Friday, October 03, 2014


The “secular” anniversary was a few weeks ago, but today, Erev Yom Kippur, is our Hebrew Cancerversary. A year ago, we started this insane chapter, this chapter that refuses to end.

So here we are, a year later. And everything has changed, but nothing is different. This is a recurring theme in our lives. Adi is still Adi, but there is so much to who he is, so much that makes Adi Adi….

Adi has matured so much this year. Every day, people come into his room and examine him and touch him and ask him questions and poke him and listen to him breathe. He has to move carefully so he doesn’t pull out his various lines. He had to get used to his bald head, and then rediscover his hair and eyebrows and eyelashes -- and then lose them again. He has to go for x-rays and CTs and intrathecals on days when he just wants to sleep. He has to fast, to drink contrast dye, to eat specific foods and avoid others. HE HAS A STOMA. He can’t just take a shower; he first has to have his PICC-line wrapped in cling-wrap, his stoma bag emptied. His body doesn’t do what he wants it to do, what he expects it to do. And he adjusts. And only very rarely does he cry, “It isn’t fair!”

I can’t say that I have matured. I’m still angry and bitter. Still resentful that the world continues to turn while my child is sick. Still annoyed that the fact that I no longer work means there is less money for things I want.

But I have learned some things this year. I do a pretty good differential diagnosis -- if the patient is Adi. I am really good at insisting my kid be admitted (or kept in the hospital) if I don’t think he’s healthy enough to go home. I can administer Neupogen injections. I can change a stoma base and bag -- even without gloves in a pinch. I can clean copious amounts of vomit. I can get my kid completely changed -- including his base and bag, and all the sheets on his bed -- in 26 minutes. (Dude, he’s heavy.)

I have not learned to be more patient with the world. I have not learned to hold light and love in my heart for crappy drivers, people who stare, people in front of me at the grocery store, nurses who access ports too slowly, nurses who are too busy to change bandages, technicians who do not drop everything to x-ray my child, and pretty much everyone everywhere who does not do exactly what I want at the moment I want it.

In many ways, I am still a teenager.

In many ways, my kid is the grownup.


persephone said...

If this is what being a grownup is, I wish *neither* of you had to be.

May the coming year be different in all of the good ways. xoxo