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.

The Kindness of Strangers (or That One Time I Accidentally Poisoned My Husband)

Apparently hiking the perimeter of Geneva Lake has become an annual event for my husband, so it’s an event for me as well. It’s not a mountain climb in terms of vertical feet; in fact, it’s a fairly flat, even path. It’s just that it’s so long, between 22-23 miles depending on your source, and you don’t exactly plan for anaphylaxis, you know?

We began and ended at the pin in the lower left corner of this picture. I’m exhausted even looking at this!

The Lady In The White Mansion

Six of us began our lap at 8:00 AM. The day could not have been more pristine, more perfect. The sun shone in a cloudless sky, a light breeze kicked off the lake, and we came prepared this year. I’d packed band-aids and ointments, hydrocortisone and capsaicin creams, ibuprofen, Tylenol, AND migraine meds, along with first aid tape and scissors. We brought a stash of water, energy bars, granola bars sufficient to fortify the six of us through lunch. We were GOOD.

But then we weren’t. We were not good at all. About six or so miles in, my husband ate a blueberry Larabar. I’d read the ingredients list for the lemon Larabars, so warned him off the bars in the yellow package. He has a nut allergy, and energy bars aren’t usually on our grocery list, but I selected bars that didn’t have nuts in their names. Don’t ask me why I noticed the nuts in one and not the other, but there it is. He neglected to read the ingredients himself, and soon after eating the snack in the blue wrapper, went into anaphylaxis.

As we continued, I asked how he was doing, like as Joey from the show Friends would ask, “How YOU doin’?” My husband quietly replied that he’d tell me later. I cracked back, “But what if I want to know now?” thinking I was being cute, and he then admitted that he was having a bad allergic reaction, and didn’t quite know how he was, in fact.

Naturally I felt 100% at fault. I tried to assess the situation logically, and develop a plan, if that’s even a possible thing at this point, a “plan”. . . Other family members had coordinated meeting up with us walkers for lunch at the halfway point, so I dialed up one bro- and sis-in-law, pleading with them to purchase some Benadryl as quickly as they could, and drive in our general direction. And they did. Minutes later, we encountered a lake resident, a woman overseeing installation of her pier, and I interrupted her awkwardly and desperately, inquiring if she had Benadryl he could have.

She did, and invited me to her home (about 200 yards up the hill) to get the medicine. I am sure I began to act frantically now that I knew we were close to at least some immediate relief for him, and as we walked up to her home, my brother-in-law called to say they were on their way. I explained to him that this incredibly kind lady had agreed to give us a few Benadryl pills, and for the moment we were likely going to be OK. She overheard me say that my husband had unknowingly ingested nuts, and she put the pedal to the metal. Maybe in response to my (I’m sure obvious desperation trying not to freak out) comments to my brother-in-law, she and I raced up to her home, two doggies at her heels, to get those pills.

I hesitated to enter her home, feeling like a terrible intruder, sweated up and grubby to boot, but she warmly invited me in while my tears began to fall. How could I let this happen? How could I not have noticed? She dashed to her medicine cabinet and returned with the goods, then volunteered both bottled water and a ride back to the shore via her golf cart (yep, that’s how far up her home was from the shore, and how willing she was to help). I declined both, now clearly desperate to get that medicine in my husband’s bloodstream, and ran back down the hill. Before I left her, I thanked her profusely and sincerely (at least I hope that was the message she received). I mumbled something about if not for stupid COVID, I’d have hugged her and how much I appreciated her doing what she did, opening up her home to some random woman passing by during a pandemic.

I wondered what she thought of our brief time together after the fact. I wish I knew her address because I owe her a thank you letter. I hope that if when we hike the perimeter again next year, I recognize her house and have the chance to thank her personally. I thought she probably has some story to tell her friends and family given my dramatic performance, and I hope she knows she did something truly good that Monday.

May I Use Your Bathroom Please?

An effect of anaphylaxis is internal distress, and by distress I refer to nausea and intestinal, ummm, uncertainty. You probably think that the severity of my husband’s allergic reaction meant an end to our trek around the lake. OH NOOOOO, not my husband–if a little thing like massive trauma and nearly dying after being run over by a truck didn’t stop him, you can bet that something so inconsequential as this silly little allergic reaction wasn’t going to stop him either.

We did lose track of him for awhile, which you may think is impossible and perhaps even irresponsible. Like, Wendy, you nearly murdered him with cashews and you can’t even keep eyes on him? Yep. In his quest to reach the restaurant we were to meet the rest of the family and avail himself to their facilities, he walked so far ahead of us, we lost sight of him in the crowd. My brother-in-law says I worry too much, but when you literally lose an adult, you wonder about your ability to take care of your shit. My relief at being reunified with him was a living, breathing creature, I swear.

A visit to the restaurant restroom, a tiny little lunch, and two more Benadryl down the hatch, and we were off for the second half. He could breathe, though was swollen, itchy, red and rashy, but I knew like I knew my name he was not going to end his quest. One of our six had called it a day at the halfway mark (still an incredible feat, mind you!), so the remaining five of us sallied forth.

There are few restaurants or public parks along the shore path, so in terms of food, drink, and potty stops, you’re limited. During the week, many homes are vacant, so you actually see very few people around the lake. Should nature call, the guys could find woods or sneak behind a tree for the most part, but for us girls and those of us whose bodies are trying to rid themselves of toxins, public facilities are scarce. I could detail how uncomfortable he was, but that’s my hubby’s story to tell, not mine. Suffice to say that it takes real nerve to approach a random stranger tending to the gardens outside her home, and ask to use her bathroom. He did. She said yes. Hero #2 of the day, that one.

Need a Ride?

Shortly after the bathroom incident, another of the group decided he’d had enough. To be more accurate, I guess it’s fair to say his back decided he had had enough. As we had processed out of Lake Geneva proper earlier, I said to him that we were kind of at a point of no return, meaning he was committed til just shortly before the bitter end (another ten miles or so), so he better be committed. . . Well, I was right and I was wrong. It wasn’t easy, but he continued for some time until he happened upon Good Samaritan #3 du jour. A motorist offered my bro-in-law a ride back up to the main highway from the shore–turned out to be an almost three mile drive! He was delivered to a local pub where he waited for his personal Uber driver, his sister. It didn’t seem like hitchhiking, but I guess that is exactly what he did. Not a scary, crazed potential axe murderer to be found, just another kind soul, understanding of the toll that shore path can exact.

Monday was a good day for humanity.

The Finish Line

Ten hours after beginning, sidetracked by lunch, allergy, and injury, four of us crossed our imaginary finish line. I felt so accomplished! My husband told me I looked strong, and I felt it. “Nearly murdering you,” I said, “was motivation enough to get to the checkered flag with you. There’s a responsibility there, you know?” Though my hips, ankles, knees, and brain were numb, it was a good-numb. Something like that anyway.

We did it!

The moral of the story is to read carefully. Or maybe the moral of the story is to be kind. You pick. Monday provided several examples of people doing the right thing because, for no other reason, it was the right thing to do. I was overwhelmed by the kindness of strangers, there’s no other way to say that. I thank you all, strangers and family, for your role in getting us there, to the start/finish. Overlooking the lake from any vantage point, you can’t help but marvel at its size. It’s. So. Dang. Big. I must be nuts to have done this. Again.

Knock-Knock

Knock before entering. It’s a rule of polite society. There are even pre-printed signs indicating the preferred practice.

Before we nodded off into blissful slumber last night, my husband and I had lain in bed reading. My Number One Son came barging in, saying because he wasn’t sure we were still awake, he didn’t want to knock. You know, in case the knock would have woken us up.

“You always knock!” I replied. “That’s what we’ve taught you to do. I respect your privacy in the same way. I don’t enter your room without knocking first, do I?”

“But I really didn’t want to wake you up if you were sleeping.” (Which, OK, I’ll concede, was a demonstration of good judgment, yes.)

“What if we were doing it?”

“WHY WOULD YOU SAY THAT?”

We weren’t. And I’m sure the boy had never even suspected it might be the remotest of possibilities in that moment. Or ever. I can only imagine the million thoughts racing through his mind in the few seconds before he replied. But I can tell you for sure his face screamed horror.

(I. Am. Dying. Laughing.)

He continued, stammering, “Now it’s all I can think of. I can’t. Uh. . . Now, oh my god, I just. . .”

“I bet you’ll knock NEXT TIME though, won’t you?”

He hung around for a couple minutes more, all of us chatting about the issue he actually came to us about in the first place, and him in particular working overtime to un-imagine the conversation and imagery that had just transpired. Me? I could NOT hide the stupid grin that refused to be stifled.

Lesson learned. Victory to the mama.

School Colors

Me to my younger son, as he’s getting dressed for his baseball game: I just love your school colors!

My son: Not exactly a vacant stare, but not exactly a look of accord.

Me: Do you know what color this is?

Son: I know it’s either blue or purple.

Me: It’s the best shade of royal blue. Come here once, let me show you something.

Me: Take a look at this tile in the kitchen backsplash. What color is the outside square?

Son: It looks blue to me.

Me: It is. What about the inside square?

Son: Pink or red maybe? There’s no way that’s purple.

Me: Yep. It’s purple.

In the grand scheme of things that can be obstacles, but aren’t precisely devastating, among them is color blindness. It’s not going to hurt him physically (unless he decides maybe to try his hand at electricity), but sometimes I see what he can’t. There is beauty in the most everyday of scenes.

Go, Huskies!

For Worse or For Better

I think when they, whoever “they” were, drafted the wedding vows that have become pretty much today’s standardized script, instead of saying “for better or for worse,” the pairing should have been led with worse, as in “for worse or for better.” They do the sickness before health part in the vows, so they shoulda gone for consistency.

Leading with “for worse,” it just sounds more serious, like probably you should pay more attention to Item A than you do Item B as your wedding officiant goes through the spiel. It’s more in your face, right? Oooh, worse? I mean, that’s something I should really lock down. Sticking with anything when it’s better? That’s easy. It’s the when it’s worse part that requires more depth, more commitment. When you’re marching down the aisle in your white gown, bouquet of tulips in hand, you don’t actually envision worse. It’s ridiculously incongruous to the celebratory theme. I mean.

At their wedding, no couple really thinks about worse as they stand smiling up in front is what I’m saying, but the worses, well they’re there. (And did anyone notice I used their, they’re and there in one sentence?) Today marks eighteen years since our “I do.” Happy anniversary to us!

Eighteen years and another lifetime

OBVIOUSLY when I write about “worse,” I’m referring to “the accident.” Sorry for all the quotation marks in this post here, geez. There really needs to be a font for my tone of voice. Anyway. THE ACCIDENT. That’s about as worse as worse gets. It’s a curious fallback topic–when speaking to people who don’t know me well socially or know me only through professional contact, there’s always THE ACCIDENT to take up conversational space. People are so kind to ask after my husband’s well-being, and I appreciate their asking. It’s a kindness, that concern, and honestly, the accident occupies a great deal of my mental bandwidth a great deal of the time, especially around May 7, the worse of the anniversaries I observe this week.

At a weekend family gathering, a few people mentioned the anniversary of the accident to my husband. Unlike me, he doesn’t mark this date in his calendar. He asked if I thought it was odd he didn’t even remember the date, or that May 7 didn’t carry significance for him. (Internally, I was like, Honey, since your head was smashed and cracked open on the concrete, that’s just one thing of a million you don’t remember. . .) I wish I had his particular brand of amnesia! I can’t wait for the year I wake up on a May 7 and the memory of meeting Yellow Wood Doe in the Emergency Department isn’t the first mental movie scene punching me in the face. And isn’t that the most bizarre John Doe name ever, Yellow Wood? That was who he was for a week, Mr. Yellow Wood Doe.

Worse is when you learn what you’re made of though. Sometimes I feel like a dang superhero–how did I not lose my mind? My survival of his accident was entirely different in scope and scale than his; he WAS a dang superhero to have survived.

My younger son’s baseball season opened Friday night, Friday, May 7; in my mind, baseball and the accident are inextricably linked. I distinctly recall thinking that what I was doing for the kids in the days and weeks following the accident–getting the boys going to school, arranging for them to get to baseball and music lessons–was meant to help them, to keep them in “their routine” while understanding full and well that I was screwing things up. Scrubbing baseball pants clean (I am SO GOOD at this, you guys), I’m reminded of how much I messed up then and how much I’m messing up since.

I tried though. I tried then, and I’m trying now–and I don’t just mean about getting grass and dirt stains out of baseball pants. My attention span is shorter and I’m a weak conversationalist, either grunting single words or babbling incessantly. I’m constantly worried, and I’m easily distracted. My brain is much like my work computer with a hundred tabs open at all times, but I’m still trying.

Today is not a for worse day though, it’s a for better. Happy anniversary.

Mother Nature Hates Baseball

Over the previous several weeks, I’ve covered a range of emotions, most of them strolling down the less-than-sunny side of the street. Today however, I woke with a renewed enthusiasm and more optimistic view of the world.

hahahahahahahahahahahahahaha *insert cry-laughing emoji*

OK, well it’s actually partially true.

Several weeks ago, our school board voted to return to in-person teaching and learning for the first time since COVID-19 took over our world. For reasons I’ll never understand, the Board dropped an eleventh hour bomb, adding an amendment minutes before the opening gavel for the meeting. They proposed and passed the amendment to exclude students in 9-11 grade from returning, requiring instead that they continue to stay home, accessing classes via their Chromebooks. So my children, a freshman and a junior, weren’t even afforded the option to return.

The Board’s decision to exclude 9-11 graders included a caveat: Students would be allowed to return IF they were in danger of failing.

My first reaction to that news item was, oh yeah, super, let’s make kids who are failing feel even worse, let’s single them out and “let them” go back. Two things: One, super discriminatory, no matter how you slice and dice it. It was much later that I arrived at thing two, turning thing one on its ear–let’s punish the kids who aren’t failing by keeping them isolated. Point two didn’t truly hit me until I received a text from one of my kids’ friends’ parents, asking if their child could hitch a ride home from school with mine. I launched into a rather unattractive rant (not to this parent via text obviously, just to myself) about my children working their asses off, excelling academically though virtual, and being denied the opportunity to be with classmates. Socially distanced. Masked. But still, WITH PEOPLE. Ugh.

I drafted a rant-y blog post, and subsequently pulled it back. I don’t need to put my ugly out there. I reframed. My kids are lucky enough to have excelled academically. It should be enough. (It’s not enough, but I’m trying to make myself believe it’s enough.) I’m focusing on the one school-related activity one of my sons can do: baseball.

Locked out of in-person instruction, at least the district opened up spring sports. Though sports are limited in scope, my baby gets at least to be part of a team this spring. He’s been able to pitch, hit, and run, and if he’s not better for it, I know that I am. I know that he is too, actually, and he’s actually not pitching, but he IS going to don the RRHS blue and grey. Go, Huskies!

They were set to scrimmage their cross-town rivals this afternoon, his first crack of the bat at the high school level. Naturally, and in keeping with his long history of picture-perfect weather on every day except game day, there’s a near certainty of thunderstorms at game time. Come on Mother Nature, can ya give these kids something???

It hits me that it’s possible that I need him to play baseball more than he needs it. I was so looking forward to seeing a game, doing what I’ve done and loved doing since he was six years old. Baseball has been an evolution for him. He was an exceptional tiny guy ball player, because even when he was a tiny guy, he wasn’t physically tiny. He towered above other kids his age, and had good ball sense. He was strong and fast, and hit legit over-the-fence homers when he was ten. He suffered a growth plate separation at age eleven, which effectively removed him from pitching or even throwing that season; it affected him physically as well as accuracy- and confidence-wise.

His dad was run over by a truck at age thirteen, and in my son’s own words, “I just wasn’t able to keep my head in the game” that season. I remember thinking then, almost exactly two years ago now, that getting him to baseball practice and getting him to his games would retain some semblance of “normal” or “routine” while his dad lay hospitalized, nearly dead. I also remember thinking then that I was messing him up bad, playing the “let’s keep your routine” charade. I was, and this is a generous assessment of my mental and emotional health in the accident’s aftermath, a goddamn mess. There was no way to win. The coaches cut him at the end of his dreadful season, which hurt his heart and broke mine. He’s not the aggressor he once was, and I don’t know that he’ll ever recapture that, but beast mode is not exactly his nature.

My kid shows up, he works hard, and is as loyal as the day is long. My quiet, wouldn’t-say-shit-if-he-had-a-mouthful son, the kindest, sweetest, gentlest of giants still gets to be part of a game he loves, and I am 100% happy about that. I can’t wait to see him play this season! Be it a little or a lot, it just probably won’t begin tonight if Mother Nature has her way.

There’s No “We” In “Mom”

Out of the mouths of babes. . .

OK, out of the mouths of seventeen-year-olds.

Even before the accident changed everything, as the saying goes, I was the family’s financial manager. I suck at it, and I hate having to do it, but again, as the saying goes, someone’s gotta do it, right?

When the US economy collapsed back around 2008, my husband was periodically unemployed. My hair was literally falling out as a result of the stress I felt during that period. Which, side note, is why I keep my hair long now. In case the stress monster wins any current or upcoming battle against my autoimmune system, longer hair can cloak the bald spots alopecia causes. It’s also why my hair is wavy now–it grew back differently than how it started. Man, the human body is weird! Anyway, where was I. . . Ah, my husband’s unemployment, yes.

He’s a spender, that one, and no savvy shopper; he buys what he wants when he wants it, no matter the price tag. To be clear, it’s not like he piddles money away. Honestly, he spends little on himself when it comes to clothes or material goods. He is a thoughtful and generous gift-giver too, but he’ll never wait for a sale or use a coupon. What he wants, when he wants it–that’s my husband. So, during those dreary days of recession when construction came to a screeching halt, so did his income. In light of my ever-expanding bald patches, I suggested he pay the bills for a while. He found himself with time on his hands, and I found myself wanting a break from it. Plus, full disclosure: I wanted him to understand just how much less money was coming in and how our bills bled it out of us in a real quick hurry.

My social experiment lasted less than one month. Guess how many bills were late that month? ALL OF THEM. He didn’t attend to one, single debt, so not only were the bills left unpaid, there were now late fees due on top of those accounts. You can imagine my displeasure. Yeah. I’ll never know if he did that (or didn’t, I suppose) as an f-you back to me or just ran some next-level Tom Sawyer kind of scam on his dear, balding wife. But I’ve paid every bill in our twenty year history.

I also do our tax preparation, at which I also suck and hate with a fervent passion. Every year, before I click the send button, I announce to him and the universe that I’ve filled in the boxes as accurately and completely as I believe I can and in entirely good faith. If I end up in federal prison for income tax fraud, I may be guilty, but I am guileless. Turbo Tax is great, but I have never not felt like I’ve gotten it all wrong.

This morning I met with a CPA who will be preparing our 2020 return. I just can’t handle that kind of stress this year. If I’m gonna get hammered by the IRS, I’d rather the news come from a kindly gentleman sitting at a desk than from my computer. My computer and I are spending entirely too much time together these days, and I need not to resent it, even if it is merely the messenger of impending income tax doom.

Before bed last night, I’d announced to my family that I’d be heading out early to meet with the CPA. Number One Son makes an inquiry about why I’d need to meet with someone else to complete this work. My husband chimes in with something like, “Well, you see, son, when we do our taxes every year. . .”

I couldn’t help myself. My head whipped around so quickly the breeze could be felt for miles. “What’s this WE??? Who is WE?? WE don’t do our taxes.”

Number One Son: “Yeah, there’s no ‘we’ in ‘Mom.'”

I skipped up the stairs in delight.

Not because I’m an asshole who enjoys taking a swing at her husband in front of the kids (although I’m sure a good many of you would and could say that about my behavior here), but because 1) his comment was funny, and 2) maybe he is paying attention??

As I’ve chronicled ad nauseum, I’m the default setting in our family. And while that’s going to be the case until the end of my time, out of necessity (the necessity being my sanity), I’m handing over the reins to some tasks and responsibilities. I can’t do it all anymore, and I never should have. I can’t model for my children the expectation that their mate will take care of everything. This is not to say that I’m anointing myself sainthood. There is a division of labor in our home, but the seat of our family’s executive functioning is embedded in my grey matter. And when I don’t do it myself, I do have to remind/follow-up/lose my shit when the other three manage their thinking stuff, so really it’s closer to 100% than 90% still. But this is a start.

There’s no “we” in “Mom.” You got that right, kid.

Composition In F Major

Our school board voted last night on the return to live instruction. There was no way any one plan would satisfy everyone, that was a given, but the board’s decision hits home especially hard. Neither of my children will step foot in a school building this year. Not one class will be offered to either of my sons live. How do you instill, or try to instill anyway, a sense of hope about their world in the face of annihilating pessimism? More accurately, how do you simultaneously encourage optimism while ensuring you mention, “It’s possible that someone else’s decision is going to crush you?” There are a million ways your heart breaks when you’re a parent.

To be clear, I’m all for keeping my students and my children safe. I am not in favor of my own children or those in my charge contracting COVID. I’m pro-good health and observant of social distancing; I wear a mask and stay away from immunocompromised individuals. I avoid contact with people whose COVID boundaries are, for whatever their reason, stringent. When you tell me you haven’t left your home at all during the past year, I won’t disrespect you by violating your personal space.

An eleventh hour amendment to the district’s reopening plan excluding only high school freshmen, sophomores, and juniors from face-to-face learning opportunities for the duration of the school year feels specific. Any “We care about your mental health” or “Don’t forget to practice self-care” is, to their ears, straight-up bullshit. You’re talking about adolescent brains with immature and still-developing executive functioning. This group of students is not exactly known for its stellar decision-making or emotional stability. They’re children, still, desperately seeking direction, equilibrium, and connection in a real way in their real world. They look to adults to model healthy debate and data-based decision-making. When adults pull the rug out from underneath them, they falter. And they distrust.

Decision-makers, the people earning a much higher salary than mine, are far removed from the detritus of their decisions. I woke up dog paddling through a pool of it. To their everlasting credit, neither of my sons complained. They trudged through their morning and mourning in heavy resignation–I hear the tone in their voices, I see their social media posts and stories. The crunchy carrot of hope that had been dangled in front of them has been dashed in a move no one saw coming.

I needed to hear something good today. After we hugged it out, I asked my firstborn to share with me the piece he composed for his advanced music class. My son keeps most things close–even allowing me to listen to his composition was something I know stretched him, but he did acquiesce. He’s a good boy like that.

Using music composition software, he created melodies and accompaniment designed to be played by a string quartet. His composition is the most upbeat, optimistic piece of music I’ve heard in an age. Maybe that Calypso ensemble is paying off? I mean it’s physically impossible to be unhappy while listening to steel pans, and his Calypso music rehearsals and performances are the ONLY normal thing my kid has done in a year. I wept tears of joy as I listened. I love it because my kid wrote a song, y’all!!! But I would love it if I heard it on the radio or performed during a concert at school. His classmates and teachers offered suggestions for change and improvement, which he then incorporated into his piece, now hitting its final grading submission deadline.

I can’t help but wonder how much more he’d have gained from being in the room with his classmates as they offered critical feedback. You reveal a lot when you’re opened up for such scrutiny. I’ll never know what it’s like to write a piece of music, but I experience that fleeting buzz of “should I or shouldn’t I?” each time my finger hovers over the publish button here. Creativity can be something you keep for yourself and no one else. But sharing your creative endeavor forces you to expose yourself. I think he’d have gained much from his peers in that exposure had he been in the room where it happened (bonus points if you sang that last part a la Hamilton). Not this year though. Nope.

His piece has a working title, but he’s not settled on it yet. I’m thinking “Tears of Joy” or “My Mom Is Such a Sap” would be apt.

Rare Disease Day

Only after my son’s muscular dystrophy diagnosis did I come to find out that Rare Disease Day is a thing.

Which I guess is the point, right? Rare means these many diseases are so low in prevalence, receiving so little press that they don’t get their own day or ribbon color or rubber bracelet to recognize them and “raise awareness” as these things go.

Scrolling through my social media this morning, I came up a meme celebrating Rare Disease Day and I kinda wanted to chuck my phone across the room. Celebrate? Ummmm, I’ll pass on that party. There isn’t one single thing about MD that I would don a party hat for. What is there to celebrate about progressive neuromuscular disease in any of its forms?

This isn’t the party-theme meme, but proof that Rare Disease Day is for reals.

Since I’m not cutting celebratory cake today, I propose that rather than whooping it up (which, OK, I’m relatively sure isn’t what the meme’s original poster intended with her use of the term “celebrate”), we take a moment to educate ourselves. Rare disease isn’t limited to my corner of the world affected by neuromuscular disease; rare diseases affect all shapes and sizes of people and the internal systems that run those people. If you know someone who looks a little different than you do or behaves in a way that seems different than your behavior, or moves in a way that seems labored or off-center, take a moment to consider why that might be.

Rather than divert your gaze from what you observe as weird or different, instead maybe you do a quick little Google search. Maybe seek a smallest morsel of introductory knowledge and understanding. Knowledge and understanding are certainly entry points to empathy, the awareness of the feelings and emotions of other people. The world could stand a whole lot more empathy and human kindness these days. I’ll start: for information about muscular dystrophy, ALS, and related neuromuscular diseases, my launchpad is the Muscular Dystrophy Association.

I lied earlier when I said there was nothing to celebrate about MD. The faces of the MDA are worth celebrating. I’ve written time and again of the ways the Association has benefitted kids with neuromuscular disease in general and my son in particular. For my friends, family, blog readers, and even random strangers who’ve donated to our Muscle Walk team, YOU are definitely worth celebrating. For you, I’d definitely toss confetti! I’d even get balloons.

Hostess Gift

One of my sons had a friend over this week. The kids enjoyed an extended holiday weekend, and craved camaraderie to cap off their four-day furlough.

Before you jump ugly on me, this was not some super spreader event. Our family has observed quarantine and precautions as good as or better than many. I say this not in the way of the “We are COVID-safer than YOU, nanny-nanny boo-boo” martyrdom/shame posts I read all over social media (which occur with less frequency these days than the “COVID is a hoax and you masker snowflakes violate my ‘civil rights’ and I’m partying with ten thousand of my closest friends at the bar anyway” photos shared abundantly). I say it because my children share precious little time with their friends and the outside world, and need periodic face time vs. iPhone FaceTime these days. They continue to observe protocol.

So, friend dude comes over. Bearing gifts. For ME!

It was surprise enough that anyone showed up, given the massive dump of snow we got Monday night into Tuesday afternoon this week. When all was said and done, Mother Nature graced us with more than a foot of pristine, lake effect snow. I wasn’t driving out there, but an intrepid few did hit the road behind the wheel of their four-wheel drive SUVs. Fortunately for my kid, his buddy’s father was one of those intrepid motorists.

So this young man shows up, sheds his snow gear in the back hallway, and armed with a wrapped gift, thanks me for having him over. I accepted his lovely gift with a ridiculous smile, goofing “Get out of here!” in reply. We both laughed, and I’m at once touched and ashamed! I mean, I’ve sent my kid to friends’ houses with bags of chips, money for pizza, or dozens of donuts to help share the load of feeding teenage boys! But I’ve never sent a hostess gift for a child’s mother. This kid even hand-wrote a thank you note, and wished us a happy Valentine’s Day. Come ON! I joke about being constantly passed over for the Mother of the Year Award, and I think we can all agree I’m not even top 20,000 material. But this mom? *Ding, Ding, Ding* We have a winner!

Hand-written! Went straight to my heart.

I think the world of this kid, and even maybe a tad more, his mother, for making that happen. Good behavior and enviable etiquette don’t happen by accident. You can be full of all kinds of good character and goodwill through genetics, but not arriving empty-handed, complete with a handwritten note of thanks is a taught skill, not an innate one. The family’s thoughtful gesture warmed my heart and made me happy. More than that, it gave me hope. There are still parents teaching their kids to write notes of thanks. There are still parents who bestow gifts and other tokens of appreciation. It gives me hope because these parents are showing the next generation that being kind and expressing thanks matters.

Takeaway: That taking time to do something nice for the sake of doing something nice rewards on both sides.