by Kristen -

Ready, or not

Dan with stuffed animals 3

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 -

Camels in Wisconsin

Kids at Botanic Garden

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 -

Somebody That I Used to Know

Daniel58

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.