grief – Good Marching

by Kristen - June 14, 2016June 14, 2016

Ready, or not

Every few months for the past ten years, Evie from Amvets calls to ask for a donation. She is 97 years old, and has been soliciting for the veterans for over 30 years. I never turn her down, even if I have to raid my husband’s closet to fill a bag.

Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats. I’ve learned, for instance, that she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring. I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last.

Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion. Although my donation bin out in the garage was empty, I told her I’d come up with something.

“Anything is welcome,” she affirmed, as she always does. “Clothing, books. Old toys — we can use anything.”

“Well, my children are 26 and 24,” I replied with a chuckle. “So I don’t have too many toys around the house anymore.”

She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good. And stuffed animals are always appreciated.”

I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species. A lifelike lion sprawls regally across the twin bed; a five-foot giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home.

Suddenly I was confiding in a woman I’ve never met, but who has been a fixture in my life for a decade.

“You know, Evie, my son has autism, and hasn’t lived with me for over eight years. But his room is the same as it used to be. It’s filled with stuffed animals I can’t bring myself to give away.”

In a rush, I continued, explaining that I’m a blogger, and had been trying when she called to write about grief, pain I can’t relinquish, nor find words adequate to explain.

“I don’t know what’s the matter with me, Evie,” I went on tearfully. “He’s gone and I know he’s not coming home. He’s never coming home but I’m still waiting. I’m still waiting for it to be different.” My voice broke. “I can’t let go of him. I can’t let go of the grief.”

Evie replied without hesitation. “Of course you can’t,” she declared. “You carried him. He’s a part of you. He’ll always be a part of you.”

She told me then of the baby she’d lost in pregnancy, when in her ninth month she contracted measles. “I recovered but the baby couldn’t fight it,” she explained, her quavering voice steeped in remembered regret. “I never got over that, either, not completely. You never do.”

We talked for some time, about loss, what it takes and what it leaves behind. “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words. “But you don’t ever let go of what you feel for your child. He is always a part of you.”

In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care. I knew I couldn’t do it anymore; none of us could. That didn’t ease the burden of failure, though, the awful acknowledgement that my best efforts weren’t enough.

Surrounded by the mementos of his life with me, I let the sorrow flow. My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade. I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?”

His animal collection, amassed over 15 years, peered down at me. The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!”

How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name? “Bear!” “Sheep!” “Frog!” Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort; a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered.

It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor. It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand.

I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime.

If I’m honest, Daniel himself probably wouldn’t object, or even register the change to his old bedroom. He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories. On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past. He seems to recognize this as home, but a home he doesn’t live in any more. And that’s okay with him. He’s moving on, just as he should, as he must.

I think of Evie, holding the loss of her child over the span of 70 years. I told her I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all.

I don’t know when this will be so. Part of me still clutches the slender reed of hope, that Daniel’s life will turn around, that autism hasn’t slammed the door completely; that our bright dreams of growth and improvement when he entered residential care will yet be realized, even after all these years. I’m still waiting for another chance. I still want him back with me again.

This is unlikely, irrational. Futile, even. I know this; I do.

Yet hope is relentless. Perhaps that’s how it must be, too.

by Kristen - April 28, 2016

The Guardian of Positive Thinking

A few months ago I received notice to file the “Annual Report on the Condition of the Ward,” a document required of legal guardians, roles Daniel’s father and I have served since our son became a legal adult.

The court doesn’t grant guardianship lightly, even in cases as clear-cut as Daniel’s. Although he’d been living in Wisconsin for over two years when he turned 18, Daniel was required to appear in person at the courthouse in Illinois, twice: first, so the guardianship petition could be physically served to him, and again several months later, at the hearing itself. We had to demonstrate both that Daniel needed our legal oversight, and that we were qualified to provide it.

Getting him to the courthouse was a logistical nightmare all its own, and by the time our case was called, we were tense and anxious and testy. My husband hovered nearby as Daniel’s father and I escorted our son forward, ready to intercede should he suddenly bolt or become otherwise agitated. We needn’t have worried. Daniel stood complacently in front of the judge’s bench, oblivious to the gravity of the proceedings on his behalf, tapping repeatedly on a sticker book with his index finger, muttering his multi-purpose phrase, “Ahh doh doh doh doh doh doh doh dooooooh…”

We’d been prepped for questions the judge may pose: Did Daniel understand the nature of the petition? Did he agree with its terms? What plans did we have for his future, what long term arrangements had we considered or put in place? And, as divorced parents, could we make decisions together, work in tandem for Daniel’s sake?

The judge asked none of these questions, though. The evidence of her own eyes was the only proof necessary of Daniel’s need for a lifetime of stewardship. An expression of muted compassion on her face, she simply signed our petition, and wished us good luck.

I try to craft a fresh-sounding response to the questions on the report each year, regarding Daniel’s living situation, health and welfare. It feels like a test I never quite ace, my answers distressingly similar despite the passage of years. I note our weekly visits, and the activities that occupy his days: community outings, accompanied by aides, restaurant visits, shopping trips, walks on the beach when weather permits. Not a thrilling chronicle, but more than I once could truthfully recount. His life is not what I want it to be, but it’s a fuller life than he’s had in years.

Noting that the report wasn’t due for several months, I set it aside, escaping to the pages of the crime novel I’d begun the day before.

The plot centered on a 19-year-old man, soon to be released after seven years of incarceration as a juvenile offender. His newly appointed probation officer reflected that the young man would have been acclimated to re-entry into society with day outings in recent months: “The boy would have had excursions accompanied by one of his case managers. Shopping trips, a meal at McDonald’s, a walk in the park.”

Shopping trips.

McDonald’s.

A walk in the park.

I had my annual recap of Daniel’s activities right there. I need only copy, word for word, the description of a prisoner’s meager, supervised outings to capture the essence of my son’s life experience.

I shared this bleak observation with my husband later that evening, my remorse at failing to write a better story for Daniel’s life, that his experience hasn’t changed significantly in the years since we stood before the court to petition for guardianship.

“What kind of a guardian am I that Daniel’s life mirrors that of a prisoner?” I asked mournfully.

Andy listened patiently to my rambling, then asked a question of his own. “Remember the closet?”

I remembered.

It was the room fashioned by Daniel’s teaching team in those last, desperate weeks before he left home for residential school, a one-windowed storage area off the special ed classroom of the high school where he was enrolled as a sophomore. As his mood and behavior deteriorated, day by day, he spent more time in that closet than not, cocooned in his own, secure hideaway, sleeping, humming, fiddling idly with the same few books or puzzles for most of the school day.

And staff allowed it, because they were out of ideas by then, when all the painstaking structure and therapy, the routines and behavior plans and social stories had broken down, Daniel’s behavior so volatile that his team couldn’t walk him through the halls to the lunchroom, for fear he’d lash out, for fear he’d hurt someone.

“Remember the call I got,” Andy continued, “while you were at work?”

I remembered that, too.

They’d asked him to come immediately, to pick Daniel up as soon as he could. Don’t bother parking, they told him, just pull directly across the practice field behind the school, as close to the exit near Daniel’s classroom as possible.

He recalled the bite marks, red and angry and swollen, across the teacher’s arm when she brought Daniel to the car, stark testimony to autism’s vicious hold on our son, the power it wielded, beyond our understanding or control. He recalled the grief in the teacher’s eyes, the resignation of one who had fought so vigorously, and had nothing left to fight with.

Yes, I remembered. I remember it all.

“I know he’s not where you want him to be,” Andy told me gently. “But Daniel’s not in prison. That closet was a prison. They didn’t intend it to be, but that’s what it became.” He took my hand. “But he’s not there anymore.”

I don’t know how to let go of all that remains unmet in my son’s experience, to merely shrug and concede, “It is what it is.” It will never be so simple. Acceptance is an ongoing narrative, rehashed and revised and picked at, again and again through the passages of Daniel’s life. I doubt I’ll ever stop questioning what I could have done differently, if it would have made any difference at all. No one would accuse me of being a glass-half-full kind of person where my son is concerned. Autism stole Daniel’s life before he ever had a chance, and I grieve that every day.

Yet I am grateful, too, more grateful than these pages reflect, for what my son has now, for his faltering progress since I completed my last guardian report a year ago.

Shopping trips. McDonald’s. A walk in the park.

Simple pursuits that just a few years ago we ached for Daniel to enjoy again, pursuits I can no longer provide for him alone. I am his legal guardian, but no longer the right one to care for him. How this haunts me sometimes, when I want him back so desperately, to savor his presence on a daily, reassuring basis. I don’t remember the anxiety in those moments, the chronic worry, the certainty that catastrophe was imminent, a crisis that would prove irrevocable.

Yet I’m witness to Daniel’s adjustment to the life he has, the opportunities at hand. I don’t know if these are enough for him. But whether or not they are enough for me is irrelevant. My role is to ensure that possibility exists for him, that doors open, that the self-indulgence of despair doesn’t cripple me. It means embracing the progress we’ve discerned, however fragile, reaching past the loss, and daring to hope for more.

This kind of thinking doesn’t come easily for me, my thoughts so often colored by what could have been. What life would I describe for my son were this disorder not a part of it? I long to write that story, but that isn’t the story to be told. The one we are writing now needs my passion, my energy, my faith.

I remember that, too.

Year after year, after year.

Excerpt from “Those We Left Behind” by Stuart Neville.

by Kristen - November 8, 2015April 18, 2019

Truly, deeply

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.

by Kristen - November 11, 2014February 23, 2016

Beating at the Darkness

I read a lot of crime novels. If you’re not a fan of the genre, you might be surprised at how evocative its language can be, how often a sentence or phrase cuts right to the heart of things.

Take this passage from Irish novelist John Connolly’s most recent book, “The Wolf in Winter.” He’s describing the attitude of one serial killer toward another pair of killers, who are actually heroes in the series: “The Collector admired their single-mindedness, their focus… none of the fruitless beating at the darkness that come from those who have grief without power, and anger without an object.”

See what I mean? Hits right where you live. Or where I lived, anyway; where I lived for years.

*****

I was encouraged when my son began Kindergarten at the elementary school just blocks from our home. Although in a classroom for students with learning, physical and developmental disabilities, his placement at our home school signaled a step away from the whole special services system he’d been enrolled in since he was two, that menacing world still incomprehensible to me in relation to my son.

We adored Ellie, his young teacher. She was bright, nurturing, naturally fostering the affection we knew Daniel capable of. Assigned to her class again for first grade, his tolerance of a regular school setting buoyed my hope that autism hadn’t completely stolen his future, that he still had a chance, somehow, at a normal life.

Two aides assisted in the classroom, a laid-back woman about thirty, and a less demonstrative woman in her mid-fifties, who seemed experienced in all manner of students with disabilities.

As it happened, she hadn’t experienced a student like my son.

*****

As first grade unfolded, Daniel’s behavior became more turbulent, outbursts and tantrums soon the norm, the communication notebook Ellie sent home each day reporting “upsets” or “incidences” more regularly as the months passed. We met often and spoke on the phone, concurring that Daniel’s language deficit fueled his frustration, and framed exercises to help him express himself, searching for clues to his disruptive, unsettling behavior. Together, we were hopeful, upbeat, determined to unlock the mystery of my cherished little boy.

Alone in the dark moments, though, I despaired of ever truly knowing Daniel at all. My beautiful son was more an enigma than ever, moving on schedule from toddler to personhood, yet becoming a person I didn’t understand. Autism and its origin remained inscrutable, while its consequences grew more familiar with each passing day.

I picked up the call at my desk on an April afternoon near the end of the school day. By then I was divorced and working full-time at a Presbyterian church a half-mile from home. Returning to work hadn’t been part of my plan then, but neither was so much of what had transpired in the last several years. Still mourning my father’s death the winter before, I was running on overdrive, colored by grief, and doubt, by simmering, impotent fury.

“Kristen, I think you better come over here,” the young aide from Daniel’s classroom advised, her mellow voice tinged with concern. “Dan’s fine, but he had a rough afternoon.”

“What happened?” I asked, alarm and dread spiking painfully in my chest.

“Well, he — he had a bad day,” she replied cryptically. “And he wet his pants, and, well, he’s a mess.”

Ten minutes later I was in the classroom, cuddling my son as Ellie described his escalating moodiness through the afternoon: the back-arching and floor-flopping, the inconsolable fits of crying, the final wild outburst when he bit the elder classroom aide, bruising and breaking the skin on the back of her hand.

My face burned with trepidation and dismay; I sensed what was coming before Ellie spoke the next words.

“I think we have to start considering another placement,” she continued gently. “I don’t know if we’re equipped for Daniel here.”

*****

I hardly recall getting home, arranging for Natalie to stay with our neighbors after school, or nestling Daniel in front of a video. I remember only rocking in place on my screened porch, shoulders hunched as I dragged on a furtive cigarette, the future in all its threatening uncertainty crashing in from all sides.

“Now what?” I whispered again and again. “Now what?”

I learned the immediate answer to that question the next day as I sat in the principal’s office, invited, I thought, to discuss safeguards the team might employ to avoid another aggressive episode in the short term.

The aide Daniel had bitten, I was relieved to hear, had been treated by her personal physician, with no stitches necessary or follow-up likely. Understandably, though, she was shaken, and had vowed not to work with my son again, a reaction that while hurtful, in my fragile state of mind seemed justified. Bites, I knew from personal experience, hurt like a bitch, and losing control of an aggressive child is traumatic.

I expressed repeatedly my remorse at Daniel’s behavior, an attitude the principal hastened to quell, covering my hand with her own. No one blamed me, or Daniel, for the incident, she insisted. Everyone involved recognized that these episodes came with the territory.

However, the principal went on, taking a breath, on the advice of her doctor, the aide was requesting that Daniel be given a blood test.

She wanted my seven-year-old son tested for HIV.

The words didn’t quite sink in. I gaped at the principal as she continued, reluctant, it seemed, to convey the message she was compelled by her position to deliver.

“She knows he doesn’t have anything,” she murmured apologetically. “She’d just feel better, being sure.”

I stared at her, dumbfounded.

Five years of despair converged in that moment, deflecting all rational thought. Five years of analyses and treatments, of therapies and exercises and approaches with scant, disheartening result. Five years of pleading for unknowable answers to empty, futile questions, of desperate promises to an unwavering God; five years of battle with an unfathomable enemy, an enemy that, despite all our efforts, was winning.

I snatched back my hand and leaned forward, my body trembling with rage.

“I don’t give a rat’s ass about making her ‘feel better,’” I hissed. “She was supposed to be protecting my son, not the other way around! Natalie knows how to avoid being bitten by her brother and she’s only nine years old. Don’t you dare talk to me about making her feel better!”

*****

I understood powerlessness then, the lost flailing in the dark, the stifling weight of anger ill defined. I knew the bitter truth even as I was lashing out, heaving the burden of my grief on the only person at hand: there was no one to blame for what was happening to my son, no reason to which I could fasten my rage and my awful, consuming despair. To accept the true answer, the impassive certainty that life isn’t fair, was almost unbearable; to recognize that however loudly I screamed, the world would simply shrug in reply, and go on.

As painful chapters often do, that one served a purpose. From the wreckage of those days I found direction, and learned to channel the energy of my outrage more productively; to set aside the haunting questions whose answers, if they exist, will do nothing to change what we’re living with now. The issues of why and how will always be with me, but I exist with them more peacefully now.

I still probe the darkness now and then, but my son needs my presence here.

I need to live in the light.