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Temma Lowly and the Meaning of Life

Her parents didn't know what hit them. Then they started to figure things out.



"When Temma was born my whole faith world was turned upside down," says Sherrie Lowly. A lifelong Christian, like her husband, artist Tim Lowly, she wasn't planning to have a child when she became pregnant in 1985, though she and Tim were willing to be parents. They became concerned when she didn't gain any weight in the last month of her pregnancy and worried when her labor turned difficult. They'd wanted a home birth, but after 24 hours the fetus's heart rate started to drop, and they went to the hospital, where Temma was born on September 27.

Temma weighed only about five pounds. Yet nothing seemed seriously wrong, and an Apgar test showed her basic functions were normal. A doctor recommended keeping her in the hospital for a day, but Tim and Sherrie took her home, knowing that a nurse friend who lived across the street would help if something happened. Temma slept a lot. Sherrie couldn't nurse her at first, so two days later the Lowlys were preparing formula while the nurse held Temma. Suddenly Temma's heart stopped beating and she stopped breathing.

The nurse performed CPR until an ambulance came, but it was about 15 minutes before Temma's heart was restarted. She was put on a respirator and, because she was having seizures, given phenobarbital to send her into a coma. The doctors hoped that when she came out of it the seizures would stop, but they didn't. An MRI determined that Temma had significant brain damage. Tim remembers the doctor saying, "We can't tell you if she's only going to be learning impaired, or if she's going to be in a vegetative state." Later tests showed that virtually no part of Temma's brain functioned normally, and the Lowlys were told that infants with her degree of brain damage usually died within their first few years.

Temma, who's now 17, is cortically blind, meaning that her eyes function normally but her brain can't interpret the signals. She weighs 80 pounds, wears diapers, and has to be given suppositories for chronic constipation. She has to be fed through a surgically implanted tube. She has two types of spinal curvature, kyphosis and scoliosis; both her elbows are permanently dislocated; and her feet are curled. She frequently gets congested and must be laid facedown, her mouth above a bowl, to drain the phlegm. She can't stand or sit on her own; when she goes outdoors she has to be put in a stroller that has a chest strap and neck brace to hold her up. She frequently has seizures, during which her muscles tense and she loses what little bodily control she has. She makes grunting or whining sounds to indicate distress, but doesn't speak. She rarely smiles, and then only faintly. She does respond subtly to being touched, but her parents and other caregivers aren't sure she knows them from anyone else. Tim says it's troubling not to know how Temma feels. "Every time someone says, 'What does Temma like?' we can suggest things that we think she enjoys, but we don't really know."

The Lowlys felt guilty about the choices they'd made. Perhaps they should have left Temma in the hospital that extra day, though Tim points out that if she'd stayed she might have stopped breathing there too. Sherrie remembers that one of their many doctors looked at Temma, then looked at her in a way that gave her the sense that he thought she'd done something to cause her daughter's condition. She'd been raised in what was then called the Dutch Reformed Church and had grown up believing in a "punishing God," and she couldn't avoid feeling that Temma's problems were somehow her fault. It took years of therapy to overcome that feeling, though the members of the church she and Tim belonged to at the time did all the right things: when Temma was hospitalized on a Sunday they interrupted the service to offer a special prayer, and the pastor told Sherrie that simply loving Temma would "heal a lot of wounds."

"In hindsight," Tim says, "we would have given her formula right away. Many women don't produce milk immediately. With Temma's low birth weight, I've always had the feeling that she lost interest in living because it was turning out to be too much work. But ever since having her heart stop she's been incredibly persistent and fights harder to live than most people would." He describes the trauma two days after Temma's birth as "probably the most difficult thing I've ever experienced in my life."

There were trips back to the ER, with Temma wheezing and her parents wondering if she was about to die. A year later Sherrie had "horrible back pain," probably because of all the stress. Tim says they gradually had to accept the disintegration of every parent's normal expectations, that "at age X your child will smile at you, at age Y it will crawl across the floor, that it will go to nursery school, read a book, play baseball, go to college. It became clear as time went on that Temma was not going to fulfill any of those typical dreams or desires. Even today there are people who talk to us about praying that Temma will see again. I don't want to discourage people from that kind of hope, but the truth is there's a kind of daily dying in realizing that that's not going to happen. So in a sense Temma has faced us with a kind of death from very early in her life. Plus there has always been the very, very real possibility that she would die." He adds, "It's hard for me to imagine that Temma wants to die, but if she had a normal thinking process it wouldn't be outside the scope of possibility. Granted, we don't really understand what it means to her. Maybe there's such pleasure in living that the things she has to contend with are worth enduring. But her life seems very hard to me."

The Lowlys resisted getting the feeding tube, even though Temma kept aspirating her food. Sherrie says that when surgery was first suggested, when Temma was a year and a half old, "I was almost yelling at this doctor on the phone, because feeding Temma orally felt to me like the one thing I could still do for her." They went to an alternative practitioner, hoping to find some options. He disparaged Temma's diet and seizure medication and suggested feeding her raw eggs and raw spinach. "So in our great intelligence we fed her," says Tim. "And what does she do? She aspirates." Then one of Temma's regular doctors told them that in time they might be able to feed Temma orally, and they agreed to the surgery.

Children as severely disabled as Temma are unusual, and many parents choose to institutionalize them. Temma now goes to special education classes at Lane Tech, but she lives with Sherrie and Tim. They also hire a part-time caregiver to help them with her at home, which has been a continual struggle--she's had 30 or 40 in 17 years. Few people enjoy caring for a child who offers so little in return, particularly since the pay is low. Lately the Lowlys have been paying their caretaker themselves, which lets them offer a higher rate than the state's hourly subsidy.

The Lowlys say they aren't seeking sympathy. "There are parents who go through much more difficult situations," says Tim, "who have children who are alcoholic and homeless, who have to bail their son out of jail or get him off the street." For Tim, putting her into his paintings (seven are on view at the Gescheidle gallery, 300 W. Superior, through December 10) became a way of expressing his faith. And Sherrie says, "My whole way of knowing and seeing God changed, via a day-to-day process of working through my own guilt to seeing that God loves me and beginning to see God in Temma."

Tim Lowly was born Tim Grubbs in 1958 in Hendersonville, North Carolina, to parents who soon afterward became Presbyterian missionaries. When he was three the family moved to South Korea, where they lived in a compound with other missionary families. From 7th to 12th grade he attended a boarding school for missionary children about 50 miles from the compound. "Growing up in what was at that time a developing third-world culture that was still rebounding from the Korean war had a profound effect on me," he says. "I had a constant awareness of our relative wealth in comparison to people of that culture, and whenever we came back to the United States, for a year every four to five years, I sensed the difference more acutely."

Tim's mother taught piano and organ at a women's Bible college; she taught him piano, and he picked up the guitar on his own when he was 19 (he still composes for and performs in church folk-rock groups). His father was the head administrator of a Presbyterian hospital and started a hospital choir. "Mission work is something you do to help other people," Tim says, pointing out that not all missionaries evangelize. "It's mandated that you feed the hungry, clothe the naked, and heal the sick, so it makes sense that mission work cover all those bases and not just try to convert. The fundamental truth I learned from my father and my mother is that true religion is reflected in what you do with your life, not in some words you spout. To this day I feel unproductive because the model set before me was a man who worked his tail off.

"Everyone I knew was from a family who was in Korea because they were Christians. That was the world I grew up in, and since they were good people, there was no reason I would choose another religious path. The year I probably became most involved was my sophomore year in high school. I was doing a lot of Bible verse memorization. At that age you're really looking hard--you want to be in the right. For a lot of children that means being in the right group or wearing the right clothes. For me it meant believing in the right things. The fundamental tenet of evangelical Christianity is that the Bible is true, so the quest is figuring out what the Bible really means. The teachings of Jesus were and still are the most important--I've always been a little suspicious of Paul. I don't think you read the words of Jesus and just say, 'Oh, that's nice.' You either reject them or take them to heart."

He remembers being struck by reproductions of artworks he saw in elementary school, including an early Picasso, The Old Guitarist. "It impressed me as a very, very soulful painting," he says. "I don't in general care for Picasso's work, but that period of his art was less about style and more about people." Perhaps even more important were the vivid impressions he had of Korea. "A group of missionaries and their children would go geese hunting when I was a boy. There was a wide-open space near the ocean, and I remember the sight of thousands of geese taking off at the first gunshot. The memory has less to do with the hunt than with the sensation of the space." Lowly started making his own art in elementary school--"drawings of drag racers' cars that had been souped up in strange ways." By high school he was doing portraits of friends and allegorical images that reflected his faith.

Like most missionaries' kids, Tim came back to the States for college, entering Calvin College in Grand Rapids, Michigan, in 1976. He majored in art in a department whose dominant aesthetic was abstract expressionism. He remembers a philosophy professor assigning Catholic writers Gerard Manley Hopkins and Thomas Merton. "In Hopkins there's that particular sense of wonder at God's presence as revealed in nature," Tim says. "In Merton there's a similar interest in contemplation in relation to nature."

After his freshman year Tim decided to live in an intentional faith community in Grand Rapids instead of a dorm. "The model for the community," he says, "was the early church--people sharing resources together." He says the members were concerned with working for social justice, ministering to the poor, and living a "simpler lifestyle, using money more efficiently." Income went into one account, from which each member was supposed to be paid an equal stipend. The members occupied several buildings; married couples had their own bedrooms, and single people generally shared rooms. They ate their meals together and shared their vehicles; at one point they had four cars for 16 people.

There were problems. The equal-stipend rule wasn't always observed, which created tension. And though Tim doesn't think the community was a cult, he says not everyone was mature enough to participate properly. "When Jesus said, 'Love your neighbor as yourself,' what's implied in that is you have to love yourself. But many community members didn't even know themselves. Their own sense of self hadn't been firmly established," and that left them open to "psychological manipulation" by the group's leader.

A couple of months after Tim moved into the community, Sherrie came to visit the group. He remembers looking across the table at her and wondering if she was the woman he would marry.

Sherrie was born Sherrie Rubingh in Grand Rapids in 1955. Her father was a state highway department worker, and the family struggled to send the children to private school. She describes the Calvinist community she was raised in as "inbred, tight-knit, conservative--keeping the rest of the world out." But during high school she visited the intentional community where she would later meet Tim. "My reaction was that someday I wanted to be part of a community like that," she says. "The kind of spirituality they were living out, the songs they were singing, was very charismatic, very life-giving. Here were people happy about their faith." After earning a degree in social work at Central Michigan University in 1978, which opened her eyes to the possibility that "there are other ways of worshiping and seeing God," she returned to Grand Rapids and joined the community.

Sherrie worked in a home for runaway teens. Tim painted apartments part-time. They weren't romantically involved during their first few years in the community, but they married in 1981, the year he graduated. Neither of them liked the tradition of women giving up their names when they marry, and they considered hyphenating theirs. But, Tim says, "we wanted to express the idea of our becoming something new as a family, so we decided to choose a common English word that reflected both the meanings of our respective family names and some sense of our beliefs. Grubbs is related to earthworms. Rubingh includes the Dutch word rube, meaning 'peasant.' The name Lowly seems to get at those and reflect what we felt personally. In Scripture the word 'lowly' is often used in reference to a position of humility. It's not intended as a word to describe who we are, but as an aspiration, a goal."

After college Tim started trying to make art that was "somehow childlike," taking Georges Roualt and Marc Chagall as models, but also inspired by Jesus's statement that "unless you...become like children, you shall not enter the kingdom of heaven." "I still believe there is something unique about a child's perception of the world that is worth aspiring towards," he says. "Many children have this openness and receptivity rather than skepticism and distrust, and there can be something joyful and graceful about the way a child makes art."

In 1983 the Lowlys went to Korea, where Tim's parents still lived, and stayed for a year. Remembering a book he'd read in high school about a missionary who worked with Korean laborers, he wondered if there was an indigenous Korean art movement that depicted the poor. There was, and he was particularly drawn to the work of Lim Ok-sang. They met and hit it off. "He looked at my slides and said, 'I don't like Americans, and I don't like American art. But I like you, and I like your work.'" Lim's depictions of rural life became one of Tim's many influences.

Tim spent that year working on his art, then was given a one-person show at an art center in Chunju. His father--whom he calls "a very rational kind of person, as opposed to my mom, who's more subjective"--had long been urging him to study accounting. Tim describes how his father came to the opening and overheard two Korean artists talking about the work, then came over with "a look of dismay on his face and said, 'These guys are talking about your work, and it sounds like they think it's really good.' That was the first time he actually seemed to encourage me to pursue art as a vocation, and that made a huge difference to me. Part of the reason for his dismay was that my work then was more stylistically challenging. For someone who didn't know very much about art, it could appear to be not well made."

Tim acknowledges that he has a rebellious streak and may have chosen that style as a way to oppose his father's rationalism. "At that point, where I felt like my dad was able to affirm what I was doing, my work started to become much more realistic," he says. "Today my art is the strongest when there's a balance between the rational and the subjective."

Tim's work also changed because of what he saw during the six-week trip he and Sherrie took across Europe on their way back from Korea. He was impressed by the paintings of Giotto, Bellini, and Grunewald and by the way the "reverence for the everyday" he'd found in the writings of Hopkins and Merton was realized in the work of Jan van Eyck, Rogier van der Weyden, and Johannes Vermeer. He soon switched to the traditional medium of egg tempera, which can require the painstaking application of up to 20 translucent layers of paint. "Acrylic was too plastic looking," he says. "The solvents in oil paints gave me headaches. The Fra Angelico altarpieces at San Marco in Florence have a type of radiance that I've always been very drawn to, and I had never had paintings look this luminous before. The contemplative aspect of sitting and making thousands of marks really appealed to me. I was also interested in doing work that has both a spiritual and a political quality, in making paintings that were beautiful even in a sentimental sense, so that people would engage in something that they might otherwise find difficult." Eventually he would discover a way to use gesso tinted with acrylic to achieve much the same effect as tempera.

Tim was also attracted to the concept late Gothic artists had of themselves as craftsmen rather than conveyors of their own angst. "In abstract expressionism there's a value in the virtuosity of the artist's mark," he says. "For van Eyck and van der Weyden art was a worthy labor, as opposed to the view of the artist as a refined genius. Van Eyck's motto was 'As best I can,' and I saw that same kind of work ethic in his art that I observed in my father."

After returning to Grand Rapids in the fall of '84, Tim did a painting of a Korean boy's head, Boy. "While it was sitting in my studio," he says, "out of the corner of my eye I had the sense that there was someone else in the room--and not in a supernatural sense. The painting was creating a presence I really wanted--an image that really engages. The vast majority of modernist work requires some sort of education on the part of the viewer, but from my experience of Lim's work I wanted art that was accessible on an immediate level. I would also like the work to have a sense of mystery, because that's what life is about."

In the first few years after Temma was born, Sherrie, impressed by the faith-based therapy that had helped her, decided to pursue a degree in pastoral counseling. She chose to study at Loyola University, and in 1989 the family moved to Chicago. Tim, who'd quit his art-supply-store job after getting a grant from Michigan's state arts council, began painting full-time.

The move made it easier for Sherrie to leave the church she'd grown up in, by then known as the Christian Reformed Church, whose prohibition against women ministers had long troubled her. After the Lowlys arrived they looked for a new church and found "a wonderful community" around a church in Evanston. But the members wouldn't permit women elders, and Sherrie says their stance on homosexuality was that gay people were "welcome if they changed." "I want a church where I can invite friends of mine who are gay and not have them feel like they're being devalued," says Tim, who's long been leery of the way religion can become "a sort of thinly veiled social control. Christianity depends on grace, not on holding these laws over people's heads." For a while, he says, they attended an "extremely gay-friendly Baptist church--so gay-friendly that we were the only straight couple and never felt completely at home."

Then someone suggested Holy Covenant United Methodist Church in Lincoln Park, which had a woman pastor named Bonnie Beckonchrist. Their first Sunday they pushed Temma up a wheelchair ramp that had just been put in, and they soon learned that the congregation had demanded and been given its first woman minister in 1974. "Within two weeks of going to that service," Tim says, "the pastor was in our home talking with us, and after that visit she wrote a poem about Temma." Having a pastor who was a woman inspired Sherrie, and in 1995 she enrolled in Garrett Evangelical Theological Seminary in Evanston, receiving her master's in divinity two years later. Her first job, which lasted three years, took the family to Galena; earlier this year she became pastor at Chicago's Berry Memorial United Methodist Church. United Methodist district superintendent Marti Scott calls Sherrie "a great urban pastor, affirming and accepting of diverse folks, with strong commitments to the justice ministries that the church is involved in."

"I was frankly dubious that she could be a pastor," Tim says, "but when I heard her preach it was eye-opening to me. She preaches from the heart and probably contradicts the notion of what most preaching is about--looking at a scriptural passage and revealing some sort of lesson. While that may be part of the way Sherrie preaches, she's more involved with helping people on their journey as opposed to saying, 'I've got the right thing here.'"

In the mid-90s Tim, who'd been curating shows without pay for a decade, got two part-time jobs at North Park University--teaching drawing and painting and working as director of the Carlson Tower gallery. "This lets me look at and promote art that I think is especially notable," he says, "and is a way of reaching further than my own aesthetic outlook."

Not that he's been unwilling to change his outlook. Several years ago he began working more and more from photographs. "Part of the reason I've moved to working almost exclusively from photographs," he says, "is perhaps close to [Gerhard] Richter's reason--whereas so much of 20th-century art was about self-expression, working from a photo-graph is a way of losing myself." In 1997 he mounted a pseudonymous show at Aron Packer Gallery; the paintings were so different from one another--abstract and realist--and so different from his usual work that even his friends didn't recognize them as his.

Over the years the subjects of Tim's paintings have included Adam and Eve; family friends; marginalized figures, from Korean laborers to African-Americans; handicapped children; and, increasingly, Sherrie and Temma. Autumn of Ashes (1985), his first painting of Temma, shows her alongside a broken krater depicting the goddess of victory, a stack of burning rice, and a Korean woman. All the paintings in the current show at Gescheidle show Temma and Sherrie on the family's couch.

"Part of my fairly political agenda is to say that disabled children are a part of life," Tim says. "These are not freaks. What I'm saying is that we should advocate for eyes of compassion that see human beings as human beings, rather than separating them into the beautiful, the ugly, the normal, the freak."

He did a series of paintings of disabled children on the bottoms of bowls that was exhibited in Korea in 1997. He says he tried to make images "with the same luminosity, the same beauty, the same grace that Vermeer gave to 17th-century Dutch women. Aiming for that is somewhat absurd, but perhaps something will happen in the viewer. Maybe they'll see differently, maybe they'll think differently--especially in Korea, where the disabled are often shunned. I think that's also a motivation in my painting of Temma. Andrew Wyeth said to paint what you love, and I think I've always agreed with that. I don't know how many times I've painted or drawn Temma, and I don't know if I ever will exhaust her as a subject."

Which isn't to say he knows what he wants people to think of her. "I think I'm increasingly not sure what I'm trying to express in my paintings," he says. "Meaning is something that I want to come from within the image rather than being imposed. One of the things that's most difficult for people in looking at my paintings of Temma is that she's so outside their comprehension--it's almost like looking at a martian. But the fact that I've spent hundreds and hundreds of hours making images of someone that most people don't even want to look at must say something about the beauty I see there."

It's common to evaluate art careers by the success the artist has achieved in the art world, but that's hard to do with Tim Lowly because his place in it is full of contradictions. His teaching position is only part-time, and it's not with an especially prestigious university. Yet he's one of only a few Chicagoans to have a painting in the permanent collection of the Metropolitan Museum of Art, and more than half of his works have sold. Nathaniel Kramer, a suburban New York collector of figurative images who owns ten Lowly paintings and drawings, wrote in an E-mail that he and his wife "were immediately struck by the quality of Tim's work" when they first saw it at the Met in the late 80s; he added that they "see thousands of works each year at galleries and art shows for every one that we purchase."

Nonetheless, Tim isn't spoken of much in Chicago's trendier art circles. "Artists who are realists and profess religious faith in their work are often not present in the so-called avant-garde community," says James Yood, who teaches art history, theory, and criticism at Northwestern University. "I think Tim is a really interesting, stupendously skilled artist--one of those artists who are almost outside time, who seem oblivious to but not ignorant of the streams of modern art and pursue a kind of personal effort. Tim is often excluded from surveys of local artists, partly because he's a realist and there's a certain impatience with high verisimilitude trompe l'oeil, and partly because his work investigates his Christian cosmology."

Tim says that few people ever ask about the Christian aspects of his work and that when he reads about older Christian art he rarely finds that the artist's faith is taken into consideration. He says he's long suspected that, particularly earlier in his career, there was "a prejudice in the art world against people who are openly Christian." Yood admits, "I was initially a little wary of the work. I was suspicious that he was a stalking horse for another agenda. But I never felt he was trying to proselytize, and I would put Lowly on the right side of the question of whether an artist puts art ahead of faith."

That's something Tim readily confirms. "Some people would probably assume that since I'm a Christian, I'd want them to see the world the way Christians do," he says. "If I operated from the position that all other beliefs are false, then that's the way I'd approach it. Many Christians would find my position untenable, but I feel I'm in no position to judge others' choices." He adds, "I'm a somewhat ambivalent member of a group called Christians in the Visual Arts. Like the art world in general, there's lots of bad and mediocre art, as well as some good stuff. With Christians the mediocre art comes from people who see the art as secondary to their beliefs, and that's problematic to me. A lot of great Christian art was made by people for whom faith was a marginal thing, at least in the kind of way we see faith. Caravaggio lived a rather fleshly life, and his paintings have a carnal quality that's part of what's appealing about them. But in fact the fleshly, carnal quality is at the heart of their spiritual quality--these are real people, and the basic idea of the gospels is that Jesus of Nazareth was a real person too. Good art moves you beyond your preconceptions. It makes you see the world differently."

Curator Greg Waskowsky, writing about Tim in the magazine Christianity & the Arts, suggests that Tim's art does just that. He says Tim paints in the tradition of van Eyck and van der Weyden, whose images, "quietly shining with the light of the infinite," depict objects "as they existed in the mind of God." He describes Tim's paintings of disabled children as "freed from the distancing, isolating glance of pity," illuminated instead by "compassion that dissolves the distinctions of our separate viewpoints--those of artist, subject, and viewer--and allows us to glimpse the world in its indivisibility."

Temma is comparatively quiet most of the time. She can lie in apparent comfort on her own and seems to like being held or touched. Her tongue often hangs out, and every so often her muscles tense in a seizure that distorts her face. "The strangeness never goes away," Tim says. "Every day when I sit with Temma and talk to her I am made aware that this is not like talking to one of my students."

He and Sherrie talk to her often. Once, after making a series of points about his evolution as an artist, Tim turned to Temma and said, "I don't know if I'm making any sense here." She gurgled in apparent reply. "She seems to be aware of something," he says. "Who knows how much. We don't even know how blind she is. Sometimes when you're sitting with her she looks like she's looking right at you. It can be disconcerting, because you don't really know."

He says that sitting with Temma--sometimes holding her on his lap, sometimes resting her legs on his as she lies on the couch--is one of his favorite things to do. "It's particularly enjoyable when she's relaxed. It's a reminder of the central value of being, and being in relation to another person. I tend to fill up my time with work or other distractions, but sometimes I'll sit with Temma and listen to music. We have no esoteric conversations and never will. On the other hand, if Temma were 'normal' there's no way she'd be sitting in my lap. Like most kids her age, she wouldn't be within ten feet of me."

Temma does understand some things. "She hates to have anything put in her mouth," Tim says, "and before I brush her teeth every morning her demeanor changes when I tap the cup I use to wash the brush--she knows something's coming. But I don't know if she loves me. Love is something you express toward an individual. I don't know if Temma even knows me. That's why it's hard for people working with Temma to maintain an interest in her--you do something for her, but she doesn't say thank you, smile, or throw the ball back when you throw it."

The largest painting in the current exhibit at Gescheidle, Shift, is painted from a time exposure. Both Temma's and Sherrie's heads are blurred, and Temma's is in two different positions with blurred streaks connecting them. "Part of what's really interesting to me about the blur," Tim says, "is that it's like a veil--a metaphor for how what we see in another person is veiled by themselves in time. I feel like I know Temma very intimately, and yet she's more mysterious to me than any human being I've ever had the pleasure of knowing."

Can Temma think? "It's unlikely that she thinks in a way that we would call thinking," he says, "because our ways of thinking are based so much on learning, experience, sight, socialization, and history, and I doubt any of those things have any bearing on Temma. I don't even think comparing her to animals makes sense. There's a certain wholeness to the way animals think that I don't think Temma is capable of. I'm pretty sure she does have an inner life, but I don't think she has the mental mechanisms that would make it correspond in an understandable way to the way we think."

The Lowlys try to include Temma in as many activities as they can. Tim once took her to his advanced drawing class, and his students made a collaborative drawing of her. She'll stay in special ed classes until she's 21, and then the Lowlys will look for some kind of day care program. If they increased her medication the seizures might stop, but they've chosen not to because it might end whatever awareness she does have. Tim says a child at her school who's heavily medicated simply sleeps all day.

The Lowlys say Amy Trebian, Temma's aide for the three years she was in Galena, was one of the few people who seemed to truly connect with her. Trebian says at first she wondered why a child with so many disabilities was at school. "We weren't really teaching her anything," she says. "Other people said, maybe it's a break for her mom and dad. But I thought, 'Maybe she's here for us--maybe we're learning from her.' It's not every day that we see someone with Temma's disabilities and realize how lucky we are. The other students' reaction to Temma was very positive. When the other kids practiced reading they wanted to go read to Temma--it helped them too. There was one boy who would often lunge at kids and pull their hair, but all the years Temma was there he never once went after her. Maybe he learned something. We had a big table where the kids did projects and stuff, and I'd take Temma in my lap and go over and sit with her so she could be a part of it. We took her to the regular lunchroom, and I'd get her a school lunch and put it in a blender. So she ate pretty much what everybody else had. I know that they say an animal kept in a quiet, dark room will eventually die because there's nothing for it to thrive on. What she was getting out of school was stimulation. She was interested. I really don't think I did a whole lot for Temma except be there, but I learned patience from her."

"There's a basic theological principle behind Sherrie's talk about seeing God in Temma," Tim says. "Jesus says, 'As you do to the least of these, you do to me.' Temma is among the least of the least, yet in some sense she's fully human. I don't identify God with George Bush or with powermongers. I feel like Temma informs me about who God is. It's not so much a matter of looking at her and saying, 'I see God,' as in what she tells me by her day-to-day existence. When God identified himself to Moses as 'I am that I am,' he didn't say who he is. God is about being, and Temma is not about any of those other things--power, possessions, ability, title, race, ethnicity. None of that has any meaning to her. By saying she informs my understanding of God I don't mean to put her on a pedestal. It's more a matter of bringing us continually to what is essential about being human."

"The essential quality of God is love," Sherrie says. "Temma loves to be touched. She could sit on your lap all day and be content, although she would have seizures occasionally." Tim adds that Temma has helped him see the line between his own selfishness and the selflessness of ideal love. "I long for my child to know who I am," he says, "but the quest for being known and receiving something in return is not the essence of love."

Lou Ann Stark-Dykema, a close friend of the Lowlys who lives in Grand Rapids and was another of Temma's best caregivers, calls Temma "one of my spiritual guides. We always call Temma the mystery you live with. She teaches you that you don't have answers, that you don't have all the control. There's also a grief that you have to learn to continually live with."

Marti Scott, who became friends with the Lowlys when they were parishioners at Holy Covenant, says, "I have such tremendous respect for both of them as parents. They have always seen Temma as a gift, and they've helped the rest of us by keeping Temma in our community. Because of that, we all have a deeper sense of the fact that Temma, and the children and adults she represents, are human beings in the grace of God, and we all learn from them. I like to say that Temma is one of my favorite theologians. I really believe that we're made in the image of God. Temma is representative of a part of God we'd never know without knowing her. There has been such controversy in the church over who speaks for God. There are people who think that the only person who can preach is an ordained pastor, and those who say that there are persons God speaks through who are not ordained but have a special gift for teaching, and others who say any human can speak for God. The thing that I like about Temma is that Temma doesn't say anything. She is the incarnate presence of love. She doesn't fight with anyone, she doesn't call anyone a heretic or a pagan. She is just very accepting, and when one thinks about the unmerited love and grace of God, she kind of personifies that for me."

Scott goes on, "We think of God as omnipotent, omniscient, omnipresent, but when you look at the woes of the world it would be difficult to explain that God has the power and wisdom to stop all of that and chooses not to. God's power may not be the way we picture it, and Temma has something to teach us about that. I remember that Tim had seven drawings of Temma in the same pose hanging in the church sanctuary, and when you looked at them quickly it appeared that it was the very same picture. But when you actually paused and really reflected on each one, you saw that Temma had moved slightly between the pictures. Many of us want the world to change, and we may even give up on God when nothing seems to change. When I looked at those images, I was reminded that if we aren't careful we'll miss the ways that God is at work in the world."

Art accompanying story in printed newspaper (not available in this archive): photos/Paul L. Merideth.

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