It is often easier to conceptualize the suffering from genetic diseases from the removed and theoretical perspective of theology, ethics, and philosophy. However, Dr. Richard Steele, Associate Professor of Theology at Seattle Pacific University, shared "some of the internal changes" he has experienced through the process of raising a daughter with both Fibrodysplasia Ossificans Progressiva, a rare genetic disease, and craniopharynginoma.
FOP turns "most of her muscles, first into masses of cartilage, and then into bones . . . jutting out at odd angles from normal bones, crossing joints, even penetrating the skin from the inside out," Steele says, while craniopharynginoma created a benign brain tumor that had to be removed with her pituitary gland. Consequently, Steele's daughter Sarah "has endocrine deficiencies and diabetes insipidus." And, due to the rigidity of her body from calcification, Sarah cannot "walk, dress herself, use the toilet, put on her own glasses or hearing aids, bathe, turn her head, or roll over in bed."
In his presentation, "Unremitting Compassion: The Moral Psychology of Parenting Children with Genetic Disorders," Steele discusses the characteristics of compassion. "Compassion," Steele says, "is a double-sided disposition. It is an emotion that we experience and must let ourselves experience, but it is also a virtue we must practice, a habit we must cultivate. And these two elements thoroughly interpenetrate, so that truly compassionate people always display both." Those with compassion have the capacity for both "self-transcendence, which allows them to suffer with others, and a capacity for self-sacrifice which allows them to suffer for others. Moreover, although compassion always involves a willingness to suffer with and for someone who is suffering, one who displays compassion usually retains a certain distance or detachment from the sufferer."
"But parents of children with serious genetic or congenital disorders cannot distance or detach themselves from the sufferers. This fact makes the kind of compassion which such parents display toward their children peculiar in several respects. It involves horror that the child should suffer, guilt that the parent gave the child the gene which causes the suffering, and eeriness over the child's abnormalities. It also involves grief and guilt - grief rooted in death of the expectations for your child to have a happy, fruitful life, and guilt for the feelings of grief and resentment toward the diseased child."
"How is it possible, in the midst of such overwhelming emotions," Steele asks, "to suffer-with and suffer-for your child in appropriate and helpful ways?" For "compassion presupposes a certain detachment from the victim of suffering, even as it entails identification with her." But parents cannot detach themselves from the child's suffering and limitations; instead, "they impose constant burdens and responsibilities that become, in time, a form of suffering in their own right. Suffering-with and suffering-for the child seem to shade into suffering-from the child," Steele says.
According to Steele, the second peculiarity affecting parental compassion of children with genetic disorders is chronic fatigue. The limitations genetic diseases impose upon children create a need for parental help in even the smallest of matters. "Put sharply," Steele says, "parental compassion bids us to 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."
And the third peculiarity is the "apparent futility" of it all. "For me," Steele says, the hardest thing about being the parent of a child with a genetic disease is not the horror or the fatigue, but the aggravation of investing so much to accomplish so little, or even to go backwards. I want to see improvement," he says, "but often I see only decline."
These peculiarities of parental compassion toward a child with a genetic disease, the "sheer uninterruptedness and interminability of the attention that the parent must give to the child, coupled with the extreme anguish he feels," Steele says, "turns parental compassion into a form of suffering in its own right."
Through the experience of this parental compassion-suffering, however, Steele found that "instead of rescuing us from our troubles, God redeems us through them, and that instead of reducing our sufferings, God uses them to increase our wisdom." It was through Sarah's genetic disease that Steele was made aware of his illusions that happiness depends on physical beauty and economic productivity. Faith, hope, and love are all that is needed to make life worthwhile, Steele says; "Sarah can have these . . . and so can I." It was through the sheer exhaustion of caring for Sarah that Steele discovered his limits, his need for others, and the folly of his self-reliance. And it was through struggling with the seeming futility of his labors that Steele learned "to ask myself why I suppose that my 'labor' must yield 'results.'" Steele learned to care for Sarah, simply because it is the right and good thing to do. And through Sarah, Steele has experienced the sacrament of grace; "I am not only the minister of this sacrament," Steele says, "but perhaps even more than Sarah, its beneficiary."
"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," Steele says. "But I am 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."