I first wrote out the narrative to this story because I needed the catharsis. The first night, I wrote nearly 4,000 words. And I wasn't initially sure I wanted to share it at all. But then I started thinking about the surgery, and updates. Initially, we didn't tell much of anyone, in part because Christopher is a deeply private person. But as he started withdrawing from his normal activities, and as the formal diagnoses were made, we opened up. We had to. But trying to maintain three different circles of information for people who primarily text, email, or Facebook is a bit much.
Finally, though, Christopher decided he wanted to share his story. There aren't a lot of personal stories for AVMs out there, they're too rare. And most of the information on both AVM and Chiari is based on adult patients. He is hopeful that maybe, a kid or a parent going through something similar, will read our story and maybe, not be as scared as he's been.
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