transition – Page 2 – Good Marching

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 - January 21, 2015January 21, 2015

New Light

When my son was ten years old I read an essay by Chicago writer and educator Robert Hughes, “Getting to Know the Family Savant.” He described the painful process of abandoning the “great cosmic myth of compensation”: that autistic people are automatically gifted with some extraordinary genius — a talent for music, an aptitude for languages, a startling, photographic memory.

Instead, Hughes gradually realized that his son Walker’s true gift was simpler, but no less valuable: his exuberance for life, his innate, irrepressible joy, visible “…on the face of the beaming boy himself, the knack for happiness he had then and has still.”

I was so moved by the essay that I wrote Mr. Hughes an embarrassingly long letter, thanking him for helping me recognize that, despite the devastating diagnosis of autism, my son, too, was happy; he was, in fact, the happiest person I knew.

I held that belief for a long time. Despite his ups and downs, his extreme behaviors and outbursts, Daniel still seemed, for many years, satisfied with his life, unconcerned with what the wider world had to offer. I consoled myself, believing he was content, secure, and confident that he was loved, that his autism even insulated him from the conflicting and messy emotions the rest of us regularly endure.

Over the last few years, though, my faith in that scenario has eroded. As the degree and frequency of his outbursts increased, as his quirks became rigid, limiting obsessions, as the scope of his world devolved with each passing week, I began doubting that he could possibly be happy at all. His behavior was screaming otherwise.

****

Never than in the past twelve months have I felt more powerless to help my son. After an exhaustive search for his adult home, last January we selected a highly recommended care agency with a reputation for success with difficult behavior cases like Daniel. As an added bonus, we knew the house director from Daniel’s previous school in Wisconsin. Everything pointed to the positive and forward-moving experience we so wanted for our son.

Yet it didn’t materialize. We soon recognized a pattern of erratic response from management to our questions and requests, from the very house director in which we’d placed such faith. From home maintenance to haircuts to implementing the active and engaged lifestyle promised for Daniel, nothing panned out as planned.

His challenges became more entrenched than ever, with alarming new behaviors, like “elopement,” or bolting from the house, emerging after just a few months. His day program, designed to provide purposeful, satisfying activity, fell through as his beverage-stealing obsession disrupted staff and clients alike. By August he remained at home almost all the time, with little stimulation to channel his energy or the intelligence I’ve known for years he’s possessed beneath his unpredictable exterior.

No one in our family was satisfied, none of us willing to accept that this was as good as it would get for our cherished son and brother. As parents in our situation understand all too well, however, the “obvious” solution — move him — was anything but simple. Resources for people with Daniel’s challenges are scarce and hard to secure.

And even if we found an alternative, what impact would another move so soon have on Daniel, tearing him from the day to day caregivers whose devotion to him was never in question? How would he react to another transition of this magnitude? And the most haunting question of all: what if it still didn’t get better?

We’d given this agency more than a fair shot at managing Daniel’s needs, though, lending our support in every way possible. Waiting and hoping that life would improve for him there was no longer an option.

As it happened, another agency we’d seriously considered a year ago had kept in touch, their case manager checking periodically during the past twelve months on Daniel’s progress and adjustment to his new situation. When our advocate from Wisconsin’s Department of Aging and Disability inquired in early November about Daniel’s possible transfer to their care, the case manager was enthusiastic, and immediately set the complicated application process in motion.

The ensuing weeks passed in a cascade of emails and phone conferences; discussion with the new agency and tours again of their facilities; a follow-up visit and in-person reassessment of Daniel at his current group home; and anxious, breathless days of waiting, of questioning and speculation, of daring, again, to hope that we might find the right path for our son.

In mid-December the case manager delivered the news: the new agency in Racine, an hour closer to both my husband and me, and Daniel’s father and step-mother, was willing to rearrange their current staffing and housing openings to accommodate Daniel, and offered him a place at one of their adult family homes.

They actively wanted our son. They saw his potential, and believed they could help him achieve a fuller quality of life.

****

It’s been two and a half weeks since the bitterly cold day Daniel’s father and I said goodbye to him at his new home, a well-maintained, carefully decorated house on a quiet residential street. His bedroom had been outfitted with new furniture, bedding, and artwork on the walls, a flat-screen TV and DVD player set up and waiting. Staff was in place to welcome him, ready to manage whatever behaviors he threw their way, their philosophy of inclusion, of continual activity, stimulation and involvement in the community, regardless of challenges, an encouraging change from the restrictive environment Daniel had grown accustomed to in the past year.

Just hours later I received a “selfie” of Daniel and his case manager, Aaron, the man who had, in the week before the move, twice traveled an hour and a half to take Daniel on short excursions, so Daniel would know him and be more comfortable in his presence. I couldn’t tear my gaze from that photo, Daniel’s face bearing the hint of an intrigued smile, as though he and Aaron were already sharing an adventure, something new and exciting and worth exploring.

The very next day Daniel went to an indoor water park, an activity he hasn’t enjoyed in years. An emailed photo showed Dan waist-high in the pool, Aaron’s hand resting on his arm, guiding him, literally, through new waters with gentle, calm assurance. One week later, another pool photo: Daniel smiling broadly, confident, on his own in the pool, his face open and sparkling and alive, his eyes radiant with joy.

He’s made successful trips to restaurants, to Target and Sam’s Club and Starbucks, to a local museum; he navigated a company-wide “social” at a roller rink, only moderately distracted by the concession stand, which once would have derailed him completely. These modest outings are huge for my son, whose compulsive behaviors had just weeks ago nearly eclipsed life outside his group home. They are the activities we’d imagined for him, chances to discover, to grow, to be part of the larger world.

****

I approach hope sideways these days, wary now of plunging recklessly into the shimmering light of dreams, of believing too soon in the possibilities I want so desperately for my son. The last year cured me of that, trusting in a shiny new beginning that became instead a slow-motion crash, each incremental slide more devastating than the last.

Yet there is no mistaking the new light in my son’s eyes, the expectation and curiosity that’s been missing for months. He seems to recognize already that he’s on a new road, a different journey he is eager, now, to travel. He is responding to staff’s repeated assurances that he is their “great guy,” their “kind guy,” their “happy guy.”

I hardly dare to believe it, but it seems to be so.

He is my happy guy again.

Robert Hughes responded to my letter in 2002 with a thoughtful letter of his own. His kindness encouraged me to keep writing ever since. His memoir about life with his son, “Running With Walker,” is available here.

by Kristen - October 21, 2014

Taking the Long Road

Photo: Doug Bradley

Last week I attended a local forum on intellectual and developmental disabilities, co-hosted by State Senator Julie Morrison, the woman who set me on the path to my current job in local government.

Four years ago, when serving as West Deerfield Township Supervisor, Julie asked me to join a committee on a grant program the township was initiating to help its disabled residents gain better access to the community. Participation on that committee eventually led to my appointment, then election, as Town Clerk, a position I’ve enjoyed for over three years.

While at the forum to represent the Township and its grant program, I was also there as a parent. It was an interesting perspective.

The forum focused on housing, employment, and helping people with disabilities achieve their individual goals, providing information on programs and services available to assist in these areas.

Most of the information I’ve heard before, many times, having attended countless similar workshops and presentations over the past 20 years. Listening to a social worker summarize of the maze of federal and state resources — and knowing first hand the red tape involved in securing those resources — it occurred to me that repeated exposure to these explanations is necessary before they sink in and begin making sense to parents who are bewildered and overwhelmed by the whole confusing process. At least that’s the way it worked for me.

It took several years just to wrap my head around the unwelcome reality that my son would one day require such services. Even as I started absorbing bits of information, acronyms like “PUNS” and “CILA” and “SSI”, there remained a self-protective film of denial across my consciousness, allowing me to cling to the fantasy that one day he’d grow past the need for these frightening, complicated systems, and it would all simply go away.

Slowly, fitfully, though, we accepted that Daniel would most likely require residential care some day, and began researching his options more than a dozen years ago. As my friends in the special needs community understand all too well, finding and securing crucial funding and services for disabled persons is a long and complicated journey requiring expert, experienced guidance, and very often legal counsel.

In retrospect, we were fortunate that Daniel’s level of disability was profound enough to secure the services he needed without protracted, expensive litigation. Even with extensive modifications to the special education program within our home school, our district acknowledged that they could not adequately or safely educate him. Just over three months after his first day of sophomore year in high school, Daniel moved to a residential school for developmentally disabled children and teens in Wisconsin.

Fortunate, of course, is a relative term. While I’d accepted that one day Daniel would need a higher level of care than we could provide at home, I didn’t expect that day to come when he was just 15. I imagined his transition as a young adult, when he’d be “ready” to leave home and begin building a semblance of independent life.

But those are regrets for another blog.

What I didn’t anticipate last week was how painful listening to descriptions of various programs available to disabled people now would be. As the parent of a child who desperately needs such services, it should have been a positive, encouraging experience.

And in many ways it was. It was gratifying to learn of the job training, skill building programs now available to foster independence, the innovative housing opportunities emerging in response to the fast-growing population of adults who need various levels of assistance to live their fullest lives.

As the parent of a profoundly disabled young adult, I was inspired by the room full of professionals dedicated to enhancing the lives of people like my son, and the other parents who share my quest for the best lives for their children.

But as the parent of my profoundly disabled young adult, it also broke my heart, knowing that at his current level of ability, most all of the programs described — even those painstakingly facilitated, adapted, and governed by one-on-one care — remain beyond his reach.

There was a time when these programs were what I aimed for: modified, humbler experiences, but still within the “second-best” realm of what my friend David Royko so aptly calls “hopes adjusted downward.”

These days, however, his behaviors bar him from participating in even the most carefully controlled community involvement, a far cry from the programs described, which offer meaningful work and social opportunities. As grateful as I am for the strides being made on behalf of people like my son, my heart is heavy that he cannot, at this stage, participate in them.

I learned I wasn’t alone in feeling this way. During the presentations I took a break for a few minutes, and met in the lobby an acquaintance whose nephew is affected by the kind of severe autism that affects my son. Her eyes were brimming as she confessed that she couldn’t take hearing it all, aware that her nephew would most likely never partake in the programs described so glowingly, so positively, yet still beyond the constraints of his brand of autism.

Perhaps selfishly, I was comforted to know I wasn’t alone in my meloncholy.

Ironically, my favorite presenter at the forum was the man who’d squashed my hope of bringing Daniel back closer to home when he turned 22 and entered the adult disabilities system. The intake coordinator for a major network of Chicago-area residential facilities, we’d consulted him over two years ago, before we made the difficult decision to keep Daniel in Wisconsin, where services outpace those in Illinois two to one.

He told us the truth two years ago: that despite Daniel’s demonstrated need for residential housing, and thus the likelihood of his receiving some of the scant funding available from the state of Illinois, he’d be at the bottom of the list of potential clients when petitioning facilities for his placement. His behavioral history would always precede him. With waiting lists years long, the most desired facilities can pick and choose their clients, and few would be eager to pick my son.

It was crushing news to hear. Yet it was the beginning of a painful but necessary process of letting go, relinquishing a dream I’d held dear for six years, and looking beyond to what was available now.

Attending the seminar brought home again how deeply Daniel’s autism has impacted him, how limited his life remains even within the disabilities community. But it also reminded me how far we’ve come.

Recalling those early days of despair, those frantic, panicked moments as I tried to absorb the onslaught of information and bureaucracy, of endless forms and questions and boxes to be checked, I’m able to appreciate that I’ve made it this far. It’s not where I hoped to be, but the road still lays before me.

That’s the bad news, and the good news, as well. The journey is far from over, but I pull strength from the miles I’ve already travelled.

It’s a long road, indeed. But I’m not walking it alone.

For information on West Deerfield Township and its Accessibility Grant Program click here.

by Kristen - October 9, 2014

Stolen 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.

by Kristen - May 30, 2014

A Good Bad Hair Day

I’d really like to stop caring about my hair. It’s been the bane of my existence for years, rarely turning out the way I want it to except when I have nothing more exciting planned than a trip to the hardware store.

But while I do spend a tedious portion of each day with my blow dryer, I’m no longer bothered if the results aren’t perfect. With age comes wisdom: my hair really won’t change my life, or even a moment of my day.

I wish I could adopt a similar attitude about my son’s hair. Despite of an array of more serious concerns — aggression, bolting, beverage stealing — I still care about appearances. His appearance, anyway.

Daniel’s disability overruled the reticence regarding children instilled in me for years by my mother. In her view, displaying pride in her children was a recipe for losing face, an invitation to all manner of embarrassing failure she’d rather avoid until she “saw how we turned out.” Not once do I recall her praising me to another person.

But autism granted me permission to claim one small advantage in my own child’s favor when the odds were otherwise stacked against him: He is physically attractive.

Were she still alive, my mother would be aghast. But I say it unabashed: My son is beautiful. He has that going for him.

His teachers adored him, cuddled him, and melted at his smile. They loved his hip, laid-back style in the trendy clothes I chose for him. Friends and strangers alike commented on his looks, perhaps able to summon nothing more substantive to say about a child whose eccentric behavior left them bewildered and tongue-tied.

I didn’t mind that their praise was superficial. If Daniel’s looks gave him even the slightest edge as he faced the world, I welcomed that edge. Playing up his physical appearance was one job I could manage successfully as the rest of our world spiraled out of control.

Letting go of that job six years ago was a loss I still experience. We’d come to accept that residential placement would someday be necessary, but didn’t expect his escalating behavior to force that outcome when he was still a teenager, when he was still, in my heart, my little boy.

I didn’t know then how achingly I would miss the tangible care of my son, the proximity to tend to details he’d otherwise neglect, the tender, intimate routines on which we’d built our relationship together.

I miss supervising his shower, scrubbing his back as water splashed my face and clothing, reminding him to keep rinsing until his hair was clean. I miss bundling him in a towel in the steamy bathroom, fussing over his complexion and combing his hair, trimming his nails as he sat fidgeting on the edge of his bed.

I miss washing his favorite pajamas every day so he’d never have to sleep without them, checking that his jeans weren’t too short and his dark T-shirts didn’t fade in the dryer.

I miss his shy, satisfied smile as he’d inspect his reflection in the salon mirror, brushing his fingers across his freshly trimmed hair.

I miss being close at hand, ensuring that my son is not dismissed by a world that sees only autism’s messy side-effects, making sure that he is treasured, and honored, and cared for.

And he is cared for. Well cared for, if not to the standards I once maintained so diligently. His adult family home is staffed by professionals who do their jobs well, taking care of my son as they are hired to do. They seem genuinely fond of Daniel, too. Despite his quirks and alarming behavior, he still charms nearly everyone he knows.

There was just the little problem of his hair.

Months after moving to his new group home Daniel’s hair still had not been trimmed. We offered to find a barber ourselves, but were assured by his home director that he’d take care of it. With so many other concerns vying for attention, it was easy to let a haircut slide.

Luckily for him, Daniel has his father’s hair, a glossy, medium brown, that on a typical 22-year-old would look fashionable curling so long around his neck and across his forehead, à la Josh Groban.

But Daniel isn’t typical. Instead of a studiously careless, tousled look, his hair was just tousled. Disheveled. A mess, really, even as staff tried their best to keep it at bay.

I don’t know why something so trivial came to bother me as it did. We’ve had plenty of more pressing challenges to contend with since his transition from residential school to adult family home.

But maybe that is the answer, right there. He is growing up, every day growing further from my care, from holding him close, tending to his needs on a regular, comforting basis. We’ve been traveling to adulthood for years, but I’m not ready yet to let him go.

Daniel’s hair had finally been cut the last time I visited him. It is a singularly awful haircut, his worst since my own attempts when he was three years old.

But that didn’t matter.

His caregiver couldn’t wait for me to see his new hairstyle, smiling as I cupped his face and stroked his forehead, visible again at last.

She was thrilled when I commented on his sparkling white henley, a welcome change from the worn-out, orange mesh garment that, for reasons known only to Daniel, he’s insisted for months on wearing whenever he knows I’m coming.

Eagerly she described how she’d coaxed him into wearing the new Nikes I’d bought him weeks ago, which he’d thus far refused to even try on.

She was beaming with pride at how handsome my son looked for his mother.

His haircut didn’t make a difference, after all.

But the woman caring for him did.