Parents and grandparents who taught me
One of the
earliest experiences was with a mother who was taking care of her son with a
colostomy. She knew exactly how to clean it, dress it and what ointment to use
etc. But she always had arguments with the nurses – rather, the nurses were
always fighting with her. During discussions with her, she taught me an important
lesson. She said “ Your nurses may know a lot about colostomy in general . But
I know colostomy in my son better than they know. I live with him and I know
how to take care of colostomy in my son”.
Once the nurses conceded that fact and were willing to listen and care
for the boy the way she wanted it done, there were no more problems.
This became
a lesson for me in medical practice in general. I may and indeed do know more
about a disease than the parent. But the parent knows more about that disease
in her child better than I know.
Another
lesson was taught by several parents on different occasions in different ways.
Some families fell apart when one child was diagnosed with a chronic disease.
Some families coped well and were resilient. Resilient families taught me that
their strengths were in one or more of the following areas: supportive relationship in the family,
someone outside they can depend on for help, faith in some tradition or
religion, trust in one person who can help guide them and someone with a sense
of humor in the family.
One other
feature of these parents who coped well is their desire to help other families
with similar problems. They were not dwelling on their own bad luck all the
time. They took care of their own children with the disease and found time to help
other families. Those are the parents who started the American Juvenile
Arthritis Organization which is still doing excellent work supporting families
of children with arthritis.
One other
experience taught me about humility and the power of faith. One five-year girl
with severe lupus became comatose due to her disease affecting the brain.
Almost every organ in her body was affected by the disease. We had administered
every medicine available at that time. She remained in coma for three weeks.
Throughout those three weeks her grandfather and grandmother took turns to be
on her side 24/7. They used to tell me that they were praying all the time,
sometimes holding the girl’s hand. That girl woke up one day and has been disease-free
when I saw her last time in her teens. You can make whatever conclusion you
want, but the grandparents, particularly the grandfather, believed that they
“prayed” that girl out of coma.
There are
many more stories of this kind, each one with an important life’s lesson.
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