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Rick with his wife, Marilyn Hair, and daughter Sarah, 14. |
About a year ago, one of my former colleagues announced that he and his wife were expecting their first child. I responded by doing what any seasoned father would do: I gave him unsolicited advice. "Get as much sleep as you can now," I told him, "because you won't get much for the next few months."
What I didn't tell him is that some children never learn to sleep the whole night through. My wife, Marilyn, and I are among those for whom getting up nights with our child, as well as many other forms of unpleasantness, is a way of life.
When my 14-year-old daughter, Sarah, was four months old, she was diagnosed with a rare genetic disease called Fibrodysplasia Ossificans Progressiva. The disease involves the gradual calcification of the exoskeletal muscles. Put simply, her body is not content with one skeleton, but is growing another.
It does so by turning most of her muscles, first into masses of cartilage, and then into bones. The bones are healthy, but they grow where they don't belong -- jutting out at odd angles, crossing joints, even penetrating the skin from the inside out. Eventually, this process rigidifies the body, turning it into a living statue. Sarah still has some movement of her hands, forearms and legs, but not enough to walk, dress herself, use the toilet, bathe, turn her head or roll over in bed.
As if this disease wasn't enough, Sarah was also born with a "benign" brain tumor which would have eventually blinded and killed her had it gone untreated. The tumor was successfully resected five years ago, but her pituitary gland had to be removed, causing other medical complications.
By sharing our story, I hope to illustrate the moral responsibilities and psychological effects upon parents that raise children with severe, incurable, untreatable genetic disorders. In particular, I want to talk about the meaning of compassion.
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"This has been profoundly humiliating to me, being steeped in the American myth of self-reliance and arrogant enough to believe that I can manage on my own." |
As a parent of a special needs child, I experienced firsthand the sheer horror of learning that my child suffers from a genetic disorder. The first time a child gets sick is terrifying for any parent; but after a few dozen "bugs," you expect recovery and learn to handle each bout as it comes. But when I learned Sarah had an untreatable, incurable genetic condition, my fear became fixed.
That fear was joined by guilt when my wife and I realized that, biologically, we were the cause of our child's condition. Of course, we understood intellectually that no one is really to blame. Nevertheless, in the very act of giving her life we had condemned her to a great deal of agony.
The horror was initially mixed with a feeling that I was in the presence of something monstrous. I felt emotionally alienated from Sarah, my family, our friends, and even myself. The alienation was compounded by new demands that disrupted our familiar routines and sent us to strange places like radiology labs and wheelchair showrooms. It's as if we'd been teleported to a different world.
More than anything, I felt an overwhelming grief. I found myself suffering the death, not of my child, but of all my cherished expectations of her life. I lamented the fact that parenthood wouldn't be a joyous task of helping Sarah to thrive, but a grim and exhausting business of simply keeping her alive -- that is, of keeping her in a state of constant discomfort, unpleasantness, pain and social stigmatization.
Of course, Sarah is growing in many ways. She is a 4.0 student with musical skills and an extraordinary talent for linguistics. Given her great limitations, she's made a heroic effort not to lapse into a victim mentality. We have hope that she will go to college and eventually be a productive member of society. But it seems highly unlikely that she will ever be "independent."
Sarah's wants and needs are those of a highly intelligent and psychologically healthy teenager; but her capacity to fulfill these for herself is more like an infant. Expressing herself verbally is the sole means for controlling her environment, and for this we are glad. But we are painfully aware that she is prone to treat others simply as instruments of her will: "Find my book, fetch my craft, take me to the bathroom, scratch my itch, do this, do that."
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. The sheer interminability of the attention we give Sarah, coupled with extreme anguish, turns parental compassion into a form of suffering in its own right.
This violates society's natural expectation that hard work diligently performed will produce worthwhile results. What's more, it forces us to face the grim irony that the practice of compassion, which is supposed to involve self-forgetful attention to the needs of others, will simply give our child another day to endure discomfort and frustration, and will give her progressive disease the chance to get worse. Surely, that's not the growth that parents desire for their children!
I have come to believe that you can live through suffering only if you learn how to grow from it. You must construe your misfortunes as opportunities, convert your "fate" into "destiny," and search out the "surplus of meaning" implicit in every calamity. One of the mysterious things about God is 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.
I have grown from the horrible spectacle of seeing my daughter's body turn into a statue by learning that human flourishing is possible in spite of it. Rather than measuring Sarah's happiness by the ideals of physical beauty and economic success dictated by Madison Avenue and Wall Street, I am thrown back upon the Christian gospel. The gospel says that happiness is the result of standing in right relationship to God and neighbor, and it is only sin, not suffering, which can prevent that.
Certainly the fatigue never goes away. Indeed, it gets harder as I age. Lifting a delicate eighty-pound body twenty times a day, running countless errands, getting called in the middle of the night -- all of these have forced me to realize how far short my abilities and resources fall of the demands of our situation.
This has been profoundly humiliating to me, being steeped in the American myth of self-reliance and arrogant enough to believe that I can manage on my own. It has taught me why the Scriptures regard self-reliance as folly, and insist the experience of humiliation is an opportunity to learn humility. The fatigue has exposed my limits and my illusion of limitlessness. For this I am grateful. It has made me more open to the grace of God and more receptive to the kindness of others.
I have also asked myself why I suppose that my "labor" on behalf of my child must yield "results." Some actions must be done because they are our duty, because they are inherently right. And we grow morally when we do these actions, regardless of whether or not they seem to "accomplish" anything. That is why caring for a child who will never be "cured" is so morally salutary. It must be done because it is right -- one cannot do otherwise without grave sin.
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 which 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. He promises that if we can learn 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 undergo the collateral sufferings associated with caring for her. But I am learning how to rejoice in our sufferings, because it is there that I have felt the inexpressible peace that comes when God begins to strip us of our selfishness and our illusions.
Rick is associate professor of religion at Seattle Pacific University. He and his wife, the Rev. Marilyn Hair, have two other children, Jonathan and Mollie. This article is an excerpt of a larger article, "Unremitting Compassion: The Moral Psychology of Parenting Children with Genetic Disorders," which is slated to appear in an upcoming issue of Theology Today. We thank the editors of that publication and the staff of the SPU Response for their permission to print this article.
