Every Wednesday

Every Wednesday I will post something about grief. Sometimes it will be a reflection on an aspect of grief’s landscape. Now and then I will share from my own journey of grief, because in the sharing of our stories we find strength and build a community of people that support one another.

Saturday, February 23, 2013

Death of a Child

Book: Still Point of the Turning World, Emily Rapp (Black), Penguin

Emily Rapp’s son Ronan died just short of his third birthday. I knew of Emily through one of her friends, but I won’t pretend to say that I understand what she feels or thinks about the loss of her child. I lost my wife. While there are similarities, there are also significant differences.

The cause of Ronan’s death was Tay-Sachs, a genetic defect that kills every baby born with it within the first four years of life. Over the months, the infants increasingly lose their ability to see, hear, feel, touch, move, and breathe. There is no treatment and no cure. Ronan was born terminally ill. As soon as he was born, he began to die.

Each month Emily watched Ronan lose another ability rather than acquire a new one, and she learned to set her expectations aside and love him in the moment, free of thoughts about the future, and adjusted how she interacted with him as his symptoms became worse. Her essays about her journey of two-plus years with Ronan were published in journals over those months. I have read each one and appreciated her insights.

For a time I worked with severely and profoundly mentally challenged children, and I was friends with a teenager who had a different genetic disease that would end his life before the age of twenty. He had already lost his coordination, had trouble speaking and swallowing, and was aware that his brain was deteriorating. He was observant and liked to tell jokes. His brother was also there and not as witty. I struggled to understand why it was happening. I miss him. 

Shortly after Ronan was diagnosed, Emily wrote in her blog that today he was happy, giggling, and experiencing joy. Emily focused on loving Ronan each day as if each day was forever, even as week by week he lost more of his abilities. By reading Emily’s words, we learn about the cost of unconditional loving.

By loving others, they become eternal.

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