It is impossible to explain what it is like to watch Nathan slipping away. Some of the routine begins to feel normal, like this weak and withdrawn Nathan is the "real" Nathan and then little things creep into the day that really hit hard. Some of them just rip out your heart like seeing him reach out to hold his baby sister's hand when she comes to sit next to him while he lies in bed watching TV. I tend to feel so profoundly sad over the tender moments like that. Lauren is one. My earliest sketchiest memories begin at around three. She will grow up hearing about Nathan through us, but she won't have her own memories of her big brother.

It is also so hard to see him struggle to do things that he should be able to do. I just watched him wear out from putting about five or six pieces of Legos together. He had to push on some of the pieces pretty hard. I could see the tendons straining in his rail thin arms. It seems that he sometimes has a hard time focusing on the pieces to get them in the right place. He said he wanted to finish putting the helicopter together tomorrow and closed his eyes and fell asleep.