Enter Reality, Stage Left...

Well then.
Two blogs In The Same Calendar Month, full of promise and resolve and perhaps a little bit of this:


la la la la laaaaaaa!

Yes. I was wearing yellow in those blogs, free of my high school friends agreeing that yes, yellow makes me look like a dead fish. And I can leap and dance and leave a trail of rainbow sparkles. Yup.

So then I hit post, and as if on cue, my old buddy Reality showed up.   He has lots of eyes and tons of grippy little arms and teeth. Oh yes, he does bite. Ahem.

My buddy, Reality.
He can do all the hand motions for YMCA at the SAME TIME, but that's about his only positive attribute.

Sometimes being positive and proactive is really, really challenging. I find that the challenge increases in direct proportion to me stating publicly that I’m going to be positive and proactive. I guess it’s like saying to the world “I AM GOING ON A DIET!” and then going to Costco at Free Sample Times when every sample is deep fried or sugary cream filled goodness. Or both. Alas.

I promise that this isn’t going to just become a weekly dose of existential crisis.  I just know when I read really positive proactive cheerful blogs I generally have a moment of whoa. That person has it so together. I JUST WANTED TO ELIMINATE ANY CONFUSION ABOUT THAT HERE. So. Not. Together. I figured I should acknowledge that post my blogging of light and energy and huzzah, Things Hit the Proverbial Fan. Those things were not smiling stars, those things that hit the fan. Although really, they’d stop smiling pretty fast if they whomped into the Vortex Windtunnel Fan-tasmic .

This week was way full of the Reality that tends to shut me down.

 

Trying to practice "don't let the perfect be the enemy of the good"...so this pic is blurry and rushed--and posted, not procrastinated. But this is how it looks. And yes, that is actually what I'm wearing right now. Sans actual green guys.

Work, home, medical yikes (scan week for my baby, who is WAY old enough and WAY observant enough to get that scans Don’t Always End Well--although thankfully, hers did end well), devastating medical  news for 3 friends of ours, heck, even a lot of rainy days…this week was way more Boo than booyah. Waaahaaaaay more boo.

So the question becomes What Do I Do when my ol’ friend Reality crashes with my attempts to change the reality of my responses?

I have to admit I did finally open my Cadbury balls and yes, there was at least one brief marathon of Hoarders watching. BUT I have also tried in those moments of intense anxiety or frustration to breathe. Just. Breathe. To try and focus. To try and NOT jump immediately to scary (harder than you might imagine. Ergh.)

Baby steps. It’s all about baby steps, even if those steps are sort of tangled up in my many armed friend (who never travels alone). 

How do you all deal with intense stress or chronic stress/frustration situations?  I have tried slightly reducing my caffeine again, I am still exercising (4.1 miles run today! Woo! Only possible because of midterms at school, but I’ll take it), I am trying to read cheerful books, I am trying to breathe and pray in those moments of Tripping the Ugh Ughtastic. But what do you all do? 

Reality is with us, too much sometimes. Some people carry Reality so gracefully, not like my zombie shuffle. What is their secret?

So the truth is out. The rainbows end somewhere. But really, I guess THAT is where the work begins.

And I still have more Cadbury left—voila! the stars are smiling again. ;)

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…

TV Pitch: What Not To Say!

Television Pitch: What Not To Say!

So I had a block of time yesterday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” . I don’t know if Clinton and Stacy from TLC’s What Not To Wear will be available, but I have a couple of fabulous sisters who could likely stand in as hosts. Their job would be to swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be released back into the wild, er, go home, and be better prepared for the next challenging conversation with someone who is being smote.

I don’t mean people who are just obnoxious: I am talking about situations in which truly, there is NOTHING good to say. Some things really are so big and challenging and yikes, there just are no words to answer the alas—and I think people dealing with a massive crisis appreciate that. It’s almost unfair to think that anyone can have a CLUE about what to say. But sometimes even things that are meant well are just said epically wrong. Some things that truly just shouldn’t be said.

Other families dealing with crisis might take issue with my list. I respect that. This Magnetom inspired collection is reflective of our family experiences and my personal biases. As I go along, if anyone wants to add THEIR input to the list, please do!

So here’s part one of my quick and handy guide for the public, in case my show does not get picked up by TLC. Also included (BONUS!) are things TO say…also based on family experience. Thank you, friends…

First WHAT NOT TO SAY category:

Horror Story! Aka “Who Told You You’re Allowed to Rain on My Parade?”

a. “My Uncle Clem had (insert catastrophe of choice), and oh my gawd, it was horrible! His hair fell out, he couldn’t remember Aunt Tildy’s name, he walked into walls, the medicine turned him purple, and then he DIED. It was awful!”

I have NO IDEA why folks feel like someone dealing with a catastrophe is served by hearing about the Woes of Uncle Clem. If you know someone who died horribly after the same catastrophe your friend is facing, keep it to yourself. Really. It’s not motivational. It’s not a common ground that ANYONE wants to share.

Knowledge is not always power. Sometimes, ignorance really IS bliss, and if Uncle Clem spontaneously combusted while battling what my kid has, I truly don't want to know. That knowledge serves no purpose other than to drive a parent one step closer to insanity...which is a short walk sometimes, mid-battle.

In a similar vein, moms with kids should NEVER tell newly pregnant ladies about their labor horror stories. I don’t. Heck, I try to avoid telling them my pregnancy horror stories. The world needs to be populated. These stories don’t help.

WHAT TO SAY: “Hey, my Uncle Clem battled (insert catastrophe of choice). It was a tough road, but he’s doing great!”

If you have battled THE SAME catastrophe, feel free to share hope! Hope is slippery, and folks mid-battle can always use more experience-based hope.

b. “Well, side effects take a few days to show up"

Yes, there is some bias in this one, since someone said it to my cheerful 13 year old last week as she was bubbling with enthusiasm over successfully starting her new chemotherapy and NOT feeling instantly hideous. Her relief was palpable. This person rained on her parade. I have not yet crossed paths with her, but I will be sure to carry an umbrella.

YOU NEVER NEED TO BE “THE VOICE OF REALITY” FOR SOMEONE BATTLING CATASTROPHIC ILLNESS, ESPECIALLY A CHILD. I assure you, even a kid knows that what they have is serious. They know what reality is, because after your one sentence smackdown of their hope, they have to go live the rest of the days and weeks in the reality they are in. They still have at least 180 doses of that chemo before we even get to check if it’s working. They hang out in oncology clinics. Strangers stick them with needles and poke and prod them and talk about scary things while you are back getting groceries or whatever normal life you have. You do not need to be someone else’s Voice of Truth. Really. That’s why we have doctors and WebMD.

Only kidding, just the doctors part. Ahem.

WHAT TO SAY: “I’m so glad today is a good day for you.” See? That’s not hard, right?
OR: “I’ve heard that hospital is really great”…
”just read that a lot of research is being done in (insert catastrophe of choice)”… again, foster realistic hope!

Stay tuned : More this season, er, week, on What Not To Say:

Merely a Flesh Wound!

I Thank God Almighty I am Holier Than Thou!

And Normalcy is Not a 4 Letter Word