Making Space for Mystery

This past week, I took a continuing education course in bioethics from my graduate school, the Pontifical John Paul II Institute in Washington, DC. I’m not sure what I expected from this course, but I don’t think I expected it to address the heart of my grief so acutely. I suppose it was inevitable to some degree, when discussing end-of-life ethical concerns, for certain triggers to arise. It is clear that the traumatic memories from the hospital are as close to my mind and heart as they ever have been. Suffice it to say that I kept quiet on the day we discussed such things.

But as for the other four days, one central theme seemed to guide every discussion; namely, that life and death and the building blocks of which both are made are not objects belonging to human beings to be manipulated at will. What is it that Gandalf says in Fellowship? “Many that live deserve death. And some that die deserve life. Can you give it to them? Then do not be too eager to deal out death in judgment.” And yet, biotechnology is engaged in precisely this occupation: deciding who gets to live and die, how his life or death should be enacted, and why it can be justified according to science.

It is impossible when discussing such things to not enter into at least a superficial level of self-examination, and that is exactly what I found myself doing throughout the course of last week. Exactly how much and to what degree am I occupied–indeed, one might even argue obsessed–with attempting to engage control and mastery over Cecilia’s life? There is no adequate way to catalog the hours I have spent educating myself about nutrition and the immune system or vaccines and the nature of childhood illness. If asked, I could list the foods I feed her, the supplements I give her, the exercises I do with her, and the routines I’ve established attempting to optimize sleep, melatonin production, hormone regulation, kidney function, metabolism, digestion, and visual acuity. I could read you passages from some of my books on brain science and trauma and tell you exactly how and why I am incorporating this information into how I parent Cece.

And what would you learn at the end of this litany? That I am using science in a desperate attempt to guarantee Cecilia remains alive. That I am using every tool and resource available to me to attempt to wrench her from the death I feel is so constantly imminent. You would not be wrong in thinking this. And I cannot say that even when seeing this overarching objective guiding my every choice and behavior, I will now choose to do anything different.

No, I think I can be transparent enough with myself to admit that I am engaged in an endless, exhaustive war to keep Cecilia alive. Particularly considering that she has a genetic disease that can, at any time, manifest in an attack on her kidneys, I cannot reconcile myself to any other course of behavior. There is no ignoring the reality to which I wake every day. And thus I cannot rest, and I cannot stop my all-too-conscious crusade for her life.

It is, rather, in reference to Lizzy’s death that I found myself questioning my driving impulse for control. For six months following her death, I subjected myself to a psychological and emotional mutilation that had no end and no beginning, whirling instead in a shrilling vortex of guilt that consumed every conscious second. To me, there were only two possibilities: 1) cause and effect: I did or did not do something that resulted in her death, or 2) the world is a terrifying, anarchic wilderness in which there is no solace and no safe harbor–only the grains of sand falling into the hourglass, counting down the minutes until you too are consumed by ravening, senseless nothingness.

Perversely, I preferred the first option, because it carried with it the twin implications that I needed to atone for Lizzy’s death (and therefore externalize some of the pain I was feeling by forcing it back on myself) and that I had something approximating control in reference to Cecilia’s life. If I could boil it down to cause and effect, then I knew that I could simply decide to do more, be more, or work harder to keep her alive, even if it meant torturing myself for the rest of my life with the thought that I somehow, in some way, contributed to Lizzy’s death.

Six months after I lost her, I received the autopsy report from Children’s Hospital and set up a call to discuss it with them. I used to say that Lizzy’s death was like a murder case I was trying to solve, where I could somehow determine that I was the murderer, but during that conversation, despite my many attempts to convict myself, the lead doctor on Lizzy’s case and the clinician who did the autopsy absolved me from all guilt regarding her death. Regardless of their sincere attempts to exonerate me, I came away from that conversation with one salient fact that I have not since been able to escape: that Lizzy first manifested symptoms of a cold on Saturday morning, and she would have been dead by Tuesday afternoon without medical intervention.

MRSA is just that aggressive, they told me. In children and adults. It’s just that virulent. A two-year-old never stood a chance. By the time she was sick enough to warrant hospital intervention, there was no hospital, surgery, procedure, or technology that could have saved her. Children, they said, have this amazing ability to hide how sick they are.

And as for the questions that remained, there was no one living who could provide me with the answers. When did she contract the original, viral pneumonia? When did the MRSA (bacterial) pneumonia opportunistically begin to prey on her weakened system? And where did it enter her body, when she had no open wounds? And when did the MRSA cause sepsis to set in . . . causing the organ failure that caused the cardiac arrest that caused the brain swelling that caused the brain death?

Asking these questions was like trying to count how many angels were on the head of a pin, they said.

There was no answer. Just as no one could give me back Lizzy’s life, no one could give me the answers I so desperately needed as to why she died. With a gradual anguish, I began to reconcile myself to the nausea-inducing prospect of accepting the unacceptable–the unanswerable.

And here I am now, nearly sixteen months to the day since Lizzy died, and I am no closer to the answers I need to survive. Cecilia is here, breathing and sighing in her sleep beside me, and I wonder with a vague despair how long into this coming winter she has a chance of surviving before death takes her from me as it took her sister.

I have become, it seems, a strange fusion of an obsessive, robotic control-freak and a pathetic wretch sequestered to the corners of life, waiting to be victimized. How does such a person receive the idea that maybe mystery is inherent to the twin problems of life and death?

I have always struggled with the emotional surrender that faith requires, to the point where I can recognize that it is both the thing that I find most difficult about my religion and that which most defines it. The name of this blog itself chronicles my struggle for surrender when I cannot see, understand, or accept the thing to which I am being asked to surrender. Fiat. In Fiada.

Elizabeth Aviva Fiada. My daughter. My miracle. My mystery.

I have spent months, if not years, studying biology, health, and nutrition from more angles than I can count. The one constant in all of my research remains that the more we learn, the more we understand how little we know. The course this past week on bioethics helped me to reconsider Lizzy’s death from the light of this biological wellspring of unknowing.

Is it possible, I began to ask myself, that all of the things I did to optimize Lizzy’s health and nutrition simply had no chance of keeping her alive . . . and simultaneously possible that these same things have a very real chance of mediating both Cecilia’s blindness and her kidney condition? Is it possible that taking Lizzy to the hospital sooner would no more have saved her life than not going through a hideous divorce and losing my firstborn would have prevented Cecilia from developing such an obscure and terrifying genetic deficit? Is it possible that health and disease, genetic damnation and epigenetics, life and death–all swirl together in a vast ocean of the unanswered and unanswerable?

. . . is it possible that the one thing that I most refuse to accept is the only thing that holds the answers I need to survive?

Mystery is not something to which I want to submit. My stomach turns, and I taste bile at the prospect that maybe there are times and ways in which I cannot shape my destiny or the destinies of my children. I, vain and clawing vulture that I am, want to believe that I have control over something; that what I do matters, and mistakes and failings do not constitute a life. But what if it’s more complicated than even this? What if choices and consequences and reason and logic are all swept up in a symphony of surrender that transcends even the ultimate characteristic of human destiny: our free will?

What if God is somehow able to take every will of every man, every frozen or immolated embryo, every withered body gasping out its last breath on a mechanical lung–and weave them effortlessly into an orchestra of meaning, truth, and beauty too vast and incomprehensible to even posit? What if every excruciating component of health that I incorporate into Cece’s life actually serves to enhance it, while not even coming close to actualizing the full capacity of the biology which animates and informs her being?

Many scientists have told us that the microscopic vision of the lives of bacteria and fungi are like opening a door into another world. And yet these are the very creatures which inhabit us, constitute us–on which the lifeblood of the planet itself depends. They are a whole world within our world. And each human being is also a whole world within our world.

A world of possibility, of joy, of unspeakable and unnameable meaning lay within each of my daughters. What if Lizzy’s death never actually severed my connection to that world? What if there are ways in which I can continue to explore the world contained within the precious vessel of her life–regardless of whether or not she inhabits her body? What if the world contained within Cecilia is informed, shaped, and forever changed by the life of her big sister in the womb that they shared and the cells that dwell now inside of her remembering and remembering and remembering . . .

And what if Lizzy is the answer to every question I’ve ever asked or will ask, the solution to my struggle with my faith, and the resolution of a life spent restless and wandering, until one day one sperm met one egg and transformed the weary ache of wondering into a seething quest for the wellspring of wonder itself?

What if the reason why I cannot learn the reason Lizzy died is because the most rational things are actually ineffable? What if mystery rather than reason constitutes the source and summit of human life?

And what if my little angel of light, my luminous mystery, prays with her palms open and eyes lit by starlight, asking the Creator to point her mother home by way of the unknown path?