It’s Hard Out Here for a “Sib”

This blog post is brought to you courtesy of Facebook — more specifically those of you who offered up suggestions for a topic over on my Facebook page. I was feeling a touch of blogger’s-block, and asked for topics. And you delivered!

I may touch on a few of those topics over the next few blog posts — except for kale, because I’ve made my views on that topic abundantly clear, and there’s nothing more to say. I do not like kale.

Today, by popular demand, I am going to write about a gal who is long overdue for her own blog post — Clio’s bright, brave and otherwise fantastic “sib” (as siblings are known in pediatric cancer circles), Miss Elsa Margaret.

Poor kid. Sometimes I really wonder if this whole experience is harder on her than it is on Clio. I mean, Clio has to suffer the physical end of things — the hospitalizations and clinic visits, the chemo, the medications (as many as five different kinds a day, some of those twice a day, depending on where in her chemo cycle she is) and the nasty, into-the-thigh-muscle shots twice a week.

But Elsa has to deal with the fact that her twin sister is, necessarily, getting more attention and spending more time with us, whereas before the scales were always balanced, more or less. We try our hardest to keep things “even-steven” even here in Cancerland. But it’s next to impossible.

The first month after Clio’s diagnosis, when Clio was inpatient and either Alastair or I or both of us were staying at the hospital was tough on Elsa — she missed us, and was jealous of the intense amount of attention (and loot) Clio was getting.

But once Clio was home and things normalized a bit, she did pretty well. Her transition to school went much more smoothly than we anticipated it would. Even Clio’s emergency hospitalization when she had her seizure and my visit to the ER didn’t seem to faze her. Not at first.

But things have been tougher lately, and she’s been misbehaving more at home and at school. Clio’s return to school is a big part of this: I got Elsa to open up to me about it, in one of those extremely rare moments where I felt like I actually knew what I was doing as a parent.

We were on our way home from “Just for Sibs” night at Children’s Hospital — an evening program where siblings of kids with cancer are invited to come and eat pizza, hang out and do some organized activities. She was so excited to go, and seemed to have a great time, but didn’t want to tell me much about what they did or discussed.

So, apropos of nothing, I said, “You know what I really hate about Clio having cancer?” and proceeded to list several things that sucked about it: having to go to the clinic all the time, having to give her all kinds of medicine, having to worry about something going wrong, not being able to spend as much time with Elsa, etc.

And — to my surprise and self-satisfied delight — she took the bait: “You know what I hate?” she said. “I hate that now that Clio comes to school everyone wants to play with her all the time and not me, because they think she’s special.”

I said “yeah?” and “hmm” and “yeah, that must be hard” and all that stuff you’re supposed to say so kids will keep talking and …. she did!! I couldn’t freakin’ believe it. (Advice in parenting books almost never works.)

And then I told her about a new girl that came to my class once when I was little (I may have been combining several instances…) and how everyone wanted to sit next to her and be her buddy in line and play with her at recess, and Elsa said, “Yes! That’s what they’re like with Clio!”

I told her it wore off eventually, once people got used to her, and that the same thing would probably happen with Clio. Given that Clio’s done five or six full days at school now, it’s probably going to happen any minute. (Clio, incidentally is doing really well at kindergarten — although she hasn’t been exactly sympathetic to Elsa’s plight…then again, well, she’s five.)

But kindergarten jealousy isn’t the only thing Elsa is wrestling with these days. It came to our attention recently that she’s got some residual emotional trauma around my panic attack / psuedo-seizure / accidental overdose / whatever you wanna call it. As brave and unfazed as she was by all of it in the moment, it clearly — and not surprisingly — left a mark.

The other night, Clio made some reference to it, and she and Alastair were talking and Elsa ran away with her hands over her ears saying she didn’t want to hear about it, because it would make her have dreams about it, or see the “pictures in her head.”

“Pictures of what?” I asked.

“Of you lying on the floor.”

Ugh.

We’ve gently suggested that talking about it would probably help Elsa feel better, and not so scared. And we have managed to talk with her a little about it — in tiny little bite-sized portions, careful not to push.

She understands that the incident is still painful for me, too. The other night, during a little chat on the topic, as she sat on my lap she said, “You keep saying you’re sorry about what happened, but you don’t have to because it wasn’t your fault.”

This child amazes me. She can go from crying and whining because her sister got more pretzels to saying something like that — that! — within a space of hours.

We’re in the process of trying to find a counselor that she can talk to, or play with, or role play puppets with, or whatever it is that kids do with child therapists. (I should ask my dad; he used to be one). And also trying our damnedest to give her the attention and one-on-one time she deserves but also the structure and normalcy she needs.

Let it be said, though, that Elsa does get to enjoy some perks as a result of having a sister with cancer: This weekend we saw The Grinch Who Stole Christmas musical, courtesy of free tickets from the Jimmy Fund Clinic. The girls were just as awed by the Wang Theater, where it played, as they were by the show itself. (“It looks like Daddy Warbucks’s mansion!” said Clio. “It’s a palace!” said Elsa.)

But my favorite moment of the night, by far, was at the end of the show when the Grinch is trying to bring himself to say “Merry Christmas” to the Whos down in Whoville, but can’t quite do it (“Merry Chr– Chr— “) and all the young kids in the audience, completely spontaneously, started shouting out “Christmas!”

Clio, feeling clingy and lousy on account of the steroids she’d been taking, and preferring to cuddle in my lap for the whole show, didn’t join in. But Elsa did, jumping up and down and yelling “Christmas!” at the top of her lungs. It appeared to do the trick.