Sunday, December 27, 2009

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.”


Blogger eb said...

Truly you and Eric have shown unbelievable courage in fully facing the reality of Ethan's condition. The power of knowing God shows through you, as it is clear that your ability to fully experience Ethan's life and death comes from your relationship with Him. I am not surprised that it is harder now, when there is little to do, than it was during pregnancy and even during the funeral. We continue to pray for you, that God would be with you and comfort you and that you will someday see joy greater than the depths of this sorrow. Your gift in writing about what you have gone through is a blessing to all who seek to understand God's presence in this broken and difficult world.

5:51 PM  
Blogger Margot said...

Bless you, precious sister.

Your gift of courageous transparency ministers around the block & beyond.

6:25 AM  
Blogger Laura said...

Amazing, anointed words. I think of your precious family often. Asking God to hold you in the midst of the ache. You love so well...much grace to you sweet Danya.


6:34 PM  
Blogger Nancynurse927 said...

Thank you for taking the time to share. I am a nurse and you help me minister to my patients. nancy

3:41 PM  
Anonymous Katie said...

You don't know me, but i wanted to thank you for putting words to your experience. A friend of mine is expecting a baby not expected to live - that is how I found your blog.

My face is covered in tears now, as I read your story with my 2-month-old napping beside me. I was especially touched by your mention of Julian of Norwich. My daughter's name is Naomi Julian, chosen because I too am so nourished by the faith of Julian of Norwich in the tenderness of our God to ultimately make all things well.

I have very little experience with situations worthy of grief as deep as you must be going through. But I guess I just want to thank you for the perspective on my own life, and on my perspective on my daughter's life, that your story gives. The picture is so much bigger than the right-now, and she is not "mine to keep" - she is His. May God bless you today.

6:59 PM  

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