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 Some of the routine begins to feel normal, like this weak and withdrawn Nathan is the "real" Nathan and then little things creep into the day that really hit hard.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.


To-Do List:
  1. Explain to seven year old son that he is dying. (The books and the hospice people say he already knows.)
  2. Explain to five year old daughter that her beloved big brother is dying.
The don't teach this stuff in parenting school. Perhaps they do. I assumed I could handle the whole parenting thing without formal training.



Nathan is sitting next to me on the couch doing something on the computer. He just let out a genuine laugh. They are few and far between...and beautiful.


I seem to post here a lot about how I wish things were. Or rather, I seem to post about how I think about things, not necessarily how I actually feel about things. I want and try to cherish each and every one of these days, but the truth is that much of every day really does just suck. The days are so long. It is crazy how long each and every day seems. They drag on forever. I got up with Nathan at 4:30 am the other morning to do something for him and I knew I wasn't going back to sleep so I stayed up. Now *that* was an even longer day. At the end of each day I don't want to go to sleep because I know I'll just have to get up and do it all again.

I took a three hour nap yesterday. I didn't mean to. I just laid down for a short rest and crashed. I think it was perhaps one of the best and most restful stretches of sleep I've had in awhile.



With Nathan under hospice care now, it has been hard for me to not think about the last 4+ years. My feelings are conflicted. It has been hard, for sure, and sometimes (okay, often) I focus on the negative. I have to fight that though. The last four years can't have been hell. I can't let myself view over half of the time we have been blessed with Nathan as a living hell.

As the physical and emotional exhaustion take hold now, the challenge becomes to not cheat ourselves of the time we have. Some of it will be hellish. There is physical pain. There are the early stages of grieving. There is crazy fear that encompasses all kinds of things. We have to try to turn it on and off as quickly as the changes come because we are rapidly approaching the cap on the smiles, hugs, and good times as a family of five. One of my many prayers is that we can, if not enjoy, take some comfort in those good moments we have left.