Excerpted from Saving Sammy by Beth Alison Maloney © 2009, Crown.

As with sleep, sitting in a chair was only a fond memory for me. There was always something else to be done. I was constantly running up and down stairs to get him things or open doors or help him with one of a thousand tasks.

I called my mom. “Am I enabling him?” I wondered.

“You have to help him, Beth, he’s just too sick,” she answered.

I would be up in my third-floor office, attempting to work, when he’d bellow for me from the first-floor den. I’d charge down the two flights to see what he needed. When his voice was particularly frantic, I’d know he needed me to open a door right away. Since he avoided bathrooms as much as possible, it was easier for him to walk into the woods to relieve himself. He could not, however, open the door to get outside. He also waited until the very last minute to call me. I’d race downstairs and into the den.

“Mom, I want to go outside for a walk!” He’d be hopping from one foot to the other, like a little boy who suddenly had to go.

I’d rush to open the door, knowing full well he’d explode if I didn’t hurry. He’d run outside in his contorted way. I’d leave the door open and go back up to my third-floor office. I waited up there because he got uptight about inconveniencing me if I stayed downstairs. Ten or so minutes later, I’d hear him calling me, and I’d know he was back inside. I’d go downstairs to close the door. Then he’d ask me for something to eat. I’d go upstairs and bring it back down, then I’d climb the two flights back to my office. Twenty minutes later, the whole thing would start over.

James had a set of walkie-talkies. We put one downstairs in the den and the other in my office. This made it easier for Sammy to reach me quickly.

“What would happen in a fire?” I asked Sammy one day. “How would you get out?” I watched him rubbing his feet back and forth, repeating the few steps he’d just taken into the den.

“If there’s an emergency, it’s different,” he answered confidently, with barely a break in his motions.

“So you could open a door and get out?” I needed to know if I could ever leave the house again. Maybe I needed to ask my friends to do my grocery shopping.

“Yes,” he answered quickly, nodding, intent on his compulsions.