Thursday, March 27, 2014

Of Olympic Sweaters , Tutus, and Running


So while the first 2 blogs back were written with energetic new year enthusiasm, this one was more like pushing an air conditioner up 3 flights of stairs. You know you have to, but oh, it is so heavy. This has been written for more than 7 weeks…but today I needed to revise and publish in light of Self Magazine mocking a brain cancer survivor in progress for running in a tutu, placing tutu wearers on a “BS Meter” as perpetrators of a “lame fad” .   Yes. I needed to revise & publish today.

Did you see the official US Olympic opening ceremony uniforms? Way back in February...did you see them?

They are all the greatest kitschy moments of early 80s nouveau country patriotic chic rolled up into one Flagtastic knit celebration of a sweater.  If they had a faux Amish child or a goose with a slate blue bonnet, they would be an absolute time capsule.

They are awfully awesome.
Everytime I think about them, I chuckle.

And you know, as much as I chuckle about them, even now, nearly 2 months after the opening ceremonies, I see Ralph Lauren might be a genius.  As every other country came in to the Sochi arena in variations on svelte athletic clothing ala a Nike showroom, the US contingent came bounding in with jubilant energy, making a Great Entrance in that Fandango of Flagtastic Fabulosity.  There was NO mistaking who the US athletes were.

Admittedly, I kind of like weird clothing. For someone who wears black yoga pants and a plain fleece of some sort most of the time (or conservative and serious teacher clothes), this might seem improbable. But I find funny clothes weirdly empowering.

When I ran my first half marathon (and second and third), I had to wear the argyle skirt, and a blingtastic headband. And armwarmers that say “If Found On Ground, Please Drag Across Finish Line” .  
I might not be fast, but my clothes are FESTIVE.  Same thing for the Turkey Trot this year, I wore a Turkey on my head. Santa 5K? A bedazzled t-shirt and a Santa hat.  Had to do a last minute number at our Coffeehouse last year? I pulled out an Uncle Sam hat and I was good to go.

And you know, these silly outfits make people happy, which is contagious. Happy strangers yelling, “HEY, great skirt!” as you shuffle by, or “Love the turkey!” as you sip from a plastic cup at a water station…well, it just makes me smile (and in the case of running, forget just how unpleasant running often is).



In hindsight, I think Ralph Lauren secretly knows this Power of the Somewhat Amusing Outfit. Make your competitors laugh so hard that you get a head start? ;)  Of course, when the Amusing Outfit is used to represent your country, and worn by like, 400 athletes next to you,  that makes a STATEMENT, but…those sweaters (and their matching hats) are so awfully awesome.  I am REALLY hoping one ends up on clearance somewhere. $595 is just too much.

There is something very freeing and empowering about Committing to Silly Outfits.

I have only just started to be open to this kind of commitment in real life.  Ok, so a LONG time ago I had an embroidered Alice in Wonderland Disney shirt I wore a lot .  And I did wear a paper American flag in my jacket lapel for years. And ok, so I wear a Squid of Power named Sassafras and a small silver elephant named Rodney.  And I do love things with crazy patterns, when I’m not wearing variations on black.  I get you, Ralph!

And after seeing the brouhaha which erupted today after Self magazine mocked runner Monika Allen for wearing a tutu in the LA marathon…  (read the story here)I am realizing more why silly clothes matter.

Self has kind of apologized. Ish. Mostly because Monika is a cancer survivor in progress, she ran that marathon in that “froufrou” (Self) tutu WHILE ON CHEMOTHERAPY. And she makes those tutus for Glam Runner  www.glam-runner.com, to raise money for Girls on the Run, a group dedicated to getting 8-13 year old girls out and running and making healthy choices.  The editors of Self (helped by the viral ire of facebook and the interwebs) have sort of realized that maybe they were jerks.

But they don’t seem to understand that their jerkiness goes WAY beyond the fact that this mighty lady in the Wonder Woman shirt and tutu is a cancer patient and works tirelessly for young women.  By snarkily commenting that the tutu wearing runners are part of some BS lame “fad”, the writers at Self place themselves firmly in the middle school shallow hierarchy of Cool As Defined by Someone’s Narrow Version of What You Should Wear, or how you should look, or how you need to present yourself to be able to participate fully in life.

THAT is what they should be apologizing for.

I just spent several days substituting in middle school.  Trust me, the shallow hierarchy of cool really should Stay in Middle School…as I beat a hasty retreat back to high school. Phew!

See, I’m a little sensitive because I carried my lowly place on the hierarchy of cool with me for a long, long time.  Let’s just say that a gangly, weird haired, glasses wearing, uber Caucasian, freckly gal who likes musical theater and sci fi didn’t quite have a place on the ladder, if you know what I mean.   And people were not afraid to let me know that I looked like a nerd. For years I let my insecurities about my appearance have way too much of a hold on my brain. 

For a long time those insecurities kept me from trying to run. When I did start running (as a 37 year old!), I ran on a field where no one would really see me….in long baggy capris and a big t-shirt, trying to camouflage my out of shape-ness.  It took a long time (and some helpful reading) for me to realize just by TRYING to run I am a runner. What I look like is irrelevant; on race day real runners (ie anyone at the start line!) don’t care. Nobody cares how you look! 

Freedom!

But  sometimes, occasionally, that lying beast of ugly rears its head again.

I’ve always had more clothing hang ups than your average telemarketer gets during an 8 hour shift.   
1.      Until I was WELL into my 20s I would not wear sleeveless shirts, because my arms were so white, and freakishly long.
2.      I wouldn’t wear flip flops or sandals because my toes were weird.
3.      No yellow, I look like a dead fish.
4.      I thought I was an extra large until I was about 25… clothing I bought as a freshman in college I wore just before giving birth to my first child.  (I’m not teeny, but XL was camouflage, plain and simple).
5.      EVERYTHING I wore had to match match match. Perfectly. Like, socks, underwear, pjs…perfect match, or I’d be really uncomfortable.
6.      Yes, I was insane. And I wonder why my kids are so OCD?

This all made SO MUCH SENSE back then. But really, it was just about fear, somehow. Control. Controlling how people saw me. Being invisible or something. Whatever. It’s ancient history.  But not so far off from what Self magazine implied in mocking women who wear tutus to run.  We need to squelch joy. Real athletes don’t wear tutus.  Lame. BS. Snarkysnarkfest.

Again, MY BS Meter is going crazy.  Get me a tutu, QUICK!!

I’m glad to say I got over the sleeveless thing, I’m uber-Caucasian, so what? And eventually the sandals thing (I remember my first pair of sandals, I was so nervous about wearing them, and they were fisherman style, my toes were still invisible).  Now flip flops are my friend ALL summer, and I LOVE sandals.  
I even bought a gold sweater last year. I still probably can’t wear true yellow super well, but I might try, why the heck not?  And I try to wear things in the size that fits, whatever that letter or number may be.  Insane-o-matchy? Done. It’s too much energy.  I consider a day a win if I remember to wear matching shoes. Like, shoes that Match Each Other.

one needs a feathered headband for chemo day (2013)
Funny, too, because my second born loves sequins, animal print, neon…all fashion that screams HERE I AM!!! I think some of this is due to her visual impairment (she can see this stuff), but some is because she has ZERO hang ups about clothes. She does a happy dance any time she finds an outrageous piece of clothing to wear.   I can only get her to try ANY athletic thing by promising blingtastic fashion.  Win!

I feel like Ralph Lauren would appreciate my G’s enthusiasm for color and pattern, even if he cringed a little at her penchant for neon.  She is always true to her own aesthetic, never caring a blip about what others think.  But based on Monika Allen’s experience, I know Self magazine would not approve of G’s ebullient style. And THAT is what they need to apologize for—for limiting women. For saying we win a space on the BS Meter for NOT meeting Self’s  narrow definition of what athletes are supposed to look like. 

Real runners know that it’s NOT what you look like…it’s what you DO that makes you a runner. One foot in front of the other…you  ARE a runner. Walk breaks? Still a runner. Cramps and have to stop? YOU ARE A RUNNER.   

Mile 9, finally heading back to Philly...Rock n Roll Half Marathon 2013.
And I never put up pictures of myself. But today, I am.
Note my festive skirt. And it does make me go faster, Self Magazine. Each year I've worn it
I've shaved 2 minutes off my time--and I'm not getting any younger. snapSNAP.


Your outfit does not make you an athlete. Heck, I wore track pants for years before I ever exercised. I felt very legit as I sat on my couch. J 

And really, running is one of the most inclusive sports out there. All you have to do is show up and move. Fast or slow. Just show up and try to keep moving. Nothing else matters.  You CAN do it. Shame on Self magazine for taking a moment of celebration and mocking it because it's not how the "cool" runners dress. Kudos to Ralph Lauren for celebrating the fun and humor and joy of athletic achievement. If the greatest athletes in our country can rock out in Flagitudinous Fashion, why the heck can’t we everyday women trying to run rock a tutu?

So I will be procuring a tutu for my next race (yes, I can’t help myself, I know I’ll sign up again), I will speak out in support of the Glam Runner ladies and their awesome efforts to help girls have a truly authentic healthy self, and I will keep looking for those Olympic sweaters & hats on clearance at TJ Maxx.   Heck,  I kind of hope I’m NEVER on the hierarchy of cool, if cool is defined as bland conformity.  Bring out the sparkles and the super hero t-shirts, and let’s run on!


**As a side note, the Tutu Wearing Guy we used to see in Philly tended to finish the race in 1:30.  If that's not legit, I don't know what is. So guys, you can wear tutus, too. :)


Wednesday, February 5, 2014

Another Perspective


Another perspective.

So…I have to blog something that I know people will disagree with. I have to, because I teach my 12th graders to speak out, to not be cowed by public opinion when there is something they believe in that needs to be spoken.


Today I saw something that made me think, and realized I have to practice what I preach. Ugh.
Seriously, I've had a silly blog written for 2 weeks and haven't posted it. Ugh. But this...just wrote itself.
So please, if you read this, just hear this as a different perspective. Not a judgment, not a rant, just a perspective that I think sometimes is missed…a perspective that comes from my faith tradition, but also from my role as mom to two NF children, one with a moderate case, one with a severe case, wife to a man with NF, and advocate for kids with NF.  Everything here really is meant to be said with great respect and lack of judgment: if it comes across otherwise, please forgive my clumsy use of language. I truly just want to present a perspective that isn’t always spoken.

And I get that people may very well have the opposite opinion. That's ok.
Can you tell I hate stirring the pot? sigh.


Anyway, I saw an online article today about a family that used a new technique called pre-implantation genetic screening before  IVF to make sure that they had a child who does not have NF.  (Boy-born-free-of-potentially-deadly-gene-thanks-to-IVF-screening)Embryos were examined, and the one eventually implanted was found to be NF free. The family is very happy with their child (which makes sense, children are a huge blessing, and this family obviously thought long and hard about how best to have their family). Doctors are pleased that the "controversial" selection process worked so seamlessly.

And I felt...uneasy.
I just felt troubled by this process, the selection process, I guess. Because where scientists see NF the disorder FIRST, I see my NF children, children who by this process would not have been born.

I get it, I do, the fear parents have when one has NF, the knowledge that even a parent with a mild case can have a child with a more severe case. I have that t-shirt in blue, pink, and purple.  And I understand, heck, I work very hard to fund research to make NF NOT destroy my children.  We’ve had some close calls in this house.  Really close.

This week was MRI week for my child with the severe case of NF. We compared this scan to the one that showed massive tumor progression in an inoperable location in May 2012. I get how bad NF can be.
And yes, my children have endured suffering. This is the worst part of parenting, seeing my children suffer—but I also see them thrive, and succeed, and bless others. I see them laugh with friends, sled down a hill, go to school, dance in the Nutcracker…heck, my second born danced in the Nutcracker (in the way she does) 4 days after brain surgery.  And when she was up there being a Lead Gingerbread, her hair carefully arranged over the surgical incision, and with all the little kids twirling around her, I didn’t see NF. I saw my child.

Yesterday my youngest got her back handspring alone for the first time. I saw my child, not NF.
When our little buddy calls for G to help him with his chemo, even DURING HIS CHEMO we see this riotously funny and spunky kid, (and often his cat), NOT NF.

When G’s friend pins her latest nail polish design on Pinterest, we see a hugely styling and creative kid, not NF.


When a friend out west sings his heart out at karaoke, we see a boy with the voice of an angel, not NF.
When we hung out with our friend Sandra, we laughed, we watched Sponge Bob, we ate ice cream, we saw her amazing heart and spirit in everything she did, even as NF took her from us.  We saw HER, not NF.

All of these children…well, that’s what I see. That’s my perspective. 


There’s no such thing as life without pain. Well before I had heard of NF, LONG before I could spell it, I had pain in my life. Much of my own life journey has been trying to focus on the joy in life. My children are joy. Ok, they drive me insane, too, but really—their lives better the world. And they love life.
At teacher meetings this year, my youngest daughter’s teacher told me this: that my R had said that yes, sometimes NF and brain tumors are hard, but because of them our family has gotten to meet such wonderful people, such kind and amazing people, such great friends.  Her teacher got choked up telling me this, and honestly, I was …well, what do you even say to that? A few weeks later at home my R said the same thing to me, her head tilted to one side, her crazy hair loose around her face. “We are pretty lucky, mom, we know so many great people because of NF and brain tumors.”

Yes, we are.
An NF mom once said to me that her NF child sometimes felt sad when he saw the tagline END NF. He took it personally.  I think that’s kind of the same moment here—I understand why families may want to make this choice, and I do not judge them for it—I just see this through the lens of a different perspective—I see MY NF children as not making the cut in this process.  I would hate to have lost them to NF before they were even born.

And while we will NEVER stop working for better treatments, for more research, for a cure (my brain is dizzy some days from reading about MEK inhibitors and bRAF this and that) —we hold on to this perspective that sees the person first: with all that may entail, the unique, amazing, mighty, funny, loving, compassionate, persevering kids and adults we know and love…and the disorder second.  My husband has said that his experiences with NF have made him the man he is today—one who never judges by appearance (EVER), one who is always ready to help, to lend a hand, to show compassion, to work hard for his goals.  I hope and pray my girls get to grow up…and be like their dad, and the other amazing NF grownups we know.
That said, I better go work on stuff for our next fundraiser, our Coffeehouse for a Cure…FOR NF! 

Thanks—I know folks may vehemently disagree with me, and I respect that. I hope that folks can respect this perspective too.
 

Thursday, January 16, 2014

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. ;)

Tuesday, January 7, 2014

Baby Steps


So, I have returned.
Thank you to all who were so encouraging last week about my return to wordsplosionness. I do appreciate it more than you know. Seriously. Thank you.

And I have learned, in the last week, that as soon as you decide to Let Go of the things that bring you to constant yikes, those things SWARM like locusts upon thy house.  We had locusts in Jersey this summer. Nasty, nasty, nasty. Thank God our house is in a former corn field, 17 years ago there were few trees here for locusts…but we know by the end of the locust fest they did find our yard.

Note to self, move from this location before 2030.
Anyway, yes. I have been trying and trying to keep SAYING my non-resolution resolutions, just to remind me (and sadly, anyone within earshot) what I am trying to do. Be creative. Be with the people I love. Don’t get sucked into stupid. Breathe. Appreciate each moment.

So this has been a week of baby steps, and not just because it was super icy and walking the dog was somewhat like waterskiing.

But I have had a few little moments, and in an attempt to not just sink back under the swampy whatnot, here they are.
I have run just over 6 miles this year! Yay! And it’s still January!
(ahem. Normally I can’t say that until June. ;)  )  I know that whatever I decide in terms of running this year, whether I go for ½ marathon #4 or not, I will be WAY more peaceful about it if I try to keep up at least a 5k a week. I won’t have that despairing feeling of “aaaagh, I need to start again!”.  If I can keep up 3-6 miles a week, when I have to start adding distance in the late spring /early summer it will still stink (realities, people), BUT I will have eliminated the first and extremely daunting mental hurdle.

I tried a new recipe last night, a breaded pork chops with a creamy sauce that I found on All Recipes and tweaked for my family’s taste (ie no cream of mushroom soup) .
 I think my spouse may have licked the casserole dish clean when I wasn’t looking (because he knows I rebuke him if I catch him doing that). My picky girls liked it. The teen son inhaled some and went back to Xbox, I figure that means he liked it. Even the dog liked the speck we gave her, but she eats poop, so her vote doesn’t really count. But this one was a tasty little moment, and I felt good about taking the few minutes to look up something new.

  I signed up for Pinterest.
I know, how could I NOT have already done this? I guess I was intimidated by my impressions of Martha Stewart-esque creativity I can’t even get organized enough to look at, let alone replicate. And I know  myself too well, adding a way to waste more time is likely not a good idea for me. BUT I am thinking that if we avoid disaster in the next few months (truth alert: kind of terrified about the next few months) we will have a Big Birthday To Celebrate here, a Big Birthday that falls a month before a Big Survivorship Date.  I am afraid to even speak that, I know how quickly things can change. But I am trying not to live in the fear that is our constant companion here, I am trying to hope. And in this case, hope means pinning pink animal print sparkle party ideas. Did you know you can just put festive duck tape over a water bottle label and then your party bucket of water bottles looks super festive??  J

In the same vein, I applied for an Icing Smiles cake for this Big Day. I was reluctant and afraid to do this, but then decided to just do it. Baby steps.

As a side note, I have always been very Sweet 16 is overrated, making an extravagant HoodlieHoo about it is just silly. But in onco land, EVERY FREAKING BIRTHDAY NEEDS AN EXTRAVAGANT HOODLIEHOO, and for whatever reason (maybe because Scan Days Cometh?) I am just embracing that this year in a different way.

I have made a few specific attempts to not plummet into crazy psycho lady at the drop of a hat.

Yeah, it isn’t all glowing cotton candy and sparkly DIY photo booths here. I am trying and trying to be more patient, to breathe before responding, to just let stupid go. I know some discussions are NOT helped by facts, so really, stepping away is just healthier. I know my G can’t help freaking out about schoolwork,  I just need to breathe and have her read the 9 pages of English textbook out loud so I can explain things to her as she goes along (thank God I teach US I, that’s really helpful for G’s American Lit class).  I am trying (try. ing. ) to stay peaceful with the more sluglike attributes of a college student on winter break in my house. (ok, WAY still working on that).

This morning we had an unexpected day off from school due to the ridiculous wind chill, and my girls came into my room (I saw zero reason to get out of bed early) and my G sat on the end of the bed, and R curled up beside me so she could reach the dog curled up by my leg (no. we do not let our dog on the bed. Never. Um, nope. Not at all. *from Chapter 3 of Oh How the Mighty Have Fallen for this Furball). I realized how pretty G looked in her pink pjs (the child can wear ANY color), and how lucky I was to have such a sweetie as my R who wants to come curl up by mom still… 

It is a work, being positive. But geez, the dividends are pretty awesome.
 

And p.s. wrote a blog entry (however anemic) within a month of the first “hey I am going to blog again” entry. Win! ;) 

Wednesday, January 1, 2014

Holding On and Letting Go


Happy 2014, all.

So I was kind of struck dumb like Zechariah after the word-splosion of May. Once I got through telling our story, and realized it was turning into The Wheel of Time (87 volumes and still not done! Seriously, the author DIED and the series keeps going!), I just couldn’t summon the mental energy to put any other ideas into words. This coincided with our early stoppage of chemo because G’s kidneys declared THEY were done, and ain’t nobody got time to argue with a defiant set of protein hoarding adolescent kidneys.

2 stable-ish scans since then, a new school year, new battles, old crosses, small victories and defeats here and there... everything I tried to write seemed stupid.

But it’s a new year, and I have to start making sense of things in words again. It’s what I do. It’s what I live for…to help unfortunate merfolk, like yourself…

Gah, no. Sorry. We did see Little Mermaid as a family in June. That was lovely.

Now, I am going to try again.

I’m not a huge fan of New Year’s Resolutions, I know myself too well, I break any resolution within 48 hours and then wallow in guilt for 2 months. So I more try to think of small steps I can take, or first steps towards tackling bigger things, stuff that isn’t all or nothing, but more a gentle progress that doesn’t create wads of guilt when I screw up by Saturday.

But over the last few months, I’ve really been confronted with my inability to let things go…and how many things I’ve lost my hold on.

I’m not referring to my sanity. I can hear what some of you are thinking, you know this, right?

Today I decided to start working on cleaning out my craft/office area, aka my Hoarders Studio.  My school papers are literally in piles a foot deep (ok, on top of binders and books and stickers I made and motivational posters and videos and a picture of a lighthouse that used to hang in my bathroom…not sure how THAT got in the pile). My old craft area is a fossil repository for things long neglected.

To start, I had decided a few weeks ago to throw away the giant lightbulbs I had hoarded. I saved them when I was doing craft fairs, I can see them as fat Santas (in fact I had made 5 fat Santas years ago, so I had a legit use planned). But I haven’t done craft fairs in at least 3 years, and these are a pain to paint…so I was Ready To Purge. Go me!

Then I moved on to fabric paints that I’ve had since my sisters were preschoolers (they are um, out of college), random dried out glue, sweaters with holes that I had planned to make into pillows, things like that. Easy Peasy.

And then I started in on my fabric drawers.

Yergh.

I have piles of fabric. Pieces big enough for clothing…a large piece of linen to make an 18th century style skirt for when I volunteered at the National Park (donate)…a 3 yard piece of wide wale red corduroy (ok, I saved that)….Lining fabric and fleece and flannel for a nightgown I never made for my daughter….Polished cotton to make sundresses for preschool girls. That ship has sailed. Sigh. But some of these I could donate, and that was ok. Some I saved, but I MUST use them soon.

Then I got to the drawer of small pieces…the odds and ends I saved for quilting projects I used to do, the bits of my now college age son’s Easter pants when he was a toddler, fabric from 6 or 7 year’s worth of Easter dresses I made for my second born, bits and pieces of days gone very much by—days before. Like, BEFORE. BEFORE the Elephant.

This was really hard. Really. Really. Hard. It was like tossing pieces of the life we had a long time ago, when things weren’t necessarily EASIER (life with little kids and a husband working lots of overtime has challenges), but simpler. We knew where we fit. We were young and unafraid…dreams were made and used and waaaasted….
I can’t help it. All roads lead back to musical theater.

But it was hard to throw away some of that fabric. And some of it HAD to be thrown away. (No joke, I know how those people feel on Hoarders).  And I was all OH, THE METAPHOR because I’ve been thinking so much about trying to throw away the bad feelings, to forgive, to just be at peace with how things are, trying to NOT be stuck in a pattern of slow ugh…

I did find more to donate, and some I saved…because even as I’m realizing I HAVE TO LET THINGS GO, I also am trying this year to hold onto the things I love that have slipped away…I need to make myself finish my last cross stitch project (a LONG overdue wedding gift), I need to start sewing again, I need to paint the little lightbulbs I saved and show my girls how to make ornaments out of random tchotchkes. These things brought me so much joy and creative fulfillment over the years. Creativity is good medicine.


Yes, teaching fills some of that—part of the reason my piles of school stuff resemble snow drifts is because I am always seeking to teach better, to use more resources, to engage students more…
But you can’t wear that, or give it to a friend, or hang it on your wall. At least, my spouse might wonder if I started hanging random charts I’ve made up about Jefferson’s vision for America vs. Hamilton’s vision for America.
That’s a pretty snazzy chart, though.

I think that really, this is what I need to do this year: let go of what I can—the jumper I made in high school and saved because the fabric was so nice (and my plaid is PERFECTLY matched, snapSNAP), the frustration with situations I face daily, the deep almost despair I feel over certain ethical situations that effect my family’s relationships. I have to let this go.  I’m not sure how, because I am a hoarder of things bad and good, letting go is so very hard for me. But these things weigh me down. They have to go, even if that means separating myself from the yikes and actively finding things that create joy (NOT just sitting and watching a marathon of Squatch Hunters because I am too mentally meh to try and actively find joy).

At the same time, I have to re-grip (not regroup, but the same idea. Just grippy) the things that matter, the things that bring me joy.  I need to teach my girls how to be creative the way my mom and grandmother and art teacher taught me. I need to hold onto my family, my sisters and brothers (and their spouses and kids) who I love so much and who remind me of who I am REALLY, with or without the Elephant and all he entails. I need to work more on my faith, which has always been a rock for me.  I need to sew and paint and make jewelry and embroider and do those things I loved. I’m not sure how I let go of them, or where they went…I think the Elephant in our room just sat on them or something. But I want them back.

Well, they didn’t actually GO, they are all still in my basement. In piles. Ergh. But yay, too.

I scandalized most of my husband’s family this year by admitting (ok, by declaring vehemently) that I  HATE the movie It’s a Wonderful Life. I find it intensely depressing. Yeah, George Bailey has friends who bail him out, and his life of continuous disappointment had value. But the next day, after the crowd and the carols and the little bell, you know that George probably still felt a pang when he saw the posters of the places he hoped to travel, he probably still had to breathe deeply when facing the yikes of the job he really never wanted. I know, it’s supposed to be uplifting…

But for me, it’s hard to let go of all of those disappointments and frustrations, especially when there’s no resolution in sight.

THIS year, I hope to look for the joy I know life has…even if that means those situations can’t be fixed. My continuous effort will be to reclaim those things that used to give me a lot of joy and peace (ok, except when I was trying to put a zipper in something and the zipper foot jammed and I was all unprintables! Except back then I didn’t use unprintables nearly like I do now, thanks, Elephant).  I am going to go all Capra on this year. Yes. In little tiny steps. That's the plan.

So, it took 7 months, but here’s around 1500  words and change. Holding tight to old joys, to family, to this brief reprieve we have…and letting go of frustration, disappointment, and all that is the plan.

Do you think I’ll make it past Saturday? ;)

Friday, May 31, 2013

So...Now What?

May 31


So today is the Last Day of Brain Tumor and NF awareness month.

Tomorrow it will be like this whole ugly business never happened, especially if I go and blog about something like Jersey humidity or what kind of cake I am craving.

That would almost always be yellow cake with buttercream icing, just as an fyi. As much as I love chocolate everything, I prefer yellow cake. You’re welcome.

So, now what? Now, you few brave souls who slogged through this tale of woe, now you are left at June 1, the summer shining not too far off. You also are probably totally like “HOLY CRAP, no WONDER she is a terrifying Jersey-girl-snark-attack-amazon-beast woman most of the time! She used to be so timid!” as you look for the nearest emergency exit. Heck, that’s how I feel after writing this for a month.

Even I didn’t totally realize how bad it was, these last nearly 9 years. Yeeks.

You do whatcha gotta do, you know?

G, May 2013

And once you get past establishing that yes, you are out of range of my scariness, you are probably like, so now what?

Well, I heard on Oprah radio this morning (don’t judge), “pain brings purpose” (it was an interview with Fran Drescher, she was talking about surviving cancer). I know for our family, pain DOES bring purpose. The two times I ran half marathons were fueled almost entirely by my anger and pain. And Clif bars. Ok, and hazelnut coffee. Our Coffeehouse gives purpose to our pain. Dave jumping in the Atlantic for Camp Sunshine is fueled by the pain that gains us entry to that remarkable place (and gratitude for the lifeline Camp has been for us). We’ve sold bracelets and chocolates and random tchotchke to help fund research for a cure.

R, May 2013


For us, DOING something makes us feel less like victims of NF and low grade brain tumors and more like recruits in the ongoing struggle to make these things STOP hurting people we love.

So…what can we do?

Well, we try to support groups doing research. The Children’s Tumor Foundation (www.ctf.org) is a good place to start, and the NF Endurance arm of CTF has been our go-to fundraising thing for the last several years. Come run with us. Ok, rephrase, come run with Dave, come “run” with me (I run /walk, using the Galloway method of surviving races, manage to do the Philly half in 2:15 this past year).


CTF also has NF walks around the country (if you don’t even feel confident “running” like me…although confident has never been my problem).

The NF Family Association at CHOP provides support and information to NF families who are patients at CHOP. This is a new organization, and I am really excited to see what they are going to be doing. This is sorely needed at CHOP. You can find the NF Family Association on facebook.

The Pediatric Low Grade Astrocytoma Foundation ( www.plga.org ) specifically funds research on low grade brain tumors. This amazing organization was PARENT initiated (talk about giving pain a purpose!) and has made huge strides already in understanding and targeting low grade tumors. There are many NF applications to the work of PLGA, and I think we will be looking more in this direction in the future.

PLGA sponsored the sorafenib trial; while the trial was a disaster (I believe it closed within a few weeks after G’s catastrophic scan, other kids had similar yikes), the fact that this organization is funding low grade specific therapies so fast is amazing and a great sign of hope. We have no regrets about trying this experimental drug.

We also try to support the places that give us those lily pads, those moments of hope: Ronald McDonald Camp, www.philarmh.org , Camp Sunshine, www.campsunshine.org , and the Friends of Jaclyn, www.friendsofjaclyn.org , Caring for Kids with Cancer. These make Genna’s life happy. We support them (and you can too). The Children’s Brain Tumor Foundation, Supersibs, the Race for Hope folks at the Brain Tumor Society, the 46 Mommas Shave for the Brave… all of these have meant a lot to us in our journey.

So we try to give back. I’m not going to lie…this journey is long, and sometimes the dull ache makes jumping in very difficult. Those awful pain moments provoke me to do silly things like sign up to run 13.1 miles all on one day. The dull ache months are hard to overcome. But we have to try and keep moving. We aren’t alone in this, you know.

And ultimately, we are so grateful. Even as we have lost so many friends (even within our own family), we have gained so many in the NF and brain tumor community. We have experienced amazing love from people we’ve never met. We’ve come to understand that God is always with us, even if sometimes it seems like we are alone. We have overcome our fears and tried to parent in a set of circumstances no “What to Expect when You’re Expecting” book even touches.

We have lost too many children to NF and brain tumors. For them, we have to keep going.

For them, we have hope.

For our Genna, and our Rosie, and yes, my husband Dave, we hope.

To quote one of my favorite singers, Sara Groves, “hope has a way of turning its face to you just when you least expect it”…

I hate surprises, but being surprised by hope is my favorite thing ever. I pray that as we enter our 9th year of brain tumor and nf struggle, that we are surprised by hope frequently…because that is a surprise we love to share.

Peace out, friends.

kc
The Cams Crew, May 2013

Thursday, May 30, 2013

Perfect Place to Stop the Show

May 30


In the words of Joseph and the Amazing Technicolor Dreamcoat (hey, I’ve made it an entire MONTH without a Broadway reference)… “this would be a happy ending perfect place to stop the show! (Genna) after all has gone about as far as she can go!”….

Yes. But no.

See, even after 8 years of yikes and such (EIGHT YEARS. I could have a doctorate by now…not just the one I gave myself in Pessimism and Snark Studies), we have to keep going. Miracle Monday ended with Genna getting chemo, and THAT was our miracle.

The changing definition of miracle has been a hallmark of this entire journey.

Genna started high school. She had more neuropsych testing which did reveal that yes, tumor growth does cause more damage to learning and processing (in the words of Homer Simpson, “DOH!”). She continued with chemo, and over time the side effects have gotten a bit challenging…but so far EACH scan since Miracle Monday has shown further reduction in tumor size in that scary section near the foramen of @^#(@% Monro .

 (BT note: the @^#@% added before brain parts is only added by moms and/or dads after years of seeing tumor locations described on radiology reports and having a NEW unheard of locale show up).

We’ve had to hold chemo a few times due to elevated protein levels (back in January, and now since April), a common toxicity associated with Avastin, indicating that G’s kidneys need a break (she feels fine). We have learned that even a teeny tiny scratch bleeds like the dickens if you are on Avastin. We’ve also learned that some of the hidden side effects of Avastin are harder for a teen to deal with…

As a teen back in the tumor battle (not a little girl anymore), G has continued to struggle with school, with terrible anxiety, with sadness sometimes. She does have some FRIENDS this year at school, real friends, a FIRST in all these years. BT/NF kids often have trouble interacting with their peers, and G has certainly experienced this.

At the same time, I have gotten scarier and scarier in dealing with people who won’t step up to help G when she needs it, or who won’t take the time to LEARN what she needs. I struggle these days more and more to find my emotional footing; prolonged survival mode can be very numbing and very demoralizing. I can use certain unprintable words as EVERY part of speech. In the same sentence.

No, really. I can.

Dave, too, has lost a lot of his original optimism and zen. A lot of the time we are mostly alone, the associations we used to have just couldn’t withstand this many years of cosmic smite. I am increasingly grateful for my family, and for the folks in Dave’s family who support us. Those who remain have been with us every step of the way, and we can never thank them enough.

This road is hard. Not to be all “cue the violins! Release the mourning doves!”, but it’s hard. Stupid hard. And there is no end in sight.

NF as manifested in low grade brain tumors is an ultramarathon, not even just a regular marathon. There are mountains and crevasses and raging rivers and at some point you’ll be duck taping your feet to hold them together. NF / low grade brain tumors are like THAT.


Still, G continues to love music, and babies, and our dog Coco. She rocks out sequins and animal print whenever possible.

In 2 days G’s big brother will graduate from high school, a day I had some doubts about. The wreckage firstborn carries from years of this battle causes me more pain some days than G’s stuff, because it is so hard to find support for siblings. Rosie is doing well, she looks out for her big sister, she is STILL stable, thank God, still tiny (her NF thing, she is super small), still as shy as G is outgoing.

We carry on…

I don’t know what our girls’ future holds. I so want to be a grandma, but I understand that that may not be possible. I so want to help Genna pick out a wedding dress someday…heck, I so want to help her pick out a graduation dress in a few years (I already told her she could do sequin animal print if she wants. Really. So…yeah. I’m ok with that). But I know even that is not promised us.

We only have today. As our friend Sandra once said, back in her sickest hours near the end, when she heard someone say we have to live one day at a time , “how can you live more than one day at a time?” …and that is so true. We only have today. I forget this about 8 times a day, but it’s so true.

We have 2 weeks of school left. G can’t do chemo on Monday as planned, she is THRILLED to not miss school. Then we have finals, and that Thursday G has an eyeball check in Philly. Hopefully the following Monday her protein levels will finally be ok to resume Avastin. We can’t really stop…we know what happens when people stop Avastin.

But we only have today.

Tomorrow I will answer the “Now What?” …but we only have today, and today G just came back from a pool party at art, she has a youth group party later…she is freaking out about school so she is listening to a Popple   www.popple.us  cd to make herself feel better…

We only have today.

And today isn’t all that bad.