Can You Hear Me Now?

daniel-100-copy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Can I learn to do the same with my son?

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

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

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.