by Kristen -

Denny’s: A Love Story

Denny's

Several years ago, the former pastor of the church I worked for sent me an email a few days before Christmas, and we exchanged brief updates on our lives and plans for the holidays.

Chris and his family were going skiing in Michigan the week before New Year’s; I reported that Daniel would be home for the day on Christmas Eve, and we had our own big plans: dining at Denny’s, his favorite restaurant.

Apparently our upcoming yuletide celebration sparked an idea for the Christmas Eve sermon Chris was pondering for the new church he’d founded in Chicago. He hoped to illustrate the Magi’s likely bewilderment upon finding the humble manger, when they had anticipated grander surroundings befitting an infant king. He wondered if my feelings about going to Denny’s for Christmas perhaps echoed those muted expectations.

As it happened, I’d just learned that a letter I’d sent to the Chicago Tribune would be published on the 26th, and I sent Chris a copy of the text. In it, I described my adjustment to simpler holiday traditions, the gradual lessening of expectations as autism changed our lives.

Chris’s sermon was well-received, he told me later, my story of Christmas at Denny’s the hook he’d been seeking to hold his message together.

For years when he lived with us, visits to Denny’s were a high point for my son. We loved it too, as the franchise near our home was never too crowded to find a booth in which to ensconce Daniel while he waited, impatiently, for the meal he always ordered.

I remember in particular a Saturday evening shortly after Daniel’s twelfth birthday. His sister Natalie had her own life by then, rarely stuck with her parents on a weekend except under the most dismal of social circumstances. So it was just the three of us, Daniel anchored between Andy and me in a spacious, semi-circular booth, his eyes glued to the swing door that led to the kitchen across the dining room. Despite his elation at being there, he remained watchful: the food had not yet arrived.

A paper kid’s placemat lay in front him, on which he sporadically scribbled, when prompted, with the worn crayons provided by management to keep children occupied until their meals were served.

There was no distracting Daniel, though. Repeated assurances that his food would come soon didn’t cut it. I sensed him trying to relax, to trust us and his own previous experience, that his coveted “Sampler Platter” with a side of fries was forthcoming. Yet every minute or so he’d ask again for his food, tapping the laminated menu for emphasis.

“Frah? Cheh? Chica?”

And at last the Sampler Platter appeared, a heaping, monochromatic mound of fried mozzarella sticks, chicken fingers and onion rings, augmented by a plate of French fries. As it emerged from the kitchen he sat straight in his seat, his gaze riveted on the server’s progress toward our table, reaching for a fry before she had set the plate in front of him.

In moments his mood changed as he let his guard down at last. Only then could he truly enjoy the experience, smiling and chuckling while plowing through each delicious, deep-fried morsel, gulping his soda between bites.

That night seems like a lifetime ago, when hope still glimmered for at least a semblance of the normal life we dreamed of for our son. We’d recently begun tentative exploration of the scant, unappealing choices offered by our state for adults with disabilities, advised by transition specialists that it was never too early to begin preparing for this possibility.

But in 2004 nothing yet had been etched in stone; we were several years from the bleak December day we moved Daniel to residential care. He was still young, adaptable, impressionable. Dramatic, life-altering change was still possible, with maturity, continued therapy, the eleventh-hour intercession of God. It was possible.

Wasn’t it?

I still see him that night, his anxious face reflecting concern carried, unspoken, for a lifetime; that his simple request, finally discerned among so many unarticulated, misunderstood desires, would yet be denied him.

And once the food came, his worry allayed, he relished his modest treat, a meal of his choosing, oblivious to the world beyond the walls of the restaurant: the world of sports and video games, of roughhousing with peers or movies with fledgling boys whose voices were changing, a world of first, tentative contact with girls, a world of moving forward.

Is this what life holds for my son, I thought, the bright spot of his days eating at Denny’s with his parents on a Saturday night? This isn’t forever; it simply can’t be. This can’t be what God has in mind for my son, my beautiful, bright child. There must be more for him one day…

I didn’t realize that one day even Denny’s would be out of reach, that the disorder that limited his focus to a platter of fried food would render even that pleasure unattainable.

It’s been a year and a half since we took Daniel into a restaurant, even a fast food venue. Past incidents of upset and aggression haunt me. I don’t care if he hurts me; I’ve survived that before. I fear him hurting another, an unsuspecting stranger, standing in the way of the obsessions that seem to drive him now where food and beverage are concerned.

The team at his group home have taken him into eateries for over a year, McDonalds, Panera, Olive Garden. We’ve joined them there, amazed and encouraged by Daniel’s demonstration of acceptable behavior when monitored by professional caregivers. His case manager hasn’t encouraged us to try this ourselves, however, cautioning that Daniel must learn new patterns, breaking rituals and expectations formed over years of parent-child interaction.

Yet increasingly these last few months, I knew we needed to try. Andy and I chose mid-morning last Friday to give it a go.

We stopped at a Denny’s a few miles from Daniel’s group home before picking him up, finding it more crowded than the one back home. A few booths were unoccupied, however, and I asked the manager to hold one for 20 minutes until we returned with our autistic son. He didn’t seem particularly enthusiastic, but a booth remained vacant when we returned. Flanking him on either side, Andy’s finger hooked in Daniel’s belt loop, we walked quickly through the parking lot and into the waiting booth.

We must have looked odd, hustling our 6’1’’ son through the restaurant. Andy suggested I relax just a bit, that we needn’t behave like prison wardens escorting a convict to his cell. My heart pounded, though, the tension I intended to conceal thrumming off me in waves, the limitless calamities Denny’s held in store streaming like ticker tape through my mind.

Our booth ran parallel to the galley where orders were dispensed and the soda fountains were housed. Daniel craned his neck to get a better view, and I flashed on the image of him leaping over the partition, a maneuver of which he is entirely capable.

“I can’t believe it’s come to this,” I remarked mournfully, once we’d settled, a sticker book replacing the kid’s placemat on the table now. Andy remained calm, though, despite my anxiety, despite Daniel’s repeated demands for pop and restless gestures toward the kitchen. He covered my hand reassuringly. “Relax, hon. We’re doing fine.”

And then the beloved Sampler Platter arrived, complete with a side of fries. And Daniel relaxed, just as he used to do, wolfing down his food in customary fashion before we could change our minds. By the end of the meal he was beaming, giggling, encouraging our tickles, just as he did as a boy.

It was a tense outing. But it was a beginning, a return to a pleasure once enjoyed.

My son’s life now bears little resemblance to the life once hoped for, yet I recognize that those hopes, those expectations, were my own. I wish more than anything that I knew what Daniel hopes for, what dreams he holds dear, what experience he longs for.

Yet he remembers Denny’s. It holds meaning for reasons I may never fully understand. But he still loves it there.

Would he have been just as happy with his caregiver by his side? Maybe.

I think he remembers, though, that this experience, this treat, is part of our life, together.

by Kristen -

Pizza, interrupted

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It should have been a good visit.  My son had been asking for me all week — “Mah?  Mah?” — and even had an outing in mind. “Pee-zah!” he’d declared, again and again.  “Mah?  Pee-zah?”  It seemed he couldn’t wait to see me.

As soon as Daniel spotted me, though, I knew something was off.  Rushing toward me demanding “pop,” he gestured to the soda dispensers near the front of the restaurant.  His beverage obsession is nothing new, and extra soda is a treat he anticipates when I visit.  It’s one of the few pleasures he asks of me, a modest joy I’ve willingly indulged through eight years of structured residential care.

His aide, Brittany, however, was telling him no.

“Uh-uh.  No way,” she said firmly.  “You’re having juice.”  My heart sank, realizing he must have stolen a soda, coffee, or other random beverage that morning, and now had to pay the price.  And I knew we’d pay the price with him.  His conflict with his caregiver would infect our time together, too.

Daniel grasped my chin, forcing me to look him in the eye.  “Pop?” he repeated desperately, his dismay and frustration palpable. “Pop!”

“I don’t know how we’re going to do this without soda,” I told Brittany, longing to grant his simple wish, fearing an ugly, public scene if I let him down.  She seemed to waver, then shook her head decisively.

“You can have juice, or we can go home right now,” she told my son.  “You rather go home?”  She pointed toward the door.

“No!” he cried in alarm, throwing off his coat as he flung himself into the booth my husband and I had claimed.

Would Daniel even understand the connection, I wondered, between stealing pop at his group home, and being denied it now, with me?  Brittany’s consequence may do nothing but taint the few hours we had with him.  We’d reached a no-win situation five minutes into our visit.

We’re in a unsettled place these days.  My son’s aides manage him as I no longer can, and I don’t know whether to laugh or cry. I am his mother, but no longer his caregiver; his most ardent advocate, yet outside his circle of daily life.  Their fondness for Daniel is obvious, but tempered by a professional objectivity I can never provide.  His team aims for the long term; I live for the fleeting moments of tenderness, of meaningful contact with my son.

He wasn’t fooled by the paper cup holding the Hi-C I dutifully poured for him instead of the Diet Coke he’d been counting on. He knew he’d been cheated. I felt cheated, too, yet obliged to support Brittany’s authority, authority we granted by placing Daniel in her care.

He tore through the sticker book I’d brought him, scattering its pages across the table, requesting pop every few minutes, clenching his hands in anger when we told him no.  Andy tried to calm him, squeezing Daniel’s hands in his own as he’s done for years to soothe him.  But our merry visit was going south fast.

Making matters worse, we’d caught the attention of a young girl sitting with her parents a few booths away.  I noticed her furtive glances when we first sat down, and imagined her mother’s whispered explanation of Daniel’s likely disability, her admonishment not to stare.

Unfortunately, the girl couldn’t seem to resist.

She peered over her shoulder compulsively, regarding Daniel like an exotic carnival attraction.  Cautious at first, she quickly grew bolder, staring opening as the minutes ticked by.

Annoyed, I caught and held her eye.  I’m on to you, toots.  Knock it off.

She returned my stare unabashed for a good ten seconds, finally dropping her gaze, only to renew surveillance of Daniel moments later. When her mother left the table briefly, she shifted position, stretching her legs across the seat to observe the spectacle more comfortably.  Her father, meanwhile, was oblivious, his nose stuck in his phone.

I reported this all to Andy and Brittany, who were sitting with their backs to the girl.

“How old do you think she is?” I asked Brittany, whose own children are eight and nine.  Perhaps I was expecting more courtesy than a child her age could reasonably demonstrate.

“Oh, she’s old enough to know better,” proclaimed Brittany, glancing behind her.  “She must be 11 or 12.  She definitely ought to know better.”

I met the girl’s eyes again, my disapproval pulsing across the few yards between us.  She stared back, her expression an unsettling cross of innocence and cunning.  She knew, I was sure, that staring at my son was wrong, perhaps even distressing. But she did it anyway.  I couldn’t imagine my own daughter behaving this way in the face of such obvious adult reproach.  It was disconcerting, creepy, even, her brazen gaze an unwelcome spotlight on an already strained, dispirited experience.

Perhaps I’d known from the start that something would blow that day.  Or maybe it was the epic struggle for Andy’s drink that broke me.

One momentary lapse of vigilance, and Daniel had snatched the forbidden cup and began sucking frantically on its straw.  Andy grabbed back and a tug-of-war ensued, my husband the final victor, but not before iced tea had splashed across the table and onto Daniel’s lap.

Tossing a sodden napkin aside, I looked up to find the girl’s gleeful attention glued to the bizarre scene we presented: a 24-year-old “normal” appearing man’s frenzied struggle with his stepfather over a soda cup in a pizza parlor.

“That’s it,” I muttered, abruptly rising from our booth.

Alarm and guilt washed over the mother’s flushed face as I stood before their table.

“Your daughter has been staring at my son since the moment we got here,” I said in a low, controlled voice.  “He is severely autistic and I understand his behavior is unusual.  But we are trying to share a meal with him.  And apparently your daughter doesn’t understand that it is rude to stare at disabled people.”

Without waiting for a reply I returned to my seat.  Glancing up, I saw the girl’s face crumpling as she met her mother’s appalled glare, and heard her belated whimpering: “I’m sorry!  I’m sorry!”

I looked down at our napkin strewn table.

“I think she’s apologizing,” Brittany murmured, but I didn’t look up.  I didn’t want an apology.  I just wanted her to stop staring at my son.

Did I do the right thing?  Did I overreact?  A friend noted that I could have used the episode as teaching moment, sharing insight into autism and disabilities in general.  Our outing could have ended on an positive note.

Honestly, though?  I wasn’t inclined to teach that insolent girl a damn thing.  My son’s dignity trumped sensitivity training by a mile.  Whether or not Daniel was aware of the scrutiny didn’t matter a bit; I knew.  My role in his life has diminished, but my instinct to protect him was what mattered in that moment.  I’m surprised I didn’t go further, and scream at her out loud:  Stop looking at him, you horrid little brat!  He can’t help it, he can’t help it and neither can I!  This disorder has consumed us both.

Yet I’ve plucked at the layers of this drama a dozen times this week, revealing more questions than answers.  Did I lash out merely to assert authority over a ill-behaving child because I’ve lost control of my own?  Had I simply unleashed my impotent sorrow, recognizing that transitory moments are all I have left with my son, and one more of these had been stolen by the disorder that rules our lives?

Will my rebuke help that girl in the long run, kindle a new awareness or compassion?  Or had I simply punished her for bearing witness to our pain?

Was this, in truth, less about my son than it was about me?  Can I possibly separate the two?

Daniel’s care team is playing a long game now; I just want to be his mother for a few precious hours, untethered by rules or consequences or procedures, to engage him on my own terms.  Yet I don’t know if my terms are sustainable.  I fear alienating the people we are dependent on, who care well for my son, who we are indeed luckier than many to have found.  Who am I to question their approach when they’ve shown Daniel a fuller life in the last 12 months than he has experienced in years?

There are no easy answers here.  Yet I feel compelled to reclaim my place, my own authority, to form a new set of rules for the two of us, supporting our relationship as mother and son.

I have only my heart to guide me.  But that will have to be enough.

 

by Kristen -

Who’ll Stop the Rain

Rain

In my experience, few endeavors have less effect than telling a worrier not to worry, as the years I’ve lost to fruitless anxiety demonstrate.  Apparently, I needn’t worry that I’m alone, however, as Googling the word produces 391,000,000 hits.  We are a world of worriers.

Yet as my friend, the writer Robert Hughes, points out, “I think everybody can say with Montaigne, ‘My life has been full of terrible misfortunes most of which never happened.’”

Concurring with this assessment, though, seldom prevents me from clouding days with one worry or another, my list of what ifs and potential calamities far-reaching and often irrational.  It’s become such a part of me I hardly consider trying to change.

A recent bout with my most familiar nemesis led me to consider, though: could I at least try to embrace a less fatalistic approach, to consider the wisdom of annoying but accurate platitudes like, “Worry is like walking around with an umbrella waiting for it to rain”?

Such an apt simile, after all.  Rain, and the damage it may cause, is one of my most visceral fears.  It’s unstoppable, beyond human control, potentially ruinous.  The menacing possibilities my imagination can conjure are boundless where rain is concerned.  As a co-worker unwittingly reinforced, “Water always finds a way in!”

My phobia reached its peak in the spring of 2014, following a grueling winter of near-record cold and snowfall, the back of which every Chicagoan longed to see.  Everyone except me, that is.  The promise of spring promised me only the melting of the massive snowbanks directly into the basement of my charming but porous 90-year-old home.  I worried about the watery consequences incessantly, for weeks on end.

Given how infrequently we’ve had more than a few trickles in the 14 years we’ve lived here, even I recognized this obsession as absurd.  I couldn’t stop myself, though.  The leaky episodes we had experienced kept me watchful, wary, filled with dread whenever rain was foretold.

That spring was lost to me, my anxiety gathering like the whopping, snow-melting storm forecasters gleefully predicted for a Thursday in early April.  I’d prepared as best I could: old towels lined trouble spots, rags and buckets were near to hand.  Home from work after the day-long deluge, I braced myself at the top of the basement stairs, Odysseus facing a hostile, enemy-strewn shore.

“Be strong, saith my heart;” I recited bravely, “I am a soldier; I have seen worse sights than this.”

*****

We all have fears, real and imagined, some of which we allow to cripple us. My friend Marla Davishoff, a talented therapist, assures me I’m not alone in this particular fear; many people, women especially, feel anxiety around water and their homes. Perhaps it involves the instinct to protect our nests, our flocks.  I can scarcely recall my temperament before adulthood brought responsibility beyond my own narrow concerns, beyond caring for myself alone.  Have I really been this nervous my whole life, this irrational about problems that, while tiresome, are most certainly not the end of the world?  Whatever damage our house may sustain, we have the resources to fix it, however inconvenient that may be.  Yet when the familiar panic creeps in, I chide myself in vain: “What’s the worst that can happen?”  Plenty, my anxious mind replies.

Such frivolous worry, of course, is also just a tad self-centric, cowardly, even.  How selfish to waste so much energy on foolish fears as society reels with more sobering concerns, while I, in fact, have more serious concerns myself.  Real, life-altering concerns.

For years I thought controlling at least my physical environment would help quell the chaos of autism, the daily upset and fear, the desperate need to help my son without knowing how.  I’ve justified, too, my phobias as necessary stand-ins for the vast intangibles that have shrouded our lives since Daniel’s diagnosis, staving off a flood of legitimate, long-term worry too serious and heartbreaking to absorb.  Worry needs an outlet somewhere; how much easier to shoot rabidly at identifiable targets than the elusive, mercurial enemy that has shaped my son’s life, and my own?

For me, and many parents like me, diagnosis of profound disability in our children skews our image of a rational, predictable world.  Life “working out for the best” becomes a naive, unjustified banality, rhetoric like “What’s the worst that can happen?” scant reassurance when your child’s future, his whole existence, is at stake.

I know powerlessness now, that circumstances exist beyond my control despite pleas and prayers and promises; that love alone is not healer enough; that some losses will never be redeemed.  Autism stole Daniel’s life the day he was born, the fullness of normal experience he should have had lost to fate, or chance, or an arbitrary bestowing I’ll never comprehend.

He appears content these days.  In many ways he is thriving.  But I know all that he is missing.  I can’t abandon the worry over what his heart holds, the unexpressed dreams he may harbor that will never be fulfilled.  He is blessed with health and energy and curiosity, a family that loves him, yet he faces a lifetime of inequitable challenges through no fault of his own.  This truth is as sure as rain.  It will always find a way in.  Yet I keep trying to stem the tide.

I wonder if I’m on the right track about any of this, if these insights are really just a convoluted excuse for behavior that’s merely habitual, perversely comforting even as it cripples me.  Have the years of doubt and concern, of questions and faltering, imperfect solutions, warped me so indelibly that I no longer know how to live without worry?

I guess I needn’t worry over the why.  The possibility of change, my fledgling yearning for it and the hard work it involves, is concern enough for now.

******

As you may have guessed, our basement didn’t flood two years ago.  A few rogue rivulets escaped my towel barriers, easily wiped away.  I wasted that whole spring for nothing, fretting away moment after moment, hour after hour, until a whole season had passed, over an event that never occurred.

A few months ago we had the drain tiles in our basement replaced.  It was an expensive undertaking, postponed for years until my daughter was through graduate school and Daniel’s residential placement was, at least for now, secure.  Just after Christmas we added a backup sump pump system, to protect us even during power failures.  Marla optimistically predicts that these improvements will lay my water worries to rest, once and for all.

I was huddled on our screened porch a few weeks ago while the four cats we care for ate the breakfast I provide them each morning.  Andy’s allergies prevent us from bringing them inside, but our porch has been their home base for six years, and we’ve made it their sanctuary.

Sipping my coffee, I reflected that it will be months, perhaps years, before I descend the basement stairs without trepidation at what might be seeping across the floor, but I’ll be working on it, one step at a time.

This hopeful moment was punctuated by a piece of ceiling plaster falling on my head.

The porch roof seems to have developed a weak spot.

My time in the deep end over this new threat passed more quickly than you might imagine, more in proportion to the relative gravity of the problem.  A roofer was called.  A temporary fix was installed, protecting our porch and our cats, until we can address the issue come spring.

I’ve got this.

Not yet a soldier, but standing fast.

This time, at least.

by Kristen -

Bon Appetit and Goodbye

Pancakes

I wrote this essay seven and a half years ago, several months after moving my son to a residential school an hour and a half from home.  Reading it today, I’m surprised at its lighthearted tone, when my heart had so recently broken.  I understand now my need to fend off a loss so deep I couldn’t fully acknowledge it all at once.  Nevertheless, I like this piece, which reflects my feelings around the changes in our family at that time.  I hope you’ll enjoy it, too.  —Kristen 

 

By the time I learned to cook it was too late.  And by learning to cook I mean finding the right cookbook, brimming with simple but enticing recipes for the culinarily unimaginative, no trip to Foodstuffs required.  After years recycling the same six or seven meals week after ho-hum week, “Weeknight Meals for Busy Moms” seemed like a godsend.

Except I’m not really a mom anymore, not in the sense that has defined me for so long.  My son no longer lives with me, and my daughter has one foot out the door, leaving for college in less than six months.  My husband’s schedule is erratic, bringing him home some evenings as late at 9 p.m.

Which leaves me alone in the kitchen, a slate of brand new family recipes on tap, my family no longer at the table.

“Wait!  Wait!” I want to cry.  “I’ve got it together now!  June Cleaver is in the house!”

But time waits for no mom.  I recognize the irony of finally mastering the art of the family meal just as my family scatters to the winds, symbolic of the loss I feel around the changes of the last three months, and those that are yet to come.

It wasn’t as if I didn’t try.  But the vaguely held images of well-balanced meals prepared with unhurried competence, then shared at a cozy table by my serene and typical family, never fully (or even partially, actually) materialized in real life.  More often I recall slapping together meals of rotini with a side of orange slices, or scrambled eggs and toast, if I hadn’t forgotten to buy bread.

And my family isn’t all that easy to please, either.  As a boy, my son displayed disdain for most every food offering (even those in my famous Top Five) only satisfying my frenetic attempts to nourish him with an occasional cup of lo-cal lemon yogurt.  During adolescence, when his growing appetite placed him in the “clean your plate and then some” club, my daughter’s willingness to eat virtually anything with calories diminished to the alarming but typical proportions of a teenage girl.

My husband, meanwhile, eats nothing containing butter, sour cream, cream cheese, cheese sauce, mayonnaise, hollandaise, béarnaise or any other coating, while alternately clamoring for more steamed vegetables and asking why I didn’t buy cookies at Costco.

So many of my half-formed ideas of what “family” means have reluctantly shifted since I had a family of my own.  The demands of parenting a truly atypical child were greater than I could have dreamed possible, and what I’d considered “normal” and “healthy” and “secure” flew out the window in the face of my son’s disability.

Mealtimes were just one of a slew of ordinary experiences impeded by his unique needs.  Eating in restaurants, family vacations, doctor visits, attending a movie or strolling the zoo; Sunday school, music recitals, a walk in the neighborhood, buying an ice cream cone – each formative and familial experience I had envisioned for my children took on new and often forbidding overtones in the world of autism.

My son’s move almost three months ago to a residential school for developmentally disabled children should have brought a welcome normalcy to our home, an easing of the uncertainly his volatility lent our lives.  And perhaps this will come.  For now, though, his absence is a loss impossible to imagine healing with time.

I still reach for his evening medications when I glance at the clock at 7:45, and feel the stab of emptiness as I pass his room on my way to bed.  The constant struggle of those last grueling months isn’t so vivid right now; instead, I recall the tenderness of his hand against my face as we read the same books, night after night, as the day wound down.

I long now to recapture something as it slips away and changes shape again.  That normal family around the dinner table could be mine, I tell myself, if I just had another chance.  I’d do it right this time.  Yet I recognize that I’m holding onto to an ideal that is merely that, a fantasy painfully relinquished as I did what was necessary to keep my family whole, however unconventionally that evolved.  The home front I forged as mother is not the one I intended, but it is ours and ours alone.

Today I remember the conversations my daughter and I shared over another round of “Chicken with Bread Crumbs” or “Pasta Salad with Italian Dressing,” watching her grow from hesitant girl to confident young woman in the process.

Or my joy at the sound of my son’s voice last fall, clear and decisive, asking for a second helping of one of my dinnertime masterpieces.

“Pancake!” he cried cheerfully.  “Pancake!”

Pancakes it is.

by Kristen -

Truly, deeply

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Cynic that I am, the self-help genre typically leaves me cold.  Advice that sounds good in theory often breaks down in practice. Rarely can inspirational books or how-to articles speak inclusively to the nuanced circumstances of individual lives; people are just too messy, too complicated for that.  And self-improvement, of course, is no picnic, letting go of long-held ideas even harder.

Unsurprisingly, however, I couldn’t resist an article from O Magazine entitled “Life’s Not Fair,” in which author Martha Beck contends that it’s possible to face this fact with grace.  We just need to stop expecting life’s vending machine to mete out justice simply by inserting virtue.

Having never considered myself particularly virtuous, I continued reading anyway.

“Try this,” the author encouraged.  “Define virtue as living in perfect alignment with what you most deeply feel to be true, and happiness as an upwelling of joy that arises directly from this alignment, regardless of external factors.”

Huh?

I was stumped already.  What I most deeply feel to be true?  What do I most deeply feel to be true?

I realized I had no answer.

Distraught, I posed the question to my husband.  Fortunately, he took my consternation seriously.

“I don’t think there’s just one answer, for anyone,” Andy reflected.  “But I’d say one thing I truly believe is that sharing our lives and our burdens with other people is always beneficial.”  Or something along those lines.

Well, that wasn’t so hard, I thought, relieved that meaningful truth didn’t necessarily imply a grandiose doctrine involving infinite faith, love conquering all, or everything happening for a reason.

This kind of question has actually troubled me for years, my inability to define, even to myself, what I “hold to be true” a source of secret shame.  Only a shallow, insubstantial person can’t state categorically the principles upon which her life has been built. Right?

Oh, I know with unwavering certainty that I love my children, that I would willingly die for them, but surely that doesn’t count. Every parent feels that way.  Loving our children beyond measure is a given, a freebie answer.  My devotion to my own doesn’t set me apart, define the deepest part of my soul.

Yet I don’t recall being concerned with such questions before I had children, back when a bountiful, contented life seemed inevitable, when, with appalling arrogance, I believed the future would unfold precisely as I pleased.

In fairness, I had no call to imagine that my life would one day collapse so dramatically.  Who really does?  Besides, by my late twenties I’d already faced what I thought would be the defining challenge of my life, too naive then to understand that our lives rarely hold just one.

In the aftermath of Daniel’s diagnosis, self-reflection became an indulgence swept away by adjustment to a truth no parent is prepared for, which no platitude or pep talk or insipid essay about Holland being as good as Italy can resolve.  In the process, the groundwork of my life fell away, piece by piece: My storybook marriage fractured with the weight of our grief; my father — my safe harbor, my rock — died when Daniel was barely six years old.  And my mother, the woman who did it all, apparently met her match in Daniel’s disorder.  “I don’t know anything about autism,” she told me.  “You’re going to have to handle this on your own.”

There was no truth left to bank on, except my furious love for my children.  And I was failing them both.

All the research and resources and therapies, the saccharine stories of autistic prom queens and unlikely basketball stars, couldn’t ease the crush of despair, the fact that my son’s life had been stolen, that his condition would last forever.  This was my truth, however I tried to twist it.

That didn’t stop me from seeking a way around it, though, pursuing with fervid intensity a tenable explanation for the inexplicable; that one, precise set of words that would reconcile something so devastating.  I talked to people incessantly, my needy desperation driving many of them away.  A succession of clergy and therapists, friends near and tangential, self-help groups, the support group I formed myself, the hapless clerk at the hardware store — surely the path to acceptance could be found if I kept asking, if I demanded one hard enough.

It didn’t work that way for me.  Despair turned to rage, to bitterness, to final, awful acknowledgement of the truth I knew in my heart all along: the explanation I sought was not to be found.

And yet the most valuable answer turned out to be no answer at all.  Huddled, weeping, in the office of my longtime pastor, a man I’ve known now over 40 years, I poured my sorrow at his feet, imploring him to explain the vagrancies of God’s will, the arbitrary nature of his benevolence, his healing, his grace.  If anyone could answer the “why” of Daniel’s fate, it would be this man I’d trusted since I was ten years old.

He listened to me for a long time, hands clasped between his knees, then looked me straight in the eye. The pain on his face mirrored my own.

“I don’t know,” he told me quietly. “Kristen, I just don’t know.”

Did he understand the power of that admission, the relief he endowed by telling me that truth?  For if this man, who was supposed to know the answer, could concede that he did not, maybe I could bear living without the answer, too.

I no longer probe that wound so relentlessly.  I have my answer: I will never know.

We try so hard to finesse things, to make palatable the most bitter of truths, find an angle to bridge the gap of all circumstance. Yet those are rare on the ground.  As my husband puts it, “Everyone has their Waterloo.”  No matter how we spin it, the truths of our lives remain true.

My son has autism.  His condition is lifelong.  This is true, and there is nothing I will ever read or hear or contrive that will make it less so.

Acknowledging this, though, has softened the strain, the exhausting search for a way around it.  I continue to grieve, more often lately as we live through another transition with our son.  I will never stop mourning what he has lost.  Trauma changes us.  Long-standing crisis and uncertainty leave us watchful, guarded, suspicious of the things we once counted upon, even during periods of relative calm.  Profound disability in our children warps the people we once thought ourselves to be, or planned to become, one day.

Other parents have endured this more gracefully, and I’m often ashamed that I can’t behave as they have learned to do.  But I’ve yet to meet one of them untarnished by the indelible mark of this sorrow, this regret, this truth.

Yet in fellowship with them I know growth remains possible.  Andy, for instance, playfully reminded me yesterday that six months into sharing this blog I declared, out of the blue, “I’m really tired of being a bitch.”  I haven’t made a convincing recovery on that front, but the possibility of healing exists, one faltering footstep at a time.

I know also that parenting has brought me the most profound joy I’ll ever experience, even as it tears me apart.  No grief is more powerful than the beauty that shimmers from the remnants of the life I once thought was mine.

The answers I craved so desperately still haunt me sometimes.  But I can go forward without them.

Hope is powerful.  Joy remains.

This, at least, I know is true.