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?
