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.

 

 

 

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 ibiblio.org)

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?

Giving Thanks

So it has been a year. Not just “a” year, but “A” year, the kind of year that we will likely look back on and shudder about, and wonder about, and hopefully remember at all. Stress is a powerful amnesiac.

Anyway, here are 10 somewhat ridiculous and otherwise kinds of things I am thankful for this year.

10. I am not a turkey.

Really, on Thanksgiving that is a reasonable reason for gratitude.

9. I have teeth.

Yes, I like chewing. That is why I am not a smoothie fan, I so like to chew. And at Thanksgiving there are SO MANY tasty chewable things.

8. I am not vegan or vegetarian or on a low carb diet.

None of these are the end of the world, but I am grateful on this feasting day that I am omnivorous and that for whatever reason God has blessed me with an energetic metabolism. Phew. That is a mercy and I am grateful.

7. I don’t hate football…and not just because of “when in Rome” yadda yadda.

6. I still have a house, and electricity, and heat. Not everyone in Jersey does. I am grateful.

5. For pie.

4. For all my random phobias, anxieties, and neurotic tendency to panic/overreact at the slightest provocation, cooking and baking do not scare me at all. This is a blessing at this time of year.

3. My spouse likes to wash dishes. He is more than a little OCD about washing dishes. Winning!

2. For Parades with Balloons…a delight that Never Gets Old.

1. Finally, for family, friends, doctors—sometimes it’s hard to tell where one group ends and another begins…

A year ago we were truly on the brink. At Thanksgiving we were days away from one of the worst days ever for us, and I think some part of me knew that something was brewing…and that time was only the beginning of some of the worst months ever for us. We’ve moved from shell-shocked to having some peace in this new normal (at least most days). We’ve made it through a really hard year. So for everyone who has stood with us, we are grateful.



Happy Thanksgiving, all! Now go chew something delicious. ; )

Twinkie, Twinkie, Little Snack, How I Hope you Will Come Back

So Hostess is no longer the company with the mostess, and the prime sustenance for the zombie apocalypse, aka the Twinkie, will no longer be sold. I’ve heard that a box of Twinkies was going for $24 the other day on Ebay. Silly memes depicting “Never Forget! 11/16/12” with a picture of a Twinkie are all over the internet. And, since it is a pretty well established fact that I am a very high functioning sugar addict, I guess it’s not much of a surprise that I have something to say about this. Yes, I actually have a cookbook in which the main ingredient in EVERY RECIPE is a Twinkie. No lie.




See? I am so truthful.

But in the interest of full disclosure: I almost never eat Twinkies. My youngest didn’t even know what a Twinkie was when I mentioned that they would be gone Forever.

Wow, what a GOOD MOM I must be, right? My kid doesn’t even KNOW what a Twinkie is! Oh, the Maternal Awesomeness, right?

No. I am cheap.

Twinkies are flipping expensive, like $3.59 for 8 cakes that my firstborn son could polish off in about 4 seconds, which would then allow time for him to run for his life before I fully process what he has done (just like the time I found the EMPTY box of Girl Scout Samoa cookies in his room. A jury would acquit me, I am sure…)

So I never buy Twinkies unless I need something cylindrical for a kid cake (we had funny Larry the Cucumbers once made out of Twinkies. So cute, and a boon for the cake-decorating-challenged). They are just too darn expensive.

Soooo—if I don’t eat Twinkies (or the little choco cupcakes with the white squiggle, or fruit pies, or the Yule log ones –yodels? Hohos? Or is that the wrong brand version?—or Devil Dogs (ok, THOSE are nasty))…if I don’t eat them, why do I care?

I am cheap, admittedly, but I am also relentlessly nostalgic. I think the more smote my life has become, the more I cherish those happy things from a long time ago.

When I was a kid, my dad used to buy us the Hostess Snowballs every so often when we were out running errands with him. My children quickly learned the important life lesson that my siblings and I all learned years ago: running errands of any kind with Grandpa (or dad, for me) equals treat of some kind. And I distinctly remember getting those marshmallow/coconut Snowball cakes with my dad. I don’t even LIKE marshmallow anymore (yuck), but I loved that treat, that part of time with my dad, that tantalizing sense of you were getting a treat that mom would NEVER say yes to (my mom is a hard core frugalista, and when I was young she was in a wheat germ cookies kind of season for a while). Snowballs (and sometimes fruit pies) were a forbidden fruit that Dad said yes to, without any begging, he would just OFFER IT FREELY! Woo!

Hostess treats were one way our dad showed us he loved us.  And we knew it.

And in college, when I had zero dollars at any given time, and often tried to ease my anxiety by not eating ever quite enough (bad choice, I know that now), I knew for under a buck I could get a Hostess apple fruit pie at the little convenience store on campus, and joy would be mine.

When a neighbor was diagnosed with cancer, we brought over melons and other fruit for her…and a box of Twinkies for her spouse, who was wracked with worry and the pressure of care-giving…and who loved Twinkies. They were medicine for HIM.

And yes, I made my second born some Larry the Cucumber Twinkies for a birthday several years back, likely before our world got smote…I don’t quite remember.

About a month ago our supermarket had Hostess stuff on sale (should I have been worried then? Maybe). I saw those fruit pies, a lovely 8 pack for $1.88 . HOW COULD I REFUSE?? 50% off! So I didn’t. I bought them for myself, and I hoarded them, and ate them when I was having a really bad day (I paced myself, otherwise they would have been gone in a week), and I just enjoyed Every. Last. Bite.

Finally I got down to the last one, and I ate one pie in the pack and planned to share the last one with my youngest, to introduce her to that special kind of “sharing mom’s secret treat” moment…but then she took too long putting shoes away or something, and I ate the last one.

Yeah, aren’t you glad you didn’t slap that Good Mom gold star on me back in the early paragraphs?

It was delicious. I don’t even really feel that guilty. You can give me the mangy Bad Mom ill-fitting t-shirt. It’s ok, I have a bunch already, it will fit right in.

But I do regret that I won’t be able to share that moment with my youngest. I know, I can create it with another treat or something, but treats with history mean more somehow, they are like Legacy Treats. You can’t create this kind of memory over a kale smoothie or a vitamin (heck, my only vitamin memory with my kids involved a series of panic-stricken calls to poison control. But that’s another post). I know, I fully acknowledge that this is silly and superficial and really I should be reading my children the classics and crafting celery boats for snack while listening to Mozart…

But nothing quite beats the delectable satisfaction of the occasional special treat that you know is purely a TREAT, not a life choice. Twinkies and the pantheon of Hostess Cakes have always been one of those things for me….

And you know, I never did get to make that Twinkie sushi recipe in my Twinkies Cookbook. Dang. Wonder how the prices on Ebay are today?

Jersey Lament

from Tuesday, 10/30

I type by the light of 2 battery “accent lights” from a 6 pack I got at Costco on Saturday, my back vaguely warmed by the sea of candles lighting the rest of my first floor. I cannot even upload this post, since we are without power, like most of New Jersey, and without power, I have no wireless internet…but I still have some computer battery left…so here I am.


Hurricane Sandy was, for us here on my street, a big storm punctuated by four hours of Really Scary --think 40 foot willow tree bending sideways in my yard as we heard pieces of our house peeling off. We lost power about 8 p.m. on October 29, just after the storm made landfall far to the south of us, near our beloved Cape May…where my onco kid conquered her exertion anxiety and climbed all 199 steps of the famous lighthouse just this past June. Within an hour of the power loss the winds picked up, the air sounded like a freight train even from the safety of our candlelit living room. From our somewhat protected back deck we could see the sky lighting up as transformers and wires danced explosively. The sound of it was something I have never really experienced before….


And we are miles and miles from the nearest coastline.
This morning I was afraid to look out the window…but in the breezy stillness and light rain I could see that the willow, while maimed once again, was still standing. We lost 2 gutters and 3 pieces of metal trim literally peeled off the roofline of our house (the longest twisted piece of metal is about 7 feet long)…but aside from that, and a carpet of branches, we were remarkably unscathed. Our entire neighborhood was remarkably unscathed, one dead tree had fallen in the space between 2 neighbors’ houses, but that was about it.


The three gourds someone lined up on our deck railing remained in a neat row this morning.

We are so lucky.

My spouse went out in search of coffee and a real bathroom (we have well water, so no power=no water, and only late this afternoon a neighbor with a generator hooked us up to their well so we can at least flush toilets and wash hands), and saw the extent of the damage near us…trees down everywhere. Wires down everywhere. Houses hidden by fallen trees. Poles and wires tangled and blocking roads. It’s a mess. We found out that a good friend who lives about a ½ mile away had significant damage to their home and property. My work (a school) had 14 trees down on the campus, and the streets around it are impassable because of downed utility poles. Friends around the country were texting me, but I could hardly get my texts to go out, the networks are overloaded here or something…

And then we managed to find some radio coverage of what was going on…

Our poor New Jersey got flattened.

Being disconnected from information NOW is so frustrating, so deeply frustrating. See, Jersey is a really small state. Freakishly small. So when news reports talk about Hoboken or Jersey City, we remember when we went to dinner there…or a reporter stands on a windy beach in Point Pleasant, my youngest remembers when Daddy got to chaperone her class trip to the aquarium there…or the camera pans to Atlantic City, I think of the fun I had with my sisters on my 40th birthday trip there, or how I went there with a friend on my first grown up vacation when I was barely 21. Seaside Heights? My first NF Endurance race. Lavallette? Where my parents vacation every summer. Newark? Great time at a Devils game, or where my girls got to see Taylor Swift in concert. Hey, that reporter is right by where we did the Polar Plunge for Camp Sunshine last February!


Jersey is small. If somewhere is on the news, unless it’s the far southwestern portion (that’s a tad less accessible to northern Jersey folks), we’ve been there, and generally had fun there, or we have friends who live there, or a neighbor works there….

Sigh. Sandy threw a smackdown on our neighborhood, both locally and our little state.

Getting specks of information, not being able to get cell phones to connect, not seeing what is going on…knowing that all of our favorite places are not just struggling but likely obliterated…it’s appalling and frustrating and scary.


I know we are tough here, it’s what Jersey is famous for, in some respects, that “fugghedaboudit” attitude that is so easily parodied. But under that, just like under any tough shell, is a deep love for this crazy little state. We accept being the punchline of jokes because we know the truth about the gems that lie just beyond the famous Turnpike. We know that we have invented all sorts of unique and impressive forms of corruption here, of double dealing, of stupid laws, of personality stereotypes, of insane home prices and cost of living, of food (ok, our food is awesome)…but beyond ALL of that ridiculousness, we love this place.


I know I will cry when I finally see the pictures, the pictures of this state I love, this state I call home. I don’t have it in me (in the dark of my powerless house) to burst into inspirational song about triumph over adversity…this one hurts. It does. The scope of this is so huge, and our state is so small, it’s our home, every corner of it is kind of in our backyard.

But we are Jersey proud. And we will get through this, even if it seems sooooooo clichéd to say that right now. So Sandy…we know you threw your best at us, and you knocked us down, and yeah, you flattened us…but are we going to just lick our wounds and hide in the Meadowlands with Jimmy Hoffa somewhere?

Fugghedaboudit.

My Pretzel Shaped Cocoon

I want to be a pretzel maker.

No, I don’t mean I want to make a batch of pretzels. Been there, done that, it’s kind of a Lent association for me now. And when you can buy frozen pretzels for under $2…the flourtastrophe that making pretzels always becomes is even less appealing.

I want pretzel production to be my JOB.

I know, this seems bizarre, but bear with me.

A few weeks ago, just after our first familial visit to the Reading Terminal Market in Philadelphia, (a culinary nirvana), my youngest and I discovered an Amish market right across the street from her dance studio.

Now, the nearest Amish person house is over 2 hours away from where we live, so discovering an Amish market close to somewhere we go 2x a week was a bit of a novelty.




I know, "discovered" seems silly. It's a large building. But it's only open on certain days, and we had never been there when it was open until a few weeks ago. Hence our discovery. Not unlike European explorers "discovering" America. Like it wasn't there before? hm.


Right inside the building is a large pretzel making area. 4 Mennonite girls work kneading dough, shaping dough—stretch, flip, twist, done!-- taking dough (now magically pretzels) in and out of an industrial oven, dunking pretzels in a crock pot of melted butter (!!!), globbing cinnamon raisin pretzels with sugar glaze, wrapping little hot dogs in pretzel dough, creating 16 other variations of pretzel bites and sandwiches and wraps of delight, and cheerfully taking money from hungry pretzel cravers.

Which of course included my youngest and me.

Oh, the raptures of buttery delight! Oh, the sticky glaze covered fingers! Oh, the fresh squeezed lemonade! We were instantly hooked. I’m not even really a bread person, per se, but these were insane carbalicious perfection.

Pretzel procurement has now become a weekly tradition.

And then…life continues on. And lately, that continuation is just…so…meh. Little frustrations, epic stupidities, schedule impossibilities, back to school stress, work stress, and the over-arching lens of catastrophic illness…I am left so often feeling like This Is Not What I Wished For.

This isn’t a new road, and it runs super close to Whiny Whinestreet, so I want to step carefully. But I was left thinking, after seeing those Mennonite girls working and smiling and pretzel making like crazy, that I should love to be a pretzel maker. The work is so tangible, so instantly gratifying: mix ingredients in proper way. Shape. Bake. Dunk in butter. Sell to happy people (because pretzel buyers seem to be flush with happy anticipation, at least from our brief studies while on line).

There is something so basic and lovely about feeding people as your job.

Ok, so I’m mom. And I work fewer hours than my spouse (way fewer). Feeding people IS my job, but I don’t mean feeding people a protein, not too much carbness, forcing them to taste the salad or broccoli or veggie of choice. THAT is a thankless task most days. Don’t get me started. But feeding people something delicious and lovely, something that’s a treat…pretzel making would be like making cupcakes for a living but without the pressure of making frosting look pretty. My baked things taste fabulous. I have zero patience for decorating beyond a dash of festive sprinkles.

In these days where life is once again living me, I long for the comfort, the safety, the simple pleasure that those pretzel girls seem to have. I do NOT want to be Mennonite (can you imagine my spastic hair in a bun? Or my giant fat head in a little cap? Or LIFE WITHOUT FACEBOOK?? The horror!), and I know that those girls are probably exhausted and super sick of flour and yeast and splatters of melted butter by the end of the day. But there is something about pretzel making, about making people happy AND doing a good work that is super appealing.

I had several years in which I got to be a stay at home mom. I am grateful for that time, even though sometimes money got really tight and I was generally plagued by self doubt. I admit that DURING that time I always felt like I should be working, I needed to do craft fairs or try and write or do SOMETHING to bring in some income. I felt exceedingly BAD at the SAHM thing. My house was always messy, my kids tended to look happily feral, I felt overwhelmed by sleep deprivation and the deadly plague of SAHM comparisons. I never felt good enough at that whole SAHM gig. I tried really hard, but…yeah.

At the same time, I did routinely sew my children clothes for special occasions, and heck, I sewed most of MY special occasion clothing too! I would cross stitch everyone an ornament each year for Christmas. I made random tchotchke out of toilet paper tubes and construction paper. I would cook, and read stories, and then feel guilty for playing FreeCell for hours. Some things, some nurturing kinds of things, those I COULD do. And I miss that, in the crazy hectic yikes our life has become.

Now I work part-time in a job that takes about twice as many hours as I actually get paid for, which is largely my own skewed sense of This Must Be the Best History Class EVER-- EVERY DAY. My house is still a mess, my 10 year old never detangles her hair, my visually impaired/comfort is everything and I don’t want to run up the stairs again teen creates some insane fashion statements (soffe shorts, a tie dye shirt, knee socks and school shoes?), and my first born lives in a biohazard lab. Our weekly schedule looks like a write up of the tactical plans for the assault on Normandy. My dining room table is obscured not by toys and craft projects but by paperwork. Instead of toddler toys all over the floor we have puppy toys all over the floor. I know the pizza place phone number by heart. I’m not sure I’m any better at this gig than I was at the SAHM one.

But now my kids are older. The baby is in 5th grade, and I feel the strain of being done with “mom of little kids” far sooner than I had planned, especially since so many of my friends and family are still having babies. The weather is turning colder, and I think I just want to cocoon my kids somewhere safe, somewhere different than the perpetual stresspot we seem to flounder in so often. Looking at old pictures, we used to be a lot better at just BEING…but maybe that’s the skewed lens of nostalgia.

I have been baking a LOT, and lighting pumpkin candles, and sorting out drawers and things. This feels good, somehow.

Maybe it’s just the change of seasons, maybe in a past life I was a bear and I just want to hibernate, maybe I really AM supposed to just stay home and bake and try and create a HOME for my family instead of a base of operations…

For whatever reason, that pretzel job seems so delightful right about now.

Do you have anything like that? That job/place/moment that seems like it could just be so nice…not the umbrellas and sunshiney beach kind of place, but the cocoon moment? Where do you find that space?

And in the interest of full disclosure, as soon as I wrote the first draft of this I brought one of my children to the aforementioned market, which then led to a complete hypothalamically driven pretzel-tastrophe. Sigh. So much for the cocoon.

At least in my search for that cocoon, I have left a giant trail of baked goods in which to find solace. ; )

My sister took this picture with her phone. How do you like THEM apples? I mean, the actual apples with caramel sauce. And my pumpkin shaped cake. Yum.

Cathedral Couture and the Parade of Smite (or Might?)

So we limped into church on Sunday, September 16th, at the chapel of the Cathedral of Saints Peter and Paul in Philadelphia, PA. Well, I limped. My girls bopped, my son sort of wandered in after my husband. My knee hurt more than I knew a knee could. I still haven’t figured out what I did to it (aside from running 13.1 miles, ALWAYS a bad idea), it still hurts ominously when I move too fast or in the wrong kind of way.


Anyway, we got into church just this side of late (my girls and I squeezed around the priest who was waiting for the entrance hymn to begin—the boys were actually late), and got ourselves situated.

Normally we see some other folks who have just run the ½ marathon. How can we tell? Obviously because of their extreme fitness and glamour…

yeah, you know it's glamour. I never knew glamour had a stench. Bleh.

…ok, no, it’s because they are all wearing the t-shirt from the race. Hubby and I had ours on, a lovely blue with a patriotic kind of vibe going on. My girls had their NF Endurance NEON yellow support team t-shirts. Firstborn sported his ubiquitous baseball sweatshirt.

I had my race day/hospital bag as my purse, the one with the FOUR GIGANTIC PINS ON IT. One for G, one for R, one for September as Childhood Cancer Awareness Month, and one that says I wear Gray for my Daughter. We were like an awareness parade.

(And yes, this is a DIFFERENT bag arrangement than the one I agonized over a few months ago. We got this bag at Camp Sunshine, and it just works great as a hospital bag. Soooo glad I spent all that time agonizing. Urp).

Why is this even worth telling? Well, nobody else there was from the race. Everyone else looked like they were going to Sunday 12:30 Mass in a massive cathedral chapel where you might just run into the Archbishop. I wish we had, I use his book in my senior history class…although I would have limped into him, there was NO MORE RUNNING happening again ever. Anyway, everyone looked way fancy. Three rows in front of us sat an extended family there for a baptism in the actual cathedral after church (favorite Mass distraction? Baby in baptism gorgeousness being admired by rows full of extended family). Oh, the fanciness! Think suits, dresses, nicer than business casual kind of clothing.

Oops.

I felt a little self-conscious, normally I don’t on race days (the 13.1 is wildly empowering on that front; heck, I almost wore my medal to church), but I realized we were WAaaaay underdressed. Ergh. The dad in the row behind us seriously had on a suit, and his kids and wife were equally impeccably dressed. At our church at home people come in all kinds of garb, from grungy to Gucci, but this cathedral couture was intimidating me.

I just felt schlumpy. And my knee hurt so badly, I wasn’t even kneeling right.

Yes, Catholic guilt has its own life force sometimes.

It's an impressive building.

Mass was not terribly long (I feel awful saying this, but phew, my knee REALLY hurt and we kind of desperately needed to eat massive quantities of food STAT), and as we were leaving, the suit-clad gentleman behind me leaned over and put his hand on my shoulder.

“God bless you and your family,” he said, with such an expression of compassion it almost took my breath away.

I thanked him, and told him I appreciated that (and then went to make sure G didn’t knock over any of the baptism family)…

It was kind of a moment.

Like I said, I realize we looked like an awareness parade, I should not have been surprised that he drew some conclusions from the portrait of smite (or might?) we presented. But somehow, somehow it just filled my heart to think of that gentleman sitting behind us…seeing us in our race wear, my girls with G-foRce! painted on their shirts, and that bag that proclaims our story…and what he must have thought in that moment…

NOT that we were underdressed for church, but that we could use a blessing.

Whoa.

This makes no sense. I embrace that. I know it doesn’t. But I still find it surreal, 8 years in, to think that we are a family that has our kind of story. I am pretty open with our story, I beg shamelessly for help for research, I kvetch about chemo traffic and sing the praise of my mighty warrior child who has a lot of attitude about cleaning up her room. But I am open through the computer. In person…I skew a little scary, a little bit like our smite might be contagious. A little bit WOUND TOO TIGHT? Well, maybe not THAT. Ahem.

Somehow in typing our story I can give myself a little distance, a little control. This unscripted moment of compassion , brought about by the visual my family presented…

I don’t know. It just made my heart feel kind of full, and sad, and grateful, too, for the kindness of so many people.  And it sort of smacked home the REASON I run...because of the real marathon we are in , the one measured not in miles and fartleks (what a dumb word) but in rounds and relapse. 

Because my G has hair, normally strangers don’t know her story. I can’t overstate what hair means for a family mid-chemo. Hair means anonymity. It means we can pretend. This moment in the church, this moment of kindness, this moment where someone knew our secret and then took the time to offer a simple word of solidarity…

This was a MOMENT for me.

September is childhood cancer awareness month. So many of our friends are working tirelessly to foster awareness. Awareness = interest = research=hope . I just find it’s so much easier to foster cyber awareness than actual awareness in person.

And yet I’m glad. I’m glad that we could present a ridiculously underdressed, limping, sleepy (my R was so trying to doze during church) version of Pediatric Oncology 101. In real life, this IS what a brain tumor battle can look like, even if that still strikes me as ridiculously surreal. Childhood cancer (or aggressive low grade tumors, as in our case) doesn’t have a dress code.

But the battle against it sure merits a medal.