Sara is 30 years old. She sits in a wheelchair or on the floor or on a couch. She cannot speak, but sometimes she is very noisy; she smiles or howls, cries or emits a deep guttural laugh. She has the body of a small woman with hips and breasts, but she cannot walk or talk or use her body in any way other than to perform the most basic human actions of eating, sleeping, sneezing, drooling, and other functions of existence. When she eats, she smears her food on her face and grabs at the items she likes. She likes to play with chains of colored beads and to throw them on the floor so that someone will have to pick them up. Her arms are the most mobile parts of her body and she uses them actively to wave her beads around, or just to flail at an incomprehensible world. Sometimes she becomes ill and seems to be failing, but her little body is strong and she recovers. She cries out in pain occasionally and no one knows why. Other times she crosses her skinny legs with their knee high stockings and sits defiantly looking out at the world. Her clothes and her body are clean; she is well groomed, well fed and well cared for. Sara understands such simple commands as "no," "yes,""wait," and has emotional attachments to her family and some few others. She likes hugs and kisses. She avoids eye contact, but she will sometimes glare at people who approach her and other times she will grab someone's hand, smile and seemingly attach herself to that person. A minute later, she drops the hand and looks elsewhere. Her greatest joy seems to be music. When she hears the organ or the voices of the choir, when music is played at home, especially when it is lively and fast, her whole body responds to the rhythms and the pounding beat and her face glows.
Sara was born in 1983. Soon after, she was diagnosed as microcephalic. She will never get better. She is just herself, Sara. Her mother left her professional career and became and has remained Sara's primary caretaker. Her father helps with caretaking, lifts Sara in and out of the car, sits with her, talks to her, holds her hand and loves her. Her brother and sisters grew up with Sara and appear to have unremitting love for her. They are purposely involved in her care. Although there are respite care and other support services for Sara, there is little other relief for the family. Sara's mother says that Sara makes her family better. She says she, her husband and the other children are kinder because of Sara. An uninvolved observer can see that the family always deals with Sara lovingly and that it is good for children to care for one another. The observer wonders.
Why?
Why does Sara exist? She cannot learn or work or contribute to society. She is a drain on the economy and on the health care system. She has no apparent usefulness to anyone. She takes up space. Providing for her is not cost-effective. She has depleted her family's resources for thirty years and has deprived her sibs of time and love that their parents could have devoted to them. She is not a productive member of society. She has nothing to offer. She is a waste of time. Her family must have some hidden deep resentment toward her.
Last year Sara was very sick and possibly near death. Some observers sighed and said it would be a blessing for her to go. Her family was distraught, sleepless with anxiety, and feared that they would lose Sara. When she recovered, they rejoiced and led her proudly down the aisle at church to her accustomed place in the third row, right side. Sara was back and we all were relieved and happy.
Why?
Sara has been a member of Christ Episcopal Church since 1992. Everyone observes her and accepts her and loves her, but asks the inevitable questions. When we see her day after day, week after week, year after year, we wonder why. Why is she here? What possible reason is there for Sara to be alive?
Somehow, however, we all know why. Sara jerks us into awareness, forces us into love. Sara reminds us of the perversity, the dignity and the mystery of being human. Sara has no measurable or monetary value in our culture and she is exactly the one Jesus was talking about when he said, 'Whatever you do to the least of my people, you do unto me" (Matt. 25:40).