memories – 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 - March 5, 2015

Somebody That I Used to Know

Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office. There, a woman about ten years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cell phone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me. My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions, and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”

It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now, and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness, my grief at having lost him once already, a grief that has never fully healed.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life, and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly mine, before autism tore us apart; when his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years to get him back, even as I’ve known this will never be so. The son I once knew is gone for good.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the blessed, coveted freedom from the demands of caring for him, the opportunity to breathe again, to have my life again as my own. I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance, by the insidious disorder that brought us to this place. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son is now a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is the sense that the best days with my son ended seven years ago; it is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him.

I can’t see myself any other way.

by Kristen - December 22, 2014December 22, 2014

Train Wreck

My husband’s parents sold their house last year and moved to a condominium nearby. We’re relieved that the move is behind them, and they’re no longer burdened by maintaining a home more spacious than they need.

I miss that house, though. It was stunning. When Andy and I got married nearly 15 years ago, his parents hosted our reception there, the elegant foyer with its wide, curving stairway providing an idyllic backdrop for toasts and tossing my bouquet.

I remember the first time I took my children to that house, on Christmas Eve a year before Andy and I were married. I was still getting to know his parents and two sisters then, seeking my place in their family and hoping they liked me as much as I liked them. They’d met Natalie at a family party the summer before, but were meeting my son for the first time that Christmas Eve.

The evening had all the makings of a magical Christmas, especially for my children. The house was glowing with lights and decorations, full of welcoming family members eager to include us in their celebration.

The Christmas tree, 14 feet of Fraser Fir soaring in the two-story foyer, rivaled those on display in Marshall Field’s Walnut Room. A life-sized stuffed tiger with a red ribbon around its neck sat waiting for Daniel under the tree.

Andy’s father had added a new component that year, an electric train set he’d always dreamed of, and set it up to encircle the tree, an engine and six quaint cars chugging along the 25 foot perimeter of the handmade tree skirt.

“We better keep an eye on Daniel around the train,” Andy murmured as we arrived at the house. “It’s sort of Pop’s pride and joy.”

Wonderful, I thought miserably. I was already anxious about his family meeting Daniel, my beautiful but erratic little boy, whose unpredictable behavior kept me constantly on edge. Andy’s parents had no grandchildren, and I imagined my son barreling across their pristine, polished floors, shoes scuffing as he knocked vases from pedestals and grabbed gum drops from antique candy dishes. Now I had to worry about him breaking an expensive toy train I knew he’d find fascinating.

But it wasn’t only Daniel’s behavior that had me so anxious that evening. I recognize now how vulnerable I was back then, struggling to find my footing as a divorced mom, a role I’d never dreamed I’d end up playing. My father had died a year earlier, and my mother was showing the first signs of Alzheimer’s disease. Keeping my little family together on my own was exhausting, balancing the disparate needs of my children while trying to salvage the stability we’d rob them of when their father and I divorced.

The pressure I put on myself to make this happen was crippling, but I thought that was my role to play. The least I could do, my most important job in the world, in fact, was making Christmas happy for my children. Christmas had to be happy, it was supposed to be happy, and I would make it so if it killed me.

But playing my other new role at the same time was almost too much for me: the new girlfriend, this time with kids, one with special needs. Fiercely proud of my son and daughter, I was still hyper aware of their behavior, and my own, measuring our conduct by a self-imposed standard of respectability and gentility I so wanted to achieve in the eyes of my boyfriend’s gracious family.

As the evening wore on, I was hanging by a thread, smiling, nodding, my most charming self on display for these people whose approval I sought, while inside I was screaming, breaking apart, desperate for this God-forsaken Christmas to be over so I could relax and let my guard down at last.

So much of those early years was like that for me, trying to control the events of my life but often tainting the very memories I wished to cherish. Holding so tightly to the reins, I sometimes lost sight of where I had wanted to go. Many times I succeeded in spite of myself, holding it together for my children, providing the experiences I had always wished for them. But the cost to my psyche was high. Anxiety became an integral part of me, and letting go of it, especially around the holidays, is still a work in progress.

As it happened, Daniel did enjoy the train that Christmas, watching intently as it made its way around the track, wiggling his fingers in front of his face as he does when he is happy. He did nothing to disrupt its smooth operation.

But I did.

Leaning close to the tree to admire an ornament, my toe collided with the train’s engine, pushing it and the next three cars off track, bringing the whole happy unit to a halt. The laugh was on me after all.

And I’m glad. It was the first real laugh I had all evening.

by Kristen - December 10, 2014

One True Gift

As the parent of a teenager learning to drive I was an utter failure. When Natalie took the wheel I was such a basket case that she soon banned me from accompanying her. Instead, my husband took over, guiding her on trial runs in the St. Patrick’s Church parking lot, hopeful, perhaps, that God would protect them both.

Natalie proved to be a fine driver, however, while I remained a lousy passenger and unhelpful critic, clutching the dashboard and hissing in alarm as we neared other cars. It’s a testament to her self-confidence that Natalie learned to drive at all.

She’d had her license for several months when she offered to take Daniel for ice cream one evening. I stood on the grass as she backed down the driveway, shouting advice and directions, gesturing like a crazed traffic cop as she veered toward our neighbor’s lawn.

“You’re not helping!” Natalie yelled out the driver’s window as she inched toward the street.

“Be careful!” I cried redundantly.

“Yeah, yeah, yeah!” she yelled back, waving me off.

“Both hands on the wheel!” I bellowed in reply. “I mean it now!”

As she shifted from reverse into drive, I observed Daniel in the passenger seat, eyes scrunched tight and hands over his ears, desperate, no doubt, to block the din of our banter. But as I teased Natalie later, it was as though he couldn’t bear to watch as he placed his life in his sister’s hands.

Eighteen months later our mood was less jovial as we moved Daniel to a residential school an hour and a half from home. He was fifteen years old. Seven years ago today I let go of my son, placing his welfare in the hands of people I barely knew, relying on faith that we were doing the right thing for our cherished, special child. It was the most painful thing I’ve ever done.

I had several months to prepare, to accept that he could no longer be educated through conventional special ed channels, or safely cared for at home. The school we’d chosen was highly regarded, known for its success with students with behavioral issues. We toured and met the staff, asking every question we could think of. I talked to friends whose own son resided at the school, comforted by their positive experience. We were as confident as we could be that we were making the best decision possible under difficult and heartbreaking circumstances.

Yet there was no real way to prepare Daniel for the life-change ahead, to explain that our actions had his best interest at heart, that we’d done everything we could and it was still not enough. Words could not convey to our non-verbal child our profound love as we left him, in an unfamiliar place, his care now in the hands of others. My dark fear that he’d believe we’d abandoned him almost broke me as I clung to the fragments of my tattered, trembling faith.

After Daniel’s move I rarely practiced that faith, traveling to Wisconsin most Sunday mornings to visit him. In truth I was glad for the excuse to leave the church behind. My parents were both gone by then, their memories filling the space they helped build before I was born, the church of my childhood now imbued with more sorrow than comfort, awash in reminders of all that was lost too soon, the old hymns and liturgies haunting in their constancy, vestiges of what I once believed invulnerable.

A few weeks ago my nephew Ted was scheduled to read scripture at that church, which he attends regularly now, and Andy and I went, too, to be with him. It was the first time I met the new pastor, installed just six weeks earlier.

“They say ‘America’s Got Talent,’ but I beg to differ,” she joked in her sermon, noting that reality TV rarely depicts a truly useful skill, a precious gift, or a worthwhile endeavor.

“The high school teacher who makes algebra come alive—that’s talent,” she continued. “The farmer who coaxes seed into food. The musician who brings tears to your eyes. The parent whose children know they are loved.”

I missed much of what came next, suddenly back seven years to the third night after we’d left Daniel in Wisconsin.

We’d spoken every day to his floor manager, Kip Kussman, whom Daniel had taken to immediately, learning of his first days without us. So far he’d adapted remarkably, Kip told us, better than most new residents. We’d been advised not to visit for thirty days, but Daniel was adjusting so well that Kip thought we may be able to come sooner, possibly for Christmas.

My voice broke with relief and gratitude as I thanked him.

“Daniel is going to be fine,” Kip assured me. “He is secure in a way I don’t see very often. This is a child who knows that he is loved.”

I doubt Kip will ever understand how much those words meant to me, that they remain the most meaningful thing I’ve ever been told.

For all the ways I felt we’d failed him, we had given Daniel that one gift.

He knew that he was loved. He knew that we would come for him again.

It’s been a turbulent few years with my son. I wonder sometimes if he still knows the depth of my love for him, how I treasure him despite the distance that separates us, if he remembers the love I could once demonstrate each day, waking him in the morning and seeing him to bed at night. I wonder what my weekly visits evoke in him, if they are like the old liturgies of my childhood, stirring memories of faith once held without question, the melodies now echoing both loss and promise.

Does he know me, still? Does he remember? Have the seven years he’s been gone blurred his sense of me, or do I remain one thing he knows to be true, to be constant, no matter what? He asks for me, but what is he seeking now? Does the memory of my love wound in my absence, or is it one true gift that distance cannot diminish?

I don’t know the answers for sure. But I keep faith that he does know, that he has always known, that I am with him, that he will always, always be loved.

by Kristen - October 30, 2014October 17, 2016

A Treat to Remember

If I could do my life over, I’d be a party planner.

There are few things I enjoy more than preparing a celebration, like the Halloween party for children with special needs I led for our Township last weekend. I spent weeks arranging details for crafts, games, decorations and snacks so the event would run with ease. Thanks to a host of generous volunteers, I think it did.

Celebrations with my own family, however, didn’t always pan out as planned. The blueprints for gaiety unrolled in my mind were rarely executed as intended by my little boy with autism. He had his own ideas.

Take birthdays, for example. I strove to make them festive occasions in our household, involving favorite meals, helium balloons, and a musical birthday plate for the guest of honor.

Daniel, however, was unimpressed. One year he actually developed a physical aversion to birthday cake. He wanted no part of the homemade confections brought forth for other family members, shoving his slice away with the back of his wrist, lest the offending substance touch his bare hand.

Undeterred, I concocted for his own birthday a dessert comprised solely of Daniel-approved foods. When the big moment came, he regarded the lopsided, cake-shaped mass of whipped cream and Oreos with a striking lack of enthusiasm, but deigned to blow out the candles and accept a slab without bolting from the table in horror.

I nearly wept with joy.

Halloween, on the other hand, was one celebration I could count on to at least resemble the normal-family ideal I aimed for when my children were young.

Daniel learned quickly that orange decorations meant a trip to Didier Farms, where he opted without fuss for the first pumpkin he saw. He enjoyed the Jack-o-lantern creation process, squeezing the slick pulp between his fingers, planting the votives firming inside the hollowed shells, then sitting outside, arms crossed and focused, to study the flickering candlelight winking from the pumpkins aligned by the door.

He tolerated every costume I devised for him, ranging from baby cow to cowboy, green M&M to white, floaty ghost. He expressed no preferences, but never balked at my selections, even the regrettable Mr. Potato Head ensemble of 1997, a choice, bitterly scorned by my daughter, which I’ll never live down if she has anything to say about it.

Daniel didn’t mind it, though. He marched out the door, clutching his plastic pumpkin with enviable nonchalance, touring the neighborhood with his dad and sister, who swallowed her shame and behaved with typical loyalty to her little brother.

I see them still, their eager, costumed figures heading down the sidewalk as dusk settled in, Natalie holding Daniel’s hand protectively in her own.

“Say ‘trick or treat,’ Daniel,” she coaxed as each door was opened. “‘Trick or treat!’” Sometimes he’d utter a proximation of the phrase, but more often just grabbed for the goods, Natalie issuing thanks for both of them before hurrying to the next house in line.

Described later by their father Jeff, who guided them while I manned our own front door, these scenes are as vivid as if I’d been standing beside them: the warm glow of light spilling from doorways onto their expectant faces, Daniel reaching without fanfare into the offered bowl, Natalie gently coaching him, their unique bond deepening, all on its own.

I couldn’t have drawn a more perfect picture if I tried.

In the blink of an eye Natalie was spending Halloween with friends, and her and Daniel’s step-father assumed trick or treat duty in the new neighborhood we moved to when Dan was nine.

He wasn’t a little boy anymore, but I wasn’t ready to pare down his Halloween experience, even if he showed no great interest in participating one way or another. Of course, I usually claimed the cushy job, parked at home by the front door while dispatching Andy to herd Daniel up and down the street.

This become a bit challenging as Daniel grew older, his abrupt behavior more startling, at age eleven or twelve, to neighbors unfamiliar with his autism. People were sensitive to Daniel’s quirks, though, recognizing his differentness and treating him with tender, respectful indulgence. Few begrudged his mute grabs for candy or lack of thanks, which we supplied on his behalf.

But in just a few years trick or treating held less appeal for Daniel. Having graduated to a more sophisticated vampire costume, he was nonetheless ready to head home after just a few houses, content to pass the evening peering over my shoulder at the children crowding our doorstep, now and then holding the candy bowl himself as careful selections were made.

He was growing out of the Halloween of his childhood, just like his typical peers. I only needed to follow his lead.

I knew what he was missing, though: the “Halloween Hoopla” extravaganza held each year by our park district; the haunted house teens from our church navigated together, shrieking in feigned terror; the noisy packs of adolescent boys, jostling down the sidewalk, eyes open for girls, collecting the loot they pretended not to care about anymore.

These rites of passage were not right for my son, but I mourned their loss just the same.

Daniel had his own game plan, though. He was satisfied with the handfuls of candy he swiped behind my back; the roasted pumpkins seeds he surprised me by enjoying, crisp and salty and warm from the oven; our talking candy bowl with the green motion sensing hand that lunged forward as he reached, giggling, for another Tootsie Pop.

He didn’t regret the pages lost from my Halloween blueprint. He didn’t even know they’d been drawn, and that was all right with him. And so, in time, it became all right with me.

My kids have been out of the house for several years, but I still decorate it for Halloween. It reminds me of those simple, unguarded days, the celebrations that ran smoothly, better than I could have planned.

While publicizing last week’s Halloween party and recruiting volunteers, I often told people that I wish there’d been a party like this available when my son was young, a lower-key event where differences don’t matter, and kids and parents can relax and enjoy the celebration in a setting tailored for their needs.

Yet this isn’t precisely true.

I’m thrilled to lead this event each year, providing an experience that seems to be appreciated by the community. But I wouldn’t change a thing about my own children’s Halloween experiences.

Those memories are pretty much perfect, just as they are.