Choosing Grace

This past year has been the busiest of my life with a new marriage, pregnancy, full-time graduate school, multiple moves, homeschooling a new stepson, and approaching the date of finally getting Cece’s service dog. It has been hard to find time to write this calendar year, hard to process all of the changes that seem to be happening all at once. Simultaneously, there has been so much grace, so much that is given, so much that I want to give in return, that I feel as though cascades of divine mercy and benevolence are being poured out on me, so staggering in their weight and wonder that I can barely catch my breath. After so much loss and so much grief, there is now so much given, and because it is being given, so much too is being asked.

For the past month, we lived temporarily at my mother’s bay house, a place where Cece and I have spent a great deal of time since her birth. As an infant, I coped with her heart-rending cries by walking out to the door and down to the beach to pace the waves slowly, let her feel the breeze coming off the Chesapeake Bay and listen to the calls of ospreys and bald eagles. Last summer, we sat in dazzling pools of light in the inlet outlet, watching crabs scuttle mysteriously past and exploring handfuls of stone, slate, and sand, playing with texture, breathing in the brackish horizon mingled with the scent of towering pines. This summer, we spent most days at the beach looking for shark teeth, fording fallen trees, and discreetly keeping pace with fishing herons, stalking before us with their strange, awkward grace.

Cece’s confidence and independence has grown astoundingly in the past year, largely due to the implicit faith my husband has in her ability to live and play as though her sight equals that of other three year-olds. Where once she would have stood or sat frozen in the shallows, crying for my mediation, now she plunges headlong into the waves–like her big sister before her–dragging my husband with her so she can hold his hands and jump, jump, jump! She then pulls herself up, anchored by his weight, to kick her legs in swift repetition, grinning breathlessly and chanting, “Kicking baby legs!” She can sit for hours at the edge of shore, swaying with the rhythm of the waves, giggling in delight when the bigger waves pull her to and fro.

I have said it before: Cecilia doesn’t know she is blind. She doesn’t know she has cystic kidney disease. She doesn’t know that her big sister died at the age of two. She doesn’t know that her biological father abandoned her. What Cece knows is the touch of my fingers down the silken skin of her cheek, my lips pressed to her honey-brown hair. She knows the feel of the calloused thumb of her new father as she holds his hand in prayer before dinner every night. She knows the voice of her new big brother, the sound of the waves as she walks, toddling, towards the shore, the sprint and leap of Vivaldi’s “Spring Primavera.” She knows the taste of avocado, the feel of the pages of her books between her fingers, the weight of the piano keys in her new grandparents’ sitting room. Cecilia sings and dances and cries and complains as though she is three-years-old . . . precisely because she is three-years-old, and although her world is growing bigger, it is not yet growing darker.

I am in the process of attempting my second masters degree in Biotechnology and Ethics at the Pontifical John Paul II Institute for Studies on Marriage and Family in Washington, D.C. Despite the manifold challenges of returning to school fulltime as a commuting, pregnant mom and wife, I am pursuing this degree because my school offers classes with titles like, “Suffering, Death, and the Biotechnical Imperative.” My school explores the difficult questions of beginning and end-of-life issues, including issues as personal to me as brain death and organ transplantation. It asks the problematic questions of where medicine and medical technology should have its limits, of what the meaning of human suffering and death actually is, of what is happening to our relationships with God, others, and the world when our births and deaths are mediated first and foremost by the impersonal face of modern medicine.

The questions I find myself asking along the way involve the manner of Lizzy’s death, its abruptness and consequent grasping for every available technology in the desperate attempt to reclaim what was being lost by the minute during that dark and horrifying Tuesday. I am asking about the relationship between Lizzy’s soul and body when her heart stopped for seven minutes, and afterwards when the ECMO was inflating her lungs and pumping her blood. I’m wondering about the place that dignity and integrity of the body had throughout the course of her death, about the brutal measures that were taken to retain her life and the visible cost to her precious flesh along the way. At the time, we saw Lizzy’s death as medical failure, mostly because that is how her doctors and the hospitals saw her death.

Afterwards, we heard the statement, “There is no treatment for Leber’s Congenital Amaurosis,” and took that to mean that technology simply hadn’t advanced enough to be able to preserve the minimal sight with which Cecilia was born, even for just a little bit longer. We heard the terms “dialysis” and “kidney transplant” as proposed solutions to Cecilia’s nephronophthisis when the only evidence we had was that she tested homozygous for the genetic aberration IQCB1. “Who knows where technology will be in ten or twenty years?” I heard repeated to me over and over by those trying to bolster my faith in science’s inevitable progress, not understanding that these answers, for me, were the wrong answers.

I continued receiving the wrong answers, in part because I continued asking the wrong questions. I was so sure that Lizzy’s death must be attributable either to my failure to seek medical attention sooner or the hospital’s failure to treat her more effectively. I couldn’t understand why doctors with degrees from Harvard Medical School gave me, at best, misty and ambiguous responses to my questions about Cece’s prognosis. In the end, I am a product of my culture and have bought wholesale into our cultural myth that medical technology contains the answers to the mysteries of human suffering and death. To be fair, there were doctors along the way with the courage to look me in the eye and say, “I don’t think you’ll ever know the answer to that question,” and “We simply don’t know.” The fact that I ignored these answers is on my head, not theirs.

I am thinking a lot these days about culpability–not in reference to my culture or Lizzy’s doctors or Cece’s nephrologists– but in reference to my own. I have been so angry with the medical industry because, in my heart, I have felt as though they have failed me–not once, but twice, back-to-back–with the two most precious lives that were entrusted to me. But, like Cece, my world is doing nothing but growing bigger, and in the process, I am more and more reminded of my smallness in place, time, and understanding. The medical industry can only fail me insofar as I put my faith in them to solve my problems, even the most excruciating and difficult problems of my daughters’ lives and future. When I am real with myself, I can admit that I have attributed to medicine and technology power that it does not have, and then condemned it for its inadequacies.

Who is to blame in this situation, and can blame be apportioned neatly, with justice? There is no such simplicity, not to human life. We are raised in this culture in a fantasy, with the dystopic belief that if we only obey the strictures of science, we will live long and healthy lives, and that if we don’t, it was due to some lack of obedience on our part. How did we get here? How did we grow such confidence in a human activity and a human institution to save us from all evil and deliver us from sin and death? How has medical technology taken on the character and fervor of religious belief? And why does nobody listen when the scientists with the most integrity continue to tell us that they don’t have the answers we are seeking?

If we are at the summit of human evolution with our heads thrown back, gazing upwards at the ever-unconquered vista stretching before us, we are also blithely ignoring the fact that one misstep on this crumbling mountain will serve to remind us that we have not eliminated suffering or death. In some ways, we have simply altered the way we suffer and die. In most ways, we are asking the wrong questions in our very attempt to abolish suffering and death. We spend so much time trying to avoid, outthink, and out-maneuver biology, that we are not asking what it is doing to our humanity to deny suffering and death their meaning, place, and dignity in the span of human experience. We are not winning; we have never won. We are not in control, and this is the great heresy of our biotechnological age.

Each night, Cecilia holds my hands, dances back and forth in her crib, and chants, “Now I lay me down to sleep, I pray the Lord my soul to keep, may angels watch me through the night, and wake me with the morning light.” She then gives me a hug and kiss and plunks herself face-down into her fuzzy blanket in preparation for sleep. Yesterday, I drove home from school gazing again and again at her face reflected in the rearview mirror and wondered at the full roundness of her cheek, the perfect flowering of her lips, her wandering, uneven, and dazzling blue eyes magnified by her lavender-rimmed glasses. I thought about how much time I have spent looking at Cecilia and seeing blindness or kidney disease, and how effortless it seems for my new husband to regard and treat Cecilia as though she is no different from any other three-year-old.

I am thinking about culpability. I am thinking about my own culpability in looking at my beautiful, living daughter and trying to navigate the potential kidney transplant that lies before us. I am remembering every minute I spent with Lizzy, how effortless it was to simply be with her, to take delight in the gift that she was and ever will be. I am wondering how much of Cecilia’s life I have spent seeing her disease and diagnosis instead of seeing her. I am watching in my head the video my husband took of Cecilia dragging him fifteen feet into the bay so that she could be his “jumpin’ girl!” I am feeling her burrow into my arms, caress my cheeks, my ears, and whisper over and over, “Snuggle buggle.”

I am 30 weeks pregnant. This new son or daughter moves almost constantly, dancing and swimming, a clear reminder of presence that I did not create and do not control. I think about the kind of mother I want to be, and then I think about the kind of mother that I am. I think about the two years I had with Lizzy, about the irreplaceability of each of my girls. I think about Cece’s overwhelming, profound physical presence, about her little heart that beats regularly, her lungs that inflate evenly, her eyes and kidneys which struggle to do the work that is apparently so effortless for other eyes and kidneys. I think about today, the sun that is about to rise, the words which have moved from heart to brain to text.

All is grace.

All is gift.