental heart every year.  Since our kids were babies, I’ve purchased them an ornament for St. Nick.  I swiped the idea from my sister-in-law Anne, who suggested it to me when mine were babies.  When they grow into their own homes and trees, they’ll have a jump start on their own set of ornaments.

As I admire our ornament collection, I’m reminded of the first vacation Tom and I took early on in our young love lives.  We bought the ugliest, tackiest ornament we could find in the ugliest, tackiest tourist gift shop, and that trend has continued (PS–Niagara Falls provided the worst worst ornament, followed closely by Albuquerque).  These tacky ornaments help us relive our travels.  I’m reminded of Deandre, a paraprofessional who I haven’t seen since we worked together in the mid-late ’90s, but who gave me a dove ornament I treasure.  I’m reminded of my grandma, who after retirement joined a senior center, crafting ornaments on her way through her 70s.  I’m reminded of the kids’ “first” ornaments, and the literary and TV characters they so loved during their little kid days.  I am in love with their kindergarten crafts, gingerbread men speckled with glitter and gumdrops and snowflakes or Santa hats with their cherubic little faces cut and pasted on.  My friend Ann, artist and art teacher extraordinaire, gifts us a handmade ornament every year, one more exquisite than the next.  I’m reminded that even when one of my students lives in devastating poverty, I meant enough to him that he taped up a broken Christmas ornament so he had something to give me.

My 2019 additions are the pink and yellow Chuck Taylor shoe ornaments to match the much-loved pink and yellow Chuck Taylor shoes of my own.

Trimming 84, I’m reminded of how much love and how many wonderful people are in my life.  On any given day, in the back of my mind I know this, but the reminder doesn’t hurt.  Our artificial tree created the opportunity to reflect in a genuine way.  In a year I’m more than ready to kiss goodbye, I really needed this.

Merry Christmas to all, and to all a good night.

Figurative Language

Kids with language disorders often experience difficulty interpreting figurative language forms.  I’ve been a speech-language pathologist working for many years with students whose language comprehension and expression skills are compromised.  Say to some kids, “It’s raining cats and dogs!” and they’ll look to the sky expecting to be pelted with fluffy quadrupeds.  Ask if they have butterflies in their tummies, and they’ll assure you most definitely that they did NOT eat a caterpillar.  Sadly, kids are entering schools with less and less language and more limited language competency (IN THE NAME OF ALL THAT IS DECENT AND PURE, PUT DOWN THE SCREENS and TALK TO YOUR CHILD!). My job security is a sad sign of the times.

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For those of you looking for an upbeat, cute kids or holiday kind of story: this would be where you hit the back button web browser and split. For my more of the glutton-for-punishment type readers, please continue at your own risk.

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Adults use figurative language all the time.  “Those maple bacon pancakes are the shit!” does not mean what the words literally indicate, thank stars!  Likewise, “I’m going to lose my shit” doesn’t indicate bowel incontinence. but rather means probably what you, a capable reader, thinks it means.  And I am microseconds from figuratively losing my shit on a large and public scale.

I’m competent with language.  I can string together a clever sentence or two from time to time, and I well comprehend figurative language.  When I was LITERALLY at the most vulnerable moment in my life as a wife and mother, institutions that could have made things easier, didn’t.  Where those institutions and individuals could have helped me (and millions others in similar shoes) navigate those treacherous waters, it was easier to let me float out, lost at sea.

What’s the protocol for what one should feel psychologically or emotionally following a spouse’s devastating accident?  I’ve experienced a grief-like arc of feelings since that dreadful May afternoon.  I’ve painted in shades of straight-up petrified, stunned, sad, humbled, relieved, thankful, hopeful, hopeless, disappointed, frustrated, and now I am painting angry, crimson red.

Here’s a little speech-language therapy compare and contrast activity for us, kids.  Ready?  Here’s what they say to you in the aftermath of the accident that changed every single thing about your life.  And here is what they literally mean.

When someone endures a catastrophic accident like your husband has, we are here for you, and will get back to you ASAP to answer any questions you may have.  We may respond to your email tomorrow, maybe next week, possibly never. 

Certainly we should have covered that–I don’t know how that got missed. Submit those receipts again and we’ll reimburse you for those expenses right away.  If you’re asking for reimbursement for out-of-pocket expenses, you’re looking at a good 3-4 months and several emails.  Go ahead, grab a snack, you’ll be waiting a good while.

We’re family.   By”family” we mean that you’re the weird uncle twice removed that no one wants to be stuck next to at dinner.

You’re the quarterback, you’re in charge.  I’m not even the junior varsity fourth stringer.

Of course we’ll work with you.  We won’t work with you.

Anything you need, you just let us know.  Actually, just don’t.  Please. 

We will try to see what we can do to help you, but we can’t promise anything.  “Trying to see” what you can do to help is doing exactly nothing, which is exactly what you’ve done.

I am miserable company at work, which is about the only company I’m forced to keep. And I’m so sorry, girls, for not being the Ol’ Faithful I was before, for being barely tolerable most days at that.  I still laugh and joke with my coworkers because they’re brilliant and funny, but my own humor too quickly crosses the line from snark to dark.  I can’t be the advocate there right now, and my lack of fire surprises even me.  Even when good things happen, and they do happen, I celebrate them then quickly retreat to the land of glass half empty.  My view feels like it does when you’re trying to hear while swimming underwater–you hear sound–you know it’s there, but it’s so heavily filtered and weighted, you can’t make meaning.

Being forced not only to make meaning in the business world of highly specialized medicine, insurance claims, and payroll, but also to become expert at it is exhausting.  Ironically, though thoroughly exhausted I don’t sleep well or much.  I’ve become mistrustful about what I’m told, and I don’t enjoy feeling like the little guy being set up for certain failure.  Back in May, I told Jen, one of Tom’s ICU nurses whom I loved, that I was “OK smart,” meaning I had a decent grasp of the medical information they provided me in those early days, but OK smart is not near enough now.  Back in May, I knew that the frustration I’m now feeling was on the horizon–I knew I’d get here, to where OK smart wouldn’t cut it, but I don’t much like it here.

My husband didn’t ask to be run over by a truck–he didn’t pick this.  I’m not so naive to cry how it’s not fair, but dammit, it’s not fair.  Our friends and family have moved mountains for us. It’s astonishing how truly right and good people can be. But these and all institutions should do what’s right for those who’ve been wronged because it’s the right thing to do.

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.

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

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.

 

Just Say No

The actions we take to demonstrate love for our children sometimes seem contrary to the very children we love. Sometimes saying no to a child when they want or want to do something a parent knows will be bad or unhealthy or just not possible for whatever reason can make a child angry. “It’s not fair!” is a familiar cry heard by parents worldwide from about the time a child learns to talk until adolescence. OK, through adolescence and even into adulthood.

Saying no to a child doesn’t make a parent mean or abusive or unreasonable. Any early childhood developmental text will teach you at that children crave boundaries. Children need limits, and test those limits in pursuit of their development of sound decision making.

I was selected and sworn as a member of a jury this week.  Being a licensed driver meant that I became part of a group of average citizens hearing testimony on, deliberating, reaching unanimously, and delivering a verdict on a serious case.  I wish not to go into detail because it feels sensational and in poor form even to discuss someone else’s business.  Not being able to talk about my day, and being made to absorb sad and even shocking details took a toll on my well-being this week.  If you believe jury duty to be a free pass or a joke, allow me to disabuse you of that notion.  There was no humor in our case.

Of the many, the testimony of one witness in particular stuck with me.  The lesson that I took away from that heartbreaking Q&A is that love isn’t enough. Giving a child everything he wants because you are afraid saying no to him will make him think you don’t love him isn’t love. Or maybe that’s what love is/was to her; who am I to judge another?  Yeah, I get the irony in my asking the judging question. . .  But never saying no, then enduring a life of abuse and fear from the child you claim to love isn’t a life.  Never saying no is granting another human being tacit permission to wreak hell and havoc without fear of consequence, or even knowing what a consequence might be.

I came home from court that night wrecked, and I immediately ran up to my sophomore’s bedroom.  Once I pried the headphones off, I sat on the side of his bed with him, telling him that sometimes I have to deny things or exert consequences for the stupid shit he does, not because I’m mean but rather because I love him.  I want him to know right from wrong.  I want him to see that his actions are the stone causing ripples in the pond around it.  I want him to understand he is not the sun of the entire universe.  I believe it’s something I’ve been doing his entire life, but after court Tuesday, it was imperative I spelled it out again.  To him this “give your mom a hug moment” had to be an utter non-sequitur.  He played along, agreeable boy that he is, and I was able to sorta vent in some weird way in order to keep my tenuous grip on my sanity that day.

Even when I want to throttle either or both of my boys (see Mom’s Exhibit 1 below), I believe I have done my best to help them understand that being a good citizen matters, and it started early.  When Number One Son did or said things requiring parental intervention, we used to make him “sit on the stairs” for period of time in punishment.  The child, even at ages 2, 3, 4 years old would inquire about the length of his stint on the stairs before committing his “crimes.”  I’d instruct him to pick up his toys.  He’d retort, “What if I don’t?”  I’d say, “You will!”  He’d come back again with, “What if I don’t?  How long will I have to sit on the steps?”  I used to remark then that he’d grow up to be a politician or litigator–funny how my stint in court recalled these exchanges to mind.  I remember fits of “it’s not fair!,” and responding (and I quote): Life is full of disappointment, son.  Get used to it.

It really couldn’t be simpler:  The hole in the wall is a magical portal to the basement laundry area, kids.  Open the door, slide your dirty socks down the hatch, and the socks get returned to you a few days post-insertion, clean.  

Despite the dirty sock evidence here, he’s a decent human being.  They both are.  Even when I take a tone or roll my eyes or make them go to bed early or prohibit the purchase of inappropriate video games or ground one of them for falling asleep in class (!?!?!!!!), they know I love them.  They’ve been told “no” more than once, and they’ve survived the disappointment.  They’re good decision makers in terms of keeping themselves out of trouble, achieving academically, and being good friends.   They’re far from perfect, but who is perfect?  You??  Not me.  

For what it’s worth, the trial and jury process wasn’t TV-shiny Law & Order perfect, but it worked as intended.  It was taxing human drama, and I believe we arrived at the correct verdict.  We obeyed all of the judge’s orders and instructions, upholding the integrity of the jury process.  I’ll never see the other eleven again, and I wish we hadn’t been called to spend a week together, but I’m better for having met them.  I learned a great deal about how courts operate, and learned that even among people with terrific differences of opinion, opinions can be shared and arguments made in a civilized, solutions-based manner.  There’s a lesson in this, and now that I’ve led you here, I’ll leave it to you to figure that lesson out.

I’ve worked in education nearly three decades, my North Star the belief that improving the communication skills of our city’s youngest and most in need will lead to better outcomes for them, improved academics and problem-solving skills are a surer path to success in and out of school.  NOTHING I teach or impart in a therapy session to any kid is going to make a damn bit of difference if he or she lives a free-for-all everywhere else.  Case closed.