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.

 

Advertisements

Ghost In The Graveyard

I slept poorly last night.  Three times I nodded off while reading my book, set my glasses and novel on the night stand, then promptly popped right back into full consciousness.  That hazy space between barely awake and bizarre dreams was highjacked by mom guilt, until mental exhaustion finally won out around 1:45 or so.  If cerebral activity could be measured in distance, I probably mentally marathoned last night.  Maybe ultramarathoned.

The kids went camping, cabin-ing to be precise, with my super cool friend whose bravery is a blog post all her own.  She drove her son, my two and two other boys to a riverside cabin in south central Wisconsin.  Being the “I love not camping” girl I am, I not-at-all subtly avoided volunteering to go with them. My husband got stuck covering second shift, and I was looking forward to some Saturday evening alone time–a little Meijer shopping junket, Orange Is The New Black (My heart is still not 100% into the fifth season though I really want still to loooooove it), and a dinner of popcorn, ice cream, and Blue Hawaiians.  My friend Jane texted me as I browsed health and beauty, did I want to hang out?  I replied with my dinner menu, confirming that I was entirely serious about “dinner.”  Unfazed by my blatant disregard for nutrition, she drove over anyway.

Chatting outside on our patio late Saturday, solving the world’s problems in the cool, evening breeze, Jane heard our landline ringing.  “Is that your landline?” she asked incredulously, like, “it’s cute you still have a landline” and I was like, “Oh, it’s 10:00 and our phone is ringing?  That can’t be good.”

It wasn’t.

I then grabbed my cell phone, which was set to Do Not Disturb mode, and noticed a call from the same number.  I didn’t want to be one of those, “Did you call this number?” people, because wrong numbers happen, you guys, but with a call to both my cell and home phone, I thought I’d better do some investigative work.  I called the number back.  My son answered, frantic.

They had been playing Ghost In the Graveyard, he whimpered.  “What I didn’t see was the tree stump” over which he tripped and was propelled into a tree.  It hurt really bad, and he had to stay inside while the other kids were sitting around the campfire making s’mores.  In perhaps my single worst parenting decision ever, and folks, there are several on my highlight reel, I asked if he was more hurt or disappointed.  I honestly believed he was more sad not to be in there with the rest of the guys, that he felt excluded, and that disappointment was more painful than the pain.

My son’s pain tolerance approaches the preternatural.  Muscular dystrophy means he falls a lot, crashes into things–walls, furniture, all of the things–more than your average klutz does, and he never complains.  I’ve seen him crash hard, get up and dust himself off, and keep plugging.  Thinking about how bad those incidents have to hurt makes me feel like I have to vomit sometimes.  It’s that kind of pain I see him endure with regularity.

I cried along with him on the phone, angry at muscular dystrophy for making him less agile and nimble, for taking away his ability to maneuver at speed of life.  I agreed, it sucks, kid.  It’s unfair.  No argument.   I talked him through some deep breathing via telephone, believed that hearing his mom’s voice and a few ibuprofen were calming enough to get him over the hump.  I did ask if he wanted me to come pick him up, which he considered then declined when the rest of the kids came back inside from the campfire.  Watching Ghostbusters, the original one, and receiving a s’more another kid made for him, was medicinal enough.

My friend got on the phone, confirmed that he could move his arm, and agreed with me that some of his pain could have stemmed from not being in there with the rest of the guys.  NOT that he didn’t smack the living hell out of his shoulder, ’cause oh, did he ever!  But did I need to come retrieve him?  Probably not.  I agreed.

How many ways could I have been wrong? Let’s start here.

My husband and I go pick him up last evening around 7 PM.  He’s clearly favoring his left arm, proceeding gingerly, but slings his backpack over his right shoulder, grabs his pillow, and lurches over to our car.  He has that boy with bruises/chicks dig scars false bravado, admitting though that his shoulder does hurt.  At home, I help him remove his shirt to get a look at the abrasions and bruises.  We–my husband, son and me–decide to call his pediatrician first thing in the morning.  The bruises are gonna be spectacular!  But then we notice a slant, real asymmetry in his shoulders, and I see his scapulae are not even.  Not at all.  “Did you brush your teeth today?” I inquired.  “No?  Let’s go do that.” Less than an hour after his return home, we cruise over to the emergency room.  They can take my $100 co-pay and tell me he’s fine, but I think he’s maybe less fine than I initially hoped, and I thought he should have fresh breath for the occasion.

I cannot say enough about the emergency medicine department at Children’s Hospital of Wisconsin.  We were the fourth family in line when we arrived to sign in last night.  In classic I’m such a jerk form, I texted my husband, “F-word.  There’s like 4 families ahead of us just to check in.  We won’t be out of here til tomorrow.”  The ER is where many uninsured families wind up for routine or urgent care needs.  A sign posted at the ER’s entry states that every child and family has the right to emergency care, regardless of ability to pay, insurance or Medicaid status, so the kids in front of us with maybe ear infections and coughs would be sure to get the care they needed.  Underserved and underinsured children populate probably 80% of the school district in which I work, so I understand how so many sick kids wind up in the ER rather than at a pediatrician’s office.  I don’t want to make any assumptions, but you can’t help but overhear the answers to the intake staff’s inquiries:  stomachache, cough, “not herself” were mentioned.  Urgent care issues to be sure.  But this is not a treatise on the status of  health care inequities in the US.  Many more learned people are writing about that very thing all over the internet these days.  Read those; they’re better.

I believe we’re in for the long haul–we brought books, phone chargers, and Tom even packed us snacks and sandwiches for our ER picnic.  But then I become reacquainted with the term triage.  Though I was unawares, the medical staff knew when we walked in what his diagnosis was; in hindsight, I recognize how they hurried us through.  From start to finish, we were in the ER for 75 minutes.  From “Date of birth, any allergies?” to “Your pictures are in.  Your clavicle is broken in two places” to “Call your pediatrician first thing in the morning” took only over an hour.

Broken bones put you ahead of ear infections in the triage conga line.  It’s really the only time you hope, but you don’t really hope for something more serious.  My son’s collarbone is broken in two places.  When the x-ray came in, I pulled a total Wendy:  “Holy crap, kid!!!”  And I got the giggles telling him he did a real number on his shoulder, all right, as we viewed his insides.  The breaks were unmistakable.  Unmistakable.  Like tectonic plates shifting up creating mountains unmistakable.  He laughed looking at the image too, but pretty quickly acknowledged, “I don’t know why I’m laughing.”  I believe we call it “nervous laughter” kid.  Funny/not funny/need a release/yeah, that’s it.

Though I didn’t relish the thought, I had to tell my friend that his collarbone was broken, and I knew she’d feel terrible.  She does.  It’s not her fault, not her anything, and she has always had a very squishy spot for my kid, for them both, which I love.  There ain’t no way I’d have taken four boys camping, and I am so happy she included mine.  Because kids love camping.  Me?  I love not camping.

The stripes are supposed to horizontal, not diagonal

 He made it thirteen-and-a-half years before visiting the ER, so hey kid, thanks for an amazing run!  It will be some time before I allow myself not to feel guilty for not hopping in the car Saturday night.  I apologized to him over and again as we walked back to the car from the ER–I should have intuited.  Aren’t moms supposed to sense this stuff?  How did I NOT know?  I would have driven to the ends of the earth to come and get you if I’d known it was a broken bone.  It will be some time before I figure out just how this immobilizer thing pieces together.  They don’t cast clavicles–so your ER visit is brief by comparison, but I have to assemble this contraption for him.  I’m terrified.  I can’t even wrap a gift decently, and I have to wrap up my kid’s arm and shoulder to protect him.  Aaaand I’m pukey again.

This kid?  He’s so tough.  He is tougher than you, I bet.  This pain should have just about knocked him out–it would have taken me down.  He told several ER staff what happened–they do that, several people ask several times to check for consistency of stories–and the crash went down exactly as I had imagined it did when we spoke on the phone Saturday night.  But I had no idea, NO IDEA, how much badass that kid had inside him.  He’s a rock star.

He’ll need some help, but it’s already been inspiring to watch him triumph over this immobilizer.  He works so hard when he is made to, and I never caught this perseverance in him until the MD diagnosis.  Today it’s all I see: strength over adversity.  I’ll probably have to help him shower, which he’s not super looking forward to, but we did share a little Barenaked Ladies moment over it:  “You think you’re so smart, but I’ve seen you naked, and I’ll probably see you naked it again.”  He laughed, maybe a little nervously, but genuinely too, which hurt him and stung me too.  The line is a lyric from the song Blame It On Me, and friends, I own that blame.

Broken hearts (mine) and broken bones (his)