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.

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It’s All Fun And Games Until Somebody Breaks His Brother’s Phone Screen

The title pretty much tells the tale. The fallout of this episode of “Shit Breaks When Two Middle Schoolers Won’t Stop Screwing With Each Other” is #1’s cracked phone screen.

This just in: You may be an up and coming badass pitcher, but your accuracy with strings of Mardi Gras beads whipped at your brother isn’t major league. Here are five fun lessons the boys have learned in the past hour:

  1. YOU, #2, are going to pay for the repair.
  2. Your “emergency”, #1, doesn’t mean my life stops so I can run you to the Apple store immediately after piano lessons tonight. A jaunt to the mall wasn’t on my agenda.
  4. I’m genuinely mad, and I am also disappointed. I’m not in the mood to joke with you now, kid. You are sweet and funny, but you done screwed up–now is not the time for a joke.
  5. You do the research. You make the appointment. (Just not tonight, kid. Jaysus!)
  6. OK, six. Stop talking to me about it. STOP. TALKING.

Really, it’s not the end of the world, but geez! do I resent both boys’ assumptions that I’d drop everything and cater to their mess at the drop of a hat. Is that the pattern I’ve led them to believe?

I’m disappointed that they don’t feel the gravity of trashing a $600 piece of electronics. I feel like I’ve taught them better than that–to take care of their property. The damage was unquestionably an accident; I know that. But even accidents have consequences.

I feel a grounding coming on. That’ll be a first for us. It won’t be a long grounding, because of the accidental nature, more like a statement grounding. They’re good boys, and for once, I’m not overreacting or underreacting. Just reacting.

How Have You Made The World A Better Place Today?

I prepare breakfast for my Yahoos every morning before school. Their teen and tween selves are entirely capable, sure, and I don’t have to do this for them, but it matters to me that I do. I remember my mom making breakfast for my brother and me on the mornings she didn’t have to work, and I still carry echoes of those conversations with me. I guess my hope is that in the future my kids will look back and remember that we had some special conversations at the breakfast table too.

You all know that I am bonkers for the book Wonder, by RJ Palacio. I have recommended the book to many friends, colleagues, acquaintances, really anyone who will listen to me. At its core is a message of kindness. Wonder’s protagonist is a fifth grader named Auggie, a child who, after dozens of surgeries, finally in fifth grade enrolls in his first brick and mortar school. Auggie has Treacher-Collins syndrome, a disorder that causes facial deformities. You can well imagine how the world is not especially kind to someone who looks very different. Wonder shows us just how.

The kids in Auggie’s class, are fortunate to have Mr. Browne, prince of a teacher and good guy extraordinaire, in their lives. Mr. Browne teaches the kids many life lessons in the form of precepts, beliefs about the way we should act in our world. Officially, a precept is a command or principle intended especially as a general rule of action. Unofficially–words to live by.

Some years back I recommended Wonder to my friend Kathie, who at the end of that school year presented me with a gift. When I opened the gift bag she handed me, I found 365 Days of Wonder {Mr. Browne’s Book of Precepts} within. Palacio had gone on to author companion books based on Wonder’s theme. This particular volume contains exactly what you might expect given its title: 365 days of precepts, one for each day of the year.

At least once or twice at breakfast time with the boys each week, I select that day’s precept to read. I ask the kids what they think it means, and sometimes, though they’ve been awake probably only eight or nine minutes by this time, the kids play along thoughtfully. The fictional Mr. Browne has inspired enlightening pre-dawn conversations. With the naïve hope only a mother holds for her babies, I do hope my sons remember these exchanges fondly. Even more, I hope my boys, loves of my life, live and heed Mr. Browne’s messages.

I began working at a new school for weeks ago, and I am having a hard time reaching one of my students. Sixth grade girls can be as cuddly as wolverines, and one of the wolverines in my charge, well, I’m workin’ on it. . . I brought my precept book to school with me last week, and I’ve begun Mrs. Weir’s Board of Mr. Browne’s Precepts. Here’s the inaugural post:

No act of kindness, no matter how small, is ever wasted. –Aesop

It’s overcast today, the sky flat, dull February white. My husband is working this weekend, and social media is flaying the four cavities of my heart. In place of any traditional news media I’m glued to NBC’s coverage of the Olympic Winter Games (Ski Jumping, large hill if you’re curious). The kids went to a friend’s, but before they left, I asked them this:

I ask this question of them every so often (OK, usually when they’re at the zenith of sloth-dom), and I asked them today. My big kid, clever that one with evasion, asked back what was I doing to make the world better today?

I made a cake. I made this heart-shaped chocolate cake with homemade chocolate frosting dusted with pink and red sugar. Cheeseball? Super cheeseball. But you know what? It’ll make my husband smile, and my three boys will make it disappear by Monday, I am sure. My effort to improve the world today was close to home and dorky, but I like it.

Here’s today’s precept:

Those who try to do something and fail are infinitely better than those who try to do nothing and succeed. –Lloyd Jones

I tried. I’m good with that.

What are YOU doing to make the world a better place today? I’ll slice you up a piece of cake while you tell me about it.


Brave or Crazy

People who’ve never spent time in the central city sometimes say I’m brave or crazy working where I do—it’s “so dangerous” I’m told. I’ve known students expelled for bringing weapons to school, handguns secreted in their pockets or backpacks. I’ve broken up fights, though no more–I’m getting too old to think I can intervene in that physical business. I’ve been called vile names by students who refuse therapy or straight up walk out of my classroom. I’ve been named in a lawsuit in federal court by an irate parent (currently awaiting trial for sex crimes, that guy–oh, karma, how I love you, though I sure hate that a young man’s life was impacted), and parents have screamed in my face, demanding my license.

But those are not my everyday experiences.

Neither are school shootings everyday experiences. But wait. The New York Times reported today that Since Sandy Hook in 2012, there have been 239 school shootings nationwide. 438 people have been shot, and 138 of those shot were killed. At school. OK, so not every day. . .

You know what’s brave in 2018? Sending your children to school on a random Wednesday. Just ask any one of the parents in Parkland, Florida. You know what’s crazy? Thinking that school violence is a phenomenon limited to institutions in the “inner city” and that it could never happen to your child. You know what’s dangerous? Assault rifles.

No parent should ever have to fear for their sons and daughters when they kiss them goodbye in the morning.

Holy crap, for the first time in over a year, I’m in agreement with words coming from the highest office in the land, twenty of them anyway.

But what’s going to be done about it? I mean, besides continuing to “send out thoughts and prayers” obviously.


Road Rage

A parent never wants to learn that two cars were shooting it up as they raced/raged past your children’s school playground via social media.

Before you chide me with the inevitable “See, I told ya! I still can’t/never did/never will understand how you send your children to a city public school and/or remain a city of Milwaukee resident when it’s the fourth poorest city in the nation” call to action: no one was hurt.

My #2 heard the gunshots from the science room, but #1 didn’t hear anything from his classroom. Curiously enough, there was no mention of the shots fired made from either of my sons. Had I not asked Saturday morning, I don’t believe either child would’ve said anything, except perhaps in afterthought. My husband spent a few minutes studying the exterior of our Lannon stone home, looking for evidence of bullet strikes yesterday, and came up empty. We joked that the miscreants behind the wheels and triggers must’ve been expert marksmen–according to social media, MPD reported no artifacts had been found. One neighbor posted the 11:44 AM audio from his garage-mounted security camera; fourteen cracks unmistakable in their clarity. They had to have hit something. Themselves? Their cars?

No one at school was injured, the loss of innocence maybe the only casualty. I don’t even know what to do with the fact that gunshots heard in school didn’t even warrant a casual mention from either of my sons.  They both were outside hanging out yesterday, because when the temps hit upper 40s in January, you go outside!  I didn’t go into full freak out mode, and I don’t know what to do with the fact that I’m not freaked out enough.

If social media is to be trusted, it wasn’t a targeted school shooting, apparently a road rage incident gone local, and thank stars the kids had just come in from recess. Saying “well, it wasn’t a school shooting” is not to excuse or minimize ANY VIOLENT act, nope, but to illustrate that gun-wielding idiots with sub-average executive functioning skills permeate our society, “safe” neighborhoods and less safe ones alike. But no one cares, because no one will admit that this shameful, inexcusable behavior could happen LITERALLY in their backyard–it’s always in “those” neighborhoods among “those” people. And apparently we need our own personal arsenals to keep ourselves safe from “them.”  Well, it happened in my neighborhood, on my street.

I grew up with guns in the house; my parents and younger brother all hunters.  My ex-husband owned two handguns (which his mother ordered him to store at her house for awhile after I announced I was leaving him), yet for all the time I’ve spent with firearms in my houses, I’ve never touched a gun.  I don’t understand the allure. I do understand that while we say “guns don’t kill people, people kill people,” people are less likely kill someone with their fists than with a handgun or semi-automatic.

But this isn’t a blog about weaponry.  It’s a blog about being a parent whose kid has a shit disease.  A disease that renders him slow and clumsy and an easy target.  He got lucky this time; they all did.

I started another assignment at a new school Monday. This is one of the windows in my new classroom, the one right behind my head when I’m sitting at my desk–and yes, it’s in one of “those” neighborhoods, so it’s OK, right? And sure, it’s only probably BB pellets, so whatevs, “those” people don’t mind or don’t deserve safe environs.

I sent this photo to a group of my friends, and one of the girls responded by telling me that before her office moved, she found a gun alongside a stash of cocaine in the bushes outside her workplace.   It’s not just here, and it’s not just now.  I didn’t understand it then, nor do I now, and I sure as heck have no solutions to replace violence on this earth with peace in its stead.  My little mantra, be kinder than is necessary, seems to fall short and on deaf ears.  But still, do that: be kinder than is necessary, that is.  It’s a start anyway.


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.


So, Uh, Thanks

The cranberries are sugared up and boiled down into a compote, green beans layered with cream of mushroom soup and whatever the hell French’s does with onions, and the turkey’s stuffed. The aroma of the single biggest shopping day of the year wafts through the kitchen. Truth be told, my only culinary contribution for this year’s feast is one pumpkin pie.  I don’t even like pumpkin pie.  My kitchen wizardry is woefully underutilized this year. I feel incomplete, inadequate.

The real reason we collectively eat ourselves into a food coma, drunk on tryptophan and/or a nice Beaujolais or Gamay? The Detroit Lions and Dallas Cowboys!! NO, silly, it’s Thanksgiving!  Happy Thanksgiving, America. And that would be a Happy Thursday to the rest of my friends around the globe.

If you’re my friend on any of the social media outlets or hey, if we actually get to speak to one another in the real world, you see I am pretty consistent in my expressions of gratitude.  I’m good at dishing it out, but I’m great at deflecting any expression of thanks directed back my way.  Why is it that gestures of thanks from others take such effort to accept?

I am grateful for what I am and what I have.  My thanksgiving is perpetual.  –Henry David Thoreau

Me too.  Nice job outta you, Thoreau, you beat me to it. I’d like to be reverent, but because I am a juvenile masquerading as a middle aged woman, this is what comes to mind any time I hear Thoreau’s name bandied about–


Image from Wal-Mart. I don’t shop there, but I do appreciate having found this image on their webpage.

Henry David Catch! Baaaaahh!! Hi, I’m 12.  But I’m a grateful 12, and like Thoreau, I find happiness and gratitude in things great and small each day.  I’m happy that I make it to work every day after driving along Capitol Drive, the nearest I ever want to get to driving on the Indianapolis Motor Speedway, here in the central city.  It’s disheartening to see how motorists have so little regard for life–mine AND their own–that they drive like something out of an action film, or maybe what’s depicted in Grand Theft Auto (I’ve never played the game, so I’m postulating here).  I’m glad I arrive at work not dead every day is the point.  I’m happy for tulips in the spring.  I’m happy my children are achieving academically.  I’m happy for Kopps Frozen Custard sundae of the month.  I’m happy my dog thinks antibiotics and pain meds are treats–he will chomp down and ingest whole tablets and even sit in order to receive them.  Good boy, Caleb!

But of course there’s more than the little things to be happy about.  I’d be remiss in not sharing some of my favorite turkey day thankful main dishes, so here goes: a few things I’m thankful for this Thursday.  My Thanksgiving not-list is neither perfect nor pretty, and come on, you know me. . .  it’s certainly not symmetrical.  But it’s sincere.  Happy Thanksgiving, everyone, or Happy Thursday if you’re not from ’round these parts.

  1. My best friend is flying from LA to Milwaukee IN DECEMBER to see me. She loves me enough (or is off-kilter enough?) to leave sunny SoCal in December, and all I have to do is loan her one of my winter coats.  You guys, my best friend is gonna be here next week!!
  2. My Barenaked Ladies besties love me enough to spring a ninja concert trip on me.  Nikki and Bek arranged a ticket and transportation to the December 9 Toronto gig I was absolutely not attending. The girls announced their scheme after the purchase was made so I couldn’t say no.  To be perfectly honest, I said nothing for a day or two. I am so undeserving of this kind of over-the-top generosity, so I sat mute.  I’m not very good at people being nice to me, so I was reluctant to come around to my “yes.”  I should try to get better at people being nice to me.
  3. Hey, speaking of Barenaked Ladies (who, me?) my coworkers, hale and hearty souls, are making it a team effort for the June BNL show in Milwaukee. “We don’t need to sit in the front with you, but let’s make a night of it!” They’re choosing to spend time with me when they don’t even have to. Of course, once the band hits the first note, I won’t turn around again until it’s time to leave, but we will be together in spirit. Well, they will be together, and I’ll be by myself, zoned out a bit closer to the stage. Christine will be the one silently dying in embarrassment for me while I sing & dance my butt off, but that’s cool.
  4. I’m thankful my husband who, not a huge BNL fan himself, gives me space for my unbridled, giddy glee when a new album is released, and shares some measure of excitement when I call him on the phone, all choked up shouting, “YOU HAVE TO LISTEN TO THIS SONG!! ED USES WESTLEY AND BUTTERCUP IN THE LYRICS!!!!”  If you don’t know the reference, Westley and Buttercup are the star-crossed, nothing-can-separate-true-love lovers from The Princess Bride, which happens to be the first movie Tom and I watched together at a time in my life I needed more than anything to believe in true love.
  5. I’m thankful my husband leaves me little notes like this one he wrote Saturday morning before departing for work.  I know, “you guys are so cute we wanna barf.” We get that a lot, but aren’t Westley and Buttercup what we’re all shooting for? You + Me Vs The World, baby.
  6. Got Weirs on my right and Wolfgrams to the left. Looking forward to a long weekend, spending time with almost every branch of fruit or nut of my extended family tree at some point.
  7. I’m thankful to the point of speechlessness that I have an all-star supporting cast of luminaries whose generosity helped me raise over $5000 for the Muscular Dystrophy Association in 2017.
  8. I’m grateful for my friends, a cast of characters you wish you were your friends too. This year I offer special thanks to P.J. She killed it with her own shoulder rehab a couple years back, and within hours of reading about my injury, delivered a box of implements and tools designed to simplify life in the kitchen. And also wine, because wine! I opened that gift tonight, enjoying it in the spirit of thanks for her support and concern.
  9. I’m relieved that my friend Matt who was nearly killed in his home last spring, is safe and sound, and that two of his attackers have been sentenced.  You can hear Matt’s story about the sentencing here.  In related news, I’m glad his physical scars are continuing to heal as well.
  10. I’m fortunate to have a boss who says and means family first. This credo is especially important when your child has a disease that requires ongoing management and intermittent therapy appointments.
  11. I’m happy that a song can catch me on the precipice of the abyss and pull me back.
  12. I’m grateful I can read, write, and reason.
  13. And that you’re here reading.  Really.  THIS is my greatest wonder of the last several years: I write. You read.  There are so many ways to pass one’s precious time, and you’re here reading my words.  It means the world.
  14. I’m happy that I have enough.  I’ve never known hunger, and I’ve never had to worry about finding a safe place to sleep.  I’ve worked in the inner city for twenty-seven years, and finally I’m forced to acknowledge that I am struggling with the sequelae of urban poverty. The lack of basic needs being met, the language, hollering, the physical harm, the violence perpetrated–inflicted!–upon the city’s smallest people–it’s too much.  I’m increasingly less well able to handle a preschooler tell me, ‘F-off, white bitch! I ain’t gotta listen to you.”
  15. I’m happy that my children have enough. We do not live like royalty, but I can say that when mine were preschoolers, the worst I feared escaping their lips were “toot” and “fart.” Watch this. You won’t regret having spent the twenty-four seconds here, even with the poor quality videography. And yeah, to this day, the minute he gets home, he tosses off just the one sock.

For what are you thankful, dear readers? What wraps your heart up with contentedness the way this video of my no-longer-babies does for me?  Happy Thanksgiving, y’all.  Can I make you a leftovers plate to take home?