Thursday, January 15, 2015

Damn, she’s a good kid

Greetings All,

I had every intention of doing a blog post last night, but well, that didn’t happen.  Decided to hang out with Shelley instead.  Woo!

Tonight I had a meeting with the students and parents who are traveling to Washington DC with me in April (at least I hope I can go, I’m working on that detail in another email, later).  More on the meeting later, but first on a conversation I had 3x today.

“How is Amie doing?” 

It’s such a well intentioned question, and one I don’t know how to answer, really.  Because, honestly, it’s a question that needs to be more fully defined.

The first answer that I want to say is, “She’s doing good.”  That’s the answer that ends the conversation if I think the person is asking to be polite.  I think a lot of people don’t want to bother me, don’t want to upset me, and possibly, don’t really want to know.  They can’t imagine themselves in this situation, and are not in the head space at that moment to really want to wade in emotionally to the reality of my life at the moment.  But they also don’t want to be rude and not talk about it, so they ask “How is Amie doing?”  

If the person asking is someone I know better, and I know they’re asking because they want to wade in, I answered it like this,  “I don’t know how to answer that.  I guess it depends on what I compare her to.”  Because, in reality, it’s totally contextual.  How she is doing is compared to what you put her next to, and compare her.

If you put her next to a “normal” 4.25 year old, she’s doing utterly terrible.  She has horrific memory and word finding lapses.  She cannot walk.  She does not eat.  She can’t tolerate many smells, nor loud sounds, or even tight hugs.  She’s a wreck.

If you put her next to a person who’s not alive (trying to be delicate in my language here, yet as real as I can be), she’s doing great.  She’s still talking to us, hugging us, loving us.  She’s still creating art, and living life on her own terms.  She’s comfortable, and she’s interested in things.  She breaks your damn heart with how sincere she is in her hugs, in her greetings, and her joy in speaking about certain things.

I guess the last thing, and probably the most appropriate thing is to compare her herself.  If you do that, I think the most appropriate way to describe her is diminished.  She’s there, but there’s less of her than there was in October.  Less memory, less specific word finding, less energy, less focus, less stamina….less Amie.  But she’s still there, and there’s extreme value that.

To throw some medical details at you…  her bone marrow post-radiation seems to have recovered and stabilized.  She hasn’t needed any platelet or red blood cell transfusions for the last 4 checks we’ve done (2-weeks).  They’ve actually moved us down to once per week visits to the hospital as well.  She’s still not really eating, although we had a small spike in consumption in the last few days where she’s had a few bites of things.  Baby steps…

Anyway, tonight I had the meeting for the Washington DC trip, where the parents and the students had to come listen to me talk about rules and stuff, fill out forms, and then they got to start the process of figuring out which hotel room they were going to be in.  Shelley has asked me, as well as building principal and several others, if I didn’t want to just pass that off to someone else still in the building.  It’s hard to describe.  My most emphatic answer is no.  It’s something that is inherently positive, and fun, and amazing to take kids somewhere that will so dramatically open their lives to a different experience.  

I love taking kids on this trip, because you only need to stand with one kid at JFK’s tomb, looking back east at the Lincoln Memorial, with thousands and thousands of tombstones between the two points…and watch a kid get it.  Not just get it but really and truly GET IT.  They start to connect the dots…the sacrifices you make as a teacher for them, and the sacrifices that their parents/guardians make for them…and the soldiers who died for them to have their freedoms that they so callously disregard.  To watch that process is magical, and I guarantee each and every one of you would want to put up with so many annoyances, and not sleeping, and all this other hassle to have that moment of transcendent connection and wow with a kid.  Yes, I want to go on this trip, how could I not?

The meeting is also good just to see the students again.  We all complain about our jobs, and teachers are no different than anyone.  We get annoyed at the ill-trained students, the annoyances of the legislators who think they’ve got the key to teaching, and they need to make you do it their way, as well as 100s of other small things.  But being away from the students for the last 11 weeks is hard too.  I thrive on the symbiotic connection between us where I feed them, and they feed me.  I really miss it.  Not to mention the daily structure and routine of things.  I enjoyed seeing them tonight, and seeing their energy, and making fun of a few of them in front of a room of 400.  Sorry Brian and Patrick.  :)

One last thing to report out is both awesome and gut-punch worthy.  Amie’s growing her hair back, and is elated.  Totally excited.  She has always wanted to have Anya’s long hair, and has never gotten it.  She wanted it pre-diagnosis, but it was über-fine, and not nearly long enough.  She had these soft little curls that were just amazing.

Then she lost it all, and it grew back.  It got to a really adorable length, and survived numerous rounds of chemo.  

But then we dove back into hardcore treatment in the fall and she lost it again.  She’s been in that bald-headed cancer kid wearing a cupcake hat for months now, and that’s probably who she’ll be in my memory.  Here's us doing what we do best together...being silly.

But she now has eyelashes again, and has stubbly nubbins of hair, at least according to Shelley.  I haven’t had the chance to look, as she does not like having her hat removed, and I have no desire to be needlessly cruel to just check on somethings as minor as that.

Anyway, to Amie’s statement, the reason I’m wandering in my thoughts here…  She keeps saying, “Daddy/Mommy, I can’t wait until I have long hair again…I want to have braid across like Anya.”  (Shelley does this special thing where Anya’s hair has a headband like braid across the area above her forehead).    Oh man does this hit me when she says it.  Yes, Amie, you can have that hairstyle anytime you want.  Of course.  Of course.  Whatever you want.

Damn, she’s a good kid.  She knows nothing, but never complains either about her deficits.  Ever.

Thanks for sharing our journey with us friends.  Thank you sincerely.