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.