Things have been tough lately. Nathan's quality of life has really slipped over the last week+. We don't know exactly what is going on and it is tough to determine how much we really want or need to know. If you read his journal you know that he is generally exhausted, has experienced increased discomfort in his legs, and is just really run down and tired.

These developments aren't unexpected. They are very expected. We don't know that things will decline steadily from here, but that is clearly the fear. And it is tough fear to cope with. To be honest, we've had a longer period of relative normalcy than I expected after coming home from NYC at Christmas, but it hasn't been as long as I had hoped for.

I'm personally not dealing all that well. I'm not finding the balance between doing the things I need to do to keep myself functioning and giving the time and love that I need to give to the kids. Getting it right it is an impossible task, but I have to get closer. All family time is sacred in its own way. The time right now, no matter how hard or how scary it is, is more sacred.

I'm also struggling with work. I sit down and I work but my head is so scattered. I can't switch between tasks without getting lost. I'll read the same paragraph over and over before the meaning will sink in. I'll look at code that I wrote and am familiar with and it will just baffle me. Its like I have to bang and bang and bang any detail or understanding into my head. I feel like tasks that used to be easy are now difficult. I do what I can and the people I work with and for are very supportive, but its crunch time and I find myself not able to come through. It is a terrible cycle. I feel emotionally distraught because of my personal life so my work suffers so I feel emotionally bad about that.

And when things are really bad, how do you answer that seemingly innocent and casual, "How are you?", greeting that people have for you?



Sometimes I write something and think it captures what things are like and possibly gives readers a glimpse into the life and how it is for me. Most of the time I fail. There is a Boston cancer dad, Will's Dad, that really just hits the nail on the head in a lot of his writing.

Many people have asked me about our summer plans lately. We don't make plans. We avoid plans. Planning is bad. Planning brings the fear and the worry bubbling right on up. Will Lacey's father nailed it in his post, Save the date! Nov 28 2073. He called a preschool to prepare for Will's entry in the Fall.
If I just called a restaurant to book a reservation for my 100th birthday celebration in 2073 I would feel less awkward and weird than I do right now after that call. In any event, we’ve been asked to call so we’ve done it.
That is exactly it. That is how I feel about any talk that involves Nathan's future, no matter how soon in the future the talk may be about.