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.