Rani

Practicing winter
Does not blunt the icy shards,
Mother’s heart is pierced.

Rani is about five.  I remember the government officer asking, “You mean you will take Rani too?”  I’m still not sure why he asked, but she is different from the others.  She used to spin around and around, and bang her head, and wave her arms — and she didn’t seem too aware of what was going on around her.  And she had some pretty disgusting habits, which is probably why her family could not keep her.  But she is a sweet child, and her spinning stopped, and she only hits her head if she feels she is being seriously ignored.  She learned not to pull off my glasses because I yelled really loud!  Instead she reaches and pulls my head down so she can kiss me.  Rani loves Barney songs, and will watch a DVD for hours, waving her hands.  she has rhythm and sometimes i enjoy tapping with her. She has no understandable language.

Last week Rani had a seizure that did not stop, and she was in the pediatric intensive care unit at Calcutta Hospital for two days.  One of her caretakers was always with her.  The emergency room took her immediately, and the hospital care was excellent.  Since we had no history we decided to do some investigation, thus the icy shards.

I’m a doctor but in these situations I’m more mother than doctor.  I know this child has no language, little understanding, can’t walk because she has little control over her limbs, and can’t talk.  She can feed herself finger food, but cannot take care of any other of her needs.  someone once referred to her as retarded and i was so angry.  I remember thinking, “how dare he call her retarded!’  To repeat, I lose my clinical objectivity with my kids, and these children have become My kids.”

Then i read the EEG report… slow background waves, encephalopathy.  This is very bad.  How could I not have been prepared?  Knowing, seeing, cutting through levels of denial, the things we tell ourselves.  I wrote to a friend that sometimes I think Rani will just snap out of her state and talk to me.  This will not happen, I tell myself.

How do I look at her now?  I’m sad.  I want her life to be as good as it can be.  I wonder what happened to her — probably post measles and/or chickenpox.  And today I found myself wondering about spirit.  Where is spirit?  Is it affected by brain injury, encephalopathy?  She is sweet.  She is innocent.  Whatever her life is, I’m glad she is here.  She is a part of our family; she is one of us.

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