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"Why I was ready to say goodbye."

By EMILY RAPP

My son Ronan died on February 15th of this year, just shy of his third birthday. For two years he suffered from Tay-Sachs disease, a genetic neurological condition with no treatment and no cure.

When I was in high school, long before I became a mother, my father gave me a 1978 Ford Fairmont for my sixteenth birthday. This rollicking boat of a car guzzled gas, struggled to start in the cold Midwestern winters, and was constantly hungry for oil, which I dumped in using a funnel that my theater group had painted with my nickname: Rapp Star.

I loved this car, red and white, rambling and adorable, and outfitted with a stereo system from the decade in which I was born: an eight track player.

On the weekends I scoured garage sales and quickly collected, sometimes for only 5 cents each, an impressive array of 70s musical hits: John Denver, The Carpenters, Cat Stevens, Abba, and best of all, the Eagles. I barreled around my small Nebraska town, windows down no matter the weather, smoking the occasional cigarette and belting out songs with girlfriends as we cruised down Main Street on a Saturday night, changing the lyrics to There’s a girl my Lord in a Fairmont Ford, slowing down to take a look at me. C’mon baby; don’t say maybe. You’ve got to know that your sweet love is going to save me.

This is Ronan.

I’ve thought of this Eagles song – and sometimes sung it aloud — in the weeks since Ronan died.

Over the course of his life, he went blind and lost all volitional movement. He had regular seizures that were not completely controlled by medication; in the middle of the night he often woke up screaming or laughing, depending on how the disease was affecting various centers of his brain.

For a few months he had “blue” seizures, during which we gave him oxygen and hoped for the best. His lungs needed to be suctioned because he could not handle his body’s secretions. Finally, he lost his ability to eat, and then he died. For those two years I had, as Don Henley sang, a world of trouble on my mind. I woke up every morning with a sense of dread and foreboding.

My marriage to Ronan’s father ended. I taught my students in a fog of sadness. I wrote and cried and sometimes, dreamed. I tried to memorize Ronan’s face, the sound of his laugh, his very subtle cues about what made him happy. All the while I knew that I would fail, as a mother, at the primal task of protecting my child from harm and suffering. He was beautiful, wholly good, perfect, and entirely helpless. Ronan was a happy baby, and he was deeply loved the way every child should be, but he also suffered. I could not save him.

During these past two years, in addition to asking for guidance and support from my network of powerful girlfriends, my parents, and, most recently, a man with whom I fell in love, I have amassed a psychological army of therapists, shamans, and yoga teachers. I sought out any available help to try and feel better, to manage the unimaginable horror of losing Ronan bit by bit. Living with a dying child is to exist in a constant state of adrenaline. The panic, the fear, the feeling of being gutted by the loss, was – and sometimes still is – overwhelming. It was almost impossible to relax, chill out, to be in the moment, to take it easy and enjoy the limited time I had with my son.

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Emily’s book, The Still Point Of The Turning World.

And yet that’s what Ronan did, he took it easy. He never panicked, he never complained. He never learned to hate, to obsess about the past or worry about the future. Often, when I placed him in the arms of someone for the first time, they burst into tears, moved on a somatic level by his sense of calm, his aura of peace, the fact of his complete trust. He gave up everything to live in that kind of advanced state, a kind of enlightenment, really, but he did live in it while he was alive.

When he was actively dying, his body shutting down, I concentrated on his release. I imagined him stepping through some shimmering curtain between this world and the next, his body restored, his perfect energy intact, running along a lake shore with other kids who had died of this same hideous illness and who were now mercifully free of its tenacious and terrible grip. I wanted him to die, and he did. Peacefully, and surrounded by people who loved him deeply and who were witnesses to his final moments of unraveling. I miss him, but I’m glad he’s gone.

Driving home along Highway 14 to the small town in New Mexico where I now live with my boyfriend, I often cry for Ronan, mourn my sweet boy, the grief bubbling up in its unexpected, chimeric way. The lights of Santa Fe glitter in the distance at the base of the desert mountains.

This lyric always floats through my mind: We may lose and we may win, but we will never be here again. No, Ronan and I will never be together in this life again. We lost our earthly connection, but the light of what he taught me shines bright in my mind and heart. The sweet love of my baby boy, my doomed son, did save me; he forced me to examine every area of my life, and to make it bigger, brighter, more dazzling and brave and bold and truthful to the life I’ve always wanted to live, a life I now have both the privilege and the burden to live without Ronan because he wasn’t allowed the freedom to make any choices about what his own life might look like.

I wanted my son to live, I wanted him to die. Life-in-death, the unavoidable and ultimate pairing, the one that teaches us everything we need to know about living now with the knowledge that nothing lasts forever. When I think about Ronan, about his early days, about his final days, and about all the days in between, I think Take it easy; take it easy; don’t let the sound of your own wheels make you crazy. Take it easy, my boy. You are set free.

Emily Rapp is the author of  The Still Point of the Turning World (published by Two Roads) and Poster Child: A Memoir (BloomsburyUSA, 2007) and . She is a professor of creative writing and literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico. You can purchase her new book here.

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