To the creators of "Warrior Eli", a few things you should know

The story of Warrior Eli went viral on Mother's Day--telling of a mother of 11 who died in an accident just before giving birth...one of her children is a relapsed cancer survivor named Eli.  By today, this story was revealed to be a hoax. 


To the creators of “Warrior Eli”, whoever you may be,


I don’t know why you thought it would be fun to create an elaborate myth about a child with cancer. Maybe you were inspired by Lifetime movies or Grey’s Anatomy or some sort of dramatic fiction that makes childhood cancer seem c’est tragique. Maybe you thought it would be funny to see if you could get your sad story about a young mother of 11 dying just before giving birth, while one of her young brood battled leukemia, to go viral. You don’t seem to have wanted money, since you asked for donations to go to Alex’s Lemonade Stand, a legit charity for kids who really do have cancer.

Honestly, I don’t really give a crap about why you did this.

And honestly, this isn’t the first time I’ve witnessed this. I, too, have believed a liar in the past, sent gifts to a phantom child. I learned from that experience.

Now it’s your turn to learn a few things.

One, most people are good, deep down. Parents of children struck with catastrophic illness can be some of the kindest, most generous people on the planet. This isn’t to say we need to start handing out halos –people are people, no matter how smote-- but folks who have walked through fire are the first ones to hand out buckets of water, if you know what I mean. When they hear that someone is facing the same tragedy they have faced, the FIRST instinct is to help, to assure the new family that they are not alone. They hurt FOR each other, because they so intimately know that pain that this kind of diagnosis brings. Even though it hurts to engage with other families sometimes BECAUSE of this shared pain, these parents do that.

So when you lied over time about “Warrior Eli”, you hurt real warrior parents. You should know that. You took the grace that these parents have to give, and you made a mockery of it.

Shame on you.

Second, your lies, your desperate appeals for the sympathy and concern of strangers hurt the real warriors, the children truly battling for their lives.

Last week we spent about 5 hours in the Alex Scott Day Hospital, named for Alex of Lemonade Stand fame, named for the money raised by the lemonade stands that funded this amazing facility. I sat there, watching poison drip into my child, and I had trouble believing the evidence of my senses. Yes, we were in the hospital. Yes, G was getting her port accessed (which means a ¾” needle stuck in her chest, not sure your “research” for “Warrior Eli” covered that). Yes, nurses double double checked G’s ID to make sure she was getting the RIGHT poisonous cocktail. Yes, my warrior smiled and gave me a thumbs up even though she was so scared, so scared about what the chemo would do.

The entire afternoon was surreal. A friend came to visit us, and I am not going to lie, I am always happy now, after knowing about people like you, people who lie about their children being sick, I am happy when someone sees us in clinic, sees my child like this. If I can’t even believe this is happening to us, why should other people?

You hurt the credibility of real families battling. You made us doubt when we should be feeling compassion.

Shame on you.

As a side note about Alex’s Lemonade Stand, who you dragged along , maybe to give your lies more credibility?: Alex was a true warrior. Because of her, kids like MY kid have a better place to receive treatment. When Alex was battling, the day hospital was a large room with a ring of chairs around a nurses’ station. Now children can have some privacy, if they want. They have working tvs and video games, there’s a playroom and a little kitchen where they can get a healthy bagged lunch while they are getting treated. Alex didn’t live to see this. You insult Alex and her work and the legacy her family has worked so hard to foster.

SHAME ON YOU.

Finally, you need to know that childhood cancer isn’t a means to getting noticed, or a way to look noble and cool. It’s a battle for life. It’s not pretend, or a play, or something you can treat lightly. You want to look noble and cool? Go HELP kids with cancer. Use your creative energy for something GOOD. You used pain and suffering of children for your own satisfaction.
Shame on you.

I don’t think there will really be any tangible repercussions for what you did. You simply lied, and people believed you. You didn’t get money, you didn’t ask for anything, from what I can tell. You simply lied, and stole the emotional resources and compassion of people that could be better used for REAL catastrophe. I do hope that maybe some corner of your mind still possesses a shred of decency, and that maybe, just maybe you’ll take some time and volunteer for Alex’s Lemonade Stand, or in a children’s oncology ward, or with Team In Training in honor of “Warrior Eli’s” leukemia. Maybe you can try and learn just a little bit about the deep truths discovered when you spend time with a child fighting for their life.

If not, then shame on you.

Excuse Me, Your Stress Is Showing...

Excuse me, your stress is showing…




“Mrs. Camiolo,” one of my students called from the back of the room as everyone pulled out their textbooks for class. “You’re…you’re wearing flat shoes!”



Within seconds a full blown discussion of how odd my choice of ballet flats was broke out in the classroom. “You look so much shorter!” called this young lady (who, even when I am wearing flats, stands about 4 inches shorter than I).



I felt some surprise that my students NOTICED. I mean, really, I am an antique compared to them, my wardrobe is practically medieval (remember how old 40 seemed when YOU were 15? Egads!) . And most days I do make a conscious choice to wear tall shoes. I feel like it gives me an edge to be 5’10” in a classroom full of teens. I feel like An Official Teacher somehow, which is kind of funny since so many of the teachers of my youth were middle aged women who wore comfortable shoes and polyester slacks with a permanent crease, men who only had one pair of nondescript “school shoes” , or nuns, who wore the most practical (and often, no disrespect intended, not super snazzy) of footwear at all times. But for me, now, tall shoes = confidence.



Anyway, the moment amused me. I told them that by tomorrow I’d likely be in Converse, because that was just how my week /month/year was going. I did suggest that the Student Council members in my class work to get us a Chuck Taylor day, but I think that just confused them.



And once again, I was brought up short by the realization that yes, my stress is showing.



Granted, stress showing through the choice of flats over heels is really kind of silly. Ok, it’s not kind of silly, it’s uber-silly. But it’s real. I just didn’t have the mental energy to wear tall shoes. I just didn’t care.



I also noticed in the past week that people who know me at all KNOW that my normal answer to the question “how are you?” – “super fabulous, and you?”, is a big fat lie. People who know me less well (or just don’t feel like dealing with lurking drama) just take it as genuine (sigh, I’m sorry), but for the first time in the past week I’ve had folks (who I care about a lot) stop short and be all sympathetic and supportive when I give my stock response.



Hey, even my sarcasm is failing to hide the stress! This could be serious. Houston, we have a problem…



I’m not sure what you do when stress starts to ooze out from every possible crack. Sometimes exercise, vitamins, cutting back on caffeine, praying extra, trying to go to bed earlier, breathing deeply, shopping, eating chocolate, running, listening to music…sometimes NONE of these things even remotely take the edge off stress. Heck, if I hear the song “If I Die Young” ONE MORE TIME in my car, I am going to have a conniption. No joke, 3 times in the past 2 days!



Even trying every zenlike trick in the book, I still feel like I’m crawling out of my skin. My poor 9 year old keeps asking me at church if I’m ok, I look so sad. Aaaaagh! Dang.



For my kids, the ones I gave birth to AND the ones I teach, I have to find ways to keep my zen, even if it means stapling it to myself somehow.

I opted for my 3 inch heels again today, and my sophomores felt better (yes, they noticed). I may just bring an auxiliary cable in the car so I can use my iPod and avoid any unfortunate Band Perry incidents, and maybe I can bake something. Whatever I do, I have to figure something out, because just like a live performance of Nicky Minaj, nobody REALLY wants to see my stress showing.

So…anyone have ANYTHING else that I haven’t tried yet? Obviously the circumstances of life here are kind of epic, so within that context…what the heck do you do so YOUR stress doesn’t show?

Maybe I could go SHOE shopping…hmmm. That could be win win for all concerned…

The Wrong Story

This is ridiculous,
What am I doing here?
I’m in the wrong story!
--Stephen Sondheim, Into the Woods

 Life has been kind of Sondheimesque here recently, with plot twists and ironic turns and moments that probably contain some kind of bittersweet life lesson, hold most of the sweet.

Maybe it’s a midlife crisis, maybe it’s just a reality check long overdue, but I keep getting this weird, almost out of body sense of “How the heck did I get HERE? I’m in the wrong story!”.

I suppose I am supposed to go get Botox or some kind of tuck or lift or implant. If I was a guy (or, more accurately and less gender-stereotypically, less speed phobic) I would get a motorcycle. I have considered the ill advised tattoo. But mostly I’m just overwhelmed a lot of days with the sense of being in the wrong story.

 I know. This is a road that leads to madness. Hey, I did say it was a Sondheimesque season here. At least on the road to madness the way is clear…the light is good…ack, Must. Not. Burst. Into. Song. And the next line is a lie, I DO have fear. Even if this is nowhere NEAR the story I thought I’d be in, this is the one I got stuck in.

Still, in this last week my mother in law gave us a picture book she found somewhere…and it was written by someone in my old writing group, illustrated by another writing group member. Somehow, in 2010, these two wonderful, talented ladies managed to work together (not normally the way things work in children’s publishing), and they created this beautiful book. I was so tickled for them, so happy…

And in the same moment I felt a profound sense of a road lost to me in 2004. That for me has become the road not taken, not because I looked down some path and chose the other, just as fair, but more because our family got sucked into the vortex of the path that Nobody Wants to Follow.

That part of my brain, the children’s author part, went silent in 2004, I held on for another year, trying to write, but I couldn’t, I just had no voice anymore. The story of mine that was included in an anthology last year was written before G got sick. Publishing moves so slowly. And our family’s personal story had no time to wait around for publishing to catch up.

I see friends who still have lots of little kids, and I realize that yeah, that story is done for us too. Friends who have moved on to adventures in other places, with new friends who are happy and cheery and yay, friends who don’t bring an elephant into every room…new opportunities, etc….and we are still here, stuck in the morass of this story we never chose. The house I planned to have…yeah, that story changed, too—and some of that is ok, it’s not all bad, it’s just not the story we anticipated. I know some of this is the Pinterest phenomenon (where you look at gorgeous things and think, hey, I have NEVER knit a cauliflower chandelier out of recycled materials and veggies, I am a failure!) , but some of it is just the realization that the parade really is passing us by.

And really, don’t call the Waaaaambulance. It’s not like I feel sorry for us, I’m just kind of like WHAT THE HECK? mixed with a growing sense of mad. I’m not even sure what I’m mad AT. I’m not sure what to do with this whole idea, other than sing Sondheim over and over. Badly.

 I know that life is fraught with these sorts of moments, I do think God laughs (and not a polite laugh, a mighty guffaw) when we plan ANYTHING. But geez. If I got this book, our story, out of the library, I think it would be like the time I tried to read The Gulag Archipelago. Yikes. I got 300 pages in and said, “you know, there is no way this nonfiction book about Soviet prison camps is going to end well, these 300 pages have been BRUTAL.” And I stopped reading.

Obviously, stopping reading is not so much an option here. So here’s the next moment, figuring out how to make peace with the story where it is.

I know that technically the ending is unwritten, but I really, REALLY don’t like where this story is going. And maybe it’s a midlife thing, but I am kind of whomped with a deep sense of We Only Get One Shot at life.

So how do we work through the story we’re in? How do we make peace with this? How do we take this story, even if it’s ultimately more Gulag than Green Gables, and live it with gusto? People survived the Gulag, and that was WAY WORSE that what we are living. At least our smite is random, not inflicted by other people.

But how do we make peace with this moment, this reality, our shrinking social sphere, the fear that has taken up permanent residence in our guest room? How do we do this?

Or, to quote Sondheim again, how do we figure out, “Who can live in these woods?”

If anyone has insight on this, I’d love to know…humanity will thank you, I am a menace right now, an approach to the story that really isn’t super awesome for anyone…

The Little Pills That Wouldn't

The Little Pills that Wouldn’t

“…And the little pills said, “we cannot inhibit the kinases, not even one”, and they rolled to the bottom of the hill.

But the doctor said, “Little pills, the good little boys and girls on the other side of the mountain are waiting for good food to eat and toys to play with and extreme inhibition of their kinases, also some whomping of their vascular endothelial growth factor if you’ve got the time.”

And the little pills looked at the mountain. The little pills thought of those boys and girls waiting for multiple kinases to be inhibited. They thought of the growing blood vessels and the busy pathways. The pills pondered and thought and pondered and thought and finally said,

“Nope. We will dance the Macarena with the kinases and shower them with VEGF. They will be Kinases Gone Wild, and MTV will send us a contract for a show and the boys and girls will be famous for 15 minutes so they won’t care that big picture wild kinases and VEGF out the wazoo could be a serious problem. Booyah!” And they blasted over the mountain like they had little tiny jetpacks built into their smooth, round selves.

And that is the story of Sorafenib, the Little Pills that Wouldn’t”.
****************************************************************

I cannot fathom why I never successfully broke into children’s book writing.

I know I said I wanted to post more…and then all the words got sucked away. Alas.

But from my cave of seclusion I have come to realize a few things. While I am literally scared unprintable-less by the recent turn of events, the need to be calm for my G has become pretty much the defining feature of our days. That said, here are 10 things that are true:

1. I kvetch about the Polyfill invasion, but a giant stuffed animal is instant gratification for a kid who just failed chemo #4. Giant animal with note linking it to a much loved teacher who passed away from a brain tumor years ago…major bonus points. She smiles…Win!

2. I almost don’t need to hide from humanity, if I go out in public I’m in such a fog I inadvertently walk by people without seeing them, truly without even realizing they are there. So if I did that to you and you did NOT call out “Hello!” to get my attention, forgive me…I wasn’t shunning you. I really didn’t see you. I need one of those “Iceberg! Dead Ahead!” guys. Although that didn’t work out super great either, right?

3. But if you come to our door or call my phone…I am hiding. I am sorry. Talking is hard. Typing, less so. Even if you are carrying 2 giant stuffed animals, one for G and one for her Super Sib. Hey, Super Sib is also a Super Door Answerer.

4. Unless of course you are comparing the merits of Dance Moms Miami vs. Dance Moms Pittsburgh. Puhleeze, the guys in Miami can do pirouettes. The Pittsburgh lady screams. End of discussion. And no, I never watched either of those shows. Ever. I am just guessing. Ahem.

5. To my hero kid, there is a silver lining to even the most craptastic of circumstances. Today’s observation, she realized she can wear heels now that her feet won’t be blistering from the Sorafenib. She added a loud “ALLELUIA!” to that statement. We began looking for silver graduation shoes in platypus sizes tonight. Can I get an amen?

6. Also realized maybe we better practice WALKING in said shoes if we actually buy them. Growing multi-focal tumors + visual impairment + the much longed for 3 inch heels may = ER.

7. When I am really stressed, I don’t eat chocolate. Chocolate is for the lower colors on the Homeland Security scale, like green, blue , and yellow. Once we hit orange, like we did last Thursday…even I can’t eat chocolate.

8. Yes, I had to go look that up, I only remembered the orange.

9. Eventually I get past that and make up for lost time. Did you KNOW Amazon sells a 4 pack of Cadbury mini-eggs for only $10?? A bargain!

10. Even though we are utterly, completely devastated right now, like ol’ Rodgers & Hammerstein pointed out, we’ll never walk alone. We are so grateful to everyone pulling for us right now, and we are so sorry this is causing you all such pain. Seriously, even as we’re getting the results, staring at the screen, both Himself and I are trying to figure out How the Heck Do We Break this to Everyone…

Here’s hoping that the next book in our series rots less than “Sorafenib, the Little Pills that Wouldn’t” …

It didn’t even have good illustrations…

Great Expectations

Great Expectations.

Is the worst book EVER, so don’t worry, I am not going to blog about that.

(Since I was long ago an English major, I can diss major works of literature with impunity, no worries!)

I have been pondering expectations. Maybe that’s an inaccurate way to say it. I have more been realizing that some expectations will never come to fruition (my 18th century farmhouse in the country), some are in jeopardy (will not speak of those here), some are worth fighting for (my history students CAN do what I expect them to do! They are awesome! So…Yeah!) , and some just have to be set free (my paperwork will NEVER be organized. It just won’t. Get over it, self).

Expectations can be empowering or paralyzing, and this is sort of what I’ve been pondering. I had a throw down with someone recently about expectations, mine are high, this person’s are low, and our expectations seem to spill over into every area of our parallel experiences. My high expectations shape my behavior, the ol’ “I believe I can fly….I believe I can touch the skyyyyyyyhiiiiiiigh” (I am so sorry for those of you who will now be singing this all day). I feel energized by high expectations. I feel like a ninja (which is only natural, since of course I am a ninja in heels every day from 9-12:15). I almost feel…optimistic! Sorry-I should have warned you to sit before I threw THAT idea at you. ; ) The person I was conversing with has very low expectations, and that is reflected in their approach to everything, it’s contagious and sad.

I came out of this conversation really bothered. Expectations have a ridiculous amount of power.

I know the month BEFORE we started chemotherapy, expectations were killing us. My poor 13 year old was a wreck of anxiety and dread. I was about the same. The fear of the unknown made us expect the worst. This was paralyzing to both of us, and by extension made things kind of stinky for everyone who lives in this house. Even Santa was bummed out by December at the Casa Camiolo.

Actually starting chemo was a relief. The expectation was worse than reality, even if we have to now admit that even “easy” chemo like Sorafenib rots.

As we cruise towards scan day in 10 days, I am trying to keep my expectations at bay. Generally my expectation of what April 5 will bring keeps me up past midnight and wakes me at 5 a.m.. Who knew expectations have claws that clutch at your insides when your insides really, really want to be sleeping?

We’ve had about 30 of these days before, closer to 40 if you throw in kid #2s forays into the Siemens Magnetom. Many of them have been ok in context, ye olde “stable, with some areas we need to keep an eye on”. A very few have been actually good: “rock solid stable!”. An extremely memorable handful have been trainwrecks of woe—“tumors have grown”…”malignant transformation”…”chemo failure”…”new tumor”. So my expectation are certainly tempered by experience. And I just can’t expect that these 6 pills a day are actually working. That seems presumptuous, somehow. I mean come ON, we are the Camiolos, Harbingers of Smite.

Call it defensive pessimism, call it glass half empty, call it negativity, call it Kristin (or half a dozen other girl names, with 6 sisters I answer to most names), but that’s kind of how it is.

At the same time, I have to be a ninja for my G. And she doesn’t think she has such a bad case of NF. She actually SAID “I don’t have such a bad case of NF” a few days ago…!!! That blew my mind. In her mind, life is what it is, her feet hurt from chemo, she is so very tired, can she have some pretzels, and did Scotty McCreery or Matthew West come out with a new album yet?

And that expectation, that there ARE folks worse off than she is, and her favorite singers will keep on singing…that gives HER power. How could a child go through what G has gone through over the last almost 8 years and NOT be swallowed by despair?
If I can carry that for her, I am glad to be useful as well as ornamental.

I don’t know what to expect next week. Right now my expectation is kind of whomping me. But I also have a secret plan for what I will do if my expectations prove wrong…

It’s big. And it involves God’s greatest natural resource…

Stay tuned.

(because once again I have a delusional expectation of blogging more often, I have to do something with all the stuff that races through my head when I can’t sleep. Thank you, Captain Insomnia!). ; )

silly silly silly silly silly RITUALS.

Life is crazy.

I know, I should warn everyone to sit down before I unload profound and original insights like that.

But seriously, life is so crazy these days, I frequently feel utterly disconnected from everything except my color coded calendar. Neon yellow for kid 1, Pink for kid 2, Blue for kid 3…I used to write school stuff in green but then I lost my green pen. Hospital days are circled, the one medicine day I tend to forget now has B written on it…my calendar is a dictator waiting to be overthrown.

If only I had the energy to stage some kind of coup…

I’ve realized over the last few weeks kind of a funny thing amidst the crazy disconnectedness that defines my average mental state. There are these tiny moments, these silly rituals, that tether me to my kids. Even when they are not with me, I find myself mentally doing things that only make sense WITH my kids. This oddity intrigues me.

When kid #2 started her all too frequent hospital trips back in 2004, she was only 6 years old…aka High Maintenance on Long Car Rides to Out of State Hospital. She NEVER slept in the car. Not ever. We had to come up with some interesting things to get through the last few miles of the trip when we inevitably hit massive traffic. So we started counting bridges. Not big bridges like the Walt Whitman or the Ben Franklin. We count overpasses.

When you get on 676 in Philly, heading from 95 to 76, the road goes down into this weird canal like trench. I have often thought that in an apocalyptic movie this would be flooded in dramatic fashion. (Yes, too many hours have been spent on this stretch of road). Anyway, back in ’04 we started counting bridges. Bridges 1-12 are normal, although bridge 8 has a metal sculpture of Ben Franklin that I originally mistook for Whoopi Goldberg. I know, I teach US History. We were a little shell shocked the first few (like, 27) times we made the drive, what can I say? Bridges 10-12 are closer together. 13 is a larger overpass, and thus must be said “Thirteeeeeeeeeeeeen”. Right after that come a quick 14 & 15 and then we are on 76. Technically there’s an overpass right off the exit, but that one doesn’t count….get on 76 and take a deep breath, here comes a massive “Sixteeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeen” which you can only get through on one breath if we are able to drive at 50 miles per hour.

Nearly 8 years later, we still do this. But the crazy thing is that now, sometimes, kid #2 is asleep when we get to the bridges…and in my head, I still count. In my head, the weird sing-song counting continues. Even without her voice Actually coming from the back seat, I hear her.
This weirdly comforts me, even as I am slightly bugged that I am compelled to count.

On any interstate trip we also have to say the name of the state we are leaving really fast and repeatedly right before the state line…then you finish with the new state. So on our trips to the hospital that plays out as NewJerseyNewJerseyNewJerseyNewJerseyNewJerseyNewJersey PENNSYLVANIA! …and then in reverse on the way back. This is more challenging in New England, the state names are so long and full of consonants (try Connecticut to Massachusetts or reversed. Eek!). But again, even if the kids are sleeping, I find myself doing this ridiculous thing.

Finally, my kid #3 recently brought home a new car ritual, the “FEDEX I SEE THE ARROW!” contest. If you see a Fed Ex truck, you have to be the first person to spot the arrow in the logo (did you know there is one? I never knew until kid #3 showed me)…and then YELL “FEDEXISEETHEARROW!” as fast as you can. For the visually impaired kid in the car, the rules are adjusted, she can yell “FedEx I see the truck!” since I am not sure she has EVER figured out where the arrow is.

Now, even when I drive alone, I mentally keep track of all the FedEx trucks I see. Note to all, somewhere in the middle of Massachusetts there must be a FedEx facility near 495, because we saw about 10 in 4 minutes. To be more accurate, Momma saw about 10 in 4 minutes (oh yeah!).

For some reason, this mental monologue that happens whenever I drive is a comfort to me. Somehow I know, that even in the crazy disconnectedness that is so plaguing me right now, I AM deeply connected to my kids. This silly little thing isn’t the most meaningful moment ever, obviously, but it ‘s kind of like that little smile across the room that brightens your day…a little connection that reminds me that even as I flounder through my days, I am so blessed to have these children who are so deeply engraved on my heart.

Do you have any silly rituals like these? Not like I need to add more (I am so going to add more) , but…we’re not the only ones who do these things, right? Right? Bueller? ; )

Normalcy is not a 4 letter Word

So I find it vaguely ironic that when trying to write about normalcy, my computer crashes and the long post is utterly sucked into a cyber void of some kind. Normal life…ergh. My motivation to try and remember what I said also got sucked into said void…alas.

But here, in what may be a final installment of What Not To Say, is a condensed, rewritten note about “Normalcy is not a 4 Letter Word”. It’s a little rough, but I have to post something. So…here goes. And this one is dedicated to all my friends who can hear my yikes and acknowledge that it rots, and then share their lives with me, too….

*******************************************

So often I have heard, after a friend starts to tell me about a child with the stomach bug or a tough time at work…

“I shouldn’t complain, I know this is nothing compared to what you are going through.”

THIS is a what not to say.

Ok, so in terms of cosmic giganticness, kid with brain tumor might trump kid with ear infection in terms of where each fall on the yikesometer. I know, our reality rots. But that doesn’t mean your tough times don’t count! Please, normalcy is not a 4 letter word.

Seriously, count the letters. There are 8.

But what I mean to say is that everyone has stress. Everyone has tough times, times that challenge us and make us want to hide under the bed. The disclaimer that your yikes isn’t as bad as a parent’s with a catastrophically ill child is kindly meant, but depressing. It’s ok. We KNOW you feel bad. We know that you feel bad about having even a hint of “there but for the grace of God…” thought when you see us. Honestly, at different points in this journey I think most parents have that thought when talking to parents further down the scary road. It’s ok. We understand. Please don’t negate your own challenges just because they seem somehow less yikes than ours…it is so sad and isolating and ugh.

Years ago we had a really difficult season here. I was at the doctor’s office with my baby every single week for about 4 months. I had to juggle various distasteful medicines (well, juggle them into a reluctant 18 month old), learn how to use unfamiliar medical equipment on said kid multiple times a day, manage food shopping and cleaning and laundry (said 18 month old generated a lot of laundry) and generally still do everything even though my baby went from one sickness to the next all winter long. It was brutal. I felt beaten down, discouraged, and exhausted.

And this was the only child in this house who does NOT have a brain tumor. Go figure. And at that point he was still an only child! Still, this yikes flattened me. Every life has stress, and we do what we have to do. Getting to be there for each other is part of what makes OUR horror more bearable.

Let me explain…

Sharing your normalcy with me makes me feel …better? Useful? I’m not even sure the right word. But just as parents in our position hope that at the end of the day we still have friends around who can support us (and alas, so many are gone now, which is more my fault than anyone else’s)…we hope to be able to BE supportive friends. Part of that is being able to support you in your normalcy. Sharing the normal ups and downs of life with us helps, it really does…

I used to have a friend who would occasionally call when my daughter was in the worst parts of her treatment, this friend would call just to share some funny story or weird anecdote…because he understood that while the pain was always with us, a funny story bridged the gap between pain and hope. Normalcy was healing.

At the end of the day, we all HOPE to get back to normalcy. I am starting to accept that we never will get back to normal normalcy (ok, I am not accepting that WELL, but I am starting to choke it down. Hey, it’s only been 7.5 years, give me time!) , but we do hope for that. Hearing about normal life stuff is almost refreshing.

Speaking for me, I feel like a friend trusts me if they can say, “Sally will only eat pasta and I am losing my mind”. Is that a huge deal? YES! It certainly was for me years ago, in our time B.T. (before tumors)…my picky eaters and my strong willed child drove me to distraction. Even today, the travails of my teen often cause me massively more anxiety than dealing with my child’s horrible illness. And maybe I know a way to help Sally eat more than pasta (ok, I don’t, but really, is pasta that bad?). I can be useful as well as ornamental, and that is so refreshing and delicious and almost empowering.

Normalcy can bring us together. Sharing normal moments builds relationships, and helps friendships survive the catastrophe that threatens any friendship in its path.

Now, I know…there are days where certain kinds of normalcy just kill me, and I have heard this echoed among my bt & nf friends. Days where we are at the store, or a child’s activity, and we hear other parents going on and on about the travesty of little Joey not getting the Lead in the school play, he was DEVASTATED,how can he be Newt # 4 instead of The King of Spring, I am calling the administration, how dare people blah blah blah, especially since Joey is lactose intolerant, how could anyone NOT see that he is so fabulous.

Ok, so my normal response to that is visualization of ninja moves, or some kind of 80s movie-style meltdown with Journey playing in the background. But this is DIFFERENT. I promise, it is.

Overhearing people kvetch about trivialities hurts when you are thinking, gee, I hope we don’t flunk chemo the first week of spring and then have to think about risky neurosurgery or a new more horrifying chemotherapy. I once lost it in a restaurant when I heard a nice family cheerfully talking about a planned trip to Disney…we had been pondering contacting Make a Wish for the same thing, and that just crushed me, the context crushed me. But sharing normal conversation with a friend is DIFFERENT.

This happens a lot when I talk to pregnant people. I ALWAYS ask how a pregnant lady is feeling, pregnancy for me was kind of super not fun. Often I find that people somehow KNOW that my pregnancies were train wrecks of hyper-emesis. With Kid #2 I ended up in the hospital when I hit 102 lbs. Yikes. But my babies are OLD. I am over it. Really. I really care a lot about pregnant ladies, I have great empathy for anyone carrying a new life within them…but so often, I hear, “I feel queasy a lot, but I KNOW that is nothing compared to what you went through…”. BUT I AM NOT COMPARING! Really. It’s not a contest, asking how YOUR life is becomes a way to connect, to express solidarity.

True, some days even bland normalcy makes me bite people’s heads off, which is totally unfair. I hate that I am the wicked witch of the east sans stripy socks. I just don’t care about political primaries in other states, or how green beans might save the universe if we only believe hard enough, or that reality TV makes you a sociopath. While it’s normal to have an opinion about those things, I just don’t give a flying wahoozie. I wish I could. Right now, I can’t. I have come to realize that turning Grown Up Age in combination with Kid #2 Relapse has made me a serious menace…sigh. I am sorry.

But again, these are impersonal normalcies. Except the reality TV thing, Project Runway IS my happy place, that is so personal. ; ) Sharing your life means something, it means a lot. So thank you for taking the leap.

In sharing normalcy, there is trust, and back and forth, and an implicit belief that maybe, just maybe the smote will not be in this parallel universe forever. Maybe there will be a day when an ear infection is the worst thing we have to deal with. Gosh, I hope so. And I don’t mean for that hope to disrespect people in the throes of yikes. I hope to support those friends, too.

When we can support each other, life makes more sense. And that is why normalcy is NOT a 4 letter word.