love – Good Marching

by Kristen - October 15, 2016

Can You Hear Me Now?

My 89-year-old mother-in-law is fiercely independent, a fact reinforced in late August by her failure to call for help after slipping off her kitchen barstool at 11 p.m., painfully injuring her right foot. She didn’t want to bother my husband and me so late, or disturb her neighbors with a 911 response.

Turns out she’d fractured her ankle in three places.

Visiting her in rehab, Andy found her on the nursing center’s patio, her wheelchair parked at a table with three fellow patients, eating a pizza lunch. She’s too polite to express it openly, but my husband knew immediately that his mother didn’t want to be there.

“So they’ve got you out here today!” he remarked with forced cheerfulness. Every Friday the rehab center holds a themed luncheon, like a BBQ or luau. “Must be pizza day!”

A week earlier a nursing attendant had invited her to join “special lunch,” which she graciously declined. That Friday, however, a nurse had simply breezed in, wheeled her to the patio, and planted her with patients suffering from dementia in various stages. Despite her celebrated conversational skills, my mother-in-law found the meal a challenge.

She could have demurred, of course, stating that she preferred meals in her room, but that would have violated her code of courtesy. Reluctant to appear rude or unreasonably difficult, she endured the special lunch experience without causing a fuss, even though it wasn’t what she wanted to do.

It’s painful to picture my proud mother-in-law this way, decisions made “for her own good,” her options gradually diminished by the infirmities of age. Yet she retains the luxury of choice, the ability to exercise preferences, and the authority to express them, should she elect to do so.

I wonder how often my son’s preferences go unheeded, or even recognized. He has lived in structured care for almost nine years, an arrangement inherently prone to conformity, to routine. Yet even when he lived at home I so frequently misunderstood him, or didn’t understand him at all.

How often must he be frustrated by the disorder that has dictated the whole course of his life, unable to express clearly what he’s yearning for, or who he knows himself to be?

A friend suggested recently that Daniel may simply not know any different, or even recognize what he is missing in the typical world. Autism and its attendant constraints is all he’s ever known, after all. He may be more content than I can possibly imagine. Perhaps it is only me who is suffering the weight of his loss.

This argument isn’t new to me. I’ve told myself the same thing countless times, willing myself to believe it true. How much easier than imagining my son trapped in a functioning body and mind, yet unable to direct the events of his life, or follow the path of his choosing.

Of course I appreciate many of his frequent, obvious requests — pop, fries, Denny’s, car — but what more complicated emotions go unnoticed? Does he recognize the vast range of experience beyond the stifling hold of autism, and ache for that world? Or has he simply given up on being truly understood?

As he matures and our relationship changes, I tell myself to let go of these haunting questions, this chronic doubt; to accept the limitations of Daniel’s life, rejoicing in all he is capable of, the joy he demonstrates for the modest slice of life he has been allotted.

Can any parent truly do this, though? Do any of us accept “good enough” for our children, or stop longing to know what lies in the deepest folds of their hearts?

Over time I’ve set aside certain unanswerable questions, stopped demanding an explanation for Daniel’s autism, which, if granted, would change nothing. The ache to know my son is not so easily relinquished, though, this duty I feel to understand and give voice to the unarticulated longings he may have harbored for a lifetime. Who will carry this torch, if not me?

Daniel’s behavior has long been the most telling barometer of his mood, and there is evidence now to suggest that he is indeed content. He appears comfortable in his group home, well-treated by his caregivers, and satisfied with his living arrangement.

Other behaviors are more complicated, his well-chronicled soda obsession the most troublesome example. Is this simply an inexplicable symptom of the disorder, or his desperate bid to control one small scrap of a life orchestrated on his behalf, a life he is screaming to escape? I wonder if I’ll ever live peacefully without the answer, if I am failing him, again and again, by not knowing him as he deserves to be known.

I consider the frequent and meaningful contact my daughter and I share, yet I don’t know all there is to know about her; of course I don’t. I can’t even state with certainty that she is happy; I can only judge by her temperament, the tenor of her words, trusting the relationship we’ve forged over 26 years. Yet, like my mother-in-law, she has the benefit of language, the power to communicate as she chooses.

Daniel and I rely on more subtle indicators to understand one another, like his willingness to let me go at the end of my visits. Often he’ll hasten my departure with a vocal “Bye!,” having procured his extra soda, his sticker book; after a drive together, the Chili Peppers cranked loud and liberating; after he’s reached from his seat behind me to caress my shoulder, reassured that I’ve come back again.

Is this all the fulfillment he needs from his life? From me? Can it possibly be enough?

I want to dismiss my friend’s suggestion as a well-meant but simplistic explanation for something infinitely more complex. Conceding to her theory feels like a betrayal, adopting a convenient, more palatable view of my son’s life to soothe my own loss, my own conscience.

Mustn’t I question, though, if I’m stubbornly projecting my sorrow over Daniel’s circumstances onto him? Is it just me, unsettled and aching, who is hungry for more, as my boy becomes a man?

And I acknowledge, too, that part of me craves the reassurance that he is happy — that both my children are happy — because that would make me happy. Oh, yes, I want that certainty, a gentle easing of the relentless burden of love.

Yet slowly I’m recognizing that Daniel is, in fact, expressing himself, that he is telling me who he is, perhaps even typically.

At times he is the engaged, affectionate Daniel, laughing, relaxed, unhurried, who brushes my cheek for the simple warmth of connection; who will peruse a book by my side as we did for years when he lived at home. Other visits are almost routine, a necessary interlude he endures for my benefit, anxious to return to his own agenda, like any 24-year-old. Even if his agenda includes a sticker book with The Aristocats for accompaniment.

Perhaps my son has been telling me what he wants all along, but I’ve been too consumed by on my own agenda, my own habit of despair, to hear him.

I recall the moment my daughter told me her boyfriend was “the one,” understanding intuitively that she was happy, truly happy, even as her words left me breathless. Is she ready to make this decision? Does she understand the heartache that may lay in store? Yet I realized then the depth of my faith in her, my trust in her to know her own mind.

Can I learn to do the same with my son?

There is no forgetting the disparity between the life he deserves and the life he has. I can try, though, to view his experience with eyes unshrouded by loss, to listen for what he his telling me, free of the weight of unmet dreams. He deserves this much from me. He deserves to be recognized, to be known as he wants to be known.

What might he teach me, if I am willing to learn?

by Kristen - February 19, 2016February 22, 2016

Bond in My Pocket

I have rather a thing for the actor Daniel Craig, specifically as he portrays James Bond, and I’d venture to guess I’m not alone.

What woman can deny the appeal of a man so intriguing, so in control, so incredibly capable of handling whatever bad thing may barrel her way, like a unpinned grenade? Throw in the vulnerability Daniel Craig brings to the world’s coolest spy? You’ve got the ultimate package, right there.

I suppose such impervious women exist, but I’m not one of them, and I’ve not hidden the fact since I first saw the new 007 brandishing his Walther P99 in Casino Royale. (Yes, it’s true: I Googled that.)

My husband Andy doesn’t mind my infatuation, as it tends to surface only in the weeks preceding the release of a new Bond film. I imagine he has his own celebrity crushes as well, but has the sense I lack to keep such thoughts to himself, Lara Croft: Tomb Raider notwithstanding.

I would have preferred, however, for him not to learn, a few years back, the extent of my obsession in quite the way he did.

Having wasted the better part of an hour trolling the internet for photos of the actor, I figured, why not print off a few for future perusal? These choice exemplars I then hid in the pocket of an old down coat I wear when feeding our porch cats or digging around in the garage.

This act of foolishness coincided with the purchase of my first iPhone, and Andy’s admonishments to look after the pricey device. Duly warned, I embarked on my weekly visit to Daniel the next day, stopping first at Whole Foods for a bagel for the road.

Daniel was in a fine mood, and I dug in my purse for my new camera-equipped phone. It wasn’t there. Upending my bag’s contents on the floor proved fruitless, as did a frantic search of my car. Well done, Kristen. This would never have happened to Moneypenny.

Using the phone at Daniel’s group home, I called my daughter, instructing her to drop everything and contact Whole Foods to see if they’d found the phone there. Having done all I could do for the moment, I returned to Illinois, phoneless, photoless, feckless.

Meanwhile, Andy returned from work to find Natalie’s scrawled note on the kitchen counter: “Whole Foods — Mom’s phone??” Dismayed, he launched a preemptive house-wide search, through sofa cushions, kitchen cabinets, drawers, seldom-used purses on the back of my closet door. And the pockets of every coat I own.

Including my old down jacket.

I can’t remember where the phone eventually turned up, a detail eclipsed by my humiliation at the discovery of my secret Bond stash by the grinning, thoroughly amused man to whom I’ve been married for 16 years today.

It wasn’t easy for Andy to make a commitment to marriage after 42 years of bachelorhood. It took years for me to fully understand his fears, his doubt at his ability to successfully assume the responsibilities inherent in legally binding himself to another person, and her two children, as well.

His devotion was never in question, as he demonstrated his love for all three of us in ways both tangible and implied. I didn’t understand his concerns as I should have; I saw only the man I knew him to be: one of insight and integrity, of quiet humility and strength.

His wariness was painful, though, as he faltered toward the covenant I valued, as a woman and the mother of young children. My ego was bruised; I wanted to be a catch he was eager to snag, not an appendage reluctantly assumed at the altar. I wanted to be Helen of Troy.

Marriage after 40, I learned, is challenging. We both had expectations, dreams already lost and mourned. But we’ve made it so far.

And I’ve come to realize that his reluctance proved more meaningful than heedless enthusiasm ever could have done. He was afraid to get married, but did it anyway. He made one of the most difficult decisions of his life, for me.

Not the fairy tale l’d concocted, certainly. Yet those have a way of tarnishing over time. And while the years since our eventual union have offered more challenges than even he dreaded, he remains.

Not Daniel Craig, perhaps. But, Andy, you’re my James Bond in all the ways that matter.

You didn’t bail when a financial planner told us years ago to expect to pay privately for Daniel’s longterm care, that 80 grand a year for the rest of his life was a conservative guess.

You painted Natalie’s bedroom three times in the house you didn’t want to buy in the first place to achieve the perfect shade of yellow, even though no one could tell the difference but me.

You laid across my hospital bed after my unexpected surgery, cradling me while I cried out in pain. You recognized the bond I shared with my father, although you met him just briefly before he died. You held my grief as my mother was lost, inch by inch, to Alzheimer’s; you were the one to wake me gently in the night, to tell me my brother had called, and our mother was gone.

You schlepped to music recitals and theater performances, to therapy sessions and IEPs, from elementary to high school, to schools miles away from home. You’ve dragged boxes and dressers and mattresses into dorm rooms and first apartments; you’ve soothed disappointments and set backs, the first tender ache of a broken heart.

Your arrival home in the evenings brought Daniel running from his bubbles and videos, laughing and joyous, to greet you. You taught him to wipe his face with a napkin, and knotted his tie before eighth grade graduation.

It was you who patiently coaxed him through the door of his school in Wisconsin on that fraught, fretful day eight years ago, so he’d be entering his new home on his own terms.

You taught Natalie to drive when I was too freaked to do so; you sat up in those late hours when I was spent for the day, guiding her through the torments of adolescence; you shouldered the cost of graduate school so she wouldn’t be saddled with debt as she entered adulthood.

You held fast during that ghastly meeting with the psycho attorney, when the stakes were so dreadfully high, and endured my screaming in rage and bitterness and fear all the way home from Milwaukee.

You consoled me after a friend I adored turned on me, crushing my spirit and confidence, rueful that you hadn’t been there to protect me from her scorn.

Strapped to a stretcher in the back of an ambulance after our car crash in Wisconsin, you implored paramedics to look after your wife and stepson, because in his agitation, our son might hurt me.

You’ve submitted to innumerable, spontaneous readings of prose I happen to find fascinating, usually during a crucial movie sequence; you’ve helped clarify my thoughts when I couldn’t understand them myself, much less express them coherently in words.

You’ve never once in 19 years said a negative word about my first husband, and have built a solid, generous relationship with him, and his wife; you attended the baptism of their twins, spending most of the ceremony in the parking lot with an uncooperative Daniel, because you understood that Dan should be there, as part of the family.

You told me that as stepfather, you will always defer to my parental authority, but have borne every thorny problem of parenthood by my side.

You assumed a responsibility you never thought you wanted, and have lived up to it every day. You became a man you didn’t intend to become, and are man enough to admit that you are grateful for having done so. And as my partner, you’ve made me more than I was before.

For years, when I’ve been scared, you’ve told me, “Relax, sweetheart. You’re golden. You’re in God’s pocket.”

I have my doubts about that sometimes. But no matter.

I’ve got you in mine. I’ve got you.

by Kristen - April 30, 2015April 30, 2015

Letting Go of Sisyphus

I wrote this essay 12 years ago, and am struck by how much has changed since that time, and how much is still the same.

The call from my son’s teacher caught me off guard that Tuesday afternoon. Daniel had bitten again, this time another child, his peer buddy from the integrated classroom.

Despite a history of such incidents, the news was a blow, and I chastised myself for breaking down. This was old ground, after all. My son is 11 years old, and I am seasoned at this game, an old hand at the mercurial nature of this disorder. An expert at setbacks, of despairing quietly alone, or ranting wildly to anyone at hand. Of trying new tactics and behavior plans, of adjusting medication, of learning physical restraints to subdue without injury.

I am an veteran now, of autism: hanging on, living through, never, never giving up.

My son had excelled in recent months, with a new interest in words and flashcards, proficiency on the computer, the endearing habit of shadowing me as I moved throughout our home. More than ever before he sought our company, remarkable in relation to the isolated, self-contained world he so often preferred. These modest gains were welcome respite from the struggles with behavior, the anxiety that pervaded my thoughts each day.

Now his progress seemed a cruel sham.

“I was set up,” I thought desperately, as his teacher detailed the circumstances of the latest incident. “He is past that now, he must be past that now.”

The “bitee,” my son’s peer buddy, was just fine, handling this un-buddy-like display with surprising maturity, testimony, perhaps, to sensitivity training: the blending of children like my boy with normally developing children, whose ups and downs do not include raging, aggressive outbursts, like the one later that same Tuesday morning during community training at the mall. That episode required full body restraint, twice, by his teacher, in the middle of the food court.

People stared, of course, and wondered what was wrong with my child, who appears normal, on the surface; who is, in fact, beautiful. I can say that, you know, unashamed: he is beautiful. He has that going for him.

****

We are working on the animal cards tonight. He struggles to decipher the name of the animal printed on one side, waiting for the moment I turn the card, and he sees the picture, for he knows dozens of animals now by sight.

“Deh.” “Rahba.” “Tee-ah”. Deer. Rabbit. Tiger. Speech apraxia makes discerning his words difficult, but I understand him. He is learning. He watches my lips for a hint: earnest, heartrending, trying so hard to gain a skill so burdensome.

“Cah.” “Whey.” Cat. Whale.

Good job, Daniel. High five.

****

I fear, in the bleak moments like Tuesday afternoon, that this disorder will engulf me, the person I could have become washed away by the demands of caring for this boy, of loving him so dearly. I see myself forced to assume a role I’m incapable of performing, certainly not performing well. My hold is weakening on the half-formed dream that someday – soon – I’ll begin my real life, my chance to become the person I’d envisioned fading with each passing day: a person of worth, of accomplishment, of substance.

Reading the loose script drafted for my son and me, I sense that key themes of my life have already been written, that I will not so much forge my own identity as step faltering into one chosen on my behalf. Ready or not, I must adapt: as a warrior, an advocate, a wretched Sisyphus pushing a rock up a hill, laden by numb certainty that it will fall, again, and again, and again. I know now that another teacher’s call will come, another incident demanding attention, or remedy, or stop-gap solution, sapping the energy and time and will to discover the real person I was supposed to be.

Other parents seem to manage better than I do, adjusting to these circumstances more gracefully, understanding, perhaps, that success is most fully measured by our ability to meet with dignity the unwelcome demands which touch all our lives. I am ashamed of my struggle to find meaning from this challenge. God picked me, after all, to mother this special child, so He must think I’m very special. Or so I’ve been told. Sure, I wanted to be special; this just isn’t the kind of special I had in mind.

I’d rather cling to the clouding image of the life I thought I’d lead, grasping an ice sculpture after the party when the guests are gone, as it slowly melts in my hands, little pieces of my life dripping away until its shape is unrecognizable. Oh, yes, I want to hold on. Denial is preferable to facing the dark fear that my legacy will be my failure to give my son a normal life; that even my profound love for him will not make him well; that the best I can do is keep pushing a rock and never give up.

****

“Zee-ah.” “Duh.” Zebra. Duck. Always tap the raccoon card because its tail is distinctive. Unlikely to read by conventional methods, Daniel progresses slowly, one word at a time. We hope to build a sight vocabulary through painstaking repetition. “Aight.” Alligator. I stroke his neck when we come to giraffe and comment, “See how long this is!” As I turn the next card he watches my face and I want so much to cheat and help him. “Wah,” he says. Walrus! There is no joy more stunning than his pride as I cry with delight, “Good boy, Daniel! My smart, beautiful boy!” You will read someday if it takes us ten years. You can learn to read …

****

Oh, and they say that God does for us what we can’t do for ourselves. Kicking and screaming, it seems I am becoming what I wanted to be all along. What a painful path to understanding that while I longed to be “exceptional,” I was unprepared for circumstances that truly are so. How slow I’ve been to recognize that the challenges I’ve been fighting have made me more than I was, forced me to become a woman with more on her mind than what to serve at her next dinner party. The real life I’ve been waiting for is here, with these flashcards, and they are my salvation.

****

It’s a difficult evening, and we are alone together. Undefined discontent, expressed through Daniel’s whining and floor-flopping, has been simmering all afternoon. “Just an hour until bedtime,” I tell myself. “Just an hour more to go.”

The phone rings, and I converse distractedly with a friend. Daniel joins me on the sofa, back arching and crabby, thrusting a packet of flashcards in my lap. They are the more difficult set of animals, words he has not yet mastered. I would have preferred a more familiar exercise to calm him and possibly avert a tantrum. Winding down my conversation I begin holding up cards, the pictures facing away from him, trying to concentrate on my friend’s words. I hear my son’s frustration as he struggles with a word he hasn’t memorized. And giving him now my full attention I see him tapping his neck.

Giraffe. He recognizes the word giraffe.

The rock doesn’t seem so heavy just now.

We went up the hill today.

by Kristen - April 18, 2015April 27, 2015

Cracks in the Sidewalk

One of the appealing features of the neighborhood where my first husband and I bought our home was the sidewalk encircling the whole block. It was a common gathering place for residents, and an ideal circuit for walkers, runners or strollers.

As a young mother I made dozens of laps along the half-mile oval from my front door and back, pushing a stroller, pulling a wagon, or walking hand in hand with my children. The sidewalk served as a natural boundary for the kids, too; Natalie, at least, learned to stay on the right side of the walk, clear of the street beyond.

When she was about six years old, I sat on my front steps as Natalie ran down that sidewalk, eager to reach her best friends, sisters who’d just come from their house across the street. I watched as my happy daughter suddenly tripped on a crack and sprawled face first on the concrete, landing, fortuitously, at the feet of our dentist, the neighbor girls’ father, Lenny.

It looked worse than it was. No broken teeth, no split lip, not even a bitten tongue. Just a scrape and a scare, tears quickly soothed in my genial, even-tempered daughter. An unexpected mishap, soon forgotten, one of countless more to come over the course of her childhood.

For years after my son’s diagnosis I desperately craved a road map, some clue to what was coming next. I don’t know if I feel that way any more. Would I have had the courage to continue, to face all that lay ahead, if I knew how often, how painfully I would fall?

Years ago my daughter and I attended a “psychic” party hosted by Natalie’s stepmother, Mary. With no strong views on clairvoyance going in, I came out a believer: with a glimpse of my palm, Deb discerned facets of my life she couldn’t possibly have known, but did: I was an insomniac, a fledgling writer; I had another child, who did not speak, and had recently lost my father. It was uncanny.

We visited Deb several times in the ensuing years. She was so frequently on target that I trusted her gift, although, perhaps heedlessly, never actually based life decisions on her insights. It was all just in fun.

Two months ago Natalie and a few girlfriends scheduled readings with Deb, and drove from Lincoln Park to Downer’s Grove on a Wednesday evening during a heavy snowstorm. Although she’d just turned 25, I couldn’t help worrying, and sent Natalie a text about eight p.m. to make sure they weren’t stranded in a snowbank.

Undoubtedly it would have been better for both of us had I not done so. Our texting went pretty much like this:

“Andy says driving is awful so let me know when you guys get home, OK? xo”

“I will. Anita is finishing her reading and then Ari still has hers so it’ll be a while before we leave”

“Have you had yours?”

“Yes”

“Well??”

“All positive… She sees a big move for me though in 6 months so start preparing yourself”

“Wtf?!?”

“Hahahahahahaha”

“A geographic move???” …. “Andy says ‘Maybe she’s moving back home’”

“Hahahahahahaha. Yes a geographic move.”

“Noooooooooooo! (wailing emoji face) You can’t leave me! (wailing emoji) Omg my life is over”

“She said you would react that way…”

“Screw that shit!”

“Oh calm down.”

“What about your work?? Your licensing??? Omg”

“Ok, you’re ruining the fun, please stop”

“Where are you going?? I’m coming with you”

“I shouldn’t have said anything to you”

(Forty-five minute break while I attempted to compose myself)

“Well still let me know when you get home please”

“I will, we’re finally heading back now”

(One hour later): “Made it safely home alive”

“Good! Thanks for letting me know. xo”

“xoxoxoxoxoxo”

Yeah, I know.

Overreactive. Needy. Profane, to boot.

In the weeks since that exchange, I’ve struggled to understand my response, my utter panic at the thought of Natalie leaving the Chicago area, the seismic shift in our relationship I’ve allowed myself to imagine such a move would provoke. My husband suggests that the changing relationship with my son makes me more sensitive to any threat to my role in Natalie’s life.

But it’s more than that. Daniel’s disability has influenced our lives and our relationship immeasurably, but my bond with Natalie is unique. My relationship with my daughter is one of the foundations of my life. Losing her would be unbearable.

My mind leaps to such extremes, to all or nothing scenarios. I imagine her taking a job on another coast, building a separate life, starting a family I’ll scarcely know. I’ll be a part-time character in the cast of her world, cramming into rushed visits the intimacies we now routinely share. She’ll become a whole new person as I watch, wistfully, from the sidelines. Just as millions of moms do every day.

I don’t want to be one of those moms.

I want my daughter, near at hand, coming here on her day off to do laundry, stock up on paper towels, and store sweaters in my attic when the weather turns warm. I want to go to Macy’s together and buy her a lipstick, to witness her reaction as she sorts through her Easter basket and finds the “Instant Weirdo Glasses” I’ve tucked inside. I want to be a quick drive away if she gets ill, to be the one she calls when her apartment loses power for the first time. I want to join her and Andy at the dining room table as she completes her first grown-up tax return, to trade scornful commentary while watching The Real Housewives of Beverly Hills. I want to share salads at Panera, face to face, as she describes the young man she’s dating now, her friendships, the challenges and rewards of her new career.

For years I longed to know what lies ahead. But if what’s ahead is the loss of one ounce of what I have with my daughter, I don’t want to know.

Of course I’m not alone in these fears, the gnawing uncertainty of what life has in store. Doubt is normal, trust in a benevolent future hard to maintain in a world so often unkind. I miss the unguarded trust I once held, though, during the happiest days of my life: drifting along that tree-lined sidewalk with my perfect baby daughter, rich with the fullness of my world, the profound good fortune I knew, even then, I’d done nothing to earn. When autism threw a wrench in that trust, I never fully recovered.

The future is ripe with possibility now, especially in relation to my daughter. She is thriving and maturing and finding her own way, the very circumstances for which I’ve been hoping to lay the groundwork for years. Since the day she was born I’ve believed that my most essential role is to help her find her own path, yet I’m afraid to succeed if it means losing a part of her. I want her to stay with me, right here, on my side of the sidewalk.

I remember another moment on that sidewalk, when three-year-old Natalie ran toward me, laughing with joy. Her dress billowed behind her as her bare feet slapped the pavement with quick, confident steps, her smile clear and open and sure as she came to me, and I understood then: You will never forget this moment, Kristen. You’ll always have this moment in time.

I’m glad you aren’t afraid to run, beautiful girl. The cracks in the sidewalk are no match for you.

And they’re no match for my love for you, the bond sealing your heart to mine.

That bond is strong enough to stretch around the world and back.

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.