Just about everyone who has visited us or been on a mission trip to Guatemala has met Esbin. He’s the 10 year old disabled kid that 6 months ago could barely move. He is undiagnosed, and has been bedridden for the last 3 years. Today Guicho and I spent the day with Esbin, and his sister Mildred, in Guatemala City visiting doctors.
The Doctor
Guicho’s dad is a friend with the most well known brain surgeon in Guatemala, who made time to examine Esbin this morning. He asked detailed questions about Esbin’s history, then he did a complete physical exam.
Unconvinced, he called a friend who is a neurologist, who immediately came over and examined Esbin as well. I was shocked at how much love and concern these two men (clearly among the top in their field) seemed to have for Esbin. Together with the neurologist, we talked through what they believe to be their diagnosis and how we could best attempt to rehabilitate. But before any diagnosis could be official, we would have to have several tests done.
So the Doc called another specialist and requested an exam. The specialist said he could take us next week, and the Doc explained our situation and pleaded to see us immediately. They obliged, and scheduled us for later the same day. When we left his office to head to the next appointment, he refused payment, saying “I am so thankful for the way you are helping my people and the children in Guatemala. We are going to get Esbin well, and you will never receive a bill from me.”
During the next appointment, Esbin had all of his nerves tested for response time. Little needles stuck throughout his body while getting zapped with an electric charge. He cried and yelled for his mom. This was difficult for all of us. When we were leaving, the receptionist said “normally this tests cost Q3,000, but the doctor called and said to only charge you half - that he was paying for the other half.”
The Day
In between appointments we had lunch at Pollo Campero, a famous fast food chicken place in Guatemala. (We asked the kids earlier if they could eat anywhere in the world where would it be.) So today became their first time in a car, in a mall, and to Pollo Campero. Needless to say they were overwhelmed as they looked around at everything. It was sweet though…especially as Mildred (13 yrs) stood in amazement as the people came up and down the “moving stairs.” She would touch the top step with her foot and quickly pull it back, wondering how it disappeared. Finally, Guicho took her for an up and down just for fun…
We still have some blood tests to do next week, then we’ll return to the main doctor for a complete diagnosis. From there we’ll form a rehabilitation plan likely to include dental work, nutrition, and therapy. (The neurologist said Esbin’s teeth are so bad that it would be impossible to begin a nutrition plan until he has major work done.)
From what Guicho and I gathered during all of the meetings, Esbin has something similar to Gilliam Barre Syndrome. Basically after getting sick, the immune system attacks the nervous system and begins a process of attrition to the entire body. While this is a disease that is normally able to be rehabilitated back to health, what sets Esbin’s case apart is the 3 years of living in a vegetative state following the onset of the problem.
The Difficulty
What I have wrestled with is the whole 3 years of nothing stage. I watch Esbin’s mom, his sister, and family. They seem like good, honest people. They obviously love him dearly. Initially I was frustrated with them and partially blamed them for not doing anything. How could they just let this kid lie in bed, wasting away into nothing for 3 years!
But over the last year I have gotten to know them, their community, their culture, and their lifestyle. Sadly, until someone else intervened with suggestions and offers to help, this is what happens in extreme poverty. Esbin’s family cannot afford to eat every day, much less pay for bus fares, doctor’s appointments or medicines. They lack the education & sophistication to read – much less figure out how to call and make appointments, study symptoms or diagnose a condition. Mom and dad have to be gone all day just to try to provide enough for the family to eat, which makes it impossible for a physical therapy program, special diet, or any type of regular exercise.
The reality is, Esbin’s parents didn’t have any idea what was happening with their son. And if that’s not sad enough, they didn’t have any way to try to figure it out or try to help him. They didn’t know where to start. All they know each day is the challenge that is before them: work long days in hopes to eat that day, figure out how to carry Esbin back and forth to the bathroom, try to maintain a home and a family, and do it all over again the next day.
So I continue to wrestle. Why do I have so much? I always say I know the answer… “God blesses some so that they can help others.” But then I wonder why did he bless me to help them, and not them to help me? Why for me is eating breakfast, lunch, and dinner a given? Not even a thought? When for them one meal a day is a prayer and a hope? Why do I get the liberties of all-you-can-eat 24 hrs a day, warm home and bed, car, computer, tv, restaurants, desserts, travel, and entertainment… while families like Esbin’s suffer and just long to get through another day?
I don’t know. (And please don’t email me any textbook theological answers!) One thing I do believe is that God wants me in this place. He wants me to wrestle, to ask the questions, to cry and to hurt. I believe he wants me to feel the guilt – along with the joy – that comes as I seek about these things.
The longer I live as a Christian, the more I learn that there are no simple answers to many questions of the faith. There is only a journey. A journey that requires our willingness to jump in blind, letting go of everything we thought we knew, and just take a walk with Jesus.
