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 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.
• • •
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.”
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?” 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.”
Early on, Eve joined a mothers group of women w
ith 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.”
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.
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.”
• • •
The field of profound disabilities does not often have breaking scandals, but the Ashley treatment rocked that world. Ashley X, whose last name has never been revealed, was born in 1997, an apparently healthy baby. When she seemed irritable at about three months, her parents thought it was colic. It turned out to be static encephalopathy, a diagnosis that, like CP, describes a stable brain injury of unknown origin. It has left Ashley with limited functioning: she will never talk, walk, or feed herself, and she cannot turn over. She can sleep, wake, and breathe—and she can smile.
In a bid to defend his own and his family’s privacy, her father has refused to meet face-to-face with anyone from the media; he refers to himself as AD (Ashley’s Dad). He explained to me over the phone that he and his wife had initially resisted giving Ashley a G-tube because they had a visceral negative response to the idea of surgery. “She cannot chew, and she was always struggling with the bottle,” he said. “We would spend six to eight hours a day to get enough nutrition to her.” Finally, they had a tube inserted. Despite compromised brain function, Ashley is not unresponsive. “Ashley enjoys our company and
voices,” her parents said in a written statement. “When we sweet talk to her, she often radiates with a big smile. She enjoys rich music, walks outdoors, a swim on a warm day, the swing, etc.” Ashley’s parents started to call her their “pillow angel” because she was generally lying on a pillow and never gave them trouble; they have proposed the term be used for other people with MSD.
As Ashley grew from infancy to childhood, her care became more challenging. Hourly, her parents change her position and prop her back on her pillow. “We make sure she is well covered and pull her shirt down to cover her tummy; we wipe her drool, etc.,” AD explained to me. “Also there are diaper changes, tube feedings, dressing, bathing, teeth cleaning, stretching, entertainment.” All of this became harder as Ashley grew larger. “You start having difficulty including her in activities,” AD said to me. “You want to be able to carry her, but your body aches. The notion formed gradually that her added size and weight were her worst enemy, and the idea to do something about it was an epiphany.” When Ashley was six, her mother (AM) was talking to her own mother, who reminded her of a neighbor who had had hormone treatments to prevent her becoming extremely tall; this procedure was not uncommon in the 1950s, when girls over five feet ten inches were considered unattractive.
Ashley’s pediatrician suggested that AD and AM visit Dr. Daniel Gunther, an endocrinologist at Seattle Children’s Hospital. At their appointment several weeks later, Gunther acknowledged that Ashley’s growth could be attenuated by administering estrogen, which would close her growth plates. Since Ashley will cry for an hour when she sneezes because she is so upset by slight discomfort, AD thought she would have a hard time with menstruation and the cramping it can cause. He proposed a hysterectomy. He thought breasts would get in her way when she was turned on her pillow or strapped in a wheelchair and asked that his daughter’s breast buds, the small, almond-shaped glands that enlarge into breasts at puberty, be removed. All this would result in a person who was easier to move—which, in turn, he argued, would mean better circulation, digestion, and muscle condition for her, and fewer sores and infections. Giving Ashley a permanent child’s figure would leave her with what her father called “a body that more closely matched her stage of mental development.”
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