Dear Friends, December 3, 2009
Advent has begun again, which means the season of “waiting” has begun. My experience over the last 6 weeks has had me asking if there ever is a beginning and an end to “waiting.” Or is it something that we are more conscious of some times more than others? On Sunday, technically the first day of this season, I thought my waiting was over. I went to the hospital with signs of early labor. We have in many ways been expecting this. Six weeks ago, we were told we would never make it this far. Six weeks ago, we were advised not to risk waiting and to say our goodbyes right then. We packed a hospital bag and prepared a liturgy to mark a stillbirth. Every week since then, we have still been preparing these goodbyes. In many ways, David and I understood that to say goodbye then was a good and moral choice as good and moral as the decision to wait and let things run its course. We believe that God is present in all situations—life and death, salvation and suffering. But something led us to keep going. For me, it was my calling as a pastor and how it prepared me for that moment. I thought of each individual in the pew. What would I do if it were one of you faced with near unbeatable odds? Well, I’d sit, wait, and be present. What else could I do? In our training, David and I spent a summer together as chaplains. During this summer, we were called to sit at the deathbeds of strangers to be there as they took their last breath, especially if that was too hard for their families. In those rooms and in the acting out of sacred presence, we slowly became aware of the flow of life into death and its rhythm as essential to our entire being in God.
In our waiting, we have wrestled with what it means to have our life in God. Is there some essential quality that makes this apparent or as it is our temptation to ask during hard times, are there circumstances that suggest its absence? Our doctors have been mirrors for these questions as they too discussed “quality of life” with us. Through these conversations and in talking to close friends and family, we have stumbled upon what we are affirming for the new life begotten in us, often through what we could not fully affirm.
My first doctor was an adept and respected obstetrician who offers many healthy women the perfect birthing experience as he had for me with my son, James. While leaving his office I was reeling from the recommendation as a young mother of one to essentially cut my losses and try again, I passed by his collection of black and white photographs or celebrity mothers and daughters, many nude or idyllic in the style of famous photographer, Annie Leibovitz: Blythe and Gwyneth, Demi and Rumer, Whoopi and her pregnant daughter. As much as I desire the perfection they represent, a perfect life was never the promise I could believe in or make to another living being. If anything, it was in the imperfect that I had found promise in life.
We found a new doctor who did not make any promise of miracles but committed to wait and see things through with us. He led us to two other specialists with interesting paths and points of view. The neonatologist had witnessed miracles in her intensive care units but she had also had three miraculous pregnancies. The first son came back from a sudden and near fatal heart failure in his first day of life. The second contracted a rare virus at 7 weeks gestation, which showed brain lesions on all sonograms indicating he would not have cognitive or physical capacity. The third tested positive for Down syndrome. All were born and continue after over fifteen years to be healthy with no traces of their initial diagnoses. In her NICU, she started a separate hospice wing for families needing to say goodbye with dignity. Her hospital seeks to offer parents the option to see difficult pregnancies through to difficult ends. She told us we would have a “peace” with our decision because we had allowed God’s will into it. As inclined to accept her comfort as we were, I could not agree as she explained how in life, there are those who are at peace because God’s will is in their decisions and others who she proposed are depressed because they do not. In the world around me, in the choices we faced, I did not see the either/or she perhaps unintentionally set up.
In every step, we have seen God’s will. In every life shared with me, I witness God’s will whether or not we allow it. God is continually present and transforming each moment of our lives within and outside of the choices we are making. God will not be left outside.
Finally, we saw a specialist that had actually seen cases like ours, though only a handful. The specialist we saw had a store of other views. Having seen more cases like ours than any other doctor in the city, perhaps country, he presented all the medical information and ethical considerations in a calm and considerate way. He emphasized the importance of our perspective in all this. He even traced how different traditions viewed life and its beginning. Because it is highly probable that our child will not be able to breathe on her own, the account of how Orthodox Judaism considers life to begin with the first breath was both beautiful and frightening. God breathed life into matter and made Adam. Whereas a Catholic, like our neonatologist, believed it began at conception. Both ideas filled me with awe and fear. I realized “When?” was not the question for me. Somehow, along the way, life grew and I became aware that I had been entrusted with that life. The best and most merciful way to honor life would always be a question. My guiding question was not a matter of “when” but “how?”
Then he revealed something closer to his vest. He said that psychological studies had documented how unreliable accounts of “quality of life” are in cases where prenatal risks did result in disabilities. Those with disabilities always reported the highest quality of life, their parents reported good estimates but with regrets and the physicians, which he termed, “the most objective,” reported the lowest quality of life for the patient. There was something about this discussion that made me feel “quality of life” was not an objective measurement to be defined by medicine alone. I felt myself agreeing with the right to our first person account of the quality of our lives.
This led me back to the sense I was having about how to answer how our life begins, is sustained and “ends.” My answer in that moment, which I believe to be consistent with my answers in most moments when I am pushed, is expressed in the Ephesians passage I have been meditating on for 6 weeks. “You are rooted and grounded in God.” This is my mantra this week as we cross a precarious threshold staring down the corridor to viability, morbidity (another ill-chosen medical term) and mortality. In God, we just are. It is not about when we become nor when we cease to be. It is not about if we breathe or if we cannot breathe. It’s not about if we choose God’s will or it is chosen for us. We are rooted and grounded in God. This is the sacred presence God offers my child. To root and to ground is the way David and I have felt called to be its parents. As we sink deeper and wait longer, we realize, this child roots our feet on the path and grounds our hearts further in faith. And as you, our congregations, patiently wait alongside your pastors, giving us space for lightness and food for nourishment, you ground us too.
I pray in this season of Advent, that you all feel rooted and grounded in love.
Blessings,
Beth
