I have been reflecting more and more about my sense that I know “why” Penny has Down syndrome. I’ve concluded that I was wrong in much of what I previously thought. In general, we’ve heard two “reasons” that Penny has this extra chromosome. One is because we, as her parents, need a child who is not a high-achieving, intellectual, varsity athlete, etc. In other words, we need her as a rebuke to our type-A personalities. The other is that we, as her parents, are such special people that we have been given a special responsibility and a special child. In other words, we have been given her as a reward. Rebuke or reward. As a punishment, as a gift. Either way, looking at Penny through this lens reduces her to a lesson we need to learn, and it makes her existence all about us.
Recently, I was reminded of the story in John’s gospel where Jesus’ disciples ask him about a blind man. They say, “Who sinned, this man or his parents, that he was born blind?” I don’t think anyone is asking exactly that question, but perhaps we could rephrase it as, “Who needed a rebuke (or reward), Peter or Amy Julia (or both), that Penny was born with Down syndrome?” Jesus’ answer is instructive. He says, “Neither this man nor his parents sinned, but this happened that the glory of God might be revealed.”
I’ve been rephrasing that answer too: “Neither Peter nor Amy Julia was so good, or so bad, that they received Penny as a rebuke or reward, but this happened that the glory of God might be revealed.” That answer raises its own problems and questions, but at the end of the day I think it is the better one. It recognizes Penny as a person with a purpose instead of a lesson for us to learn. And it reminds me that Penny’s extra chromosome is not a way of casting judgment on us, as if we were not fit to raise a typical child. Nor is it a way of casting judgment on others, as if we were part of a small group capable of raising a child with Down syndrome. Penny is Penny, and as we’ve said before, we want to receive her as the gift of life that she is, recognizing that—just like the rest of us—she has places of great need, and places of great strength.