Ronan Louis, just shy of three years old, passed away on February 15, 2013, at around 3:30 in the morning in Santa Fe, New Mexico. He went peacefully, his mother, Emily Rapp, said in her Facebook announcement, surrounded by family and friends, and undoubtedly by his many beloved stuffed animals, the unrelenting guardians and protectors of his brief life.
It was not an unexpected passing. Shortly before his first birthday, Ronan was diagnosed with Tay-Sachs Disease. The news was crushing. For those of us who have met Emily Rapp, it has always seemed incomprehensible that there was something in the world that Emily could not overcome through sheer force of will (see her autobiography on growing up physically challenged, Poster Child, for a closer look at Emily's sheer force of will). But this was too big for even Emily, with her husband, Rick, and little Ronan, to conquer. Tay-Sachs is a pretty insidious genetic illness, and it has taken its toll. For all parents, this is a solitary, brutal process that those of us who have never faced it could never begin to imagine.
But Emily is a writer, so she did what most writers do when things start to implode, and some sparse version of sanity is required. She wrote. She started with the blog, created shortly after Ronan's diagnosis, Little Seal (which is what Ronan means in Irish Gaelic). In the end, her grief was too big to fit on a blog, and Emily wrote an entire book, The Still Point of A Turning World, due out on March 7, 2013.
In a real sense, for those of us who never met Ronan in person, but who experienced him through Emily's words alone, he continues to live. But for Emily now, I'm sure that no words will ever replace the smell of his hair, or the flush of his skin after a bath. The Ronan... the real one...the one she birthed and bathed and held in her arms... has gone now. He came, he stayed for a bit, and then he left.
But, oh, the lives he touched his brief time here. Ronan was the pebble who broke the surface of our calm little pool, and those who most loved him -- his parents, his grandparents, aunts, uncles, cousins, the closest of their friends who were like family -- moved out from him, in concentric circles, touching the next row of us, and the next and the next, and we all moved outward, in our rings, each touching the next circle outward, on our way to the shore.
But Ronan will always be at the center of it -- the pebble that broke our calm for a bit, until he had to go.
Peace, little seal. Peace and light, wherever you may need it.
(photographer: Catherine Davis)
EDITOR'S NOTE: For those who know Emily, she has asked that, in lieu of flowers, contributions may be made to the National Tay-Sachs and Allied Diseases Association.