Seven months since I last wrote a chapter for George (and for me). In the meantime, I was pregnant and then terminated the pregnancy at 19 weeks on December 19, 2008. Most believe I had a miscarriage, a spontaneous abortion.   On most days I have come to peace with my, with our, decision, because I still believe it was the best thing to do for our family. The baby girl had Down Syndrome. I do not think we could have managed caring for such a disabled child, or that a person would want to come into the world this way, or that it was fair to Ruby to be responsible for her sister once we were gone. I felt terribly sick throughout the pregnancy and my youngest sister has commented that I probably intuited there was something wrong from the beginning. I never felt connected to the baby, although many have experienced this raising a toddler while carrying another child.

I question whether this child, whom Ruby named Coco early on and let us know she was a girl (even though we only learned of the sex after the abortion) was a gift from God that I chose to reject. Or was Coco a test, one that has let me know that I am stronger than I had ever believed, to empower me, to pull a tighter knot between JP and me, or a test to let me know exactly who I am. Am I a murderer or a martyr? Was I supposed to accept my limitations and understand them, or have pushed my limitations to better understand life?

In any system that can be modeled, the future behavior can be calculated from a known or given present situation even if the rules of the game include some probabilistic properties. If the agents plus the rules of the game are a chaotic system then the following are true: given two present states that are arbitrarily close to each other in the space of their degrees of freedom, the short term future is that they stay close to each other but the long term future is that they may be arbitrarily far apart in that space. An equivalent way of saying this is that, given knowledge of the state in the present, there is no way of knowing with precision the state in the long term past. This unpredictability implies that there must be a considerable amount of random looking behavior in the system as it develops over time.

During the two and half days that we had to make our decision, I had to come to grips with what I believed God was: would I go to Hell for my actions, would I be forgiven, was this payment for the costs of past sins, or an introduction to sin? I tried to articulate my feelings to Ruby in a letter I wrote to her a day following the procedure:

…When making this kind of decision, which has to be made immediately, you have to figure out what your faith is very quickly. Who is God? Why is this happening? What are the consequences? Many revelations come at once, and pieces of the theological puzzle start fitting together. You pulled out your Children’s New Testament and asked me to read you stories from it. We found one about fish, how some were good and others bad, a metaphor for “godly” and “ungodly” people, and how “godly” people go to Heaven, while the “ungodly” people do not. And instead of frightening me, which is what fundamentalist religions do – work from fear and guilt in order to gain power and political control – it made clear how false this idea is. There is no such thing as “godly” and “ungodly.” We are all God’s children. He loves us all. God is love, and that it all. God is not human. Humans judge, humans inflict pain, humans are jealous. God is not. God only knows love, and we are not made in God’s image, and yet are still creations of God. There is nothing you can do that will make God not love you, but you can choose to not love yourself. There is no hell; we create hell on Earth for ourselves. Hell is in our minds and on our streets. There is no devil out there to trick you, to try to lead you into damnation. You are the only one who can take yourself to damnation; it is your choice. There will be no judgment when we die; we all go to the same place, as energy, with the rest of the energy of the universe. We write our own stories, our own narratives, and make of it what we want. We can tell, or believe, any tale we read or hear, and some tales are more believable and powerful than others. There is no ultimate truth, except for love. Love is what we strive and live for; love is where we are going; love is the reason why we have created the concepts of good and evil. We are looking for ways to be closer to love, and have to find our way there. We can never be like God – all loving, but we can try. And so every decision we make, we hope to do out of love. When Dad and I were driving home from Denver, we saw the most gorgeous sunset, the sky was ablaze with yellow, and at first I thought that was a picture of hell, but soon saw it was heaven, a gift from God, and perhaps it was Coco looking down at us, letting us know that she was back in heaven, that she would be our guardian angel and watch over you, watch over us, for our lives. That is a story we can tell to ourselves and believe in, or we can condemn ourselves forever. It is our choice. We terminated a life that we believed would be painful for everyone – for Coco, for you, for us, for our entire family, for society, all trapped within a life of limitations. Through human creation and science, we were given the opportunity to make a decision to not allow life to continue under such circumstances, and we took that opportunity. We chose to be free. We don’t often get those kinds of opportunities. Most times decisions are made for us, and we have to learn to live with them.  There is an empowerment that comes with making such moral choices, because it allows you to see who you are, and who you are surrounded by. I am overwhelmingly blessed to have Dad as my husband and as your father. He is an exceptional person. I am just as blessed to have you in my life. You are remarkable, and deserve the very best that we can provide for you. I hope that one day you will understand the decision we made, and that we made it out of love for our family. To keep us whole. Coco will always be with us. She was our sacrifice, and I will be forever grateful to her. I am more alive because of her. I see more clearly now than ever how precious life, healthy life, is, and how precious our lives are, and all that we can do with our lives.

I love you,
Mommy

There are many who think that cultures recreate themselves generation after generation and they call the unit of cultural transmission a meme. Cultures too evolve, making successful adaptations in response to their own fitness landscape, and the cultural evolution is the result of changes in the structure of memes. An example of a meme is the cultural tradition of shaking hands in greeting, which presumably evolved from an earlier meme of a right-handed palm forward salute designed to show the other person that you were not armed. The handedness is preserved throughout the evolution and there are cultural varieties, perhaps thought of as other phenotypes of the meme, such as the Jamaican right handed greeting that begins with knuckle contact and ends with a footsie movement.

The human genotype includes a propensity for social activity including helping someone else or a group, even at the apparent reduction of one’s own gain.

In organizations the agents can be thought of as members of the genotype, and the structure of the organization including the norms of behavior can be thought of as the culture of the organization as expressed through its own memes.

I still have yet to tell George about what really happened. I surmise that like another friend of mine, he believes that it is biology, and an abnormality of human biology, and that there is nothing unethical in what I, we, did. Perhaps just a result of survival of the fittest, which allowed for genetic testing and safe Dilations & Evacuations (D & E: the two-part procedure performed to remove the over 14-week old fetus from the uterus). I should ask him. I will, when he returns from Costa Rica with Patti. He doesn’t like the beach, she says, but she was anticipating the time away in warmth. It has been rather warm here, especially for January and February when we traditionally get the worst storms.

In summarizing Steven Pinker, George writes, “In 1628 William Harvey showed that the human body is a machine that runs by hydraulics and other mechanical principles. In 1828 Friedrich Wöhler showed that the stuff of life is not a magical, pulsating gel but ordinary compounds following the laws of chemistry. Charles Darwin showed how the astonishing diversity of life and its ubiquitous signs of design could arise from the physical process of natural selection among replicators. Gregor Mendel, and then James Watson and Francis Crick, showed how replication itself could be understood entirely in physical terms.

“The Christian community came to appeal to men who felt deserted …to be a Christian brought more protection from one’s fellows than simply to be a citizen. Churches gain support because of the way they deal with the demons of oppression and want: they interpret the horrors of everyday life in supernatural terms, and seek to prove their spiritual powers in struggles against witchcraft. Disease, exploitation, pollution, drink, drugs, and violence, taken together, can account for why people easily accept that they are under siege by demoniac forces, and that only divine intervention can save them.”

When I emailed George in late January, 2009 that we had lost the baby, he wrote back: Oh dear, sorry about the loss. Virgil wrote, “And grief at long hard last breaks a way for the voice.”

Maybe this event will help to strengthen my voice, remove me further from judging and self-righteousness, open myself wider to the truth.

If we ask why humans are so successful as a species, easily the most fit at survival amongst all the species, it is certain our evolved brain capacity and our language are key to our dominance as a species on this planet. This appetite or drive to have explanations for things, to understand how it works, has helped us to make better use of the stuff of our environment. For example we learned that heating iron ore with limestone created metallic iron, and that metallic iron could be cast or forged into horseshoes, wagon wheels, gun barrels, and so on. Because the knowledge could be communicated, others could share in the progress, and the wheel, once invented, did not have to be invented again. If the appetite for understanding how things work has helped us become a more successful species (we make more children, who make more children) then that explains why it is a common human trait.

A base justification for the loss of this baby could be that this child will never reproduce and therefore not move the species ahead. But that is not fair, and I know it. It may, however, be a good argument for name-calling such a termination “eugenics” as Hitler saw it. These are the accusations posted online that I have made myself read, on several occasions. I know how angry (mostly religious) people are at me for having done what I did. Many with Down Syndrome relatives view my act as a statement that their loved one’s life has no value.  They write how much love, kindness, understanding, unselfishness, and ability (including speaking two languages) their loved one expresses, and are bewildered (more like infuriated) at someone’s denial of such a pure existence. Of course, the over 90% of people who have chosen termination after genetic testing won’t write about it. I have read very few statements and they are heart-breaking, too. You will be hard-pressed to find the stories about families and extended families that have been destroyed emotionally, structurally and financially because of a Down Syndrome child. You will only hear this through candid conversations.

I question and re-question if, above all, we did deny a magnificent gift. I imagine a child with not only severe intellectual but physical disabilities, some of which will never change, some which demand constant medical attention. I think about the soul inside of that body. I contemplate survival. And even though I have read about Down Syndrome children who also suffer from mental illness and are violent and angry, most Down Syndrome children do seem to have a loving, sweet, guileless nature (although, interestingly enough, I have never known a person with Down Syndrome, and if I were to raise such a child wouldn’t I have had some kind of opportunity for familiarity beforehand, some kind of comforting and reassuring sign?). I have heard Down Syndrome people described as missing any hateful, deceptive, or cruel genes. But, then again, if there is a basic instinct for survival, no matter what the intellectual level, wouldn’t such a vulnerable and dependent person have to offer some kind of incentive for its own survival?

If souls can attach and detach itself from the physical body, I may be able to meet Coco one day, her soul inhabited by another body. This is the best that I can hope for. I don’t think there will ever be a day that I don’t think of her, and wonder. But if I don’t move forward, then I might as well not have survived either.

Posted in chapters | No Comments