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.

Who’ll Stop the Rain

Rain

In my experience, few endeavors have less effect than telling a worrier not to worry, as the years I’ve lost to fruitless anxiety demonstrate.  Apparently, I needn’t worry that I’m alone, however, as Googling the word produces 391,000,000 hits.  We are a world of worriers.

Yet as my friend, the writer Robert Hughes, points out, “I think everybody can say with Montaigne, ‘My life has been full of terrible misfortunes most of which never happened.’”

Concurring with this assessment, though, seldom prevents me from clouding days with one worry or another, my list of what ifs and potential calamities far-reaching and often irrational.  It’s become such a part of me I hardly consider trying to change.

A recent bout with my most familiar nemesis led me to consider, though: could I at least try to embrace a less fatalistic approach, to consider the wisdom of annoying but accurate platitudes like, “Worry is like walking around with an umbrella waiting for it to rain”?

Such an apt simile, after all.  Rain, and the damage it may cause, is one of my most visceral fears.  It’s unstoppable, beyond human control, potentially ruinous.  The menacing possibilities my imagination can conjure are boundless where rain is concerned.  As a co-worker unwittingly reinforced, “Water always finds a way in!”

My phobia reached its peak in the spring of 2014, following a grueling winter of near-record cold and snowfall, the back of which every Chicagoan longed to see.  Everyone except me, that is.  The promise of spring promised me only the melting of the massive snowbanks directly into the basement of my charming but porous 90-year-old home.  I worried about the watery consequences incessantly, for weeks on end.

Given how infrequently we’ve had more than a few trickles in the 14 years we’ve lived here, even I recognized this obsession as absurd.  I couldn’t stop myself, though.  The leaky episodes we had experienced kept me watchful, wary, filled with dread whenever rain was foretold.

That spring was lost to me, my anxiety gathering like the whopping, snow-melting storm forecasters gleefully predicted for a Thursday in early April.  I’d prepared as best I could: old towels lined trouble spots, rags and buckets were near to hand.  Home from work after the day-long deluge, I braced myself at the top of the basement stairs, Odysseus facing a hostile, enemy-strewn shore.

“Be strong, saith my heart;” I recited bravely, “I am a soldier; I have seen worse sights than this.”

*****

We all have fears, real and imagined, some of which we allow to cripple us. My friend Marla Davishoff, a talented therapist, assures me I’m not alone in this particular fear; many people, women especially, feel anxiety around water and their homes. Perhaps it involves the instinct to protect our nests, our flocks.  I can scarcely recall my temperament before adulthood brought responsibility beyond my own narrow concerns, beyond caring for myself alone.  Have I really been this nervous my whole life, this irrational about problems that, while tiresome, are most certainly not the end of the world?  Whatever damage our house may sustain, we have the resources to fix it, however inconvenient that may be.  Yet when the familiar panic creeps in, I chide myself in vain: “What’s the worst that can happen?”  Plenty, my anxious mind replies.

Such frivolous worry, of course, is also just a tad self-centric, cowardly, even.  How selfish to waste so much energy on foolish fears as society reels with more sobering concerns, while I, in fact, have more serious concerns myself.  Real, life-altering concerns.

For years I thought controlling at least my physical environment would help quell the chaos of autism, the daily upset and fear, the desperate need to help my son without knowing how.  I’ve justified, too, my phobias as necessary stand-ins for the vast intangibles that have shrouded our lives since Daniel’s diagnosis, staving off a flood of legitimate, long-term worry too serious and heartbreaking to absorb.  Worry needs an outlet somewhere; how much easier to shoot rabidly at identifiable targets than the elusive, mercurial enemy that has shaped my son’s life, and my own?

For me, and many parents like me, diagnosis of profound disability in our children skews our image of a rational, predictable world.  Life “working out for the best” becomes a naive, unjustified banality, rhetoric like “What’s the worst that can happen?” scant reassurance when your child’s future, his whole existence, is at stake.

I know powerlessness now, that circumstances exist beyond my control despite pleas and prayers and promises; that love alone is not healer enough; that some losses will never be redeemed.  Autism stole Daniel’s life the day he was born, the fullness of normal experience he should have had lost to fate, or chance, or an arbitrary bestowing I’ll never comprehend.

He appears content these days.  In many ways he is thriving.  But I know all that he is missing.  I can’t abandon the worry over what his heart holds, the unexpressed dreams he may harbor that will never be fulfilled.  He is blessed with health and energy and curiosity, a family that loves him, yet he faces a lifetime of inequitable challenges through no fault of his own.  This truth is as sure as rain.  It will always find a way in.  Yet I keep trying to stem the tide.

I wonder if I’m on the right track about any of this, if these insights are really just a convoluted excuse for behavior that’s merely habitual, perversely comforting even as it cripples me.  Have the years of doubt and concern, of questions and faltering, imperfect solutions, warped me so indelibly that I no longer know how to live without worry?

I guess I needn’t worry over the why.  The possibility of change, my fledgling yearning for it and the hard work it involves, is concern enough for now.

******

As you may have guessed, our basement didn’t flood two years ago.  A few rogue rivulets escaped my towel barriers, easily wiped away.  I wasted that whole spring for nothing, fretting away moment after moment, hour after hour, until a whole season had passed, over an event that never occurred.

A few months ago we had the drain tiles in our basement replaced.  It was an expensive undertaking, postponed for years until my daughter was through graduate school and Daniel’s residential placement was, at least for now, secure.  Just after Christmas we added a backup sump pump system, to protect us even during power failures.  Marla optimistically predicts that these improvements will lay my water worries to rest, once and for all.

I was huddled on our screened porch a few weeks ago while the four cats we care for ate the breakfast I provide them each morning.  Andy’s allergies prevent us from bringing them inside, but our porch has been their home base for six years, and we’ve made it their sanctuary.

Sipping my coffee, I reflected that it will be months, perhaps years, before I descend the basement stairs without trepidation at what might be seeping across the floor, but I’ll be working on it, one step at a time.

This hopeful moment was punctuated by a piece of ceiling plaster falling on my head.

The porch roof seems to have developed a weak spot.

My time in the deep end over this new threat passed more quickly than you might imagine, more in proportion to the relative gravity of the problem.  A roofer was called.  A temporary fix was installed, protecting our porch and our cats, until we can address the issue come spring.

I’ve got this.

Not yet a soldier, but standing fast.

This time, at least.