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 DoctorGuicho’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 DayIn
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.
today marks 13 years that kerrie and i have been married - and 18 since we started dating.
