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.

Things I love about being Ethan's mom

Ethan's little lamb modeling booties and the smallest of the hats made for him by his Grandma Getty (the hat is tiny just in case he's tiny when he's born)

On the day that we received Ethan’s diagnosis, the genetic counselor we met with assured us that our medical team would fully support our decision, whether we chose to end Ethan’s life early or to continue to carry him until his natural death. She explained that if we decided to continue his life we would have access to a hospice program designed just for babies, including those who are not yet born. The hospice team, she told us, would help us think about how to enjoy the time we have with our baby and make memories of him while he is still with us.

It felt strange to think about trying to make memories of a baby who was not yet born – and who was, on that afternoon, not even yet named. Just two weeks before that appointment I had begun to feel Ethan’s fluttery movements for the first time, and it was only that morning that we had learned that he was a boy. For most of the pregnancy, my experience of him had come only through my symptoms of nausea and exhaustion and through the sound of his heartbeat at our monthly checkups. I had already planned to write down some of my pregnancy experiences so that I could share them with our baby when he was older, but it was hard to imagine how Eric and I might go about forming memories of our unborn son that would last for years to come and console us when he was gone. And it was even harder to imagine, as we tried to absorb the terrible news of his diagnosis, how we might still find joy in his brief life.

But what we have found over the past few weeks is that, amidst the grief, there is a tremendous amount of joy in being Ethan’s parents. Knowing that his life will be short has made Eric and I much more attuned and attentive to Ethan. We have discovered that his in utero antics can still make us laugh out loud and that we are as awe-struck at the miracle of his life as any other new parents. Our days of waiting for Ethan have been filled with both grief and joy, and I wouldn’t trade the joy of becoming Ethan’s mom even if I could be free of the pain that will come with losing him. These are some of my favorite things about being Ethan’s mom:

Ethan loves jelly beans! Shortly after we received Ethan’s diagnosis, he had several days of relative inactivity. I felt very anxious about his well-being because he has a higher than normal chance of dying before birth. But I soon discovered that whenever I feel anxious, I only need to eat a handful of jelly beans from my co-worker’s desktop candy bowl. Just minutes later, Ethan goes wild with kicking, letting me know that he is still alive and well! (I’m guessing that he has inherited my sweet-tooth!)

Ethan gives us an excuse to play with cute stuffed animals and other fun baby things. Eric’s mom sent us a care package at Easter with chocolate bunnies for the grown-ups and an adorable stuffed lamb for her much-anticipated grandchild (the lamb says “baa…BAAA…baa…BAAA” when you squeeze it!). It was one of the first gifts we received for Ethan and was a wonderful affirmation that this child was loved by his grandparents from the first days of his life. We’re not sure how much Ethan can hear, but just in case, the lamb often takes a frolicking lap around my baby-bump. The lamb has now been joined by a little lady bug - and I’m sure that there will be more stuffed creatures that come to live with Ethan in the days to come. Recently, Ethan’s Aunt Holly sent us her favorite childhood book. We read it to him often – and even if he can’t hear our voices, I know he can feel my belly laughs at the silly animals in the illustrations.

Ethan continues to surprise us with his strength. Ethan often wakes up between five and seven in the morning to get in some of his most intense activity of the day. Eric and I have fun speculating about exactly what he is doing in there…Practicing his soccer kick? Jumping jacks? Using my bladder as a trampoline? Maybe calisthenics to prepare to be a state-champion hurdler like his dad and his Grandpa Olson? One morning I was convinced he was doing kick-boxing! I am amazed that a child with such severe developmental problems has not only made it this far in life, but has continued to grow and get stronger. I think that he must be a very tenacious and life-loving little boy.

Ethan’s heart makes beautiful music. Our Rutba House friends put their heads together to think about how they could help us enjoy Ethan while he is alive, and decided to rent us a fetal Doppler so that we can listen to his heartbeat at home. There is no more beautiful sound to me than the “wow…wow…wow” of Ethan’s heart. The Doppler is from a company called “Stork Radio,” so we call our listening sessions “Ethan Radio” – and we listen at bedtime several nights a week. No matter how sad we feel, the steady sound of Ethan’s heart always makes us smile. Eric (ever the musician!) has discovered that my baby-and-fluid-filled stomach makes a wonderful drum. Keeping time with Ethan’s heart, he often improvises some West African rhythms on my belly!

Ethan’s life has strengthened our ties with the people who love us. Jean Vanier, the founder of the L’Arche communities for people with disabilities, talks about how the members who suffer the most or who are the most in need of care are at the heart of L’Arche communities. Community forms around them because they are vulnerable and need the care of others – and this vulnerability and need is the gift that they give to their community. Something similar has happened with Ethan – we have been surrounded and upheld by the love and prayers of dozens and dozens of people in a way I’ve never experienced before. We’ve heard from many old friends and several people we’ve never even met have written to say that they are praying for us. Somehow this fragile little life has drawn together people who love us and know that we, and Ethan, need their care.

Ethan continues to make us into parents. On Mother’s Day, we were still three days from finding out about Ethan’s diagnosis and innocently confident that there would be many more Mother’s Days with Ethan to come. Several friends gave me cards and when our church handed out roses to all the moms, I was delighted to discover that I was included. Although Father’s Day was much more bittersweet, I wanted to do something special for Eric to celebrate that he is, and always will be, Ethan’s dad. Ever since we found out we were expecting, Eric had been looking forward to the day that our child would be old enough for a trip to the North Carolina Museum of Life and Science. For Father’s Day, we decided to take Ethan there. It was wonderful to have something fun to do with and for Ethan in the midst of all the sad things we’ve had to do to prepare for his birth. We spent a long time in the insect room, where Eric was fascinated with watching all the bugs get fed. I’m sure Ethan would have been equally enthralled in a few years. But it isn’t just these celebrations that have made us parents. It’s that Ethan needs us to continue to love and nurture him every day. Some days I think we’re crazy to think of ourselves as parents. But his little life – the steady “wow…wow…wow” of his heart and his insistent kicks – continue to call us to become more than who we were before he existed and to do all that we can to provide for and protect him.

Praying for a miracle

Over the past few weeks, as Eric and I have shared our sad news about Ethan’s short life expectancy with our friends and acquaintances, several people have responded by saying that they will be praying for a miracle. We are not particular about who prays for us or how they pray – we are deeply grateful to be upheld in prayer by our entire extended community and have sensed over the past few weeks that we are receiving strength we didn’t think we’d have because of these many prayers. (Eric commented recently that he has friends of all three Abrahamic faiths—Christians, Muslims, and Jews—praying for our son). But the choice of some of our friends to pray for a miracle has made me think hard about what and how I pray for Ethan.

I am not praying for a miracle. At first, I wondered if this was because I lack faith. It is true that I have a hard time having confidence that God will supernaturally heal those I love when they are deathly ill. Maybe this is because I lived through my mom’s excruciating death from cancer, despite many prayers for her healing. And probably it is also because I am culturally a rational westerner and am more likely to put my confidence in the technology of medicine than in the healing power of God. My experience at Fuller Seminary, where many of my non-western classmates believed in – and had experienced– supernatural physical healing helped me to realize how much my culture shapes my ability to see and experience God in similar ways.

But I think something else is happening in my heart when I pray for Ethan as well. The truth is, I saw Ethan’s ultrasound photos. I saw with my own eyes that this little boy doesn’t have a cranium – the whole top and back of his head are simply missing. On the cross-section scan of his abdomen, I saw the little white oval that is a kidney and the grey empty space on the other side where his second kidney should be, but isn’t. I know that the doctors weren’t mistaken about what they saw because I saw it too. And I know enough about the biology of human development to know that we are long past the stage of pregnancy when these structures are supposed to form, and that there is no hope that they will spontaneously and naturally form now. I know, in a way that these friends cannot, that it would take a miracle – the ex nihilo, flesh-and-bone-creating kind of miracle – for Ethan to be made whole.

I desperately want Ethan to be born whole. I would give up one of my own arms or legs if it meant that Ethan’s skull could close over and his brain form normally. There is nothing I want more in life than to raise this little boy and to have him outlive me. I want to hold his newborn children in my arms when I am old and grey-haired and know that they will live on long after I am gone. But I am not praying for a miracle because I am not emotionally capable of praying for healing while simultaneously preparing for Ethan’s death. I have to choose one or the other - the two possibilities are simply too much for me to hold together in my heart at any one time. Eric and I only have this one opportunity, now, in these days of waiting, to parent Ethan well. We don’t want to waste this precious opportunity by denying the reality that his life will be very short or by failing to acknowledge that what he needs most from us is our loving preparation to care for him in his dying.

Over the past few weeks, Eric and I have begun these strange and unexpected tasks of parenting. With our hospice team, we’ve started working on a written plan for Ethan’s medical care so that he will be protected from pain and surrounded with love as much as possible during the few moments of his life. I have been searching for the right scripture texts and liturgy for his funeral service. A few nights ago, between coming home from work and grocery shopping, we stopped by a baby cemetery. As we walked among the tiny grave plots with their decorations of sippy cups, baby rattles, pinwheels and matchbox cars, we tried to imagine what it would feel like to bury Ethan there. We have offered his car seat and stroller to friends who are newly expecting, and have been shopping instead for a wooden infant casket. Although I haven’t found the strength yet to buy anything, I’ve begun to think about the kind of clothes Ethan will need for his birth and burial. All the while, he kicks away inside of my womb, letting us know that he is still full of life and energy. These are not the tasks I expected to carry out during pregnancy –and they certainly aren’t the tasks that appear on the monthly ‘to do’ lists in my pregnancy books-- but they are what Ethan needs from us now.

As I go about these tasks, I have not been praying for the miracle of his healing, but I have been taking great comfort in the miracle that is already assured – the miracle that Ethan’s life will not end with his death, but will be joined to the eternal life of the God who made him and gave him to us. Sometimes this promise is offered to people who are grieving as if it is somehow supposed to take away the pain of burying a loved one – and as far as I can tell, it doesn’t. My body is still going to ache for him when we come home from the hospital without him. Years from now I will still feel the pain of his absence and wonder about the person he would have grown up to be. But it does give me great comfort to know that there is something about his life – the life that God put in him – that is not ephemeral and fragile like his body, but that will last forever. In this way, Ethan is no different from any of us. Our bodies are frail and fallible too, and they will all die sooner or later, but we too have the promise of resurrection into life that is not constrained by our frailty and that comes from the One who breathed life into all creation.

I am also incredibly comforted by the promise that Ethan will indeed be made whole in the resurrection. When I was in college, I spent my summers with a group of kids and adults with disabilities at a wonderful little place called Camp Hope. One of the favorite songs of every group of campers was “I Am Going to See the King:”

No more crying there, I am going to see the King;
No more crying there, I am going to see the King;
No more crying there, I am going to see the King;
Alleluia, alleluia, I am going to see the King!

The kids never got tired of making up their own verses – “No more wheelchairs there!” “No more crutches there!” “No more braces there!” “No more helmets there!” “No more doctors there!” “No more needles there!” Their joy at the prospect of being physically whole was uncontained. And I think that this was not only because of the pain that all of those objects and experiences represented, but also because of how our culture treats people with disabilities. A child whose body or mind is not fully functional is treated day in and day out as if they are less valuable and less important than other children. Often they are treated as despicable and shameful. Sometimes they are abandoned by their families. What the Camp Hope campers were saying when they sang this song is not just that their physical pain and limitations will one day be gone, but that they are eagerly anticipating the day when they will be recognized and valued by the whole community of God’s people as God’s wonderful creations. Our culture says that a child without a whole brain, who may well be blind and deaf at birth, and who will likely be incapable of responding to those who love him – a child like Ethan - is scarcely human and is certainly not a life worth celebrating. But the promise of the resurrection is that this child will take his place in the great and joyful dance of the community of God’s beloved ones and all of God’s restored creation. This child will be made whole, not just in body and mind, but will be embraced and celebrated as a whole and holy creation of God.

I am praying for Ethan. I am praying for God’s peace to surround him in his living and his dying. I am praying that he won’t suffer pain in his moments of birth or death. I am praying that he knows, in whatever ways unborn babies can know, that he is our beloved and deeply wanted child. I am praying that Eric and I will have the opportunity to hold him and tell him how much we love him while he is still alive. And I am praying with deep gratitude for the miracle that Ethan’s life will not end with his death, but that he will be embraced in the love-filled life of the Trinity and join the communion of all of God’s people who have gone before him.