Death of a Child

Book: Still Point of the Turning World, Emily Rapp

            Emily Rapp’s son Ronan died before his third birthday. I knew of Emily through one of her friends, so I won’t pretend to say that I understand what she feels or thinks about the loss of her child. I lost my wife early. There are similarities, but 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. Soon after Ronan was born, he began to die.

          In the beginning, Emily watched Ronan gain new abilities, and then watched as he began to lose each one rather than acquire additional skills and develop into a young child. 

            This is also how we feel as we watch our parents, who were wise, vibrant and decisive, lose their abilities as they age and become shells of the people they once were.

            Emily 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. She shared her journey with Ronan in her blog over those months. I read each one and appreciated her insights and attentiveness in the midst of what was tearing her apart, and I read her book, Still Point of the Turning World when that came out.

            For several years I worked in an institution with severely and profoundly mentally challenged children, and was friends with a teenager on another ward 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 but wasn’t as witty. I struggled to understand why this was happening to him. 

            Shortly after Ronan was diagnosed, Emily wrote in one post that he was happy today, giggling, playing around, and experiencing joy. She focused on loving Ronan each day as if each day was forever. In Emily’s words, we learn the cost and beauty of loving someone unconditionally.