I wasn’t sure I should write this. A large part of my brain told me to forget what I’d read, forget the pictures of the boy, forget the key and terrifying fact. Another HLH victim, this time a boy of 10-12. He’d had a stem cell transplant and had been in remission for two and a half years. Two and a half years. We’d clung to what we’d read, that most relapses occur within a year, a milestone we comfortably passed last fall. I’ve not let myself think about it since. I don’t think you can, or you go crazy.
I’ve read other parents’ stories, stories of very real PTSD. I’ve been blessed to avoid it, but not without scars. All of us parents whose kids have been critically ill bear them. There’s no way to fight at your child’s side for their very life for months without scars. There’s a whole year of my life that I either don’t want to talk about or which makes people uncomfortable when I do…our lost year. But it happened, and we’re still living with the long-term repercussions. There is no roadmap for crap like this. Sometimes you just get dealt a bad hand, and you just have to find a way to get through it.
Then every once in awhile…too often…you hear someone else’s story, a story of tragedy. And you realize that your own burden isn’t so bad after all. Rest in peace Mihir, and prayers to your loving family. Your remission…your healing…is now permanent.
“The life of the dead is placed in the memory of the living.” –Marcus Tullies Cicero