relationship – Good Marching

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 - October 14, 2015

Saying Yes

Years ago, while I worked for the church a block from my home, I’d sometimes bring my son along when he had a day off school. His wonderful sitter was unavailable only on the Jewish High Holidays, so fortunately this didn’t happen very often.

My boss, the church pastor Chris Coon, didn’t mind, or never told me if he did. A typical kid Daniel’s age could stay home unsupervised, but Chris understood that wasn’t an option for my 13-year-old with autism. He was fine with Daniel hanging out in the nursery across the hall from my office, examining the trove of books and toys stowed in colorful bins, while I hustled through the most pressing tasks before his patience wore thin.

Walking down the sidewalk to the church one such day, I explained to Daniel that we’d have lunch at Dear Franks as soon as I finished working. He endorsed this idea by gesturing over his shoulder in the direction of the popular hot dog shop a few blocks away.

“Hot dog?” he verified, and I happily concurred. “Yes, hot dog! We’ll get a hot dog soon!”

We’d been settled in for just a few minutes when Daniel crossed the hall from the nursery to confirm the plan.

“Hot dog?” he repeated, planting himself in front of my desk.

“Yes, buddy, we’ll have hot dogs as soon as I’m done.” Reassured, he returned to the nursery.

A few minutes later he was back, ambivalence creasing his brow.

“Burger?” he asked dubiously.

“Well, sure, you can have a burger,” I replied. “Whatever you want.” Satisfied, he returned to the nursery once more.

A minute later he was rounding my desk and hovering over my chair.

“Hot dog?” he asked, his eyes boring into mine for emphasis.

“Yes, a hot dog’s fine,” I responded, repressing a sigh. “You can have whatever you’d like.” I gave him a piece of candy from the jar on my desk. “You can have a hot dog or a burger. Fries, too!” Mollified, he went back to the nursery where he remained for 90 seconds.

“Burger?”

We volleyed this way for 45 minutes, until Chris came out of his adjoining office and stood behind my computer monitor. We must have been driving him crazy.

“I don’t know how you do it,” he observed honestly. “You’re incredibly patient.”

Ruefully, I explained that these exchanges were so commonplace that they seemed entirely normal by now. Sending off one last email, I called it a day, and Daniel and I walked back down the sidewalk toward the hot dog stand.

Halfway there he stopped in his tracks and seized my arm.

“Chicken?”

*****

Ten years later Daniel and I sat at the kitchen table in his group home, eating the fajitas I’d picked up at Chipotle. As usual, he polished off his diet Coke in no time, and pointed to my cup.

“No, Dan, this one’s mine,” I told him. “You drank yours already, remember?”

My repeated assurances that he’d have another drink at eight o’clock, his scheduled soda time, did little to assuage his desire for mine, as I finished my own meal and stuffed the remains in the bag.

“Pop?” he asked every 30 seconds or so.

Every 30 seconds or so I told him no.

Switching tactics, he began pointing to the driveway. For years I’d stash a soda in a cooler in my car, his treat for the ride during my visits. He hasn’t forgotten.

I told him no half a dozen times.

After lunch he sat in his bedroom, temporarily distracted by the sticker book I’d brought for him, naming, impatiently, various animals and objects as I pointed to them.

We examined a few puzzles he enjoys on his iPad. I asked him about a T-shirt he’d selected at the Renaissance Faire. He showed me the new pair of gym shoes he’d picked out at Sports Authority.

Every minute or so he pointed to the hallway and asked me for “car.”

I told him no again and again.

His agitation mounting, we moved to the patio so Daniel could blow bubbles. He pointed again toward the driveway.

“Let’s hang out here, Daniel,” I replied brightly. “Show me your backyard!”

He unscrewed the top of his bubble dispenser and hurled its contents to the grass, clenching his hands in front of his face in rage.

“OK, Dan, no more bubbles today,” his one-on-one aide, Brittany, called from the backdoor. Daniel turned to me and asked plaintively, “Buh buh?”

Knowing I must support her authority, and the consequence he’d brought on himself, I told him no once more.

*****

For eight years my visits have meant reassurance that I’m still in Daniel’s life, but also the modest treats he craves: sticker books, chocolate covered pretzels, the blasted, coveted soda, his obsession for which shows no signs of stopping. His case manager advises modeling a new kind of relationship, transcending the tangible offerings I use to demonstrate my affection, and letting go of routines honed over years to find a fresh connection as mother and son.

Changing Daniel’s expectations of me, though, seems almost impossible sometimes. I simply don’t know how to do it.

We sat in the living room following the outburst in the yard, Daniel resigned, it seemed, to disappointment.

“It’s hard to tell him no all the time,” I remarked dolefully. His aide nodded in understanding. Brittany’s affection for my son is obvious even as she enforces the rules his team has established.

“I can’t imagine how it feels for him,” I went on, “to be denied again and again, when he wants so little from me.” I paused, fighting to control my voice. “Just once I’d like to tell him yes.”

Brittany murmured consolingly.

“I mean, I get it,” I continued, unsure what I was even trying to express. “He must be desperate to exert control, when so much in his life is determined for him.” My voice trailed off uncertainly. “I know he’s happy until he sees me and starts remembering… I know he’s happy most of the time — ”

From her seat in the kitchen, the other staff member on duty that day suddenly chimed in.

“Some people just need structure,” she pointed out matter-of-factly.

I stared at her, fumbling for an appropriate response.

“Well, duh, lady,” came to mind. “Why do you think he’s living here with you instead of at home where he belongs?”

How to explain that my despair in that moment had nothing to do with what my son needs, but everything to do with the emotion those needs prevoke?

“You don’t know my son as I do,” I thought defensively, “and you certainly don’t love him as I have since the day he was born.”

These discouraging visits make me question whether I should be heeding my son’s new team at all, continuing to follow their lead as my heart screams otherwise. At the same time I’m wracked with self-doubt, asking, in my darkest moments, where my love has taken us. My mother’s heart ultimately failed to provide what he needs to live safely and productively, after all, the structure that makes his experiences now possible. Who am I to question the professionals who have succeeded in showing him a broader world, a world in which I am a mere visitor?

*****

There is no black and white with autism, nor in our shifting reactions to its far-reaching effects. It’s not so cut and dried, mired here in ambiguity, the chronic, desperate search for what is best for our children, stumbling our way through the fallout of this hideous, inscrutable disorder.

I’m learning, though. My role is changing, but I’ll always be his mother, whatever growing pains we are experiencing now. Outside Daniel’s group home we manage fairly well, when I join him and his aide at a restaurant, or wave to him, smiling at his joy, as he swims at the sports complex nearby.

I am part of his new life in these venues, rather than a reminder of the life we used to share. That’s where he needs me now.

But I’m aiming for the day we can simply walk down a sidewalk again, eager for a hot dog, or a burger, or a chicken sandwich.

The day when I can say yes once more.

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 - 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.