regret – Good Marching

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 - September 15, 2015September 15, 2015

Camels in Wisconsin

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 - May 8, 2015

Two Rooms

The first time I visited the place where I would leave my mother for the rest of her life I knew I had been there before.

It wasn’t physical similarity to an earlier place that brought this sense of déjà vu. The room had no colorful alphabet, or calendar, or map of the United States. No adaptive technology devices, unless you counted the wheelchair straps securing their frail cargo. There were no computers with modified touch screens, or work desks tailored for special students; no vocational training stations for teaching skills that aim, someday, at employment.

But I knew this room. I knew this feeling. I had been here before.

****

She didn’t recognize that she was moving, that her ride in the Medicar that afternoon would terminate at a new facility better equipped to handle patients advanced as far as she has in this disease. She is unaware that she is surrounded now by strangers, caregivers to whom we entrust her welfare, her reliance on others complete. Protected, at least, by this disease that strips all else – character, autonomy, achievement – my mother is spared knowing that these rooms will house the conclusion of her days.

She has been gone for many months now, lost to the appalling affects of Alzheimer’s.

I tell myself – for how can I know? – that the worst days are behind her; the confusion, the agitation, the gradual, insidious losses chipping away at her hold on the qualities that had shaped her: her talent as a fashion illustrator; her style sense and skill as designer and seamstress; the classic looks that made her, always, the most beautiful woman in the room. She doesn’t appear to mourn these losses. The disease which has stolen these things has the grace to blunt the pain of their passing.

I remember, though. In that tour of the nursing home, the dayroom filled with fading ghosts who share the vacant gaze of my mother’s eyes, who slump and gape and shout and moan, I knew unsparingly what my mother has lost. My mind silently rebelled: “It can’t be that she belongs here, that this is what a life of vibrance and accomplishment has come to. Not my mother…”

And there I was again, in that other room, which I’d visited eight years earlier, several weeks after I was told that the special education program in our home school had proven insufficient for the level of my son’s disability. There were other programs, alternate classrooms, that perhaps we must consider, which taught not just academics, but life skills…

Of course I knew that this was true. Autism is a profound disorder. Lifelong. I understood. I did. I recognized, I acknowledged, I concurred. Wearing the upbeat smile of mother-advocate, I visited the Education and Life Skills classroom prepared, I thought, to embrace whatever was necessary to help my boy.

The staff was warm, nurturing as they cared for and educated these special children, some in wheel chairs or leg-braces, some who did not speak but communicated by other, atypical means; conditions familiar to me but more threatening as a whole, a strange society my son was bidden to join, branded now as one of the collective of the disabled.

But the peculiarities of my child were not to be permanent, you see, because things would change, somehow — they would. It would be different someday for my boy. My son would be the exception, the miracle…

They had just finished lunch, in their contained world-classroom, and a scattering of potato chips lay on the floor beneath their table, unremarkable, certainly, following an elementary school meal. Yet my whole world came down to that pile of spilled food, the mess and disorder and hopelessness it represented, the gaping maw of an alien world.

Banishing the image to the attic in my mind reserved for such troubling realities, I continued with the orientation, nodding at staff, commenting; agreeing, agreeable, numbed by the cunning strength of denial.

My shelter of self-deception gave way that evening as I struggled to clean another spot from the carpet on the family room floor. Andy found me on my knees, scrubbing frantically at a stain I knew would be permanent, and he said, “Hon – what is it? Let me, I’ll do that – ”

“Not my boy!” I screamed. “Not my boy! Oh God, not my boy!”

****

I’m told my mother has adjusted well, cocooned for the most part in her impenetrable world, but smiling from time to time. Perhaps she remembers some earlier pleasure: a favorite pet, my father’s touch, the enduring tune of a well-loved hymn.

Images flash now through my own memory: a turquoise party dress she’d sewn for me, and the perfectly matched shoes she found, triumphantly, on sale in Fields’ basement; my mother weeping as she cradled our lifeless terrier at the side of a rural Minnesota highway; her knowing smile when I was five years old as I told her, solemnly, that I’d never get married, because I would never leave her.

My son laughs frequently, and often I don’t know why. But his joy is infectious, and we laugh with him. Vacation days so eagerly anticipated by other children are more difficult for him; he misses his classroom. The routine, the schedule, the pre-vocational training at which he excels, have given him an independence I once despaired of ever seeing.

I don’t know if he senses the enormity of what this disorder has cost him, if he recognizes in his own way that there was once more to be hoped for.

But I don’t think so. Insulated from such doubts and questioning and regret, he is happy in the world he knows.

I will remember this.

My mother died on April 28, 2005, at the age of 78.

by Kristen - July 25, 2014

Family Togetherness

George Burns once said that happiness is having a large, loving, caring, close-knit family in another city.

In that case, my husband and I are ecstatic.

Andy has such a family, spanning multiple cities near and far. We all get together in July at an annual party my in-laws have hosted at their Michigan cottage for over three decades. This close-knit group takes family seriously, gathering for Independence Day whenever the circumstances of their lives permit.

I’ve been attending this party since 1998, that first summer when we were “Andy’s girlfriend and her eight-year-old daughter.” His family’s generous welcome swept Natalie into a tide of exuberant children as I was embraced by grown-ups thrilled that cousin Andy had finally found “the one.”

The party has been a focal point of my summer for years. Yet it’s been years since I felt truly whole at this model of family togetherness. It’s been years since Daniel has been with us.

***

Days of list-making and strategizing helped quell my apprehension as I prepared for those weekends, and the unpredictable outbursts that marked Daniel’s life, especially in an unfamiliar setting. No excursion was simple with my special little boy, least of all traveling three and a half hours for a long weekend away from home. I knew my son’s quirks and needs would likely trump my fantasy of a breezy weekend together. But those trips to Michigan were the only vacations we took back then, and we looked forward to them, particularly my husband, whose business keeps him busy from March through Labor Day. This is the only weekend he takes all summer to enjoy his parents’ cottage and see his extended family. It was an effort well worth making.

I never really relaxed on those trips, running after Daniel and monitoring his conduct, aware that his unusual behavior can be intrusive. It was exhausting, in fact, keeping him on track and occupied, his interests so often at odds with the agenda at hand, cut off from the stability of home and routine.

It was worth it to me, though. Of course it was. We were attending a family party, and Daniel was part of that family, too.

And Daniel loved the cottage, racing down the wooden steps to the long stretch of beach, smoother than the rockier shores on the Chicago side of the lake, free of disquieting, public crowds. He ran up and down the sand for hours, mesmerized by the pulse of waves across his feet, delighted by the splashes he made, again and again, tossing sticks and pebbles into the lapping water.

I didn’t mind chasing him when he strayed too far, bundling him in a towel and checking for sunburn; climbing the steps for bathroom breaks, cooling him with juice boxes and damp cloths to his forehead, then following him back to the beach for another round.

I didn’t begrudge Andy’s absence during those long afternoons, as he led the party’s golf tournament at the local course. He needed those unburdened hours, reconnecting with cousins he’s kept close since childhood. I got to know the beach-going contingent, through snatched conversations as I followed Daniel’s erratic motion up and down the shore. Supervising him was becoming a two-man operation, but I could still manage him by myself for an afternoon.

Until the inevitable breakdown, stoked by sun, sensory overload, and a boisterous, unstructured milieu. Daniel’s changes of mood, his wild, sudden tantrums, were nothing new, but more difficult to weather away from home. I’d hustle him to our bedroom and a soothing bath, lay quietly with him across the bed, stroking his back and singing softly against his ear until he finally settled and calmed.

By which time he was ready to leave all together, just as the evening of the all-day affair was getting underway. He’d pull me repeatedly to his travel bag, asking for home, or make his way down to the car when my back was turned, until at last I’d get him to sleep, and could rejoin the party for its few remaining hours.

***

I don’t remember making the decision to leave him behind, secure in the knowledge that he’d enjoy himself, as he always did, at his father and step-mother’s home. Perhaps I reminded myself that he would in fact be happier, no longer forced to endure an event which ultimately left him overwrought and overwhelmed. One year we simply conceded that the sprawling, festive party the rest of us enjoyed was not right for my son, however much I wanted it to be.

It was the right decision. I know this. The rest of us needed down time, freedom, for Andy to reinforce the relationships he’s maintained through his lifetime, for Natalie and I to find our places in the family we now called our own.

But the party was never the same, for me, without him.

And I understand now that the party was never the same with him, either, never matching the scenario I’d imagined, the nurturing, familial experience I wanted so badly to find in this occasion, for both my precious children. Autism had already shredded the screenplay I was still trying to direct; I was merely clinging to pages of an untenable script, unwilling to accept that my family could never enact the story my heart had written. This happy party scene had already been scrapped from the film of our lives together. I just wasn’t ready to let it go.

***

The parties are easier for me now. I can engage, and laugh, and converse, and, in recent years, help run the whole companionable show, unencumbered by my son’s needs and demands, my simmering worry that he’d turn miserable and unreachable in the midst of all the wonderful togetherness.

I still remember, though, the moments when he was happy there, lulled by the motion of waves and the warm sand beneath his feet. I remember his joy as he ran to toss another stick across the water, pleased with his accomplishment, twisting his fingers in front of his face as he does when he is happy. I wish those moments could have lasted, could have been enough to make the experience whole. But they are what we have, and I cherish their memory.

A few years ago I called to tell Daniel’s group home director that I wouldn’t be visiting that weekend because I’d be in Michigan for a family reunion. I described our earlier visits to the cottage, how we tried to make those weekends happen in spite of Daniel’s limitations.

“He loved it there, Sam,” I told him. “He loved the beach, if just for a little while.” My voice broke with unhealed regret. Daniel had been going through a rough patch in recent months, and I felt guilty that I wouldn’t be visiting. “I just can’t accept it, that he may never see that beach again.”

Sam was silent for a moment, then spoke with the quiet confidence that always reassured me.

“You’ll get him there, Kristen,” he told me gently. “It may take 15 years, but you’ll get him there again, someday.”

I’m holding on to that script for now.

There are still scenes of our lives yet to be written.