“Did you hear about that woman in the news?” My sister-in-law, Marianna, asked as we hugged hello at my front door.
“What woman?”
“That woman who left her 23-year-old disabled son in the woods.” She paused, probably to see if that was enough to jog my memory. My frozen expression must have read as incomprehension, so she went on. “She left him lying on a blanket, next to his wheelchair with a Bible on it. Somehow he was found a week later, still alive.”
I continued to stare at her, slack-jawed, while my stomach flipped over on itself.
“Oh, my God!” she exclaimed. “I’m so sorry! I was sure you’d already seen it.”
It was a natural enough assumption. My son, Bond, is also in his early twenties. He is also profoundly disabled, unable to walk, talk, or care for himself. He contracted a brain infection when he was thirteen months old, probably from eating a handful of dirt, like millions of kids do. Some microscopic parasitic eggs hatched and traveled to his brain, destroying myelin until his immune system shut them down. Thankfully – oddly – he’s so disabled he doesn’t know he’s disabled, so he’s happy as long as he’s fed, clean, dry, warm, and knows there are people around him who love him.
The news story tormented me, even after Marianna left. I chased my disquiet through the wheelchair accessible paths of my house. My guts clenched as I fed Bond his breakfast and I chewed my lower lip as I changed his diapers. I’d heard reports over the years of parents’ and caregivers’ mistreatment, neglect and abuse. I don’t recall ever having such an extreme response. Why did I take this incident so personally?
I know that I’ve been neglectful at times. I’ve rolled over in the middle of the night when his fussing woke me, without getting up to check on him, hoping he’d quiet himself. I’ve even left him at home alone in his wheelchair while I ran errands. My crimes haunt me, especially when some kind-hearted observer tries to pin angel wings on me.
Caring for a disabled adult is tedious: innumerable years of changing diapers, spoon-feeding, drooling, flailing arms, incessant head rocking. And it’s lonely. Bond goes to a day program, but I work from home so I’m available to care for him when he can’t attend or when has a doctor appointment. So, ironically, I’m more homebound than he is. I’m embarrassed by how much I enjoy chatting with his bus driver sometimes. I wonder what sort of life the woman from the news story, whose name I later learned was Nyia Parler, had outside her son – friends, family, job. Even a halfway-interested social worker can feel like a confidant.
And there’s grief. Grief for the person he might have grown to be. Grief that, like my son, doesn’t change. That persists because, like my son, it’s always there. Time is supposed to lessen loss with distance. But with Bond there is no distance. It breeds from random, unbidden triggers: his birthday, the sight of a toddler running to his mother with golden curls like Bond had. Or an item in the news. The newspaper article said that Parler, 41, left her son in the Maryland woods on an April day in 2015 and hopped on a bus so she could spend time with her boyfriend. A couple of years ago, my marriage over, I began a new relationship. I was giddy with teenage infatuation seasoned with middle-aged experience. But I was also absolutely sure that this new man, a strong, sturdy accountant with crazy-sexy blue-green eyes, couldn’t possibly commit to sharing my life. No matter who I was as a person, how we clicked as a couple, how much we loved each other, I am constrained by my responsibility to my son. This tumor in my budding romance grew until one day, while driving Bond home from a doctor’s appointment, I burst into tears, blinded with bitterness, barely able to navigate haloed traffic lights and watery streets.
The divorce rate for parents of disabled children is something like eighty percent. And after divorce, if you somehow carve out the time and energy to date, you still need to find someone who will tolerate the reality of your obligations. I’ve become numb to my son’s smells and sights and spills. Leaky diapers, dribbles down his chin, sneezes that send particles flying – I barely register them as I grab a washcloth and disinfectant spray. Not exactly the stuff of a hot Saturday night date.
My new man, Jim, stuck around. He came over the evening after Marianna’s visit and we sat together, the three of us, Bond in his wheelchair at the end of the sofa while I held his hand, Jim on my other side. He made airplane crash sounds so that Bond laughed, and paused the DVD when Bond’s squeals overpowered the TV. I stared straight ahead, oblivious to everything but the keen sense of their presence next to me. Parler’s son had been found, but she hadn’t yet, and my brain spun to Maryland and beyond: wondering if she was lying in her boyfriend’s arms, if he knew what she’d done, if he had wanted her to. I wondered what I would do if Jim ever once complained about my duty to Bond, though I knew he never would.
My mother says I’m lucky to have found such a prince, and I agree. But underscored is the suggestion that I need to be more than an ordinary girlfriend to make up for my extraordinary circumstances. Did Parler feel the same burden of perfection? That she couldn’t possibly be good enough to compensate for her undeniably distasteful obligations? That she needed to choose?
Yes, I fantasize about getting in my car and driving away. Driving as far as my credit card will take me. Destination: immaterial. I stare out my living room window, then take a deep breath and resume real life. Jim whisks me away for occasional weekend jaunts where I get to pretend for a scant 48 hours that I’m like every other middle-aged divorcée, while Bond’s 22-year-old sister holds down the fort.
The Bible she left. I have no compass for that detail; I’m not religious. Was it a talisman for her son? To let whoever found him know that he was Christian? That she was? Maybe she felt she could not measure up to God’s judgment of her. Believe me, she didn’t need Him to feel inadequate.
Long ago, when Bond was still a toddler, my then-husband and I whispered in the night about the prospects for our lives. We knew that Bond would need help with every aspect of his life, and for the rest of his life. As we lay on our backs peering into the void of the dark ceiling, my husband said, “You know, in primitive cultures, they’d leave a child like this out on a rock. They wouldn’t throw a bunch of medical mumbo jumbo at a hopeless cause. Don’t think I’m a monster, but I can’t help wondering if that wouldn’t be kinder.”
I didn’t think he was a monster. I was pretty sure he was speaking hypothetically, from a place of despair. But his comment gave me pause. He can’t be the only one who has tried to weigh the efforts to keep disabled people alive – the years of work, sacrifice, expense – against their quality of life, even their right to life.
The answer I gave my husband back then was that we don’t get to make those decisions, and still retain our humanity.
I can see that young man lying in the woods.
The trees in full leaf, dappling his face, as if to protect him from harsh rays. A red plaid blanket mashing the forest undergrowth into an imperfect mattress, cushiony until weight pokes the twigs and stones through. His arms and legs bent at slightly awkward angles, not quite at ease. I hope that he, like my son, is also blind, that he didn’t see his mother walk away.
I’ve laid Bond down in our yard on the same red plaid blanket. I encircled him with toys to grab if he happened to swing his arm that direction. I tucked a rolled-up towel under his knees to keep him comfortable. When I stepped away for a few minutes, he looked small. Vulnerable. Helpless. With a pang in my chest, I sent his sister to sit with him, even if he didn’t know the difference. Our family dog, a buff-colored terrier mix, licked his face, making him giggle, and then curled up at his side.
I told my daughter the story of Nyia Parler. She welled up instantly. “Why did you tell me that?” she exclaimed. “And why did anyone tell you?”
I was mortified; I hadn’t meant to elicit the same shock from her that I’d had, nor did I want to horrify her, or bewilder her with the unthinkable. The terrifying component of this story isn’t that it’s unthinkable, but that it is thinkable, at least for me.
I scrutinize Parler and her son, and me and my son, through a telescoping kaleidoscope, and I swim in vertigo. I wonder how far I can look into her heart before empathy becomes compassion, and whether I could ever see myself following her footsteps out the door and into the woods.
Then I dig deep to find my own humanity in the ashes of hers. I find myself randomly kissing Bond’s forehead a little more frequently during the day, lingering a little longer when saying that last goodnight of the evening. Putting my index finger into his palm, and waiting for him to grasp it once again.
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