They Get It

1. Elsa Gets it

I was so freakin’ proud of her last week.

As you know if you follow my Facebook page (and if you don’t, you should! We have fun there!) we have a fabulous young woman, Katelin, who’s running the Boston Marathon in honor of Clio for the Dana Farber Marathon Challenge.

This has been hard for Elsa. Katelin has been really wonderful about focusing on both girls (exhibit A: the picture on the donation box at her recent fundraising bake sale at work). But the fact is, Clio is the one with cancer, and the one at the center of this particular event. And for a gal like Elsa, who likes to be the center of attention — or at least share the spotlight equally with her twin sister (though she’d rather not have to share it at all) — that’s a bitter pill to swallow.

So, not surprisingly, last weekend when there was an event for making and decorating giant posters of the kid-honorees (to be displayed at the dinner the night before the marathon), Elsa went apeshit.

I knew she would. So rather than have her go apeshit at the event, I told her before we left that the poster we were decorating was probably going to just have Clio’s picture, and Clio’s name on it. I told her that I knew that was really hard, and a bummer, but we needed to remember that the reason the runners were running is to raise money to find cures for cancer. So there are some things that have to just be about the kids with cancer. Even though all of us hate cancer. Hoo boy, do we ever.

Elsa cried, and stomped, and said “No! It’s not fair!” and things along those lines. I reiterated that I knew it totally stank, and that I’d feel jealous too. But that this was a time when she had to be a brave sib. I knew she was brave. I knew she could do it.

And then, after a few minutes and a listen to her new favorite song (groan) in the car, she stopped crying. She pulled herself together. And we had a really good time decorating the poster. Elsa even wrote “My Sister” down the side in colorful block letters. And then surrounded them with Justin Bieber stickers. (She only knows that one song — thank God — and now considers herself a superfan.)

The sibling jealousy part of this whole crappy boat voyage is absolutely draining. I mean, as if it’s not always hard where twins are involved, now we’ve got a stupid life-threatening illness in the mix. (And 80% of the time, it’s Elsa who’s jealous of Clio, and the attention and “goodies” she gets, not the other way around.)

Anyway, I was really proud of her for getting it. For pulling herself together and being a team player.

Go Elsa.

2. Clio gets it

A couple of weeks ago, Clio and I were at my favorite high-end boutique, Target, and when we were in the checkout line the cashier, a woman in her 60s or 70s, saw Clio’s chic lack of hair and asked if she had leukemia. I told her she did, and the woman said “We had a little boy who had leukemia.” I didn’t ask, but from the woman’s age, and the way she said it, I assumed her son died.

We had a nice chat — she handed me my bag with wishes for strength and luck. Then, in the car, Clio (who had only been half paying attention to the conversation) asked, “How did she know I had leukemia?”

“Well, she saw your hair,” I said, “And I guess she just guessed, since it’s the cancer most kids get. And her son had leukemia.” (I didn’t have to add that last part; I’m not sure why I did.)

Clio paused, and then said, “Did her son stay alive?”

I told her I didn’t know, but I thought maybe not. Then I quickly, emphatically reminded her that her son would have had it a long time ago, when they didn’t have medicines like they have now. I reminded her that most kids who have leukemia get all better and are fine.

“You’re going to be fine,” I told her.

And then I ask if she ever worried about that. She shrugged in a sort of noncommittal way, and asked if she could please now have some of the pretzels we just bought.

Then a few nights ago, the topic came up again: she’d just gotten her Lovenox shot, and was putting a bead on her string accordingly (Dana Farber offers this cool program called BEADS, where kids string beads representing various parts of their treatment; we do a bead for each shot now, plus a “special” bead at the end of each week). I asked if she wanted to write or draw how she was feeling in the little notebook that comes as part of the BEADS kit, and she did. She drew a happy face, and then I helped her spell the words she wanted to spell:

Happy

Tough

Strong

Brave

Proud

Silly

Scared

Teddy Bear-ish

I told her those were all great words. Then I asked, “What do you feel scared about? Getting the shots?”

She shook her head.

“What, then?”

Another shrug. And then she said in sort of a silly, baby voice, “Die.”

We’ve never really talked much about death with the girls in conjunction with Clio’s cancer. We haven’t seen a reason to do so, given that as far as we know, she’s going to kick this thing and be fine. Statistically speaking, it’s overwhelmingly likely.

At the same time, we have talked about how serious cancer is. Especially in the beginning, when we felt a need to explain to Clio why she was being subjected to so much medicine, so many procedures; why we had to stay in the hospital. We told her how important it all was, so she could get better.

And there have been times when we’ve had reason to explain that not all people with cancer do get better. Times when the girls have no doubt overheard offhanded conversations — from us, or from other people — about people dying of it.

Kids are smart. Even little ones. They pick up on stuff.

But last week, when Clio wrote those words in her notebook, was the first time I ever heard her express any fear — or even acknowledge the prospect, concerning herself — of dying.

She gets it. And even though I think that in some ways it’s important that she does, it also breaks my heart a little.