A few weeks ago, my eighth grade students were on the Gospels of the New Testament. To explain why we had four gospels that all told different stories of Jesus, I started the class by having them each write a description of me in list format, and then we put up two student's versions of me up with a list of words my friends have used to describe me. In all three classes, the lists ended up being very different from one another, to the point where an outsider coming in wouldn't assume they were talking about the same person.
Outside of the class experience, I had another version happen to me, when I read a fellow church member back home's perspective of my sister Sara. My first response was that while it was a truthful account of Sara, it did not reflect my version of her. Both my father and I shortly thereafter wrote our own stories of Sara. I got my father's permission to post his story up here on my blog along with my own.
Sara is small, with fine-boned wrists and a slender frame. She would have been a petite woman even without her disability retarding her growth, but as it is I dwarf her, although I myself am not what one would call tall. She is fair, with pale skin, dirty-blond hair kept short, and china blue eyes. She is visibly disabled, sitting in her purple stroller; her limbs don't always go in the direction she plans and parts of her face and head are slightly disproportionate. She drools often, and chews on anything she can get into her mouth. The fronts of all her shirts and dresses are permanently stained from this, no matter how often we wash her clothes or how many detergents we try.
Her entire life is marked and shaped by her disability. When the family is asked to explain exactly what is wrong with her, we respond that she has microcephalus, that parts of her brain did not develop and as a result she has profound mental retardation, cerebal palsy, and seizure disorder. If we are asked to explain the limits of her disabilities, it is often easier for us to explain what she can do than what she is unable to do. The former is a lot shorter of a list than the latter.
Sara is unaware of this, just as she is so unaware of her disability that it ceases to have any meaning to her. Sara doesn't know what she cannot do, or how strangers might see her. Sara only knows what she can do. She knows that she can play with all sorts of toys, though her favorites are her music box and her beads. She knows that she can recruit people passing by into playing with her if she drops her beads in front of them. Since she mostly deploys this tactic at church, inside the family we often say that she's taking Jesus's instruction to be fishers of men rather seriously. Sara knows what she likes and doesn't hesitate to make her opinions known. We know that her favorite color is purple, because she always picks it if she's given a chance. We know her favorite foods in a similar way, she will always make her way straight to them if given half a chance. No chocolate cake is safe if it is within arm's length, and she's always willing to redefine arm's length if the end result is chocolate.
We know as well what Sara loves. She loves her family, and will sometimes stop us as we walk past and pull us down into a hug that only ends when she's done with it. She loves music of all kinds, and will laugh with joy when she sees it played live. She lights up and bounces when she goes to places she likes or when she recognizes people she enjoys, and she's better at remembering people's faces than the rest of the family combined.
We know her personality. We know that she is extroverted, because she's happiest when there are people around her to interact with. We know she is stubborn, and will not cooperate if it's not what she wants to do. She knows her routines, and gets indignant when people change them on her without her permission. She is creative and determined, and has frequently ended up in places we didn't think she could reach, or grabbed things we didn't think she could get at. She loves playing with textures, and sometimes that means she has messed up my father's cross-stitch or torn important documents because the feel of ripping paper or tangled threads was interesting to her.
No one in the family is unaware of the difficulties that life with Sara can present, and has presented in the past. There are things we have not done, places we have not gone, because Sara would not make it there. There are rough days, days when it takes extra effort to take care of her, days when her stubbornness is more of a challenge than not. But at the same time, none of us can imagine a life without her, or understand when people ask us if we ever are bitter or resent her. She is loved because she exists, in the same way we love the rest of our family members. If anything, because we never have fights with her and all of her issues are purely physical, we kids sometimes found it easier to love her than we did our other siblings when we were young and fighting with one another.
A member of our parish described our daughter Sara as she sees her, Sunday mornings in church, and used her as a lesson in how we as Christians are supposed to take care of “the least of these”. My daughter responded on her blog that this was a story that contained the truth about Sara, but that it wasn’t her truth. She provided an alternate version, which was true for her as a sister to Sara, and suggested that my narrative and my wife’s might be different. Here’s my story.
First, the facts. Sara is thirty years old chronologically, and between one and two years old developmentally. Even that isn’t completely accurate, in that Sara is younger than that in some ways, and older than that in others. She is microcephalic, meaning that her brain is too small and incompletely developed, so that her head appears to be too small for her small body frame. The poorly-developed brain means that some of the brain cell connections are miswired, so she goes through epileptic seizures if they are not controlled by medication. The poorly-developed portions of her brain also mean that she won’t develop or learn with time.
Her disability is really spotty. She can’t take care of herself, but can remember that after meals, we wash her hands first and then her face, and remembers (every time) to try to hide her face from the washcloth. She can’t talk, but she can vocalize enough to communicate emotions and feelings. She has an incredible memory for faces. The first time we showed up at the church we are at now, she enthusiastically greeted a woman we thought was a total stranger. It turned out, the woman worked as a sign language interpreter at a summer camp Sara attended a year and a half earlier. No, she doesn’t understand sign at all. She’s also the best judge of character we’ve ever seen. A couple interviewed my wife about taking care of their adopted daughter. All we knew about him was he was a used car salesman. Not ten minutes into the interview, Sara crawled up into his lap. He and his wife are two of the best parents we’ve met in day care, but Sara knew it first. Margaret mentioned her love of music in any form.
None of this was apparent when she was born, and she didn’t show any signs of disability until her brain growth virtually stopped after six months. Over the next few months, she just didn’t develop much further, and by the time she was a year old, we knew she would be profoundly affected. Of course, with the slow onset of the disability, we had a chance to adjust to that disability very slowly as well. We had no conscious period of adjustment to her condition, and neither did her siblings, both older and younger. I believe that my wife and I really haven’t been changed that much by being her parents, but my kids have grown up being much more caring and accepting by growing up with her.
We did have to deal with a few religious prejudices over time. There were those who suggested that Sara was disabled because of something we did, some type of profound sin that either Jane, or I, or both of us had committed, so that we were being punished for that sin. Closely related to that was the belief that if we only had enough faith, we could pray and Sara would be healed. Her continued disability was due to our lack of faith. I reject any notion that Sara is either a punishment or a test of faith for us, and I’ll avoid any faith tradition that suggests that either is true out of hand.
The opposite tack was taken by other well-meaning friends, who have suggested that God gave us Sara because we are somehow more blessed, more patient, more caring or more loving than other parents, and therefore, we are “blessed” to have her in our life. First, I don’t feel that blessed or that special. In addition, there’s a lot of other kids who are equally disadvantaged, that might, or might not have the same opportunities that Sara has had to be loved. There are at least three other sets of parents in our church that have been foster parents to difficult-to-place children, and even adopted the hardest cases when the foster children cannot be placed back with their parents, and there’s a couple that had to fight their daughter to get custody of their grandchildren. Sadly, they just succeeded when their daughter died, probably due to a fatal drug interaction. Our priest and his wife is one of the three foster parent couples, and is probably losing one of their adopted daughters, born deaf, losing her sight, and now hospitalized by some form of autoimmune disease. Comparing ourselves to them, we’ve taken care of our own daughter, who is a delightful, loving child, in spite of her disabilities. These other couples have voluntarily taken on difficult or hopeless cases. They deserve the praise more than us.
At the same time, how many normal children have poor parents that don’t provide adequate role models. How many disabled children don’t have great parents, but don’t make it into the foster care program. How many disabled or at-risk kids are trapped with no foster parents or adoptive parents in their future? To claim that God intended Sara to be born into a loving, caring home is God’s will when so many other children don’t have those same advantages mocks God’s benevolence.
These are the family stories. Carole's version can be found linked here: http://cecdayton.wordpress.com/2013/11/11/the-least/