Monday, June 22, 2009

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.

Thursday, June 11, 2009

Ethan James

Four weeks ago, at our twenty-week ultrasound appointment, Eric and I learned that the baby that we are expecting in September has a fatal birth defect. Sometime very early in his development something went drastically wrong. His most serious problem is that his skull never formed– the whole top and back part of it simply does not exist (the technical term for this is acrania and it’s very similar to anencephaly). At first, it seemed likely that our baby had one more chromosome than a normal baby and that the extra genetic material caused the problems with his development. But this week we learned that his chromosomes are normal. Our doctor is currently investigating whether I might have a blood clotting disorder that could have caused a clot to form and cut off the flow of blood to him at a crucial point in his development. If we learn that that is not the case, then we will probably never find a medical answer to why he developed this way. Babies with acrania have a fairly good chance at living to full term and even some chance of being born alive, but they usually don’t live more than a few days after birth. Our neonatologist indicated that she expects that, if he makes it through birth, our little one will live for just a few minutes or hours.

The day of our ultrasound has become a dividing line for us – there is everything before and everything after. We are living in ‘after’ time now, and nothing will ever be the same. We were so excited to be having this baby. The day I took a pregnancy test and it produced that astonishing blue plus sign, Eric took silly arms-length photos of the two of us, our faces smushed together, grinning and holding up the positive pee-stick. I love those pictures. We had been waiting and praying for a child for almost a year and I had given up hope of conceiving without some kind of medical intervention. And then, when we were least expecting it, the pregnancy test was positive. We were so certain that it couldn’t be true that I retested again the next morning and, still in shock, Eric called an older, wiser friend to see if he had ever heard of a false positive pregnancy test. Our friend whooped with delight over the phone and assured us that if the test was positive, I was really pregnant.

I made Eric hold out until we hit the twelfth week of pregnancy before I let him put our goofy, happy positive pregnancy test pictures up on his Facebook page and announce his upcoming “major career change” (he was planning to be the primary caregiver for the baby for the first few years). Once we made it past week twelve, when the most serious danger of miscarriage was over, I breathed a huge sigh of relief and let myself settle in to the reality that we really were going to have this baby. At his eight week ultrasound he looked so much like a little sea-creature that we started calling him “Flippery.” At every check-up, his heart-beat was strong. At eighteen weeks, right on schedule, I felt him move. We started collecting donations of baby gear from friends and I made lists of all the things we still needed to buy. I planned my maternity leave and we started thinking about how to turn our guest room into a baby room. We signed up for BabyCenter email newsletters, tried out various name possibilities, and began to think about where our son or daughter might go to elementary school. Each week Eric posted updates on Facebook about which fruit or vegetable our little one was currently closest to in size. Eric’s mom reported that a flurry of knitting and crocheting was underway in Vermont in preparation for the first Getty grandchild. I compared pregnancy symptoms with my friends who are moms, read the pregnancy books my sister had sent me cover-to-cover, signed us up for birthing classes, and started collecting maternity clothes. In every part of our life, we began making room to welcome this little life.

On the morning of our ultrasound, Eric woke up sick. He’d had his wisdom teeth pulled two days before and the combination of hunger, bleeding, and pain medication left him so nauseous and light-headed that we both thought he was going to have to stay home in bed. I was so disappointed that he would miss being with me when I learned the baby’s gender and that he would miss seeing what our baby looked like all these weeks later. But a few minutes before I left, he decided that he felt well enough to come too. I knew that the reason that pregnant women routinely get ultrasounds is to check for problems and not for the sake of curious parents who want to know if they’re having a boy or a girl. But everything had gone so smoothly with our pregnancy so far that I didn’t really give a second thought to the possibility that we might learn anything more momentous about our baby that morning than its gender. My dad said that if my mom were still living, she would have predicted that we were having a boy because my morning sickness wasn’t very bad. And I thought we were having a girl, mostly because it was harder for me to imagine how to parent a boy. When the ultrasound technician got me settled on the table, she asked if we wanted to know the gender. “Yes!” we both said. The first image that appeared on the screen when she touched the transducer to my belly was the bottoms of two little feet framing the clearly unmistakable evidence that this baby was a boy.

We were both so delighted to see our baby. The ultrasound tech explained which body parts she was showing us as she clicked away with her mouse, labeling and measuring the images. As time went on, she got more and more quiet, but I didn’t think much about it. Eric and I were still grinning at each other and marveling over the fact that our little ‘sea creature’ had grown into a baby and that we were having a boy. At the end of the exam the technician said that she was having trouble finding the baby’s cranium and wanted the doctor to come in and look. That was the first clue we had that something might be wrong. The doctor looked at some images of our baby for just a minute and then turned to us and said, “I know this is supposed to be a happy day. I’m so sorry to have to tell you this, but there is a problem with your baby. I can’t find his cranium.” She made us an emergency appointment at the Duke maternal-fetal health clinic for that afternoon and told us that we would be seeing two ultrasound technicians and a genetic counselor. We knew that the presence of a genetic counselor meant that our baby’s problem was probably fatal.

The three hours before our next appointment were incredibly long. Mostly we held each other and sobbed. Spencer, our pastor, came to pray with us. We called a few friends to ask them to pray for us too, but decided not to call most of our friends and family until we knew for sure what was wrong. At the Duke maternal-fetal health clinic, we had an advanced ultrasound that took a whole hour. Many of the images appeared on the screen in 3-D and with almost photographic clarity. I could see from the images that something was very wrong. The baby’s face didn’t look right – it looked as if someone had sculpted a perfect baby face out of clay and then dragged a wet hand across it – it was clearly a face, but with the features blurred together. And the back of his head was missing. Also, there were strange little spiky things on each side of the center of the top of his back where his vertebrae should have been. I cried silently throughout the ultrasound, but even so I couldn’t help feeling a stab of joy at seeing him move. Through much of the exam, he looked like he was energetically practicing crawling – all four arms and legs were moving exuberantly and all at once. A couple of times I could both see and feel him move at the same moment. By the end of the ultrasound, I felt like I knew him better than ever – I had seen every part of his little body in detail. After another wait, the genetic counselor and a doctor came to explain the results of the ultrasound to us. This time there was no doubt – our baby simply could not live outside my womb and might be stillborn at any time. The doctor explained that, in addition to his missing cranium, he was missing a kidney and an artery in his umbilical cord. Throughout the exam he had held his hands in a clenched position, which is often an indicator of the kind of brain damage that results from a chromosomal abnormality. Before we left, the doctor drew some amniotic fluid so that she could confirm that this was the case.

That afternoon, we named our son. His name is Ethan James. We named him because, just an hour before, while our faces were still red and swollen and sticky with tears, we had to decide whether we would end his life early or whether I would continue to carry him until he dies. Eric and I have both spent years as theology students and could easily write papers (and probably a book) about the Christian ethics of this decision, but in the moment there was no need for complex moral reasoning. Only one thing mattered: We love this child. We love him with a love that is far fiercer and stronger than we imagined it could be. All this making room in our lives and getting ready for his arrival has, without our realizing it, made us into parents. We believe that God has entrusted this little life into our care. We have no power to change anything about his development or diagnosis or the length of his life, but we choose to love him with our whole hearts and to provide for him for as long as God gives him life. We choose to parent him to the best of our ability, even if the time we have with him is achingly short.

One thing I have learned from my friends who are parents is that parenting always brings some anguish. It’s the anguish that comes from loving an imperfect child in an imperfect world and of knowing that you can’t protect him completely. This pain that Eric and I are immersed in – the pain of loving a child who is going to die – is the anguish of our love for Ethan. We’ll never stay up all night with Ethan while he cries inconsolably and inexplicably or go through the terrible twos with him. We’ll never cry on his first day of school. We’ll never worry about what he’s doing at his friends’ houses when he’s a pre-teen or rush him to the ER after an accident with a bike. We’ll never comfort him when he’s been rejected by a friend or try to teach him not to be cruel to other kids. We’ll never sweat through his first attempts at driving or dating or have to endure hearing him shout that he hates us. We’ll never have to drive him to college and leave him there. But our love for him is no less, nor is our anguish. Most days, we find ourselves on a wild teeter-totter of emotions. We are, by turns, filled with joy at Ethan’s continued kicks and at our silly games with him (Eric loves to give him kisses and raspberries through my tummy) and swept up by waves of grief and astonishment at all that we are losing and the reality that, even as we are planning his birth, we need to plan for Ethan’s death.

We have been more grateful in these past few weeks for the gift of community than ever before in our lives. This grief would be unbearable if we had to bear it alone, but we have been surrounded and upheld by the love of friends who are heartbroken with us and who are praying for us and for Ethan. One of my co-workers commented recently that although Ethan won’t live long, he is incredibly loved. And this is far truer than I ever expected – so many people who love us have also been eagerly anticipating Ethan’s life and already growing into love for him, just as we have been. We are so grateful for friends and family who will cry with us and keep us company in our grief and who will also treasure these few precious months of our son’s life. We are so grateful that we are not alone in our anguish of love for Ethan.