This article by Christina Nehring on raising a child with Down syndrome is marvelous. (Loving a Child on the Fringe) I want to limit my comments to very specific elements both out of respect to how well written the piece is as well as my hope that you will also read her full article about her daughter Eurydice. This is my first of two posts on this.
In addressing the conclusions of author Andrew Solomon in his book Far From the Tree: Parents, Children, and the Search for Identity about the challenges of raising children including those with special needs as well as Peter Singer's utilitarian evaluations of life she writes the following:
Am I “cheerily generalizing” as Solomon says of other Down syndrome parents, “from a few accomplishments” of my child? Perhaps I am. But one thing I’ve learned these last four years that possibly Solomon has not: All of our accomplishments are few. All of our accomplishments are minor: my scribblings, his book, the best lines of the best living poets. We embroider away at our tiny tatters of insight as though the world hung on them, when it is chiefly we ourselves who hang on them. Often a dog or cat with none of our advanced skills can offer more comfort to our neighbor than we can. (Think: Would you rather live with Shakespeare or a cute puppy?) Each of us has the ability to give only a little bit of joy to those around us. I would wager Eurydice gives as much as any person alive.
I am so jealous of that paragraph and to paraphrase the singer/writer Jimmy Buffet talking about the song Southern Cross, dang I wish I wrote that. It echoes the wisdom of The Book of Ecclesiastes and gets to the heart of a real fear that drives abortion. My life as I planned it and see it will not reach its important ends should an unwanted child or a child that is not all I wish it to be in its capacities be introduced to my narrative. My future as I plan it is better than any other possible story for me and better for us all. Hogwash. Neither I nor my plans are so important that adjusting my understanding of either one of them threatens the greater good. A generous dose of Ecclesiastes articulated humility and perhaps an occasional listening to Dust in the Wind by Kansas may treat the vanity that plagues us.
My friend and minister Pat MacPherson tells me that, despite my emphasis on the identification of the unborn as human and determining what makes human life valuable, what bothers him most about abortion is the lack of faith represented in the decision to abort. We simply refuse to believe that our lives can be different from what we planned and still be something we love.
Everyone that I talk to that has a relative living with Downs syndrome repeats Ms. Nehring's view that the relationship changed more than her professional and personal circumstances, it changed her. The fear that our vision for our future will be abandoned loses sight of the possibility that the future us wouldn't have wanted that life anyway. If you asked 21 year-old, hard partying, atheistic, and pro-choice Jay if he would be happy as a 41 year-old Christian with a wife, three kids, and working in pro-life ministry he would have very colorfully and rudely retorted absolutely not. Yet here I am and deliriously happy. Nehring admits that had she known Eurydice had Downs she probably would have aborted her, and yet there she is writing this article about her unexpected fulfillment. We simply don't have the omniscience to judge such things either way. We certainly lack sufficient knowledge to justify ending an innocent human life to secure a possible future we believe at this moment will make future us happy.
Not all frustrations are bad. I am reminded of C.S. Lewis' A Grief Observed. While chronicling his experience dealing with the loss of his beloved wife, he articulates his fear that she will become something in memory that she was not in life. He lost the part of Joy that was continuously not what he expected. He writes:
All reality is iconoclastic. The earthly beloved, even in this life, incessantly triumphs over your mere idea of her. And you want her to; you want her with all her resistances, all her faults, all her unexpectedness. That is, in her foursquare and independent reality.
When she conformed to what he wanted her to be in his memory, Joy ceased to be Joy. The real Joy was messy and argumentative and independent. In fact, those were the very qualities he loved and most mourned losing. His point that all reality confronts us, frustrates us, and demands that we adjust is well taken. As is the recognition that we should cherish that aspect. Our dreams are as perfect as we can imagine them to be and a great motivator for our actions, but our waking hours are lived in an imperfect reality that opposes us. That opposition is not necessarily bad and is sometimes the best thing for us. It cultivates in us strength, character, and perspective that under easier circumstances would forever be lacking.
Our disturbing habit of pronouncing whole groups of human life as being excess or unneeded because of our fear that they would interfere with our plans reminds me again of Charles Dickens' A Christmas Carol (I wrote more about that here in Scrooge and the Pro-Choice Christians). The line from the Ghost of Christmas Present bears repeating. After throwing Scrooge's callous remark about surplus population back in his face, the spirit says the following:
Man... if man you be in heart, not adamant, forbear that wicked cant until you have discovered What the surplus is, and Where it is. Will you decide what men shall live, and what men shall die? It may be, that in the sight of heaven, you are more worthless and less fit to live than millions like this poor man's child.
We need to hear stories about love and happiness found through relationships with people identified more often with struggle and suffering. We need to be reminded that unexpected joy runs rich and deep. Life is not beholden to us to play out as we script it in our dreams, and we are all the better for it.
The next post will address her recognition that her daughter is not her baton bearer.