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. To follow, please leave your email address.

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Saturday, February 23, 2013

Writing About Grief: Emily Rapp

Still Point of the Turning World

Emily Rapp’s son Ronan died last week just short of his third birthday. I knew of Emily through a friend, and while I understand some things about grief, I won’t say that I understand everything she is feeling and thinking about the loss of her child. I lost my wife. I understand that situation. Although there are many similarities in everyone’s grief, there are also significant differences. 

-- Emily lost a child instead of a wife.

-- Death came because of illness over a period of time instead of suddenly and unexpectedly.

-- 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, and Emily soon knew that he had begun his decline.

A decade after my wife’s death, I still want to understand more about grief and death’s place in life. I want to hear the insights that Emily is learning.

Each month Emily had to watch Ronan lose another ability rather than acquire a new one, as babies normally do. She learned to love him in the moment, free of expectations for the future, and adjust how she interacted with him as his symptoms became worse. Her essays about her journey of two-plus years with Ronan have been published in journals over the months and I have read each one and appreciated her touching insights.

It’s hard to watch someone you love slowly disappear inside their body. This is what my friends Judy and Francesco went through when their spouses died after years of struggle and rounds of chemotherapy to deal with brain cancer. I don’t know which is worse – to lose someone suddenly or to watch them suffer over time. Judy says she thinks both ways are horrible.

When I worked with severely and profoundly mentally challenged children years ago, I was friends with a teenager who had a different genetic disease that ends life before age twenty. He had lost his coordination, had trouble speaking and swallowing, and he knew his brain was deteriorating. He was observant and liked to tell witty jokes. I miss him. 

Shortly after Ronan was diagnosed, Emily wrote in her blog that today he was happy, giggling, and experiencing joy.

The book collection of these essays, The Still Point of the Turning World, comes out in March.

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