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hands holding a babys feet

Perfectly Human

What My Daughter Taught Me about Beauty, Worth, and the Gift of Being

Sarah C. Williams

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  • Matthew J Lynch

    A powerful and important piece. Thank you

  • Ethan R.

    I am the biological father to two children, a girl and a boy, on the Autism Spectrum, as well as the uncle and guardian to a third, a 17 year old boy who my wife (his biological aunt) and I have cared for since the age of 7. With all three of them having the ASD diagnosis, as well as the younger half brother of our nephew, we have wondered more than once as what it means to be "normal" or, more technically and clinically sounding, "neurotypical". In my nuclear family's life, my parents have lost three children, two before birth, (an early term miscarriage and a boy stillborn at term), and their daughter, my sister, of SIDS at 3 months old. The meaning of life and how fragile it can sometimes be is something not lost on them. Thank you for this article.

  • Jen

    Thanks for such a beautiful article! So true. I have declined testing for just these reasons.

  • Christina Chase

    Being physically disabled since infancy because of a genetic disease, I find everything about this article to be terribly beautiful and true. I am virtually a quadriplegic and have difficulty breathing because of my severe weakness and skeletal deformities. Is my life a "suboptimal life"? When my doctor uses the term "quality of life" I always feel a little nervous, as though my life may someday be judged useless and expendable. If physician-assisted suicide continues to be legalized, then, someday, I may very well be given the choice. Yes, the choice. "Do you want to end your suffering?" I may be asked. (And by suffering, the well-meaning official would mean my life.) I will not want to end my life, even if my life is considered low in quality or severely suboptimal. But…I would be forced to choose. Would I feel selfish and guilty if I chose to continue to live with other people taking care of me? Such a thought-provoking article. The little life of Cerian is not to be dismissed. We are all little. Let none of us be erased. Thank you, Sarah, for sharing her story!

  • Ruth

    As a mother of five, one who lives with Down syndrome and the others all are diversely human....and an OB nurse for over 40 years...I appreciated this piece on many levels. Thank you for sharing the many layers of your experience. Recognizing the gift of life and how easily culture can blur the picture...was beautifully articulated.

  • Anita

    Thank you for sharing your brave and beautiful story of redemptive love. God bless you.

The doctor’s cheery voice gave way to a clipped monotone. He left the room and returned with a female technician. I assumed he was simply inexperienced at doing ultra­sounds and bristled with irritation as the woman redid everything he had just done. Then the woman put her hand on my arm and said the words that every expectant mother hopes she will never hear: “I am so sorry, there is something wrong with the baby. We need to fetch the consultant.”

“But there can’t be,” I responded immediately. “I saw the face. The baby looks fine to me.” She shook her head and squeezed my arm. I went cold all over.

a babys foot

The consultant sat down beside me. Using the cursor and his finger for reinforcement, he highlighted different points of the tiny person inside me and murmured incomprehensible numbers. “I have to tell you, Mrs. Williams, this baby will not live. It has thanatophoric dysplasia, a lethal skeletal deformity that will certainly result in death shortly after birth. The chest is too small to sustain the proper development of the lungs.” A pause. “I suggest you come back with your partner in the morning and we will talk further about what you want to do.” A few minutes later I found myself in a side room with a second consultant. Only now did I understand what was meant by the phrase “what you want to do.” I listened while the doctor suggested dates for a termination.

“It’s the kindest thing to do, isn’t it?” I said to Paul that night after our two older daughters were in bed. Once I would have been quick to register my opposition to abortion. Now I was shocked to find that the only thing I wanted was to get the fetus out of my body as quickly as possible. We knew that a stark ethical principle was not enough to carry us through the rest of the pregnancy without hope; it was not enough to enable us to cope with the chance of watching our baby die in pain. Paul suggested we pray.

I can only say we both felt God speak a message to our hearts as clearly as if he had been talking with us in person: Here is a sick and dying child. Will you love this child for me? The question reframed everything. It was no longer primarily a question of abstract ethical principle but rather the gentle imperative of love. Before we finished praying, the chasm between the principle and the choice had been filled. As I lay down in my bed that night I realized the decision had been made.

What I did not anticipate in making this decision was the anger that it would provoke in some. One university medic presented the moral arguments in favor of abortion in a robust fashion: “To fail to abort in the case of proven fetal abnormality is morally wrong because in doing so one is deliberately bringing avoidable suffering into the world. It is an ethical imperative to abort in the case of suboptimal life.”

I felt like an undergraduate chastised for a weak line of argument in a badly written essay. I knew his words were not intended rudely or personally – they never are at Oxford – and although I tried only to muse on his argument with the distance of theory, it still kept me awake at night. I knew there was something wrong with his claim. But I could not, as yet, find a defense, and the force of my colleague’s case led me to consider whether I was, in fact, being selfish in prolonging the baby’s life. The word “suboptimal” rang in my head for days afterwards.

We knew that a stark ethical principle was not enough to carry us through a pregnancy without hope.

Silently, I formed a counterargument. My medical colleague’s argument, along with all the practices I had been pondering, presupposes a particular definition of normality, of health, and of quality of life. But what happens if the definition on which this argument rests is dubious? Whose definition of normality is it anyway? And on what basis is quality of life assessed? What is a normal person? Do normal people have a certain intelligence or skin color? Normality is a relative scale with no accepted criteria in all cultures. At one end of this relative scale we place people who are restricted by intellectual functioning, illness, age, or accident. And at the other end of this scale we place people with efficient minds and bodies. By this definition each of my three children sit at different points on the normality spectrum. Could I as a parent who loves them equally decide which one of them was most valuable, or worthy of a place on the planet?

And what happens if you can’t choose, if you can’t make decisions for yourself, if you’re stripped of agency unexpectedly, through illness or disability? Does this make you a sub-person or a non-person? Are you a pre-person before you achieve anything? And if you are born with no talents and you cannot achieve the proper formation of the body in the womb, does this mean you are not a person?

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We named our third daughter Cerian, Welsh for “loved one.” Cerian’s life ended in the hour before she was born. At that moment the presence of God came powerfully into the hospital room. It was unlike anything I have ever experienced, before or since. Weighty, intimate, holy, the room was full of God. Everything inside me stilled; I hardly dared breathe. His presence was urgent and immediate and I knew with certainty that God had come in his love to take a tiny deformed baby home to be with him. There would be no painful bone crushing for Cerian, only the peaceful wonder of God’s enfolding presence.

Cerian’s life ended an hour before she was born.

When I first found out about Cerian’s deformity and made the choice to carry her to term, it felt like the destruction of my plans and hopes. It went against what I wanted. It limited me. But it was in this place of limitation that God showed me more of his love. Up until this point, the clamor of my desires and wishes had made me like a closed system centered in on myself, on my needs, flaws, and attributes. My life, even at times my religion, had revolved around achievement, reputation, and winning respect and approval from others. I had busied myself with perfect home, perfect children, perfect job, all the things I wanted. I knew I had lost something deep and precious, but I didn’t know what it was. And the more I felt the lack of it, the harder I tried to find it through effort. During the nine months I carried Cerian, God came close to me again unexpectedly, wild and beautiful, good and gracious. I touched his presence as I carried Cerian and as a result I realized that underneath all my other longings lay an aching desire for God himself and for his love. Cerian shamed my strength, and in her weakness and vulnerability, she showed me a way of intimacy. The beauty and completeness of her personhood nullified the value system to which I had subscribed for so long.

Three years after Cerian died I was invited to address an international medical conference convened to discuss the effects of prenatal testing policies on women in Western and non-Western contexts. For three hours I was bombarded with questions. It was clear that my views on prenatal testing were of incidental importance to the group; their interest centered on my experience as a mother finding herself in a situation of having to decide suddenly whether or not to terminate a pregnancy. My story exemplified the stark reality that prenatal screening places some parents in the position of having to decide the fate of their unborn children, not merely having the option to do so.

“What did it feel like to be placed in this position?” All the questions came down to this one in the end. This “necessity to choose,” hard though it may be for Western women used to making decisions about their own bodies, is even harder for women in parts of the Middle East, Africa, and South America. Where in a Western context the identification of male and female is in most cases a benign advantage enabling parents to name the little person they are about to welcome into the world and to furnish a new nursery accordingly, in some non-Western contexts revealing the sex places the unborn child at risk of termination on grounds of gender, and mothers at risk of intolerable pressure to abort females.

The chief concern of everyone around the table was to understand how best to support women who found themselves in this invidious position. But no one asked whether this need to decide was a legitimate or bearable weight for parents, and especially women, to carry? No one disputed the wisdom of implementing prenatal screening programs to detect and diagnose fetal abnormalities.

As I listened to the stories of women from other parts of the world, the ordinary and routine custom of prenatal scanning that we take for granted in the West suddenly became strange to me as I saw it through fresh eyes. Built into the practice is a particular way of perceiving personhood, of defining autonomy and choice, of imagining female agency, of understanding and experiencing community, and of forming identity. The practice relies above all on a particular idea of choice and a definition of personhood in which the capacity for choice is of primary importance. Prenatal scans, though advised, are voluntary – they are customary rather than required – but it is expected nonetheless that most pregnant couples will choose to have one. The practice itself is understood to be morally neutral. It is the degree to which it supports and facilitates individual choice that determines whether or not it is good or bad, right or wrong.

As I listened to the debate going on around me, I remembered the details of Cerian’s small, unlovely body. Technically speaking, during the pregnancy there were only two things we knew about her for certain – two scientifically derived facts: the fact of her physical abnormality, and the fact of her biological sex. I wondered if it really is an advantage for these two particular facts to be the first things parents come to know about their children. What are the implications of this prior knowledge for human society?

Often couples wait to commit emotionally to their unborn child until the “viability” of a pregnancy is confirmed by means of a scan at sixteen or twenty weeks. I hear so many couples say, “We haven’t told anyone yet; we’re waiting until we’ve had the scan.” They speak as if the scan determines whether or not the pregnancy is real, at least in a social sense; they speak as if the scan were a marker point determining whether they can lavish their love upon the child or hold it back to protect themselves. As a practice, prenatal scanning both teaches and reinforces particular ways of thinking about the human person. It teaches the pregnant couple to ask: Is this child physically normal? This question is asked as if it were of primary importance. Whether or not the scan results reveal fetal abnormality, irrespective of whether a parent chooses to act in certain ways as a result of the information given, the practice makes everyone ask this question at a relatively early stage in the pregnancy. It may only be a tiny statistical minority of parents who choose with much grief and heartache to terminate a pregnancy because of fetal abnormality (and such parents should never be judged). But the fact that we have an almost universal social practice that renders acceptable the idea of terminating the life of a child whose physical capacities are suboptimal affects every one of us. This idea is further reinforced by a legal structure that makes such an idea not only plausible but also permissible and possible right up to full term. Moreover, we have sophisticated language to cloak the idea in moral neutrality, and we have a definition of “quality of life” to explain why such an idea is right and necessary.

Cerian shamed my strength, and in her weakness, she showed me a way of intimacy.

But do we ever ask whether this idea is just? Is it just for the majority of people to condone a social practice that permits a few to be treated in ways the majority would never permit for themselves? Would the majority of people want to be asked, before they were treated with equal dignity and respect, if they have a normal body, or if they are female? To condone this treatment for some not only dehumanizes those who are never born, it dehumanizes all of us. To make human personhood contingent in any way upon physical “normality” is to strip all of us of our inherent and intrinsic worth as persons.

Over the years I have reflected deeply on the weeks and months I spent with Cerian. That period of time felt like an age when I was in the midst of it, but in the scheme of things it was so short. I cannot help but think how easily I might have missed the beauty and the privilege of that time with her. This time of limitation and vulnerability was also a time of profound humanity during which I discovered my need of God, but also my need of others, and their need of me. For nine months every human being has the one chance he or she will ever have of being received first and foremost as a person – before anything else is known about them. At a time when so many young people struggle intensely with their physicality, with their male or female bodies, with their identities as sexual beings, with the health and appearance of their body, the nine months of pregnancy may be the only opportunity we will have as parents to receive our child simply as a person of equal, inviolable worth whether the child turns out to be healthy or sick, male or female, attractive or plain. Why are we choosing to rob ourselves of this extraordinary and unique gift?

Precious though we all understand children to be, we behave as if they were commodities – commodities that we acquire as an extension of ourselves. We have grown familiar with the idea of conferring personhood selectively on the ones we choose because we find them desirable, preferable, and acceptable. Indeed, in the Western world, choosing what we desire has become the essence of what it means to be human.

Cerian didn’t have any choices, and yet she was perfectly human.

Our society tells us that our choices are unlimited, that choice is the means to human flourishing, that to have one’s choices impaired is to be dehumanized. As a society we try to deal with suffering by controlling it, mastering it, and seeking to eliminate it. If we fail in this endeavor then at least we hide it, we silence the mention of it, we insure heavily against it, we insulate ourselves from it, we resolve to ignore it. We mask the reality of death.

And yet this idea of humanness defined by choice, into which we are all baptized, does not line up with our messy, complicated, everyday humanness. It has nothing to say when aging creeps into our bones, wrinkles our skin, reduces our eyesight, and limits our energy. It has no dignity to give us when we become dependent on others, and no dignity to give to those who care for others. It has no time beyond the moment, and no validity beyond experience. It does not prepare us for the powerlessness that comes to all of us when our choices fail, when the scope of choice narrows, when our choices are overlooked, violated, or curtailed by others. We find ourselves trapped in the contradictions of the world we have created for ourselves.

Against this backdrop, the quiet beauty of Cerian’s life goes on challenging me: What does it really mean to be human? Cerian didn’t have any choices, and yet she was perfectly human.

The overriding memory of my time with Cerian, the one I will carry with me for the rest of my life, was the glimpse I had, during the moments of her death, of the love and glory of God. That memory causes all the other recollections, good and bad, to pale in comparison. God the creator came in his love to take a vulnerable human being home to be with him. This encounter changed my life. Quite simply, it showed me that there is another way to be in the world.

Limitation, finitude, suffering, weakness, disability, and frailty can be gifts. Far from robbing us of our humanity, these things are needed if we are to be human. Without them, we strip ourselves of the opportunity to confer dignity on each other regardless of our physical and mental condition and we lose sight of the essential given-ness of human life. Ultimately, personhood is not a work of self-definition and self-creation. Instead, it is a gift.

front cover for Perfectly Human: Nine Months with Cerian by Sarah C. Williams
Read the book: Perfectly Human: Nine Months with Cerian
Contributed By Sarah Williams Sarah C. Williams

Sarah C. Williams is the author of Perfectly Human, a spiritual autobiography in which she reflects on contemporary debates surrounding identity and personhood.

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