Yet there was joy there, too. “If we had known that the condition might be repeated, we would not have risked it,” Sara said. “Having said that, if I were told, ‘We can just wipe out that experience,’ I wouldn’t. Sam got the full benefit of being Jamie’s younger brother. I had a lot less trepidation taking care of him; I knew how to do it. Sam was easier to love. Jamie’s a fighter; Jamie will stand up for his rights. Sam would just curl into you. The image I always think of is that orb of love that Woody Allen had in one of his movies.” David concurred, “There’s a lovely picture we have somewhere of Sara dancing with him when he was little. He was actually standing. Sara was rocking with him. He might have collapsed at any moment. But Sara and Sam were Fred Astaire and Ginger Rogers. They were magic together. It absolutely blows my mind, the impact that a blind, retarded, nonverbal, nonambulatory person has had on people. He has a way of opening and touching people that we can’t come near. That’s part of our survival story—our marveling at how he has moved so many people.”
When Jamie was almost nine, Sara tried to lift him out of the bathtub and herniated a disc. All three of the children had chicken pox. The boys were in diapers and difficult to change. “I think any stay-at-home mom deserves a medal,” David said. “But Sara deserves sixteen Purple Hearts. We had Sam, rushing off to the hospital with seizures; we had our four-year-old; and then we had Jamie, with his unpredictability. It was more than we could do.” They secured an emergency placement for Jamie in June 1989, in a facility for adults about forty minutes away from their house in northern Connecticut. David and Sara became members of a class-action suit against the State of Connecticut, aimed at replacing large institutions with community care. “Jamie embarrassed the Department of Mental Retardation with the notion that the best they could offer an eight-year-old child was a sixty-bed institution with adults,” David said with pride. An article about the fight ran in the Hartford Courant Sunday magazine, with Jamie on the cover, and in 1991, the Hartford Association for Retarded Citizens (HARC) set up a group home. The Haddens decided Sam should live there as well. They visited daily. With Liza in first grade and both boys out of the house, Sara decided that since her best means of communication with her sons had always been touch, she would go to massage school; she worked as a massage therapist for fifteen years.
Two years after Sam moved into the group home, he was having a routine bath when the staff member in charge of his care went to get some medication for him, which she was not supposed to do. While bathing, he would sit in a chair that fit in the tub, with a safety belt across his hips. Perhaps the belt had been forgotten, or perhaps the Velcro gave way. She was gone less than three minutes, and when she returned, Sam was underwater. David received the call at his office and immediately called Sara, who was driving Liza to boarding school. The three of them converged in the emergency room. “The doctor came in,” David said. “We could tell by the look on his face. Sara and I were off in our own numb shock, and Liza was just furious, knowing that somebody screwed up.” Sara said, “We’d talked about wanting the children to die, and then panicked if it seemed to be happening. It was best for Sam. I miss him terribly, and for me it is a tragic loss—but he had been fighting a hard fight a long time, and I have no doubt that he has gone to a better place.”
The Haddens went to the home that night to see Jamie. The caretaker who had left Sam in the bathtub was there. “She was on the couch, in shock and just sobbing,” Sara said. “I gave her a hug, and I said, ‘Marvika, it could have been any of us.’ She shouldn’t have left him alone in the bathtub, but it’s so hard to be vigilant every minute. We fuck up. All the time. If he had been at home, I can’t say that I wouldn’t have left him in the bathtub to go get a towel. It’s incredibly difficult to hire and retain qualified people to do this very difficult direct-care work, and the pay is terrible. If we start charging people with crimes for making mistakes, how is that going to help? I didn’t want to do anything that would discourage other people from entering this relatively thankless field. What’s more, we had to keep going back to that home because Jamie was there. These guys had all saved our lives—by taking care of our kids day in and day out.”
The caretaker was charged with reckless manslaughter. “We said to the prosecutor, ‘Our wish is that you don’t pursue this,’” David recalled. “‘This woman is going to lose her job. She’ll never get another job like this. This problem has essentially corrected itself.’ We both wanted the compassion and healing to set in as quickly as possible.” Marvika was eventually sentenced to five years, suspended, and one of the terms of her probation was that she never again work in direct care. After the sentencing, David gave her one of the bandannas that Sam used to wear around his neck to help with his drooling. “She let out this anguished wail that echoed in the marble corridors of the courthouse,” David said.
The videotape of Sam’s funeral memorializes an outpouring of extraordinary love—much of it for David, Sara, Liza, and Jamie, as well as for Sam. “I’d imagined Sam would die,” David said. “I thought that there would be a sense of relief. And there was. But there’s also this acute sense of loss, the feeling that if I could turn back that clock and save him, I would give my right arm to do it. I didn’t expect to feel that way.” Four years later, when they finally interred Sam’s ashes, Sara said, “Let me bury here the rage I feel to have been twice robbed: once of the child I wanted, and once of the son I loved.”
When I visited Jamie for the first time, when he was in his early twenties, he seemed, at first glance, inert. I noticed how pretty his room was: framed pictures and posters adorned the walls, a nicely patterned duvet lay on the bed and attractive clothes hung in the closet. I thought that selecting pleasing visuals for a blind person was somewhat eccentric, but Sara said, “It’s a gesture of respect, and it sends a message to the people who work with him that we take care of him and expect them to do so, too.” Jamie, who is tall and large-boned, has to be lifted from and returned to his bed with a pulley. The effort needed to keep him comfortable is tremendous, but although he seems capable of discomfort, he at first struck me as incapable of pleasure. Yet to be in the room with Sara and David and their son is to witness a shimmering humanity. “Sam’s death had a mellowing effect on Jamie,” Sara said to me. “But maybe the change was in us.”
On later visits, I found that Jamie sometimes opens his eyes and seems to stare at you; he cries, smiles, and occasionally breaks into a sort of laugh. I learned to place my hand on his shoulder, since touch is his primary means of communication. Liza took two weeks off work to read him The Chronicles of Narnia, just in case he could understand it. Something about the gesture was incongruous, but I saw that he might be soothed by his sister’s voice and presence, and that it was good for her to acknowledge his essential self. “It’s raw, just being a person without trying to impress or achieve or accomplish anything,” David said. “It’s pure being. In a totally unconscious way, he is what human is. I find thinking about that helpful in building enough energy to counteract the demands of it.”
When the group home staff unionized and went on strike, Sara said, “I strongly support their hopes and wishes, but I feel sad at how easily they can leave. I want them to love Jamie, to find it as hard to walk out on him as I would. It’s a job and they do it pretty well and they are fond of him, but they don’t love him. That makes it difficult for me to trust them, especially with the specter of what happened to Sam.” A few years later, when Jamie had been moved to a home slightly farther away, Sara wrote to me, “Our visits to Middletown are like going out on a whale watch. Often we make the trip to find Jamie snoozing and have to settle for reports of ‘You should have been here an hour ago; he was having a great time!’ Or worse, sometimes we are back on the pitching seas of concern as we watch him experience discomfort and try to sort out its cause. We hope for those wonderful moments, like one we had two weeks ago, when we are there for his ‘surfacing’ and can feel his pleasure in being alive.”
• • •
Alan O. Ross writes in The Exceptional Child in the Family that parents’ expectations “invariably include that the child will be able to surpass, or at least attain, the parents’ level of socio-cultural accomplishment.” He continues, “When the child does not conform to this image, the parents often need help in adapting their behavior to the reality—they must learn to cope with the dissonance between their image of ‘a child’ and the reality of ‘their child.’” The tension often has less to do with the severity of the child’s disabilities than with the parents’ coping skills, the dynamics among healthy members of the family, and the importance the parents place on how people outside the family perceive them. Income, time available to focus on the child, and support outside the family are all significant factors. Perhaps the most insidious stress is the social isolation that can ensue when friends retreat, or when parents withdraw from friends’ pity or incomprehension. The birth of a healthy child usually expands the parents’ social network; the birth of a child who is disabled often constricts that network.
Susan Allport, an authority on maternal attachment, writes that in nondisabled populations “it is not parent providing care to helpless young but parent and young, together, performing carefully synchronized, ruthlessly selected dances of reproduction and survival. The newborn is born knowing its steps, but, like all ballroom dancers, it must have a partner. Parents are primed for parental behavior by their hormones and the act of birth, but in order for their behavior to continue, they must have partners that are responding appropriately.” This idea comes up repeatedly in attachment literature. “There is probably no mammal in which maternal commitment does not emerge piecemeal and chronically sensitive to external cues,” writes the evolutionary biologist Sarah Hrdy. “Nurturing has to be teased out, reinforced, maintained. Nurturing itself needs to be nurtured.” In the Handbook of Attachment, the preeminent medical anthology in the field, Carol George and Judith Solomon propose that maternal attachment is “transactional, rather than linear and unidirectional.” What becomes of the transaction with an MSD child, who can often express only appetite or pain, then signal satisfaction when hunger and discomfort are assuaged?
Yet parental attachment to children with MSD occurs time and again; like all love, it is in some measure an act of projection. One thinks that one loves one’s children because they are beguiling and one’s parents because they have given care, but many children whose parents have neglected them go on loving such parents, and many mothers and fathers of disagreeable children are enchanted by them. Carrie Knoll, a pediatrician, described a couple whose daughter was diagnosed with holoprosencephaly, a condition in which a hollow shell of a brain sustains only the most primitive automatic functions of life. “The parents never wavered from the stance that she was a normal baby,” Knoll wrote. The child died only a few weeks after being born. “When I called the family to offer my condolences,” she continued, “I understood that they mourned her as fully as other parents would have. To them, she was simply their child.”
• • •
Louis Winthrop and his wife, Greta, were delighted the day their daughter Maisie was born. The next evening, after Maisie nursed, she seemed to fall asleep on her mother’s breast. The nurse was prepared to leave her undisturbed, but Greta, uncomfortable after a difficult delivery, said, “Why don’t you take her back.” In the brightly lit hospital corridor, the nurse saw that the baby had turned blue. Maisie had seizures for the next twenty-four hours. It’s not clear whether she was having seizures because of oxygen deprivation or whether she stopped breathing because of a seizure. By the time the seizures stopped, her brain stem was bleeding heavily; the bleeding might have been a symptom of the damage or its source. “There is an endless gray scale,” Louis said to me, “between her being completely fine and her dying. If we’d noticed sooner that the baby wasn’t just asleep—well, it’s impossible to know.”
Louis asked the doctor whether Maisie was going to be okay. “I wouldn’t rush to endow a chair at Harvard for her,” he said. Louis and Greta were outraged. “I couldn’t believe that was how he’d tell me that my daughter was likely to be profoundly retarded,” Louis said. They next saw an audiologist, who said Maisie was going to be partly deaf. “I am not very demonstrative, but a tear came out of my eye as he was talking,” Louis said. “He said, ‘You’re going to have to be tough or you’re not going to get through this, and neither is she. If you can’t be tough for yourself, you’d better be tough for her.’ I pulled myself together and stopped crying, and I thought, ‘Yes, I have to be the strong one.’” Still, he felt bruised by the way other parents avoided him: “You go into Central Park with a special-needs child, and the other parents look straight through you. They would never think to come over and suggest that their child could play with your child. I know how they feel, because until Maisie was born, I was one of those people in the park.”
Louis and Greta have gone on to have another daughter, Jeannine, who is healthy. “We are different with Jeannine because of Maisie,” Louis said. “My fear is that we don’t pay enough attention to Jeannine because Maisie uses up so much energy. But on the other hand, we are more in touch with how miraculous Jeannine is and are more excited about every little thing she does, because we know that healthy development is not an inevitability.” Though the Winthrops have struggled, they have certain advantages. “We can see that there’s someone there,” Louis went on. “Other people meet Maisie briefly and they think we’re crazy, but we get enough sparks. We love her so much more than I ever imagined I could love anything. I am still haunted by that shadow Maisie, the one who didn’t stop breathing. The one we got to know for a day. Just once or twice I’ve thought it might be better for all of us if Maisie died. I can never tell how much that’s sympathy for Maisie’s frustration and pain, and how much it’s something selfish. It happens in my daydreams. In my real dreams, Maisie is often well, and she’s talking to me.”
• • •
The philosopher Sophia Isako Wong, whose brother has Down syndrome, asked, “What makes life as a parent worth living—or, in other words, what rewards do parents expect in return for the sacrifices they make in raising children?” Through most of the twentieth century, the standard perception was that families of disabled children could expect nothing; their emotional reality was summed up in the rehabilitation counselor Simon Olshanky’s famous notion of “chronic sorrow.” Drawing on the emotional vocabulary of Freud’s Mourning and Melancholia, the psychiatric world addressed such births with the vocabulary of death. Parents who reported positive emotions were seen as overcompensating to disguise rage and guilt and overpowering wishes to harm their child. A 1988 review of the field concluded, “Researchers and service providers in the field of developmental disabilities view the family as a whole as embroiled in a series of acute crises interspersed with chronic sorrow. Thus the task of family support is seen as ameliorating the deadly pall of tragedy that hangs over the family.”
The answer to Wong’s question changes not only from family to family, but also over time; like many other identity groups explored in this book, this one has made radical social progress, and the “deadly pall” has lifted somewhat. Studies have shown that people who observe parents of disabled children notice more stress than t
hose parents themselves report. Like disability itself—which may appear inconceivably awful to those who can only imagine what it might be like but is much less daunting to many for whom it is a fact of life—the labor-intensive experience of parenting a severely disabled child can eventually become routine, though as with Down syndrome, autism, and schizophrenia, the issue of placement can loom large.
While some people with severe disabilities may experience acute health crises or frightening seizures, much of their care has a rhythm, and human nature adapts to anything with a rhythm. The care can be done competently. An extreme but stable stress is easier to handle than a less extreme but erratic one. This is one reason why parents of people with Down syndrome have an easier time than parents of schizophrenics or of people with autism; with Down syndrome, you know with whom you are dealing from day to day, and the demands on you change relatively little; with schizophrenia, you never know what weirdness is about to strike; with autism, what meltdown moment.
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