by Kristen -

Camels in Wisconsin

Kids at Botanic Garden

My close and very wise friend Marla reminds me sometimes that, as parents, we are only ever as happy as our least happy child.

Which is problematic when a) you’re as co-dependent as I am, and b) children are a never-ending source of angst all around.

Oh, they are the wellspring of all that is most beautiful in our lives, as well.  I’m acutely aware of how fortunate I am to be a mother; I can’t imagine who I’d be without my children.  And therein lies the rub.

My equilibrium — because I’m old enough to know that “happiness” isn’t really the goal after all — is irrevocably tied to that of my children’s, as it is for most of the parents I know.

Aside from the advocacy role I’ve assumed on my son’s behalf, I don’t think I’m an overbearing parent; I’ve allowed them room to mature and explore, in different ways, while remaining close and involved in their lives, even as they’ve grown up and away.

My peace of mind, though, is dependent on their lives being steady, on track, on being good.  I’ve never learned that trick we are told to embrace as our children reach adulthood, that letting go thing I’ve heard about.  I wonder how many parents really have.

Instead, I ride each wave, every turbulent passage of my kids’ lives, feeling the ebb and flow of their experiences as deeply as my own.

There are times, though, when I wish I could disengage, when I imagine what a relief it would be to do so.

Often since my son’s move early this year I’ve considered our relationship, and my aspirations for him, the goals modified, adjusted or abandoned over time.  His diagnosis 21 years ago was the beginning of the end of almost every dream I had, back when his future seemed as boundless as my love for him.

No divine flash of acceptance acclimated me to the very different life in store for him than that which I’d mapped out so cleverly in my mind.  Submission occurred over years, covert moments of resignation so subtle I often didn’t even recognize their import, the setting aside of one dream, and yielding to another.

He’s living one of those altered dreams now, in a group home tailored and responsive to his unique needs.  His behaviors are accommodated, worked on, proactively addressed.  He is experiencing a fuller world than I’d dared hope for just a year ago.

Why, then, is it yet so difficult to view his life now as the fulfillment of at least one dream I’ve held on to, a circumstance realized after years of uncertainty and despair?

A few weeks ago I received a photo of Daniel taken at the Racine County Fair, which he attended with one of his specially trained aides.  Teeming with crowds and tempting distractions, it was an outing I wouldn’t have dared navigate on my own.

But there he was, engaged and laughing in the summer sun, sitting atop a camel.

He was clutching a boxy, harness-like contraption designed, apparently, to facilitate balance on the camel’s hump, giggling, it seemed, at the absurdity of his position, but enjoying it just the same.

My quirky, unpredictable son was riding a camel.

Laughing out loud in delight, I quickly composed a reply to Daniel’s case manager, who’d sent us the photo.

“Of all the dreams I’ve had for Daniel through the years, riding a camel was never one of them.  Seeing this picture, though, I can’t imagine why not!”

I recognized in that moment how bound I am to my old ideas of how life ought to be for my son, for both my children; what will bring them fulfillment, comfort, or — dare I say it? — happiness.  I understood, too, that so many of my dreams for both of them are my ideals, and mine alone, shaped through years of my own experience and regret, my own longings and missed opportunities.  The finely crafted hopes and dreams I have for my children may, in reality, bear little likeness to their own ideals at all.

How liberating this moment should have been.  How freeing to discern that my children, now adults, can — in fact, must — take the reins themselves, albeit in very different ways, weighing the worth of their experiences by their own standards, their own views on the meaning of “happiness.”  I really could let go at last.

Naturally, it didn’t work quite that way for me.  Lifetime habits are not so easily cast aside.  From my camel epiphany emerged a prickly, peevish reaction that I’ve struggled for weeks to articulate, a sullen acknowledgment of how desperately I would like events to proceed, just once, precisely the way I want them to.

Now that would be liberating.

How horribly self-centered, and how very common: We all want what we want when we want it.  But, oh, to have respite from the worry, the chronic concern over their welfare, their progress, their lives, which mean more to me than my own.  And I’m capable of convincing myself that this would be possible if they’d just follow those paths familiar and comfortable to me, if their lives, so vulnerable and fragile, so critical to my own, played out within the safety of my own comfort zone.

Screw the road less traveled.  I want my children traveling roads I’ve walked for them for years, if only in my dreams, whether they are roads of their choosing or not.

Oh, I know where this tantrum comes from, this petulant demand for a guarantee.  I’ve had enough of uncharted terrain, of stumbling along dark roads, praying for a lucid, benevolent end.  I want convention, the known, even if it’s known only in my fantasy.  How much safer than the fathomless range of possibility, all manner of depravity and disappointment, of suffering and loss the world may casually throw their way.

I want to let my guard down, to sink into the shelter of the way things were supposed to be.

And this is the crux of it, what it’s taken me the nine months since Daniel’s move to accept: that I expected his new life to be different than it’s turned out to be.  I thought I’d relax now that he is in competent, professional hands, and in many ways I have. But this transition has new complications, as well, fresh heartbreaks to adjust to, more painful because I didn’t see them coming. His life is better, infinitely better than it was, but not precisely as I’d hoped it would be.

The better part doesn’t include me.  And being a better part of his life again is precisely what I’ve been dreaming of for years.

Fortunately, I don’t often act on this selfishness.  I am living with the ache of feeling like an outsider when I visit my son, knowing I’ll never be the center of his world again.  I concede that, at least for now, his behavior deteriorates when I am with him, that our relationship is a trigger for the issues we are trying to curb.  I’m trying my best to accept that his need for me is diminishing, and that is how it should be, even though it feels like a loss I simply can’t bear.

I support with all my heart decisions I once could not have imagined my daughter making on her own, finding her way with confidence and grace.  I applaud her independence, knowing each new decision takes her a step further from the protective embrace of my influence.  I believe she knows that I’ll be behind her no matter what choices she makes, if she fails or succeeds; that she can always run back to me even as she’s pulling away; that I will be her champion for the rest of my days.

Weeks of agitation later, I understand that I’m here again, in another stage of letting go; it caught me unaware, as it’s done so many times before.  These periods have taught me, though, that any new experience surrounding my children can feel threatening, their lives in relation to mine in the balance, as I struggle to find my own place, my equilibrium, again.

My desire to hide, to look away from the bright new paths they may follow almost overwhelms me at times.  Who knows the distance those paths may carry them?  It is simply too painful to contemplate.

But holding them back would be more painful still.

by Kristen -

What I Have

IMG_4252 - Version 2

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.”  Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.

By social media standards, life with my son won’t win any awards for excitement or variety.  We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag.  Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home.  Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more.  Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us.  More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home.  I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months.  Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud:  Picnic with Daniel on a beautiful day.  It’s not enough.  But it’s what I have.

*****

We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before.  I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch.  His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined.  There is so little I can give him now.  I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits.  It’s been months since I’ve been alone with my son.  The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence.  Old patterns are difficult to break with autism.  Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship.  I miss time alone with him, privacy as I mother him the only way I can:  tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own.  The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough.  I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me.  The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons.  A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together.  While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name:  “Zebra!” “Cow!” “Wolf!”  It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light.  “Good night, sweet Daniel.  I love you, Daniel, my sweet, beautiful boy.”

*****

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides?  Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.

But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again.  The procedural support is in place to help shift his behavior in a more positive, independent direction.  But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another.  No line will be drawn beneath Daniel’s life, or my experience with him.  I have a role that only I can play, even as I stumble and gasp and bungle my lines.  Letting go of my dreams for him has never been an option.  Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes.  But it’s what I have.

by Kristen -

If the jeans fit…

jeans

A New York mother has been making news recently for her clothing line aimed at youth with autism, and other disabilities that can turn getting dressed into an exhausting, time-consuming affair.

For years, Lauren Thierry’s autistic son pulled his shirts on backwards or struggled to zip up his jeans.  So Thierry came up with a solution.

Her “Independence Day Clothing” collection has no zippers, buttons, or tags, and both tops and bottoms are completely reversible.  Apparently they’re a cinch to put on, with no scratchy lace or fancy piping to exacerbate sensory integration issues. Garments can even be equipped with GPS trackers for kids prone to wandering.  And, says the woman behind the line, the clothes are hip to boot, featuring styles any young person would willingly choose to wear.

For parents grappling with autism’s incessant demands, the idea seems to have taken off.

Now why didn’t I think of that?  I’m schooled in the challenges of raising a child with autism, after all, the getting-dressed-ordeal just one of a slew we faced every day.

Like Thierry’s, my son needed continual prompting with everyday tasks that typical kids eventually master on their own: bathing, grooming, eating, and putting clothes on in the morning.

A former news anchor for CNN, Thierry recognized that the simple act of getting autistic children dressed can be like navigating a “grueling obstacle course.”  Independence Day’s “utility design” is the first of its kind, she says, the equivalent to mainstream clothing outlets like Gap, Abercrombie or J.Crew, but designed specifically to help the disabled population fit in.

If only I’d hatched this clever plan!  Then I’d be the genius-mom brightening news snippets, recounting the evolution of my brainstorm.  My smiling face would be popping up all over Facebook as the disabilities community heralded my brilliant, sanity-saving concept.  I’d be the proprietor of a sleek, well-designed website already sold out of nearly half its wares, gobbled up by parents grateful for tangible help at last.

I could have been a clothing contender.

Oh, who am I kidding?

When my son was young I was lucky to get myself dressed for work before the day exploded, much less devise innovative clothing options for the disabled in my spare time.  My creative energies were spent pondering Daniel’s preference for animal flashcards over those with more practical applications, or why he could blow bubbles with uncanny dexterity but fail to pull his shoelaces tight enough to keep his sneakers on.

Consultations with behaviorists to analyze my son’s random biting attacks edged out meetings with clothing designers or marketing pros.  Putting my house back together at day’s end trumped putting the finishing touches on reversible rugby shirts, hands down.

The truth is, I just didn’t have the energy to be an autism mom and a groundbreaking entrepreneur, too.  My sensory-friendly hat is well and truly off to Ms. Thierry, who seems, somehow, to have successfully done both.

As it happened, getting dressed wasn’t one of Daniel’s main challenges, anyway.  After selecting his day’s ensemble, I could be reasonably sure he’d emerge downstairs wearing it, with just a sock adjustment or button alignment necessary before his bus arrived in the driveway.

In retrospect, what I really needed was a magic laundry fairy to ensure that the clothes I’d washed and folded were placed in their appropriate drawers.

If that innovation had been available when my son was twelve, Daniel may not have gone to school one day wearing a pair of my jeans.

Jeans he’d pulled on, zipped up, and buttoned by himself, just fine.

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.