Early Bird

If you’re open to it, sometimes nature/the universe/some higher power/I have no idea what I’m talking about here gives you a sign or a gift.

My little one (I say he’s my little one, but in reality, he’s a six-foot-tall thirteen-year-old adolescent) departed for his class trip at the crack of dawn yesterday.  On social media, I shared a photo of him and his dad, with this caption:

And just like that, your baby is six feet tall, heading out for a week on his class trip.  Before you can blink, and whether you’re ready or not, your babies spread their wings and take flight (or a coach bus, in his case).

It’s Monday, where I arrive at my school about an hour before most of the rest of the staff.  Not that they’re slackers or anything like that, it’s a late start school.  Since I have to get my big kid to his bus stop at 6:44 AM, I’m off like a shot in the morning.  I appreciate the quiet, early morning vibe here.  It’s a calm start to my work week, providing me time to lay out my lessons and gather/organize the materials for my therapy sessions.

This morning, this early bird definitely got the worm.

No, not this literal early bird–ME!  This bird here?  He clung to the screen outside my window, casting its shadow through the window shade. I quickly grabbed my phone, and snapped several pictures of this tiny, winged creature from my side of the window.  I never got to see the bird itself, just its shadow, but that was enough.

And just as I sat down to type a quick thought here, I received a text message from my son’s teacher/group leader saying the class trip kids were great, the weather was in the 80s, and they were heading into Monticello.  Like this bird perched outside my classroom, my little one’s got wings.  And sunny skies under which he can shine himself.

I know it’s what you’re supposed to want for you kids–for them to find their way and fly–and I do want that for him.  But sometimes I just miss his pudgy, little toddler face or the way he used to climb in bed with me (though, OK, I don’t miss the way his formerly little self commandeered an entire king size bed, sleeping on the diagonal).  I miss his constant use  of “ninnercrommie” and “shimmy hommer boaker” and a litany of other made-up words that still make me giggle.  I miss my boy–not my baby/always my baby.

Top Fan

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

I received a Facebook notification yesterday.

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

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

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

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

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

And The Sash Goes To. . .

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

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

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

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

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

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

I Was Gonna

As I crested the Hoan Bridge, the first leg of my freeway commute to work one morning this week, I was positively taken by the pastel cotton candy swirls of lavender, tangerine, carnation pink, and indigo the sun was painting as it rose over Lake Michigan.  I consciously thought, “I need to write about this, maybe snap a photo of these colors dancing off the mirrored exterior of the Northwestern Mutual Life office tower.  I need to find the words to capture this breathtaking, Monet palette sky.”  Grateful by Better Than Ezra was streaming through the Bluetooth, the perfect complement to this sky.  This SKY, you guys! I had a moment.

My song ended as I made the 90-degree turn west, and with it ended that moment of zen.  Heading west alters the view from “sunrise over Lake Michigan” to “the way to work,” so I needed reinforcement.  I remembered I’d downloaded an audiobook, Theft By Finding, David Sedaris’ most recent collection.  Siri sent it to my Bluetooth, stepping over the last notes of my powerful little pop song abruptly.  Within my first few minutes with Mr. Sedaris, he read of culling through decades of his diaries, what he noted as sufficiently remarkable about his days and nights.  That when he did not find something of import on a given day, he resorted to recording blandness like the weather or how the sky looked that day.

Buzz.  Kill.

So I was gonna share with you the majesty of the sunrise, but pulled back.  I’m no diarist of Sedaris’ caliber, but when someone of his caliber calls it out, maybe hacks like myself should take note.

Any random Thursday, there are a million things to do, but lately I find myself thinking or even saying aloud, “Shoot, I was gonna. . .”  Because I’m an anxious individual, my mind races.  I caution my children against this very behavior, but often, too often probably, I miss being in the moment.  My anxious brain, strategizing seventeen steps ahead, often misses these sublime sunrises because I’m calculating whether I have enough gasoline in the tank to drop #1 off at school, drive to my own school-then to my office-then to a different school-then back to my office-then to a third school, then stop at the Post Office along the way before picking up #1 from school and shuttling him to his bass lesson.  Don’t even ask me about picking up the few ingredients needed to complete my dinner recipe.  Let’s just have breakfast for dinner tonight, OK?

Here’s  a quick sampling of I was gonna tasks I’ve been forced to enlist Siri’s help to complete.  No.  These are tasks I’m resigned to have to enlist Siri’s help to remind me to complete. Or not.  Because even with the list, I was gonna reigns supreme over actual execution of many of the tasks I need/want to do.  And, keepin it real?  Some days I even forget to consult the list created to help me not forget. *sigh*

Get a battery for my car key (Nope)

Add money to kids’ college accounts (No.  I mean I would if we had extra money, but the notion of extra money is absurd).

Look for a new lanyard for T (Does “look for” mean actually “purchase?”  No?  Then no.)

Buy Andrea a Christmas present (Sorry Andrea, nope)

Check out Catastrophe (YES, and YES you should too.  I have laughed out loud and snorted several times per episode.  It’s wildly inappropriate, and I L.O.V.E. this show.  Sharon Horgan is my new hero.  Her delivery of pretty much every line she’s got is perfection.)

Cancel T’s Songsterr subscription (Dangit, another $5.99 down the drain)

Change the bank password (No, because in case I die unexpectedly, the existing password is probably the only one he’d think to use.)

Check my pension beneficiaries (I sent an email, and they sent an email back saying I had to call them to confirm.  No, I haven’t called.)

Send email to the department about Friday’s meeting (YES)

Text Pamster happy birthday (Sure did!)

Order checks (Yes.  With online bill paying services now, I write so few actual checks that I don’t pay much mind to how many I have or when I need them.  I need them.  My not-electronically inclined creditors don’t care about my personal banking strategy.)

Call the dentist (Yes, and I even WENT TO THE DENTIST!)

Buy ingredients for slime for K’s speech graduation party (Yes.  Can’t let my students down.)

Call doctors (Yes.  Can’t let my kid down.)

Look for family photo for Shelly (Seeking is not finding, and then there’s just giving up.  I looked once, does that count?)

Get my Kindle (Yes)

Get a card for Jenna (Yes)

Go to Walgreens (Yes)

Go to the library (Yes)

Get a card for P.J. (Yes)

Leave the door open for Ciaran (He stopped coming over before school months ago, you dope, you can delete the weekly reminder now).

Cancel Apple Music (Yes)

Reinstate Apple Music (Within hours, yes.  MAKE UP YOUR MIND, child!)

Go to yoga (No)

Go to yoga (No)

Go to yoga (No)

I wish this list was something I made up just for fun, but I was gonna is a too-frequent refrain.  I think, I’d like to think anyway, that the people who rely on me would report that my I was gonna has a higher hit rate than the percentage I’ve included here (67% success for those keeping track).  I’m more inclined to follow through for others than I am for myself, which is mostly good, right?  My kids get to their appointments, bills (sometimes mostly almost always on time) get paid, my family eats balanced meals, I show up for the people I promise I will show up for. . .  I wish I didn’t need the reminders though.

And I can’t help but think that this wouldn’t even be a post if David Sedaris hadn’t steered me way from prose drafted in favor of the sunrise. He was wrong though. I snapped this picture a block from my school, and though woefully inadequate in quality, this photo proves the sky merits its due attention.

 

Nextdoor

One never knows who lurks next door, does one?  But good lord, one needs only to belong to a neighborhood social media group to experience by proxy the very worst in human behavior lurking right out there in the open.

Earlier today I sat down to pay the bills (and I swear on all that is true in this world, eleven hours later, I’ve done a million things today except pay the bills!).  Because I’m easily distracted though mostly because I don’t enjoy paying the bills, I checked my email (but also, some of my bills arrive electronically, so checking my email wasn’t exactly a complete waste of time toward the bill paying endeavor).  Anyway. . .

Scrolling through my junk email, deleting quickly as I clicked through 50-60 junk messages, I’m stopped by an email from the Nextdoor app with this subject header: Kid at door at 8:30 Sat. Morning.  I mean, I knew it wasn’t my kid up and at ’em by 8:30 on a Saturday morning, but for some reason, I clicked.  For the uninitiated, Nextdoor is a social media app used by residents to report on neighborhood goings-on, including critical news blasts such as this:

img_3216

“I am not donating because they woke us up.” To quote my friend Maureen, “Way to take a stand.” Sorry about the picture of a screen.  Super low-res of me–bad blogger, bad blogger.

For reasons I don’t fully understand, I lost my darn mind over this post.  The natural response to online garbage in 2019 is to fire back aggressively and IN ALL CAPS, which of course, I did not do myself on the app because that would expose me as this person’s equal.  Instead, I took my crabby pants show on the road to Facebook, like a responsible adult does.  Bah!!  I know, I know. . .

How do people behave in such incredibly dim-witted ways?  How does an adult post a photo of a child not of his/her own in a ranty, pissed-off, online what’s going on in the neighborhood app–the kid’s full face, you guys–and not give it even a moment’s pause?  I thought it was probably a screen grab from a video doorbell, which, unlike my tech skills here, was quite high-resolution, quite clear.

I circled back at the Nextdoor post after a couple Facebook friends responded to my post, confirming my WTH-ness.  I noted that the post had been edited.

img_3217

See I blocked out the picture of the child who is not mine from my public forum.

You can see the tone had been ratcheted down a notch.  I considered maybe replying with a somewhat, “Have you considered how much this child’s mother and father are going to flip their shit when they see this?” comment, but I chose not to, and do you know why I didn’t?  I don’t want a person who thinks this is OK to know where I live.  Fear.  This is my neighbor???  Yikes.

Shortly thereafter, a sweet and wonderful neighbor whom I actually do know (not of the misanthropic variety) informed me that the Nextdoor post had been deleted.

I marinated in my crabby juices all morning over just how gross people can be.  How insensitive, unkind, vengeful, and, and, and. . .  I felt no end to the abyss of negative adjectives I could attach to such a creeptastic post.  These are my neighbors, you guys, the “jury of my peers,” as it were, and it hurt a little bit to think that such rottenness lurks so close to home.  Literally.  After a while, I decided I had to be done with it. To assuage the icky aftertaste of meanness, I would do something good.  No, not enjoy a margarita, silly friends, it was still morning!  I’ve decided to do some trolling of my own, trolling for donations.

Rumor has it that by June 1, Wisconsinites can reasonably expect that snow will be melted and the daily average temperature be above zero.  Mother Nature’s current pattern of behavior notwithstanding, June 1 weather is expected to be lovely.  June 1 will mark our family’s fifth annual MDA Muscle Walk.  It’s the one “MDA family” family reunion I’ve attended since my son’s diagnosis, and since Team Greater Than Gravity’s inception, you’ve helped me raise nearly $10,000 for the Muscular Dystrophy Association.  You can click here to be directed to our team page.  Join us for the walk in person or by plastic–I’ll take support however you’re willing to share it.  For your preparation, I’m a total wreck the day of the walk, but I show up.  I do my best for my kid, WHO, by the way, is getting better by the day since his close encounter with black ice.  Navigating slowly, but better with appropriate medication, time, heating pads, and some kickass get well swag from Nikki, Dena, and Ann–how I love you all–has helped.  Physical therapy begins next week.  Fingers stay crossed!

And?  If some cute little Cub Scout or Boy Scout visited your door this morning, tying a plastic bag onto your door latch?  Fill it up, won’t you?  You have an entire week until those same youngsters will be roving your neighborhood to retrieve the bags, hopefully filled with non-perishables next Saturday.  Let’s show them we’re better than one bad apple.

And? No. I still haven’t paid the bills. *sigh*

A Block South of Petrified

Stopped just short of petrified is how I feel about the full day of school my son faces tomorrow.

Hello October.png

The world has again shown us its kindest, most compassionate side while my boy has convalesced this past week.  Tomorrow?  I am not sure he is ready, except he has to be; I am not sure I am ready, except, being the adult, I have to be too.

Whatever it is you do to send good vibes out to the universe?  Please do that for my son Monday, won’t you?  I don’t know another way to describe his gait and posture but that of a 70 degree angle from the waist up.  He’s like the right side of a capital “Y.”  OK, I guess do know another way!  He’s stepping gingerly, oh-so-slowly, but he is moving on his own with the help of his pediatrician, an orthopedic specialist, a badass/compassionate PA, the right meds, and well, inertia.  A body in motion tends to stay in motion and all that.

My husband has been an exemplary physical therapist/cheerleader/motivational speaker/pill dispensary/personal health aide for our son.  He’s made our kid get up and at ’em (relatively speaking, of course), forcing him to maneuver outside his comfort zone of flat-on-his-back-in-his-bed.  I believe my husband has missed his true calling.

This last week has been a challenge for us all.  Though not the one who sustained the serious injury, I am weary.  As I watch my son fight to complete such daunting tasks as, oh, let’s say stand up or sit down, requiring midday naps (yes, naps, plural) to recover from the exertion, my maternal anxiety meter is pinging in the red.  How is he going to spend a whole day at school?  Can he possibly spend a whole day at school?  At what time will I get the “Come pick me up?” call??  How will he make up the three tests, myriad assignments, and Solo & Ensemble competition he missed last week, and under what time frame?

I can solve none of these problems for him; he’s on his own at school.  I don’t need to be reminded that’s how it’s supposed to be; I know. *sigh*

 

 

Channeling My Inner Shirley MacLaine

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

Helpless

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

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

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

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

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

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

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

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

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

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

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


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

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

Dear Theodosia/My Shot

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

–Dear Theodosia, from the Hamilton Original Broadway Cast soundtrack

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

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

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

Gym teacher:  Can he do a push-up?

Me: No

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

Gym teacher:  Can he jog?

Me: No

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

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

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

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

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

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

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

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

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

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


Who Lives, Who Dies, Who Tells Your Story

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

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

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

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

 

Wings

Wheels, actually.

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

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

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

T: “$170”

Me: “Oh, hell no.”

T: “Too much?”

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

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

And off he went.

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

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

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

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

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

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

Polar Vortex

It’s the fifth consecutive school day off.  In case you’ve been living under a rock, a boulder really, you know it’s downright frigid here in the Midwest.  Baby, it’s cold outside.  It’s cold inside too.

The frost is inside our kitchen. Inside!

When my babies were babies, Jody, their day care provider would usher them into her house with the warning that if they didn’t hustle, they’d “freeze their frips off.”  To this day, the exact meaning of “frips” remains a mystery to me, but I will guarantee that whatever frips you have would become fripcicles in an instant this week.  Bars are beer delivery are shut down.  IN WISCONSIN, you guys.  Delivery of the US Mail has been suspended, and workers whose jobs take them outdoors, like my husband, have been given the option to take vacation time instead of repairing streetlights, which this week is essentially a suicide mission.  Some vacay.  Well at least he’s still got his frips!

Cabin Fever has begun to set in however.  Ennui abounds (or lies there doing nothing, more accurately), and even my children, slaves to their electronic devices, want to go back to school.  They miss their friends.  That biology exam keeps getting pushed back, which sure, means more time to study, but let’s be honest about the fidelity of that process. . .  YouTube has lost some of its luster, and even my dear, dear roommates, the boys’ best TV friends, the Impractical Jokers guys, are enjoying a brief hiatus at Chez Weir.  Summer vacation is different–even when it rains, you won’t die going outside–there’s always somewhere to go, something to do.  You know the fever’s bad when the kids want to go to school.  And NOT until the end of June.  I’ll be curious to see how many of these days will be required to be made up and how the district determines just how it will make them up.

There are myriad activities to enjoy, or if not enjoy, then just do, when you’re housebound though.  I thought I’d share with you a few of the ways we’ve been passing the time this Polar Vortex.

  1. Yoga: I rolled out my mat Tuesday morning, and before I could remove my socks, my idiot dog had commandeered my mat, laid out, covering the whole thing in what I call his frog-dog position. *eye roll/sigh*  Caleb is better at downward facing dog than I am, but that’s only because his snout is in my face while I breathe deeply seeking zen.  Idiot.  I love him.
  2. Watching Bosch on Amazon Prime: I’ve faithfully read the entire Harry Bosch series from author Michael Connelly as he’s cranked out each volume, though ’til now have avoided the screen adaptation.  I’m one of those “it’s better in my imagination” types so I’ve stayed away, but they’re worthy mysteries.  I enjoy Titus Welliver’s embodiment of Bosch, and I like how the series has updated some of the details to lend a modern feel.  I love that Bosch remains an vinyl LP-spinning, old-school jazz guy, and that not every actor is a perfect physical specimen. I mean, they’re all TV-pretty, but not unbelievably so.
  3. Culling through stemware: As a rule, I’m a moderate-to poor housekeeper.  We don’t live in squalor, but I suck at making things pretty, and this includes my ability to display china and crystal.  I ditched three mismatched wine glasses (I’m guessing each the lone remnant from a one-time set of four), a couple vases and two candleholders. I purchased that Marie Kondo hold-onto-your-shit-and-see-if-it-sparks-joy book four years back.  It sat, spine barely cracked, on my nightstand every day since until I finally gave it to a coworker just last week.  You’d have to strap me down and tape my eyes open to make me watch the tidying up show.  Just not my jam.
  4. Culling through greeting cards: There is an excellent reason to keep some of these missives.  You’re reminded just how spectacular others believe you to be, even if only for a brief and shining moment.  It’s a happy stroll down memory lane mostly, with a few bittersweet moments–like the transition from the kids’ birthday cards being signed ” With love from Gramma Terry and Poppa” to only “With love from Gramma Terry.”  I held onto all our wedding cards, the welcome baby cards, and a few sympathy/support cards from when the big kid’s diagnosis was handed down.  I say this all the time, but you wish you had the friends I have, you really do.
    img_3065

    In an example of my poor organizational strategy, I unearthed this photo, stashed in the greeting card drawer. Awwwwww. This is truly one of the best-ever photos of the tall one! So pure.

  5. Family Game Night:  There is nothing like a game of Sorry or Uno to learn exactly where family allegiances lie.  It’s generally agreed that the individual producing the highest volume of sass and trash-talk (my husband) is the common enemy.  I’m a little disturbed though at my children’s ease and delight in throwing down a Draw Four or Sorry card in my direction though.
  6. Reading a couple Harry Dolan books:  The two I’ve read are set in Ann Arbor, Michigan which is where my friend Kristen used to live.  According to her, Ann Arbor is cool (I’ve visited only once and had a lovely, murder-free experience), collegiate and literary like the novels, but not as vibrant with intrigue and killing.  Thinking about Kristen makes me think about how we met, through Barenaked Ladies (she, an uber-uber-uber-uber fan and pretty cool chick otherwise too), so there’s a totally weird connection that in all the world can only be made in my brain.  Then you can while away a surprisingly large sum of time thinking about the upcoming summer Barenaked Ladies tour, and the fact you’re not going.
  7. Baking a really shitty cake: You know those Pinterest pins and Facebook videos that suggest you can make a box-mix cake taste like a bakery cake if you simply add an extra egg, substitute milk for water, and melt butter?  DO NOT DO THIS.  Well, don’t do this unless you want a cake that rises, then settles like a brick.  We legit laughed out loud after we let it cool.  The “cake” did not retain even one inch of its height.
  8. Cleaning out the spice cabinet:  I have an entire kitchen cabinet of spices, not just what one might consider a spice cabinet, but a wall o’ flavor.  After our kitchen remodel, I organized them alphabetically, sorted by cooking vs. baking spices (nerd, and FYI, my closet is a rainbow, sorted by color).  Naturally, spice blends like Montreal Steak Seasoning, Emeril’s Essence, or Garam Masala occupied their own shelf.  Over time, I’ve come to just toss them back in (see Number 3 above for my statement about my housekeeping prowess), but now I’m good for another two years or so.
  9. Public Library Time:  I love spending time at the library, just hanging out, browsing amid the shelves.  I took the kids before the deepest segment of the deep freeze kicked in and the city closed the libraries.  I think about library patrons whose only warmth comes from an open public space, such as what libraries provide, and think I’m not as grateful as I should be for the good fortune of a thermostat.  And the house the thermostat serves.
  10. Preparing for my dog’s girlfriend’s birthday party: I’m just going to close with that entirely true statement here.

The one thing I absolutely cannot do is catch up on the mountain of work that was already a foothill of work before these days off.  When I left work last Thursday, I never in my wildest dreams believed I’d have a week off.  I can’t access any of my data, observation notes, or historical records from which to draft my reports. They are locked up nice and tight, safe and sound in my desk.

My kids wanna go back to school, a big enough shock to stand on its own merit, and *gasp* so do I!

Five Cents, Please

Nine-to-fourteen inches of snow was the prediction.  Grocery lanes were jammed with customers stocking their larders (if larders were a thing in 2019 urban Milwaukee) with the necessities a snowpocalypse demands.  Cancellations flurried in late Sunday afternoon, then dumped en masse and at the speed of light.  Kids rejoiced, then made a mad dash for sleds and snowpants.  School district superintendents pushed their social media campaigns for the most clever delivery of snow day school closings (the dude from Missouri Valley wins all, this week or last, hands down).

I was delighted not to have to set an alarm this morning and I’m relieved not to be navigating snow-covered, ice-crusted roads, not gonna lie about that, friends, but I expected more from “thundersnow.”  Though it’s picking up again, I believe they oversold it.

I spent a too-short weekend partially prostrate on my friend Ann’s couch.  Too short in part to my eagerness to avoid the impending doom of the snowpocalypse.  I really have become a wuss as my years on this earth advance.  Maybe I’m smarter too, but mostly, I’m much less a risk-taker than I once was.  Hoping to avoid an early arrival by Mother Nature, I hit the road before noon Sunday.

83df781536d2f67fdb388e148298036e-peanuts-cartoon-snoopy-peanuts

Thank you to the inimitable Charles M. Schulz for his colorful characters with character.

In my little Peanuts metaphor, Ann is Lucy Van Pelt, dispensing psychiatric advice, and yours truly stars, or slumps really, in the role of Charlie Brown, trying to make sense of my anxieties.  I write about stuff here, but there, on her grey couch resting my head on the most calming, nuanced shade of coral accent pillows, is where I talked.  I won’t bore you with the details, but voicing the words, “I think I bordered on depressed for a few days” was cathartic.  Saying those words helped me realized I’m already rising through, returning to equilibrium.  Five cents, please.

Other thoughts from the couch. . .

Botox

No, I haven’t gone under the needle, but twice since Saturday and with two different friends, it’s come up.  My BFF just had bangs cut into her naturally platinum spiral locks–“cheap Botox” she claimed.  I wear my glasses more frequently, masking those deep, deep, deep furrow lines between my brow with chunky tortoiseshell frames.  I thought the laugh lines would be the most prominent as I aged, but it would seem I’m less jolly than I imagined myself, my face wearing worry or anger more often.  Boo.

I once proclaimed that I would NEVER consider plastic surgery.  I was 35 then, the hell did I know??  I am vain though, and I probably would shoot my face full of toxins if I weren’t terror-stricken that I’d become paralyzed, or worse, dead as a result.  I like my smile lines–wouldn’t change those.  And no, my lips aren’t as elastic as they’d been, but who wants to look like any one of the thousands of “Housewives” along with other celebrities, barely recognizable as humanoids anymore??  I mean besides the thousands lining up every month at their plastic surgeon’s office.  Stop the madness, ladies!  And gentlemen, for that matter.

The Next Revolution Renaissance

In education, we endure cycles of pendulum swings. In 2019 THIS is what’s best for kids, we’re told.  You’ve been doing it all wrong, y’all–THIS [insert new thing here] is the best approach to learning.  Stick around long enough and you’ve heard it all–Whole Language, Direct Instruction, Site-Based Management, Multiple Intelligences, School Choice (let’s just DON’T), Learning Styles, Problem Solving, Understanding a Framework of Poverty, Differentiated Instruction, Whole-Small-Whole Group Instruction, Full Inclusion, Common Core State Standards, Standards-Based Grading, Trauma-Informed Care, Social-Emotional Learning, Interventions, School-to-Work, College and Career Ready, Mindfulness, Every kid gets a Chromebook!  Geez, my fingers need a break from just typing!

Ann and I observed how the pendulum’s swing hasn’t quite returned to the opposite arc–instead it’s pinging at a near 90-degree angle.  When will we inch back to what teachers know actually works?  When will pedagogy be stripped from politicians and big-money publishing houses to be returned to teachers, you know, the ones who teach??  What will it take?  I used the term revolution; Ann more astutely remarked that we are lying in wait for the next age of enlightenment, the next renaissance.

I sometimes feel that my children are part of some half-assed social experiment.  Their time having been enrolled in formal education has seen more changes than in any period in my career. I eagerly await this Renaissance.  I’m happy this neo-Renaissance of which I dream comes with indoor plumbing and vaccinations though.  Science is real, yo.

Politics and the Government Shutdown

Nope.  Not touching it.  You know me?  You know where I stand.  I thank my lucky stars that I have Ann’s grey couch to dive deeply into ideas and ideals.  And lunacy.

Transgender Individuals

My son related to his father and me a conversation he’d had with a friend who is transgender about this individual’s identifying with the gender opposite the one at birth.  My son was working out the pronouns, and what I loved most about this chat was that his friend being transgender was really a sidebar to matter of this friend bringing “Cards Against Humanity” and “What Do You Meme?” to play during some free time after school, about which he was deeeeeeeee-lighted.  Those games are so inappropriate.  So stinkin’ funny though, and let me be your cautionary tale–they’re not games kids want to play with their parents nor parents with their kids.  I’m still blushing. . .

Brewers On Deck

My baby, the 6′ thirteen-year-old multi-sport athlete, through his baseball organization, had an opportunity to attend Brewers On Deck.  On Deck is a massive fan fest where Milwaukee Brewers baseball players are made to make themselves available for a day-long meet and greet.  Fans wait in line for autographs and photos.  The event sells out annually, and with a tuxedo-clad Christian Yelich having just received his MVP award the night prior, the kids’ entry was a premium!  The kid was ready to go, but begged off at the last minute.  He had a chance to meet his idol, Travis Shaw, but declined.  I’m told he crashed the boards and crashed his knee Saturday morning during his basketball game, so wasn’t at top form physically.  I can’t help but wonder if he has a touch of his mother’s anxiety though–he was petrified to meet Barenaked Ladies (granted, he was seven at the time) and he didn’t feel like it was OK to approach Alan Doyle after a show in Chicago a few years back either.  I think he’s an “I’m gonna admire them from afar” kind of guy.  Not that there’s anything wrong with that; there’s not.  But I don’t want him to throw away his shot.

2019 MDA Muscle Walk

Yep, I’m already ratcheting up about the timing of this year’s walk.  My younger son has a baseball tournament out of town that weekend, so I already know my husband and I are going to have to split time.  This year’s event is June 1, scheduled with hopes of warmer weather prevailing on walk day.  My son is “lucky” that his MD doesn’t come with the side dish of massive internal complications that many kids with MD endure.  But now I’m prematurely anxious/guilty about picking.  In missing one or the other, which child will be deemed  or feel more “worthy” of my attention, will all of us have all the right gear in the right city?

Anxiety is dumb.  But that’s the thing about anxiety–it’s worrying about something that might never happen.  But that doesn’t mean you don’t worry; you can’t help but worry.  It’s the very definition of anxiety.  I know I’ll be at the Muscle Walk, so why is this even a thing?

Probably I’ll figure that one out on my next visit down to Ann’s.  Miss you already, sweet girl.

You May Take The Floor

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

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

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

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

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

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

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

Stay tuned, friends–I’ll be back.