TAKING THE TRAIN

Someone says things will be better for himIn the mountainsSo we board the morning train,Hoping to reach the bright, whitewashed cityIn the blaze of afternoon.I have everything he will need:Magazines with pretty pictures,The Christmas candy he wants all year,His water bottle and specially shaped spoon.Quiet and happy, my son dozes.His half-grown chest rises and fallsIn silent hosannas, his breath bubblesMilky as a newborn calf's.The train bores through rock and scrub oakFor hours until suddenly, off to the right,Glints the fierce splintered eye of the ocean.This is not the way to the mountainsAnd why is everyone speaking Spanish?I knew Spanish onceA uniformed official mimes his needTo punch our tickets, butMy purse contains only two mapsOf coastal Texas.The official stops the train. Something must be done with us.A tall station of polished mahoganyLooms in the green shade of palms.In our coach, three rows of seats have vanished.Where they stood, sand dusts the floor.I must find my suitcase.In it are knives, and a cameraTo record what is happening to us.The row of seats in front of usVanishes.The row of seats behind usIs gone too, all its people gone.The sand whispers higher, to my ankles.I find my suitcase in the next car,Catches sprung, knife blades crumbled to rust,The camera full of sand.Only five seats remain.In our two, another dark-haired womanTucks a blanket about the kneesOf another retarded boy.I recall a Spanish phrase:Donde esta mi hijo?A young woman answers:They put him off the train.The train is moving again, fast.The sand in the coach has climbed to my knees.Outside, a desert stretches to the horizon.Somewhere along the endless dunesMy son crawls alone,Without even his walker.Every morning of our livesWe board this trainAnd ride to the point of our separation.

-Elaine Fowler Palencia Disability describes the older person whose bad ankles make walking long distances a trial, and the returning veteran who has lost limbs. The word is also used for people who would once have been classed as mentally retarded, and for anyone whose sensory apparatus is severely compromised. describes the older person whose bad ankles make walking long distances a trial, and the returning veteran who has lost limbs. The word is also used for people who would once have been classed as mentally retarded, and for anyone whose sensory apparatus is severely compromised. Multiple disability Multiple disability refers to people who are impaired in more than one way or from more than one ailment. refers to people who are impaired in more than one way or from more than one ailment. Severe disability Severe disability indicates a considerable impairment. indicates a considerable impairment. Multiple severe disability Multiple severe disability (MSD) refers to people with an overwhelming number of challenges. Some people with MSD are incapable of controlled movement, locomotion, verbal thought, and self-awareness. Shaped more or less like other people, they may not learn their name or express (MSD) refers to people with an overwhelming number of challenges. Some people with MSD are incapable of controlled movement, locomotion, verbal thought, and self-awareness. Shaped more or less like other people, they may not learn their name or express attachment or demonstrate basic emotions such as fear or happiness. They may not feed themselves. Yet, inexorably, they are human, and often, they are loved. The passion for such children contains no ego motive of anticipated reciprocity; one is choosing against, in the poet Richard Wilbur's phrase, "loving things for reasons." You find beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate, and improve one's children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is. attachment or demonstrate basic emotions such as fear or happiness. They may not feed themselves. Yet, inexorably, they are human, and often, they are loved. The passion for such children contains no ego motive of anticipated reciprocity; one is choosing against, in the poet Richard Wilbur's phrase, "loving things for reasons." You find beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate, and improve one's children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.

Although the vagueness of the criteria for MSD makes it much harder to collate the relevant statistics than it is for single, clearly defined conditions, about twenty thousand people with MSD are born in the United States each year. Many who would not have lived beyond infancy are now surviving much longer because of evolving medicine. People actively debate whether extending the lives of these children should always be given priority regardless of their perceived pain and regardless of the ramifications for those who will be responsible for them. Thirty years ago, parents were advised to relinquish severely disabled children, often to let them die. In the last twenty years or so, they have been told to keep and love them. Most states offer supplemental income for family members who have to give up work to take care of an MSD child, as well as respite, health-care, and in-home services. People with MSD who can absorb some schooling have access to a more inclusive system. These services are not provided out of mere kindness; higher-functioning people are less expensive across their life span. For every dollar spent on vocational rehabilitation for people with disabilities, the Social Security Administration saves seven dollars.

David and Sara Hadden married in their early twenties and prepared for a high-powered life in New York. David worked at Davis Polk, one of the city's finest law firms, and Sara soon became pregnant with their first son, Jamie. Three days after he was born in August 1980, an intern entered her hospital room and said, "Your son just turned blue, and we don't know what's going on." The doctors couldn't find anything wrong and sent the family home with an apnea monitor that would sound an alarm if Jamie's breathing stopped. It never sounded, and David and Sara thought he was fine. When he was about three months old, their pediatrician said Jamie's head size was not following the normal growth curve and suggested a skull X-ray to make sure his sutures-the elastic part of the infant skull-hadn't closed prematurely. The sutures were fine. "We went, 'Whew!'" Sara recalled. "Ignoring the fact that his head wasn't growing." The sutures were fine. "We went, 'Whew!'" Sara recalled. "Ignoring the fact that his head wasn't growing."

A few weeks later, the doctor said they should visit a neurologist, and they duly went to Columbia-Presbyterian, where a neurologist said that Jamie had salt-and-pepper pigmentation of his retina, then explained, "You've got king-sized problems. If you're thinking of having more kids, put it on hold. This child is blind, and probably is going to be severely retarded, and may not live long." Then he took a telephone call and said into the receiver, "I'm seeing a couple now with king-sized problems. On a happier note"-as he said "happier," the couple leaned forward expectantly-"I wanted to talk to you about another case." David and Sara walked out of the office in silence.

The next morning, Sara said to David, "I don't know why I'm saying this, but I feel very strongly that we need to have Jamie baptized." They hadn't gone to church in many years, but they looked in the yellow pages and found one around the corner. "I didn't understand it then," Sara said, "but I think I was acknowledging that Jamie had a soul. I've bristled at someone patting me on the head and saying, 'God has his mysterious ways.' I believe that life is a mystery, but I don't think we were given this situation from a specific deity for a specific reason. Still, we found a comfort in the church." David said, "When Sara asked to baptize Jamie, that was the beginning for us."

All Sara had accepted at that point was that Jamie was blind; she thought that his delays were tied to his lack of vision, and she resisted knowing that his brain wasn't growing. A month after visiting the neurologist, she and David took Jamie for an EEG. The EEG technician was digging into Jamie's skull as she applied the electrodes. "That's when we became advocates," David explained. "That's when we said, 'No, goddammit! You're not going to do that with our child.' That was a first; I had always been a well-behaved person who followed the rules. Jamie has made me a far better lawyer. He has forced me to develop advocacy skills that have sprung from passion as opposed to intellectual arguments. We have consented to being interviewed despite being very private people because it's part of advocacy. And Jamie's been a pioneer in that arena, right from those first hospital visits, and we're very proud of him."

At two, Jamie could push himself up into a sitting position, but at three he lost that ability; he was able to roll over until he was eleven, but can no longer do so. He has never developed speech or fed himself. He could urinate at first, but the relevant neurological processes soon failed, and he had to be permanently catheterized. "When we learned that Jamie was retarded, I was afraid," Sara said. "I had this Helen Keller vision that if I found the right key, if I could just do the signs in his hand long enough, he would learn to talk. All of his teachers were urging me, saying, 'Yes, yes, yes, that's what you need to do, the more the better; maximize his potential!' It was wonderful support in one way, and an amazing guilt trip in another way." Helen Keller vision that if I found the right key, if I could just do the signs in his hand long enough, he would learn to talk. All of his teachers were urging me, saying, 'Yes, yes, yes, that's what you need to do, the more the better; maximize his potential!' It was wonderful support in one way, and an amazing guilt trip in another way."

Jamie's doctors were fairly confident that his condition was anomalous, and when Jamie was four, the Haddens decided to have another child. Their daughter, Liza, was born in perfect health. Four years later, they decided that it would be good for Liza to have a sibling who could someday help her to care for Jamie, so they had Sam. When Sam was six weeks old, Sara was putting him to bed, and suddenly he started twitching, and Sara immediately knew it was a seizure.

"With diagnosis, you have prognosis," Sara explained, "and with prognosis, you have greater peace of mind." But diagnosis remained elusive, even though it was soon clear that the two boys shared a syndrome. The Haddens have run advertisements in hospital journals and in Exceptional Parent Exceptional Parent magazine, seeking other children with a similar condition. They've had workups done on the boys at NYU and Boston Children's and Mass Eye and Ear; they've corresponded with doctors at Johns Hopkins. The constellation of symptoms experienced by Jamie and Sam seems to be unique, so no one has been able to predict how the boys would best be treated, how much they might deteriorate, or how long they might live. magazine, seeking other children with a similar condition. They've had workups done on the boys at NYU and Boston Children's and Mass Eye and Ear; they've corresponded with doctors at Johns Hopkins. The constellation of symptoms experienced by Jamie and Sam seems to be unique, so no one has been able to predict how the boys would best be treated, how much they might deteriorate, or how long they might live.

Sam was even more fragile than Jamie. He kept breaking his legs because he had brittle bones; he ultimately had total-spinal-fusion surgery. Fed through a tube from a much earlier age than Jamie, Sam vomited all the time. At two, he spent six weeks in the hospital for continuous seizures. When he was admitted, his cognitive abilities were greater than Jamie's, but after that six-week period, he lost them. David and Sara both became snowed under. "People kept saying, 'Why don't you get help?'" Sara said. "But the idea of help was as overwhelming as the things we needed help with." When she explained to Liza that Sam was going to be like Jamie, Liza said, "Give him back and get another baby." This was hard to hear because it was just what Sara was thinking herself. "That was about the depression; that wasn't about not loving him," Sara said. "My big goal for the day at that point was running a load of laundry, and I didn't always achieve the goal." A few months after Sam's diagnosis, Sara hit rock bottom. "I sat on the kitchen floor trying to convince myself to take both boys with me to the garage and turn on the car and let all of us go on the carbon monoxide," she said.

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." 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 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. 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." 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, 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." 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."

Sara and David described a dynamic within their marriage in which one of them gets into a dark place, and then the other. They take turns supporting each other. "It's a lot of work to pull each other out, and that's part of the partnership," David said. When I met the Haddens, they had just started Gestalt therapy, and their first exercise was to make a timeline of their lives in crayon. "I was filling it in, and I got to drawing the birth of our three children," Sara said. "And I just didn't want to fill in any more, and I started to cry. There's a lot of grief that-in the crisis of living out the logistics of our lives-there really wasn't any room to feel; there was a lot that we swallowed to make our lives happen." one of them gets into a dark place, and then the other. They take turns supporting each other. "It's a lot of work to pull each other out, and that's part of the partnership," David said. When I met the Haddens, they had just started Gestalt therapy, and their first exercise was to make a timeline of their lives in crayon. "I was filling it in, and I got to drawing the birth of our three children," Sara said. "And I just didn't want to fill in any more, and I started to cry. There's a lot of grief that-in the crisis of living out the logistics of our lives-there really wasn't any room to feel; there was a lot that we swallowed to make our lives happen."

Alan O. Ross writes in The Exceptional Child in the Family 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. 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, Handbook of Attachment, the preeminent medical anthology in the field, Carol George and Judith Solomon propose that maternal attachment is 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? "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." 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, 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 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 those 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. 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 those 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.

Unmanaged or uninformed parental expectations are a poison, and specific diagnosis of the disabilities any individual has are a huge help. Jerome Groopman wrote in the New Yorker, New Yorker, "Language is as vital to the physician's art as the stethoscope or the scalpel. Of all the words the doctor uses, the name he gives the illness has the greatest weight. The name of the illness becomes part of the identity of the sufferer." The sadness of a poor prognosis is vastly easier than the chaos of no prognosis. Once the course is clear, most people can accept it. Since knowledge is power, syndromes associated with dire prospects are borne more nobly than those of which little can be understood. Identity is a function of certitude. "Language is as vital to the physician's art as the stethoscope or the scalpel. Of all the words the doctor uses, the name he gives the illness has the greatest weight. The name of the illness becomes part of the identity of the sufferer." The sadness of a poor prognosis is vastly easier than the chaos of no prognosis. Once the course is clear, most people can accept it. Since knowledge is power, syndromes associated with dire prospects are borne more nobly than those of which little can be understood. Identity is a function of certitude.

Paul and Cris Donovan married in the mid-1990s and moved to the Bay Area so Paul could work in the tech sector. Cris became pregnant with Liam shortly thereafter. Childbirth was uneventful, and Liam weighed in at eight pounds. However, the doctors were concerned when he didn't open his eyes, and when they checked, they saw that his eyeballs were the size of peas. "That was the beginning of our downhill run," Cris recalled. Liam needed immediate surgery to open his blocked intestines. Within a week, he would need another operation to repair his heart. After that, he developed a blood clot that almost killed him. By the time Liam was six weeks old, he'd had six major surgeries and had run up hospital bills over a million dollars, paid for by Paul's good insurance. had run up hospital bills over a million dollars, paid for by Paul's good insurance.

"Except that he would be blind, we didn't know if he was going to get better, or be okay, or what was happening," Paul said. "One of the goals with a kid with special needs is how to help them reach their potential. So it's helpful to know what their potential actually is. We never did. In some regards, that stinks, because it's hard to set out and achieve goals. In some regards, it's great, because we don't ever stop trying." Liam was ultimately diagnosed with CHARGE syndrome, an umbrella diagnosis for many children with MSD. It's an acronym: C C for for coloboma, coloboma, a hole in one of the structures of the eye; a hole in one of the structures of the eye; H H for for heart heart defects; defects; A A for for atresia atresia of the choanae (blockage of the passages that connect the nose to the throat); of the choanae (blockage of the passages that connect the nose to the throat); R R for for retardation retardation of growth and/or development; of growth and/or development; G G for for genital genital and/or urinary abnormalities; and and/or urinary abnormalities; and E E for for ear ear abnormalities and deafness. Although Liam is blind, this is not the result of a coloboma, and his hearing is perfect; nonetheless, he met most of the other criteria for a CHARGE syndrome diagnosis and also has other symptoms that are not included in the diagnostic criteria. Nonetheless, Paul said, "It's convenient to have a simple response to the question of what's wrong." abnormalities and deafness. Although Liam is blind, this is not the result of a coloboma, and his hearing is perfect; nonetheless, he met most of the other criteria for a CHARGE syndrome diagnosis and also has other symptoms that are not included in the diagnostic criteria. Nonetheless, Paul said, "It's convenient to have a simple response to the question of what's wrong."

Liam either refused to eat or threw up. Accumulating liquid in his lungs led to pneumonia. Despite a nasal feeding tube, he wasn't gaining weight in his first year. When he was upset, he would hold his breath and pass out; this behavioral communication is a way to signal pain, and it occurred frequently. Paul and Cris had to give Liam CPR some fifty times. Paul said, "One of my best friends asked, 'When are you going to put him in a facility?' I respected him for asking me the question. It hurt, but it was great. Then you make a decision not to put him in a facility, and it's your decision. There's a natural course of life. When he's eighteen or twenty-two, he should be moving on to some kind of home. Our job is to give him the highest quality of life and to reach his potential, whatever that is."

At the end of his first year, Liam weighed only fourteen pounds; in the first three months after a direct feeding tube was surgically implanted, he gained eight more. He needed a permanent shunt to relieve his hydrocephalus. His brain stem was being compressed by his spinal cord, so surgeons shaved the cord down, allowing the brain stem to shift. He had heart surgery because one of his mitral valves had started to close. His shunt had to be removed. Liam was up to fifteen surgeries by the end of eighteen months. Paul went to work from the hospital, then returned; Cris simply lived there. She began to cry as she recounted it. "I don't remember doing a lot of crying at the time," she said apologetically. "It was a state of constant crisis."

At first, Paul and Cris hoped that Liam might someday walk and speak. By the time he was two, they knew he was going to have permanent problems but expected some improvement; over the year that followed, Paul realized that life with Liam might get harder rather than easier. "I only remember breaking down and crying in horror once, and it was the first night," he said. "Still, I think you shed a thousand singular tears, randomly on Tuesday when you see someone else's six-month-old child jumping." Cris said, "The early-intervention people keep you alive. Then, when they think you're ready, they want you to go into a play group. I wasn't ready to accept that this was my group." The first time the Donovans set goals for Liam, Paul recalled, the document was thirty pages: "By the second year, we were after three things. We want him to walk, talk, and eat."

When I first met Liam, he seemed to be gazing into the distance through beautiful eyes, one of which he promptly removed with a little, fidgety gouge to his eye socket. "The man who made them is an artist," Cris said as she replaced Liam's eyeball. "He studied Paul's eyes and mine and made eyes a child of ours might have. They're there not only for aesthetics, but also to promote healthy development of the socket bones." At seven, Liam was in a wheelchair, and how much he was responding to the stimuli around him was hard to tell. Paul put his mouth near Liam's ear and began singing softly, "It's Liam, wonderful Liam, I love you, Liam, Liam, Liam, Liam." Liam smiled. Whether that was an acknowledgment of the content of the song, a response to the intimacy of the communication, or just a reaction to air brushing against his somewhat deformed ears was impossible to tell, but Paul clearly could make his child smile, to the gratification of both.

No one knows that a given child will require twenty surgeries over four years; the question of what to do is resolved one procedure at a time. It can be hard for parents who haven't been down this route to understand the gradualism of it, and while the cumulative effect of all these interventions may become brutal, to deny any single one can seem murderous. Paul admitted that sometimes he'd wondered about the surgeries, but said that he always sensed that Liam could feel pleasure, and that he and Cris believe that a human being capable of positive experiences warrants medical support. "Liam's smile got me through those nights," Paul said, and showed me pictures of Liam at seventeen months, when he was nearly dying, with a feeding tube snaked through his nose. Liam was indeed smiling; he looked almost blissful.

A few years after Liam was born, Paul and Cris decided to have another child. They had prenatal imaging of the fetus's heart, because a defect would have been the clue that she had the same syndrome as Liam, but they had decided they would keep the child in any case; they just wanted to be prepared. Their first daughter, Clara, was born healthy; so, a few years later, was their youngest, Ella. as Liam, but they had decided they would keep the child in any case; they just wanted to be prepared. Their first daughter, Clara, was born healthy; so, a few years later, was their youngest, Ella.

As Liam grew older and heavier, Paul needed to help out more at home, so he moved to a less challenging job that allowed him to be home by five o'clock every day to do two to three hours of physical therapy with Liam. The Donovans had to learn what they could expect from the system, from their families, from Liam, and from themselves. Paul and Cris made a deliberate decision not to orient their entire life around Liam's challenges. "There are parents who quit their jobs and go into special ed," Paul said. "The old world ends. We have a life, and this is a part of our life. Our marriage philosophy is that we come first. If we don't have a healthy marriage, our kids won't have a healthy life." Cris added, "Maybe some people would look at this as bad parenting, but I haven't researched everything. I don't have all the information. I'm not looking for another diagnosis. It is what it is."

At home, the Donovans often keep Liam under the coffee table. He slides in there, and they have mounted toys that dangle down to just where he can touch them. At a party, a newish acquaintance said, "Hey, your kid's under the coffee table. Is he okay?" In those circumstances, Paul and Cris are happy to explain. They always give information to children who ask. "You say, 'Well, he doesn't see,'" Paul said. "Kids are like, 'What?' I say, 'Okay, what do you see out of your nose?' They say, 'What do you mean?' I say, 'That's it. There's not even a sensation. He doesn't even have an orientation for the visual. So he's lost in space completely.' They go running off saying, 'Mommy, what do you see out of your nose?'" Paul spoke of seven-year-old Liam as having "a beautiful spirit, an adequate mind, and a frustratingly inadequate body." Liam was unable to crawl, but could sit with support and could even pull himself along on a shiny wooden floor. The Donovans therefore have no rugs. Most of Liam's muscles were too weak to be useful, but some tendons were so tight that his hands couldn't be uncurled or his legs extended; nonetheless, he could catch a large, gently thrown ball. He is unable to chew, so his food must be pureed. "I dream of getting as much chocolate pudding as he does," Paul said.

When, during our days together, Liam began to cry, Paul said, "If he's crying like that, it's because he's not the center of attention." Paul thinks that the sound of his name is enough to make Liam feel included; Cris maintains that he can tell just what's going on. "He shows signs of intelligence that you don't see unless you spend a lot of time with him," Cris said. "His teachers and aides like that he gets bratty like that; it shows he's thinking." Liam laughs at jokes; he appears to like certain TV shows and will lie soundless and contented for TV shows and will lie soundless and contented for Sesame Street Sesame Street and and American Idol American Idol. Paul is trying to get him enthusiastic about hockey. "It's a learned trait," Paul said. Though Liam cannot dress himself, he has learned to hold out an arm when his parents are dressing him. "It's more intake than outtake," Paul said. "But he's there."

Liam was in a special day school when I met him. Paul and Cris wanted him in a more academic context. "Without the challenge, we won't know what he's capable of," Cris said. But the Donovans have not fought the system as much as many other parents of disabled children. After fighting for a year to get Liam a wheelchair, they just paid for it themselves. They had found a house they loved and wanted to buy, but the special-needs person in that district was unhelpful, so they chose the house they live in for the good social services in its area. "Liam's not going to run the Boston Marathon on Tuesday," Paul said. "He's not going to go to Harvard Law next Thursday. It doesn't mean we don't fight for his rights and try to get him what he needs, but it has been collaborative, not competitive or negative. By the dependency that one child has, I've learned a lot about the management of independence with the other kids. The girls can do whatever the hell they want and I'll be proud of them. It's very freeing."

Catholicism runs deep in the Donovan family. Paul goes to church every Sunday with the girls; sometimes, he takes Liam. During the worst early years with Liam, Paul and Cris went to mass together every day. "When Liam was in the hospital, that gave me something to grab on to, but it was more the ritual than the faith," he said. Cris said, "It's the structure. It was a calming way to face every day that was going to suck." Paul wrote up a list of the ten things that enabled him to persevere, and the first was "Keep the faith," which he said he meant in the broadest possible sense. "It doesn't have to be religion. But for me, it was. I think there's a plan. The cross fell a few times. We had to pick it up. It's made my faith more relevant; it's made it more authentic." Taking Liam to church is part of a social vision as well. "Every kid in our church is perfect," Paul said. "They need to know that some things don't conform to the norm. Liam's one of them."

Toward the end of the weekend I spent with the Donovans, Cris mentioned that she was feeling good about her New Year's resolutions. I asked what they were. "You are part of it, actually," she said. "I resolved to do things that I'm afraid of. Doing this-talking all about myself and the hardest parts of our life with you-is something I can give back to the world, and I decided just to do it, and I'm glad I did. It helped me to lay it all out like this; it helped me see how hard it all is, and how terribly much I love our son."

Having a disabled child can be both isolating and an introduction into new networks, and the means of coping with that experience have been systematized over the last few decades. Parenting such a child clarifies the dynamics of a marriage as it does friendships; for parents who do not have real intimacy with each other or with friends, the going can be tough. "Social isolation remained a correlate of less positive mood, more depression, less attachment," one study found. Participating in support groups, advocacy, and medical research can help parents reframe their experiences. Making social connections with their child's caregivers is also helpful. For people who must accept a fixed external reality, the only way forward is to adjust internal reality. Many coping strategies have a Zen simplicity. Instead of resolving chaos, find beauty and happiness amid chaos. I am reminded of a friend who said that when she found out her husband couldn't fill her needs, she changed her needs; they've had a long, good life together.

Empathy and compassion work best in concert with the belief that you are still capable of shaping a meaningful life for yourself and your family. The technical term for this is internal locus of control, internal locus of control, wherein one determines one's own trajectory, rather than wherein one determines one's own trajectory, rather than external locus of control, external locus of control, wherein one feels entirely subject to outside circumstances and events. To achieve an internal locus of control, people actively seek to match their lifestyles with their priorities; a mismatch occurs, for example, when a man works a hundred hours a week while most valuing his role as a husband or father. Paradoxically, however, parents of disabled children often achieve a feeling of control by making a firm and positive affirmation of their lack of control. The most important thing, often, is a belief in something bigger than one's own experience. The most common source of coherence is religion, but it has many other mechanisms. You can believe in God, in the human capacity for good, in justice, or simply in love. wherein one feels entirely subject to outside circumstances and events. To achieve an internal locus of control, people actively seek to match their lifestyles with their priorities; a mismatch occurs, for example, when a man works a hundred hours a week while most valuing his role as a husband or father. Paradoxically, however, parents of disabled children often achieve a feeling of control by making a firm and positive affirmation of their lack of control. The most important thing, often, is a belief in something bigger than one's own experience. The most common source of coherence is religion, but it has many other mechanisms. You can believe in God, in the human capacity for good, in justice, or simply in love.

There are many chicken-egg findings here. It's hard to know to what extent positive experiences generate positive perceptions, and to what extent it is the other way around. Aggrandizing the nobility of woe is a coping strategy, but some parents and some disability scholars exalt the catalog of wonders until having a disabled child seems not merely rich in meaning, but almost preferable to other experiences of parenting. The disabled child becomes a glowing family hearth around which all gather in shared song. Such sentimentality can be destructive; it makes parents who are having a rough time feel worse, adding layers of guilt and defeat to their general experience of trouble. It is easier to forgive, however, if one considers the history of intense prejudice against which it reacts.

When Max Singer was born, one of his eyes was fixed to the left, and the other had an enlarged pupil. The first neurologist to whom Susanna and Peter Singer took their son referred them to a leading pediatric neurologist in New York. He examined Max, then turned to Peter and said, "You should take your pretty wife home and make yourself another baby, because you're never going to get anything out of this one. I don't know if he'll ever be able to walk or talk or recognize you or function or even think." The neurologist said that Max had Dandy-Walker syndrome, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Other doctors refined the diagnosis: Max had Joubert syndrome, which is a subtype of Dandy-Walker. More recent testing has demonstrated that he does not actually have Joubert syndrome, so his current doctor has reverted to the broader Dandy-Walker diagnosis, "but at this point," Susanna observed, "it doesn't really make much difference."

Susanna described the day she got the diagnosis as one of the worst of her life. "I'm not sure that we benefited from knowing instantly that there was something wrong," she said. "That slowed down my attachment to him." The Singers next took Max to a neurological ophthalmologist to figure out what was wrong with his eyes. The doctor determined that Max could see. Everything else was open to question. "The first doctor told us he would be a vegetable," Susanna said. "The next one said he could be slightly delayed. We had these diagnoses but no predictions about what they meant and were told that we wouldn't know what was going on until autopsy. It's very hard to live without clear expectations."

Susanna chose not to discuss Max's problems publicly when he was little. "I didn't know what was going to happen, and I didn't want Max to feel like people knew something about him if, in fact, it wasn't going to be that obvious." Susanna is an art agent who has represented many prominent artists, including Sol LeWitt and Robert Mangold. "I didn't take him around to art-world events," she said. "I was keeping him hidden. I regret that secrecy. It was lonely for both of us." When Max was three months old, the Singers hired a Trinidadian nanny named Veronica, who stayed with them for the next twenty years. "She was like a third parent, and maybe more than that," Susanna said. "If he had had to choose between us and her, he would have chosen her. She was with him all the time. She never ran out of patience." True to advice, the Singers tried for another baby, but Susanna kept miscarrying. They decided to adopt; while Susanna and Peter were sitting at their chosen adoption agency, they got a call from Veronica, saying that Max had come home from school with a fever. Susanna left the meeting so she could take him to the doctor. "Max isn't often sick; aside from his disabilities, he's actually very healthy. But the agency told us that, really, Max took too much work, and we couldn't give what was needed to another child. They rejected us. Maybe it would have been difficult for another child to have Max as a brother-but I think both would have benefited a lot." come home from school with a fever. Susanna left the meeting so she could take him to the doctor. "Max isn't often sick; aside from his disabilities, he's actually very healthy. But the agency told us that, really, Max took too much work, and we couldn't give what was needed to another child. They rejected us. Maybe it would have been difficult for another child to have Max as a brother-but I think both would have benefited a lot."

Max can walk if someone has an arm around him and is holding him up. "Unless he decides he doesn't want to," Susanna said, "in which case he will stop and cross his legs, and it is virtually impossible to move him. If he wants to go to a movie or get to a television, he can practically run." Max can use a bathroom, and he has good movement in his left arm and right leg. "He can do a lot more than he does," Susanna explained. "He'll wait you out." Max understands language, but is incapable of producing speech. In many ways, this might seem to be a vast improvement over having neither expressive nor receptive skills, but the mix comes with its own frustrations; to understand and be unable to respond is maddening. Max can nod or shake his head. In hopes that Max might learn to sign, Peter and Susanna went to the American Sign Language Institute for two years; it soon became clear that Max lacked the motor control he would need for Sign. He can sign "more," "finished," "music," and "I'm sorry." He does not like speaking devices, but when he's forced to use a talking machine, something that translates typing or other symbols into sound, he can make fairly complicated sentences. He can read short words; he can write his full name.

"Max gets a real kick out of almost everything," Susanna said. "He's full of curiosity. There's nothing that makes him scared, except very big dogs. He's well-adjusted and feels very loved. Because he goes to a special school, he's never been ostracized or teased. Also, Max doesn't have any physical deformities that make people shy away. That's helped him a lot. I, frankly, was never all that good-looking. But I think he really is. He's extremely affectionate. He doesn't have the muscle control to kiss, but he hugs hard and often. It used to happen all the time that we would sit around with Veronica, and Max would put his arm around her. If we were laughing, he'd look at her, to make sure she was laughing, too. He's very sweet that way."

Max went off to a special summer camp for the first time when he was nine, and Susanna phoned the camp every day to check on him. Finally, one of the other campers took the call and offered some friendly advice: "Mrs. Singer, Max is having the time of his life. My parents always go away when I'm at camp; maybe you should consider doing that." Later, Max attended a camp run by the Hebrew Academy for Special Children. The Singers are secular Jews, but summer camps for special-needs children are often run by religious organizations. "I don't like religion, but I've learned it's not about me," Susanna said. "Every year Max goes to that camp, he comes back more mature, and he learns incredible amounts." for Special Children. The Singers are secular Jews, but summer camps for special-needs children are often run by religious organizations. "I don't like religion, but I've learned it's not about me," Susanna said. "Every year Max goes to that camp, he comes back more mature, and he learns incredible amounts."

Max is comparatively well socialized and psychologically independent. When he got on the bus to go to the Special Olympics for the first time, he pushed Susanna away. "I was proud of that," she said. "From the beginning, I wanted this child to feel like he was the greatest thing in the world. I succeeded in that. Sometimes I wish I hadn't because he can be so arrogant, but I did." She smiled. "It is not a joyful thing, by any means, to have a special-needs child. But Max, himself, has given us a lot of joy. I had to change my ideas when he was born, about what it means to be successful, for him and for me; his happiness is his success for him, and mine for me. I wish that he would work a little harder at school. I wish he were willing to accomplish more, rather than be satisfied with hanging out. But maybe he would have been that kind of kid anyway. His basic disposition is like mine. Maybe that's why I like it. Buoyant and even. Basically happy, and willing to adjust."

Max loves Jim Carrey movies, has a sense of humor, and is a classical-music enthusiast. "My father's a huge opera buff, and I was named Susanna after The Marriage of Figaro, The Marriage of Figaro," Susanna said. "Somebody gave me a CD of Cecilia Bartoli, and I put it on, and Max was entranced." Susanna has taken Max to see Cecilia Bartoli at the Metropolitan Opera and at Carnegie Hall. They went to see her give an interview at Hunter College. He has gone to her record signings. "He's a groupie," Susanna said. "Cecilia Bartoli, who has a dog named Figaro, has, I have to say, been very nice to Max over the years." She's signed albums to him; she's even signed a photograph for him. Susanna herself had an old, mean dog who died when Max was twelve. "Nobody particularly liked him except for me, and Max, who loved him like a brother," she said. "Max was going off to camp, and I said, 'Max, I really want a new dog. Is that okay?' He kept saying, 'No, no, no, no.' Finally I said, 'Max, suppose we name it after Cecilia Bartoli? He said, 'Yes.' We got the dog, but it was a boy, so the name is Bartoli, and we call him Bart."

When I first met the Singers, Max was twenty. "Adolescence is not easy with children like this," Susanna said. "This little angel that I once had, I don't have anymore, at least not so much of the time. He loves girls, especially pretty girls, but he's not necessarily appropriate with them. He has friends in a way, but I wouldn't say that they're really bonded together. I know he knows the difference between people like us and himself; he's dependent on everybody."

Things had taken a sharp turn for the worse earlier that year, and Peter and Susanna couldn't understand why. Max's behavior became so bad that they took him to a neurologist, who put Max on medication that seemed only to make things worse. Eventually, they learned that Veronica had been telling Max that she was leaving after the summer. She hadn't yet mentioned this to Susanna or Peter. Max had no way to explain what was wrong. "That's one of the hardest things about having a child who can think, and react, and love, and have the feelings we have, but not be able to tell us. I can't even imagine not being able to express such incredible fear and sadness. Once we talked it through, he accepted it; by the time he got back from camp, we had a new person and he's very fond of her. He's adjusted better than I thought, and better than we have; I cried and cried."

Veronica's departure was occasioned by her being tired after twenty years, by Max's being so large that he was becoming physically difficult to move, by her wish to return to Trinidad, and by her horror at the thought that Max would someday be moved to a group home. "Every time we talked about it, she cried," Susanna said. "I kept saying, 'You know this is the best thing for him.' She knew knew that. I felt like Max should be out of the house around the time he would have been going to college. I find it sad to see kids in their forties living with aging parents. I'd like to be around while he's transitioning, to help him, so when something happens to Peter and me, he isn't suddenly thrown into chaos." that. I felt like Max should be out of the house around the time he would have been going to college. I find it sad to see kids in their forties living with aging parents. I'd like to be around while he's transitioning, to help him, so when something happens to Peter and me, he isn't suddenly thrown into chaos."

It can be hard to find a place that can deal with someone who is as physically disabled as Max, but where staff are prepared to talk to him even though he can't speak and to cope with the depth of his understanding. His parents eventually found a place that seemed right, but it was still under construction when I met them, and they were waiting. Susanna is matter-of-fact about the group home. "It's not going to feel like a big void when he goes. It doesn't when he's in camp. Peter and I get along better when Max is away. We don't have help on weekends, and if Peter plays golf all day one day, that means I have to be with Max all day. Peter has the same problem if I need to do something. I don't believe that we'll have an empty-nest problem. I think that would have been very different with a normal child, so I get sad about not being sad."

I have heard mothers of healthy children express a fantasy of the child who would be forever tender and vulnerable and dependent, who would not go through the rebellion of adolescence or the detachment of adulthood. Be careful what you wish for. Disabled children are forever the responsibility of their parents; 85 percent of people with mental retardation live with or under the supervision of their parents, an arrangement that remains common until the parent becomes disabled or dies. This can cause the parents terrible anxiety as they age; it can also give them a permanent sense of purpose. Some parents who begin with gusto become overwhelmed by children who require special attention and, in midlife or later, begin to despair. Others who had originally wanted to give up their children for adoption fall gradually in love with them. forever the responsibility of their parents; 85 percent of people with mental retardation live with or under the supervision of their parents, an arrangement that remains common until the parent becomes disabled or dies. This can cause the parents terrible anxiety as they age; it can also give them a permanent sense of purpose. Some parents who begin with gusto become overwhelmed by children who require special attention and, in midlife or later, begin to despair. Others who had originally wanted to give up their children for adoption fall gradually in love with them.

The life expectancy for people with disabilities is increasing; in the 1930s, the average age at death for institutionalized mentally retarded males was about fifteen and for females about twenty-two; by 1980, the figure for males was fifty-eight and for females it was up to sixty, though people without mobility die younger. For the parents-before the routines are learned, the emotional bond is made, and the fantasy of the imagined healthy child has been lamented-the initial stress is often overwhelming. Within a diverse sample of aging parents of developmentally disabled adult children, however, one research group found that nearly two-thirds felt their continuing role as caregivers gave them a sense of purpose, while more than half felt less lonely with their child still at home.

In 1994, Bill Zirinsky and Ruth Schekter, owners of Crazy Wisdom bookstore in Ann Arbor, Michigan, welcomed their first child, a red-haired boy whom they named Sam. He had a healthy birth, but things fell off over the next few months. Sam had no appetite, poor muscle tone, and wasn't reaching normal developmental milestones. He couldn't sit or roll over. At first, his pediatrician thought he might have a virus, but at six months, neurological and endocrine testing showed that Sam had a grave disorder. The pediatrician said he had "a hunch" that Sam would have a short life span; that his illness might be degenerative; that he might have demyelination of his nervous system, which can damage sensation, cognition, and movement; and that he would probably be "vegetable-like." The information was dropped, as Ruth described it, "like a lead balloon."

Bill and Ruth devoted all of their energy to finding out what was wrong. "For six months, we had thought our son was just developing slowly," Bill said. "In one weekend we had to deal with learning he was on a completely different life path." They contacted pediatrician after pediatrician, only to be told that they were mistakenly reaching "well-baby doctors." Finally, Ruth called one of the pediatricians on her list and described her son to the nurse, who said, "Dr. Weinblatt loves loves these kind of cases." They next made their way to the neurologist who would be with them for the long haul, Darryl De Vivo, at Columbia-Presbyterian Hospital. Bill remembered, "When we asked him, 'Is Sam likely to have a normal life? Is it still possible?' Dr. De Vivo said gently, 'It would appear that that won't be the case.' I knew that we were dealing with something that was not going to be remedied." these kind of cases." They next made their way to the neurologist who would be with them for the long haul, Darryl De Vivo, at Columbia-Presbyterian Hospital. Bill remembered, "When we asked him, 'Is Sam likely to have a normal life? Is it still possible?' Dr. De Vivo said gently, 'It would appear that that won't be the case.' I knew that we were dealing with something that was not going to be remedied."

Bill's older sister has cerebral palsy, so he felt he had been trained to take care of a disabled child. Ruth said, "It would have been different if he'd been diagnosed at birth. All the bonding in those first six months was critical. I was so committed to him by then. I remember very clearly, in those weeks right after, wondering whether I would ever feel joy again, and wanting to sacrifice my own life for his, knowing I would gladly give up everything if he would be okay. Those were two really profound and totally new feelings for me."

Sam would never walk, talk, eat, or hear. He received nutrition via a gastric feeding tube (G-tube), was in a wheelchair, and had a seizure disorder. At the age of nearly ten, he weighed only thirty-two pounds. He suffered from constant reflux and pain. His condition was determined to be an undiagnosable, degenerative neurometabolic disorder. "There were relatives who, over the years, might meet or hear about Sam," Bill said. "Their conception of Sam was, quote, 'vegetable,' kind of a 1950s idea. Many more friends and relatives didn't always get him, but understood that there was more than meets the eye to him. Then there's the twenty percent of our friends who really spent time with Sam and got to know him, who would look in his eyes, then play a game or read a book with him. Sam was a mirror for how people understood consciousness." People asked Ruth whether she thought he knew who she was, and she explained that he knew who many people were. Sam loved visual things; he loved being in the water; he loved therapeutic riding. "He puts a smile on his face when he's riding a horse," Bill said. "When he is feeling good, it's really rich." Among the family photos of Sam are the wedding photos of one of his child-care providers. She had asked Sam to be the ring-bearer in her wedding, and there he was, strapped into his wheelchair and holding the rings on a velvet cushion. "He had a horrible weekend," Ruth said. "He had a lot of seizures, and we had to really drug him. But when it came time for him to go down the aisle, he totally pulled himself together and looked radiant. I feel he understood that the ceremony was something special."

Because Sam's disorder was unknown, the risk of a recurrence could not be predicted. After he turned four, Bill and Ruth decided to try for a second child. Juliana seemed healthy at first, but at about four months, the not-eating-well pattern started. In her fifth month, Ruth and Bill brought her to Dr. Weinblatt. When I first met the family, Juliana was almost seven, and her disorder was somewhat milder than Sam's. She was severely hearing-impaired, not deaf. She could walk, though not far and with great difficulty. Instead of having a G-tube surgically inserted through the abdomen into the stomach, she received nourishment through a less invasive nasal-gastric tube, which Ruth had learned to insert whenever Juliana pulled it out. Juliana did not have a seizure disorder and her health seemed less tentative than Sam's. Like Sam, she was tiny: though she was seven when I met her, she looked perhaps two. "She is a faerie sprite," Bill said, "a delightful and funny little girl from another planet. Like Sam, she is very sensitive and has continued to develop emotionally, even while her cognitive development is limited. Their emotional response to many things is age-appropriate: love, jealousy, excitement, attachment, sadness, compassion, desire, hope." and Bill brought her to Dr. Weinblatt. When I first met the family, Juliana was almost seven, and her disorder was somewhat milder than Sam's. She was severely hearing-impaired, not deaf. She could walk, though not far and with great difficulty. Instead of having a G-tube surgically inserted through the abdomen into the stomach, she received nourishment through a less invasive nasal-gastric tube, which Ruth had learned to insert whenever Juliana pulled it out. Juliana did not have a seizure disorder and her health seemed less tentative than Sam's. Like Sam, she was tiny: though she was seven when I met her, she looked perhaps two. "She is a faerie sprite," Bill said, "a delightful and funny little girl from another planet. Like Sam, she is very sensitive and has continued to develop emotionally, even while her cognitive development is limited. Their emotional response to many things is age-appropriate: love, jealousy, excitement, attachment, sadness, compassion, desire, hope."

Ruth had more of a sense that the children weren't going to live for long than Bill did. Though Juliana seemed stable, Sam's illness was clearly progressive, and his life became steadily more difficult. In an average week, he would be good two days; three days he would have some hours when his stomach hurt, or he had mild seizures, or he would need to throw up; and two days he'd be disconsolate and have to be held much of the day. "I really wanted people to understand that our lives weren't utterly miserable," Ruth said. "Sam was beautiful to me and continued to be beautiful to me. I can't fault somebody for giving up a child like Sam or Juliana; it's a very tall order. But I never wanted to." They had all spent summers on Long Island with Bill's parents in a house by the sea, and as Sam's condition deteriorated, they contacted a local pediatrician. The pediatrician mentioned that while it's easy to let a child go by refusing life support in New York, it's extremely difficult to disconnect a child once he has been connected. They were furious at her. "We felt violated by it," Bill said. "She didn't understand that we thought Sam wanted to be here in this world." Bill and Ruth went for a long walk, and Ruth said that she thought Sam would tell them what to do. "By anybody else's standards, he was already living an incredibly impaired life," Ruth said, "but we had spent nine years with him and knew he could have pleasure, feel love, enjoy his environment, get a kick out of going to school. If that was still true, then I felt it was unfair to let him go."

A few years earlier, Bill and Ruth had decided to adopt a child, and Sam's escalating illness coincided with the notification that a daughter had been found for them. One of them had to go to Guatemala when the adoption was finalized. They kept putting it off, but Sam had been in the hospital for thirty-five days and their new daughter was waiting. So Bill and Ruth agreed that Bill would wait at the hospital while Ruth went to Guatemala. "It was really hard to go," Ruth said. "But he waited. He died the day after I returned." in the hospital for thirty-five days and their new daughter was waiting. So Bill and Ruth agreed that Bill would wait at the hospital while Ruth went to Guatemala. "It was really hard to go," Ruth said. "But he waited. He died the day after I returned."

When I visited Bill and Ruth two years after Sam had died, they were on Long Island again. Age two, Leela, their adopted daughter, was already bigger than Juliana, who at seven weighed twenty-two pounds. Pre-adoption, social workers had expressed concern that a normal child would struggle in their household, but that did not appear to be the case. "The way we love Leela is just different," Ruth said. "I'm constantly juggling those two things, and feeling like Juliana is getting short shrift because Leela is such a magnet for people's attention: she's verbal, she's interactive, she's loads of fun. But then, am I paying too much attention to Juliana? There's no easy path." Bill said, "Many people pay a lot of attention to Leela. Juliana watches. She's constantly measuring and evaluating every bit of it. It's painful to us, sometimes, to watch her watching as people pay so much attention to her sister."

Unlike Sam, Juliana was not confined to a wheelchair, and her diminutive size seemed congruous with her cognitive deficits; what would have been odd in a girl who looked like a seven-year-old was less odd in a girl who appeared to be not yet two. Aside from the nasal feeding tube, she didn't look unusual. Bill and Ruth waited until she was out of earshot to say that they had no idea how long she would live. I asked whether she could understand speech. Bill recounted reading aloud his notes on Sam's death when the family visited a neurologist. Juliana suddenly began to cry. "Juliana's response wasn't necessarily receptive language, but it's receptive something," Bill said. "It's receptivity to her parents' feelings or the vibrational field. We're both sensitive to not talking in front of her about things that might upset her, just the way you wouldn't with a kid who is more obviously cognitively normal. Just in case."

Juliana died two years after my day in Long Island, at about the same age as Sam. Her condition had deteriorated, and before she died, she lost the ability to walk, then most of the rest of her motor control, and was eventually unable to sit up. "Yet one senses that Juliana is not entirely discontented about her path," Bill wrote in an e-mail. "She is frustrated at times, and she cries sometimes when she feels sorry for herself. Yet there has descended upon her a certain wisdom and meditative resignation, which is very becoming. Meanwhile, she does suffer physically, and that is painful for her and us." When I praised the quality of care he was giving to her, he wrote, "I think most people I know, if a child had been given to them who was profoundly disabled, would have risen to the occasion. I need to believe that. It's how I construct a good world." have risen to the occasion. I need to believe that. It's how I construct a good world."

After she died, Bill said, "I would have chosen the easier path. But now, knowing what I know, I would want Sam again, and I would want Juliana again. How could I trade the love I experienced with these two human beings? I was closer to Sam than any human being in my life. I spent more time lying on a bed with him, looking in his eyes, than anyone I've ever been with. I've spent a huge amount of time with Juliana, just hanging out with her, just loving her. So that's like asking any parent whether they would trade the love that they know for some abstract 'better' child. I would do it all again." Ruth reached over and took Bill's hand, with a look of deep compassion. "I actually think it's not believing in God that has given us that perspective. People always regale us with these little sayings, like 'God doesn't give you any more than you can handle.' But children like ours are not preordained as a gift. They're a gift because that's what we have chosen."

Siblings of severely disabled children have been studied extensively, but with inconclusive results. One study mentions that persons with disabled siblings "felt that living with a disabled brother or sister helped them be more responsible, be more tolerant," better able to see "the good in others, develop a better sense of humor, and be more flexible." However, these siblings also reported "embarrassment, guilt, isolation, and concern about the future of their disabled sibling." Another study of siblings of disabled children pitted clinical diagnosis of depression against "plain-old feeling bad" and found that while siblings of those with disabilities were in general more unhappy, they did not suffer from more diagnosable psychiatric problems than their peers. Often, the more obvious or severe the handicap, the easier it is for the nondisabled sibling, because the child does not present in a way that causes people to anticipate normal behavior; children who seem normal at first and then turn out not to be require more explaining. The worst disabilities seem to be associated with the best sibling adjustment. "This result seemed closely tied to the entire family's greater clarity about, and comfort with, a visible defect in the child," one study noted. Another observed that a diagnosis made a huge difference to younger siblings, who could use a simple explanation with friends; those with a sibling with no clear diagnosis had to struggle more.

The reason most commonly given for institutionalizing children in the heyday of institutionalization was that keeping a disabled child at home was unfair to healthy siblings, because the disabled child would take too much of the parents' energy and focus and embarrass the nondisabled child. More recent work shows that healthy siblings are often disturbed when parents institutionalize; Allen Shawn's book the nondisabled child. More recent work shows that healthy siblings are often disturbed when parents institutionalize; Allen Shawn's book Twin Twin details the pain he experienced when his sister was sent away. The interests of the nondisabled sibling are now more often held to require keeping the disabled sibling at home. This may be better for the disabled child as well, but it's striking how the conversation continues to prioritize the interest of the nondisabled sibling over that of the disabled one. details the pain he experienced when his sister was sent away. The interests of the nondisabled sibling are now more often held to require keeping the disabled sibling at home. This may be better for the disabled child as well, but it's striking how the conversation continues to prioritize the interest of the nondisabled sibling over that of the disabled one.

John and Eve Morris were a love story from the moment they met at a party at Cornell, where they were both undergraduates. They married young and moved to San Diego. "I didn't want to be with anybody else, even children, because I loved him so much," Eve said. Not until Eve was thirty did she commit to pregnancy. "I also didn't want to give up my freedom," she said. "As it turned out, I liked being a mother much more than I ever liked freedom."

Eve and John chose as their obstetrician a devout Mormon who was appalled by the local hospital's cesarean rate of one in five births. Before Alix's delivery, he told John and Eve that he "didn't think nature screwed up that much." They warmed to his enthusiasm. When Eve went into labor, she was given an external fetal-heart monitor. Doctors who later reviewed her monitor strip said it suggested distress, and that Eve should have had an immediate cesarean, but their doctor seems not to have noticed. By the time Eve delivered, Alix was "essentially dead"; her Apgar scores were zero, and she was an alarming dark purple color. She was whisked away to the neonatal intensive care unit (NICU). "The dream of normal parenthood shattered there before my eyes," John said.

Immediately following the birth, the doctors were careful not to offer conclusions about Alix's condition-perhaps because dire news can interfere with parental bonding, perhaps due to liability concerns, perhaps because they could not predict the extent and severity of her problems. Although they may immediately have recognized cerebral palsy, the diagnosis was not communicated to Eve and John until many months later. Cerebral palsy is any disability caused by damage to the cerebrum before birth, just afterward, or in the first three years of life. It comes in many shapes and sizes, with a broad range of possible motor impairments. As an infant, Alix screamed whenever Eve tried to feed her, choking on the milk because her throat was constantly raw from reflux, but the Morrises did not yet understand the extent of Alix's disability. "It took us a long time to confront the idea that anything had gone wrong in a big way," John said. Eve said, "I'd been a cheerleader; I'd done well at school and gotten into Cornell; I had parents who loved me and were never abusive; I'd had a life of things going right, and somehow it was hard to think that everything wasn't still going right. Those habits kept me in denial for a long, long time. By the time I faced what was wrong with Alix, I loved her more than anything in the world." I'd done well at school and gotten into Cornell; I had parents who loved me and were never abusive; I'd had a life of things going right, and somehow it was hard to think that everything wasn't still going right. Those habits kept me in denial for a long, long time. By the time I faced what was wrong with Alix, I loved her more than anything in the world."

John is a lawyer with some background in liability. He and Eve initiated a lawsuit against the doctor and hospital when Alix was eighteen months old. After two years, they arrived at a settlement, which included a lump-sum payment and a court-supervised annuity. The annuity is closely monitored; John and Eve must file annual expense reports. They immediately bought a customized running stroller and a wheelchair van, then hired a young woman named Erika Lundeen as a part-time caretaker for Alix. "Erika was never exactly a daughter to us, and never just a friend, and never just someone who worked for us," John said. "She was all of the above." When I met Erika, she was newly married. Alix had been her bridesmaid, dressed up and wheeled down the aisle for the occasion. "We will do anything to keep her in our lives," Eve said. "I want her to have kids, and then I'll start taking care of her kids. Keep it going." Erika lives a mile away, in a house that John and Eve own. "You remember It Takes a Village It Takes a Village?" John said. "I'm trying to build a village, so there will always be second and third layers of people who are familiar with Alix." When Alix was two, John and Eve had a son, Dylan, named for his father's favorite singer, and Dylan's genial, healthy, enthusiastic persona has mitigated his parents' pain somewhat. "My advice is to have another kid," Eve said. "So you know what it feels like to have it how it's supposed to be."

Their major undertaking, accomplished with their own savings and some of Alix's lump sum, was to build their own house in the Point Loma area of San Diego. Designed by Eve herself, the house sits on a hill with a view of the ocean. The corridors and turns are wide enough to accommodate a wheelchair. A big swing hangs at one end of the living room; the sensation of motion is among Alix's chief joys. A hot tub on the roof goes mostly unused now because it has become too difficult to lift Alix in and out of it, but when she was younger, she loved it. She has her own fully equipped bathroom, an ergonomic bedroom with a built-in bed she can't fall out of, and a "sensory area" full of fountains, lights, sounds, and vibrations she can trigger if she hits a button (which she does only by chance). The house is beautiful but not showy, capacious and welcoming and utilitarian, with an honest, handmade feel to it. The beams are exposed tree trunks, and the kitchen-cabinet doors are made from willow twigs Eve gathered near her mother's house. The house also represents a resignation to hard facts. "By the time she was six, we acknowledged that this is who and what she is and what her condition is, and it's not going to change," Eve said. "We stopped doing specific physical therapies, trying to teach her new stuff." The house also represents a resignation to hard facts. "By the time she was six, we acknowledged that this is who and what she is and what her condition is, and it's not going to change," Eve said. "We stopped doing specific physical therapies, trying to teach her new stuff."

Early on, Eve joined a mothers group of women with CP children, but she has never been to a therapist. "When we started the lawsuit, I sometimes wished she had died," Eve said. "So I was thinking about seeing a therapist. But when you initiate a lawsuit here, they can requisition your talks with your therapist, and I did not want anybody to know that I had felt those things. I grew up in a WASP neighborhood, and everyone was supposed to be the same and act in set ways. I have a really easy time at home with her. But we never go out to dinner as a family because of how unpredictable she is. When John has friends over, or when there's a birthday party, or when I see my parents, I want her to be her best. I wanted her to be her best for you, even." Eve looked doleful. "I feel so much sadness sometimes. When my friends are talking about their girls' being mean, I catch myself saying, 'I'm glad I don't have a girl.' I do have a girl, but she's almost this other being. No one understands what it's like; even I know what it's like right now, and that's all. When you came to interview us, I thought, 'Well, I'm very happy to talk to you so long as you promise not to ask about the past or the future, because the present is the only thing I've got down.'"

When I met the Morrises, they had recently drafted an estate plan naming Erika as guardian for both kids; at twenty-five, Dylan would assume primary legal responsibility for Alix, though the lawsuit annuity will always provide sufficient income to hire a caregiver. Eve has tremendous apprehension around Dylan's future role. "I don't want him to have to play the role that John plays now," she said. At sixteen, Dylan maintained that he loved his sister and would always be glad to care for her. "I don't think she's ever missed a baseball game," he told me. "I was born into this. It's affected me all my life." Dylan's coach said that he knew Dylan must have a connection to a disabled kid, because he had never seen such maturity in someone who hadn't done some difficult caretaking.

Eve has consistently opposed having a G-tube surgically implanted in Alix. Alix, eighteen when I met her, has managed without one, though she needs to be fed every four hours to prevent reflux. Alix's impairments are unusually severe for cerebral palsy. All of the other CP children of the women in Eve's mothers group can walk, and all have at least rudimentary speech. One is attending college, and another has a job bagging groceries at a local supermarket. "Blessings are frequently mixed," John said. "Those kids recognize how they don't fit, that they don't have boyfriends or girlfriends, that kids laugh at them. Nobody ever teased Alix. She is so profoundly disabled and helpless that even the worst little snotty four-year-old never snickered at her. As for us, we have to think about seizures but not about her smoking pot behind the school. The fundamental role of the parent is the same: to provide for, and love, and give the best opportunity you can to your kids on any given day. I think we do that with Alix the same as we do with Dylan." don't have boyfriends or girlfriends, that kids laugh at them. Nobody ever teased Alix. She is so profoundly disabled and helpless that even the worst little snotty four-year-old never snickered at her. As for us, we have to think about seizures but not about her smoking pot behind the school. The fundamental role of the parent is the same: to provide for, and love, and give the best opportunity you can to your kids on any given day. I think we do that with Alix the same as we do with Dylan."

John and Eve have become habituated to their daughter's needs; what was once self-conscious has become intuitive. Alix is medically more stable than she has ever been; at the same time, her growth has made it impossible for the family to do things they used to enjoy, to take her swimming or to carry her around the house. The work of getting her in and out of bed or on and off the toilet has become especially difficult as John and Eve have grown older. "It's emotionally gotten easier even while it's physically gotten harder," Eve said. The qualities of helplessness that read as innocence in an infant seem incongruous in someone whose body is adult-size: the uncontrolled tongue, the flailing limbs, the stretching and turning body, the bunched-up muscles. Involuntary movements notwithstanding, Alix is always impeccably groomed. "I put nail polish on her and keep her hair long and dress her in pretty clothes so people will have something to say," Eve explained. "They come over and say, 'Look how nice your fingernails are!' instead of having to talk about what's wrong with her." For Eve, the most burdensome thing is the sympathy that so often supersedes connection. "I hate the look of pity, the people who say, 'You're such a good mom.'"

Staying with the Morrises for a week, I was overwhelmed by how much they had to do and how little they let it get in their way. John is a habitual runner, and Alix loves the sensation of the wind in her face, so he pushes her in a lightweight stroller for five miles every day. Eve takes her for wheelchair outings on the wharf. Every year, Eve makes a Halloween costume for Alix that incorporates her wheelchair: one year she was an alien in a foreign spacecraft; another year, an ice cream truck; and most recently, a Krispy Kreme doughnut distribution center. Eve trained as an artist, and the costumes are marvelous. John and Eve have a fairly equitable distribution of parenting. John is more resilient, and Eve is more attuned. "It doesn't hurt him when she cries," Eve said one afternoon. "He can lie down next to her and she can be crying for fifteen minutes, and he's just keeping her company. And I'm trying to fix it." When it can be fixed, Eve explained, her anxiety is useful, but most of the time it can't, and John's serenity serves a more vital function. Eve takes care of Alix's personal hygiene, including bathing her every other day, while John feeds her most of her meals when he's home. Alix cannot chew solid food, and she cannot swallow liquids without a risk of choking. Five times a day, John gives her a high-protein nutritional supplement mixed with rice cereal and sometimes flavored with a dollop of baby food. Every morning, John and Eve rise at five thirty to get Alix ready for school. It takes about forty minutes to wake and dress her. Then she needs to be fed. The school bus arrives at six thirty; it would be easier for them to drive her, but they want her to experience the social atmosphere on the bus. When Alix turned eighteen, her HMO switched her out of the pediatric system, so when I visited, Eve was taking her to a new GP, a new neurologist, and so on. A few days later, a wheelchair outfitter came to visit, and there was a family session to look over Alix's current chair and decide how it needed to be modified to serve her better. It took just over three hours to order the new chair. home. Alix cannot chew solid food, and she cannot swallow liquids without a risk of choking. Five times a day, John gives her a high-protein nutritional supplement mixed with rice cereal and sometimes flavored with a dollop of baby food. Every morning, John and Eve rise at five thirty to get Alix ready for school. It takes about forty minutes to wake and dress her. Then she needs to be fed. The school bus arrives at six thirty; it would be easier for them to drive her, but they want her to experience the social atmosphere on the bus. When Alix turned eighteen, her HMO switched her out of the pediatric system, so when I visited, Eve was taking her to a new GP, a new neurologist, and so on. A few days later, a wheelchair outfitter came to visit, and there was a family session to look over Alix's current chair and decide how it needed to be modified to serve her better. It took just over three hours to order the new chair.

Eve kept a diary through Alix's early years, but she has never gone back to read it. John said, "We remember all the things we hoped she would do one day, all the hours of physical therapy teaching her to turn over voluntarily, to raise up her head." Eve recounted a recent conversation in which the orthopedist told her that in later life, swallowing gets difficult again, and Alix might eventually need a G-tube. Eve said, "I thought we were at the stage that Alix wouldn't really get better, wouldn't get worse. You never get to relax." John agreed. "I've been invited a number of times to be on the board of the local United Cerebral Palsy," he said. "You know how people say, 'I give at the office'? I give at home. But on the other hand, if any parent could ask for just one thing for their child, what would it be? Not that they go to Harvard, but that they be happy. Alix is happy most of the time. So if I'd had only one wish, that's what it would have been, and I'd have gotten it."