Like Henry's illness, his death has been easier in some ways than I expected, and harder in others.
When Henry relapsed, I was surprised to find an overwhelming sense of relief. My anxiety level regarding if, when, how he would relapse had been so great, so constant, so unrelenting, that to not have to worry about the relapse anymore was liberating. I could just focus on him, on what was next to come, without wondering.
With his death, I found the same. It was less palpable than with the relapse, but there was still a sense of relief. I no longer had to worry if he would be uncomfortable. If it would traumatize the girls. If he would be scared. If it would take so long we would wish for the bitter end. If he would have to be hospitalized again. If I would regret his lack of IV access. If I would make a bad decision, or one that I would regret.
I also found that as a parent I had a huge sense of relief. I no longer was the parent of a child with cancer. I no longer had to walk the minefield of that life, scanning the horizon for infections, cancer, learning disabilities, emotional scarring. Next time a kid in my house pukes, that's all it will be: puke. Not cancer.
I felt this relief in the girls too, and we talked about it a lot. I made it clear that though it was nice to not have a sick brother anymore, it didn't mean that we didn't miss him, and it didn't mean that we wouldn't have all done it forever if we could. But no one misses cancer.
But just as the relief from physical pain fades as the memory of the pain fades, relief from cancer has all but disappeared.
I find that I have trouble identifying what I'm going through now, like there is so much going on in my mind that I can't pick out any individual agenda items. I've never walked this road of grief before, and it seems that it is so different for everyone that I don't know how to anticipate what is to come.
I feel a gathering storm, though, and sometimes I wonder if I'm prepared enough for it.