By Richard Steele
Associate Professor of Religion
Photos by Jimi Lott and James Prichard
"I love Sarah's courage," Rick Steele says of his daughter. "She's got a lot of moxie." Steele and his wife, Marilyn Hair, have two other children: Jonathan and Mollie.
With Three Disabled Children, Former SPU Track Star Runs a Daily Marathon
Dottie Meyers Jennings understands better than most the paradox of Christ's words, "The last shall be first."
She sees the paradox every day in her own family. All three of Jennings' children have serious disabilities. While most people would find that a daunting reality, the 1983 Seattle Pacific University graduate and her husband, J., manage to salvage gems.
"Vibrant and happy" is how SPU Track Coach Doris Heritage describes the Jennings family. "It's tough to live the way they do, but they operate like everything is normal," says Dottie's former coach. "Through God's strength, they are absolutely working at the top of their ability."
The Jennings' oldest daughter, Jillian, 10, has cerebral palsy, a disability that severely limits her muscle power and coordination. She is legally blind and wheelchair-bound. David, 8, and Jonathan, 5, both have cystic fibrosis, a fatal genetic disease that causes their bodies to produce abnormally thick, sticky mucus that clogs their lungs. Jonathan is also autistic.
Jennings gave up her career as an English teacher to care for her children, a round-the-clock job. She rises at 5:30 a.m. to fit in an hour of running. The rest of her day is filled with teaching, clothing, feeding, cleaning and shuttling the children to medical appointments and school. Any extra time is spent volunteering at her children's schools or the family's church.
She admits that their lifestyle is often exhausting, but says her children bring her "sheer joy" and their unwavering faith has deepened hers.
"Sometimes we just live day to day or midnight to midnight. It's the paradox of God: The last shall be first; the weak will be strong; and the poor will be fed. It's so challenging, but it's wonderful to know God is who He is. He uses the least of these to show us who Jesus is."
Her children have also taught her a lesson in humility, emphasizes Jennings. "Americans want to think that money and possessions will cushion us. But we are not in control. My children have allowed me to be in a place of need. I have huge emotional needs just dealing with some of the day-to-day stress. It seems like I never get enough sleep. Sometimes I am just tired or sad.
"Some people can listen to a good sermon and that's all they need. My family needs more."
The Jennings are dependent on family, friends and their church to get through each day. Dottie's and J.'s love for literature is also a "saving grace." Most of all, Dottie, a former star distance runner for the Falcons, finds the discipline of athletics helps her make it through the tough times.
If her children's disabilities have a positive side, Jennings says, it's the joy of longing for a Heaven where her children will be whole. "There's something like the taste of Heaven that my family brings to me," she says. "It's not always just tears of sorrow, but tears of gratefulness because He is a good God."
Seattle Pacific University Associate Professor of Religion Richard Steele describes his daughter Sarah as "a typical 14-year-old kid." In many ways she is, but she also suffers a rare and debilitating genetic disease. While Sarah works at making the best of life, the members of her family -- including Dad, Mom and siblings Jonathan, 11, and Mollie, 8 -- must find ways to balance their lives and care for her.
Sarah and her mother, Rev. Marilyn Hair, recently talked about living with Fibrodysplasia Ossificans Progressiva (FOP) on the television shows 20/20 and Northwest Afternoon. Hair is a board member for the International FOP Association, and both she and Steele have attended medical symposiums, conferences and FOP social gatherings with their daughter. As a surprise for her mother, Sarah recently organized a fundraiser for FOP patients at her school.
Steele has shared the challenge of raising a special needs child through numerous speeches and articles. Last fall, he presented a paper titled "Unremitting Compassion: The Moral Psychology of Parenting Children with Genetic Disorders" at an SPU conference. The piece was selected for publication in Theology Today.
Steele holds a bachelor's degree in philosophy and classics from Haverford College, a master of divinity degree from Yale Divinity School, and a doctorate in systematic theology and ethics from Marquette University. He has taught theology and church history at Seattle Pacific since 1995.
About a year ago, one of my younger 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. This 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.
The curious thing about compassion is what I call its "double-sidedness." Compassion is both an emotion we experience and a habit we cultivate. These two elements are intertwined, so that truly compassionate people always display both. They have a capacity for self-transcendence that allows them to suffer with others, and a capacity for self-sacrifice that allows them to suffer for others. However, developing true compassion -- even for one's own child -- can sometimes be difficult.
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 from 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 exhaustive 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 to not 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 20 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 also 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.