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.

Stolen Summer

Lost summer

When she was 11 years old my daughter Natalie was an extra in a movie.  A friend of ours landed her the roll of “church-goer” in a scene filmed at the Catholic parish just a mile from our home, when he served as assistant director for “Stolen Summer,” first winner of the Project Greenlight film competition launched by Ben Affleck and Matt Damon in 2000.  Parts of the movie were shot here in Deerfield, hometown to the contest winner, writer/director Pete Jones.

As you can imagine, she was thrilled, delighted with the glossy photo of the film’s co-star, Bonnie Hunt, who’d kindly scrawled next to her signature, “It was great working with you, Natalie!”

I ran into Pete Jones at Starbucks recently, and the title of his movie has been in my mind ever since.  As the summer of 2014 passed into fall, I had the sense that it, too, had been stolen, or perhaps more accurately, simply lost.

It’s been nine months since my son’s move to an adult family home, the transition we planned for and agonized over for years.  I realize now how much hope I’d pinned to this move, how dearly I wanted it to mark a turning point in Daniel’s life, to be the moment when the rest of his life, his real life, began.

For months I’ve been holding my breath, my own life on pause, waiting for the transformation to unfold.

I knew enough to give it time, to allow him to settle, to adjust to the life-change this move would entail.  And he did adjust; he adjusted rather beautifully, falling into the routines of the new household, agreeable if distant companionship with his housemates, and affectionate, nurturing bonds with his caregivers.

He adjusted better than I did, in fact, unburdened by expectations honed over a dozen fretful years.  Perhaps this is one gift autism grants the people it affects as profoundly as it does my son: Daniel doesn’t realize that in the eyes of the system he is now an adult.

It took me all summer to recognize that I’ve been watching his childhood recede, and with it, the mindset when autism still seemed malleable, and open to improvement; where options and potential still shimmered with expectant possibility.  His move to the adult system, so long anticipated, now carried a more threatening measure of permanence, the grim recognition that this may be as good as it gets.

I should have seen this coming.  Rationally, I knew his behaviors wouldn’t magically disappear once he turned 22 and moved to a new living situation.  His obsessions moved with him, stubborn, baffling, hampering every new opportunity I’d allowed myself to dream would emerge at this stage of his life.  The off-grounds day program we imagined providing structure, purpose and meaning to his days was put on indefinite hold at the end of August, after repeated, disruptive episodes of beverage stealing and aggression.  Staff now provide a “home-based” program, involving scheduled chores, neighborhood walks, visits to the animal shelter: modest pursuits within the safety zone, the scope of Daniel’s tolerance.

I knew this was possible, even likely.  I hoped anyway, and clung to the nebulous but cherished future I’ve been envisioning for my son for years.

All summer I waited for it to get better, even as I understood that whatever “better” means now is light years away from what “better” used to mean, once upon a time.  For months I’ve been laden by an inertia I don’t fully understand, except the vague fear that the best days of my son’s life are behind him, the sense of possibility I’ve clung to for years now gone.

I don’t know if this is true; my fear may be a purely defensive, reflexive response to disappointment, to a diagnosis I’ve been struggling to reconcile for 20 years.  I pray that his life will evolve in ways that I can’t begin to imagine now.  But with the stakes so high — the rest of my son’s life on the line — I can’t bring myself to let go and “trust in the process,” as we are told to do.  That kind of simplistic adage has never cut it for me, not where my children are concerned.

Yet I’m no longer Daniel’s caregiver; I haven’t been for nearly seven years.  Accepting that I could not care for him nearly broke me, left me stunned, powerless to degrees I’m still discovering.  The sorrow of letting him go, the dank, potent guilt of it, keeps me from “turning it over,” from trusting that his life will unfold as it is meant to, even when that faith is the only thing left to cling to.

Instead, I spent the fleeting summer of 2014 in a cocoon of rigid, frightened watchfulness, eyes fixed on a prize I already knew wouldn’t be won.

We dreaded the shift to adult living, the ominous milestone hanging over the head of each parent of a profoundly disabled child. It took three years to secure Daniel’s placement, and when we finally had it, I was buoyed by a surge of optimism that carried me right over the edge.  The new beginning we were hoping for proved merely more of the same, a change of environment scant armament against so powerful a foe as autism.

My disillusionment crippled me all summer.  I accomplished almost nothing, focusing my impotent attention on Daniel’s progress down the same, narrow path he’s been traveling for years.  I must have been aiming higher than I realized, back in January, when he took to his new home with ease, laughing and smiling by the end of that long day when he arrived, officially, at adulthood.  It seemed like such a good omen at the time.  I feel betrayed by my reckless optimism in the face of his troubled history, by the exuberance that let me forget, just briefly, that autism is lifelong.

This summer wasn’t stolen.  It was simply lost to me.

I can let go of that now, though, and write about it, even while wrestling, still, to understand my reactions.  The journey of acceptance is lifelong, too.  I’ll be traveling this path for the rest of my life, my real life, as well.

There are summers yet to come, in my lifetime and in Daniel’s, opportunities still for discovery, for steps that may lead, one day, beyond the path he is traveling now.

This summer is gone, but Daniel is still with me.

He will always be with me.