I have been following Emily Rapp's work for a long time now. She is a brilliant writer that faced an unimaginable tragedy when her son Ronan was diagnosed with Tay-Sachs Disease. Tay-Sachs causes a progressive deterioration of the nerve cells leading to an incremental loss of mental and physical faculties: seizures, blindness, inability to swallow, etc. The symptoms typically begin around 7 months and the child usually doesn't live beyond 4 years of age. Ronan died just before he turned 3 years old. Emily's incredible courage and total commitment to creating a life worth living for Ronan has been deeply, deeply inspiring to me. Emily split with Ronan's dad shortly after his diagnosis but at the tail end of Ronan's deterioration, she met a man who supported her through the last phases of Ronan's life, eventually becoming her husband and the father of her daughter whom she gave birth to in March 2014. Emily's memoir about Ronan is titled "The Still Point of the Turning World". A crushing and profoundly beautiful account of her experience mothering a child who was dying.
Of course this is every parent's nightmare. After my kids were born, I occasionally revisited Emily's story and if I went in too far I would end up writhing on the couch, stifling my sobs so as not to wake the kids or worry my husband. In the end though, beneath and beyond the absolute torment of losing a child in this way, is Emily's resilience and a love so powerful that it extends beyond the physical confines of a body not meant to evolve past 3 years of age. The following excerpt from an article in the New York Times exemplifies the immensity of her love and courage (http://nyti.ms/1fu8ALN):
Writing is my vocation, but in this case, it was my salvation. I have always thought, and now I firmly believe, that imagination is the most powerful tool any of us has. The situation with Ronan was irrefutably tragic, but my love for him was the opposite. We were not tragedies. Love is never wasted; otherwise it is not love.
I think of him, of the smell and feel of his remarkable hair, his tigerish eyes, his little coos and sighs, his soft body and sweet physical presence, his smell of powder and prunes. He is no longer in the world but he is alive in my memory and in my dreams. He will be alive in his sister’s as well, just as she will be alive, I hope for many years, at the center of my life.
Ronan taught me how to be a mother; how to live for and not through a child, how to love no matter what. I can’t wait to see what my daughter will do, but most of all I simply want her to live, and for her life to extend long beyond my own and her father’s. This is the only parenting plan I hope to need.
Beautiful Ronan is pictured below.