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.
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.