Stuck on the Shoulder

Life can never be exactly what you want it to be—
I could be satisfied, Knowing you love me…
(This is dedicated to the one I love)

I’ve reached epic fail on the blogging front.

For both of you who read here, I apologize. Not because I have some deluded sense of Sin of Word Deprivation, but because I’m a creature of habit who obsessively checks several blogs regularly. I know that twinge of disappointment when there are no new words to be read.

I’ve hesitated to post this. Nobody wants to read Confessions of a Waaaambulance Rider, and I feel like the descent into whine is never more than a step away. But I hope that by at least putting some words on screen I can take some kind of step, even if it’s a slippery one.

When I began this blog, I called it “Moving Right Along”. As a Jersey girl/manic mom/sugar addict/high school teacher/wannabe runner/bearer of an NF-brain tumor flag, my life tends to hurtle forward, kind of like Daffy Duck in the Robin Hood episode…

“ I trip along merrily! I trip along merrily! I trip I trip I trip I trip I tri-hip up and down! I trip trip trip trip (falls down hill)…trippity trip trippity…I tri-hip it up and down!” .

Well, that, and I like Muppets. Inordinately.

But recently, for whatever reason, I am not going anywhere.

I’m still busy as all get out. School has been a challenge: a good challenge, but a challenge nonetheless. My teenager defines Challenge, generally not in a good way. My little ones…well, one isn’t so little anymore, and she’s trying to make sense of growing up. My baby is my heart, a balm to my soul (albeit one that can NEVER find her socks or her ballet tights and forgets herself in a game or movie when I send her to do a chore). Everyone has activities, everyone has projects, everyone has needs and wants and the washer is broken and my spouse’s running clothes REEK and I have no clue what to make for dinner.

In that respect, life is moving right along just like it always does.
But somehow, lost in the late summer, my heart is stuck, my mind is frozen. Well, frozen in the sense that there are 57 million ice cubes racing around inside the frozen brain and yelling at any given second. This is most annoying at 5 a.m., but it gets old at any time of day.

I can go into a store, and see something that puts me right back in 2004. Yesterday it was those crazy erasers, the little Japanese collectible erasers my girls are nuts for. I saw a sushi set…and instantly was back in the onco playroom, where the play kitchen set had a somewhat disturbing plastic sushi play food collection. Today it was a song on the radio, more accurately a conversation about radio songs that meant something, followed by the thought of the song that was playing when we headed to Philly for biopsy results in 2006. It’s like my mental TARDIS is broken (not unlike the actual TARDIS often is, which I guess should be comforting).

It’s like the crazy vines in the movie Jumanji, or Audrey II in “Little Shop of Horrors”. The vines catch my ankle and drag me down…and darn, they just keep
growing.

Many of our long time friends in our community of woe are really suffering. Many are reaching that point in the journey that is the nightmare of every parent, but an acute agony for the parents who walk this long road too. Every child suffering, every parent suffering, is another tendril that holds my heart from moving.

Why, after 6 years, this is such an issue, I have no idea. Anyone? Bueller? Bueller?

Last night I saw a quote on Facebook that said, “Anxiety is the crippling fear over some possible future evil. The irony is that, except for sin, anxiety is a greater evil than any evil that could possibly come upon us -- for anxiety disquiets the entire soul and renders it unfit for any good work.


While I don’t know that anxiety is a greater evil than any ACTUAL evil –about 10 minutes in a pediatric intensive care unit with your child kind of puts the doubt on that—I do see that the disquiet of anxiety, the noise, the 57 million ice cubes, can get a gal stuck. The noise makes all other words, all other blog entries, just seem meaningless.

I am waiting and hoping that the poster of that quote posts the “and so you do this and live happily ever after” follow up quote…

And waiting…and hoping…and waiting…and hoping…

But in the meantime, I am trying to make sense of things, trying to embrace once again that life really can never be exactly what I want it to be, but love truly makes things bearable, if not better.

Hopefully as we get into Thanksgiving I can get some of my verbal and mental mojo back. I don’t really know how, but as a Jersey girl/manic mom/sugar addict/high school teacher/wannabe runner/bearer of an NF-brain tumor flag, I really don’t have the time to be caught in some mental game of Chutes and Ladders, where every step forward leads to a big twisty slide down to yikes.

Really, NOBODY has time to be “merely a flesh wound!” everywhere she goes.

I’m not sure how to do this; but I hope that I can start moving right along again, that I can formulate coherent sentences and get the washer fixed. Until then, I’m going to see how many more movies I can reference in a single blog entry… : )

Jim Cantore, Go Home (please)!

Last weekend we did not get hit by a hurricane.

Granted, I wasn’t all that worried about getting hit by a hurricane, but weather reports were full of breathless meteorologists pointing at maps and standing by beaches, updating Hurricane Earl’s progress about 87 times an hour. Jim Cantore of the Weather Channel was on site in North Carolina, waiting for the Big Hit.

If Jim Cantore comes to your town, prepare to be smote by Mother Nature.

I don’t live on Long Island, or in coastal North Carolina or Cape Cod, or maybe I would have been more concerned. But even for folks living in those beautiful, vulnerable areas, Earl ended up being much less than anticipated. I almost felt bad for the weather people, even as I felt relief for the coastal residents.

Our resident elephant went back under the couch yesterday, and left behind for me a whole new understanding and empathy for people who live in hurricane prone areas.


When a hurricane is predicted, people in vulnerable areas have to take certain precautions. Board up the house, get the boats out of the water, tie down loose stuff in the yard, get provisions, prepare an evacuation plan in case that becomes necessary. I would imagine that with each passing weather report and computer model of the approaching storm, hurricane survivors would remember the one storm they weren’t ready for, or the time their preparations were not enough. The lessons of past storms converge with the potential yikes of the incoming weather.

I would imagine that anxiety would rise, and within the 24 hour mark of landfall residents just start throwing things in the car, or the shed, shoving things in safe places, grabbing cans of Spam and grape jelly from the store even if everyone in the family HATES Spam with our without grape jelly.

But then…what if, like Earl, the storm peters out, or moves off shore and just sits, or takes a new unpredicted path?

Obviously there’s intense relief. A reprieve! An aversion of destruction! Woohoo! Jim Cantore is going home! Yay!

But at the same time, I think there’s probably a sense of…lostness, for lack of a better word. I think of those people looking at the boarded up windows, the boat on land, the case of Spam, and think, “now what?”

Dismantling preparations is a weird thing, especially when you can see the eye of the storm circling just out of the corner of your eye. You know you still live in hurricane zone, but you have to dismantle, find some culinary creativity or donate the Spam, unboard the windows, search for all the stuff you threw in the shed in a panic (“Mom! Where’s my ZhuZhu pet?). This is the easy part, even if it’s a bear to do.

But what do you do with the anxiety? The fear stoked by the storm, the legitimate terror that comes with past experience and knowledge that the storm isn’t gone, it’s just off course for a while?

What do you do with that?

How do you explain to people that yes, you are SO RELIEVED you don’t have waves crashing through the front windows (not that you would, they’re still boarded up), but you see the maps. The maps of the storm are always in your mind. YOU KNOW THEM. The experts told you what the maps said…you’ve been hit before. You know today’s reality is all we’ve got, but you are cognizant of what reality has been, what it was predicted to be, and what it could be down the road.

So even though today is all we’ve got, it’s hard to just zip back to ok.

I appreciate that. So thanks, Earl, even though you disappointed the Weather Channel folks. Poor Jim Cantore will find another storm to cover (he may already be courting Hermine, I don’t know). Thanks for giving me the perfect analogy for the day after the elephant hides again.

We are so grateful, and so relieved. And still reeling a bit, even though the news was good. Unfortunately for humanity I had to return to work today, where the elephant is well known. Hugging a dear friend whose prayers joined with so many others on our behalf almost put me over the edge. Answering the question “They can’t just cut it out?” was ok, having a discussion about a change in services for my child, not so much. Out of the corner of my eye, the eye of the storm waits. I know after a few days I can block it out again, but not today.

But now, baseball practice awaits. A patio umbrella just went through my back window while I was typing this. And I have to figure out what to do with 12 jars of peanut butter…

Beast for Sale, Answers to "Guilt"--Call Now!

Guilt is a curious beast.

That said, I should include a disclaimer that this post includes Mild Rant, Strongly Held Opinions, and Possibly a Trace of Household Elephant Influence. Know that if you read on, you may disagree with me, or find me more obnoxious than usual. I just feel like I should warn you before I get rolling…

And no, nobody said anything to me (conversation? Um, no, that door seems to have closed), nothing happened. I just had to put thoughts into words in response to an article I read.

Anyway, guilt is a curious beast.

I am the oldest child in a large Irish Catholic family. I can fill pretty much EVERY stereotype ever held about random guilt! Any gaps in my own resume of anxious failure are filled by society’s emphasis on perfection. The problem is, the Path To Perfection seems to go in competing directions.

Parenting books tell me I shouldn’t have let my kids watch Barney in preschool, now they will never learn. Other parenting articles tell me an hour of Sesame Street a day is a good thing. My kids need enrichment activities to remain competitive, no they need “down time” to fully develop. I should have gone back to work when my kids were younger to support our family more, no, I should have been happier about staying at home. My kids need to have a Catholic education, no, my kids need the resources of public schools, no, good moms home school! My kids should never eat carbs, my kids should eat whole grains only, we should never have sugar, a balance of treats makes for a healthier soul…ack!

What’s a girl to do?

This girl tends to generally just wallow in guilt over roads not taken or roads taken badly. As I’ve gotten older (and more glamorous!) I have found some peace with my choices, or I’ve accepted the bad ones and tried to move on. I am far, far from a perfect parent. I am impatient and quick-tempered and messy, I’m apparently sometimes funny, I’m a good cook, I NEVER wear mom jeans, and I take great joy in life’s little cool things like a woodpecker in the back yard or a blimp flying by my house. I have great, normal kids. They make me insane, they fill me with joy. I figure my screw ups as a mom will only give the kids really interesting material for a therapist down the road.

Despite my pile o’ imperfections, I know I have to just tell the voice of guilt to Be Quiet and let me live!

But guilt is big business. Between magazines and newspapers, internet articles and surveys, book tours and talk shows, we are all constantly bombarded with ways to Make Our Lives More Ideal. Conversely, we are bombarded with a message of “if we only did things differently, life would be better”. From fashion shows to home design critiques, our society is jam-packed with criticism and blame.

But REALLY, bad things happen, sometimes with painful randomness. Blame really isn’t always productive, especially when there’s no restitution to be found, but in our litigious culture that’s a difficult attitude adjustment to embrace.

My Elephant is waving at me.

I’ve discovered in the last few years since our Household Elephant joined our family that I have NO ROOM for guilt about the random painful bad things. Random bad things Happen. Blame doesn’t help. Guilt doesn’t help. There’s no room in the stages of grief for random guilt and blame.

We need to make healthy choices. Certain things are no-brainers. Try to eat right, exercise or at least stay somewhat active, keep our minds active, act in a way that respects others and us. Within those parameters, there are a lot of good options for how to be live an emotionally, physically, and spiritually healthy life.
But sometimes, even when healthy choices are made, catastrophe strikes.

It isn’t anyone’s fault.

Cancer isn’t anyone’s fault.

Ok, there are environmental realities and disasters that have created clusters of illness. I’m not referencing those. And I know science has shown that certain things do put people at a greater risk for cancer; still, placing blame on someone for their illness is never a healthy sociological choice. I’m talking about everyday folks getting cancer or brain tumors or diseases that force them to face life a different way.

It’s not their fault.

I have a lot of friends in the cancer community. Too many. Most of these friends are in the pediatric cancer community, although I lost 2 grandparents and my husband lost one grandparent to random, horrifying cancer. Several good friends are battling adult cancers now, and I am continually inspired by their grit and determination to Show Cancer Who Is Boss.

Their cancer is not their fault.

Pediatric cancers are particularly horrific, and leave parents feeling horribly helpless and wracked by a sense of “how did this happen?” Science is working on trying to figure that out…but to blame lifestyle or parenting is cruel and scientifically inaccurate (EGADS! The kid ate a chicken McNugget! Call Child Protective Services! )

To sell guilt about “if they had lived (fill in the blank “Wellness Business”) lifestyle” this wouldn’t have happened is deplorable. To sell quasi-science as a panacea is appalling, especially to these most vulnerable of people.
It also removes mercy from the equation. If someone is suffering, isn’t the healthiest choice for me, the friend, relative, or acquaintance, to encourage, support, and help? How does finger pointing create anything positive?

We probably all should live healthier lives. But to say that anyone who has cancer probably “wasn’t living a (fill in the blank “Wellness Business”) lifestyle” is ghastly and judgmental. It’s also bad science (which is a whole ‘nother rant for another day). It closes doors, it casts aspersions, it brings despair, not hope. Such proclamations feed the curious beast of guilt, and “otherize” the person suffering.

In so many areas of life, we really are all it together. We can’t have “other”. We need to be “we”, not “us and them”. Only by standing together can we face the darkness. Selling guilt, blaming cancer on those suffering from it, puts me over the proverbial edge.

I think the best plan for “Wellness” springs from the idea of solidarity, of standing together in all our differences, embracing the moment we’re in and fighting through it together. Guilt and blame are never healthy choices.

At least in our home, we have a far scarier Beast to battle than random guilt. We simply can’t let guilt about the Beast take hold here, or we will be lost. We made NO BAD CHOICES when it came to our family; I have zero regrets about the genetic implications of our current crisis. If I let guilt in, healing recedes far down the road to madness. We need to embrace the moment we’re in, even if it feels like hugging a cactus, and make the best of things.

I am deeply grateful for those many, many people who HAVE joined in solidarity with us, who accept our situation even though it defies reason, who encourage us and look out for us, and never, ever blame us for the catastrophes we face. With you, we will beat the Beast.

In the meantime, I know there’s so many of you I haven’t talked to recently…I feel really bad about that… ; )

Anonymous Chocolate and Other Mysteries of Life

Your moms all said it at some point: “if you don’t have anything nice to say, don’t say anything at all”. Generally, I suppose this is a good approach to life. But sometimes, there just ISN’T anything nice to say. Nothing. For days and days, not one nice word pops into your mind.

It’s been that kind of season here. I have an entire dictionary’s worth of NOT nice words floating about in my head. But as mom/wife/sister/daughter/friend, silence isn’t often an option. And when I do start talking, the unprintable torrent can
easily spiral out of control.

Likewise, I don’t expect anyone to come up with Hallmark-esque cheerfulness for me. Sometimes there just isn’t anything nice to say.

I am really, really trying to keep this from becoming a blog about our pet Elephant, the one that stays in our living room and takes away all our nice things to say. But he has a compelling way of getting into all of my business. And when he shows up, all other little things tend to go wrong, which does not help my vocabulary.

Since I have nothing nice to say, I tend to hide, and type, and wander around my house, thinking unspeakable things about that blasted Elephant in his ill fitting muumuu, sitting on my couch and leaving crumbs Everywhere. I know people find the Elephant disturbing, some find the Elephant super confusing, people who know my family well find the Elephant very upsetting. Heck, I think a few folks I know like to ignore the Elephant. I wish I could. Instead I hide, and hope that things will work themselves out.

For the record, for everyone who ever has a friend with an Elephant: we know there isn’t anything to say to make it better, there isn’t any good word that will take the Elephant away…that’s ok. We appreciate any kind word, any little word that lets us know you care. If you can’t talk about the Elephant, that’s ok. We understand. Just being a friend is good enough.

I deeply appreciate the friends and family who shop with me, or drag me out of my house (even as the Elephant is yelling after me), or just talk to me about zucchini. Really. It’s enough.

And then, sometimes, there is a brilliant mysterious moment…

Enter Anonymous Chocolate.

The box arrived with no return label. It was big, and it contained a Styrofoam cooler. I was intrigued. I have kind of a problem with internet shopping (oh, Amazon, my downfall!), but I have managed recently to mostly limit my purchases to books and supplies for school. Certainly uniform polo shirts would NOT come in a cooler.

With a squeak the lid released from the bottom…and there was the Biggest Hershey Kiss I ever saw, full of little Hershey Kisses…next to the biggest Reese’s Peanut Butter Cups I ever saw.

Yes, there was almost an angelic “aaaaaaaaah” in my kitchen.

I lifted up the ice packs, squeaked the rest of the cooler out of the box…there was NO paper, no invoice, no record of who sent this pile o’ joy in a box.

I looked around, as if someone would pop out from behind a door and say “ta da! Surprise!”…but of course no one did.

After a suitable few minutes of almost unspeakable awe, I turned to that bastion of information and networking, Facebook…while folks “liked” my status, nobody ‘fessed up to sending this delight.

My daughters came home from Grandma’s and were instantly agog. My older girl kept trying to figure out WHO could have sent the box.

Finally I had to explain that Someone wanted to do something sweet (!) and kind for us WITHOUT letting us know. We just had to accept the joy and love this Anonymous Chocolate represented, and say a little prayer for whoever sent it to us.

Anonymous Chocolate is a rare delight. The very rarity of it makes it even MORE delightful. There’s something kind of unnerving about it, but in a happy kind of way. Not only was this chocolate anonymous, it was GIGANTIC.

I have to admit, we haven’t eaten it yet. It is sitting majestically on our kitchen counter, a testament to someone who maybe didn’t have anything nice to say either, but used the universal language of a hidden act of kindness to express love.

Thank you, Anonymous Chocolate sender. That chocolate is so big it does sometimes obscure the Elephant…or at least lets us know that whatever happens, we are not alone in this season.

And that is something nice to say after all.

Cleaning out my Closets

the picture is my 8 year old's bed. note the shoe box lid and the softball mitt... ?



I find shows about hoarding inspirational.

I know, that’s alarming. My husband, a Neatnik par excellence, is appalled that I watch these shows. Granted, our house is cluttered, but we don’t have 57 birdcages or paths carved between boxes or mountains of garbage anywhere. Except in my teen’s room, but that’s another story.

Still, when I see these sad shows about people who are paralyzed by stuff, I feel motivated to clear out the clutter I don’t even know I’ve held on to. While my spouse claims Nothing In This House is His, as soon as I try to purge baby clothes or stuff that the kids owned when they were tiny, or the tattered copy of Raisin in the Sun he had to read as a freshman in high school, Mr. Neatnik turns into Mr. Sentimental. So I have to use my motivation while he’s at work.

Since my last post I have been once again trying to make progress against years of closets being so accommodating to my emotional inability to get rid of some things. I also suspect that in a previous life I must have survived (or not) the Great Depression, I always feel like Things Could Be Useful. Just often enough, they ARE, and this simply enables my mini-hoard.

Back in November/December I dug through old boxes of fabric to find the material I used to make maternity clothes when I was pregnant with my teen & my tween (now maternity clothes are Super Cute, not so much the case in the mid 90s)…and I used the dang floral and knit stuff to make American Girl doll clothes for a Christmas gift for my girls. Voila! A Rationale for my Hoard!

Still, I really, really like things to be clean and neat, and my brain functions MUCH better when the clutter levels are low. But just because I’m motivated doesn’t mean my KIDS , aka Heaps, Spreader, and Squirrel, are all equally on board with my Tidy Plan.

I find, too, that cleaning out closets really is a trip down Memory Lane. Some memories are happy ones, like finding my teen’s first Yankees outfit (in newborn size…it is so adorable), or discovering a ticket stub from a long ago trip to Broadway. Unfortunately, there are a lot of hard things hidden in closets. Maybe that’s why one famous rapper refers so darkly to cleaning out his closet. He wasn’t talking about cute outfits and ticket stubs, but the scary, hurtful things that we bury.

I hold onto stuff. I know it. Sometimes by holding on to THINGS, it helps keep pain at bay. But healing requires facing things, too. To quote a song my daughter is blasting in my house at this very moment, This is Where the Healing Begins…where light meets the dark.

Recently life has kind of raised the Joystick of Smite at our family again. I think every family has this experience at some point, we just kind of specialize in long drawn out smite. Either way, I now have a tv style deadline to de-clutter. I finally got the little baby clothes down to one sentimental bin (although there might be one more in the attic. Oops), I organized all the gift wrap, managed to fit the baskets for next year’s big fundraiser INTO a closet (instead of all over the basement & guest room), cleaned out my sock drawer, aka The World’s Most Futile Task If you Have a Hungry Laundry Room that Samples Socks…I have been busy, when I’m not wandering vacantly around my house pondering smite.

The point of all of this is that I finally at least attempted to de-clutter The Box. Probably every family has some equivalent of The Box. Even here it’s really a white basket, one see-through file thingie, a few books, and 3 magazine holders. The Box is like mixed martial arts. Some of it’s cool to see, but there’s a punch or a hidden kick that’s gonna come when you least expect it.

Honestly, the magazine holders only got a cursory glance. Some of them I had organized a few years ago, filing one failed plan after another in manila folders, bringing at least paper order to emotional and physical chaos. There are a few old calendars which I didn’t open. I know what’s inside, the daily record of a particular season of our Long Smite. The medical info in those magazine files stay.
The slant board, Braille work book, and foam Braille cell got put in the top of a closet. I don’t need those now (although the slant board would likely still be helpful), but I NEED to save them. Those are evidence of a small miracle, of eyes that literally were nearly blind and now see. Not perfectly, but they see. The Braille stuff stays.

Facing the white basket with the see-through file thingie and the photo box was bittersweet. In this box are the emotional records of our first active go-around in the Long Smite. Cards upon cards…scribbled pictures on hospital letterhead…notes from a pre-Make a Wish shopping trip…a Braille Mother’s Day Card…a picture of SpongeBob for a friend who succumbed to the same smite we fight, as well as elaborately stickered posters that same friend made for my daughter. A manila envelope full of addresses for thank yous I never wrote, to people all over the world who sent hats to my little girl.

A week ago, when we returned to the hospital, we brought a bag full of unworn hats from that time to donate to the kids in the clinic. Another bag waits for winter.

Admittedly, I did have the thought that perhaps bringing unused hats on a scan day was a bad idea.

Still, the Box holds more than cards and pictures. There’s pain in the Box, for sure, but there’s so much love. Love from people we didn’t know, love from friends we only know because we share the same pain, love from family and acquaintances, love from people who just happened to hear about that kid who needed encouragement and thought they should do a good thing.

When I look in the Box, I see the goodness of people that sometimes is so hidden in modern society, in berserko style Jersey traffic, in customer service calls gone awry. The Box holds goodness and love.

My child wants to look through the Box again. Hopefully in looking there SHE can draw the strength she needs for whatever lies ahead. Again to quote that loud song, “grace collides with the dark inside”…the Box does have grace within. I truly hope this IS where the healing begins. The Box stays.

I guess I’ll stick to purging t-shirts and working through the multitude of scrunchies in my girls’ room, and leave the Box alone. Maybe my spouse will finally let me get rid of that copy of Raisin in the Sun…

I Have Been to the Mountains...

I figure by now the consensus is likely one of the following options:

a. I did NOT survive the Jersey Shore Relay, I simply got washed out with the tide.

b. I decided while in Seaside Heights to embrace my true Jersey Girl Self, call myself K-Mom, and start a reality show about people who don’t really drink, never go to bars, have natural volume to their hair that they try to subdue daily, and get sunburned way too easily to hang out at the Shore for long.

c. I was so flummoxed by trying to run that I headed off course and am still somewhere on the Turnpike murmuring “what exit? What exit?” to people driving by. (1)

d. I actually SURVIVED the Jersey Shore Relay, Basked In My Own Glorious Survival, Marveled at NOT dying on the course, and then Collapsed Utterly Wordless for 3 months.

Note (1) for true wannabe Jersey folks, this would take SOME wandering, as it is of course the Parkway, not the Turnpike, that takes us to the Shore. Not the beach. The Shore.

I did survive the race. Actually, I kicked some race bu…ok, let’s not get crazy, I survived. It was wildly emotional, physically yikes, and surprisingly satisfying. I still hate running, but running for a cure for NF, this maybe I could do again.
We’ll see.


This has been a season of mountain climbing, figuratively, for me. Maybe I’m prepping for being officially grown up in less than a year. I always hoped I’d grow up to be Aretha Franklin. I still have my fingers crossed on that, but things don’t look promising. Growing up is hard to do.

Anyway, in May I got back on an airplane for the first time in 15 years. This was a mountain of Everest proportions for me. I have a deep seated aversion to altitude, far more deep than my aversion to running. If I collapse running, police could figure out who I was pretty easily, I wear an ID on my ankle. (http://www.roadid.com) But collapsing from 35,000 feet? Ugh. I left a toothbrush at home in case investigators needed DNA evidence to figure out which pieces were me if we didn’t make it. Really, I did.

Without going into the 2.5 hour delay with thunderstorms followed by 6 hours of eek that constituted my flight, I can now say I survived that too. I might even fly again. To Florida or points closer. No more West Coast for me. At least not without medication. The theoretical “big girl pill” does not have the clinical strength of an actual pill. I have learned that the hard way (see “6 hours of eek”). But I got through it, and I’m glad I did.

At the end of that airplane ride was an adventure, the Golden Gate Bridge, astounding mountains bigger than any I’ve ever seen (or driven over, YIKES! What is it about guardrails that folks out west find so offensive? Eek!), a beautiful wedding, a new sister in the family. Just like the race, the plane ride “mountain” was ultimately totally worth it.

I’m not sure what mountain is next. Maybe a class trip with 22 high school seniors to our hospital city? Maybe just getting through our next medical moment? I’m not sure. But I will keep climbing mountains, or at least scaling hills, or stepping over speed bumps or something. The morass of my own head tends too often to suck me in, and I lose my ability to write things out. But even though I may never be the Queen of Soul, or feel like a Natural Woman, I plan to keep moving. Even little mountains count for something…

Even little mountains like putting backside in chair and writing a blog entry…

Folly and the Secret Weapon

In mental battles with myself, I tend to lose.

Be it “don’t eat that cookie” or “really, clean the bathtub already”, or “have you ever noticed you’re shaped like a pyramid? Or a Thomas’ English muffin…’bigger on the bottom/smaller on the top’”, I invariably succumb to the battle inside.

Somehow I thought I would outgrow this. Somehow I imagined that after the Fest o’ Insecurity that was my teen/college years I would emerge as a confident, outgoing, accomplished person.

I’m not sure why I thought I would stop being ME, but I kind of hoped it would happen.

A lot of years have gone by since the Fest, and it’s hard to pinpoint whether the things I hoped to do and haven’t are because of circumstances in my life (an easy culprit), or because of Me. Most likely it’s a mix of both.

I have come to see that MOST things in life are a mix. Most things are not black/white, good/bad. Everything is complicated. Except Cadbury mini-eggs. But those can’t really be quantified as a Life Issue.

I found an old diary of mine the other day. I was a little alarmed (and kind of amused) to see the extremes of my teen years spelled out in loopy script. Some entries were funny (I refused to call my first diary a diary, it seemed pretentious, so I referred to it as Book), some were sad (my friend’s little brother died in a freak accident) and some were just …teenish (apparently I have been perfecting Neurotic over a LOT of years). But everything was passionate...even if I did see most things as all the way right, or all the way wrong.

So here, at the brink of Officially Grown Up (only one year left), I have to pick a battle and win it. I just do. Circumstances didn’t kill my passion, they just redirected it. And I am ready to go. Ish.

Maybe I didn’t choose my battle so wisely. Maybe I should have found a crafty or academic kind of mountain to climb…no, I decided on Kilimanjaro. This Saturday, I am going to run the middle section of the Jersey Shore Relay Marathon.

Granted, my great contribution is a measly 4.2 miles. A neighbor who is a hard core runner needs a training run for her next half marathon, so she will do the first 11 miles, and my spouse, also a hard core runner, will do the final 11. I figure they can both go get pedicures or something in the l-o-n-g time it will take me to get down the middle of the oceanfront race course.

It seemed like such a good idea at the time…but then my mental battle began. We only registered a week ago, and the race is SATURDAY. Like, the DAY AFTER TOMORROW!!! YIKES!

I’m not a runner. I have plaguing knee issues, and I am utterly self conscious about how I galumph along (it ain’t pretty). Especially in sports clothing, my physique is, um, Giza-like. I hate how funky you get after running (nasty). I can’t stand how you can run for what seems like an eternity and then realize you’ve gone half a mile. What is that about? I run at glacier speed…seriously, global warming happens faster than I complete a 5K. And now I know it’s supposed to be only 58 degrees and maybe raining on Saturday, which only adds to my misery.

But I do have a secret weapon against the voices in my head that form a continuous refrain of “are you NUTS???”…I have something I hope can carry me through the moments on the course when I don’t feel like I can go farther.

Genna. Rosie. Dave. Sandra. Nora. Gabbie. Drew. Joey. Ann. Siobhan. Emma. Katsie. Julia. Gigi. Arianna. Aidan. Meadow. Ryan. Jenna. Ashley.

The names are my secret weapon.
We are running as part of the NF Endurance Team. http://nfendurance.com

In training today I tried a new system, a run/walk thing that helped my knee and improved my speed by nearly 45 seconds a mile. I only used music, not tv (I run on a treadmill). And when things got hard, I spoke the names…

And you know what? Maybe I DO look like a pyramid with legs. Maybe the IT band brace does make my leg look like an albino sausage. Maybe I am uber-caucasion, sort of a slow motion White Shadow careening along like the Tin Man without his oil. Maybe I am.

So…Flipping…what?

Just say the names.

This is one mental battle I refuse to lose.

If it does rain, I will wear a silly SpongeBob hat in honor of our friend Sandy…rain or shine my girls’ faces will be on my shirt…and the names of our friends battling NF. And I will use my Secret Weapon early and often...

Just say the names.

Who knows? Maybe this little 4.2 miles will give me the boost to attempt Everest in September, the Philly Distance Run, a half marathon with hills and everything. We’ll see…anyone wanna be a running buddy?

Regardless of the future, I am determined to win this skirmish against myself…and show my girls that momma’s actions can be louder than the voices in her head.

I just can’t forget to pack myself some post-race mini-eggs…

Jerseylicious

A new television show aired a few weeks ago, Jerseylicious. I cannot say I watched more than 10 or 15 minutes; and even those minutes I regret. But seeing so called Jersey girls snark at each other over big hair and fake nails while their boyfriends call for another meatball did kind of intrigue me. I know, there are other bigger shows that make Jersey look like a soap opera drowning in alfredo, but THIS show happens to be filmed about 12 minutes from my house. I drive by the place all the time (there’s a Dunkin Donuts close by…and yes, I know the location of every Dunkin Donuts within a 20 mile radius of my house, I think!

Anyway, those other shows were ok, because those were not in my neighborhood (and heck, the one more famous Jersey show on MTV recently is populated by New Yorkers, so do with that what you will). But this…come on! I’m a Jersey girl born and bred. I have never worn pleather and fish net stockings two sizes too small, or earrings bigger than my first car. I grew up in an Italian neighborhood with some of the kindest, most generous people you’d ever meet. I may enjoy some snarky commentary, but screaming fights in parking lots? Not so much!

People can do what they want…but to say that this portrayal of Jersey is all that is Jerseylicious is a little annoying to me.

About the same time this show aired, we discovered a new obsession at the Casa Camiolo: The Duke Farms Eagle Cam. On March 27 or so, a pair of bald eagles in Central Jersey—about 20 minutes from the salon featured in Jerseylicious-- welcomed 2 new babies…and the folks who run the Duke Estate managed to mount a webcam on a tree overlooking the nest.

Duke Farms Eagle Cam - Duke Farms

Now THIS is reality tv.

The nest is a massive construction of twigs and sticks and softer grass in the middle. Eagles are not the junior miss petites of the bird world, and the parents bring back entire animals for the babies to eat (which is wildly impressive, I have to admit: to see a bald eagle fly to the nest with a 12 inch fish, then pull tiny bits off and gently feed it to the babies…incredible!). We are mesmerized, even if the babies are getting increasingly weird looking. Bald eagles take a while to look cool, their awkward phase rivals mine (which was epic and some days is unclear if it’s over).

My youngest child eats breakfast with the eagles each morning…we put the laptop on the table, she eats her cereal while the eagles eat carrion. Ew, but cool.

There’s something about the parental instinct of these mighty birds that is awe inspiring. They are so gentle with the babies. We had monster rainstorms here again last week, and all day the momma eagle huddled on top of her babies, keeping them safe and dry even as she looked more and more miserable. The dad eagle takes a turn sitting sometimes too…and now, as the babies are getting so much bigger—in just 10 days!—the parents spend more time next to the young birds (instead of on top of them).

The whole thing is a microcosm of child raising, and it resonates with me—the nice parts, not just the moments where sitting on the kids seems reasonable.

And look, here’s a family that got the kids to eat sushi!

So we haven’t watched anymore Jerseylicious since the first episode, but every day we check in on the eagles about 27 times. This real life nature miracle, with birds so majestic, and so close to our home, kind of makes that other Jersey stuff ok. Let people think we are all bad stereotypes of Italians. Let the secret of the real New Jersey stay secret, and the birds can raise their family in peace while tv cameras capture the “reality” of a salon in Greenbrook.

Just like my own kids, no longer babies, those eagles will fly soon from the nest to find their own way. And I will drown my sorrows in sushi…and who knows, maybe I will find solace in pleather?

Time will tell. Now, back to check on my eagle neighbors while this show is still airing!

The Truth Swims Out There

My husband rarely watches television.

So one night last week I was a little surprised to find him engrossed in a tv show. I was vaguely awake on the couch when I realized D was in the room, too, paying close attention to the screen.

“The USOs were about half a mile long, my compass was going CRAZY,” the military looking guy was saying.

“A USO??” I asked D. I used to have an unhealthy fixation with acronyms, so I had to work this out. “An Unidentified…Submerged Object??”

D didn’t know, and anyway he was busy listening to the gentlemen on screen were engaged in a very dramatic discussion about this mysterious (apparently government secret plottish type) object. I was right: it was an Unidentified Submerged Object.

In retrospect, hysterical laughter might NOT have been the appropriate response to the story unfolding onscreen. Maybe my stress last week WAS a tad high. But really, a USO? A giant thing cruising the oceans secretly at the behest of Shady Government Forces? It just amused me. A lot.

I’m as Mulder & Scully as the next gal. In some cases, I do think “The Truth is Out There”. But this…giant silver hot dog of the sea…I’m still chuckling about it.

The only thing that came across sillier than the premise was the cheerful paranoia of the “researchers” on screen. (“I want to just walk right up to the gate (of the military complex) and say, Show us the UFO!” the guy in the camo gear proclaimed…which got me laughing again…as did the guys getting nervous about the creepy military helicopters flying over. Over the military base. Yeah, creepy.).

D was not as amused as I was. The more amused I got, the less amused he became. Bwahahaha…

Then I started thinking about other shows that could be made around this same idea…

The UTO…”I had no CLUE what the thing was, but it looked pretty juicy, and I just couldn’t help myself; I had to take a BIG bite. WOW! That Unidentified Tasty Object rocked my taste buds!”

Or the UNO… “I swear, that thing had been there on the hammock for HOURS. There was some snoring, and the occasional grunt…I knew then that there was an Unidentified Napping Object in my yard…and I bet I know who’s behind this!”

Or one we often have in our house, the UGO…”it was nasty. Just nasty. Kind of sticky, and a funny color, and it smelled a little weird. No one will admit to spilling anything, nobody knows WHERE it came from…but this Unidentified Gross Object definitely needs to be dealt with”.

Any other unidentified objects in your world?

Looking at my own to-do list, and the state of my floors—way too many UGOs there!-- I better get this UPO (Unidentified Procrastinating Object) off the computer and back to work!

But keep your eyeballs peeled…you never KNOW what may be out there…

Printer Error Connection Disabled...of course.

The Lost Speech, aka The Document that Wouldn’t Print

I am determined to keep putting SOMETHING on this page at least 2x a week…so here is the rough draft of how I meant to introduce the fundraiser our family runs for the Children’s Tumor Foundation. While this blog is in many ways an attempt to reclaim a part of my life that existed before 2004, events since then just have a way of sneaking in everywhere.
*********************************************

NF.

Scientifically, it means neurofibromatosis, a genetic disorder that occurs in 1 in 3,000 births. A disorder that sounds scary. A disorder that IS scary…and hard to spell. A disorder that can cause tumors to grow anywhere in the nervous system. Scientifically, NF is a puzzle, a genetic enigma that varies from case to case, a gene gone awry on chromosome 17. To researchers and doctors NF is a tantalizing and troublesome problem that intrigues and confounds.

For the Children’s Tumor Foundation, NF is a mission. More accurately, solving the NF puzzle and imagining the possibilities of that solution drive the work of the foundation. The Children’s Tumor Foundation provides a positive answer to NF. Our favorite part of CTF is NF Endurance…Dave will talk about that later… The NF Endurance arm of CTF gives a tangible way for extreme athletes or runners, or active people or…well, anyone who has sneakers or …a pulse…or with a flair for wearing neon yellow… to push themselves beyond their physical limits to raise funds for CTF’s mission.

Personally, NF isn’t a puzzle, or a possibility. It’s my family. My spouse. My daughters. NF is deeply personal for me, and obviously our whole family. I take NF personally, I despise the assault it has waged on my children. When I dreamed of being a mom, I had never heard of NF. I never dreamed of spending any time with my children in a pediatric oncology unit. Never . I resent how NF has glomped my expectations. Some days for me NF means NOT FAIR, or Numbing Fear, or any number of weird acronmymic translations. NF has an unwelcome say in my future, my family’s future, my children’s future.

Now you know why I’M scary…

But NF doesn’t define us…we may bend sometimes before the ravages of this disorder, but we will not break.

We depend on nights like this where we stand together in hope and defiance—even if that defiance is shaped like a spritz cookie. I think HOPE is just that: an act of defiance in the face of yikes too ginormous to face. Nights like this transform NF for us. Tonight, NF means new friends…we are so honored to have some of our NF heroes from other states here tonight. NF means NOT FINISHED…until we have treatments that work, we won’t stop eating cookies…and You KNOW I mean that…NF means Never Fear…never fear the unpredictability, the unknown, the negative possibilities that are only a doctor’s visit away for NF families.

So tonight, we are grateful for this unexpected consequence of NF, the good that comes out of something so bad. We are grateful for all of you. Thank you for joining us in facing this disorder and fighting for a cure.

peace out--
to learn more about NF, check out www.ctf.org
for our NF story, visit www.caringbridge.org/nj/gennahenna
for lots of great cookie recipes, visit your local library.

Next on Storm Stories...

February in Jersey is grim.

When I mentioned this the other day, my spouse helpfully pointed out that it is March—which I know, but still: February in Jersey is grim. Gray. Gloomy. Depressing. It bears repeating.

But this February was different: we had snow!

We missed the epic snow of south Jersey and the mid-Atlantic, but we had two ginormous wallops of snow, enough to have a six foot snowman still standing guard by my back door.

I have mixed feelings about meteorology. I find the study of weather intriguing; my “Clouds” project in 6th grade was thorough and beautifully illustrated with a rainbow for good measure. But here in Jersey, I have to take meteorology with a grain of road salt. Here, we have a lot of sound and fury signifying nothing. We get breathless predictions of Snowicanes and Snowtastrophes and Snowpocalypses. The evening news sports live team coverage from all corners of the state broadcast by reporters who look like they are dressing for the Iditarod or a South Pole expedition.

Granted, even my 7 year old wanted to make sure the winter coat I got on clearance for her for next year has the ski goggles wipe, the cell phone pocket, and the Ipod pouch. She has none of these three things, she doesn’t ski, and the highest mountain in Jersey is about ¼ mile above sea level. Maybe my Rosebud has a future as a weatherwoman, she could carry the Prepared for Every Contingency Wardrobe thing into a career.

But, um, this is JERSEY, not Saskatchewan. We do get the occasional big storm, but really, once the plows and salt trucks are out, it’s not a big deal. Unless the Weather Channel sends Jim Cantore to Jersey, I don’t even bother to look for the snow shovels. So I should know better when the menacing music and “Snowzilla 2010!!” screams across my tv screen, right?

Right. I should. But…

…I think somewhere, deep down, I am still 12 years old (very deep, I know). Secretly, I think snow days are awesome, heaven on earth, a break, a woohoo of being trapped away from our responsibilities. Snow days are gorgeous… when Mother Nature wins, we should all enjoy her victory!

Or maybe because I was a teacher, the anticipation of a snow day is part of who I am. In all my years as stay-at-home mom, it’s not like a snow day took me away from responsibility—my work was at home! But still, 8 inches of snow is freeing even as it binds us to our homes. We drink hot chocolate and watch Full House reruns and bring out the yardstick to see how things are piling up. We track snow all over the house, find mittens we haven’t used in months—the waterproof kind, not the stylin’ kind. We watch the exuberantly suffering meteorologists on tv and enjoy the respite from carpool-mania that is our average weekday reality.

So I take it personally when the gleefully dire predictions of our weather people don’t pan out. I feel like I’ve been set up, robbed, all my delicious anticipation of NOT getting reluctant kids out the door to school morphs into disappointment. NOTHING is worse than thinking you’re getting a snow day and then having to schlep out in a soggy chill for school or work. Nothing. Extend this over a month, throw in some gray skies and damp chill, and you have Jersey in February.

Thus I am grateful for the 2 Snowdangos we had this winter (and the remnants of snow that gave us a white Christmas). Two Real snow days, so bad that even my spouse couldn’t hitch up the dogsled and go to work (he is very determined). I am grateful. And maybe, just maybe the snow will stick around until we have actual warmth, a few crocuses peeking through. I hear it’s supposed to be 52 degrees on Sunday. Maybe we can skip the Jersey gloom that mostly got snowed over this February and jump right into spring.

I’d like to see the meteorologists invent a word for that! : )

All Quiet on the Eastern Front

"A little less noise there! A little less noise!" --Peter Pan

I’m Catholic. I "do" Lent, the 40 days before Easter. I try to make some kind of little (generally microscopic) sacrifice so I can think more about God, life, the bigger picture, etc. Sort of a spiritual de-cluttering. At least in theory that’s what I do. The years of giving up snacks or chocolate are ancient history for me. I didn’t even entertain the idea of giving up coffee for more than the 20 seconds it took for me to envision Humanity v. Me Uncaffeinated. Scary stuff.

Life has lived me for too long. I’m ready to switch that paradigm around so that I’m the one living life. The noise and stress and mayhem that follow in my wake are what I’ve decided to give up for Lent this year. I am giving up NOISE.

I know there have been studies and confabs and such about how today people are so over-stimulated they’ve lost the ability to think critically and coherently and make intelligent decisions. Sound bytes and drama and texting and Youtube leave no room for thinking. People let life live them, instead of the other way around, often simply because the world is too much with them in the tv, radio, internet, cell phones, Blackberries, etc. Sight and sound clutter are so pervasive.

We’re just so connected and constantly ON, we don’t have room to think about what the heck we are even connected to, and why?

And lest this come off sounding like I’m on a holier than thou soap box, I did take time last night to show my sister the Muppet version of Bohemian Rhapsody on Youtube. So funny.

ANYWAY, I am looking for quiet reflection this Lent.

This should be easy. My three kids are in school all day. My spouse is a quiet guy. I’m not teaching right now, so I have roughly 7 hours each day where I am Utterly Alone. I should be a guru by now, with all the moments I have for meditation. Or I should be organizing my paper clips or performing some other Martha Stewart-esque Feats of Domesticity as I reflect on the Deep Meaning of Life.

Yeah…I should.

But I am seeing the truth of the old phrase, nature abhors a vacuum. Honestly, looking around the rugs in my house, nature apparently isn’t the only one who abhors a vacuum. My nature also apparently abhors silence. Quiet is hard to pin down. Normally I play music, shuffling through my Ipod, listening to YoYo Ma, then Little Shop of Horrors, then Evanescence, then Popple. I put the tv on just to have some background noise. I find myself singing, or tapping, or humming. Heck, I’ve even vacuumed, at least it makes some noise in my quiet house.

Quiet is hard. Noise is easy.

Quiet forces me to think, to face the things I’ve tried to sing show tunes over for the last several years. At some moments I am tempted to find thinking overrated. The quiet place is not without its mental perils.

In the quiet I realize just how noisy the INSIDE of my head is. I suppose that’s a good first step, but it’s not a pleasant realization.

I am seeing some positives to my attempts at quiet. I actually read a BOOK, an honest to goodness BOOK WITH PAGES the other day, one that opened my eyes to new ideas about how we perceive the world and how we are perceived (Double Take, by Kevin Connelly). I finally cracked open another book about prayer that some friends recommended. In the quiet I have enforced during my endless hours as chauffeur (oh, how I miss my radio!) I have noticed the farms and country roads along my tedious ride. I am seeing some benefit to quiet, as elusive as it may be.

And really, as soon as my children come through the door, sound returns to my home…not noise, not random decibels that clutter my mind, but actual sounds of kids who Have Important Things To Say, and Insist that Mom Listen. I’m finding if I’m quiet during the day, it’s much easier to hear my kids when they come home, to be the mom I signed on to be.

Granted, I’m one week into Lent. I have already rationalized my cheating on the noise front about 6 times (if I’m doing something for a charity, listening to music is Helpful, thus beneficial to the common good…sigh…I am as bad at this as I used to be when I’d avoid chocolate for 40 days). But I am determined to try to find that elusive silence, because I know in the quiet I can regain lost ground, conquer demons, and maybe think of things to write about here!

But now I have one more charity basket to wrap…shhh...

A Toe, then a Foot, & Maybe a Leg

Moving Right Along...

I hate cold water.

When I was a kid, my sister and I took swimming lessons each summer at the local pool. The lessons were always held in the morning, and somehow even in July in Jersey, the air was chilly. And if the air wasn't chilly, you could bet your bright green Speedo that the water would be COLD.

Normally my entry to the pool would be as slow and excruciating as possible. Clinging to the ladder, I would cautiously put one toe in the water, then slowly my whole foot, and then, if I could stand it, a leg. The other leg obviously had to follow...and then I would oh so painfully tippy toe through the water as it passed the small of my back (oh, the agony!) and finally I would go under, the cold flooding through the rest of my flailing anatomy like a shock.

Granted, during swimming lessons the teachers-- drowsy teens blinking in the inordinately early sunshine--the teachers never offered my slow and painful water entry as an option. We just had to jump in. The shock would happen all at once, and then I'd have to keep moving so I wouldn't turn into a kidsicle. I hated that.

Fast forward 26 years...and here I am, at the side of a pool again.

This time the pool is a blog. And I know that's silly, and melodramatic, but the feeling is kind of the same.

I've always dreamed of writing. Ok, I haven't just dreamed: I have written. People have given me dollars for words I've put on a page, so I suppose the dream did at some point cross from "I wanna" to "hey, I am!". But then life happened. I know, life happens to everyone. Excuses are easy, and I know EVERY easy excuse. As a writer I can get extra creative with excuses. It's a blessing and a curse.

My pursuit of writing was in its infant stages when life stopped just happening to me in its odd distractions of kids and motherhood and laundry and minutiae. The "I'll write when..." excuses all got swept off the table. LIFE HAPPENED. The cataclysm that flung me out of the writing pool is another story for another day, but suffice to say, things fell apart in such a way that I couldn't see the water for the mountains that needed to be scaled.

The landscape of my life is different now than it was in 2004 when I gave up the dream. I'm older, (it happens) and if I'm not any wiser I am at least determined to make sense out of the place I find myself in today. My children are older. My marriage is older. I am working at returning to work after a long hiatus. So much is different...but the pool is still there. And even though I hate cold water--and really, I STILL hate cold water--the lure of the pool is strong.

The purpose of my writing has changed in ways I'm still not sure of. But I know that I have to get in the pool, even if it's one toe at a time, before I can start swimming again.

To quote my favorite movie, I'm "movin' right along"...and I hope it does become a habit.