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, “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.
“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 for coloboma, a hole in one of the structures of the eye; H for heart defects; A for atresia of the choanae (blockage of the passages that connect the nose to the throat); R for retardation of growth and/or development; G for genital and/or urinary abnormalities; and E for 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.”
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 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 Sesame Street and 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, wherein one determines one’s own trajectory, rather than 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.
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.”
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.
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