loss – 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 - September 15, 2015September 15, 2015

Camels in Wisconsin

My close and very wise friend Marla reminds me sometimes that, as parents, we are only ever as happy as our least happy child.

Which is problematic when a) you’re as co-dependent as I am, and b) children are a never-ending source of angst all around.

Oh, they are the wellspring of all that is most beautiful in our lives, as well. I’m acutely aware of how fortunate I am to be a mother; I can’t imagine who I’d be without my children. And therein lies the rub.

My equilibrium — because I’m old enough to know that “happiness” isn’t really the goal after all — is irrevocably tied to that of my children’s, as it is for most of the parents I know.

Aside from the advocacy role I’ve assumed on my son’s behalf, I don’t think I’m an overbearing parent; I’ve allowed them room to mature and explore, in different ways, while remaining close and involved in their lives, even as they’ve grown up and away.

My peace of mind, though, is dependent on their lives being steady, on track, on being good. I’ve never learned that trick we are told to embrace as our children reach adulthood, that letting go thing I’ve heard about. I wonder how many parents really have.

Instead, I ride each wave, every turbulent passage of my kids’ lives, feeling the ebb and flow of their experiences as deeply as my own.

There are times, though, when I wish I could disengage, when I imagine what a relief it would be to do so.

Often since my son’s move early this year I’ve considered our relationship, and my aspirations for him, the goals modified, adjusted or abandoned over time. His diagnosis 21 years ago was the beginning of the end of almost every dream I had, back when his future seemed as boundless as my love for him.

No divine flash of acceptance acclimated me to the very different life in store for him than that which I’d mapped out so cleverly in my mind. Submission occurred over years, covert moments of resignation so subtle I often didn’t even recognize their import, the setting aside of one dream, and yielding to another.

He’s living one of those altered dreams now, in a group home tailored and responsive to his unique needs. His behaviors are accommodated, worked on, proactively addressed. He is experiencing a fuller world than I’d dared hope for just a year ago.

Why, then, is it yet so difficult to view his life now as the fulfillment of at least one dream I’ve held on to, a circumstance realized after years of uncertainty and despair?

A few weeks ago I received a photo of Daniel taken at the Racine County Fair, which he attended with one of his specially trained aides. Teeming with crowds and tempting distractions, it was an outing I wouldn’t have dared navigate on my own.

But there he was, engaged and laughing in the summer sun, sitting atop a camel.

He was clutching a boxy, harness-like contraption designed, apparently, to facilitate balance on the camel’s hump, giggling, it seemed, at the absurdity of his position, but enjoying it just the same.

My quirky, unpredictable son was riding a camel.

Laughing out loud in delight, I quickly composed a reply to Daniel’s case manager, who’d sent us the photo.

“Of all the dreams I’ve had for Daniel through the years, riding a camel was never one of them. Seeing this picture, though, I can’t imagine why not!”

I recognized in that moment how bound I am to my old ideas of how life ought to be for my son, for both my children; what will bring them fulfillment, comfort, or — dare I say it? — happiness. I understood, too, that so many of my dreams for both of them are my ideals, and mine alone, shaped through years of my own experience and regret, my own longings and missed opportunities. The finely crafted hopes and dreams I have for my children may, in reality, bear little likeness to their own ideals at all.

How liberating this moment should have been. How freeing to discern that my children, now adults, can — in fact, must — take the reins themselves, albeit in very different ways, weighing the worth of their experiences by their own standards, their own views on the meaning of “happiness.” I really could let go at last.

Naturally, it didn’t work quite that way for me. Lifetime habits are not so easily cast aside. From my camel epiphany emerged a prickly, peevish reaction that I’ve struggled for weeks to articulate, a sullen acknowledgment of how desperately I would like events to proceed, just once, precisely the way I want them to.

Now that would be liberating.

How horribly self-centered, and how very common: We all want what we want when we want it. But, oh, to have respite from the worry, the chronic concern over their welfare, their progress, their lives, which mean more to me than my own. And I’m capable of convincing myself that this would be possible if they’d just follow those paths familiar and comfortable to me, if their lives, so vulnerable and fragile, so critical to my own, played out within the safety of my own comfort zone.

Screw the road less traveled. I want my children traveling roads I’ve walked for them for years, if only in my dreams, whether they are roads of their choosing or not.

Oh, I know where this tantrum comes from, this petulant demand for a guarantee. I’ve had enough of uncharted terrain, of stumbling along dark roads, praying for a lucid, benevolent end. I want convention, the known, even if it’s known only in my fantasy. How much safer than the fathomless range of possibility, all manner of depravity and disappointment, of suffering and loss the world may casually throw their way.

I want to let my guard down, to sink into the shelter of the way things were supposed to be.

And this is the crux of it, what it’s taken me the nine months since Daniel’s move to accept: that I expected his new life to be different than it’s turned out to be. I thought I’d relax now that he is in competent, professional hands, and in many ways I have. But this transition has new complications, as well, fresh heartbreaks to adjust to, more painful because I didn’t see them coming. His life is better, infinitely better than it was, but not precisely as I’d hoped it would be.

The better part doesn’t include me. And being a better part of his life again is precisely what I’ve been dreaming of for years.

Fortunately, I don’t often act on this selfishness. I am living with the ache of feeling like an outsider when I visit my son, knowing I’ll never be the center of his world again. I concede that, at least for now, his behavior deteriorates when I am with him, that our relationship is a trigger for the issues we are trying to curb. I’m trying my best to accept that his need for me is diminishing, and that is how it should be, even though it feels like a loss I simply can’t bear.

I support with all my heart decisions I once could not have imagined my daughter making on her own, finding her way with confidence and grace. I applaud her independence, knowing each new decision takes her a step further from the protective embrace of my influence. I believe she knows that I’ll be behind her no matter what choices she makes, if she fails or succeeds; that she can always run back to me even as she’s pulling away; that I will be her champion for the rest of my days.

Weeks of agitation later, I understand that I’m here again, in another stage of letting go; it caught me unaware, as it’s done so many times before. These periods have taught me, though, that any new experience surrounding my children can feel threatening, their lives in relation to mine in the balance, as I struggle to find my own place, my equilibrium, again.

My desire to hide, to look away from the bright new paths they may follow almost overwhelms me at times. Who knows the distance those paths may carry them? It is simply too painful to contemplate.

But holding them back would be more painful still.

by Kristen - August 5, 2015August 5, 2015

What I Have

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.

By social media standards, life with my son won’t win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag. Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.

*****

We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence. Old patterns are difficult to break with autism. Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own. The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”

*****

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.

But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again. The procedural support is in place to help shift his behavior in a more positive, independent direction. But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another. No line will be drawn beneath Daniel’s life, or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes. But it’s what I have.

by Kristen - May 8, 2015

Two Rooms

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

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

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

****

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

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

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

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

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

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

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

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

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

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

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

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

****

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

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

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

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

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

I will remember this.

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

by Kristen - 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.