Remembering Ethan at Christmas

In Life and Death

Ethan James Olson-Getty was born on Monday, August 31, 2009 at 3:00 in the afternoon. His entry into the world was fast and silent. When his dusky-purple face first emerged, Eric wasn’t even sure he was still alive. But when my final wrenching contractions freed his shoulders and he was, at long last, welcomed into our arms, his heart was still beating. Although he never took a breath, his heart continued to beat for almost two hours and his delicate tongue made the tiniest hints at an attempt to suckle.

Soon after Ethan’s birth, Spencer, our pastor, joined us and anointed Ethan with oil, naming him in life and death as one of the great company of God’s own. Spencer told me later that while I was in labor he waited outside the delivery room door, where he could no doubt overhear my labor groans, and slowly read and reread Isaiah’s achingly beautiful promise that someday there will be an end to this agony of infants dying on the day of their birth.

I expected that Ethan’s birth would be anguished or even traumatizing. For months, Eric and I worried about how we would respond to his physical condition and to caring for him as he died. We knew that he would not look like a healthy baby and, because of the failure of his neural tube to close, that his brain tissue and spinal cord would be exposed. We tried to prepare ourselves by studying his ultrasound photos and looking at pictures on the internet of other newborns with similar disabilities, but we still wondered if our love would be strong enough to embrace a child so disfigured. And we feared that the process of dying might be agonizing for Ethan. We worried that we would lack the courage to wait with him helplessly while he suffered.

But what I hadn’t anticipated was how much joy would be present in Ethan’s birthing room. The hard work of grieving and longing for our son for so many months set us free to take delight in all that was beautiful and holy about his birth. Our grieving was very much like the painful and hard work of labor – we were pushed to the very brink of what we could bear, but we discovered in the process that we were stronger than we had known, and that we were capable of giving Ethan everything that he needed from us. The pain of grieving for him had engulfed us for months, but then suddenly we were immersed in the sweet delight of holding our son and, for a moment at least, all the pain was forgotten.

We wrapped Ethan in the fleece baby blanket that my friend Anneke gave me when I first learned that I was pregnant, and we held him in our arms for his entire lifetime. We gave him a sponge bath; we marveled at his sweet round nose and the minute flickers of movement he made with his tongue; we wrapped his miniature fingers around our own. We laughed over his long feet and his tiny crisscrossed toes. We felt with our own fingertips the miraculous heartbeat that we had listened to for so many months. We kissed his soft face and breathed in deep the vanilla-and-peaches scent of him. Our friend Franklin came to take photos of our little family of three so that we could remember those moments forever. We tried to memorize everything – exactly how it felt to hold his delicate weight in our arms, the touch of his silky skin against our faces, the precise size and shape of the tiny half-moons of his fingernails, the round boniness of his knees under our cupped palms, the arc of his pale fine eyelashes. For two hours, we shared life in this world with Ethan.

It wasn’t that we didn’t see or notice what was broken about his body. It was that we could see, in spite of what was broken, that he was as beautiful of a child as God ever knit together. We could see that he was ours – that he had Eric’s brown hair, my blue eyes, the same funny little flat chin that Eric’s brother had at birth, and, as a friend had predicted back in our courtship days, that he was long and skinny, just like us. We could see that he was God’s most precious gift to us. As we held Ethan’s tiny body, our arms were overflowing with God’s abundant and good gift of new life.

Around 5:00, we noticed that Ethan’s arms and legs were beginning to grow cool. The doctor checked his heartbeat and confirmed that it had ceased. Our little boy was gone. Still, we had his beautiful body to hold, and hold him we did. Between the two of us, we held Ethan almost continuously for the next twenty hours. When my sister arrived that evening, we took more pictures and made ink prints and clay impressions of his feet. Our Rutba House friends came to bring us dinner and to meet Ethan. My heart was filled with gratitude to watch these friends daring to welcome and hold our little boy with the same tender joy that they would have given a whole and living child. That night, Eric pulled his pullout chair up next to my hospital bed and we slept with Ethan between us, as we had once dreamed we would do with our new baby in our big bed at home.

Letting go of Ethan was as heart-wrenching as welcoming him was joyful. A nurse came the very evening of his birth to tell us that she was going to get someone to come take him away. When we refused to let him go, she came back twice more to try again. Despite her insistence, we managed to hold on to Ethan all the way through the night and into the next afternoon, when Eric’s parents arrived. We spent hours marveling over his beautiful body and weeping for his too-short life. We told him the story of our love for him and of our dreams for his life. We told him over and over how very much he was loved.

And then it was time to say good-bye to our son. We rewrapped his blanket and snugged down his little cap one more time and we placed his tiny body in one of the hospital’s infant caskets. We gave him one last good-bye kiss. And then we let one of the staff carry him away. Afterwards, holding each other and sobbing in the empty hospital room, we felt like the world had ended, like the last light in the universe had just gone out. We felt like parents whose first-born and only child had just died.

Like every other new mother, I had to wait in a wheel-chair in the hospital lobby while Eric went to get our car from the garage. I’ve never felt more bereft than during the long minutes of waiting empty-armed to go home without my beautiful new-born Ethan.

The next two weeks were full of good-byes and the preparation for good-byes. I washed Ethan’s blanket and brought it back to the funeral home along with his teddy bear and the sleeper we had chosen for his burial. We framed some of Franklin’s black-and-white photos to display at Ethan’s funeral. We met with Spencer to finalize the service. My sister and I went shopping for flowers and came back with a car full of blue and white hydrangeas to decorate the front of the church. We scanned Ethan’s footprints so that they could be printed on the front of his funeral bulletin and tracked down a slide projector and screen so that we could include his photos in the service. As painful as these tasks were, they filled me with a solid sense of satisfaction. Each of them was something I could do – one of the last things I would ever be able to do – to take care of my little boy.

On Friday morning, Eric and I had one final hour to say good-bye to Ethan face-to-face. On Friday afternoon, our church and family and friends gathered to affirm with us that Ethan was and is, even in death, one of God’s own, made in God’s image. Together, we declared that we were returning Ethan to God’s keeping until the day when all of creation is reborn. On Monday and Tuesday, we made the long drive north to Vermont with Ethan’s little wooden casket, covered in his blankets and stuffed animals, in the backseat of our car. On Wednesday, Eric’s family gathered at a cemetery south of Rutland to help us bury our little boy. We scattered rose petals over his casket and prayed together the Lord’s Prayer and then we went away and let the cemetery workers cover him over with dirt. On Thursday, we planted mums to help fill the dark gash in the earth where we’d buried him. On Saturday morning, we sat cross-legged on the grass by his grave and told him good-bye one last time before we headed home.

Two hours down the road, we almost turned around and went back. I felt in the pit of my stomach like a mother who had left her baby behind, as if in some moment of extreme carelessness I had forgotten my newborn son sitting in his car seat in a parking lot, as if he might even now be crying and alone in a strange place, needing my love. But after months of nurturing his little life, there was nothing more Ethan needed from me and nothing more that I could do for him. The empty place in my body where he had lived for all those months yawned like a gaping crater.

That empty space at the heart of our lives, the sheltered space we had made for Ethan, continues to ache with his absence. There is not a moment of the day when I don’t feel the emptiness where he should be. Truthfully, I am not sure I could bear the pain of life without Ethan if it were not for the promise that he is safe in God’s keeping.

On the day of his diagnosis, Eric and I were stunned into wordlessness by the sorrowful certainty of the doctors who had so gently but definitively told us that there was nothing that they could do to save Ethan’s life and no hope of his survival past birth. As we drove home from the clinic, out of the emptiness, the words of Julian of Norwich came to me. All shall be well, she said, And all shall be well, and all manner of things shall be well. Later, when an anxious hospital employee tried to cheer us up just hours after Ethan’s death, Julian’s words provided a defense for me against the pressure to pretend that all was well. All was most decidedly not well, yet even as I held Ethan’s broken and lifeless body, Julian’s words called me back to the promise of the Christian prophets – that someday all things, even this terrible moment of anguish, will be made well. I think perhaps that the joy we felt in meeting Ethan, in loving him, was a glimpse of the fulfillment of that promise.

Later, Julian’s words wove their way through our good-byes to Ethan. Spencer quoted her in the sermon he wrote for Ethan’s funeral:

Though there are harms suffered that it seems to us it is impossible that it ever should come to a good end, yet our Good Lord has shown that “All shall be well, and all shall be well, and all manner of things shall be well”...For this is the Great Deed that our Lord shall do, in which Deed he shall save His word and He shall make all well that is not well. How it shall be done there is no creature beneath Christ that knoweth it, nor shall know it till it is done; but all shall be well, and all shall be well, and all manner of thing shall be well.

All does not feel well with us these days. Losing a child is a terrible wrenching dislocation, one that will never be fully healed in this lifetime. And yet, in the midst of this emptiness, I hang on to this promise that, in the moments of light and the days of darkness, in the fullness of joy and the emptiness of grief, in life and in death, “All shall be well, and all shall be well, and all manner of things shall be well.”

Photos of our beautiful boy

These photos were taken by Eric's friend, Franklin Golden (who is also a Now I Lay Me Down to Sleep photographer), during Ethan's two hours of life. They are the one of the most treasured gifts we've ever received...we hope they also bring joy to the many people who have loved Ethan.

Ethan's Burial

We will be holding a private burial service with family and a few friends at the East Clarendon Cemetery in Vermont on Wednesday, September 9th. At 3:30PM, following the service, there will be open calling hours at 310 Victoria Drive in Rutland, VT, and we invite all who wish to offer condolences to stop by. Thank you all for your prayers and comforting words.

Ethan's Funeral Information

Ethan's funeral will be this Friday, September 4 at 3:00 pm at St. John's Missionary Baptist Church (917 Onslow St, Durham), with a potluck meal in the church fellowship hall at 5:00. In lieu of flowers, please consider a memorial gift in Ethan's name to L'Arche USA (www.larcheusa.org) or YO:Durham (Year of Opportunity for Durham Teens www.yodurham.org). For either, click "Donate," then "In Memory of" and enter Ethan James.

Ethan's Birth

Ethan was born on Monday, August 31 at 3:00 pm and died peacefully in our arms at around 5:00 pm. We are so very grateful that we were able to meet him face-to-face. Although he never breathed, his heart was beating and his tiny tongue was moving. He had blue eyes and brown hair, a sweet little button nose, and beautiful hands and feet. He weighed 3 lbs, 5 ounces and was 16 inches long. It gave us great joy to hold him in our arms. It has been heartbreaking to let him go so soon, but we know that he is safe in God's care and that there are many grandparents and great-grandparents who have gone before him who have been waiting to meet him.

Eric and I came home from the hospital Tuesday afternoon and I'm recovering well. We are planning a trip to Vermont early next week. We plan to bury Ethan in Eric's hometown and then spend a few days with friends and family in New England before returning to Durham.

Ethan's funeral will be this Friday, September 4 at 3:00 pm at St. John's Missionary Baptist Church (917 Onslow St, Durham), with a potluck meal in the church fellowship hall at 5:00. In lieu of flowers, please consider a memorial gift in Ethan's name to L'Arche USA (www.larcheusa.org) or YO:Durham (Year of Opportunity for Durham Teens www.yodurham.org). For either, click "Donate," then "In Memory of" and enter Ethan James.

We are more grateful than words can express for the prayers and support of all those who love us and who have loved Ethan with us. What we have experienced over the past few months as so many people have celebrated Ethan's life and grieved for his death with us has been a foretaste of the communion of saints that we will all experience some day in Christ's presence.

Photos of our Ethan-bump

These lovely photos of Eric, me and our Ethan-bump were taken by Aimee Bickers of Pure Expressions Photography. Aimee is a volunteer with Now I Lay Me Down to Sleep, a non-profit foundation that provides professional maternity and birth photos to parents who are losing a child. We are so grateful to Aimee and Now I Lay Me Down to Sleep for this precious gift!

Why?

A few weeks ago we got the results of the last set of medical tests that might have been able to identify why Ethan’s body developed incorrectly. All of the test results are normal. In one sense, that’s a huge relief – we know now for sure that I do not have any of several possible blood clotting disorders (which might make any pregnancy life-threatening for me and for any other children we conceive). We know that I do not have lead poisoning. We know that Ethan has the normal number of chromosomes in his cells and so it is unlikely that his developmental problems stem from a genetic mistake that might be repeated in the body of a future brother or sister.

What we do not know is why this happened to him. It is much harder than I would have expected to live without an answer to that question. When we first learned about Ethan’s developmental problems, some of my first thoughts were about what I might have done to cause this terrible malformation of his little body: Did I fail to take prenatal vitamins faithfully enough in the months before his conception? Could I have somehow forgotten about the danger of Advil to unborn babies and taken one for a headache? Maybe the baths I took to relieve my first-trimester weariness were too hot for Ethan’s developing cells. Or maybe it was the caffeine or the sweeteners in the Diet Cokes that I found hard to give up. Was it because I gave in to my first trimester nausea and food aversions and stayed away from leafy green vegetables for a couple of months? Could it be that growing up in Hancock, which is built on top of abandoned copper mines and surrounded by industrial waste, could have poisoned my body?

My mind raced from possibility to possibility. I had a desperate instinctual need to find a reason why this happened, even if that meant living with the horrible weight of my own guilt. Eric and I had a painful argument about this soon after Ethan’s diagnosis. In the aftermath of the argument, we both realized that although undergoing tests for a medical explanation for Ethan’s problems might be helpful, placing blame for his problems would only tear us apart from each other at the moment we most needed each other. We both had to acknowledge that whatever happened to Ethan, it wasn’t because of a lack of intention to care for him well.

I have finally, in the past couple of weeks, come to an uneasy truce with the knowledge that I didn’t cause Ethan’s birth defect. Because it is so rare, there is very little medical research available about Ethan’s specific defect, but I was able to find several scientific articles that reassured me that in most cases no one knows why some babies develop with acrania. Certainly all the simple explanations, like maternal diet and vitamin intake, have been investigated and have been found to be insufficient explanations. One of our doctors, an expert in fetal abnormalities, thinks that the most likely explanation is that Ethan had a ‘vascular accident’ – that sometime early in his development one of the blood vessels in my body that supplies him with oxygen had a spasm or developed a clot that cut off the flow of blood to Ethan at a crucial point in time. There is no way to test this theory, but even having a possible explanation helps set my mind a bit more at ease. I suspect that this hypothesis is the closest we will ever get to an answer to the medical question ‘why?’ Since we found out about Ethan’s diagnosis, I’ve learned that having to live without a medical explanation is not unusual – in fact, with 70% of birth defects, no explanation is ever found.

As hard as it is, coming to terms with living without a medical explanation is not nearly as hard as wrestling with the theological question ‘why?’ Soon after Ethan’s diagnosis, Eric and I realized that the theological ‘why’ is one of the most potentially destructive questions we could pursue. Just as the medical ‘why’ holds the potential to destroy our relationship with each other, the theological ‘why’ contains the potential to destroy our sense of God’s care and presence when we need it most. Most of the possible answers to this question lead us to terrible, dark, dead ends: Maybe God planned this for us to teach us a lesson or to mold our character. Maybe God chose this for us because God can will whatever God wants to will, and as mere creatures, we have no right to protest. Maybe we are being punished for something we did wrong or for wanting a child too intensely. Maybe God is testing our faith and is waiting to see how we will respond. Or maybe God wants to show the world something through this situation – either through how we bear it or by miraculously healing Ethan at the last minute and proving all the doctors wrong.

All of these explanations leave us with a terrible, compassionless God, a God who would intentionally cause the malformation of an innocent child in order to prove something or teach us a lesson. They leave us with a God who stands remote from and unmoved by our grief and the painful reality that Ethan will have to suffer through death almost as soon as he is born. They leave us with a God who causes disease and death, rather than a God who is the overflowing source of healing and life. They leave us alone in our grief, the blind stooges of a powerful but uncaring manipulator.

Just as we’ve had to come to terms with the fact that we will almost certainly never know medically why this has happened to Ethan, Eric and I have also concluded that we will never know theologically why this happened. And in the midst of our unknowing, we have had to remind ourselves of what we do know about God and God’s care for us. What I have realized is that the theological question ‘why?’ is really a different way of asking ‘where is God in this experience?’ A week or two after Ethan’s diagnosis, during a walk around the Duke campus wall, my friend Liz asked me that very question. It was a hard question to answer, but a wise one for her to ask. After some reflection, I realized that God has been most present with me through the community of God’s people who have surrounded us with love and support and have joined us in our grief. The tears of the body of Christ have shown me where God is in this situation – God is with us and God is also weeping over the pain of Ethan’s too-short life. If God made Ethan as a reflection of God’s own image, then surely God’s grief over his inevitable death is even greater than ours. If God breathed life into Ethan’s little body, then surely God had even bigger and better dreams for him than we did. If God knit Ethan together in my womb, then certainly God’s heart is also broken over this little unfinished body.

The idea that God’s providence or purposes are somehow at work behind tragedies like Ethan’s death is appealing to many people. I think this might be because, in our moments of powerlessness, this thought reassures us that God is in complete control, even if we cannot comprehend what God is doing in our lives. But I’m not sure it’s an honest conclusion. Surely God is at work in our world and in our lives, and surely the promise of the resurrection is that one day the power of death will be completely swallowed up by the God who is the source of all life. But the moment in which we live is somewhere between the promise and its fulfillment. The moment in which we live requires both stark honesty about the realities of our broken world and radical faith in the coming vision of wholeness that God has promised. The moment in which we live requires us to acknowledge that there is much that remains terribly broken about our world, even as we wait in faith for the day when all will be made whole.

One of the books that has been most helpful to me in the past couple of months is Hope Deferred: Heart-Healing Reflections on Reproductive Loss (2005, The Pilgrim Press, edited by Nadine Pence Frantz and Mary T. Stimming). It was written by five women theologians who discovered, during a conversation in the women’s restroom at a theological conference, that they had all experienced the loss of a child through miscarriage and that several of them had suffered through long-term infertility. The book is the fruit of their long wrestling with the painful theological questions brought about by these experiences. In one of the essays, Nadine Pence Frantz addresses the question ‘why?’ in the aftermath of the death of her only biological child, Jacob, conceived after seventeen years of infertility and miscarried after twenty weeks of pregnancy. In response to friends who tried to reassure her that her son’s death was somehow part of God’s plan, Frantz concluded that they misunderstood where God was present in her experience. Rather than seeing God as the cause of her son’s death, Frantz writes, “Maybe the struggle with death is an ongoing struggle in which God is also a participant, rather than a distant onlooker.” The death of a child, either born or unborn, is not something God chooses for any of us. Rather, it’s a result of the ongoing travail of all creation, as we wait for the day when the powers of death will be finally extinguished by God’s life-giving love. And in this time of waiting, we are not alone as we weep, but are enfolded in the attending, abiding, creating presence of the God who will one-day destroy death completely.

I have found a lot of comfort recently in a vision described in Isaiah 65. It was originally spoken as a promise from God about the restoration of Jerusalem, and of God’s people, given to those who returned to their holy city following the long years of exile and found their city and their society in ruins. Christians later heard in this vision a promise for our world when it is made whole by Christ at the end of all things. It’s a vision of creation recreated and whole, a vision we long for and wait for and pray to see soon.

See, I will create new heavens and a new earth.
The former things will not be remembered, nor will they come to mind.
But be glad and rejoice forever in what I will create,
for I will create Jerusalem to be a delight and its people to be a joy.
I will rejoice over Jerusalem, and take delight in my people;
the sound of weeping and of crying will be heard in it no more.
Never again will there be in it infants who live but a few days,
or older people who do not live out their years…
For as the days of a tree so will be the days of my people;
my chosen ones will long enjoy the work of their hands.
They will not labor in vain, nor will they bear children doomed to misfortune.

This vision of God’s longing for our world not only reassures me that our world will one day be made new, it also reassures me that Ethan’s suffering, and the suffering of all the other children who die before their time, is not what God intends for them or for our world. God’s vision of peace and wholeness declares that one day there will be no more children stolen away from us by death.

I know that if I am open and listen, there are things I will learn through this experience. I know that the heart-rending experience of loving and losing Ethan will shape me in life-changing ways. At the very least, going through this dark valley has the potential to make me a more wise and compassionate pastor and friend. But I don’t believe for a minute that God caused this to happen or that this was in God’s plan for Ethan’s life. I don’t believe God wills babies to be born with birth defects any more so than God wills tsunamis or genocides or mass starvation. I believe God hovers like a heartbroken mother, tending to a dying child, among the wreckage of our world. I believe God longs with a longing far more intense than what I feel for Ethan, for the healing and wholeness of all the broken and dying life in our world. I believe God is actively fighting against the powers of death and destruction in our world, and will continue to fight against them until the day that they are no more. And I believe that God is grieving with us as we wait for that day when all of creation will be completely freed from the strangle-hold of death.