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Life with a Superhero

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Over twenty years ago, in a small Israeli town, a desperate mother told a remarkable lie. She told her friends and family that her newborn child had died. That lie became the catalyst for the unfolding truth of the adoption of that same baby—Michael —who is, in fact, very much alive and now twenty-two years old. He also has Down syndrome. When Kathryn Hulings adopted Michael as an infant, she could not have known that he would save her life when she became gravely ill and was left forever physically compromised. Her story delights in how Michael’s life and hers, while both marked by difference and challenge, are forever intertwined in celebration and laughter. With candor and a sense of humor, Life With a Superhero wraps itself around the raucous joy of Michael’s existence with his four older siblings who play hard and love big; how Kathryn and her husband, Jim, utilize unconventional techniques in raising kids; the romance between Michael and his fiancée, Casey; the power of dance in Michael's life as an equalizing and enthralling force; the staggering potential and creativity of those who are differently-abled; and the mind-blowing politics of how Kathryn navigated school systems and societal attitudes that at times fought to keep Michael excluded from the lives of kids deemed “normal.” No other books about the parenting experience outline what to do when, say, a child runs across the roof of a tri-level house pretending he can fly, or shows up in a 7th grade social studies class dressed like Spiderman, or calls 911 when his girlfriend breaks his heart. But, as Michael’s mom, Kathryn has been trying to figure how to be a mother in just such circumstances—sometimes with success, sometimes with dismal failure—for over two decades.

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Chapter 1. Unwrapping

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Unwrapping

Michael came wrapped in layers, too many for a pleasant spring day. Even indoors, a small knitted cap was secured over his ears with yarn tied in a sloppy bow underneath his chin, brushing up against a matching sweater buttoned high on his neck. There was a small bead of sweat on his brow, but he seemed parched; a blister festered on his lower lip and, in the fluorescent lights, his skin was a dusky shade of pale yellow swirled with pasty blue. Where his head had been shaved on the sides to accommodate an IV tube insertion a few days earlier, I could see pea-green veins throb in a nervous, thirsty flow. About half an hour earlier, before I held Michael in my arms, I had met his escort, a close relative of his, who was also blanketed in perspiration from her trek through the labyrinth of Stapleton Airport.

It was not difficult to spot this small, winded woman and the quiet infant she carried on her bosom like a backwards papoose. In addition to the baby, she lugged a large blue duffel bag over her shoulder. Exiting the terminal ramp, she had a lost, searching look, not unlike a child on the first day of kindergarten who, before entering the classroom, peers over her shoulder to make sure Mommy is still there, waving her on, nodding in assurance. I was not sure if this woman, whose voice I’d heard, but whose face I’d never seen, was looking backwards for comfort or forward for closure; either way, I ached for her.

 

Chapter 2. Crawling

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Crawling

I’ve known for a long time that my family plays hard. There’s no

changing that. Still, their exploits have been self-limiting. They have been slapped by the universe enough to figure out when to back off, when to call it a day, and when, maybe, to be a little afraid. The only thing for me that has equaled my kids’ glee over making me quiver with worry was the loud dinnertime retellings of their foibles, follies, and adventures: “We held hands when we were jumping off the cliff into the quarry!” “We were playing hide-n-seek at American Furniture

Warehouse!” “The sled was falling apart before we reached the bottom!” “We were winning the shopping cart race at Target before we got kicked out of the store!” “We were jumping the fence at the pool at midnight so we could go swimming naked!” “While we were dancing in the tent, there was a bear lurking outside!” But getting Michael to move with abandon, to act in the progressive tense (you know: verbs that end in -ing), to live like a superhero, and to embrace adventure and a kick in the pants as his guide—so he could also tell his story with aplomb—was not simple. Getting him to crawl was challenge enough.

 

Chapter 3. Speaking

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Speaking

In our family therapeutic model, I carried on with my specialty—

speech. As the primary parent at home, it made sense; I talked to and with my children all day. It was a natural fit. I just talked and read and sang with Michael a bit more. During our regular check-ins with speech therapists, we focused on what we could replicate at home. But the acquisition of spoken language proved to be a long journey.

Soon after realizing that Michael could indeed crawl and walk and run and negotiate stairs, I also realized that I had begun to suppress my own fears about Michael’s ability to communicate. Sometimes, it takes a keen ear and endless patience to engage in a conversation with someone who has Down syndrome. I can’t say for certain this applies to all individuals who harbor the genetic anomaly, but I’ve spent the past twenty-plus years around enough folks with Trisomy 21—the medical term used when a person has a full or partial extra copy of chromosome 21—to make an educated generalization. Comprehensible speech is of paramount concern in the wide, wacky world of Down syndrome.

 

Chapter 4. Running

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Running

Before it happened, the day was bucolic. I stood on the dewy

September lawn in back of the synagogue drinking cream soda and eating a bagel shmeared with cream cheese. Michael, who was three years old, was sandwiched between Jim and me. Jim was in a neck brace, still recovering from an accident. A month earlier, he, Nathan, Sean, and

Joedy had been in a roll-over on I-25, while driving home from a day at

Water World; at the time, I was at home with Michael and Edie. After the accident, the kids were black-and-blue from seat-belt bruises, and

Jim was left with a compression fracture of his fourth vertebrae. They were still achy and sore, but on that September day, they were happy to be alive, in the sun, on the grass, at the Temple.

Between noshes on my bagel, Jim, Michael, and I waved goodbye to my four oldest children as they trotted off to their indoor classrooms for the first day of Hebrew school, to learn their alef-bet, how to daven

(pray), and the meaning of tzedakah (charity), so that dropping their allowance quarters in a charity box every Shabbat and each Sunday would make sense. The Rabbi stood in the middle of a swaying circle of parents and sang a lilting prayer, blessing the arrival of such a lovely morning and celebrating the future of the Jewish people, our children.

 

Chapter 5. Swimming

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Swimming

There is a certain look that can be passed from one mother to an-

other; it is a singular look, and it is saved for specific moments. It is not a pleasant look. It is more like a sneer of contempt. A scoff. The upper lip slightly curls, and teeth are not quite bared—still, the possibility is real that fangs may appear—the eyes redden and then close into razor-sharp slits, and the chin ever so slightly lifts to expose the pulsation of the jugular vein. This look can be seen at Target when another mother’s child pleads and wails like a banshee for a squirt gun. It can be seen at a restaurant when another mother’s child has tossed crumbled saltines over the back of the booth into a dining patron’s hair. It can be seen at a movie theater when another mother’s child moans for Milk

Duds and threatens to hold his breath and then throw up if a box is not purchased immediately. Once received, it is unforgettable, for nothing says “you suck as a mother” better than the look.

Around 1997, when Michael was six years old, I received a variation of the look, en masse, from a sea of females who were simultaneously growling and grunting as they rampaged toward me. Clad in bikinis, one-piece swimsuits and, I think, a sundress or two, they waded—no, they tsunamied—toward me, creating a splashing, cyclonic mess out of the two feet of water that filled our neighborhood baby pool. It didn’t help that I started giggling. No, it didn’t help at all. For this version of the look transcended the traditional telepathic message, transmitted by

 

Chapter 6. Playing

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Playing

The past few years, I have started to type a fan letter, but I always end

up hitting delete, even before I print it out to see how it reads on paper, to see if maybe my words look less creepy on an 8 × 10 sheet graced by sunlight than under the starkness of office lights and the glare of my computer screen.

I’m a middle-aged woman, and I swear that I’ve never written a fan letter to any celebrity. Never. Not to Oprah, not to Baryshnikov, not even to Treat Williams. I admit, I did wax poetic my adoration for

Bobby Sherman on a piece of construction paper spritzed with Love’s

Baby Soft perfume when I was eight years old, and I swooned over the life-size poster of his boyish frame that hung on my closet door. I never sent that red crayon confession of undying worship, though; I think I was unsatisfied with sending my innermost thoughts to a fan magazine and, unable to find Bobby’s personal address, I deep-sixed that loveletter in my flower-power trashcan.

Since that time, I have been consistently unimpressed with the juvenile antics, the self-obsessed posing, the ridiculous salaries, and the self-proclaimed-pseudo-political-expertise of the silver screen jet set.

 

Chapter 7. Believing

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Chapter 8. Learning

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Learning

I wrote and hand delivered a letter to Michael’s elementary school prin-

cipal after he brought home a project on Native Americans, complete with a Crayola picture of a chief in feathers and war paint, and a story scratched out in his emerging block print. The project was intended to provide a sample of his work, proof of progress or not, and a prompt for discussion at his upcoming Individual Education Plan (IEP). And, what a piece of work it was. The first and only line read, “My name is

Crazy Horse because I like to act crazy.” My letter to the principal suggested, that perhaps, just maybe, it might have been a good idea to teach the kids that Crazy Horse was a courageous Lakota named for his father, to talk a bit about Little Big Horn, and to mention the monument in

South Dakota. I wrote quickly, because I didn’t want this issue to cloud my son’s IEP which was within a week. I wrote deliberately, nearly breaking my pencil as I pushed words onto paper. I wrote stoically, because I believed the warrior I was becoming needed to refuse to cry.

 

Chapter 9. Imagining

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Imagining

I have a bone to pick with what the mighty and powerful at Walt

Disney Studios have allowed, specifically the machinations of the darling pixies who toil away so diligently at their hugely successful offshoot, Pixar. You see, they complicated my parenting skills, especially with Michael. Now, I know that masters of the cartoon genre have long been known to work on two levels: one for the pure imagination of a child and another for the pure as the driven snow recesses of the adult mind. I suspect it has always been an industry fueled by inside jokes, winks and nudges, but now, I’m convinced that the small world of the Magic Kingdom has, shall we say, enlarged; it’s become a fully engorged, phallic fantasy land designed to have penetrated and complicated my existence.

They are endlessly entertaining—yes—but those jovial workers at

Pixar went a frame too far when they chose to impact my life. They made it personal. They left me with agonizing moments of public humiliation and, I’m sure, near-miss encounters with concerned social workers from my local child welfare agency. See, I too can be an “imagineer,” the lovable moniker endowed upon the Disney geniuses who have given us classic movies and endless family treasures and probably adopted by those Pixar poops. I imagine most of the animators employed by Pixar to be guys between the ages of twenty-five and thirty.

 

Chapter 10. Flying

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Flying

For a moment, suspended over an expanse of nothingness, their col-

lective breath only a speckle in the span of totality, my family flew. Of course, I wasn’t with them; I am permanently grounded by my abdomen full of internal adhesions. So, when my family took to the skies without me on a clear summer day in Southern Colorado, it was meant to be a secret. It was a secret for more reasons than just a kindness to spare me any feelings of envy; those motivations would become clearer as the story unfolded. Regardless, I wasn’t supposed to find out—but all covert adventures eventually find a voice. Someone always rats.

Michael, who was fourteen at the time, was the rat of this particular frolic in the wild blue yonder.

“Mommy,” he whispered into the phone from the comfort of a cozy room at a Holiday Inn, “I have a secret.”

Michael, Jim, and Edie had traveled to Cañon City to compete in the Summer Swim Club State Meet. They’d left me home to relax, to find my bearings after a hot, sweaty July filled with physical challenges.

 

Chapter 11. Dancing

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Dancing

I know that it is not appropriate to repeatedly scream out in agony

when one of my children is performing in a sold-out, standing-roomonly, high-school talent show. It could easily be misinterpreted as rude.

Or as child abuse. I know this. That, however, doesn’t mean I haven’t done something like that. Or exactly that. I have. I am a middle-aged, overweight, perpetually dorky-acting, potty-mouthed woman who is often in pain, and sometimes, decency be damned, I slip.

For weeks, Michael had been rehearsing for his coveted role in the annual talent show at Rocky Mountain High School in the spring of 2009. It was his junior year, and we had been perpetually listening to the soundtrack from School of Rock as Michael put his body through his original choreographic moves behind the closed door of his bedroom, in front of his full-length mirror. Jim and I watched a couple of his rehearsals—we sat on his twin bed, underneath the life-sized Luke

Skywalker/Han Solo mural. Michael’s stage was the middle of his bedroom, and his music played from a boom-box on his nightstand. In typical Michael fashion, the choreography was . . . flexible—in other words, it was completely different each time. He went with the inspiration of the moment, and we oohed and aahed regardless of the exact steps. Michael had recently been propelled into a milieu that gave him a lot of inspiration.

 

Chapter 12. Waiting

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Waiting

As Michael approached his fifteenth birthday, he became energized

by the upcoming promise of gifts and cake and maybe a party. His birthday is in February. In November, on a Monday, during dinner time conversation, Michael asked Jim how long it was until his birthday.

“Your birthday will be in eleven Mondays, Michael,” Jim offered.

Jim is an engineer, a scientist, and he can reduce everything to equations and numbers.

I glared across the table. “You’re kidding, right?” I said.

“Eleven Mondays?” Michael piped in.

“No, Michael,” I interrupted. “Your birthday is not for a very long time. Let’s think about something we can do today that is fun, okay?”

“Wait,” Jim said. “Hey, Michael, let’s get out a calendar and mark the eleven Mondays!”

And so they did. Michael had a calendar with the eleven Mondays until his birthday marked with big, red, Xs. Jim went to work for the next eleven weeks and solved engineering problems that are versed in terms and ideas completely disconnected from the daily lives of most folks. I spent the next eleven weeks answering Michael’s daily, sometimes hourly question: Is it Monday? Is it Monday? Is it Monday?

 

Chapter 13. Wondering

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Wondering

On the evening of March 20, 2011, the stage in the Timberline

Church auditorium was graced with human beings who carry with them a parade of diagnoses. There—the girl whose arm hung stiffly, in a permanent right angle at her side. There—the boy whose head stuck out far beyond his neck. There—the girl whose short stature had no balance with her limbs. There—the girl who merely stood and stared when the music played. Gathered on that stage was an amalgam of birth defects, genetic mutations, the outcomes of accidents and injuries, and mysterious, still unnamed conditions that simply “are.” I could have made educated guesses as to the scientific labels and conditions assigned to most of the cast members of the show. The only diagnosis, though, that

I would have been one-hundred percent accurate on would be for those individuals who have Down syndrome.

I know that something unexpected happened to Michael’s chromosomes before, during, or after his conception. It was silent, it was unstoppable, and it was unknowable. I was not there—as Michael is adopted—so I have often tried to construct and crystallize and hypothesize my son into existence. Whatever the circumstances, I assume there was an abundance of love. I have no proof this is true, but my heart needs this to be a part of the story.

 

Chapter 14. Wrapping

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Wrapping

Sometimes, from my upstairs bedroom, at any given time of day, I

can still hear Michael talking to himself. I remember how I used to run downstairs and glue my ear to his closed door, worried that something was terribly wrong with this scenario. I recall how I was informed that nothing was wrong and that some people with Down syndrome just have a tendency to let inside voices escape outside more often than typical folks might. Now, when I hear Michael having a chat with himself,

I don’t run downstairs anymore. I want to, but I don’t. Just because

Michael lets his private thoughts slip into the ethers for me to hear doesn’t mean I should invade his personal space and listen. He’s under enough close, constant scrutiny as it is. I am not entitled to any of my kids’ clandestine thoughts. They will share with me what they wish.

Michael included.

I’m not sure I ever had a clear entitlement to write this story of raising Michael. I did it anyway, convincing myself that it was necessary. I wanted to show the world how wonderful Michael is. I wanted to show how wonderful—how resplendently complicated—he has made my life. Now, however, it has become plain that it is time to wrap up this story, not because it has ended, but rather because I can no longer justify some carte blanche privilege to chronicle Michael’s life. He is no longer a little boy. He is in a committed relationship, and he is working hard to be included in the workforce. He has a calendar chock full of

 

Chapter 15. Progressing

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Progressing

About two years ago, if anyone had told us that Michael would soon

be gainfully employed and working ten hours a week, with little to no supervision, Jim and I would have appeared decidedly doubtful. I would have bitten my lip and cast my eyes downward, the way I do when I am about to cry because I feel like I am stuck in the middle of a bad joke at the expense of an innocent being. Jim would have crossed his arms in front of his chest and repeatedly cleared his throat, the way he does whenever he gets nervous or is trying to formulate a counterargument. Eventually, one of us would have murmured something to the effect of, “Hmmm. Well. Maybe. We’ll see.”

What we now see is extraordinary. Somehow, between making errant 911 calls about his mean mom or his broken heart, performing sanctioned erotic dances at talent shows, posing as Spiderman, charming his way through school, and figuring out how to be a proper boyfriend/fiancé to Casey, Michael actually got the hang of not only how to navigate, but enter the work world. By the time he graduated from Project Search in May of 2012, he had already been hired by a

 

Chapter 16. Thanking

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Thanking

I gladly offer my heartfelt thanks to the following people, without

whom I would not have been able to complete this book: my adored husband, Jim Hulings, who has the patience of Job, and my beloved children and their significant others, Nathan, Sean, Joedy & Dave, Edie

& Jeff, Michael & Casey—the nine of them are my life and my muses; my parents, Marsha Udevitz and the late Norman Udevitz, my sister,

Jane Miller, and my brother Andrew Udevitz, who all taught me how to see, cherish, and celebrate both a simple moment and the big picture; my mother-in-law, Alice Hulings, and my late father-in-law, Russ

Hulings, for helping me believe I could write; Cindy and James Pursel for unyielding friendship; Casey Lord for bringing Michael the miracle of her love; all my dogs who, at the end of the day, still think I am grand even if I haven’t written a word; Professor John Calderazzo, a gem of a man, who daily inspires me and countless others to do things we never thought possible; my dear friend, Janelle Adsit, for sharing her laughter with me; Professors Pam Coke and Karla Gingerich for giving me their care and advise; Patryica Hatten for bringing play, light, and joy to our lives; Foothills Gateway Inc. for providing ongoing support for people with disabilities in Northern Colorado; the Poudre School

 

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