The Lives of the Dead

Some of the most interesting people I meet are dead…

Archive for the category “handicapped child”

Eternal Infant



For many years before I was born,  my parents prayed for a baby.   They went to church. They lit candles.  They visited shrines.  And then,  just as they had given up hope and were acquiesced to living their lives childless,  my  mother conceived.  They were overjoyed.

It was obvious at my birth that something was very wrong with me.  In another time or place, I would have been left to die.  I would not have been nurtured or fed and would not have lived more than a day, if at all.  Perhaps I might have been allowed to take only a few breaths before I was suffocated and buried without a ceremony, so no one except the mother and the midwife would have seen such an abomination.

But my parents did not live in those times.  They had waited too many years to be blessed with a child and they were too old to have another, so they cared for me with love.  They accepted me as God’s gift; as a test of their faith and devotion.

Their prayers were answered quite literally.   I was barely a person.  I remained an infant my entire life.   I was aware only of the pleasure of being held and fed by my parents; of being rocked and bathed and fed and caressed.   I could not walk, nor speak, nor feed myself.  Still, I was happy, cooing to the sound of my mother singing or laughing at my father’s tickling.  My parents did not expect me to live very long, and were dedicated to making whatever time I had on the earth as happy and comfortable as possible.

When other children my age were learning to walk, I remained gurgling in my crib.  When the others were starting school, I rolled around on some blankets my mother laid out in the middle of the floor.

For many years, I was small enough for them to carry,  but to both their joy and dismay, I did not die young but rather grew in size as a normal human, without ever maturing at all mentally.  This presented many logistical problems for them as it became more difficult for them to attend to me. As they got older, they had trouble lifting and carrying me.  It was a challenge and heartache to bathe and dress me, to change my soiled diapers.  I often hit them hard with my flailing arms and legs, leaving bruises on their face and bodies.   Even leaving the house was a daunting task. They did not have much of a life, not my mother especially since she was home with me most of the time.   They had created a prison for themselves, with me as their jailer.

I do not know if they had regrets about their decision to keep me with them.  I don’t think anyone would have judged them harshly had they put me in a place where others could care for me, or if they had been less attentive to my medical care and allowed infection or disease to take me.  But in their actions, they were committed to me.  It was the path they had chosen and in this life, I was merely an instrument of their learning.

When I was in my forty-first year, my father became sick and infirm.  He could no longer help in my care and in fact needed care of his own.  My mother was old and weak herself from years stress and physical strain and lack of sleep and inability to attend to her own needs.  She did not have the strength to care for both me and my father.   But the pain of giving me to the care of strangers was more than they could bear.

And so,  one night,  they fed me medicine that made me sleep and never awaken.  And when they were sure I was peacefully gone, they took the same.



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photo:  © James Whitlow Delano/Redux

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