Fibrodysplasia ossificans progressiva

INTERRUPTED SLEEP

The Moral Psychology of Parenting Children with Genetic Disorders1

About a year ago, one of my younger colleagues, fresh out of graduate school, announced that he and his wife were expecting their first child. I responded by doing what any seasoned, middle-aged father of three would do: I gave him some unsolicited advice. "Get as much sleep as you can before the baby is born," I told him. "You'll want to remember afterwards how good it used to feel." Gamely playing his part in this obligatory ritual of male bonding, my friend groaned in mock agony at the thought of all those midnight diaper changes and 2:00 A.M. bottle feedings to come-as if this thought had not yet occurred to him. Of course, both of us had been through such rituals countless times, and understood that the giving of dour "advice" is the masculine way of offering heartfelt congratulations. Joking about the troubles of parenthood is how we share its exquisite joys without lapsing into maudlin sentimentality. Both of us knew-and each of us knew that the other knew-that having to endure a few months of wakeful nights goes with the territory, and also that these months pass quickly as the child learns to sleep the whole night through.

What I did not tell him, at least just then, is that not every child does learn to sleep the whole night through, and that for the parents of those who do not, the memory of how good eight hours of unbroken shut-eye feels is just that-a fond but distant memory. My wife Marilyn and I are among those for whom interrupted sleep, as well as many other forms of daily and nightly unpleasantness, is a way of life. Our oldest daughter, Sarah, now thirteen, gets us up two or three times every night. Whenever she needs to use the toilet, shift position, have an itch scratched, a pillow fluffed, or finds that she has dropped any of the three items she always takes to bed with her (a luminescent wristwatch, her crook-shaped plastic "reacher," and an old headband she uses to screen the morning light from her eyes) she calls out, "Maaaaaaahhhm" or "Daaaaaaaaaad." And one or both of us run, or stumble, to her bedside. Often we know from the sound of her voice which of these various things she needs even before we get there. Sarah has developed-though she may not be aware of this-a distinct "call" for each need, with its specific tone quality, volume level, and note of urgency.

Sarah cannot do these simple things for herself because she suffers from two catastrophically debilitating physical disorders. I am not going to explain these disorders in full detail, but I will say enough about them to indicate the kind of unremitting, round-the-clock care she requires. This will help to illustrate the issues that I discuss here, namely the moral responsibilities and psychological effects upon parents of raising children with severe, incurable, untreatable genetic disorders. Thus, my focus will not be on suffering children, but on the parents who must suffer with and for them.

The first of Sarah's two conditions is a rare genetic disease called Fibrodysplasia Ossificans Progressiva (FOP).2 As its name implies, this condition involves the gradual calcification of her exoskeletal muscles. Put simply, her body is not content with one skeleton, the one she was born with, so it is growing a second. It does so by turning most of her muscles first into masses of cartilage, and then into bones. These are perfectly healthy bones, complete with perfectly healthy marrow, but they grow where bones do not belong-some jutting out at odd angles from normal bones, some crossing joints, some even penetrating the skin from the inside out. As the years go by, this second skeleton gradually rigidities the human body, turning it into a kind of living statue. Sarah's case has progressed much faster than most. She still has some movement of her hands, forearms, and legs--enough to feed herself, do certain handicrafts, and (with the aid of sticks) type on a computer, but not enough to walk, or dress herself, or use the toilet, or put on her own glasses or hearing aids, or bathe, or turn her head, or roll over in bed.

As if FOP were not enough, Sarah was also born with a craniopharyngioma, a kind of brain tumor. Although "benign" (not cancerous), it would have blinded her, and eventually killed her, had it gone untreated. We first learned of its existence when she was eight years old and began having vision problems. It was successfully resected, and five years later there is no evidence of recurrence. But her pituitary gland had to be removed, so she has endocrine deficiencies and diabetes insipidus. She takes numerous hormones orally, and her diet is limited to eight hundred calories a day.

FOP occurs in about one in two million births, and craniopharyngioma in about one in fifty thousand. So the chances that anyone would have both conditions are about one in one hundred billion--a number larger than the total number of human beings who have ever been alive. And because her case is medically unique, no one can say for sure how best to care for her. Marilyn and I must figure that out as we go along. Of course, we have a phalanx of doctors, nurses, pharmacists, physical therapists, genetic counselors, respite care workers, insurance agents, wheelchair technicians, adaptive equipment vendors, teachers, teacher's aides, lawyers, financial consultants, and sympathetic friends and relatives who provide all sorts of valuable information, advice, assistance, and medical care. God bless them all! We could not manage without them, and over the years we have been exceedingly fortunate in finding competent and compassionate people to help us. But--and this brings me to the main topic of this paper--there are distinct differences between the sort of compassion displayed by even the best professional caregiver or well-meaning friend and that required of a parent of a sick child.

THE DOUBLE-SIDEDNESS OF COMPASSION

It will help to begin by giving a general account of this emotion. Or should we call it, rather, a virtue?3 Indeed, part of what makes compassion such a remarkable human quality-and part of what makes those who possess this quality such remarkable human beings-is what I shall call its "double-sidedness."4

On the one hand, it is clearly an emotion. That is, it is something we experience, something we feel, something that happens in us. And it can be an agonizing experience, although, as we shall see, it can also be a very joyful one. Yet, curiously, it is a secondary, indirect, and vicarious experience. That is, it is my experience of someone else's suffering, my identification with the misery I observe in another. And this identification is usually spontaneous and uncontrived (though we would not say "automatic"). It arises in me unbidden, and is thus a mark of my own vulnerability to another person's distress. Indeed, genuine compassion seems to be something that is almost torn out of us by the grievous circumstances under which someone else lives.5 Any attempt to induce this emotion (or any other emotion) in ourselves by a sheer act of willpower, under an onerous sense of duty, will only result in a simulacrum of the real thing.

And yet there is a sense in which compassion is voluntary. Or at least it is a trait of character that we must intentionally cultivate and that typically grows in scope and intensity as we mature morally. For although we do not exactly "choose" to be compassionate (in quite the same way that we might choose, say, to perform one specific action instead of another) nevertheless we can, over time, train ourselves to be open to the needs of others. Indeed, compassion can become so deeply embedded in our character, and so forceful in its regulation of our conduct, that it might better be called a "disposition." That does not imply that it is less intensely felt than other emotions, but only that it is less vicissitudinous. Some emotions, such as anger, come and go rather quickly, as circumstances dictate. But dispositions are notable for their constancy and for the way they shape large areas of our life. Compassion is that way. It gentles our character as a whole, rendering us more patient and respectful toward others, more attentive to and interested in people's thoughts and feelings, even when they are not suffering.

Compassion is also distinguished from many other emotions because it must be learned. We do not ordinarily have to learn how to "feel" emotions: they seem almost to be "hard-wired" into our nature (although what we feel emotional about, and how we express our emotions, will change as we grow). But compassion is an acquired trait of character, which we must foster and develop by putting ourselves in situations where we can practice it. Certainly it would be a mistake to suppose that some people simply have a taste or a knack for it. Nobody "enjoys" being compassionate (though, again, we may "take joy" in helping others), and it does not come naturally to us. Indeed, those who do acquire this trait often come by it the hard way, that is, by undergoing some intense suffering of their own, and perhaps also by receiving the generous care of others in their time of need. It often takes a tragedy to activate our human capacity for self transcendence. We might even say that learning compassion takes a kind of "conversion," a transformation in our fundamental orientation toward life, away from our endemic self-preoccupation and toward an open-hearted concern for the well-being of others.

The fact that compassion is both voluntary and learned differentiates it from other kinds of suffering, which are involuntary and connate. Thus, a starving man does not need to "let" himself experience the pain in his empty belly. But a well-fed man who reads a newspaper account of an African famine must, in a sense, "let" himself feel the agony of the victims. For he could, of course, shrug off such grim tidings and move on to the sports page. This is why our various ways of responding to other people's sufferings are morally appraisable. Those who willingly open themselves to the sufferings of others are to be admired for their courage and sensitivity. Those who are unwilling to do so, or who, from long habit of indifference, have grown quite incapable of entering imaginatively and caringly into other people's situations, are deemed psychologically and/or morally defective.6

At the same time, the number of suffering people for whom I can reasonably be expected to feel compassion is rather limited. For I am not God, who alone is both willing and able to bear the sorrows of the whole world. People who have not learned to differentiate between those to whom they owe compassion and those whose sufferings are none of their business are prey to a refined, self-deceived, and self-destructive grandiosity.

This brings us to the other side of compassion. Precisely because it is voluntary and learned, we can call it a moral virtue and the lack of it a vice. To possess a virtue (or a vice) is to be in the habit of acting in a certain way. And the actions that spring from compassion are those aimed at alleviating the sufferings of others--perhaps even at great cost to oneself. This is what differentiates genuine compassion from condescending pity on the one hand and phony moral outrage on the other. Some will react to the news of the famine by shedding a few alligator tears for the "poor unfortunates." Others will indulge in a bit of armchair speechifying about how awful "the System" is. But the truly compassionate person will avoid both bathos and bluster, and quietly figure out something constructive to do to put food in the mouths of the hungry. Genuine compassion .involves the capacity to focus one's attention on those in need, and a corresponding indifference to one's own reputation for being "compassionate." The conversion that compassion works in a person renders her immune from the desire to think of herself, or to be thought of by others, as "sensitive" or "well-informed about the world's problems." True self-sacrifice is truly self-forgetful.

Of course, just as I cannot feel everybody else's sufferings, I cannot help every sufferer. I must target my efforts or waste them. For again, I am not God, but at best only one of God's instruments. And it sometimes happens that those whom I most wish to help cannot be helped very much. Or rather, the help I can give them does not consist in alleviating their suffering, but in refusing to abandon them to it. For people whose pain is irremediable or whose grief is too deep for words, the most I may be able to do is to sit in silent vigil with them or to pray for them. But in such cases, what may appear to be a purely "useless" ministry of quiet presence will really be a far more compassionate thing than a flurry of pointless activity or a barrage of distracting chatter.7 The value of the "active" element in compassion is measured not by the amount of sheer energy expended on the sufferer's behalf, but by the suitableness and sincerity of what is done.

Thus the double-sidedness of compassion: As an emotion, it is something we feel, something elicited from us at the sight of another's distress. But as a virtue, it is something we must labor to develop, a disposition of responsiveness to human need, a certain alertness to situations that call for our intervention, as well as a sensitivity to the types of intervention that are suitable to given circumstances. And these two elements thoroughly interpenetrate, so that a compassionate person always displays both. She will have that capacity for self-transcendence that allows her to suffer with others, and that capacity for self sacrifice that allows her to suffer for others. She will have that limpid emotional vulnerability that only comes when a person begins to shed her fear of being hurt and her need of being in control. Conversely, she will have that robust practical availability for others that only comes when a person begins to see her time, energy, and resources as gifts to be shared, rather than property to be hoarded.

PARENTAL COMPASSION FOR SUFFERING CHILDREN

Having offered this general description of compassion, I now want to describe the specific character of this "virtuous passion" as it manifests itself in parents who must exercise it toward children with serious genetic or congenital disorders. For although I believe that genuine compassion always involves both suffering with and suffering for another, it seems obvious that the precise way in which it is displayed in any given case depends in large measure on the nature of the social relationship between the sufferer and the person of compassion. Thus, the character of a parent's compassion for an ill child differs from that of a doctor's compassion for a patient, and again, from a conscientious suburbanite's compassion for a starving orphan. Both the degree of emotional involvement felt and the nature of the merciful actions performed differ substantially among these cases. Moreover, it would be a mistake to regard any of these cases, however exemplary in itself, as morally superior to the others. For the authenticity of someone's compassion is at least partly a function of the social appropriateness of her conduct vis-a-vis the sufferer.8 My aim, then, is not to recommend the way in which a parent exercises compassion upon a child with birth defects over other ways, but simply to describe the oddities and special demands of the case.

Based on my own experience (which, admittedly, is a perilously small sample from which to draw conclusions), there seem to be three peculiar features of parental compassion for special-needs children. The first of these is the sheer horror that one feels upon learning that one's child suffers from a generic disorder or congenital defect. Now, horror is an exceedingly complex emotion, an amalgam of at least four other emotions: fear, guilt, eeriness, and grief. Let me say a word about each of these in turn.

Take fear. When any child falls ill, her parents get worried. In most cases, the child eventually recovers from or outgrows the condition, and her parents' anxiety subsides. Of course, children get sick often, and so their parents are often anxious. Yet the very frequency of childhood illness can serve to reduce the intensity of parental anxiety over time. The first time your child gets sick is terrifying; but after going through a few dozen "bugs," fevers, and infections with her, you come to expect recovery and learn to handle each bout as it comes with a certain businesslike calm. But when your child begins to manifest strange, painful and/or debilitating symptoms that the doctor cannot at first explain, and when, after she undergoes the usual battery of tests and procedures, you finally get a positive diagnosis and learn that she has an untreatable, incurable genetic condition, your fear becomes "fixed," and at a rather high level.

But fear is soon joined by three other emotions. One is guilt, which arises when you realize that, biologically, you are the cause of your child's condition. Of course, at an intellectual level you may understand that no one is really "to blame" for this catastrophe. Nevertheless, you feel viscerally that you have committed some kind of outrage against your child, and that in the very act of giving her life you have condemned her to a great deal of agony.9

Another component of honor is a sense of eeriness. You find yourself gazing at your child and thinking, "She's different. She's abnormal. My God, she's a ... freak!" This sense that you are in the presence of something monstrous may cause you to feel emotionally alienated from your child, from your family and friends, and even from yourself. The eeriness of the child's condition itself is compounded by the fact that caring for her places many new and onerous demands on your schedule, disrupts your familiar routines, and sends you at times to strange, distant, and forbidding places, such as radiology labs and wheelchair showrooms. It is as if you had been teleported to a different world.

Finally, the situation produces grief. You find yourself suffering the death, not of the child, but of all your cherished expectations for her life. You find yourself thinking that parenthood will not be a joyous task of helping your child to thrive, but a grim business of simply keeping her alive-which is to say, of keeping her in a state of constant discomfort, unpleasantness, pain, and social stigmatization.10

These four emotions blend with and feed back upon each other in bizarre ways to generate what I am calling "horror." For example, feeling that there is something eerie about your own daughter can itself be the cause of yet more guilt. Moreover, these emotions can produce still other ones, as when you begin to feel resentment toward the person who is the occasion of all your fear and grief . . . only to feel yet more guilt for resenting someone who has done nothing wrong.

Now the question arises: How is it possible, in the midst of such overwhelming emotions, to suffer with and for your child in appropriate and helpful ways? For as we have seen, compassion presupposes a certain detachment from the victim of suffering, even as it entails identification with her. This is what we meant by saying that compassion is a kind of "secondary" or "vicarious" suffering. But the parent of a child with a severe genetic disorder does not have the luxury of detaching herself from the victim's sufferings and limitations: They impose constant burdens and responsibilities that become, in time, a form of suffering in its own right. Suffering with and suffering for the child seem to shade into suffering from the child.

The second feature that affects, or distorts, the way in which parents express compassion toward children with genetic disorders is the chronic fatigue that eventually sets in. People who visit our home are astounded by the sheer number of times that Sarah asks for things. Her wants and needs are those of a highly intelligent and psychologically healthy teenager; but her capacity to fulfill these for herself is more like that of an infant. Of course, unlike an infant, Sarah can express herself verbally. Indeed, that is her sole means of controlling her environment, and she has become a master of self-expression and assertiveness. For this we are very glad, but we are painfully aware of its shadow side. She is prone to treat other people simply as instruments of her will, without bothering to observe the proper social conventions that indicate respect and gratitude: "Find my book, fetch my craft, turn on the TV, turn off the light, take me to the bathroom, reposition me in the chair, serve me dessert, set up a game, scratch my itch, get me a washcloth, do this, do that, run here, run there." On and on and on, all day, every day, forever. It seems absurd to make her say "Please" and "Thank you" every time. Indeed, it would be cruel, for it would only underscore her dependency in the most humiliating fashion. On the other hand, it is infuriating for those who love her and want to help her to be bossed around and manipulated.11 Put sharply, parental compassion bids us do what we can to make her life as pleasant and normal as possible. But doing so turns our lives into an endless string of errands, favors, and interruptions. One is reminded of the ancient Greek myth of Sisyphus. He was sentenced to push a huge rock up a steep hill, but whenever he got it to the top, it would roll down again. In our case, however it is not a single boulder that we must push; it is ten thousand pebbles. This is why, at least in my own case, decisionist ethics is so unsatisfactory, and narrative ethics so attractive. As the parent of a child with so many little demands and requests, I need a sense that my life is not some kind of Sartrian "bad infinite," just one damned thing after another, but an integrated whole. I do not "decide" to take Sarah to the toilet each time she has to go: I simply do it. The question is, can I do it in a manner that will not make Sarah feel guilty or ashamed for having to ask me to do it? Only if I can feel, so deeply that I am hardly "conscious" of feeling, that such tasks are all of a piece, parts of the "storied" whole that is my life . . . and hers.

This brings us to the third distinctive feature of parental compassion for the child with severe disabilities: its apparent futility. The net result of carrying out the routines of good care sometimes seems to be nothing more than buying ourselves one more day of hassles. Milton Mayeroff has argued that one of the marks of genuine caring is its willingness to adjust itself to the condition of the "other," so that the other will grow:

If caring is to take place, not only are certain actions and attitudes on my part necessary, but there must also be developmental change in the other as a result of what I do; I must actually help the other grow. To determine whether I am caring, I must not only observe what I do, feel, and intend, but I must also observe whether the other is growing as a result of what I do.12

Mayeroff is surely right that caring for someone means paying attention to her concrete and ever-changing needs and interests, and to the ways in which one's actions on her behalf actually touch and affect her. You think more about the other than about yourself, more about whether your conduct is helpful to her than about the fact that you are trying to help her. All of that certainly applies to the parent who must care for a child with severe disabilities. But is it true that the child "grows as a result" of what the parent does? The child's observable growth may be negligible. Indeed, when a child has a progressive disease, the care she needs simply to stay alive may have the grimly ironic effect of buying her the time for her symptoms to get worse. And surely that is not the kind of "developmental change" Mayeroff wants the caring person to promote. True, Sarah is growing in many other ways. She is a straight-A student, and is very gifted in vocal music, poetry, and some handicrafts. We have good reason to hope that she will go to college and find a career suitable to her capacities. So perhaps our parental efforts on her behalf would satisfy Mayeroff's requirements. But it is hard to imagine that Sarah will ever become "independent" or "self-determining," as Mayeroff believes that caring people should help the objects of their care become. And to the extent that Marilyn and I devote ourselves to enabling all three of our children to grow toward such goals, our labors for Sarah will always seem unavailing in comparison to those for the other two. Or at least the results will be meager in proportion to our investment of time, energy, and money. For me, the hardest thing about being Sarah's father is not the honor I feel at her sufferings and limitations, or the fatigue I feel in caring for her, but the aggravation I feel at the fact that it takes so much to accomplish so little. I want to see results . . . and so often I do not.

Thus, like all kinds of compassion, the compassion of the parent for a special-needs child is "double-sided." It reveals the characteristics of emotional identification with the victim's suffering and of concrete action ordered toward promoting the victim's well-being. But so overwhelming is the parent's emotional and physiological reaction to the sufferings of the child ("his own flesh and blood"), and so constant and arduous is the work that raising the child requires, that parental compassion may be said to differ significantly from, say, the doctor's compassion for her patients or the suburbanite's compassion for famine victims. The parent is constantly reminded of the child's needs, limits, and pains--and hence of his own responsibilities and inadequacies. Again, I am not suggesting that this constitutes some kind of special moral heroism. I only mean that the sheer uninterruptedness and interminability of the attention that the parent must give to the child, coupled with the extreme anguish he feels, turns parental compassion into a primary and direct, not merely a secondary and vicarious, form of human suffering.

THE PEACE THAT PASSES UNDERSTANDING

Parents must either learn to live with this, or they will eventually collapse. In the concluding section of this article, I discuss how I, for one, have learned to live with the horror, fatigue, and sense of futility arising from the task of raising Sarah.

Before doing so, I wish to make two things quite clear about the following argument: First, it is not meant as a "theodicy."13 I have no interest in "justifying the ways of God," if that turns out to mean (as it usually does) giving a rationale for the evil that God "permits" in the world, and thereby giving some kind of cosmic legitimation for the suffering of little children . . . and their parents. Second, it is not meant as an implicit censure of those parents of special needs children who have "collapsed." I am no more interested in criticizing the coping abilities of other people than I am in justifying the ways of God. In particular, I am profoundly contemptuous of those who appeal to Scripture (for example, "God . . . will not let you be tempted beyond your strength, but with the temptation will also provide the way of escape . . ." [1 Cor 10:13]) in order to argue that those who buckle under the pressures of parenting a child with special needs must lack faith. I do believe in divine providence, but I do not believe that the causal weave of creation is so tight that God has specifically chosen just these parents to raise just these children, and has guaranteed these parents all the resources necessary for the job--if only they are willing. That is, nothing I am about to say should be used as a stick for beating those parents who simply cannot manage to hold themselves, their marriage, and/or their family together. Those who are defeated by the extraordinary demands that parental compassion imposes are themselves deserving of compassion, not reproach! My aim here is very modest and, in keeping with the autobiographical and introspective approach I have used throughout this essay, I simply will catalog some of the things I have learned from my situation that have immeasurably enriched my life. Whether I might have learned these lessons in some other way, I do not know. That God expressly caused Sarah's illnesses in order to teach me these lessons, I certainly do not believe. Here I shall content myself with stating the good that God has wrought for me, or rather, the conversion that God has wrought in me, through my situation.

Put quite simply, I have come to believe that you can live with suffering only if you learn how to grow from it.14 You must construe your misfortunes as opportunities, convert your "fate" into "destiny," and search out what might be called the "surplus of meaning" implicit in every calamity. There is, of course, nothing especially novel about this belief. It is a central theme in the Bible and in much Jewish and Christian literature. The God in whom Jews and Christians believe is mysterious, and one of the most mysterious things about this God is that instead of rescuing us from our troubles (as we would like), God redeems us through them, and that instead of reducing our sufferings (as we would prefer), God uses them to increase our wisdom (see for example, Ps 37, Ps 73, and Job 42:1-6). Each person must apply this belief to his or her own situation.

How, then, have I grown from the horror of seeing my daughter's body turn into a statue? Certainly I will never "outgrow" the horror itself-or if I do, it will be I who have become monstrous! But I have nevertheless grown from this horrible spectacle by learning that human flourishing is possible in spite of it. When Sarah was first diagnosed with FOP, my hope was for a cure that would enable her to live a "normal" life. When that hope died, I was forced to ask whether it was still possible for her to live a "happy" life. And the answer was "Yes," provided that her happiness did not depend on attaining the ideals of physical beauty dictated by Madison Avenue and the ideals of economic productivity dictated by Wall Street. But then it dawned on me how thoroughly I had internalized those ideals and how I myself was imposing them on Sarah-and in so doing, helping to condemn her to a life of frustration and disappointment. But in refusing to be the servant of the powers and principalities that are hell-bent on adding emotional insult to my daughter's physical injuries, I was thrown back upon the Christian gospel, which offers a quite different view of human well-being, and one that does not assume that disabled people are disqualified from attaining it. For the gospel says that happiness is the result of standing in a right relationship to God and neighbor, and it is only sin, not suffering, that can prevent that. Thus, the honor of my daughter's condition exposed the demonic illusion under which I, for all my theological training, was still unwittingly laboring, namely that happiness is a function of our fame, fortune, or photogeneity. It brought home to me the liberating truth that faith, hope, and love are finally what make life worth living. Sarah can have these. , and so can I.

And how have I grown from the fatigue caused by the constant care of someone with serious disabilities? Certainly the fatigue never goes away. Indeed, it gets worse and worse as I age, for all my efforts to keep healthy and fit, to furnish our home with adaptive equipment, and to make use of the available resources for respite care. The Scriptures admonish us not to "grow weary in well-doing" (Gal 6:9; 2 Thess 3:13), but even if one manages not to grow weary of well-doing, one eventually grows weary from well-doing. Lifting a delicate eighty-pound body twenty times a day, running countless errands, getting called in the night--all of these things have forced me to realize how far short my abilities and resources fall of the demands of our situation. This realization has been profoundly humiliating to me, being thoroughly steeped in the American myth of selfreliance and arrogant enough to believe that I can manage on my own. But it has also taught me why the Scriptures regard self-reliance as folly, and insist that the experience of humiliation is an opportunity to learn the virtue of humility. Thus, my fatigue has exposed both my limits and my illusion of limitlessness. For this I am grateful. For I have become more able to accept help and advice from others without reluctance, resentment, or shame, and to depend less on my own strength and ingenuity. In other words, it has made me more open to the grace of God and more receptive to the kindness of others.

Finally, how have I grown from the sense of futility that dawns on you when all your labors on behalf of a child with a severe, incurable, untreatable, and progressive disorder produce such limited and ever-- diminishing results? By now it will be obvious that, for me at least, the answer is to reframe the question, and to ask myself why I suppose that my "labor" must yield "results." Are there not certain activities (such as prayer) whose value is intrinsic to the doing of them, and not dependent on any extrinsic outcomes that may accrue? Is not our tendency to estimate the value of an activity by its outcomes an example of the modern worship of the idols of production and consumption, hard work and competitive play? Does not our furious quest for greater profits, higher scores, faster times, better mousetraps, and bigger monuments to ourselves plunge us into a frantic state of perpetual dissatisfaction, rob us of the present moment, and force us to fixate on what we will do, will get, will make, or will have--tomorrow? Our need to see "results" for everything we do thereby renders any activity that is performed for its own sake, because of its inherent worth, suspect in our eyes. But that is precisely why caring for a child who will never be "cured" or "healed" or "rehabilitated" is so morally salutary. It must be done, regardless of the fact that it does not seem to accomplish anything, simply because it is right, simply because one cannot do otherwise without grave sin. The sheer immediacy of the child's needs, the sheer inescapability of the child's claim on our attention, can teach us to be fully present where we are, and not always rushing off to somewhere else.15 Sarah has become for me a kind of anchor to the here and now, and caring for her a kind of sacrament, an outward and visible sign of the inward and spiritual grace that meets us where we are and as we are. And I am not only the minister of this sacrament, but perhaps even more than Sarah, its beneficiary.

St. Paul urges us to "rejoice in the Lord always" (Phil 4:4), even in suffering, and even in the suffering that comes from suffering with and for others. And he promises that if we can manage to rejoice in all circumstances, we will experience the "peace of God, which surpasses all understanding" (4:7). I certainly do not rejoice that Sarah must suffer as she does, or that Marilyn and I must undergo the collateral sufferings associated with caring for her. But I am slowly learning how to rejoice in our sufferings, because it is there, more than anywhere else, that I have felt the inexpressible peace that comes when God begins to strip us of our selfishness and our illusions.

1This article is a revised version of one I delivered at a conference titled "Science and Suffering: Genetics and the Problem of Evil," which was cosponsored by the Center for Theology and the Natural Sciences and the Counterbalance Foundation, and held at Seattle Pacific University, Seattle, WA, on October 17, 1998. I wish to thank the participants in this conference for their helpful comments on the paper, and my wife, the Rev. Marilyn S. Hair, who faithfully and cheerfully practices the demanding virtue that I have tried to describe herein.

2For a more extensive discussion of FOP, and of Sarah's case in particular, see my "Accessibility or Hospitality? Reflections and Experiences of a Father and Theologian," Journal of Religion in Disability and Rehabilitation 1 (1994), 11-26 and the literature cited in notes 7, 9, and 10. Great strides in understanding the disease have been made since that time by Frederick Kaplan, M.D. and Eileen Shore, Ph.D. and their collaborators at the FOP Laboratory of the University of Pennsylvania School of Medicine in Philadelphia, and several promising treatments are currently being developed. This research is summarized in J. Michael Connor, "Fibrodysplasia Ossificans Progressiva-Lessons from Rare Maladies," The New England Journal of Medicine 335/8 (August 22, 1996): 591-3 and in Wade Roush, "Protein Builds Second Skeleton," Science 273/5279 (August 30> 1996): 1170. A longer and less technical description of the disease and recent research is Thomas Maeder, "A Few Hundred People Turned to Bone," The Atlantic Monthly 28112 (February 1998): 81-9. Unfortunately, there is little likelihood that the debilitating effects of the disease in its advanced state can be fully reversed, and thus the recent research has little bearing on the present article, which describes the effects upon the parents of having to give day-to-day care to children with severe and permanent disabilities.

jThe following account of compassion depends heavily on three sources: Lawrence Blum, "Compassion," in Amelie Oksenberg Rorty, ed., Explaining Emotions (Berkeley: University of California Press, 1980), 507-17; Simon G. Harak, Virtuous Passions: The Formation of Christian Character (New York: Paulist, 1993); and Milton Mayeroff, On Caring (San Francisco: Harper & Row, 1971 ).

Although neither Blum nor Harak specifically describes compassion as "double-sided," both have observed this characteristic. The second and third sections of Blum's article, for example, are titled "The Emotional Attitude of Compassion" and "Compassion and Beneficent Action," respectively. And Harak's expression, "virtuous passion," in its quite intentional paradoxicality, is meant to point out something that modern psychology often overlooks or denies, namely the moral appraisability of the emotions. I have borrowed the

term "double-sidedness" from Gustaf Aulen, Christus actor (New York: MacMillan, 1931), 31, 35> 56-60, 67. But Aulen's use of the term has nothing directly to do with moral psychology.

5This emotion is sometimes so intense that it produces somatic effects, such as a flood of tears or a "pit in the stomach." Such manifestations are suggested by the word for compassion used in the Greek New Testament, namely splanchna. The literal meaning of this term is "bowels" (cf. Acts 1:18, where it is used with reference to Judas Iscariot's gruesome death). But in several places it refers to the "gut feelings" of personal affection among Christians (e.g., Phil 1:8, 2:1, Phlm 7, 12, 20) or, what is more apropos of the present argument, of intense commiseration with the sufferings of others (e.g., Matt 9:36, Luke 10:29-37, 2 Cor 7:15, Col 3:12, 1 John 3:17).

6Lawrence Blum writes: "My neighbor suffers; in `suffering with' him there is a sense in which I suffer too, but my suffering is much less than his" ("Compassion," 513). There is a certain prima facie truth to this statement: The starving orphan suffers more than the compassionate newspaper reader. Yet, I would prefer to locate the difference between suffering and compassion, not in the intensity of the agony endured, but in the fact that the latter contains an element of intentionality and vicariousness that the former lacks. And might there not be cases in which that very intentionality actually heightens the suffering of the compassionate person to a degree greater than that of the primary sufferer? As a Christian, for example, I believe that Christ experiences my sufferings to an infinitely greater degree than I experience my own. Moreover, as I shall argue later, the parent of an infant who has just been diagnosed with a genetic disorder may suffer, at least for a time, far more acutely than the child. For the parent can foresee, or at least imagine, what is to come for the child, even though the child may not yet exhibit painful or debilitating symptoms.

7On "presence" as a Christian virtue, see James Wm. McClendon Jr., Ethics: Systematic Theology, volume 1 (Nashville: Abingdon, 1986), 106-9.

8This is why an excess of compassion is just as blameworthy as a deficiency of it. Hence we rightly condemn both the parent who is too "distant" from her children and the nurse who is too "involved" with her patients. Of course, as Aristotle taught us, virtues that are practiced in ways disproportionate to what the circumstances call for are really vices, in this case indifference and over-protectiveness, respectively.

9It may, of course, be your spouse's genes, not your own, that caused the defect. In that case, you may feel resentment toward your spouse rather than personal guilt. These are certainly very different emotions, and they will have significantly different effects on your self-concept and on your relationship to your spouse. I suspect, however, that as alternative ingredients in the complex emotion of honor, resentment, and guilt (that is, blame and self-blame, respectively) function in more or less the same way. The same goes even if the doctors cannot determine which parent is the donor of the "bad" gene, for then one experiences both blame and self-blame by turns.

'Upon receiving the crushing news that one's child has a genetic disorder or birth defect, parents may suppose that the future has suddenly grown unrelievedly bleak. They realize that many of the wonderful things they dreamed of for their child will never come true, and that many ghastly things they never imagined before may be in store for their child and for themselves. I suspect, however, that most parents soon discover that special needs children, like all other children, have an irrepressible capacity to bring their parents joy. Indeed, I have come to believe that one of the chief moral responsibilities that parents of special needs

children bear is to show the wider community that human flourishing does not depend nearly as much as we tend to think on "perfect health" and body beautiful.

"I shall bypass the question of how parents should provide moral and spiritual training for children whose capacity to sin, just like their capacity to do everything else, is affected by their impairments. This is a topic for another article. But to give the reader a sense of the peculiarities and subtleties of the problem, I might simply ask him or her to ponder the following question: How does one instill the virtues in a person who is physically incapable of practicing most of the vices?

'12Mayeroff, On Caring, 39.

13For my views on theodicy, see "All or Nothing: Reflections on the Suffering of Children, Prompted by Albert Camus' The Plague," Stauros Notebook 18 (Winter 1998).

'14See Viktor E. Frankl, Man's Search for Meaning: An Introduction to Logotherapy rev. ed. (New York: Washington Square Press, 1963).

15This, I suspect, is one reason that we are so obsessed with medical research in our day. It is not just that it promises to "relieve human suffering," but also that it purports to "give hope" to those who suffer; it allows them to live where modern people are most comfortable living: in the future. Moreover, I suspect this is why we are increasingly tempted to kill people whose sufferings are unrelievable (a practice we call, euphemistically, "euthanasia" or "physician-assisted suicide"), namely, that we cannot bear the presence of people whose sufferings are a standing reproach to the present limits of medical science, and who probably will not live long enough to benefit from the "results" of tomorrow's experiments. Their suffering thus becomes an embarrassment, even to themselves.

Richard B. Steele is Associate Professor of Theology at Seattle Pacific University.

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