Before burying the first spoonful of ashes, I tried to think of a few meaningful words to say, but everyone was looking at me, grimacing and frowning in their effort to — what? not cry? wrap their, our, minds around this awful, unfair thing that had happened? Tears were choking me, words weren’t coming, and finally I fumbled out something or other that I can’t remember now. I think it was okay. I wasn’t the only confused, tongue-tied one; none of us knew what to say. August’s birth, on January 12, 2010, was the best thing that had ever happened to us. His death, the same night, was the very, very worst — the unimaginable worst.
I intend to tell our story of the past fifteen months and counting since August died. After he died, I searched the Internet for stories of other parents with children with the same problem, but encephaloceles are so very rare — one in 5,000 to 10,000 births. I didn’t find much. I hope that writing our story might help someone else who needs connection and information like I did.
Although I fervently hope that no one else ever needs this type of information. I hope and wish no one else ever has another baby who dies from an encephalocele. I send that wish up to the stars, though I know they are as cold and dispassionate as the Great Void.
With love to sweet August,