Rob and Scarlett are going camping tomorrow with her kindergarten class. Although there are some moms going, it’s mainly a dads’ and daughters’ trip, so even if I didn’t have ALS, I wouldn’t be there. And that makes it easy for me to imagine what I would be doing this weekend if I wasn’t in this wheelchair.

A long run. A visit to my new niece. Maybe a drink with girlfriends. Sleeping in.

Certainly not having a caregiver arrive at noon on Saturday and stay until my family gets home on Sunday. To feed me, brush my teeth, put me in bed. I’m not trying to have a pity party, but I can’t help sitting here thinking this is too weird to be real. I used to have a life, and it didn’t revolve around needing constant care.

I’m glad they’re going camping, though. It will be fun for them to spend time together, away from the constraints of my reality. Nice for Rob to get to know other parents in an environment where he’s not worried about taking care of me. This is a theme that’s surfacing more and more often in my mind. I can’t escape from my disease, but that doesn’t mean my family shouldn’t be allowed to. Read More>