It is flu season, again. My son, Jack, is as sick as he has ever been in all of his four and a half years. Not as intense as when he had RSV as a baby, but in his older age, he fooled me into expecting that every sickness lasts only one day and that none of them confine him to the couch. This is day five of the fever that is burning up his energy and still has him prone.

Sometimes a retired-by-motherhood scientist has more information about disease than the average mom should know. I naively entered the science profession with the hope of minimizing suffering and ultimately reaching the holy grail of defeating a disease; eradicating it from the population. When my kids are sick, I keep going to bad places in my mind discovered in my ex-profession, like pneumonia, drug resistant bacteria, cancer, cancer, cancer. . . 

At my first job in the Bay Area, I signed up to volunteer at the hospital, reading books to children in the ICU. They were the helpless ones from birth to seventeen who had very serious diseases and were forced to stay in a sterilized environment every day. I thought that I would be able to go to their room and smile and read and talk and help them feel not so alone.

I would go to the cupboard where the books were stored and select the ones I wanted to read that day. Then, I would scrub my hands until they were raw, put on a mask over my mouth, and go to their room and give them the choice of selections and read the story.

The first day, in all of my peppy optimism, I went to Darlene’s room. I was warned before I started the program not to ask the names of the patients, not to get too attached, but I asked her name because that is what you do when you meet someone with whom you exchange names. Darlene was a chatty eight-year old and I entered the room with her talking excitedly to the nurse about ghosts. I was a bit surprised that she was speaking about ghosts while fighting to live, but when I later left the room the nurse explained that Darlene was talking about her “phantom” leg; the fact that she still felt her leg even though it was lost to cancer.

I was taken aback that someone so young could speak so candidly about such a topic, without remorse. I figured that she didn’t understand, but was quickly corrected when she explained the whole process how her brain is tricked and that she would get used to it. This was my first insight into the resilience of children. Their viewpoint on life is not mired by all the what-ifs; this is what it is what it is and they deal with it -- often with a smile on their face.

It broke my heart. I felt sad for her, even though she didn’t seem sad herself. I was so mixed up seeing all of those smiling kids who were so sick. It forced me to see life differently. Darlene picked a story that I had never read about -- Humphrey the lost whale. It is a story about beating the odds, surviving when all odds are against you, accepting help when you can, and fighting like crazy to live.

Labels: children with cancer, drug-resistant bacteria, ghosts, hospital volunteer, Humphrey the lost wale, Jennifer O'Shaughnessy, phantom leg syndrome, pneumonia, scientists, sick son

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