Thursday, February 26, 2009

Tuesday, February 17, 2009

What a way to go

Step one: deal with the impending death of your 4 year old son.

Step two: be thankful for this being the way he will go.

Henry is comfortable, thanks to some morphine for headaches. His personality, intellect, and sense of humor is intact. He's sleepier and sleepier, almost noticably changing daily. The kid who barely slept 8 hours a day on the chemo that everyone assured us would snow him is up to about 15 hours of sleep with night and naps. He's loving food, he's enjoying rituals like cartoons, reading books, doing puzzles. He enjoys family, visitors, new experiences.

Our hope is that he'll just continue to get sleepier and sleepier, until he passes. We've seen some other kids with Henry's tumor not be so lucky. We've seen some other kids with other cancers really not be so lucky. And of course, children die all of the time from other causes, traumatically, in the hospital, unpredictably. What a luxury to be able to have this time with him, to tell wrap him in love and comfort.

There's so much to be thankful for. I just have to keep reworking step one.

Friday, February 13, 2009


We're sitting on the couch, watching cartoons.

"You know, death came last night."

My head whips around. "What, honey?"

"Death came last night."

My mind is searching all of the various words that I could be misinterpreting that comment into. Can't come up with anything. "Death, honey?"

"Yeah, you know, Death, the other hospice nurse."

"Oh, Henry, her name is Beth."

"Oh, yeah, Beth..."

Friday, February 6, 2009

How Do I Love Thee?

Let me count the ways. They seem immeasurable, innumerable, just as the ways I will miss thee.

Yesterday one of the hospice workers commented on the need to learn how to be a family of four, not five.

My first instantaneous thought was "How tragic! That poor family" and only a split second later fully realized it was my family we were talking about.

The human mind is so unwilling to accept death. Mine is doing everything it can to continue to push it away, even now.

Wednesday, February 4, 2009


A recent source of humor for us has been Henry's style of speaking. He never asks for anything directly, but instead comes about it in a roundabout manner. "These are really good chocolate chips," he'll say, and patiently wait for you to ask him if he wants any more. If I fail to follow his cues, he casually moves his hands as if to say, "Well?".

We're surmising this derives from our manner of speaking to him over the last year plus. It's been important to him, and easier for us, if things seem to be his idea (which I guess is the case with most of us).

Henry has recently taken a turn for the worse. His tumor has grown, we are planning on trying another palliative chemo, but we frankly don't expect much benefit from it. He continues to feel well several hours a day, but the fatigue and nausea gets the better of him, especially at night, and he gets very agitated.

He continues to take everything in stride. He never asks why he's not feeling well, why he gets medicine several times a day, why he can't seem to sleep more than a few hours at a stretch. But sometimes, when he's very upset, he cries "I just don't know why I don't feel good", and I wonder if he's asking me in his roundabout way to answer him.

Sunday, February 1, 2009

Object Permanence, part 2

I wrote after Henry's diagnosis of my struggle with a feeling of betrayal by the universe. It wasn't that his cancer was a betrayal, but the fact that the universe knew before I did. I spent a lot of time wondering about future betrayals, worrying how to weather them.

The grass is not always greener on the other side of the fence. But why am I always looking at the other side? Why not keep my toes in my own grass?

As time has gone on, I've spent a lot of time worrying about the other side. How would it feel to experience life with a child who had no chance of survival? How would it feel to have your last Christmas with him? To think of all of the things that would never be? I couldn't imagine it would be anything but agonizing.

I was wrong. Life is not agonizing. There's a lot of unpleasant emotion to be sure, but there is yet so much joy and love. The universe and I are back on good terms, being as open an honest as we can, and as I am being as trusting as I can. I'm no longer searching for betrayal, wondering what will tip me off to badness ahead. I know my path, and though it has yet to unfold, I'm no longer afraid of it.

I just have to keep focused on my own patch of grass.