When the Doctor has Hard News: How to Live & Love

Sarah Williams is extraordinary. You could say she had it all –  a happy marriage, a secure post as an Oxford professor, two healthy children. But it would be her third child – someone who would never have credentials, health, or success, who would teach her what it truly means to be human. Meet Cerian, whose birth day was also her death day, and whose wisdom and perfection live on to teach us all. Sarah wrote of this journey in her new book, Perfectly Human: Nine Months with Cerian. Her words here define love. Please welcome Sarah to our front porch today…

guest post by Sarah C. Williams

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.

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.

On what basis is quality of life assessed? What is a normal person?

Do normal people have a certain intelligence? 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?

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.

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.

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.

The quiet beauty of Cerian’s life goes on challenging me:

What does it really mean to be human?

 

Sarah Williamsjourney has taken her from Oxford, where she was educated, and later taught British and European political and cultural history, to Vancouver, Canada, where she taught history at Regent College. Now she and her family are back in Oxfordshire, where she continues writing and teaching.

Sarah’s poignant, powerful story of her daughter’s nine months of life gives voice to so many other families who face hard questions, lack of understanding, and the loneliness of grief, while protecting and loving a precious, short, God-given life. Her book Perfectly Human: Nine Months with Cerian is candid, vulnerable, and brave.

Read it, and share it with someone else who needs to hear about Cerian.

[ Our humble thanks to Plough Publishing for their partnership in today’s devotion ]