Drowning in the gray

I am not proud to be an American, as the cheesy song says, because “at least I know I am free.” I am proud to be an American, because I think Americans have the biggest, most loving, generous, and compassionate hearts of any people in the world. Ever since sending out the message last Friday about the grave situation of Aura’s baby, I have been flooded with emails filled with compassion, concerns, information, leads, and prayers from friends, family, and complete strangers. I am utterly overwhelmed—overwhelmed to tears.

Aura and her husband Carlos just named their little boy, Mynor Alexander Tujab Cal, yesterday afternoon. It is common here for parents not to name their children for days after their births because of the possibility of them dying in infancy. Mynor is suffering from occipital encephalocele, a condition that arises during the first month of pregnancy if the mother does not receive adequate folic acid. Yes, the situation is correctable with surgery, but since Mynor was born with a larger portion of his brain in the protrusion than is actually left in his skull, the odds are that if he survives the surgery he will be mentally and developmentally impaired.

Through a chain of connections starting with a professional photographer named, Steven St. John, who I took to Aura’s house that first day, I have gotten into contact with a neurosurgeon, Jorge Lazareff, at UCLA who has expressed a willingness to perform the surgery in Los Angeles. He has been in communication with the doctors in Cobán who originally attended to Mynor and others here in Guatemala gathering as much information about the case as possible. At the same time, there is another gentleman, Ed Mattson, who is currently trying to secure emergency visas, arrange flights, and raise funding for Aura and Mynor to go to California to have the operation. If the arrangements cannot be made to transport Mynor to the states, there is talk of getting Dr. Lazareff down here to Guatemala to perform the surgery. I have been on the phone with numerous Peace Corps staff members explaining the situation and ensuring that I have permission to accompany Aura, at her request, to wherever this procedure might take place.

I have been out in Chijacorral visiting Aura, Carlos, and Mynor everyday since last Friday keeping them up to date with any and all information I had received, providing them company, and bringing them small gifts of food and candies for their other children. Before today I always spoke of “possibilities,” but now with so many wheels set in motion I needed their definitive decision as to whether or not to move forward with all of this.

Aura and Carlos’ first language is Poqomchi’ and mine is obviously English, so I took Lisa along with me to ensure that my message was without a doubt clearly communicated to them through my Spanish and her Poqom. I told them there was a chance Mynor could die during surgery. I told them that there is a very good chance that if he survives he could live his entire life with mental problems. I told them this was a very important decision that would affect the rest of their lives and the lives of their other children. And I told them that regardless of what they decide to do, they are good loving parents who are doing all they can for their child and their family. After a couple of hours discussing the situation, they replied with yes, “Sí, Seño, aceptamos esta ayuda y queremos la operación.”

This whole situation for me has been an extremely intense mental and emotional struggle, and I can’t even imagine what Aura and Carlos are going through. In my hopeful naivety, I accessed the problem as black or white. Black: the baby dies in surgery or for lack of having the surgery. White: the baby survives the surgery. But there is so much gray, blinded by my desire to help “save a child,” I did not initially take into account. It is now with “possibilities” quickly becoming “realities” that a fear of the repercussions of this expansive gray area is consuming me.

Mynor surviving the operation left with mental and/or other continuing health problems is all gray. And with information that Dr. Lazareff has ascertained in the past 24 hours from doctors here, that is looking like the most likely outcome. Aura, Carlos, and their six other children live in a dirt floor wooden shack in rural Guatemala surviving off of a combined income of probably less than $9 a day. They realistically do not have the financial means or the knowledge to care for a child with a mental disability. And what kind of existence would Mynor have? Life here is difficult enough for “normal” children without major health problems. But Mynor is not my child, and being the one who opened the door to hope, I do not have the right to say, as horrible as it sounds, that it would probably be better for the whole family if this child dies than survives with a disability.

Have I meddled with something that I should have left to nature to take her course? Have I put two parents in the horrible position of having to make a gray-filled decision about the life or death of their child? Am I “playing God” only to create lingering disastrous results?

Over these past five days two contrasting scenes have constantly been running through my mind—one that makes its way into my thoughts quite often is from the movie Schindler’s List and the other is from the book The Zanzibar Chest by Aidan Hartley. In the scene from Schindler’s List towards the end of the movie, the protagonist, Oskar Schindler, who has courageously saved over a thousand Jews during the Holocaust, breaks down and censures himself over the lives he didn’t save. Emotionally distraught he holds up his Nazi pin and states had he just melted it down he could have saved the lives of two more Jews working in his factory. The Zanzibar Chest is a non-fictional book about Hartley’s experiences working as a journalist in war-torn parts of Africa. At one point he recounts discovering a still barely alive young boy in a mass grave of bodies that was just about to be bulldozed over in a refugee camp in Goma, Zaire (now the Congo) following the Rwandan genocide. In an effort to save the boy’s life, Hartley dug him out of the pile of dead bodies and took him to the medics. The boy died overnight, and Hartley severely regretted removing him from his peaceful resting place wrapped in the arms of his already dead mother.

It is these two scenes that represent my struggle. No, it is not a struggle of life or death or even the heart-wrenching struggle of having to make a decision on someone else’s life or death. It is the trivial struggle of feeling good about myself—thinking/knowing what I have done was right and for the “best.” Because over the progression of the last five days I have gone from Oskar, cursing myself for not being able to do enough, to Aidan, cursing myself for not leaving things be. I am sorry to all those I have gotten emotionally involved in the plight of Aura’s baby. I am sorry to all the doctors whose time I am afraid I have wasted in sending me diagnoses of the problem. But above all I am sorry to Aura, Carlos, and their family who, surgery or not, will suffer the most from my “help.”