by Kristen -

Hopefully

Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.”  The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity.  He was about seven years old at the time.

The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place.  It was considered a routine procedure.

Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.

“We have a problem,” the doctor reported grimly.  The steel rod had accidentally nicked their son’s heart.  He was bleeding internally.

“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.

Stunned, my friend’s husband interrupted.  “Wait.  Wait.  Did I hear you correctly?  Did you say you think you can fix this?”

The surgeon looked him in the eye and somberly replied.  “Yes.  We think we can.”

*****

I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen.  It has never been so with Daniel.  Autism swept “reasonable” out of our lives.  Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.

I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life.  I realize now that I haven’t reached that place after all.

Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years.  They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.

This shouldn’t have come as the blow it did.  There had been incidents, serious ones, during the last few months.  In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage.  He spent three days in the hospital undergoing dialysis to flush the toxin from his system.  Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.

I knew about these episodes, even recognized uneasily that they were escalating.  Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world.  He enjoys a unique, hard-won bond with his primary caregiver.  It’s been the best place Daniel has lived for years.

Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child.  Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time.  Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?

Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home.  The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility.  His care team would transfer with him, lessening the impact of the move.

Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse.  Everyone except the contract department, which controls the flow of funding.  They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.

“We want to keep Daniel with us,” Kristen told me.  “His behaviors are difficult, and we don’t want him to end up in Southern.”  She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.

I should have known these words were coming, words I told myself again and again to prepare for.

But I wasn’t prepared.  I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.

I wasn’t ready to hear the word “institution” in relation to my son.

*****

That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees.  I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend.  I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless.  Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.

My husband understood this.  When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered.  He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.

“Hopefully,” she added, “it will be an Adult Family Home.”

“What does that mean?” I asked frantically when Andy hung up the phone.  “What does she mean, ‘hopefully’ an Adult Family Home?  As opposed to what?”

He didn’t need to answer.  I already knew.

*****

I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility.  I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win.  We are still only at hopefully.

And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years.  Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility.  The shadowy menace held in the dark of my heart had taken shape, ready and waiting.

Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong.  “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.

It had beaten me.  I was done.

Except we don’t get to be done when we’re parents.

*****

To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already.  Suffice it to say that things got worse before they got better.  The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper.  Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.”  Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.

For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.

It took two agonizing months, but in the end we got what we wanted.  Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal.  I don’t know if that’s true, or if we were just lucky.  The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house.  Daniel moved to his new, secure home a few days ago.  He seems comfortable there, happy.

On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there.  “Things always work out for Dan Man,” he reminded me.  I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance.  I tell myself that I won’t be duped again.

A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen.  It’s a tidy, light-filled home with a swing in the backyard.  I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.

On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look!  That’s where we came that first summer!”  I laughed with exuberance. “Maybe, when things settle down, we can go there again…”

Hope remains resilient.  Or so it seems.

 

My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.

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 -

Cornered

Cornered

Among other things that irk me, drivers who fail to pull fully into their parking spaces, leaving their butt ends in the driving lane, annoy me to no end.

At the mall recently I encountered an all-star offender, nearly half an SUV hanging out of its allotted space, a prime spot just four slots back from the front of the lot.

Muttering, I steered around the vehicle, noting that the driver remained in his seat, talking, it appeared, on a cell phone.

After parking my own car, I cast a baleful glance his way as I walked toward the store, shaking my head and gesturing in “what the hell?” fashion as I passed.

Entering Macy’s, a stab of remorse at my peevishness made me turn back and glance at the car.  The driver was leaning out his door and looking back, as if just noticing his poor parking skills.

Then, with mounting dismay, I watched as he got out and began pushing the SUV forward, right hand on the steering wheel, knees bent with the effort of moving the car.

The car I now realized had stalled.

Mortified, I hurried to the third floor to buy the gift I’d gone to purchase.  I’d planned to take the package back to my car before an appointment at the Apple store, but hesitated, afraid the motorist I’d wrongly condemned would spot me as I returned.

Warily, I approached the glass doors and peeked out.  Man and car remained, joined now by a minivan parked nearby.  After transferring several items from the backseat of the stalled car, the man finally climbed into the minivan, and I waited for it to drive away so I could slink to my car unobserved.

They didn’t move.  Skulking by the door as customers came and went, I realized the man and his rescuer had settled in to wait for a tow truck.

And there I stood, frozen, too ashamed to approach my car, trapped by my own bad behavior.

This humiliating episode should logically segue into commentary on erroneous judgments, stories we’ve all heard about persons, often disabled, unfairly attacked when others jump to conclusions about behavior that to the casual observer is extreme or inappropriate.

In truth, though, I have not personally endured a truly terrible episode of judgment in relation to my disabled son, at least none that I’ve allowed myself to remember.  Sure, we’ve withstood sidelong, perplexed, or disapproving glances, startled comments here or there.  But Daniel’s autism is pronounced enough that most people soon discern that something beyond the norm is at work, that he is indeed “legitimately” disabled.

And if I’m honest, people rarely had the chance to point out my son’s inappropriate behavior.  I was too quick for that, heading off reproach with explanation before it began.

For years I carried my son’s disability ahead of me, preempting anticipated criticism before it could hurt either of us.  Actually, Daniel is insulated by the very disorder that makes him vulnerable.  But I couldn’t bear to have him misunderstood, deemed a brat or “behavior problem” when his issues went much deeper, were, in fact, beyond his control.  In public, my instinct to protect him kicked into overdrive, drawing a cloak of justification around his shoulders, shielding him from an insensitive world willing to indict my child along with autism’s distasteful side effects.

But I was acutely aware of how I imagined the world saw me, too: an ineffective, irresponsible mother, inadequate to the job I had longed for for years.  I knew in my heart that I was failing my son, and my daughter, the whole family structure I was supposed to have nurtured and shaped to perfection.

I feared society’s judgment, and wanted it to know it wasn’t my fault.

Can I admit this to myself?  Can I write this in this blog?  That at my most overwhelmed — lost and flailing and self-pitying — I offered up an excuse, an au courant disability to absolve me of who I’d become, to explain the wretched chaos of my world?

Because life was chaotic, chronically so.  Nothing had prepared me for the sea change autism brought to our lives, the grief and anger and guilt; the turbulent days and endless nights; the exhaustion and unbroken fear for Daniel’s future, the trauma it was inflicting on his sister.  As my son became an enigma I struggled to understand, I became a person I could barely tolerate, but felt powerless to change.

How much easier to seek absolution for my failings than do the hard work of modifying them; I was already working as hard as I could.  I wanted a pass, forgiveness for my shortcomings: my petulance with store clerks when my patience was shot; my anxiety, which imbued so many occasions; my isolation from friends whose “normal” children brought heartache and resentment; my stubborn unwillingness to accept this thing I could not change, even as I was assured by well-meaning friends that I’d been specially chosen by God to embrace it.

There’s a reason I’m like this, I wanted to scream.  This responsibility is devouring me, has reduced me to a snapping, cornered animal, fighting back the only way I know how.

I remember years ago asking a neighbor if she could pick up my daughter from a birthday party her daughter was also attending, dreading the ordeal of dragging Daniel into a noisy gymnastics center certain to provoke a scene.

She sighed pointedly before agreeing, and I recall bitching later to a friend, “Why couldn’t she have just done it cheerfully?”  Did she have any idea how onerous such a simple task would be for me, how easy she had it by comparison?  Couldn’t she see I was drowning here?

Why didn’t everyone understand that?

Harboring this attitude for years, of course, made me less tolerant myself, venting my accumulated angst at ill-placed, irrational targets.  Years of angry defensiveness is pretty exhausting.  And even in my self-centered misery I knew I wasn’t unique at all. Our world is awash with misfortune and heartbreak and setbacks, large and small.  I had it no worse than millions of people, and in ways too numerous to count, I had it better.

Acknowledging this truth, however, doesn’t prevent my anger from lashing out sideways at the wrong mark entirely.  It doesn’t stop me from being an ass in the mall parking lot.

While trying to examine this behavioral flaw I was blindsided.  My son’s case manager called recently to warn us that Daniel’s funding for one-on-one care is at risk.  He is doing so well in his new placement that the agency in control of funding thinks he no longer needs the personal aide assigned to him.

I was floored.  Of course he’s doing well; he finally has the resources he’s needed all along to do so.  It felt like hearing a doctor tell a patient with high blood pressure that since his condition is now under control, he no longer needs his medication.  Even worse, loss of this funding would mean Daniel’s expulsion from the new group home where he is flourishing: one-on-one care for 15 hours a day was a condition of their accepting him.

The panic came flooding back once more, the “now what?” alarm that’s been sounding since we learned the word autism, the crippling uncertainty we’ve lived with for years, but which has never lost its power to stun, to paralyze, to corner.

Honestly?  Acknowledging that I’m still responsible for my behavior regardless of the fear and difficulty I’m facing pisses me off all over again.  Oh, I’m much better than I used to be, no longer the self-conscious, brittle woman convinced the world has nothing more pressing at hand than to observe me with fascinated disdain.

Despite accepting long ago that my son’s autism will bring a lifelong series of challenges, though, each new instance triggers the fervid need to protect him that I’ve felt since he was a child.  I think I’ll always experience that snapping, cornered-animal defensiveness when it comes to his welfare.

But there are plenty of legitimate targets for my wrath.  Maybe, someday, I’ll learn to come out of my corner swinging at the right ones.

 

“Cornered” image by StocksbyAnna

by Kristen -

Letting Go of Sisyphus

Sisyphus

I wrote this essay 12 years ago, and am struck by how much has changed since that time, and how much is still the same.  

The call from my son’s teacher caught me off guard that Tuesday afternoon.  Daniel had bitten again, this time another child, his peer buddy from the integrated classroom.

Despite a history of such incidents, the news was a blow, and I chastised myself for breaking down.  This was old ground, after all.  My son is 11 years old, and I am seasoned at this game, an old hand at the mercurial nature of this disorder.  An expert at setbacks, of despairing quietly alone, or ranting wildly to anyone at hand.  Of trying new tactics and behavior plans, of adjusting medication, of learning physical restraints to subdue without injury.

I am an veteran now, of autism: hanging on, living through, never, never giving up.

My son had excelled in recent months, with a new interest in words and flashcards, proficiency on the computer, the endearing habit of shadowing me as I moved throughout our home.  More than ever before he sought our company, remarkable in relation to the isolated, self-contained world he so often preferred.  These modest gains were welcome respite from the struggles with behavior, the anxiety that pervaded my thoughts each day.

Now his progress seemed a cruel sham.

“I was set up,” I thought desperately, as his teacher detailed the circumstances of the latest incident.  “He is past that now, he must be past that now.”

The “bitee,” my son’s peer buddy, was just fine, handling this un-buddy-like display with surprising maturity, testimony, perhaps, to sensitivity training: the blending of children like my boy with normally developing children, whose ups and downs do not include raging, aggressive outbursts, like the one later that same Tuesday morning during community training at the mall. That episode required full body restraint, twice, by his teacher, in the middle of the food court.

People stared, of course, and wondered what was wrong with my child, who appears normal, on the surface; who is, in fact, beautiful.  I can say that, you know, unashamed: he is beautiful.  He has that going for him.

****

We are working on the animal cards tonight.  He struggles to decipher the name of the animal printed on one side, waiting for the moment I turn the card, and he sees the picture, for he knows dozens of animals now by sight.

“Deh.”  “Rahba.”  “Tee-ah”.  Deer.  Rabbit.  Tiger.  Speech apraxia makes discerning his words difficult, but I understand him.  He is learning.  He watches my lips for a hint: earnest, heartrending, trying so hard to gain a skill so burdensome.

“Cah.”  “Whey.”  Cat.  Whale.

Good job, Daniel.  High five.

****

I fear, in the bleak moments like Tuesday afternoon, that this disorder will engulf me, the person I could have become washed away by the demands of caring for this boy, of loving him so dearly.  I see myself forced to assume a role I’m incapable of performing, certainly not performing well.  My hold is weakening on the half-formed dream that someday – soon – I’ll begin my real life, my chance to become the person I’d envisioned fading with each passing day: a person of worth, of accomplishment, of substance.

Reading the loose script drafted for my son and me, I sense that key themes of my life have already been written, that I will not so much forge my own identity as step faltering into one chosen on my behalf.  Ready or not, I must adapt: as a warrior, an advocate, a wretched Sisyphus pushing a rock up a hill, laden by numb certainty that it will fall, again, and again, and again.  I know now that another teacher’s call will come, another incident demanding attention, or remedy, or stop-gap solution, sapping the energy and time and will to discover the real person I was supposed to be.

Other parents seem to manage better than I do, adjusting to these circumstances more gracefully, understanding, perhaps, that success is most fully measured by our ability to meet with dignity the unwelcome demands which touch all our lives.  I am ashamed of my struggle to find meaning from this challenge.  God picked me, after all, to mother this special child, so He must think I’m very special.  Or so I’ve been told.  Sure, I wanted to be special; this just isn’t the kind of special I had in mind.

I’d rather cling to the clouding image of the life I thought I’d lead, grasping an ice sculpture after the party when the guests are gone, as it slowly melts in my hands, little pieces of my life dripping away until its shape is unrecognizable.  Oh, yes, I want to hold on. Denial is preferable to facing the dark fear that my legacy will be my failure to give my son a normal life; that even my profound love for him will not make him well; that the best I can do is keep pushing a rock and never give up.

****

“Zee-ah.”  “Duh.”  Zebra.  Duck.  Always tap the raccoon card because its tail is distinctive.  Unlikely to read by conventional methods, Daniel progresses slowly, one word at a time.  We hope to build a sight vocabulary through painstaking repetition.  “Aight.”  Alligator.  I stroke his neck when we come to giraffe and comment, “See how long this is!”  As I turn the next card he watches my face and I want so much to cheat and help him.  “Wah,” he says.  Walrus!  There is no joy more stunning than his pride as I cry with delight, “Good boy, Daniel!  My smart, beautiful boy!”  You will read someday if it takes us ten years.  You can learn to read …

****

Oh, and they say that God does for us what we can’t do for ourselves.  Kicking and screaming, it seems I am becoming what I wanted to be all along.  What a painful path to understanding that while I longed to be “exceptional,” I was unprepared for circumstances that truly are so.  How slow I’ve been to recognize that the challenges I’ve been fighting have made me more than I was, forced me to become a woman with more on her mind than what to serve at her next dinner party.  The real life I’ve been waiting for is here, with these flashcards, and they are my salvation.

****

It’s a difficult evening, and we are alone together.  Undefined discontent, expressed through Daniel’s whining and floor-flopping, has been simmering all afternoon.  “Just an hour until bedtime,” I tell myself.  “Just an hour more to go.”

The phone rings, and I converse distractedly with a friend.  Daniel joins me on the sofa, back arching and crabby, thrusting a packet of flashcards in my lap.  They are the more difficult set of animals, words he has not yet mastered.  I would have preferred a more familiar exercise to calm him and possibly avert a tantrum.  Winding down my conversation I begin holding up cards, the pictures facing away from him, trying to concentrate on my friend’s words.  I hear my son’s frustration as he struggles with a word he hasn’t memorized.  And giving him now my full attention I see him tapping his neck.

Giraffe.  He recognizes the word giraffe.

The rock doesn’t seem so heavy just now.

We went up the hill today.