Wednesday, December 31, 2014

Best Pie Charts of 2014!

This week, in all of my internet reading (and I do A LOT of internet reading, with as much down time as we have these days), I’ve been getting flooded with retrospective pieces, such as the Best Pie Charts of 2014!  (I wish there was such a thing.  I would click through on that).

So, I guess I might want to wade into the fray, and write a bit about the things that we learned this year.  Without further ado, the top things we learned this year <that I can remember/think of at 1:29p on New Years Eve 2014>.

When you open your lives and tell your story, it will draw people together. Through the blog, or Facebook posts, or emails, we have opened our lives to people to let them know what we’re going through.  At first, I started typing merely to provide a shield for Shelley, as the incredibly well-intentioned emails, phone calls, texts, and FB messages were going to drain her, and she needed all her energy and focus to take care of Amie.

Somewhere along the way, the posts became something more.  They became cathartic to me, letting me process, sometimes in the very moment of typing, the emotions that come from being the parent of a kid who is sick, and later dying.  

But they’re really more than that, too.  They’re a means to tie together a community.  I talked about reading Amanda Palmer’s book The Art of Asking a while ago, and in it she talks about how her sharing, her posts, her music, her tweets bind together the community that is her audience.  She shares with them, and trusts that her sharing, including her physical location certain days for fans to come say hi, will draw them closer and into a more caring and human place.

This year has been yet another example of just that.  In just the last month, two people that I had never met (Madison Y. and Laura R.) stepped forth and performed acts of service and caring for my family that I cannot explain.  They have never met Amie, nor my wife and older daughter.  I have met them both, but only after the fact.  They raised money for my family as a means to attempt to take some percentage of a burden off our shoulders…all because they felt it was the right thing to do.  For. A. Stranger.  That my friends is the power of trust and sharing.

People have no idea what to do in this situation.  When we get messages from people, we hear so many variations on the same message. We are so sorry to hear of this.  We have no idea what to say.  Argh.  Some people insert expletives.  Some people insert messages about prayer.  Some people just sit silent, and after a while tell us that it sucks.  We often then spend a few minutes making them feel better about it, and that’s absurd, and then you chuckle at the absurdity of that. Which makes me want to talk about…

“If there’s anything I can do for you, please ask.”  I wanted to talk about this for a second, but with a disclaimer.  What I am about to talk about is not meant as a rebuke, or a reprimand, or a call to action with us. We are fine right now.  But there are a LOT of people that you know that are in times of crisis and need.  I’d like to politely and kindly ask you to stop staying the above statement.

I know, at first blush, this seems rude.  Really rude, possibly.  Who am I to tell you what to say to other people.  But, stay with me here.  If this statement comes across your lips, you’re transferring the burden of action onto the other person.  You’re making them responsible for being weak, for being vulnerable, and taking the brave step to ask for help.  However, you have already recognized that they are in a position of crisis and they need help.  Instead of saying “if there’s anything…”, just help.

How can you help and identify their needs? Here are some thoughts…  Do they drive to the hospital on a regular basis for some sort of treatment?  Buy them a gas card, no matter how small.  Do they eat food? Get them a gift card for a grocery store near them (google their city, and you’ll know which is prominent).  If neither of the above two options are good for you, you can always choose your favorite restaurant/bar/movie theatre/yoga studio/etc and get them a gift card, or even just mail a check.

What I’m saying in all of the above is this:  it is hard to ask for help. If you are a guy, it’s damned near impossible.  We guys are socially molded <molded sounds too passive, but beaten sounds too violent> to never ask for help, to deny it when it’s offered, and to be shamed by it when it’s given, so that we need to simultaneously apologize and thank you multiple times while it’s given.  It creates a dynamic of power that is awkward and painful at times.  If you feel called to help, then help.  

Patience cannot be undervalued.  I have never been a patient person.  I give gifts early, or spoil them. However, the medical experience demands patience.  It cannot be rushed.  Amie is going to do well, or do poorly, on any given day.  She’s going to have days where she stares at the wall for 60+ minutes straight and refuses any change of activity.  She's going to have days where she wants to be snuggled for several hours straight, and not want to do anything else.  She doesn’t care that you have to pee.  She doesn’t care that you’re bored.  She just wants to be held.  Slow down.  Be in the moment.  Stop caring about what else you could be doing.  Stop.  Be.

Not working is hard.  This is the one that is most likely to blow you up, to make you go cray-zee.  As a teacher, and one that works my butt off to have good relationships with as many students as possible, I get a LOT of positive feedback each day on my work.  Kids say things directly to me, or they say things to each other, or they write things to me…and that’s the fuel that I use to keep going each and every day.  

Once I disconnected with that, stopping working on Halloween, I lost all of that.  I also lost the camaraderie of the teachers that I talked to on a daily basis…whether it was my ridiculous commentary with Tracy and Tracy in the hallway this year (or just Tracy last year), my jokes with Shannon, or any other silliness in those 4-minute pops that we have to bolster our sanity.  

But more than all of that, I lost the structure of the daily grind, and gained a LOT of introspective time to flip things around in my head and ponder possibilities.  Some of this is fine.  I think about how awesome it would be to hike and camp in Glacier National Park again, and maybe see a moose or grizzly. OOOOH Coool!  

But I also get to ruminate on the other side.  The awful side.  The collection of grizzly and brutal possibilities that could happen, and fill my nightmares and wakeful hours at times.  There’s a beauty and peacefulness that is found in meaninful work, and not having that, not having the teaching….is sometimes hard.

People are good.  We have always loved the Life is Good shirts/hats/etc stuff.  Its way too expensive, but it’s also really well made, and is a trade off.  Part of that motto, deep down, is that life should be celebrated.  I’m not saying that in the “pro-choice/pro-life” debate, but in the love what you’ve got while you’ve got it kinda sense.

People have been overwhelmingly kind and generous to us, in an infinite number of ways.  Whether it be in things made, gifts given, gift cards purchased, money donated, checks written, or time spent…people have been overwhelmingly kind to my family.  That might be because I’m so charming, handsome, and dashing………………………. or maybe just that they feel called to do so by the pain they witness, or that they want to wade in and help.  To that, we say thank you, eternally.

So.  On this New Years Eve, I reach out and shake each of your hands, give you a hug, or a high five, to this coalition of strangers, friends, and family to make 2015 a year that is better than this.  I can’t say better than I have, because that would discount what I have now.  Amie is happy, except for when she’s not.  Amie is comfortable, except for when she’s not.  I have to push myself daily to remind myself of this, and to always remember the peaks, and not the valleys.

Have a great New Years Eve, and maybe even make a resolution to be a little bit more kind, a little bit more generous, and a little bit more awesome to the people in your lives.  I guarantee it’s worth it. 




See you in 2015.