I’ve password protected these posts for a number of reasons, primarily because I’ve heard it isn’t smart to post things like “we’re out of town this week” on your personal blog and second because I don’t want to do any self-censoring. Not everything here is for public consumption. At least not right now. Maybe in a year or so after we know the outcomes. I’m hoping that in the future, someone else going through a similar experience might be able to learn something from this. But for now, it’s just among family and friends.
We’re at the end of Day One here in Cleveland and things feel very uncomfortable. We’re having moments of wondering “why are we here?” There are families whose kids are in so much worse shape than ours. Those feelings come and go. It’s not unreasonable to think like that, but it’s a dead end.
We’ve been thinking about this for years, but still, when you finally take the Big Step, everything looks different. Jean and I both talked about it. Whether it was sitting in front of Dr. Kotagal or again later with the Nurse Practitioner, going through our story again, talking through Lisa’s list of symptoms, every step of the way, we were haunted by the feeling that “we don’t really have it so bad, so we?” But that really isn’t the question. Comparing our story to other stories has never felt right, everyone’s life and pain is their own. And this is not ours, this is Lisa’s. We need to do what we can for her.