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Saturday, September 4, 2021

Life's Lessons - Who taught me What? (11)

 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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