What Is Your Biggest Fear For Him?

I hadn’t considered this question in some time, but a few weeks ago, before parent-teacher conferences at our school, a colleague I don’t often enough get the opportunity to speak with often asked me this question.

I am certain that I fell into my now-common middle distance, eyes up and then to the right gaze, and sighed in contemplation.  I guess that has become my “I’m thinking” preparatory set as I deliberate the big stuff.  I considered options for the few moments the normal flow of conversation allows.  I began to give voice to something, stopped, and began anew.

“I guess I am most worried he won’t find a mate.”

My colleague, one of the quickest wits of our time and a genuine all-around decent guy, replied, “Yeah, but doesn’t everyone worry about that for their child?”

“Yes, I suppose you’re right, that’s true,” was my not-at-all snappy comeback, looking up and to the right again, “but he’s going to take so much more time.  He’s going to have to find someone extra-special, someone so patient, someone who will help him, who will wait for him.”

I can’t quote the rest of our talk, but I remember telling him I worried for the day my son wakes up and isn’t able to walk.  Something he does now will become something he never does again, and while that is true of each of our children, each of us for that matter, I know my son’s trajectory is a little more direct and brief.  I’ve recorded what I believed was his first last, the rock climbing wall, and though it was the first last, it is certainly not the worst last.  The thought of my child circling a day on the calendar, marking the first day he can no longer walk, is simply too much.  So I don’t think about it.  Much.  As much.

Last week the world learned that Stephen Hawking had passed away, decades after his disease suggested he should be crossing the finish line.  Decades!  I felt like this quote from his brilliant mind was a beautiful fit for what had been racing laps around my grey matter.  He hit all the right notes in this bit of advice to his own children, and I’m going to remember it for mine too.

for her outstanding and excellent performance atDenver Annual Fashion Competition. Given this12th of April, 2019 at Roanoke, Virginia. (1).png



Verbal Diarrhea

Saying “verbal diarrhea” sounds comical.  In writing, the phrase looks vulgar, but who am I kidding?  I’ve considered an alternate title, yet this phrase succinctly and correctly captures my crass, adolescent-dude-masquerading-as-middle-aged-mom to a tee.

I own the affliction.  The shoe fits and all.

The Muscular Dystrophy Association’s summer camp director emailed me a few weeks back, asking if I’d be willing to share our family’s MDA story, to share what camp has meant to my son and/or to us.

I loathe asking for money (but PLEEEEEEEEEASE donate to our 2018 Muscle Walk campaign by clicking here).  The list of things I’d rather do than solicit donations for our Muscle Walk team covers more linear feet than the distance from the earth to the moon, but I can write and I can talk.  So, after joining the MDA “family” three years ago, I finally went to a family hoe-down.  And by hoe-down, I mean business meeting.  MDA staffers from around Wisconsin met to kick off this year’s camp planning, and asked me to toss in my two cents.  Everyone introduced him- or herself, so I knew who to thank, and that is how I began: with thanks to them for their work on behalf of individuals afflicted with crap muscle disease.

I think I was meant to be inspiring.  Stop laughing.  I can hear you over here, you know.

I was decidedly not inspiring, but I did share our narrative.  Not knowing my audience ahead of time, not knowing how many people would show up, I did not prepare any remarks.  You speak differently to a group of ten people around a table than you do in front of an audience of a couple hundred, so I flew without a net.

We have a story, and my recitation of our story feels and probably sounds like a script.  I don’t know if that’s what they wanted of me, but that’s what I related: our story.  I talked about how we came to learn about MD–how an offhand “It’ll probably be months before they get you in, so don’t worry, it’s just a rule-out” became “He has an appointment with Children’s Hospital Neurology on Wednesday.”  I said, “You’re all lovely people, but I wish I didn’t have to know you.” (and no, I didn’t use the f-word because I used to say ‘I wish I didn’t have to effing know you,’ but they invited me, and you don’t use the f-word in a business meeting.  Usually.

I explained that immediately following the diagnosis, I took to the internet to chronicle my feelings.  It wasn’t shameless blog promotion, because really, my blog hits a pretty boutique market–I’m not for the masses, I get that–I didn’t bring it up to ask them to read it.  I brought it up I guess because this blog has been my companion since that horrible January day.  Nearly every MD revelation that’s floated through my cortex has found its way here.  Three years later, I’m still Greater Than Gravity-ing.

And now I can add talking too much to my MD mom experience.  The members of the group with whom I spoke were gracious and attentive, but I couldn’t shut up.  I just kept pushing through my narrative, kept talking, staring off into middle distance too often probably.  I wanted to tell them exactly why greater than gravity, but that wasn’t part of the script I didn’t know I had followed I guess.  But that’s it!  Love.  The love I have for my child, the mama bear love that makes me have to write so that I can deposit all the marbles rolling loose in my head and be present for him.  Love.  It’s greater than gravity.  Betcha Ed didn’t know how much that, or any lyric would possibly come to mean to anyone when he wrote the song.  It’s dumb if you’re not me.  I know, it’s OK.

Muscular dystrophy is my kid’s story, not mine.  My story is how I became an unwitting blogger after learning my child had a progressive, terrible disease, and how this unintentional blog has become my confidant.  Since the patina of shock has now been dulled by three years’ time, I don’t write about MD every post.  But I have this collection of 200+ stories about parenting two boys, public education, my friends, Barenaked Ladies, baseball, my squishy-faced, sock-stealing idiot rescue dog (whom I LOVE), and kitchen remodeling.  I wonder how bonkers I’d be if I hadn’t written this all down.

Through my collection of tales, I’m given opportunity to thank those people who matter tons to me, and I’ve been able to educate, inform and yes, raise some money for the MDA, so kids like mine can find where they belong.  Even if it’s only for a week, it’s A WEEK.  You just don’t know what that means, to find your home.  For my kid and too many others?  It’s greater than gravity.

They asked me to read the letter I wrote to the camp counselors last year and I did.   I didn’t even ramble on.  I didn’t even ugly cry.  It was hard, but I did it.  I can talk and I can write.  I may not be a top fundraiser this year, but I did a good thing.

Leather Or Crystal?

For the first time since learning our son has MD, I didn’t wake up on the unhappy anniversary date with “diagnosis day” screaming at me.  I walked the dog before dawn, brewed a cup in the Keurig, leafed through the Sunday coupons, when BOOM.  It hit me.

I feel some insane pull of duty to mark the occasion.  That’s ridiculous, I’ll grant, but I’m big on anniversary dates.  Until this year, I’d counted down the hours leading up to January 21, not because I enjoyed that, but because I was consumed with MD.  Maybe this is a sign of my growing acceptance, erosion of the initial shock has dulled the blade stabbing my heart.  January 21, 2015.  THE day.  The day that began the after.

I don’t know.  Maybe it’s the myriad other tasks and responsibilities served on my already heaping plate this week.  I’ve been cleaning up a mess–a hot mess, a ghost pepper/sriracha/cayenne/scotch bonnet kind of hot mess at work.  It’ll be but a distant memory in a month, but for now, my full time job is made to take a back seat to accommodate this other full time job.  Not that I get a pass on my actual responsibilities–it’s not that those tasks have disappeared, no, but this clean up occupies so much of my cortex that I can’t even.  Ah, I can’t even finish a sentence with a verb that fits adequately is how much I can’t even.

I’m starting another school therapy assignment tomorrow, and until a few minutes ago, didn’t even know my students’ names, grades, or disabilities.  I’m super good at winging it, but I want not to wing it.  The kids deserve better than that on their new “speech teacher’s” first day.  (It’s in quotes because I’m a speech-language pathologist, but no kid has ever referred to me as speech-language pathologist.  Hell, these days, if kids aren’t referring to me as that old lady white bitch, I’m calling it a success.)  Anyway, it’s unlike me to feel unprepared, and for the first time in five years, I admit to feeling a bit anxious about a new assignment.  It’s probably because I’ve not buttoned up my previous assignment.  See previous paragraph.

I told a colleague Friday that “being me is exercise.”  She laughed, because I’m usually rife with hyperbole, but the truth is that my workweek last week and all the stuff I have to do causes my heart to race.  My Fitbit read about 100 beats per minute just sitting at my desk, organizing, scheduling, calling, emailing, writing.  My resting heart beat when I’m not insane is about 60.  Our district is pushing a mindfulness agenda, and while I’m all for self-care and trying to focus on success and forward-thinking-ness, my workload at present gives not one tenth of one percent of a shit that I’m harried.  Mindfulness, you can suck it this week, thank you very much.  Check back with me around Valentine’s Day, m’kay?

I think I shall choose to look upon this work-induced “Welcome to MD” memory lapse as a gift.  The gift of forgetting, or at least not springing from my bed sheets laser-focused on the big anniversary, is something I should be pleased about, right?  Two of my friends and another family acquaintance lost one of their parents this week.  I feel like a schmuck for having missed one funerary visitation, but I was teaching a class scheduled months ago and I just couldn’t bow out. Within the last two hours, my younger son and I returned from a second visitation; I’m so relieved not to be planning the funeral of one of my own parents.

I just completed my reading of Evicted by Matthew Desmond, and I should be jubilant that I have stable housing in a reasonably low-crime neighborhood.  Evicted shall stand as a post on its own to be explored soon–it’s a horrifying ethnography of poverty and housing inequities in Milwaukee.  I am jubilant that we can provide a roof over our children’s heads, and that I can let them play outside and walk to school without constant supervision.  Or abject fear.


There are wiser ways to be spending a dreary, dank Sunday than forcing myself to feel something specific because it happens to be 1,096 days since I crumbled for the first time.  HE is marking the occasion, as always (I think anyway), blissfully unaware.  I’m gonna follow his lead.  I’m going to lay my head down on this pillow Nikki sent me yesterday and read.  Gonna read something light and airy–you know, murder, mayhem, lawyers, and detective-y types–no more nonfiction for me for awhile.  My personal nonfiction is enough, you guys.  I’m always transported while reading, and whether I’m transported to the nineteenth century, World War II-era Europe, western Pennsylvania, or Stockholm, Sweden, I’m going to distract myself, because yeah, now that I’m thinking about it, it’s all I can think about.

The traditional gift for the three year anniversary is leather; the modern gift version is crystal.  Since it’s not the 80s, I don’t own much in the way of leather accoutrements, but I do have beautiful pair of crystal wineglasses.  Now the only real anniversary question is this:  red or white?



Have you seen the Netflix series Atypical? My husband and I watched the first three episodes last night and we are both in love. We are both in admiration and appreciation anyway; I’m probably alone in declaring love at first sight. The series chronicles a family whose teenage son has autism, whose teenage daughter is both begrudgingly and lovingly, fiercely protective of him, and the relationship of the parents as they ride the whitewater rapids of life with a child whose disability makes parenting and marriage more challenging than it might otherwise be.

Elsa, played by Jennifer Jason Leigh, becomes especially troubled as her son decides he wants a girlfriend. She defines herself as “Sam’s mom,” his strongest, most intense advocate, and finds as her son is maturing, his need for her control over every variable in his life is diminishing. She is a control freak who thinks she has done all of the right things to help her son find his way in his world. Maybe she has, probably she has, but he’s reaching out in new directions, toward more sophisticated horizons. She is struggling, unsure of her very identity absent her starring role in her son’s life.

I love the character Sam, the eighteen-year-old protagonist, I adore his father, and his big sister, Casey, is simply freaking amazing! As we were watching last night, I asked my husband if he recognized shades of me in the character of Elsa (*spoiler alert* minus her dalliance with the hot, waaaaay too young bartender because obviously I’m not combing the bars seeking that type of attention). To his everlasting credit, my husband responded instantly sporting an expression of utter confusion: um, no, you’re not at all like her.

When I began blogging, my son’s diagnosis of muscular dystrophy was all I could think about. All. I. Could. Think. About. MD became my full time job; my coronation as Empress of My Son’s Diagnosis was immediate. I GET Elsa. I get who and why and how. (Though I don’t get the hot bartender fling, but I’m only a few episodes in, so I hope she does right. Five more episodes will tell that tale.)

I get how easy to define oneself, myself, as that mom could be.

But I hope I haven’t. I would hate to wake one morning to discover I occupy but one dimension.  Being an attentive mom is my full-time job, but I also want my children to see the many facets of my personhood, to grasp that their mom is the sum of her parts. I’m a mom all day, every day, sure. It’s the biggest gig I’ll ever get.  But it’s not my only duty.  I’m a goofball wife and loyal friend.  Nine months out of the year I am a baseball mom. I’m responsible for the success of many speech-language pathologists. I’ve got this knucklehead dog I am crazy about.  I like to cook, I’m a big fan of this one band I travel all over to see, I’m an avid reader.  But yeah.  I am the voice of muscular dystrophy in our household.  I sincerely hope that my children see me as more than that mom.  You’ll tell me if I begin to slink down that rabbit hole, won’t you?

Watch Atypical.  Not because I’m telling you to, but because it’s excellent, and it provides a world view with which most of you are unfamiliar.  The world is filled with perspectives; this provides a good one.

Happy New Year

In other news, it’s almost 2018.  I’m squishy sentimental over all these year-end retrospectives and the promise of the baby new year.  Receipt of a billing statement last week reminded me that I begin many a tale here, but lack follow through.  So, though I make no resolutions at the dawn of any new year, I resolve to resolve a few items here.  Clean slate and all just in time for the new year.

Go, Huskies!

Number One Son met the entrance criteria and was accepted at his top high school choice.  He’s a Husky!  Just this past Monday, after months of groundwork, seemingly endless waiting, and the anxiety of delayed notifications, he received his acceptance letter into Ronald Wilson Reagan College Preparatory High School.  I’ve not seen my son so proud of himself in well, ever. He did the entrance work, but the real work lies ahead. He’s going to work harder than he has ever known academically, and says he is up to the challenge. Proud mom.

Insurance Fail

I was royally unsuccessful in my bid to persuade Great Benefit Insurance Company to cover my son’s brain spectroscopy last summer. Despite consultation between our neurology clinic, the hospital’s billing department, and my insurance company, we ended up stuck with the entirety of the not insignificant balance. I still feel a little pukey when I think about it, but the money is gone. I’m over it.


One broken collarbone, one Little League shoulder, and one rotator cuff injury later, 67% of our injured family is healing as expected. I have come to grips with the fact that I will never be made whole again. A Cortisone injection followed by months of physical therapy was tremendously helpful, but not a 100% repair for my shoulder.

I head into the new year not with resolutions, but with resolve to remain in good health. It would be extremely easy to give in, trace an easier path, and waste away in front of a television, inert. But I am better than that, and I encourage you to be better than that too. Do something fun. Do something a little dangerous. Do something just a little bit outside your comfort zone. Do something to show the ones you love you’re more than the one thing you’re best known for. Defy what defines you. Be a little atypical.


‘Tis Better To Give Than Receive

Merry Christmas, Everyone!

Our family is not religious, we are of the secular Christmas card-sending/Nutcracker Ballet-attending/gift-exchanging/reveling in the joy of the season lot. Santa will not be shimmying down our chimney tonight, and I miss that magic we shared with our children over the previous thirteen years.

I have been positively gleeful this December. That is not hyperbole. I am late in my preparations, but a smile–sometimes broad and hearty, others sheepish as if to say, “Holy schnikes, I have a crap-ton to do. I’ll get there, I always do!”–has been a fixture this fa la la la la la la la la.

I received a gift yesterday. This gift came in the form of a check and explanatory letter. When you see shades of doubt slivering through the fabric of your faith in human decency, remember my friend and the story I’m sharing here. My friend is an intensely private person, so a few edits were made in order to respect that.  I will never betray the trust she’s put in me over the years.

Dear Wendy,

When I was growing up, my family always watched the Jerry Lewis Telethon on Labor Day weekend (confession-not really because of muscular dystrophy, but because there were only three or four channels to watch).  We tuned in to check out various performers and entertainment and made sure we watched the end of the show to see how tired Jerry looked after staying up all night.  We thought it was really cool and crazy that he didn’t go to bed all night long.  We watched him sing at the end of the show on Labor Day evening as every year they showed record breaking dollars donated.  Jerry always got emotional and cried while singing his closing song and he looked all disheveled with bags under his eyes, shirt untucked, hair a mess–we loved to make fun of him in our immature kid-style way.

One year, we decided to help raise some money for MD.  We took our red wagon and went knocking on doors in the neighborhood asking people if they had empty pop bottles that they could give us to return to the store for the deposit refund to raise money for MD.  When our wagon was full, we pulled it home and transferred the bottles to the back of the station wagon and went out to more neighbors.  When the station wagon was full, mom or dad drove us to the grocery store where we cashed in the bottles then we would go back home and repeat.  At the end of the day, we donated our daily profits to MDA.  We did this for years and I think of it fondly every Labor Day weekend.

I now also think of you and your family on Labor Day.

I have not donated to MDA since I stopped collecting pop bottles.  Jerry Lewis inspired such a fun family activity and obviously brought great awareness to MD.  With Jerry Lewis’ passing this year, I thought it was a good time to make a donation.

Please help my check find its way to make the donation.

I admire how you handle all in your life and can only imagine how difficult some days must be.  Your son is very lucky to have you for his mom.

I’m not crying, YOU’RE crying!  Of course I’m crying.  I read parts of her letter at least three times before I was able to finish because my eyeliner was running by the second paragraph.  What’s the right word for how my friend’s kindness affected me?  Touched?  Moved??  Ugly cried??? 

My niece Lauren, who after my son’s diagnosis became an MDA Summer Camp counselor, has now committed to the MDA’s Team Momentum for 2018. She will be running a marathon to raise funds, awareness, and hope for individuals and families with muscle disease. Half my friend’s donation will go to support Lauren’s marathon endeavor.  Click here to read about an amazing example of today’s youth.  Team Greater Than Gravity strolls in its fourth annual Muscle Walk this spring, so the other half will be the donation that kickstarts our 2018 Muscle Walk team effort. Donations made to the MDA before December 31 will be doubled, up to $100,000.  That’s a lotta marshmallows toasted around the campfire, friends.

My Christmas wish for you all? That you have the good fortune to be surrounded by goodness, light, and love.  I’ve never known a time where I didn’t find myself among good friends.  Because of my son’s diagnosis, I’ve borne witness to good friends doing great things.  Still not grateful exactly for MD, no, but for the goodness and light it has illuminated in others?  That is my gift.

It’s Christmas Eve and it’s snowing.  And that is the lesser of today’s miracles.  Thank you.



Flying Dreams

Every so often I get stuck in a song.  Every so often I get stuck on my son’s disease. Every so often these sticky situations intersect.

Below are the lyrics to Flying Dreams,  written by Kevin Hearn.  I’ve met Kevin a number of times, and he’s always been kind and sweet to my superdork, inappropriate fangirl self.  When we spoke last summer, I made sure to tell him how much I appreciated some of his artwork, and one picture in particular.  The drawing depicted a girl I presumed to be his daughter in a wheelchair.  His daughter has a developmental disability, and as you know, children with special needs are near and dear to my heart.

My son has a neuromuscular disability,  and I often find myself seeking distraction.  Obsessed has such a negative connotation; I’m not obsessed with MD, not like I once was anyway. My son’s disability is mild they say, and his doctor is pleased with his lack of progress.  In his case, a lack of progression is a good thing!  Still, it’s never not one of the top five things on my mind.  In the narrow-mindedness of muscular dystrophy blinders, I sometimes find myself looking for connections that aren’t there. Sometimes I find them.

If you could walk, if you could talk
Where would you go, what would you say to me?
I love the sound of you movin’ around
Laughin’ and dreamin’ next to me
But I’ll never know what you see
I hope it’s a flying dream
Over fields, houses and hills
Over hospitals, shopping malls and ravines
Over walls, transcending it all
Love finds itself right where it longs to be
And I’ll never know what you see
I hope it’s a flying dream
You center me, you help me to see
What is important and what I should just let be
To blow away on garbage day
With candy wrappers and cigarette packages

Through the dark days, the heart careens
Longing for flying dreams

There’s no more leaves, the raindrops freeze
And glisten like teardrops in the the trees
Sink or swim, still sinking in
I’ve been swimming deep in the blues these days

Ever since fate intervened
And took away my flying dreams

Flying dreams
Flying dreams

The first time I listened to Flying Dreams, I felt sure Kevin had written the song for his daughter, and the tears flowed.  I wish I were possessed of the talent to create something so beautiful to honor my own child.  I wonder if he knows how much I worry over him.  I wonder if my kid knows that his and his brother’s well-being are at the heart every decision I make.  I wonder if he knows how much of my grey matter he occupies.  I hope so.  And I hope not.

When I consider the future, I never don’t consider a future with crappy MD taking from him.  Maybe this worry now means preparedness for the future.  I hope that his needs are no different than any other man’s–life, liberty, the pursuit of happiness, you know. . .  Future me’s vision of my future son is fuzzy.  All I know is that I see a shaggy, long-haired dude who’s really tall, really tall, and looks a little off-balance as he trods too heavily.   See, in my future, he is still walking.  His hands shake.  I can’t imagine what type of occupation he has or if he has found love.  I can’t imagine with whom he passes his time, but I hope his people are understanding and patient.

If we were ever to move residences, we’d seek a house with a first floor bedroom to ensure he has access.  It’s not that I want my kid to live with me forever because seriously, get out! But if the MD progresses to a degree independent living becomes impossible, he always has a home.  We have a dumb amount of life insurance, just in case.  I spend time teaching lessons he refuses to learn–carry one thing at a time, move deliberately and with intent, watch with your eyes before moving with your body–in hopes that some day, some day, those strategies engage before an emergency or injury occurs.

You don’t get to pick disease.  Fate intervenes; disability and disease choose you.  It chose my kid before I even knew I was pregnant.  You do get to pick your response to it however.  An empowering reminder came to me through this lyric–

You center me, you help me to see
What is important and what I should just let be

We’re coming up on the third anniversary of my boy’s diagnosis.  When I began writing here, it was merely an outlet, a distraction that kept me floating above a river of despair.  I really wanted to be pulled under back then, but instead I wrote.

I’m reacquainted with an entirely different Wendy as I reread some of my original posts.  I don’t obsess over every eventuality like I once did, I truly don’t.  Priorities emerge. This stupid disease has helped me “let it go” when things, and not just health-related issues, need to be let go or toned down at least.  Still working on that one though. . .  This stupid disease forced the hand of advocacy on my kid’s behalf, and it forced me to find a voice.  My voice will never sing beautiful lyrics, but it did help raise money for kids with muscle disease.  Even when I do feel like sinking, which would be way easier, I kick like crazy.  Not flying.  Breaking even.  Balance.


The Rainmaker

Remember the movie adaptation of John Grisham’s book The Rainmaker?  In the film, Matt Damon plays a straight outta law school fresh-face assigned to work with a couple, characterized as a bunch of rural yokels, whose son has leukemia.  Big Insurance Company, Great Benefit, refuses to cover the claims, and refers to dying Donny Ray’s parents as, “stupid, stupid, stupid.”  They even put that in writing.

I’m not the sharpest knife in the drawer, but I am no dummy.  With the fire of a thousand suns, I loathe being treated like a sucker.  I’ve abandoned all hope for customer service assuaging any dissatisfaction I may have.  My customer “service” experiences time and time again have taught me that the service element is quite dead. Call it what you like, and pretend having a statement about your service mission legitimizes the bullshit you’re shoveling onto my plate; by and large, customer service, with Elvis, has left the building.

You may recall that my son had what I understood to be an MRI of his brain completed last July.  Imagine my dismay to receive a bill from the service provider indicating I still owed them $1,197 for that procedure because my insurance company denied payment.  I formulate informed questions based on whatever clarity I have in a given situation, and I’m a public educator, so I don’t have a ton of “extra money.”  Prior to the procedure I called my insurance provider, and Ron, Great Benefit’s jolly representative, told me it would be covered.  This conversation occurred in June.

Employees working in a call center

I sought resolution today, but lacked the fortitude to speak directly with “customer service”–this I knew like I know my name.  I’d hoped that contacting them from work–you know, where there are other people who sorta expect me to behave like a professional and not an enraged lunatic–would prevent any random acts of violence toward property and possibly inhibit a barrage of profanity heard from here to Mumbai.  Swearing rarely gets you what you want in the “service” world.  And yeah, I’m way overusing the quotes today, but you see the whys and wherefores, right?  Instead, I took to my keyboard and drove the Representative Chat Autobahn.  Note: I had to edit a wee bit–obviously my insurer isn’t Great Benefit.  Although like the fictitious literary corporation, my exchange left me feeling a bit unreal.  Also, the parenthetical comments were communicated only in my twisted little head. 

Yolonda B. has entered the session.
Yolonda B.: Hi, thank you for contacting Great Benefit Insurance! My name is Yolonda and I will be glad to assist you today! Please note that if you are inactive in the chat session, you will automatically be disconnected. Staying active will help us answer any questions you have more efficiently. How can I help you today?
WENDY WEIR: We received a large bill from one of my son’s providers. I am curious why so little of the procedure was covered. Is it the family max has yet to be reached?
Yolonda B.: I am very sorry to hear that you received a large bill. I can definitely review the claim for you and determine where these charges came from. Who is this claim for? (You’re not sorry, so stop trying to ingratiate yourself.)
WENDY WEIR: Number 1 Son, from Children’s Hospital of Wisconsin
Yolonda B.: Thank you! Can you also confirm your son’s date of birth?
WENDY WEIR: Big kid’s date of birth
Yolonda B.: Thank you again! Do you also have permission to speak on his behalf today?
WENDY WEIR: I do. (Some days I feel like the child wouldn’t brush his teeth unless I freakin’ reminded him to, so YEAH, until he’s covering his own insurance premiums, I’m allowed to speak on his behalf.)
Yolonda B.: Thank you so much. What is the date of service that this bill is for?
Yolonda B.: Alright I was able to find the claims for that date of service, what is the total amount that you are getting billed?
WENDY WEIR: I don’t have it in front of me, but it is near $1000
Yolonda B.: Alright I am showing that there is one claim that has processed with your benefits and is showing a patient responsibility of, $502.87. There is also another claim for another service that your son had done for $605.50 that is listed as patient responsibility due to this procedure needing to be approved before it was done. Did you give written permission before this service was received that you would be responsible for the cost?
WENDY WEIR: I called Great Benefit before the procedure to ask if it was covered, and was told it was. Given that, I’m sure I signed off on that consent. You can imagine how displeased I am now to read your last question, as I am sure now that I will be stuck with the balance.
Yolonda B.: I am terrible sorry to hear this Terry. In order for these charges to be considered the provider can submit scientific evidence that shows this service is safe and effective for your son’s condition. (it’s terribly sorry; terribly is an adverb modifying an adjective describing your fake emotional state.)
WENDY WEIR: My name is Wendy, not Terry. (I know you have 20 chats going on at once, but drop the “you’re my friend and you can tell because I am using your first name bullshit.”  You’re busted.  Fucking pay attention to your customers.)
Yolonda B.: Sorry about that Wendy. (So glad I called you out on that Yolonda.)
WENDY WEIR: My son has muscular dystrophy. I am 100% certain we would not pursue an MRI of his brain otherwise. No one chooses MD or MRIs just for fun.
Yolonda B.: This provider did not bill in for an MRI, so that could have been where the miscommunication happened. (Miscommunication my jiggly, middle-aged ass!)
Yolonda B.: The billed in for a Magnetic Resonance Spectroscopy.
WENDY WEIR: Well, I don’t hold a doctor of medicine degree, so am unfamiliar with the nuances between those procedures. Great Benefit doesn’t cover spectroscopy then?
Yolonda B.: Your son’s doctor can submit scientific evidence that shows this service is safe and effective for your son’s condition. That is correct, this procedure needs to have a prior authorization before its done, it is currently listed as a procedure that require review based on the information that the provider would have. (And I would know this how??)
WENDY WEIR: Thank you for that last bit of information. I will contact his neurologist. I would like a copy of this transcript so I can refer to it when I contact them. How can I get a copy of this?
Yolonda B.: Unfortunately there is no way to print transcripts at this time, however I can give you a reference number for our conversation. Otherwise you can try to highlight the conversation, hit Ctrl +c and then hit Ctrl +V into a separate document.
WENDY WEIR: I’ll take that reference number please. Thank you.
Yolonda B.: Of course, that reference number is blahblahblahblahblah. Again, I am terribly sorry that I could not deliver better news about this claim today Wendy. (Maybe you’re a little sheepish that you screwed up my name, but I don’t for a microsecond believe you’re sorry, and not a trace of terribly sorry.)
Yolonda B.: Aside from this claim information, was there any other questions for me today?
WENDY WEIR: No. Good bye. (F-ers.  OK, that one I voiced aloud.)
Yolonda B.: I hope you have a great rest of your day. Thank you for using Chat. (Yeah, the rest of my day is gonna be just dandy, thanks to the outcome of this keen chat, thanks)
Yolonda B.: Goodbye Wendy.
Yolonda B. has exited the session.
You are the only user left in the session (There is some kind of metaphor here, but my brain is too exhausted to flesh it out.)

So where does this leave me?  Just like The Rainmaker’s Donny Ray’s poor mom: Stupid.  Stupid.  Stupid.

I contacted my son’s neurology clinic, hoping they can aid my navigation of Great Benefit’s Sea of Semantic Smoke and Mirrors. Between this and the return of The Walking Dead, I don’t know how much more my heart can take in twenty-four hours.  Wish me luck, good people!



It’s my big kid’s golden birthday. He’s fourteen on the 14th.  He hung on to life on the inside nine days longer than expected, that giant baby did. I was a house, no, I was an estate by the time he decided to make his way. He was worth every second of that extra nine days’ wait. Happy birthday, my son.

You’ve had quite a run here these last few weeks. In no other place I know, eighth grade students face the immense pressure of getting into a “good” high school.  You vie for “golden tickets” for open houses at the “good” schools, complete online applications, audition, request letters of recommendation, draft essays, and wait in a block-long line to get a space for the formal test.  I don’t recall having done this much groundwork for university matriculation, and I got a really sweet scholarship. The pressures you and your classmates face should be found only in a dystopian work of fiction.  Growing up anywhere else in the world, you’d go to the school nearest your home in the city you live.

You admitted nerves, but you conquered them with persistence. You felt unprepared, but you proved that showing up is half the battle.  I’m proud of you.

Now you wait.  Letters of acceptance arrive in December, and our family’s future hinges on what you read in that mailing.  (Friends, if you’re reading this thinking I’m chock full o’ my usual hyperbole, know that in this case I speak the level truth.) Number 1 and Number 2 choices are solid–I know you’ve got the heart of Husky, but you could be a General too, and that would be OK.   But you were under-impressed by the Owls, and choices four and five simply aren’t choices.  One and two mean we stay; any other return means we go.  We move to another city.  That’s OK.  We’re prepared to do whatever we need to do for you and your brother.

There are days I don’t know what I want to see revealed in that acceptance letter (OK, I WANT choice #1).  I’ve never in my adult live envisioned living outside the city, but would the ‘burbs really be so bad?  Not bad, but not me.  Not us.  Maybe they’ll fit perfectly.  Maybe not.

Wait, this is about you, YOU my boy.  It’s your birthday.  I’ve wondered what to get you, what kind of material gift to give you.  You give away very little, but you let me in on a little secret Monday, and I feel though it’s your birthday,  I received a little becoming-a-mom-day gift from you, and you don’t even know it.

I nag on ya for spending all this time staring at your phone, earbuds ever-present to the point of appearing surgically implanted.  You’re a YouTube zombie–you don’t even hear me when I yell at the top of my lungs for you (and I’m no delicate little flower), and no matter how many times I crab at ya for blasting your music too loud, you don’t seem to heed the lesson.  Neither did I.  Which explains a lot about why my hearing thresholds are what they are today, and though I wish to serve as your cautionary tale, I’ve come to realize that you do have a little bit of your mom’s heart beating inside your own.

Eighth grade me was not skinny or popular or beautiful.  It shouldn’t matter when you’re fourteen, but it does.  I was not confident.  Or cool.  I was hiding inside my room in the dark, trying to figure out just what the hell I was. I was first chair in band.  I was the middle school salutatorian.  I was reliable and dependable. I was the fastest girl sprinter in my middle school. I was everybody’s friend, which was freaking awesome. I got to do a lot, I guess, but I didn’t believe any of that at the time.  I felt never good enough.  I mistrusted every accomplishment as dumb luck, and deflected any positive comment cast my way.

Middle school is a labyrinth of all the unkindest cuts, and I bled.  Wound care was administered in my headphones.  Music was my solace.  LOUD music, the bass thumping so loud that the headphones quite literally bounced off my head.  So loud you could sing along from downstairs.  Lying on my bedroom floor, wrecking the shit out of my hearing despite your grandparents’ strongest protestations, I found me.

And I think maybe you have found yourself.  You’re finding yourself anyway.

I learned this week that all your time isn’t in fact spent watching banal, inane YouTubers riffing video games or opening Pokemon cards.  You’re listening.  You’re picking songs I loved when I was your age when the ancient version of your earbuds (my headphones) were eternally attached around my head.  You love the band Rush.  You hear Subdivisions and interpret the music video for me.  You sing all the right words, just like I do.  You pull meaning from those song lyrics, and maybe the view is a little middle schoolish, but that’s OK because you’re a middle schooler–you’re not supposed to feel like you’re applying for college this year–you’re fourteen.  You get why the guitar solo in Limelight rocks so hard.  You mention that Geddy Lee’s bass inspires you, and until this week, I’d never heard you utter the word inspire.

You used to write, can you recall?  You created notebooks upon notebooks of beginnings.  Your author’s dreams were grandiose, you had designs on writing the next great American (elementary school) novel.  You began hundreds of tales, characters based not-so-loosely on yourself and your friends, and other literary characters you enjoyed.  You haven’t created a great body of work in a while, but now you want to create music.  You wanna make some noise, learn bass lines and play along with your new really old favorite songs.  Guess what you’re getting for your birthday, kid?  Four strings.  Rock. And also roll.

“Dude, we gotta start a band!”

Your birthday fills me with longing–your sweet baby cheeks, your feather light tufts of blonde hair, the corners of your blue eyes, now green, turned up when you smiled. Things were quite simple then–little kids, little problems. . .   Your MD, my “management” of your diagnosis that is, is what made me carve out this outlet, my little creative writing .com of the internet.  However desperately I wish I hadn’t felt that pull to write, I am thankful for this outlet.  What a weird thing to say thank you for.  Thank you, my boy.  Happy Golden Birthday.   Get on that bass and rock, kid. 


Instrument of Torture

What do you see here?  

Most of you see a manual can opener. That is what I saw until an hour or so ago, nothing but my crusty old, hand-crank can opener. 

For my son, this isn’t a can opener–it’s an instrument of frustration. I had my kid help with dinner after piano lessons tonight. Ace parent that I am, I responded with “tough shit” when my kid whined about having to empty the dishwasher ALL BY HIMSELF. And then, just to rub kosher salt–you know, the really granular, sharp salt shards–I made him open a can of baked beans.  Not because I enjoy torturing my child, but I wasn’t asking the kid to scrub the toilet with his own toothbrush or *gasp!* not watch YouTube or anything. He leads a life of relative leisure.  Dishes aren’t Everest, you guys. 

Now before you crucify my side dish selections, know that the big one just returned from piano and the little one won’t be home from football practice until 8:15. We’re playing dinner real fast and loose these days, so adding a can of chemically-enhanced legumes to the brats completes what is known as a balanced meal, y’all. Just because I used the S-word earlier doesn’t mean I’m a total parent failure. 

The point of this entire story is that every so often I, the mother of one very tall teenager, catch a glimpse into that tall teenager’s future. Except that future is now. Right now. Today. He doesn’t have the grip strength to manipulate a can opener. He achieved a modicum of success, but opening 2/3 of a can, and not a contiguous 2/3 of the can’s circumference, isn’t really success now, is it?

Some days his struggles are more clear than others.  Damn, I hate MD. 


Section 504

In my children’s school district, the school psychologists coordinate efforts for students with disabilities who qualify for accommodations under Section 504.  For the uninitiated, Section 504 is a part of the Rehabilitation Act of 1973.  It’s a separate entity from special education (about which I can cite chapter and verse), so I’m a little outside my wheelhouse.  Plus, dammit!, it’s my kid.  Section 504 prohibits discrimination based upon disability.   It’s an anti-discrimination, civil rights statute that requires the needs of students with disabilities be met as adequately as the needs of the non-disabled are met.  Ha!

When your kid has a physical disability, no accommodation on earth can play as a leveler.  Ostensibly, 504 plans allow for equity.  As an example, it would be “unfair” for my son to be graded similarly to his able-bodied peers in physical education.  It might be unfair to hold him to the same time constraint for passing between classes if he cannot motor across campus in the three minutes or so allowed for everyone.

I experienced a particularly challenging evening with my number one son last night after his first day of school.  Much of the evening was spent crying in my car (me) while he railed back in frustration.  I was on guard at #2’s rainy/stormy football practice while on the phone trying to talk #1 through something I believe he should have been able to cite chapter and verse.  I would have loved to have been home with #1 to assist, but I worried the storm might force practice to close up early–the last thing I would’ve wanted was to leave my kid, covered in heavy equipment, some of it metal, out in a thunderstorm.  But in so doing, I failed #1 in a big way.  Sometimes a child’s disability cuts through the dark delight of his mother’s ignorance more like a laser than others.  Last night I was sliced to ribbons.

So this is how I spent my afternoon, in response to my son’s school’s school psychologist, who’d emailed me about beginning his Section 504 referral.  It’s time.  I’ve managed to delay this reality for more than two years.  But it’s time.  She needed some background information about his diagnosis and functional effects.  Laying it down in print startled me a bit.  I felt a small measure of clinical detachment as I answered her questions, so why were my eyes tearing up?

We were told on January 21, 2015 that he has some type of muscular dystrophy.  At this time, his official diagnosis is “myopathy” which is a general term for muscle disease.  He also has chorea, which is a neurological disorder characterized by twitching, jerky, involuntary movements; in him they’re particularly notable in his hands.  He has undergone some genetic testing which ruled out the 25 most commonly occurring types of Limb-Girdle MD, which is the subgroup he’s most highly suspected of having, but without a full genetic panel, he hasn’t been assigned a particular subtype yet.  It may be that he is one of seven or eight people in the world with another of the incredibly rare subtypes.  He underwent a brain MRI in July, and that did not return a specific diagnosis.  The MRI was done because the neurologist he sees felt he may be having some problems with his brain actually firing the muscles at the cortical level.  MD is a progressive, neurological disorder meaning every day is the best day he has left; there is no cure and he is very likely to progress into requiring a wheelchair for ambulation.  The estimate is 10-20 years between diagnosis and wheelchair.  He’s 2.5 years in.

The functional results of the MD for him are weakness, discoordination, and fatigue, affecting his legs and arms predominantly.  The chorea renders his hands unstable and weak.  He experiences difficulty with ADLs (activities of daily living) across the board.  Walking is tiring for him; he often just needs to sit down and rest.  He’s extremely clumsy and has very poor proprioception—he doesn’t know where he is in space, so walks into things and people; he misjudges steps and the pressure his body needs to change positions.  Regarding fine motor, he has weak grip strength, so opening bottles or using a knife or pizza cutter for example are hard, carrying a plate of food can turn south quickly.  He drops things easily and often.  He needs more time to maneuver the lock on his locker or grab books or other materials and when there is a time constraint, he becomes anxious and his hands tend to work even less well.  He has a splint for his left (the weaker) hand which he is to wear at night to prevent muscle contracture.

He’s followed at Children’s Hospital of Wisconsin Neurology on at least an every 6 month basis, and he has periods of occupational and physical therapy depending on how he presents at clinic.

Is this a decent start?

It was sufficient, probably more than sufficient, she replied.  And again I kinda wanted to cry.  Acceptance comes in stages and waves for me, but the fact remains:  I fucking hate that my son has MD.  The previous evening’s homework/problem solving fiasco reminded me that nothing comes easily for my kid.  Can’t there be just one thing that’s a cinch?  Just one??


My kid’s already pissed at me from last night, when he tells me that he and his gym teacher had a little tete-a-tete about what he could do in gym right now.  Completely separate from MD, my son’s collarbone is still healing from its July break, and he’s been restricted from gym class at least until September 28.  I VERY CLEARLY communicated that to his principal, homeroom teacher, and gym teacher, yet for some reason the gym teacher felt a little chat with my kid felt about what he felt comfortable doing in gym today was enough to green light it.  I am so far beyond pissed right now, I’m seeing stars.  I KNOW he’s in eighth grade and they’re supposed to be more independent.  I KNOW that his immobilizer has been removed, so he looks fine.  But the thirteen year old DOES NOT DECIDE what he thinks he can do in gym when under express orders to the contrary.

On his best day, physical education is a crapshoot.  This is a child who walks into walls on a fairly routine basis, a kid who trips because he can’t quite feel where his body is.  Having smashed his clavicle sure as hell did not improve that condition.  The 504 plan saddens me; it reminds me that something in my genetic code resulted in my kid’s being born with MD, and I never don’t feel responsible for this shit diagnosis.  I did this to him.  But in a quirk of timing, starting this 504 today reminds me that I have to do what is best for my kid, because no one else is his mother.  Even if he is in eighth grade.  Even if he is a 6’1″ thirteen-year-old.

Even if he is so far beyond pissed at me, he’s seeing stars.