In Rigid Rules, No Heart and No Justice

It seems as if some self-righteous, law-and-order legal eagle without a heart in Delaware is actually going to try to slam the prison doors behind Richard and Dawn Kelso for leaving their 10-year-old, severely disabled, respirator-bound, unable-to-walk-or-talk son, Steven, at the DuPont Hospital with a note, saying they are no longer able to take care of him. They left him with diapers, his favorite toys and a terrible story untold. They left him with medication and a folder with his medical records. They didn’t leave him in the snow or on the mountain top as happens in more primitive cultures. They didn’t leave him in a garbage bag or on a subway as happens from time to time. They didn’t abuse him or neglect him. But they did–what child does not fear this most of all?–simply leave him. The Delaware Department of Family Services has taken custody of this boy who needs around the clock nurses in order to keep breathing. The Kelsos are free, awaiting court action.

If the parents of this helpless child had been poor, uneducated, without resources, the child would have been removed from their home long ago. They would never have had the financial wherewithal, insurance and extras, to provide for the boy’s needs. This child lived in a comfortable suburban development named Shallow Springs Court. These are not young and inexperienced people. Richard Kelso at 62 is chief executive of the PQ Corporation, a chemical company in Valley Forge. Dawn Kelso, 45, is finishing a three-year term as a volunteer board member of the Pennsylvania Developmental Disabilities Council. They did not have other children. They did have money enough to buy themselves extra respite and, still, after 12 years of living with this tragedy, they collapsed. And why shouldn’t they? How couldn’t they? How dare the state judge them, how dare anyone judge them? Think of the disappointment these parents experienced. Their only son is so physically crippled that he will never be able to move independently across a room. He is so mentally limited that he will not talk to them, learn his times tables, root for the Orioles, keep a scrapbook, do a history project, have a sleepover, go to a prom, find a profession, bang drums in the rec room, bike around France, watch late-night porno, write a love letter, take on the complicated patina, burnished, quirky, dark and light, balanced shape of a vivid soul, one with varied memory, private regrets and intricate secret fantasies. Steven is so limited that he will remain imprisoned in his body, imprisoned in his mind, without progress, without change, without hope for amelioration or for miracle recovery, ever more.

When we conceive our babies, this is the nightmare at the back of the mind: Please God, not that . When we watch our children crawl, speak, run, we hover, we applaud, we provide, we pay into tuition plans, we ferry to school dances, we attend sports events and all because we want to speed our children on their way, away from us, into their own lives. That’s the point. The Kelsos were given 100 times the burden of ordinary parents and no point, no point at all.

Our children can drive us mad. They will frustrate our attempts at direction. They will turn into just the opposite of what we had wished, sometimes. They will say No more often than Yes. They will frighten us, return home late, be in a car accident, have bad friends, fail, fall, hurt themselves and, in so doing, hurt us. They will smoke or worse. They will scorn us or worse. They will sometimes make us grind our teeth and sometimes wish we could leave them with a note at the local mall or send them into outer space for a hundred years. They will use our financial resources and take us for granted, absorb the very life out of us, growing as we contract. But they will involve us in the world around, with a growing mind and spirit they will entangle us, extend us, force us to new edges. We all feel some ambivalence toward our children. They do devour us in many ways. And yet they enrich us, test our emotional strength, bring us joy beyond words: Pride fills us. We know more, literally and imaginatively, because of our children’s lives. Our inner landscape is as filled with traces of them as the forest floor is thick with pine needles.

The Kelsos had to provide nursing care at all times. When the nurses didn’t show up over the last holiday they had to take turns staying awake with the child. Something happened, something we don’t yet know occurred. These parents broke, they simply couldn’t anymore. One wonders why they didn’t make institutional arrangements that didn’t require such a drastic act as abandonment. But so many places will not take a child on a respirator that maybe they tried but failed. One wonders why their own support systems–friends, family, church–were not more helpful. But the one true thing is that none of us know exactly what we would have done in the same moment, under the same pressure: grief and guilt, anger at the endless giving the task requires. I would rage at being failed by the support services. I would be overwhelmed by sadness for the child. Mentally worn out, physically exhausted, seeing my own days consumed to no end, a bad bargain, a hopeless situation, what would I have done?

Leaving Steven at the hospital doesn’t seem like a crime to me. Could I have taken care of him as long as they did? I wonder if the mistake wasn’t in trying. I wonder if the caring for this child was possible for any two people over a lifetime.

This is not to say that every less than perfect child should be left at the hospital’s door. That’s absurd, and we shouldn’t be thinking in categories, in absolutes. This particular child, these particular parents, this particular medical condition was simply too hard, too terrible for the Kelsos, and the result should not be an arrest, a trial, a judge wagging his finger, a prosecutor thundering to a jury–but a simple human sigh, a sympathetic, empathetic ache echoing across the community.

It is our one-dimensional puritan streak, our dangerous need for rules without exceptions that has created this travesty of justice. This rigidity, this lack of common sense, this dried-up well of compassion leads to a society that will suit only the lucky or the half-dead. This story raises the question–how much of our lives are we legally required to give up for our children? Who has the right to ask? More and more, I become frightened of the long arm of the law. In protecting me against parents like the Kelsos, isn’t blind Justice just blindly striking out?

In Rigid Rules, No Heart and No Justice