These Books Carry Me

I have concerns. I’ve exhausted reputable online resources. I’ve exhausted less than reputable online resources.

Talking to people who know more than me helps. But it’s not what you think. Nobody knows everything. People don’t learn things just for the hell of it. You educate yourself on what you need. These people don’t know the answers because they haven’t needed to know the answers.

Talking with other people tells me something. They don’t know what I need to know.

Once again, it’s time for me to be the expert.

When the going gets tough, the tough get reading.

There’s history there.

Long ago, a phone call threatens to floor me. Except that being floored isn’t an option. Time doesn’t stand still because I’d like a mental health day.

There’s a book I know about but hope I will never need to read. I recognize when the jig is up. I need the book now. I needed it yesterday.

It’s a Friday. I make my way to kid number one’s school. The afternoon lays itself out expansively and I get to the neighborhood early.

I know the locations of every New York Public Library in every area I frequent. This East Side branch is a good one. I feel a mixture of hope and trepidation.

The book I need is on the shelf. Someone, somewhere is looking out for me. The universe is kind today. I hold this book in my hands with reverence. I sign it out.

I read the book while waiting for kid number one. I read the book on the bus, the subway, and while waiting for kid number two. The kids go to different schools so waiting time is important.

I read it on the subway ride home. I take breaks to talk with my children and ask about their days. I make myself available for questions and hand holding. But I still get a lot of reading done.

I read myself to sleep. I carve out time from my weekend to read the book. Having read - consumed - this book, it is now part of me. I reread the sections I like the most.

The book propels me and a cascade of activity follows. I hit the ground running on Monday.

I hold onto the book for dear life.

Some books stay for a short time. Some for longer. A few, forever. They all leave their indelible mark. The ship that passed in the night. The dog eared one still on my shelf.

By the time I’ve renewed the book twice, things are in a different place. The book helped bring me there and I brought other people along for the ride. I no longer have to have it on my person.

There have been other books. It’s time for the next one.

Not all concerns are emergencies. I have a little lead time on this. I get to do some clever matchmaking between myself and a book.

My initial Amazon search leads to ample results addressing my concern. I do a bit of sorting and get the number of possibilities down to 25.

I then go through, one by one, reading bits of chapters, looking at indexes, skimming reviews.

I need the book to tell me things I don’t already know. It needs to understand me. It should tell me it’s going to be okay.

Since my concern is already effortful, it needs to be a page turner. Most importantly, the book shouldn’t be a downer. It shouldn’t have a strident voice. It shouldn’t assume I’m an idiot either.

It’s a tall order, but when I see it I know. I’ve found my book.

I download it on the Kindle app. I start reading. It doesn’t disappoint. It’s more than the sum of its parts.

Dr. Spock said that you know more than you think you know.

I say a silent thanks to all of the books that have come before. I thank the books still to be written. The books I will read that I don’t yet know I will need. I will be able to find a book when something new comes up.

I thank the book I’m holding now. The book that is holding me.

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All of the roads, they did lead here

Destination Library 

I Wish This Book Could Have Lasted Forever

What To Say

I like going to parties. I like to meet new people. After a bit of back and forth, the person I have just met asks what I do. I'm not upset about it. I do the same thing.

For 15 years I had something crisp to say. I'm a freelance still life photographer. I work for magazines, design firms and ad agencies.

Then that line of work no longer fit.

For another several years, I worked for another photographer. He shoots these exquisite portraits and I helped with the behind the scenes work.

My what do you do conversations became a bit more complicated. It wasn't as tidy. It became a tangent of this work, taking care of my kids and various volunteering.

Then I stopped working for money. I work very hard. Just not for a paycheck.

All children need their parents. Some kids need extra.

Because of this, I have an impressive laundry list of skills. I enjoy doing these things a lot, and feel a deep sense of competence. At some point, I may promote these skill sets and start a business. That business will have a name and a short description. Then it will be easier to talk about myself at parties.

This is a possible plan for the future. It doesn't do anything for me now.

If someone asked me today, I could say that I am amassing skills that I plan to monetize later. That actually sounds pretty good. I might even say that the next time I meet someone.

I am reading a book. There is nothing to say except that this book is incredible. Right after I started it, the author, Ta-Nehisi Coates won a McArthur Grant. The name of the book is BetweenThe World And Me. I consider it required reading for everyone.

There is a part of the book that had resonance with me in a way I didn't expect. For most of the book I am being schooled about racism and things I don't already know on account of my being white. This one small piece took me in a different direction.

Ta-Nehisi Coates is at a party. People ask him what he does. He said that he's trying to be a writer. Then later in the book he feels entitled to just say that he is a writer. He gets rid of the trying part - somewhat tentatively. That is how I remember it anyway.

Ta-Nehisi Coates and I have lived very different lives. My white privilege follows me everywhere. That is mostly what I think about when I think about this book.

But I also think about that one little part. This author would probably be surprised but he sort of helped me out with the party question.

Not everyone who gets asked the party question feels confident in the answer. It always feels like everyone else has something compact and easy to say. But that isn't so.

I wear a lot of hats. But I also do one hell of a lot of writing and photography. I'm seriously prolific even though I am not holed up somewhere at an artist colony. I'm writing this while multitasking.

I can say that I'm a writer and a photographer. Or at least trying to be. Or the other thing about amassing skills and monetizing them later.

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The Hatchet Job

Letting People Get Used To Me

Welcome To Holland

The Hat I Didn't Donate

I've been working hard lately on my living space. We have been editing and organizing our belongings. The things we are keeping are lovingly displayed, put away mindfully and stored in ways that make sense.

Many items have lost their relevance. If they are in good enough condition, we've donated them to family members, the farmer’s market fabric recycling or the Salvation Army.

We've been able to throw away lots of old financial records and stuff in poor condition that is just taking up what I like to call valuable real estate. We live in NYC. We have big closets, but no attic or basement. We don't even have a junk room.

It's been quite mind-clearing and liberating.

Recently I opened a huge, beat up Rubbermaid box where we've been keeping our off -season items for as long as I can remember. In the spring and then the fall, there is an activity I call switching the closets and drawers. It's exactly what it sounds like. Because I have growing children, it also means editing out outgrown clothes and incorporating the larger things I've saved.

I started sorting things. I came across a winter hat. This is a hat that is no longer worn. My first instinct was to put it in the rapidly growing donate pile. The pile with the bathing suits that no longer fit, the tee shirts that are deemed too babyish and the shorts that one child wore that would certainly be too scratchy for the other.

The idea of donating this hat felt suddenly devastating. So I stopped and listened. Because I have successfully given away so many things without a trace of heartache or hesitation gave me special credibility in my own mind. It looked as though I needed to keep this hat.

This hat did not belong to my son that died. It belonged to the living, breathing, growth spurting boy, bustling about with his size 11 feet, taking up his fair share of space, both mental and physical.

This hat wasn't one from his babyhood, sweetly placed on that tiny head when I brought him home from the hospital in December of 2000.

This hat is more recent that that.

The hat was either a Christmas gift or a birthday gift from my mother. She has a knack for figuring out what this child needs to wear when. The hat was a big hit with him. It's soft and velvety on the outside and fluffy and plush on the inside. It had flaps to keep his ears covered. Ever since he was a newborn, this kid has hated any kind of wind.

He wore this hat for three winters straight, from 6th through 8th grade. This hat kept him warm and comfortable that whole time.

I could list all of the things that my boy and I experienced together while he was wearing the hat. Suffice it to say I will never forget these times. Three winters is a long time in a boy's life. A lot of growing happened and a lot of making me proud.

The hat became a signature piece for my boy. Until it wasn't anymore.

In December of last year, my son surprised me by wanting to browse with me at a craft fair. He suddenly had the bandwidth for this activity. He selected a brand new hat out of the blue. It was an updated classic. When he tried it on, he looked like a combination of a GQ model and a hipster.

He wore this hat every day until he misplaced it, and then located it again in the lost and found box at school. I finally put it away in the off-season drawer. Our renovation affords us the luxury of getting rid of the banged up, cracked Rubbermaid box.

This was the new signature piece. It was the 9th grade hat. Time will tell if it is also a winter of 10th grade hat or not. I suspect it will. He was pretty happy to see it once he laid his hands on it again.

There are times when I feel no need to keep an object. I'll remember the Pokémon pajamas in my heart. I have pictures of him wearing the threadbare Little Miss Spider shirt he was so attached to when he was five.

But this hat is different. My son has moved on to a new hat. It's only right. Growing up is his job. I'm glad to see him do this. Especially after what transpired before, with his brother.

It was his hat for so long that I cannot imagine anyone else wearing it. It's like Patrick Ewing and the number 33 jersey. Number 33 is his number. And this is my son's hat.

There is a small pile of precious clothing at the bottom of the Rubbermaid box. These are the items that I didn't let go of. The baby stuff is somewhere else with the baby stuff. This is different.

The purple sweater my son wore day in day out in nursery school will be kept. There are other signature pieces too. They won't live in the Rubbermaid box anymore. I'm getting something nice for them from The Container Store.

I'm keeping this hat for the rest of my life.

I'll be 75 years old someday, god willing. I'll have my box on an accessible shelf. I'll take it down and run my fingers over the soft clothes. They're all soft because that's all this child will wear.

I'll remember the fit he pitched on a busy sidewalk one day and how he recovered and then devoured some pizza. I'll remember how he survived croup like nothing ever happened. I'll remember the extraordinary two year old who said please put me to bed mommy when it looked like I might be too busy socializing to remember that it was past his bedtime.

The other day my son and I were having a conversation. He was having a craving for his Dad's brownies. Let's ask dad to make some, I said.

What will happen when I grow up and I don't live with you anymore, he asked? Will dad send me some brownies? He seemed to need some reassurance.

Of course he will, I said. Dad could also use your kitchen to do some baking for you when we come to visit.  Would you like us to visit? He nodded yes.

I thought about the idea that my son could grow up to be a baker like his dad. Maybe he'll make his own brownies and invent his own recipe. I decided not to mention that yet. At this juncture I like thinking about the first scenario better.

Here is the hat I will be keeping for the rest of my life.

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Welcome to Holland

The First Day Of School

The School Uniform

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:

WELCOME TO HOLLAND

By 
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. 

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.

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.

The School Uniform

This morning I was doing the laundry. It was a day like so many others. Sort. Load. Dry. Along with everything else I had several of Noah's school uniform pants and cardigans to wash. Except for the fact that this was the last time I'd be washing and drying these particular clothes, there is nothing remarkable to report.

I didn't wake up today thinking I was going to write about this. To be honest, I was going to write about something else.

But washing and drying Noah's school uniforms for the last time got me into a particular mood that seemed to dominate everything else there is to say. So I'm going with this topic today.

Three years ago, Noah and I took a tour of the school that would eventually become his middle school. The assistant principal led the tour. Here at MS324, we dress for success, she said.

Noah and I both loved this school. The science room was full of small animals in tanks and cages. Noah almost refused to leave that room during the tour. It was a warm and welcoming place. There were things that impressed Noah. There were things that as a mother made me feel secure and comfortable.

After Noah was officially matched with this school, they had an orientation for new families. That is where we learned the particulars of dressing for success. If you are a boy at MS324, this means a white button down shirt, navy blue pants, a black belt, and a navy buttoned cardigan. You needed to wear dark socks and shoes, except on gym days, when you were allowed to wear sneakers.

Noah had never worn anything remotely like this in his entire life.

Everyone has personal preferences when it comes to fabrics and clothes. Noah has always had preferences too.  I noticed early on, that he had stronger likes and dislikes than most other people.

There was no uniform policy at his elementary school. Noah dressed for comfort. He liked soft or silky things to wear. Before he could wear anything, I had to wash it first, which made hand me downs from cousins especially appealing. He wore a lot of soft cotton, velour, fluffy sweatpants and silky athletic wear.

So the summer before middle school I set about researching clothes that fit the requirements. I knew that I would not be buying Noah's school uniform pieces from Target. When I checked them out, I noticed that the fabrics there were very scratchy.

Part of my job as a parent is figuring out what to throw money at and what to economize on. My children have attended public school and except for the supply list, this is largely free of charge. However, I would need to find a uniform for Noah that would not drive him crazy. In other words, I might have to purchase some very expensive school clothes for him.

I started my mission in July. I approached it with a firm plan. I'd done my research. I spoke with customer service representatives from several different stores. I asked them about colors, weaves and thread counts.

Plan A, was to order two different styles of white button down shirts from Land's End. Same with the pants and the cardigans. This was not the cheapest option. But it wasn't the most expensive either.

If Noah could accept any of the choices from Land's End, then that would be our answer. I would then order four more of everything. But if Noah reacted very badly to these clothes, I had another idea up my sleeve.

Plan B would be to take Noah to Brooks Brothers. This was clearly the most pricey but most refined option. And if wearing navy pants and a white shirt would set my son up for success at his new school, it stood to reason that sending him there outfitted in clothes fit for a rich CEO might be dressing him for extra success.

When the shipment came from Lands End, I helped him try on variations on all of the elements. Noah had clear preferences. But it appeared that Noah would be able to tolerate these mid-priced fabrics.

But that wasn't the end of it. Just because Noah could tolerate this uniform didn't mean he was used to it. By the time Noah started school, he needed to be absolutely comfortable in the uniform. There would be many new things to get used to at MS324. The uniform needed to be a non- issue.

I washed all of the uniforms I'd ordered. I asked my mom for advice on fabric softening. She's also the one who turned me on to OxyClean. I was wondering what I was ever going to do about my 10-year-old rough and tumble kid wearing a white shirt.

I then set about acclimating Noah to the uniform without upsetting him. The first day, he wore it for 20 minutes. We quickly worked up to an hour. Then, eventually he was comfortable in it for an entire day.

I had Noah play and lead his normal life in the uniform. This included gaming at the computer, eating pizza, lying around reading and running around outside. I didn't worry about how dirty the uniform got. Boys need to get dirty. Also, my mother had given me stellar advice about washing these clothes.

My mother irons everything. But she did have a trick she shared with me. She said that if you take clothes right out of the dryer, and put them right on a hanger, they will look almost as good as if you ironed them.

For three years this is exactly what I did. For someone who has never had any great interest in fabric care, laundry or dressing for success, I have to say I really rose to the occasion. Noah was not only comfortable at school, he looked really put together. Everything was crisp, creased and clean.

He wore the exact same clothes for his entire time at MS324. When he wore through the knees of his pants, I ordered new ones. When he outgrew the clothes I ordered bigger versions of the same thing. There was a silver lining to all of this dressing for success. Noah is a person, who by and large, enjoys a great deal of consistency. He loves knowing what to expect. Having an extremely predictable set of clothes agreed with him very much.

The uniform was not the only thing that agreed with him at MS324. On the first day of school, Noah's 6th grade homeroom and math teacher walked him out at dismissal and said they'd had a beautiful day. I knew then and there that we had found the right school for him.

Noah has spent the last three years with amazing, inspiring teachers. He's soaked in a school culture that is structured but warm and has made many friends. He has maintained a straight A average. He's been kept safe. I've never once worried about dropping him off there. There are too many good things about this place to list here.

Recently, I set my sights on an 8th grade graduation outfit for Noah. I ordered a button down shirt and pants that are just like his school uniform, but in snazzier colors. I got him a silky tie. In deference to the idea that the other boys would be wearing jackets, I got him a cheap, plain one from Target. I figured I wasn't going to spend more than 25 dollars on something he'd only wear once.

It turns out that I was wrong about the jacket.

After some initial, mild complaints about the tie choking him, Noah enjoyed his formal attire more than I anticipated. As he strutted about, I noticed a new confidence and glimpses of the man he will turn into.

The graduation outfit seemed pretty transformative.

When it was time to go to prom, he insisted on the tie, as well as the jacket. For the first time, Noah was more into how he looked than how the fabric felt.

As Noah and I left together to meet his classmates at prom, he gave himself one last admiring glance in the mirror. Then he set out to conquer the world.

Noah will be starting 9th grade in the fall. The high school does not have a uniform policy. Come July, Noah and I will be discussing school clothes. I will ask him how he will want to dress. He can wear the casual clothes he wears on weekends. If he likes, he can dress up more and I'll be happy to order button down shirts, pants, ties, and a couple more jackets. Finally, he'll have the option of dressing for success the same way he has since 6th grade. In that case, I'll order new versions in bigger sizes. He's 13 and growing like a weed.

You Should Read The Rosie Project

I just finished The Rosie Project by Graeme Simsion. This is a great book. Here is why I think you will love it too.

You will become very pleasantly lost in the storytelling. This is a difficult book to put down.  Ayelet Waldman wrote one of the testimonials that appear on the book jacket. She loved it so much that she read it in a single sitting. Someone else called it compulsively readable. If you are a binge reader, then this is the page-turner for you.

My sense of humor gets me through a lot. This book is hilarious.

But The Rosie Project isn't just funny. The characters are realistically and poignantly drawn. They get into situations you wonder how they will get out of. You feel like you're old friends by the time you've finished this book. I wanted to hang out with people from The Rosie Project.  I had to keep reminding myself: This is fiction.

Don Tillman is the main character. He is extremely appealing, bright, creative and resourceful. He also has Asperger’s Syndrome. He's self aware and nuanced. His unique way of experiencing the world creates difficulties sometimes. It also makes him special. And brilliant.

There is a saying I've heard again and again. If you've met one person with Asperger’s Syndrome, you've met one person with Asperger’s syndrome. Don Tillman is not a stereotype. He's his own person. He's an individual who happens to not be typical. I found this very relatable.

If you possess any kind of difference that makes you seem like an outlier, then I think you will love this book. It's inspiring and optimistic and real.

If you have someone important in your life who marches to the beat of their own drum, then you will love and find comfort in it his book. Even as you notice the differences between the quirky person you love and Don Tillman, you'll gain understanding and insight anyway. This is what happened to me.

Let's say you were the head cheerleader in high school and married the star football player. Your friends are neurotypical. Your children are popular. I think you will like this book too. But more importantly, maybe you really need to read it. You especially.

One of my teenagers read it at the same time as me, and loved it as much as I did. The other teen is planning to read it. It's great for teens without screaming YA book.

It's also romantic without being Chick Lit. You'll love it guys. Really.

You will feel sorry when the book ends, but there is good news. Graeme Simsion is already working on a sequel. Once it comes out, I will buy it right away. I will not be reserving this at the library. I will not want to be on a waiting list for the next one.