Wednesday, January 16, 2013

Broken but Unbowed

Humpty Dumpty Sat on a Wall
Humpty Dumpty had a great fall.
All the king’s horses and all the king’s men
Couldn’t put Humpty Dumpty back together again.

But really, would you ask a horse to fix something you broke? Does that seem reasonable in any set of circumstances? I mean, they don’t even have fingers, just hooves.

Pondering broken things today.

I don’t like broken things. Who does? Well, with the exception of piñatas. Those are more fun broken…although an argument could be made that piñatas are even nicer when they are intact, all colorful and papery and full of the promise of delights. Sometimes when you break one you realize that there’s only a bargain candy mix inside, full of generic brand hard candy and stale tootsie rolls. Ew.

This week we’ve faced a few broken things here, some big, some small, and I’m left wondering how one fixes the unfixable—or really, how do you make peace with the unfixable?

This isn’t really a rhetorical question.

In taking down our Christmas tree, one of my favorite ornaments got broken, the only real ornament disaster we had this year, aside from the $1 craft store sculpey Santa that the dog ate…and the Rutgers R I had made for my spouse one year (also eaten by the dog) . The ornament that broke was a Chilean nativity, a tiny clay ornament that crashed down when one of my children barreled past the tree while we were un-Christmasafying things.

yeah, no roof for His head is right. Meh.
Of course I peacefully said, “that is ok, child, do not worry about breaking one of mommy’s very special nativity collection ornaments”. Of course that is what I said.

Excuse me one moment while I find a fire extinguisher to put out my flaming trousers. Ahem.

I know I can probably super glue it. Maybe. I will try, but it makes me so sad to see the little pieces all over. Definitely NOT calling a king’s horse for this one.

Over the last few weeks and months I have also realized (again) that trust, once broken, is nearly impossible to repair, especially if the breaker of trust doesn’t seem to give a flying wahoozie about making amends. This weighs quite heavily on me these days, because in some cases this realization carries a weight of personal responsibility on its broken back. I can’t quite figure out how to make peace with this—as much as I am a snarky cynic, I do trust people, or I want to, and then smackaroni and cheese ends up all over my trusting expectations. Sigh.

And when I have a responsibility for the way someone knows how to act, it is heartbreaking when trust is broken and broken and broken again and again. How do you even begin to make peace with what you cannot fix?

And finally, in our scary horror film parallel universe, the Desperate Valley of Onco-land, we learned again this week that brain tumors cause damage. NEWSFLASH! Ok, to clarify, when tumors grow catastrophically after years of stability, they can still find new parts of the brain to hurt. Still…NEWSFLASH?

When you are in crisis mode, ie Stop the Tumors From Growing! mode, other issues kind of fade to the background. It is only in the relative quiet of stability-in-progress that these issues have room to hiss at us.

Many parts of the brain, once broken, can’t be fixed.

This is a sobering reality, one that sinks in during the hours AFTER the initial meetings full of reports and bell curves and diagrams and percentiles and doctors soberly saying things like "this can't really be compensated for", meetings that follow other meetings where the delicate balance of brain chemistry is always at the forefront of discussion.

The report is intimidating even before it comes out of the envelope. Double meh.
There are strategies, and techniques, and certain things that can help address the broken parts, but some things just can’t be compensated for--as per sober doctor in super cool tweed suit.

That thud you heard was me getting smacked upside the head by reality.

So yes, this is unfixable—but countering that reality in a cloud of neon animal print and an obsession with American Idol is the reality of a kid who is, without a doubt, “one tough cookie”. She isn’t defined by statistics or percentiles or reports or even by my fears. She is the fix to  her own unfixable, in a lot of ways.

The obstacles are real. The struggles ahead, no joke. But I have to try and draw some hope from the reality that my kid IS a tough cookie. She doesn’t need kings and their horses or men to get her through—what she NEEDS, I can try to give her (or advocate--er, nag, demand-- for other people to give her)—love, support, and some extra heavy duty reinforced wings for flying.

I may not be able to keep her from falling and falling as she tries to stay on the wall with her peers…but I can keep helping her back up, I can make the wall sturdier and wider. So much of what she faces is unfixable, and I have to make peace with that (again. Yes, again.) But unlike broken trust, or even a broken ornament, the unfixable here just leads to another path. We just have to figure out what that path is, what the best way is, and then try to ease on down the road with a song and some super glue.

Who knows, maybe once the king’s horses and men realized they couldn’t put Humpty Dumpty back together they just made a giant omelet or something. There is always a solution, even if it’s not the one anybody anticipated. I have to find hope in this.

Although now I’m a little bit craving an omelet…

Friday, January 11, 2013

Just Another Pic on the Wall

still standing! ish...

So the 3 Kings have come with their presents, and Valentine’s Day decorations are popping up in stores large and small. Most of our post-Christmas returns have been made (except for one sweater that the saleslady convinced my spouse to EXCHANGE instead of return…I guess he’ll be going back to Sears, the sweater still doesn’t fit quite right), and even the mega-stash of cookies is down to a manageable 4 Tupperware.

But my house still looks like Christmas.
Santa Claus REALLY comes to town at our house.

Ok, so it’s January. And yes, the prickle-fall of the tree is starting to become noticeable, I know that this weekend the tree and most of the Nativity sets might have to get put away. But my wall of Christmas cards is going nowhere.

And not just because the wall is kind of structurally important, I mean the cards fun-tacked to the wall are staying.

There is something about seeing all those smiling faces that makes me happy. So many of the cards this year are casual snapshots or collages of family pics. Ours certainly was, mostly because I couldn’t get all 3 kids and dog to look in the same direction in any single picture. I love seeing these moments in the lives of people we hardly ever get to see.
To quote that Master of Verbiage, Billy Crystal," You Look Mahvelous!"

I have mentioned our shrunken social circle before (like shrunken heads but not grotesque, just unusually small), between family moving away and friends moving on and our own post-brain-tumor reclusiveness combined with kids getting older and thus busier, we are like Hermits of Suburbia. So getting those cards full of pictures of people we never get to see is a joy.

Some folks on the wall are family far away, some of whom we haven’t seen in years, but we  always vow that We Will Get Together With This Year! Some are old friends from college and before, with kids galore that all look like mini-versions of their parents. Those cards are cool. Some are friends we have only briefly met through brain tumor or NF work. Pics from the beach, on Santa’s lap, on trips or in the yard…the lovely crowdedness of the wall just makes me happy on these gray January days.

I know, too, that this isn’t REALLY like having contact with people…my wall o’ cards is reminiscent of the concept of facebook “friends”, the 400 people you allegedly are close to. But you know, those facebook friends (ok, not hundreds, I admit there are folks on the friend list who are more connections within the support communities we lurk in than friends), a lot of those facebook friends ARE real friends, people I know are there for us at any hour of the day or night (the benefit of having friends in other time zones, it’s always daytime somewhere!). So my card wall is maybe only a point of connection, but it makes me inordinately happy…like a little “hey, we didn’t forget you, and you didn’t forget us, even if we never see each other! Huzzah!”

That said, I do have some guilt, as I realize that my mental card list never fully translated into my ACTUAL MAILED card list. I have about 5 people I feel awful that I never actually MAILED THE DARN CARDS TO, I don’t know what happened, I seriously still have those cards here—to Deedy, and our Lake George friends, and other bt/nf friends…sigh. I am sorry. Maybe I will wite-out the “Merry Christmas” and put “Happy Groundhog’s Day” on our cards and mail them in a few weeks.

ok,  I figured out the issue I was having with photo uploading.
So  behold, a picture of Wite Out!

Heck, if I did that on the wall…just taped over the holiday greetings with seasonally appropriate woohoos, that crowd could keep smiling at me all year, right? ;)

So thanks, card sending folks, there is particular joy each time we add another pic to the wall…for in each of those we feel a little hooray from each of you. And the wall of the Hermitage is looking pretty snazzy.


Friday, January 4, 2013

2013: Of Pinterest and Pollock

2013. Whoa. Cue Momentous Music or whatever seems appropriate for the dawning of a new year.

Ok, the dawning of a New Year Camiolo-style, aka 4 days later than the ACTUAL dawning of the New Year, with some Appert-style worrying about not having started on time thrown in.

I am determined (not resolved, that would be doomed to failure) to get my rear in gear on the blog front and actually keep writing this year. I have some things planned…

I know, it’s been a month…but Advent and chemo and tragedy in Connecticut and school and cookies and trees and family love and family avoidance and stomach bug collectively conspired to leave me wordless.

I so aspire to be all Pinteresty, all lovely little thumbnails of creativity in tidy rows of inspiration.

(imagine lines of lovely things here, all ice cream sodas and hand-batiked saris and shelving for powder rooms made out of antique farm equipment and little girl dresses woven from vintage grosgrain ribbon. Pretty, right? Enjoy the tranquil beauty...)

Ok, come on back now.
Unfortunately, most days my brain feels like this, all Jackson Pollocky:

Jackson Pollock was the Man.  (from

So maybe in 2013 I will just try to go with the Pollock-like flow.

Ok, I know I won’t. I know I will still try endlessly to get my life, my brain, my world into neat Pinteresty lines and soft-lit photos. But maybe this year I can try to be ok with the Jackson Pollock (who honestly I do love), and celebrate that that is just how it is in my head.

One of the best things I ever read comes from Gretchen Rubin’s The Happiness Project. She talks about resolving to Be Gretchen…that is, to just be ok with being who she is. She lives in NYC and does NOT spend her days munching on exotic cuisine or wandering through galleries and all that NYC has to offer, and she felt unsettled by her lack of metropolitan-ness, but finally realized that it was OK TO BE GRETCHEN, a homebody who loves her neighborhood and is generally satisfied to stay close to home with her husband and kids. Not only is it ok, it makes her happy, and as such becomes an important life principle.

Maybe this year I can try to get PAST pondering that insight to that point of being ok with NOT being Aretha Franklin (ok, that is going to be hard), ok with NOT being outgoing or organized or full of chutzpah, with loving fashion but generally ending up in yoga pants and a t-shirt. As a side idea, maybe I can really MAKE TIME for those things that I love, even if they are not huge or earth shattering, things like painting or visiting historic sites or just going for a walk. MAYBE if I spend less time bewailing my un-Martha-Stewartness and just be my neurotic, creative self, the year will be be happier in spite of the Medical Elephant that is hogging our beat-up couch.

How great would it be for my kids to have a mom who isn’t always trying to be a better version of someone else?

except Aretha. It would still be cool
to have your mom be Aretha.

So while I still feel a little bit like 2013 is a freezing cold pool that I only want to get into one toe at a time (or, more accurately, kind of just want to stare at from the warmth of a beach chair), I do have some thought that maybe, one step at a time, and with some special things planned (happy anticipation is awesomely therapeutic), we can keep moving forward.

Heck, maybe eventually I will actually join Pinterest and line up Jackson Pollock images I like. Hah!

So Happy New year, friends…and  anybody else have any New Year Determinations? Random love of Jackson Pollock? A beach chair?