Part I: The Last Children
1 Samuel 16: 6-11
“When they came, [Samuel] looked on Eliab and thought, ‘Surely the Lord's anointed is now before the Lord.’ But the Lord said to Samuel, ‘Do not look on his appearance or on the height of his stature, because I have rejected him; for the Lord does not see as mortals see; they look on the outward appearance, but the Lord looks on the heart.’ Then Jesse called Abinadab, and made him pass before Samuel. He said, ‘Neither has the Lord chosen this one.’ Then Jesse made Shammah pass by. And he said, ‘Neither has the Lord chosen this one.’ Jesse made seven of his sons pass before Samuel, and Samuel said to Jesse, ‘The Lord has not chosen any of these.’ Samuel said to Jesse, ‘Are all your sons here?’ And he said, ‘There remains yet the youngest, but he is keeping the sheep.’ And Samuel said to Jesse, ‘Send and bring him; for we will not sit down until he comes here.’”
Just as David was the last child, the child who was pushed to the side, looked down upon, and made to wait in the fields as his brothers were considered for an anointing, Steven and Scott were last children. The two are now full grown adult twins. When they talk about their lives, they talk about how it has not been easy for them and how they have been shunned by others. Scott recalls that, as he was growing up, school was “tough” and “really hurtful.” He says that he is “still recovering from those years” in which he felt like an “outsider” and “people chose to harass” him “everyday.” His brother Steven adds, “There were a lot of people who picked on people like us.”
Steven and Scott live with a condition known as Williams Syndrome. In strict biological terms, this means that unlike most other humans they were born without 26 genes in the long arm of their chromosome 7. In practical everyday terms, this can mean a number of different things. It can mean that they have distinct physical features such as small upturned noses and small chins, wide mouths and full lips as well as a puffiness around their eyes, eyes which often have starburst colorations on them.
The syndrome can additionally mean that one is highly verbal and sociable. Scott says, “Sometimes I am friendly and then sometimes I am too friendly.” His brother explains that it is important for people with the syndrome to know that “there are boundaries” when it comes to engaging others. For example, more so than the usual child, they have to be taught that “it is not okay to talk to strangers.” Otherwise, they run the risk of unintentionally upsetting others and receiving negative responses despite, or perhaps ironically because, of their efforts to be friendly.
One might further say that another part of having the syndrome has to do with the labels people with the syndrome are given. Even the polite labels would seem hard enough to live with. A Wikipedia entry describes the symptoms of the syndrome with phrases like “mental retardation,” “lack of common sense,” and “low intelligence.” One might say to be born with Williams Syndrome means that one is born “the last of the children” in the eyes of some.
Part II: The First Discovery
Listen now to the story of Jesse sending for David in the fields.
1 Samuel 16: 12-13
“He sent and brought him in. Now he was ruddy, and had beautiful eyes, and was handsome. The Lord said, ‘Rise and anoint him; for this is the one.’ Then Samuel took the horn of oil, and anointed him in the presence of his brothers; and the spirit of the Lord came mightily upon David from that day forward.”
Just as David had a moment of revelation in which he discovered his special worth and significance, Steven and Scott had their own discovery. The two feel as if they “were born different” and “live in a different world.” They were not diagnosed with Williams Syndrome until they were fifteen. For them, one of the greatest moments of affirmation in their lives came when they first attended a convention for persons with the Syndrome. It was there that Scott had what might be described as his own experience of being anointed, of being affirmed for the beautiful person that he is. About the convention, Scott remembers, “It was wonderful. It was like being at a cloning convention. I'd turn around and somebody would look like me. I'd turn around again and somebody else would look like me. It was really neat. You could interact with people just like you and they could have such a big heart. I felt understood. I felt relaxed and I felt that people really cared.”
Part III: The Second Discovery
1 Samuel 16: 14-20
“Now the spirit of the Lord departed from Saul, and an evil spirit from the Lord tormented him. And Saul's servants said to him, ‘See now, an evil spirit from God is tormenting you. Let our lord now command the servants who attend you to look for someone who is skillful in playing the lyre; and when the evil spirit from God is upon you, he will play it, and you will feel better.’ So Saul said to his servants, ‘Provide for me someone who can play well, and bring him to me.’ One of the young men answered, ‘I have seen a son of Jesse the Bethlehemite who is skillful in playing, a man of valor, a warrior, prudent in speech, and a man of good presence; and the Lord is with him.’ So Saul sent messengers to Jesse, and said, ‘Send me your son David who is with the sheep.’ Jesse took a donkey loaded with bread, a skin of wine, and a kid, and sent them by his son David to Saul.”
Just as David became affirmed for his gift as a musician, persons with Williams Syndrome frequently find a similar affirmation. A trait that often accompanies the syndrome is the gift of musicality. One aspect of this is that a number of persons with the syndrome have an ability coveted by many professional musicians. They can “identify isolated musical notes.” A New York Times article about a music camp for those with the syndrome describes a student performing a sonata “composed effortlessly in a one-hour lesson.” The student played his composition by reading from “a series of curly scribbles and drawings but not a single note.”
So what happens when you have a camp full of highly social and highly musical campers? You have a joyful combustion of high-octane energy. Amidst the wooded hills of this camp in the Berkshires of Massachusetts, “cheering and sing-alongs erupt from the camp buildings…all day” long. Instructor Marc Dennis says, “This is the land of high-fives. The kids are constantly congratulating one another. I’ve never seen people react to each other’s music with such warmth and abandon.”
Ultimately, the camp gives its participants a different view of themselves than what they normally get from the rest of the world. One 17-year old camper named Alec is the subject of a filmed National Geographic profile. Alec plays both the accordion and the piano. About his life, he says, ''I am so glad that I have Williams, 'cause I got the music in me, man!''
In celebration of the music that is in all of us, let us now stand and sing in English the first verse of hymn #
402 “De Colores”…
Part IV: To Love and Be Loved
1 Samuel 16: 21-23
“And David came to Saul, and entered his service. Saul loved him greatly, and he became his armor-bearer. Saul sent to Jesse, saying, ‘Let David remain in my service, for he has found favor in my sight.’ And whenever the evil spirit from God came upon Saul, David took the lyre and played it with his hand, and Saul would be relieved and feel better, and the evil spirit would depart from him.”
David came into Saul’s life, and Saul loved him greatly. One might imagine David’s playing itself was an act of love for the troubled king. What I find remarkable is that Saul was never simply written off as unfit for being king due to mental illness. Perhaps this was because Saul had the advantage of being a veteran of the throne, but Robert Coles, a Harvard professor and a prolific author of books on the psychology of children, talks about how poor children in this country are often not in such a lucky position. In the concluding chapter of a book entitled The Spiritual Life of Children, Coles talks about the harm that can occur when children are diagnosed as having one disorder or another in a clinical and psychological language that can be cold and implicitly laced with negative and condemning judgments. He found that in the psychiatric team at his hospital this manner of speaking was more forthcoming depending upon the social class of the child under examination.
In our first reading for today, Samuel says that “the Lord does not see as mortals see; [for] they look on the outward appearance.” Coles and his team were caught up in the outward appearance of the children. Coles, however, makes another important observation in his concluding chapter. The central thesis of his book is that every child should be viewed as a pilgrim on a spiritual journey through life. What a difference it is to move from the cold clinical language of judgment where some kids are troubled and the seemingly rare kid is healthy to the spiritual language of affirmation where all of us are pilgrims.
As we grow into adulthood, we are still pilgrims crisscrossing through each other’s lives. At times we might seem like tramps or vagabonds, but in the end, we are all pilgrims on a path that one day leads us to “that final step” where we enter into “that territory whose character none of us here ever knows.” I have come to believe that part of developing our spiritual literacy is coming to see others as pilgrims, persons on a journey, persons who cross paths with ours and who give us the opportunity to give love and receive love.
Scott and Steve feel that they have been on a journey. They feel as if they have each learned and grown from their experiences. Scott believes he has become stronger, wiser, more able to “accept things as they come,” and more positive about life despite its difficulties. His brother Steven feels especially grateful. He says, “I give all grace and glory to [God] upstairs for helping me accept myself as who I am.” He believes his parents were a big reason for this. He says that without them he could not have become the person who he is today.
When asked if there is anything other people should know about Williams Syndrome, Scott says, “What I'd like to say is very real and from the heart. I'd like to say that there should be an acceptance in every walk of life. That includes people with Williams. If for a day, or for a moment, people who didn't know us would step in our shoes, and see what it was like to be us, I think they would have a different opinion and a different heart. I think they would actually be a loving human being.” Amen.