What Will They Remember?

Me, circa 1981. I remember little bits and pieces of being in our church choir.

The other day I was trying — really trying — to try to remember kindergarten.

I didn’t come up with much: a vague sense of the layout of the kindergarten classroom (for some reason I’m pretty good at remembering spaces), the face of my kindergarten teacher Mrs. McCarthy, her giving us some stickers once and joking, when someone asked where we supposed to put them, that we could put them on our noses, and then saying, disdainfully, “you all look very silly,” when we did just that. (It felt like such a betrayal!)

I remember a few of my experiences beyond school as well, but I can’t quite distinguish between what’s a bona fide memory and what’s a photograph in the family albums at my parents’ house.

My memories of myself at seven, eight, nine are equally hazy. It’s not until eleven or twelve that I start to remember more, and have a clearer sense of not just what I did, but also how I felt.

And thinking about all this leads me to wonder, as I’ve wondered in the past: how much of this whole cancer thing will the girls will remember when they’re adults, or even adolescents?

Maybe because it’s so much more intense than anything I (or most people) experienced as a young child, they’ll remember more. But maybe it will all be as hazy to them as my life as a young child is to me, with a few standout memories, but not much more.

On one hand, this seems like a blessing. How nice for them — and Clio in particular — not to remember all the medications and needles and side effects and stress and fear and jealousy and missed experiences and activities.

On the other hand, crazy as it sounds, there are parts of this experience that I do want them to remember happily. Stuff like hanging out with the wonderful child life and music therapy staff at the Jimmy Fund, and batting at Fenway Park, and singing with their dad at shows.

And I like to think that this experience is shaping their characters in positive ways: teaching them strength and courage and resilience. I think it’s fairly likely that it will. And hopefully all that good stuff is outweighing whatever less-than-good marks it will leave on their psyches.

There’s another thing I wonder about sometimes — especially lately. Well, I’ve been wondering about it a LOT lately, in fact.

Alastair’s getting a substantial amount of publicity for his new album, “Singing Our Way Through.” He’s been on the web versions of Katie Couric’s show and Good Morning America, on Radio Boston (which is a big deal for us NPR junkies around here), and lots of blogs. There’s more on the way.

And there’s obviously a lot of focus on Clio  (and, to a much lesser extent, Elsa, which is another whole ball of wax — the jealousy possibility, that is). There are people from all over the country saying “God Bless little Clio,” etc. etc.. on the comments for the Katie Couric story and on YouTube and elsewhere. (They’re saying other things, too, but I’ll cover THOSE little gems on another post.)

One of the big cornerstones of this whole blitz is the fabulous (in my unbiased opinion) music video for the track “When I Get Bald” which is getting 5-digit views on YouTube, etc.  I mean, it’s no Gangnam Style, but it’s reaching more eyeballs than we ever thought it would. And Clio features prominently in that, along with 2 other bald and beautiful cancer patient kids.

Clio (and the two other kids) really enjoyed being a part of it — as did everyone else. (I was the errand girl, sometimes meddling director, and Back Head Fred artist. I was also being Clio’s “mirror” during the part where she is touching her cheeks and head while looking almost at the camera.)

Clio, I should say right up front, fully considers herself a professional (yes, professional) musician. For a long time she’s said she wants to be a musician when she grows up, and she adores “writing” songs and singing. While she’s not someone who’s always been comfortable being in the spotlight, like her sister, over the last few months, it feels like she’s purposefully working to become more so. She feels a real sense of empowerment, I think, with the “Bald” song, and is very proud of the fact that she helped write two of the songs on the album.

And still, we try to check in with her regularly, and make sure she *wants* to sing with Daddy, and that she’s OK with people — lots of people — seeing her picture, and knowing her story. She always says yes.

I love that Suri hates the paparazzi.**

But the girls don’t really have a frame of reference for what “exposure” means. Hell, they don’t even quite understand what the Internet is.

Someday, though, they will. Now, I so think probably a good deal of the stuff on the Internet referencing the album will be gone. I mean, the web does, of course, have a long memory. Still. A giant solar flare or foreign cyber attack is bound to wipe out a few million servers before they’re teenagers, right?

But a lot of it will stick around. And we’ll want to show it to them down the road. (We are showing them some, but shielding them from a lot, too.)

I just hope they don’t end up feeling like we exploited / invaded / overstepped / etc. by sharing our family’s story so publicly. I hope teenage Clio isn’t all, “OMG, I can’t believe you guys let so many people see me looking so bald and chubby-cheeked!” (Somehow that doesn’t seem very Clio-like, though….)

And what of this blog, you ask? Well, I think about that a lot too. But I don’t feel too many qualms about it because 1.) While I do have a nice little following, this isn’t exactly yahoo or ABCNews.com. (I mean, close. Just add three or four zeros to my monthly hits and it’s practically the same.) So it feels different. More important 2.) There is so much more context here. This is a detailed, ongoing story, where the narrative is controlled by me — not by journalists or bloggers.

I talk to the girls about the fact that I share our family’s story here — and other places. Again, they don’t really get it yet. But as they get older, they will. I try very hard not to cross certain lines of privacy and intimacy. There is a lot I don’t reveal or delve into here. But appropriateness is all quite subjective, isn’t it? Some people didn’t feel Sally Mann crossed the line by photographing her children repeatedly (and sometimes in the buff). Others did. One of her grown children, at least, seems to have come out unscathed. I don’t know about the others. Or Sally herself.

I just hope our children can forgive their parents for turning our family’s story into words and music, the way we don’t seem able to help ourselves from doing — and sharing it with the world, as artists are wont to do. It’s a matter of love, a matter of meaning and — quite frankly — a matter of survival, I think, for both Alastair and me.

And now here’s that awesome video. It features Clio plus two other awesome, bald cancer patient kids, as well as some friends of ours who agreed to go under the knife (or put people there) a couple of whom are professional actors, PLUS the very generous barber who owns the cool shop where we filmed. (Can you spot the pros?)

Kudos and thanks to Grain Digital who produced this video at a very generous discount — and thanks to the donations from folks like you that made it possible.

PS — If a child in your family has cancer or another life threatening illness, you can download the CD free at singingourway.com. And even if cancer has never touched your life, this CD is designed to be enjoyed by ALL families, and most of the songs aren’t even cancer-specific.

 **This picture is meant as a joke. I do not think that my husband resembles Tom Cruise in any way, shape or form, and for that I am very grateful. However, I do love the fact that Suri does — or did, anyway — hate the paparazzi. Can you blame her?