Tuesday, September 30, 2014

I Only Buy Stuff From Nice People

Buying local is important to me. Small farms are important to me. Small business is important to me.

I like to put my money where my mouth is. One way I do this is by shopping at the farmers market most Saturdays, and often one other day during the week. I pay handsomely for this privilege even though I am on a budget. The produce and other foods I buy there are superior to what I get at the supermarket. It's fun to watch the seasons change vis-à-vis the tomatoes, the flowers and the root vegetables.

I've read a lot about how difficult it is to grow and sell local produce. It's still shocking to me that the people who grow good food on small farms have such a tough time making a living.

But every once in a while it isn't the fault of the system, Monsanto, or Big Agriculture. It isn't the fast food industry, our sugar addicted society or The Man. It's the farmer.

I was already feeling a vague sense of discontent shopping at one particular farmers market vendor. I'd spend a big chunk of dough there weekly, but always felt unduly rushed when putting my change away or packing my stuff. This was after I waited on a long line while they chit chatted with the people they liked.

I was purchasing large quantities of tomatoes for a recipe and had trouble handling everything. Asking for help earned me a begrudged look and a crate shoved in my general direction. Thud.

There were other things. The general feeling I had shopping there was that my treatment at this particular vendor ranged from lukewarm cordial, to mild disdain, to openly rude.

If you are rude one time, then you're having a bad day. Twice, same thing. When it becomes a pattern, then it's something else.

As I waited on line, I saw an elderly woman shopping at the farmers market. I've wondered about the advisability of people this old shopping there without help. It's quite a scene. It doesn't seem safe.

Undoubtedly, she was a major pain in the ass to the farmers. She wears a permanently sour expression. Probably, she cut the line. Honestly, if she'd cut in front of me, I'd let it go. She's old. She deserves accommodations.

The farmer yelled at the lady. It was hard to watch. The old lady decided to walk away without buying anything and said so. The farmer didn't let it go at that. The farmer yelled some more. We don't need your money here anyway!

From everything I've read, the farmer does, in fact, need the money.

I felt slightly dirty as I paid for my food. I expected the feeling to pass. I shopped from other vendors who were all very nice. One gentleman saw me struggle to open a bag, and helped without asking.

I approached the Information Booth. A familiar lady was there. I don't know what her job is exactly. She seems to be the boss of the farmers market.

I told her what happened with the farmer and the old lady. It turns out that this was a very bad idea.

The lady could not believe what I was saying. She was incredulous and unbending. Somehow, it became my fault that the farmer yelled at a 90-year-old woman. At this point, I became rude with the lady at the information booth. This is not easy to admit. But it is true.

There are many nice people who work at the Farmer’s 
Market. Rashaun Brown of John D. Madura Farms is 
definitely one of the very nicest.
Everything came into clear focus in that moment. It was stunningly simple. From that conversation on I took on a new mantra. I only buy stuff from nice people.

I have not shopped from those farmers again. I am staging a one-woman boycott. I see their succulent produce and I walk right on by. And I haven't looked back.

Because of my treatment at the Information Booth, I momentarily wondered if I would need to boycott the entire farmers market. I decided that this was not necessary. I boycotted the one farm stand and the information booth.

Boycott is probably the wrong word for the Information Booth. They aren't selling anything. They give away recipes. They cook things with seasonal food from the market to give customers good ideas. I get my good ideas from nice food writers like Mark Bittman. So I don't need to go there again.

Boycotting is something I do rarely. What happens much more often is positive. It's the opposite of boycotting. It's frequenting. I frequent certain places. This frequenting is based on something my children's kindergarten teachers called Lovely Treatment. 

I used to get my family's prescriptions filled at all different pharmacies. I would do it wherever it was convenient. I was aware that there was a rude person working at the Rite Aid in my neighborhood. I tried to avoid going there. Otherwise, not much thought went into it.
Manuel Ramirez is the owner of Dichter Pharmacy.
His pharmaceutical-grade niceness is unmatched and 

he fills all of my family’s prescriptions. Here we are in the
pharmacy area with the medical type stuff I like to buy there.
One day I went to the doctor and he prescribed a topical antibiotic to treat a skin condition I'd developed. He thought it was a good idea to get treatment started immediately. So he went to his vast sample closet, located the same medication and applied it right there in the exam room.

As I made my way home, it became clearer and clearer that I was having an allergic reaction to the medication.   

I walked into Dichter Pharmacy because it was the closest one to the subway. I explained what happened to Manny, the owner. Manny is also a pharmacist. It feels like my skin is on fire, I said.

Then I sat down in a folding chair. Manny called my doctor. He explained what happened.
He was very nice about the whole thing. It seemed to me that he was going above and beyond in helping with my allergic reaction. He facilitated the new prescription. He conveyed instructions from the doctor. He phoned me at home later that evening to ask how I was doing.

Going forward, Manny has filled all of my family's prescriptions.

If you are in a service industry - and almost everyone is one way or another - one encounter can make a huge difference.

I've met lots of nice people in Mom & Pop shops and locally owned, small businesses. But it doesn't always follow that people running independent businesses are automatically nicer than people working for larger corporate chains.

I end up at Starbucks fairly often. Sometimes I don't have enough time to go home between appointments. I'm at one now. It is very uncommon for people serving there to be anything other than very nice, and often extremely nice.

Say you're running an independent coffee shop and your servers have attitudes and treat me all hipster lackluster when I come in. Then a Starbucks opens across the street. People are upset about this. You are upset about this. But if I decide to go to Starbucks because they're nice and you're cooler than thou, then you aren't a victim of the corporate behemoth, you're a victim of yourself.

Here I am at the aptly named Darling Coffee. The
uncommonly nice co-owner 
Nichole Frockeur-Lidakis, and
these two extremely helpful and friendly Baristas were
kind enough to invite me behind the counter to pose with them.
Then again, I'm fortunate. I have the most beautiful, light filled independent coffee establishment in my neighborhood. Its called Darling Coffee. They make the most wonderful food, coffee and tea. And they are extremely nice. They know I have a picky eater at home and stock his favorite bread. They are kind, attentive and patient. It just feels good to go there.

Naturally, I did not stop at simply frequenting places where people are nice and boycotting places where people are not. In addition to writing this blog post, I also made a collage. I then used the collage in a tee shirt design. Then I wore the tee shirt around as I went shopping.

Sometimes I remembered I was wearing the tee shirt. But other times I'd be going about my business and forget I was wearing it. People were smiling more than usual and giving me a thumbs up. I then remembered that I was wearing the I Only Buy Stuff From Nice People shirt. It seemed to have a resonance with other shoppers. I'll say this about the tee shirt. It's very me.

I’m lucky to live in NYC. There is more than one source for corn and tomatoes. There are multiple places for me to get coffee, medications, clothing and essentials. I get to communicate with my pocketbook. Whether I frequent or boycott is up to me. Once I realized that, my consumer experience got a whole lot easier.

Here I am wearing my new tee shirt.

Friday, September 26, 2014

Slow Technology

You've probably already heard of the Slow Food movement. Recently, I read an article* in Taproot Magazine about “Slow Fashion.” This is an interesting construct. Instead of buying clothing that is mass marketed, you artfully mend and sew clothes using old garments. The clothes are very beautiful and comfortable looking.

This post is not about my giving up modern technology for a period of time and using antiquated forms of it. I'm not leaving my smartphone at home. I’m not going off the grid. I won't be taking a typewriter to Starbucks to see what typing on carbon paper is like. I won't be asking around for 8-track tape players. I won't be communicating only using snail mail. I do believe that at some point I will be trying these things and then writing about the experience for my blog. But I'm not going to do it today.

I have an iPhone 4. I have a first-generation iPad. Our family shares an iMac from 2009.

One STEM (science, technology, engineering and math) oriented member of my family is chagrined that I continue to use the iPhone and iPad. As far as he is concerned, I might as well be living on Little House on the Prairie, churning butter, or cobbling.

Since I am comfortable with these devices and am familiar with them, I see no point in randomly replacing them. When they break or become unusable, then I will do so. I've said this many times before. I will cross that bridge when I come to it.

Most of the time, things work just fine. But sometimes, small bad things happen. I've noticed that these small bad things annoy me a lot. Sometimes I even get angry and have a little meltdown.

The other day, I became mindful of the stress this was causing me several times a day.

The stress response comes because sometimes the Internet in my apartment becomes slow and spotty for a period of time. Sometimes, I have to take it off the WiFi and use the 3G. In any case, this phenomenon causes very slow loading of website pages. I'll have to wait around to see what I've Googled.

Other things happen because my equipment is getting old. Things will act buggy. Apps will randomly quit. My curser will get stuck. They'll be a spinning wheel and I have to re-start. Attempting to comment on someone's Facebook post will get trippy.

These things are all annoying, but none of it is that bad. Really, the problem is that I have to wait. I'm like everyone else who uses this technology. I want instant gratification.

All of this type-A impatience with technology is habitual in spite of my being a very patient person when it comes to other things. I rarely lose my temper with my children. If we are in the car and stuck in bad traffic I'm cool as long as there's good music and conversation.

Once I started to notice behaviors ranging from under my breath profanity to blowing my stack, I started wondering if there was a different way to respond.

So I tried something new. I was using my iPad and a website I'd visited was taking its time to load. I closed my eyes and took 10 deep breaths. I inhaled slowly. I exhaled slowly. Then I opened my eyes.

The website made some progress but wasn't fully loaded. So I closed my eyes again and repeated this. By the time I opened them a second time the website was fully loaded. I was in a calm state as I perused a very artistic and inspiring website.

It was so pleasant and relaxing I tried it with restarting, slow Internet, app crashing, YouTube loading and all manner of temporary technology issues that involve having to wait for something.

So this is what I’m doing. I'm going to manage my expectations regarding my technology. Sometimes things will work perfectly. However, I am not intrinsically entitled to things working this way every time. Sometimes things will be slow. Sometimes, I'll have to start again.

Any time I'm waiting around for technology is my deep breathing time. Already it is transforming my relationship with my iPhone, iPad and iMac. Because of my deep breathing, there is something good that comes out of needing to wait.

The longest I've done any deep breathing so far has been about a minute. The minute hasn't even been all at once. I'm basically checking the progress of the electronics about every 10 breaths.

I'd have to be under a rock not to know that deep breathing and mediation are having a major moment right now. However, these short sessions are not what I'm seeing recommended in articles or literature.

I've tried what the conventional wisdom says. You start by sitting for five minutes. You pay attention to your breath and breathe deeply in and out. Anytime your attention wanders from your breath, you bring it back. It doesn't matter how many times this happens. You gradually work up to 30 minutes.

One of my biggest problems with even five minutes of this is that I can feel my own heart beating. This is something I'd rather not be so aware of. I'm aware of it when I do cardio, but it doesn't bother me then. But when I'm sitting still I don't like the sensation.

Many people would say that I should live with this discomfort. Try to just bring my attention back to my breath every times notice my heart beating. The problem is that I'm just too disconcerted by my heart beating in such an obvious way.

The other thing I love about deep breathing while waiting for technology to cooperate is that I am not just sitting and breathing. I am not just sitting and waiting for the spinning wheel to stop. I'm combining these two things. I'm multitasking.

It appears that I'm not committed to an all out meditation practice at this time. But I am committed to taking some of what's been swirling around and applying it to really slow Internet. I'm not flying off the handle every time things get twitchy with my old iPad. There’s a silver lining to imperfect Apple products. In my book, that's really saying something.

*'Mendfulness' by Katrina Rodabaugh 

Tuesday, September 23, 2014


 At first it would take me unawares.

A mom would sidle up to me. It would typically happen at a birthday party for a child that did not have cancer. Or somewhere else where kids and parents would gather.

Most commonly it would be a friend of a friend. The conversation would start normally enough. The mom would say they were sorry about what we were going through. She might ask how Jacob was doing. This would be fine because in spite of everything Jacob was more often than not doing better than expected.

Then the conversation would take a subtle turn.

The questions would start. At first it seemed like regular mommy comparison conversation. Then, slowly it dawned on me. I was being interviewed to see if I did anything wrong to cause the cancer. The other mom wanted to make sure the same thing didn't happen to her child. She was hoping that I made a mistake with Jacob.

The first couple of times I was patient. I felt sorry for this clueless, worried individual. I reassured the other mom. I told her Jacob's type of cancer was extremely rare. Only a few children in the entire world get it, I would say.

The most common question was if Jacob ate hotdogs. When I was in a telephone support group for mothers of kids with cancer, the other moms mentioned that they too been asked the same question.

I stopped wanting to use any energy up with the worried moms whose kids were healthy.

So I started simplifying my response. No he did not eat hotdogs. We fed him organic food. And if I were feeling extra ambitious I would mention that Jacob was exclusively breastfed as a baby. That was in case the mom doing the questioning was also from the Breastfeeding Mafia.

I wrote Hotdogs during Childhood Cancer Awareness Month in 2013 and posted it on Facebook. At that time, several moms of children with cancer shared that they too had been asked about hotdogs after their child was diagnosed.

Friday, September 19, 2014

Welcome To Holland

 I'm sitting in a hospital room at NYU Medical Center with Jacob on my lap. I'm reading him some stories and entertaining him. He's 18 months old.

Jacob is in for chemotherapy. As far as hospital stays go, this one is pretty routine. I know I sound crazy. How can any hospital stay with an 18 month old possibly be routine? Before any of this happened I would have said the same thing.

Life has settled into a pattern - a pattern that is distinctly childhood cancer style, but a pattern nonetheless. It's not like watching ER or Gray's Anatomy where dramatic things are happening all of the time. In our case we have these days that are fairly predictable and even banal in their own way, punctuated by unexpected crises. There are also planned challenges like MRI scans, surgeries and oncology meetings. These are all scary.

Compared to a sudden spike of fever, a zero white blood cell count, or a fall from the crib - yes, this happened in the hospital - this chemotherapy admission feels okay. This is regular chemo, not stem cell transplant chemo.

I do Jacob's naptime routine with him and put him down in his crib. Predictability is very important when raising toddlers. I'm replicating as many of Jacob's household routines as I can in the hospital. I step outside of the door for a few minutes to let him settle himself. Then after he's asleep I come back in and fold myself into the armchair in his room.

I'll never be a regular mom. I say to myself. This thought comes to me unbidden, and clear as day.

It isn't coming from a sad, feeling sorry for myself place.  Things are going well, under the circumstances. Jacob has had only clean scans since the surgery. His prognostic indicators - terminology his neurosurgeon and oncology team like using - are excellent. Jacob is expected to survive.

Jacob is easy-going, sweet and sociable. He keeps me very much in the moment. He enjoys himself in almost any circumstances. He lifts me up.

There's more happy news for our family. I'm in the early stages of pregnancy. There's going to be a brother or sister for Jacob.

I'll never be a regular mom has no pity attached to it. It is simply an observation. Even if all goes well with Jacob and the new baby - and I'm feeling optimistic - I am forever changed by my experience. It isn't good, it isn't bad, it just is. I take it on with the same steadiness that I've accepted many things as of late.

Fast-forward several years. Jacob has since died, a reality I'm not getting over so much as imperfectly learning to live with. Jacob's little sister has been joined by a brother, born after Jacob died. Both children are healthy and both children are in school.

My thought in the hospital room turned out to be strikingly prophetic. I'm not a regular mom. I notice this in various ways. When I see families - intact families - with three children, I get a little wistful. Otherwise, I have the same equanimity about it.

I'm grateful to have regular mom friends. In spite of my sad story, other moms with healthy kids have befriended me. These women - the close friends, the acquaintances, the acquaintances that later turned into close friends - help me feel that I am more than a walking worst-case scenario. I am more than a cancer mom.

In my travels I've picked up a free magazine called Special Parent. One of my children seems so very gifted. His ability to learn and think deeply is already apparent. At the same time, there are qualities to this child that seem different from all other children. Things that other children learn more slowly, he learns quickly. Things that other children learn more quickly, he learns more slowly.

This child is connected and loving, kinetic, sweet and endlessly curious. There is an enigma like quality to him. He is an exciting child. With him, I learn to dig deep. I learn a patience I never knew I had.

The magazine feels safer than the Internet. The magazine is a place I can dip my toe in. The magazine is where I first see this:

Emily Perl Kingsley.
©1987 by Emily Perl Kingsley. All rights reserved 
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... 
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 
But there's been a change in the flight plan. They've landed in Holland and there you must stay. 
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. 
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I ignore everything else in the special needs magazine except for this. But I read Welcome to Holland three or four times. I rip it out of the magazine and display it on the magnetized bulletin board above my desk.

I'll never be a regular mom is what I said. Welcome to Holland is what another mom said. She used a lot of words. I used a few. But really, we are both saying the same thing. Welcome to Holland means someone gets it.

There are times I privately call Welcome to Holland moments. I remember my journey with Jacob. The moms I met in support groups. The oncology nurse I still feel close to.

Jacob has landed me in Holland. Other circumstances will keep me there.

In spite of the analogy, Holland is no vacation. One afternoon, my child is having a hard time on the subway. An older woman lectures me then calls him a retard.

Then there are moments I wouldn't trade for the world. When you're living in Holland a single conversation can turn everything around. Sometimes that conversation happens at the IEP meeting. Other times it's the checkout line of the grocery store.

 I've learned that having a child with cancer is not always enough commonality between myself and someone else. Neither is having a child with special needs. It's like anything else. Sometimes you connect. Sometime you don't.

And so it is with Holland. Not everyone likes Welcome to Holland. My liking it might have something to do with the way it entered my life. I happened on it accidentally. That made it my discovery, on my terms.

Some other moms were handed a copy of Welcome to Holland by someone with good intentions. The person with good intentions and four healthy children has no business handing out articles about Holland to a Cancer Mom. She hasn't been to Holland. Or she hasn't been to our part of Holland.

Everyone's Holland is different.

I'm on my way home from dropping my son off at his new school. It's raining. I maneuver my way along the crowded sidewalk wielding an umbrella. I see a teenager, slightly older than my son, running awkwardly with plastic bags affixed to both feet.  I take in this funny scene with affection.

This kid came up with a novel solution to the problem of pricey, brand new sneakers and rain. I imagine him arriving at school, hurriedly removing the bags, then coolly walking to class. He looks nonchalant, but feels like a celebrity.

This kid does not have cancer. He's the very picture of classic male adolescence. He's not even my kid. Welcome to Holland, I say anyway. 

Sunday, September 14, 2014

Every Day, No Matter What

I read a quote somewhere that the only constant is change. As far as I'm concerned, this is true.

In my particular life, the only constant is change and there is another constant that seems like the opposite of the only constant is change. In this one area of my life the only constant is the constant.
The Farmer's Market
I post photographs on Facebook every day. I have a schedule. I have this one Facebook friend who noticed the schedule and then perceived a change in the schedule. He private messaged me to ask me for the updated schedule. I appreciated this very much. He wanted to know what to expect when. I understand that.

The schedule goes like this. Every Monday, I post The Beautiful Trash Series in the morning. Then in the afternoon, I share pictures I take around the Upper West Side of Manhattan. Tuesdays I do Faded early, and then I ❤ Hell's Kitchen later. Wednesdays it's Hardscrabble Plants and Mid-Century Modern. Thursdays, Flyers on Lamp Posts and other surfaces and Windows. Friday Meditate with Me and Swatch Book. Saturdays I do The Farmers Market and Craft-like. Finally, on Sunday, I do What I see when I go to the Country and This is Inwood.
Flyers on Lamp Posts and Other Surfaces
If you are already my Facebook friend then you probably remember the meanings of these titles. You know that Hardscrabble Plants are weeds. If you are not my Facebook friend, I'm going to ask you to read between the lines and make some inferences. Additionally, I've also sprinkled some photos in this post that will give you some idea.

I apologize if the schedule paragraph went on a little long. I have 14 series that I'm posting now. In addition to those, I have some series I'm working on that haven't started posting yet. I can feel some of the series I'm posting may be coming to a natural end soon. I'll roll out something new then.
Mid-Century Modern
For a year I took a photograph of my dinner every night and posted it to Facebook.

People have asked me what I would do if something extremely unexpected happened in my life. Would I still photograph my dinner every night?

Fortunately, I'd already thought of this and the answer is yes.

I imagined myself hospitalized. I think I was able to create an accurate prediction based on past experience with adversity. I predict that after a period of shock and extreme anxiety around the issues landing me in the hospital, I would adapt. I'd make the best of it. If I were eating a hospital meal delivered on a tray then I would photograph that. If one of my many visitors brought me something from outside  - and I imagine that with a prolonged stay I would request this - then I'd photograph that dinner. Finally, if I were not allowed to take anything by mouth, then under those extreme circumstances I'd feel obligated to photograph whatever was hanging from the IV.

One of the benefits to all of this photographing and series and posting to Facebook is that I notice improvement over time. I'm better at composing photographs and recognizing what will or won't work. I learn more about the capabilities of my iPhone camera and it's limitations. I play to its strengths. This is allegorical to the rest of my life.

Keep doing something again and again and inevitably you get better at it,
Beautiful Trash
I walk out my door and the possibilities are endless. I use my time to accomplish a lot in little snippets. The last few days included commutes to and from school with my son, a trip to the pediatrician with my daughter, various errands and doctor and dentist appointments for me. The photographs posted here were taken in the space between these things.

The photography I post like clockwork is an anchor. It steadies me against the flux. It almost doesn't matter what I take pictures of or what series it is. The everyday-ness and no-matter-what-ness is what's important. That, and all the other reasons I mentioned.

Interested in seeing more of my photography? Friend Karen Capucilli on Facebook!

Thursday, September 11, 2014

Hard Words For The Plastic Surgeon

The good news lies in your steady hands
Where others have butchered, you caress
You've coaxed away every worry they've ever had
Like Picasso, Monet, and the minimalists rolled into one

You're everywhere, you're ubiquitous
You settled early in Westchester
Then caravanned along the East side
From 5th avenue to Park
Afterwards you flourished your way downtown
You're nothing if not prolific

I see your handiwork in the waiting rooms, the crosstown bus.
I see it at the luncheon and the ritual meeting of the Town Car after school
I feel its presence after Labor Day
Everyone taut, everyone so well rested

You're selling the before before the after
Before the affairs, the failures, the tarnish, the nest egg
The days of wine and roses that never really were - not really
You're artisan of a beautiful dream
Your best work done before you've done any work at all

It's not your doing when it falters
All the luxury on God's green earth
Can't approximate the winsome, the dewy, the gamine, the glade
No abundance of steely resolve
Can turn cloying potpourri into fresh iris petals

You can't bring back the night on the town, the shared cigarette, the waking at noon
A quick splash of water from the bathroom sink, then out to do it all over again

There's no replicating the debutant ball, the grand entrance, even the catcall
With that wide gash of a mouth or the over stretched canvas
So tight it hurts us all to look

I hate to be the one to tell you
It gets worse before I'm done
My answer rests with the faint whiff of formaldehyde
The apology implicit in the bandages
The sad eyes lolling in Plasticine
It's the sting of knowing
The best of the best is still not good enough

Saturday, September 6, 2014

The First Day Of School

I was impressed with Noah's new school. I was impressed with the home visit. I was impressed with the free technology workshop Noah participated in over the summer. I was impressed with the freshman overnight trip. I was impressed by the way these things were handled. I was also impressed that they had home visits, free technology workshops over the summer and overnight trips at all.

There were a hundred things to be impressed with at Noah's new school.

I was impressed with the email I had received earlier about what to expect the morning of the first day of school. There were clear directions for the students. There was a pleasant picture of what we would encounter, namely a 7:30 arrival time being greeted by staff members wearing special tee shirts. These staff members would then escort the students into the building.

I arrived at 7:30 with Noah. 7:45 came and went, with no staff members in tee shirts materializing. Noah was pacing about. He was asking what time it was at regular intervals.

I was not impressed.

On the plus side, the yard in front of the school door was filled with what looked like nice students. No one was creating a ruckus. No one was selling drugs.

I think of myself as a reasonably intelligent person. But I’ve noticed that I can be more literal that most people. This can be a good thing because I am always on time and take deadlines seriously. However, when something does not work out as planned, I find this deeply disconcerting.

And so it was with the first day of school. As 7:50 came, I began to miss Noah's previous school. Just as I was comparing the high school unfavorably with the middle school, a man began to approach me with friendly and winning smile. He extended his hand and introduced himself.

This was a good turn of events. Once I start socializing and meeting people I always feel better.

Are you a teacher? He asked. I explained that I am not a teacher. I am the parent of a freshman boy. I pointed to my pacing child.

I get this a lot. In all kinds of situations, people assume that I am a teacher. I must give off some sort of official and competent vibe that people associate with being a teacher.

I've never met a teacher I didn't like. So I take this as a compliment. However, there might be a darker side to being mistaken for a teacher so often. I've wondered if people think that I'm a teacher because I am caucasian. It's possible that people are having positive associations because of my White Privilege.

If I notice something that seems to fall under the umbrella of White Privilege, then it probably does.

The man said that he is the dad of a freshman daughter. He introduced us. When I saw you, I felt like you were an angel from heaven he said.

Although people mistake me for a teacher all the time, the angel from heaven thing is less common. Then again, I do seem to appear at just the right time for people. I can be very helpful.

She's very nervous, the dad said, indicating his daughter. She has no friends yet. She doesn't know anyone here.

He's nervous too, I said. So you can relate to me, yes? He asked. I nodded and smiled. I can totally relate I said.

I do think everyone would be more relaxed if these staff members in special tee shirts would come out, I said. It was almost 8 o'clock. We'd been out here almost half an hour.

The nervous dad told me that he is a Christian. Then he asked me to pray with him. I hesitated. I considered telling him that I wasn't comfortable with it.

Ultimately, I decided to stop over thinking it. Go ahead and just pray with the dude, I said to myself. I was afraid he would feel insulted if I said no. Also, in assessing the situation, which was more concerning by the minute, I felt that perhaps some divine intervention was in order. Doing something—anything—felt better than doing nothing, or worse, standing around complaining.

After a quick prayer, the nervous dad shared that he prayed for everyone at the high school, not just our kids. This was magnanimous of him. On the other hand, I confined myself to our individual kids. I also put in a good word for the staff to come out and escort the kids inside.  One of us took a broad and inclusive approach while the other was very specific.

Soon after, staff members in designated tee shirts appeared. There were less staff members than I anticipated. One of them had a deer in the headlight look, which interfaced badly with my own deer in the headlight look. It would have been better if one of us had not had that look. A deer in the headlights looking at another deer in the headlights is not a good thing.

Thankfully, a man in a suit appeared and seemed to have the entire situation well in hand. He said very reassuring things to the nervous dad and myself.

I joined all of the other parents who were gathered around a large picture window. We all cupped our hands in order to deal with the reflections so that we could watch our children go through the metal detectors. At one point, I lost sight of Noah. Fortunately the nervous dad saw him go all the way through, hesitate, then ask a guard for directions.

I then left and sent Jeremy a grouchy text about the situation.

I thought about emailing the principal about the experience we had in the yard and how the first day of school could be improved upon in the future. I even thought of putting my money where my mouth is and offering to volunteer next September. I would help greet families myself while wearing a special tee shirt.

 In the end, I decided against it. I did not want to appear to be a Looney Tunes. Additionally, no one wants to look like they're one donut short of a dozen. Finally, I did not want to give an exaggerated impression of myself as walking to the beat of my own drum.  My child was clearly going to be walking to the beat of his own drum for the entire four years of high school. I did not want to wear out our welcome there on the first day.

In a few hours time, I had a completely different perspective on the high school. Noah had a good first day. I received reassuring, informative and exciting emails from the school. The drop off the next morning had a different flavor. I was once again reassured and impressed. By the next day, the school had not only met the expectations I had grown accustomed to, but exceeded them.

I later realized that the problem the first morning was really with me and not the school. Sure, things didn’t unfold exactly as I expected. But once I chilled out, I realized that my child doesn’t need a perfect school. I’d taken care that he wouldn’t encounter any big problems at this school. Little problems, like waiting around on the first day build resilience.

He doesn’t need a perfect mother either. Which is a good thing, because he doesn’t have one.

Wednesday, September 3, 2014

Awareness Matters

September is Childhood Cancer Awareness Month. Childhood Cancer shares September with Sickle Cell, and Ovarian Cancer.

October is Breast Cancer Awareness month. It's also a time set aside to be aware of Down's syndrome, Pregnancy and Infant Loss, and bullying.

There's more. There are more causes in September and October. There are ten other months, all of them asking for our awareness. The list of things to be aware of keeps on growing.

I know a lot of people who like me, have been touched by childhood cancer. One of the sentiments that I've been privy to as of late is that many parents whose children died from cancer are sick and tired of awareness. To them, it's a collective spinning of wheels. A drop in the bucket. What is needed is action. Anything less is a waste of time. People are wearing gold ribbons and sharing status updates while children are dying. People are going on with their ordinary lives while children perish.

Awareness has been getting a bad rap.

I get it. But I feel differently. The difference may lie in the way action is defined and recognized.

Everyone notices an ice bucket challenge that goes viral and raises millions of dollars for ALS, one of the scariest and confounding diseases I've ever heard of. The ice bucket challenge is everyone's idea of action. It's quintessential action.

Research money is desperately needed to find cures for many childhood cancers. Unfortunately when it comes to funding, childhood cancer could use more. A lot more. It's easy to see why action needs to look monumental. It's easy to see why anything short of a complete reversal of the status quota can seem insignificant.

When there's a grand gesture, a breakthrough, a massive protest, a medical discovery, an enormous paradigm shift, then that is an action miracle. And don't get me wrong. I'm like everyone else. I want these things. I take measurable action. I raise funds.

But I am here to say that sometimes awareness works it's magic quietly. It can go under the radar. It's like the awareness version of a whisper.

Sometimes action doesn't even look like action.

Awareness inspires the young medical student to specialize in pediatric oncology. She correctly concludes that before a person can possibly be at risk for breast cancer, multiple sclerosis or Alzheimer's disease that person needs to survive a childhood where approximately one in 280 children will develop cancer. She's learned through awareness that children are not little adults when it comes to cancer. They need their own targeted treatments and interventions. She's determined to work on that. She's resisting pressure from family and friends who think this specialty is too sad.

Awareness helps the mom of an elementary school boy who is being ostracized and left out of play and other peer activities. Until October, she wasn't aware that this is a subtle and harmful form of bullying. Bullying Awareness means she has the tools to work with the school to help her son before any more damage is done. Sometimes, bullying doesn't look like bullying.

Awareness is remembering that before the 1980s breast cancer was something that people didn't talk openly about. There was shame and secrecy surrounding this diagnosis. Breast cancer activists helped change all of that. Participating in the Avon Walk might help you or your daughter have better options for treatment - or even prevention - in the future. But not rolling your eyes at yet another pink ribbon on a box of tissues or a store window is also an important action. We lead by example.

Sometimes awareness is acknowledgement.

Autism Awareness is watching a mother struggle with an eight year old having a meltdown on the sidewalk and thinking twice before giving that mom a judgmental look. Awareness knows that an understanding smile can go a long way. A fresh bottle of water. Helping with the bags, which are strewn on the sidewalk.

Maybe a Facebook post, a ribbon or a conversation will raise awareness by dispelling myths and misinformation. Maybe that leads to an earlier diagnosis. Perhaps awareness allows you to make an offer of concrete help to someone struggling through a diagnosis, rather than the usual call if you need anything.

Awareness can be the lightening bolt, the big idea, the Empire State Building, the Presidential Proclamation.

Awareness can be also be deceptively small. It can be grass roots. It's a place where there is room for everyone. It's working for a cure for the future but also taking care of today. It's knowing that what is hard to quantify and impossible to share through social media counts. A new treatment is cause for celebration. So is a high five.

Awareness counts. Awareness is never wasted. Awareness is action.