Unsanitary

Once our son’s pediatric oncology nurse teaches us how to wash our hands, we will never again use the melted and misshapen bar of soap in the clammy puddle of cloudy water. We will cringe at the sight of the limp, damp, terry cloth hand towel provided in other people’s bathrooms. 

Our child died. It wasn’t from opportunistic infections or carelessness. It was from cancer. All of the germ fighting things we did for him so that he could sustain the strong treatments we hoped would save his life remain with me. There were times when he had zero white blood cells. He still died but at least we controlled the things we could. His death is 100 percent, but my regrets around him are zero. 

So when a pandemic hits, it’s like riding a bike.

While other people are still moving in slow motion, I leave my old life behind without looking back. Everyone is immunocompromised when it comes to COVID-19. The implications are massive and unwieldy.

Soon my hands develop eczema from all of the washing. This too, is familiar. I take the recommendations of epidemiologists and  then embellish them all  for good measure. My doorknobs gleam. 

I don’t game the rules, finding a little loophole here or there. 

Before my child developed pediatric cancer, I was just like the rest of you. I call other parents, unscarred by chemotherapy regimens or pint-sized caskets, civilians. 

Civilians live in a place I can observe but not access. You do not have flashbacks of the moment your child died. You do not have what psychologists call intrusive thoughts that come uninvited, superimpose that death onto surviving family members in crystal-clear details that can only be described as hyperrealism.

Make no mistake. I have no desire to edify or initiate you. I don’t want you wearing my shoes or walking in them. I want you cosseted in innocence because the alternative is just too tragic.

But this pandemic is a beast of unnatural proportions. Would it hurt you to be a little more careful, watchful, aware? Of the children you’ve been gifted? Or, while you are at it, yourselves? 

From the archives:

Before, then, wide open

Rending

The sun it did rise again

Hospital Corridor

As we were wheeling Jacob to CAT scan, she looked at Jeremy and me. Do you have other children? she asked. No, I said.

She shook her head back and forth making a tsk tsk sound with her mouth. I don't remember much about her except she was heavyset and hopefully close to retirement. She had large wet eyes lolling with pity. Our plight made her exhausted.

We moved on quickly. We had somewhere to be. Also, the only way through this was through it.

Later, after all of the screaming, crying, testing, surgery, pathology reports, meetings with oncologists and more imaging, we had a lay of the land. Jacob's prognostic indicators were high. His tumor type was exquisitely sensitive to chemotherapy. The neurosurgeon in particular had a lithe way with words.

I carried Jacob's good prognosis through a lot of places. I took it over to that long, ugly hallway where the lady gave her sorry assessment of the three of us. I slapped her again and again with Jacob's good news. I didn't  do this for real, but it's vivid in my mind anyway.

Much later, after all was said and done and Jacob had landed on the wrong side of the prognosis, the not a home run side, the sorry side, I realize that the lady was indeed right. But it was not helpful to write Jacob off so early on. She shouldn't have done that.

But yeah, skipping over the optimism, the treatments and the clean scans, she had it correct in the end. She can still go fuck herself because one thing I learned is that hope based on solid evidence is never wasted.

It's odd to think of her now. I imagine her laying her head down one last time, welcoming death, weary from years spent in that hospital, witness to people like us.

It was her time. She's in a better place now. Stuff that people say when someone dies from natural causes at more or less the acceptable time. Things we never hear about Jacob, at least not out loud or within earshot.


From the archives:
The Best Thing Someone Never Said To Me
So Long
Nothing

Time, As Few Of Us Know It

Kids grow up so fast. In the blink of an eye.

The days are long, the years are short. And so on.

Blah, blah.

Kids grow up so fast except when they don't.

And when they don't, the years are pretty damn long.

Truisms are truisms, but not for everybody.


From the archives:
The Best Thing Somebody Never Said To Me

Off-White

So Long 

All of the roads, they did lead here

The landline rang. I picked it up. I have zero time she said. But I just had to call and congratulate you.

Oh wow, so he told you, I said. Word travels fast.

I'm sitting with him now, she said. Her voice sounded emotional. Like maybe she was trying to contain her tears.

Just tell me one thing, she said. What was it like to open the envelope?

There is no hesitation. I don't even have to think about it.

It felt like this, I said. I knew in that moment that he had every opportunity open to him. There is nothing closed to him going forward.

Oh my god, she said. Oh my god.

That is exactly what you people set out to do there, I told her. You see potential. This is as much your victory as his.

He worked hard but so did all of you, I added.

And you, she said. You worked very hard too.

That's true. I laughed. Then we said a nice goodbye.

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The High Cost Of Being Me

No Trophies

What I know, what I don’t know

A Phone Call Like This

It could be the landline. It could be your iPhone. Sometimes it's an email, either through whatever grading portal the school uses, or directly from the teacher. It's never been a text.

It might be the guidance counselor, the school social worker, hell, even the gym teacher has had communication with you.

You are deft. You are a team player. You're there to work with them and that is what you do.

You share strategies. You follow up. You validate them. You call in outside supports. You keep yourself available because there is nothing more important than your kid.

You're good at this now. You keep your sense of humor. Soon, after the situation is under control, you laugh about it with whoever it is you're working with.

Ocassionally, there's a tiny bit of barely perceptible impatience lapping around the edges of things. You hide it from people. It's an irritant.

You have a rhetorical question. You wonder why it is that nobody else can simply manage your child. You have no problems at all handling  this kid. It's not always easy being the most competent person in his world.

But mostly you're all equanimity and confidence. You got this. It's how you roll.

But there's this one time. The situation goes on longer than it should have. By the time you know  about it, it is entrenched.

It has some new features. The first email has you off kilter. You ask for more details. They flood in. By the second email you're alarmed. You're out of your element.

Without pity or anger you make an observation. It is free of investment. Now you are a social scientist.

No one in your extended family has ever received an email like this. Not your niece's parent, your nephew's parent, or your own mother. You have  family members who are too young for school but you can already tell their parents will never receive a communication like this one. Same with the majority of your friends.

You wonder what it is like to never receive the phone call. It's hard to imagine such an uneventful trajectory through school.

You go overboard with your child out of fear, and then apologize a couple of hours later  when you've gained better perspective. You and your kid weather this.  He doesn't need a perfect parent every moment of every day. You are impressed with his resilience and your own.

But you're not fooling around. The next day you show up at school with your binder of materials and soon you are sitting with the guidance counselor, who at that very moment is the wisest person you have ever met and the kindest.

He's already done all of the things you were going to ask him to do. He tosses off insight so crisp and shiny that you'll remember it for the rest of your life.

Raising this kid is a group effort. You meet with one other member of what you call the advisory board because she knows more than you do.

She tells you that you overreacted. There was no reason to feel this shaken up. Concerned, yes. Fearful no.

There are two ways you hear this. She works every day with moms like you and kids like yours. She knows her stuff. So yeah, it's reassuring.

But you highly doubt that a phone call like this has ever come close to her home. Statistically it's not likely. Things aren't perfect for her. They never are. But a scenario like this? Probably not.

You kick yourself for not asking. Because if this expert thinks there is something wrong with your response, then you are going to need more information from the expert.

If the expert is not accustomed to phone calls from school which cause distress, then the expert is not the expert. You are the expert. Your report from the trenches should Interest the expert very much. She should listen like you are the only two people in the world.

There is a chance that the expert has gone through something similar. It's hard to imagine because this is an expert and also a parent. This is an expert-parent.

But maybe you are wrong and she has walked the walk. In that case, here is what you will tell her.
  
She should pull her chair closer. She has earned her audience of one. You will be all ears and you will hang on her every word.

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What To Say
Talking With Me About Stimulant Medication
Welcome To Holland 

Venn Diagram

There are things I am not good at. There are things I do not enjoy. There are things that are difficult for me to learn.

I won't focus on the things I am not good at. Except for this. It is good to know whom to hire. It is good to know who to collaborate with, consult with, or delegate to.

There are the things I am good at. These things are extremely enjoyable. They are also easy for me. Oftentimes I find myself in a flow state doing these activities. That is how much I like them.

I like them so much that no one pays me to do these things. I do them for free.

I get a lot of compliments on the things I do well. I don't know how you do it! people say.

I know what they mean. I feel the same way about other people's talents. I'm delighted by good dancing. I'm in awe of people who can put together IKEA or don't get lost in new places. I wonder how musicians feel after writing a spectacular song. There's just too much to keep listing this way because it goes on and on like the infinity symbol.

It’s been a while since I’ve worked for a paycheck. But I work hard. I also work smart. I've assessed a lot of skills doing the things I do, reading the things I do and collaborating with other people.

I might want to monetize the skills I've been amassing. Getting paid for the stuff I am good at, the stuff I love to do and the stuff I've been doing for free while in a flow state is something I am interested in.

A couple of weeks ago it hit me. I've been attending a graduate school of sorts. I didn't know I was enrolling in it, but I have been enrolled. I won't have a diploma and graduation ceremony.  It won't have a beginning, middle and end. On the other hand, I have no tuition or student loans.

The people I've worked with and collaborated with have not realized that they've been running an internship. But that is exactly what they have been doing.

The graduate school thought put a fresh spin on things. Here's where my thinking took me. Maybe reading about me will help you too.

Stuff I will not attempt to monetize.

There are certain things that I do very well and enjoy very much. But many people also find it easy or enjoyable to do these things for themselves. It would be difficult to find people who would want to pay someone else to do these enjoyable activities. Even if they did, the market would be flooded with other individuals who are good at the same activities and hoping to make a living at it.

I will just keep on doing activities like this for free.

Stuff I might attempt to monetize with some caveats

There are things that I do very well that not a lot of other people do nearly as well. It is more of a rare talent. I enjoy these types of activities very much.

There are potential problems with getting paid to exercise these particular rare talents.

I can do these activities better than almost anyone. However, most people aren't very discriminating when it comes to these particular things. They might be able to perceive the difference between good and crappy. But having someone else with less rare talent do it cheaply or doing it themselves badly is deemed good enough for most purposes.

Also, there are many, many rarely talented people who are willing to be paid to engage in activities like this.  There are more people willing to be paid than there are people to pay. This is a problem for me when it comes to getting people to pay me to do activities.

That does not mean I rule out monetizing these enjoyable activities. However, I'd need to think of this as not the main gig. It could be a secondary gig.  If it looks like it could take off, then I could always re-evaluate my prospects.

Stuff I will probably attempt to monetize

This is what I am calling the sweet spot.

There are some other rare talents I have. It turns out that the activities surrounding these talents are both enjoyable and important in ways the previously mentioned activities are not. The activities and skills are also more high stakes.

There are not very many people who do these activities well. There are not very many people who really want to do these activities. I sense that people would rather not do these activities but do not feel that they have a choice. Sometimes they engage others to do these activities who are clearly not up to the task.

 With the right approach, I could find people to pay me to do these activities.

I would find the people who can see the value in what I offer. I would find the people who are self aware and interested in delegating these activities. I would find the people who could afford to pay me.

This is important. People who are interested but cannot afford to pay me are not my prospects.  People of means who do not see the value in what I offer are also not my prospects.

Monetizing the Sweet Spot.

#1 Represents activities that I enjoy, learn to do easily, am talented at, and am better at than the majority of people.

#2 Represents those activities that most other people find difficult (from the standpoint of time, skills, or both), confounding, and not enjoyable.

#3 Represents my monetizing sweet spot.

My Potential Customer

#1 People who are interested in what I do well, value what I do well, and are comfortable with collaborating and delegating.

#2 People who can afford to pay me to do these activities for them.

#3 My potential customer

The reasons I left the workforce are the same reasons I am staying out of the workforce for now. But I am thinking about the near and more distant future. I am seeing where I might fit in and what my sweet spot might be.

I love Venn diagrams. I think there could be more of them as I sort out the whole monetizing skills thing. I've been making Venn diagrams for a long time to help me sort stuff out. This is the first time I've shared any of them.

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Percolating

A Stressor Is A Stressor Is A Stressor

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

Crisis Sidestepped And Averted

I'm at the pediatrician's office with my teenager. She's been complaining about something for a few days. She's had no response to the mild OTC interventions we've tried. I'm concerned but not alarmed. 

The doctor seeing her today is not her primary, but a familiar member of the practice. He's kind and smart. 

The bright young pediatrician is full of vigor and calmly focused in spite of this visit being late on a Friday afternoon. He is also perplexed.

His brow is furrowed. My daughter's symptoms and presentation are not fitting neatly into a box. I recognize this phenomenon immediately. 

My teen is having a comfortable exchange. I go back and forth with a series of questions to attempt to break through the flummox. The doctor is giving me non verbal signs of his uncertainty without sharing his process.

Her primary is different. She and I are partnered up and a well oiled machine. She gives a lot of information. She narrates her line of thinking. She goes three steps ahead without my asking. She goes to the worst case scenarios, none of which are ever terrible. 

She treats me as a colleague. 

This doctor answers my direct questions. Her heart sounds fine. Her lungs sound fine. 

The meds we were giving her are apparently a joke. We gave them to her because we knew it would never hurt her I said. We laugh.

He gives us a line of treatment. This treatment would also serve as a diagnosis. When you give this medication, something different and  stronger than the one we were using before, you should see some improvement after three days. The medication working would serve as a reasonable diagnosis even though some of her symptoms point to this and some don't.

If we see no improvement after three days, we should bring her back.

My daughter seems fine. She's gathering her things and getting ready to leave. She's comfortable with what the doctor has said. She can deal with taking a pill twice a day.

An emergency is brewing. This one is mine.

I recognize the signs, less frequent than they used to be, but unmistakable. I'm feeling lightheaded and standing now would be inadvisable. A sense of unreality has crept in and is gaining momentum.  I am out of my depth.

I am clear headed and quick in a crisis, including my own.

I have not studied method acting, but know its basic principle. I tap into the part of me that remembers being competent  and calm. 

In a performance worthy of Meryl Streep, I smile at my daughter and the doctor. I ask her to meet me in the waiting room because I have a private matter to discuss with the doctor. It's about her brother.

She's used to this. Sometimes I actually need to discuss her younger brother, who is healthy but larger than life. But sometimes, it's something else. This is one of her primary doctor's favorite methods. It gives the two of us a chance to talk about the child privately.

The door closes. I lied, I say. I know, he says.

I come clean.

I'm having a panic attack and some PTSD. I say. If I don't have this conversation with you now, I'm going to pass out. I don't want any of this happening in front of my daughter.

He sits down. I have his full attention.

My eldest child  died. I say. He had a rare form of pediatric cancer. It is nothing like what we are experiencing here. The presentation was completely different.

The doctor is surprised and sympathetic. I see his demeanor shift. He's starting to straighten up. He's taking charge.

As a result of this trauma, I say, ambiguity is sometimes an issue with me. That's why we need this additional conversation. 

I have delivered my one minute elevator speech honed by years of taking care of children in the wake of what happened to Jacob.

The doctor nods. 

Do kids have heart attacks? I ask. Is she going to need to see a cardiologist?

He is definite. No. There is no heart attack happening. There is no cardiac concern.

I'm glad you said something he said. It's probably in the chart but I apologize that I didn't look. 

That's no problem I say. I mean it. I spent 40 minutes watching this doctor rush from one exam room to the next. Most of the kids were screaming. 

Thank you for taking the time. I say. I'm honored to do it, he says. He means it.

I feel the blood rushing back to my face. I know I'm pinking up. The conversation turns ordinary.

This child feels everything intensely I say. Sometimes things clear up on their own and we never really know what they are. She reports things other kids wouldn't necessarily notice.

Chances are, when she feels she is being addressed, her symptoms will improve, I say. She'll take some of the meds and frankly it will most likely work. 

The doctor feels this is a reasonable assessment. He reiterates that he feels there is nothing critical or urgent happening with my child. He also mentions that he is on call this weekend if I want her seen again or need to talk on the phone.

I know what is going to happen after I leave. Even though he's had a busy day - exhausting really - he'll phone our primary or the senior member of the practice. He'll run it by them. 

The next time I see him, he will remember me and my story. He'll anticipate that I may have extra questions. Since he seems to be a fast learner, he may even fill in the blanks when I haven't asked.  He'll be extra careful even when he doesn't need to, and I'll appreciate the effort.

I may have  gained a new colleague. It's okay if he's not. Not every doctor needs to be a hero as long as some of them are.

In a In a couple of days  there will continue to be something in the situation that is more grey than black and white. She'll be improved but not all the way. There will be  will be  a lot rolling around in my hopper.

I'll I remember every single mom from my support groups. Most of the moms in this group had kids who died from cancer. But one of them had an issue that initially presented with something like this only more severe, It congenital and uncommon. The kid kid died stunningly fast. 

I'll think about this. As a concern it won't take on its own life. My daughter wwill be hearty, bright eyed and not exhausted. She'll be too energetic and wholly herself to have this problem. Just like today.

Some things need some extra days to truly show themselves. They take on clarity with time and the only thing to do is wait. I'll check back in with her often but not too often.

There might be an additional phone call. There could be a visit with her primary or a specialist. Or this could be the end of the road. The symptom will disappear as mysteriously as it arrives.

None of these scenarios involve a watershed day where life as we know it changes forever. It's possible, but very, very improbable. 

This I know. Nobody else can teach you this stuff. It's experienced, amassed, cataloged, saved then accessed. It's sorted, pruned re-sorted and re-experienced. 

Hindsight and present day are deft in their collaboration. Eighteen years at this job has taught me a lot. Thanks to these doctors-slash-colleagues, I'm hitting my stride. I'm doing this thing and I'm up for the task.

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Talking With Me About Stimulant Medication

I've had experience talking with people about stimulant medication. I've had experience reading what people have written about stimulant medication. I've had experience reading Facebook posts about stimulant medication.

I have five years of experience supporting, managing, teaching and observing someone who takes stimulant medication.

Previous to and overlapping with that, I had several more years of experience supporting, managing, teaching and observing someone engaged in occupational, speech and language therapy and social skills group.

There are people I would like to talk to about stimulant medication. There are people I would not like to talk to about stimulant medication.

Now I have some rules for myself around talking about and reading about stimulant medication. They are the same rules I have for talking about and reading about ADHD.

This is not a 10 Things Not To Say list. Those lists bother me. They assume everyone is the same. This post is about my vantage point. That said, you might relate it to your particular situation or learn a few things. Any comments you make might teach me something too.

If you are a psychiatrist, psychologist, pediatrician, neurologist, neuropsychologist, family practitioner, nurse practitioner, developmental pediatrician or internist with experience working with those who take stimulant medication, then I would like to talk with you about ADHD and stimulant medication.

If you currently take stimulant medication I would like to talk with you. If a close family member takes stimulant medication then I would like to talk with you. I would like to hear what you have to say whether the experience has been good, bad or indifferent.

If your name is Dr. Ned Hallowell and have written a book called Driven to Distraction then I would like to talk with you. I also like to read what you write about ADHD and stimulant medication. You are welcome to contact me for conversation at any time.

If your children are exceptionally well behaved and you are wondering why all these kids are getting drugged up I have a feeling that a conversation about ADHD and stimulant medication would not go very well. It would be like me having an opinion about team sports. I don't play team sports. My kids don't play them. It didn't take. So I don't go around giving opinions on neighborhood baseball teams.

If you don't know anything about ADHD or stimulant medication and would like to ask me about it, I would welcome that.  If you are asking in the spirit of greater understanding then I would be more than willing to participate.

But if you have a lot of preconceived notions that you are very invested in, it might not be a satisfying conversation for either one of us.

If you like comparing carefully prescribed stimulant medication to crack, illegal amphetamines, speed, espresso, cold brewed coffee, tranquilizers or dark chocolate then it is unwise for me to engage with you on that subject.

If you have accidentally or purposely tried a tiny bit of someone else's stimulant medication and you yourself do not have ADD or ADHD, then I would love to have a conversation with you and compare notes.

If you are currently contemplating treatment for yourself because you've been struggling and these struggles are pointing you and your doctor to ADD, then you are welcome to talk with me. There are many people who learn more about themselves as adults. Adults who are self aware, change course and seek help are brave adults. I'll talk carefully with you and mostly listen.

If you are wrapping your mind around helping a child, then I know that in spite of what other people say and write that this is almost always a difficult decision and a multi-tiered one. I will walk on eggshells and you'll do most of the talking.

If you are a physical therapist, occupational therapist, speech and language pathologist or special education teacher with experience in this arena you are people I admire. I always want to hear what you have to say.

If you are a classroom teacher I like talking to you. You see a high volume of kids every day. That alone is worth the price of admission.

If you are Judith Warner and you have written a book called We've Got Issues: Children and Parents in the Age of Medication then I would like to personally thank you for writing it. You would be a person I would enjoy talking to about stimulant medication and ADHD.

If you are writing a book and want to say something about ADHD or stimulant medication, then do deep research and talk to real people walking the walk and the people who work with them. Otherwise, people like me see right through your book or article.

If the words Adderall Nation have crossed your lips or peppered your writing then you will find a lot of like-minded company, just not with me.

If you have no experience with this, whether you are a grandparent, a journalist, a friend, or a public figure, be humble. Own your inexperience. It's important to know when you are out of your depth. Know that you don't know.

If you are wondering if this person or that really needs stimulant medication consider that they may look like they don't need stimulant medication because they are in fact on stimulant medication. When they are not on stimulant medication is when they look like they need stimulant medication.

Think about it. There is beauty in this logic.

If you are thinking that your generation was better because nobody needed stimulant medication when you were coming up or when you were raising kids I find a conversation with you will be like talking to a brick wall.  There are gaping holes in what you are saying but its better to agree to disagree and change the subject.

If you feel the need to point out that there is no ADHD in France, and that French mothers are doing a categorically better job of parenting than American ones, then I don't want to talk with you about stimulant medication or ADHD. I will no longer read what you have to say.

If you are not a parent at all but have opinions about the use of stimulant medication in children then maybe you'd like my opinion on stuff I know nothing about—how about those Yankees?

In addition to all things already mentioned, I am skipping any conversation, article, podcast or reference to the Marshmallow Test. For personal reasons I have adopted a no Marshmallow Test policy.

The elevator speech version of the long-winded stuff I just wrote is this. If you are in the trenches, I'll talk to you. I'll read your book. If you are not in the trenches but know you are not in the trenches them I'll talk to you. All others, no. I'll talk to you about other stuff. Just not stimulant medication and ADHD.

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A Stressor is a Stressor is a Stressor

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Subtract One

It is always better to be slightly underdressed.

Coco Chanel

A lot of what we see, read, hear and consume is about adding. You need to add more servings of fruits and vegetables. You need to add an exercise plan. You need to add some key pieces to your wardrobe or a new positive habit.

And so it is with subtracting. You need to cut calories. You need to de-clutter and get rid of your stuff. You need to embrace a less is more attitude. Edit your Facebook friend list. Purge negativity.

This post isn't about either of those ways of adding or subtracting. This post isn't about Common Core Math either.

This post reminds me of an old allegorical piece of advice by Coco Chanel. I had trouble finding her exact words online - there were many different versions attributed to her. The gist of it is that a well-dressed woman puts on all of the clothes and jewelry she wants to wear. Then right before leaving the house, she looks in the mirror and removes one item.

She does not mean one shoe, a purse or a dress. What she means is an accessory. So if the elegant woman is wearing a necklace, earrings and a bracelet, maybe she removes the bracelet. Or she keeps all the jewelry and removes the silk scarf.

Just because I quoted Coco Chanel once and paraphrased her once does not mean that I admire her. But even if a person is a Nazi sympathizer and a terrible anti Semite, they have small pockets of usefulness and even wisdom.

Coco Chanel is not a person I would want to get to know, but she was a fashion expert. I am not a fashion expert and I am not anti-Semite. I am not nearly as well dressed.

This is not about clothes. It is about time. For today's purposes, it is about what we call leisure time. It could be applied just as easily to any old time. But I'm starting small.

It's the weekend. Or a vacation. It's a free evening or a wide swath of time when you are not at work. Whatever it is, it is a time when you would like to catch up on a few things and also have some fun.

So you make some plans. This is a good idea.  If you don't make plans, time will just be whittled away.

Some people make just the right amount of plans for that specific day. My mother does this really well. I like to think I do too. But it took some trial and error and a learning curve for me.

I got good at it. That's why I'm giving advice. If you're already good at it, you can stop reading now and go do something else.

Here is a weekend scenario.

You plan a Saturday. You'll get up early to play golf with friends you haven't seen in a while. You'll have lunch at the club. Then you'll swing back home to take Billy and Tommy to baseball practice and while they're with the coach you'll stop by the gourmet market for provisions for tonight's barbecue. You'll drive back and watch practice for a few minutes, and take the kids home. Then you plan to jump in the shower, crack open a beer and man the charcoal in time to greet your friends and their kids for some adult fun and conversation while the kids play together.

Maybe you're energized by this day. Maybe you've got this time management thing down.

Or maybe on closer examination, you aren't so happy. You feel frazzled. Your partner is angry because you were 20 minutes late in picking up the kids and in your haste you forgot the beer for the barbecue. Or maybe everything came together fine, but you didn't bet on the traffic and the shower became a casualty. You feel hot and sticky and somewhat grouchy for the rest of the day.

You can't wait to go to work on Monday because the weekend of relaxing activities has left you feeling exhausted.

Here's another scenario. You plan a romantic long weekend trip to NYC. It's a beautiful day and the weather is perfect. You surprise your partner with a day of fun including a view from the top of the Empire State building, a stroll through Central Park and an exploration of Chinatown topped off with dinner. After that a cab ride to the theater district for the hottest show.

The whirlwind may be perfect for just the two of you. Some people are invigorated by this wall-to-wall activity.

But maybe your partner wanted to linger at one of these places. Or it's actually over-stimulating for both of you. You find yourselves bickering at dinner, and secretly wanting to go back to the hotel and bag the Broadway play.

Add a child or two to the above plans and expect some meltdowns.

This is supposed to be fun.

If you're enjoying yourself most weekends, having a sense of accomplishment and rejuvenation, are feeling good and refreshed after an evening out, then keep doing what you're doing.

But if you are miserable, your friends are mad because you're always late, your kids aren’t having as much fun as you imagined, you've over-complicate and over-plan,  you wonder where the time goes, the neighborhood association is complaining because you never cut the lawn, dinner is always sneaking up on you, you have a pounding tension headache on vacation, and the office feels like a spa after your ski excursion, then I have a simple solution.

Make your plans for the day. Then remove one thing from the schedule.

There are fancier ways of managing your time. I'm suggesting something simple.  Tweak later when you're better at this.

Subtract something. Just one thing. It’s the little black dress of time management and it will change your life.

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Doing Nothing

Nothing

I'm standing in Times Square. They're lighting it gold for childhood cancer awareness. I am physically present. I'm there but not there.

I've been on Facebook, but am scrolling by a lot of the posting if it is about childhood cancer. I'm walking down the street when the words “awareness fatigue” pop into my head. The words stay. They fit.

I am not sharing pictures of Jacob on social media.  I only want to do that if it's not about cancer. He was more than just cancer. Even when he had cancer his personhood transcended that.

I'm not into him being a spokesperson. I am not making him a mascot. I'm leaving him be. This feels odd to say because he died. But he has better things to do.

I have better things to do with him.

We run into some nice people at Times Square. Childhood Cancer is like a small town. Everyone knows one another.

Hannah is with us. Noah is not. One of our friends asks after him. Noah doesn’t do awareness, Jeremy says.

A warm feeling envelops me. This is the best thing I’ve heard anyone say all day.

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Blue About Gold

September is Childhood Cancer Awareness Month. Ashley was a healthy child just like yours for six years before her leukemia diagnosis. If you think that Childhood Cancer can’t happen to your child or your family you are sadly mistaken. Childhood Cancer is not rare. Help spread awareness. Go Gold!

These are not the actual words of any one individual. It is a composite of many statements I have seen in my news feeds on Facebook and Twitter, shouted in rallies, and mailed to me in fundraising letters. Names have been changed. Words have been changed.  I re-worked it but I didn't write it. I wouldn't write it.

The rest of this writing is mine. I am addressing this to parents of healthy kids. Your kid doesn't have cancer. None of your kids ever had cancer. You are not a bereaved mom or dad. You are a regular parent doing more or less the best you can.

I'm giving you a heads up in case you see something like this in your newsfeed or inbox or your snail mail. I'm showing you this now because you might hear something similar on TV. Childhood cancer is making the rounds.

The Childhood Cancer community might seem like one big cohesive group. The truth is that childhood cancer advocacy is made up of individuals. As such, I often agree with other voices in this community. But sometimes I disagree.

This is one of those disagreeing times. There are a lot more days in September. If I didn't say something now, I’d be losing my mind until October, when some of the more vocal childhood cancer people start begrudging the breast cancer people their success.

The statement above is hitting below the belt.

Don't go there. Don't take it to heart.

If you want to join my family in Times Square this September, you are invited. They're lighting it gold for September.

If you want to wear a yellow shirt or a gold ribbon, I'd be thrilled. If you take a moment to remember Jacob or kids like him, that means a lot. You can make a donation here and feel good about kids with cancer getting the best possible care.

If you want to organize a fundraiser with your kids' school or at work, let us know. We can help you get started.

If you want to help kids with cancer by all means do so.

It is possible - but not probable - that your child may get cancer. It is true that Jacob was healthy until he wasn't. No one can say which kid will get cancer.

Childhood cancer is not one big disease. It's actually a lot of different cancers under an umbrella. "Find a cure for childhood cancer" sounds oddly inaccurate to me. Finding cures for medulloblastoma, ALL, Wilm's tumor and neuroblastoma is more like it.

The chances of Jacob being diagnosed with his particular cancer type were approximately one  in 4,500. When you factor in his age at diagnosis, the unusual presentation, and other features, he may have been the only child in the world with his exact diagnosis at that exact time.

Numbers are numbers until it hits home. Once Jacob was diagnosed, the situation was 100 percent.

I'm not going to get into numbers for childhood cancer in general. Even one is too many.

But the odds are still overwhelmingly in your favor. The child you wished for, the one who is toddling around, the one starting school, the one starting college is probably not going to be diagnosed with childhood cancer.

Most likely, when all is said and done, if you're reading this now, cancer is going to happen to someone else's kid.

So if you want to help - a donation, a fundraiser - hell, a thumbs up - do it altruistically, or because of some other kid, my kid, me, or an idea. People help other people all the time.

You have my permission to put fear about childhood cancer touching your children out of your mind. It is unfair and unnecessary to ask you to go there.

Here's the thing. I'm different from you. My child had cancer. But I'm also the same.

I have two other kids. These kids are healthy. They are teenagers. They've made it this far. They're both doing great. There are no guarantees. But I am so hopeful.

When I see a post or promotion asking for my help and there is urgency because my child might be next then I know I am being manipulated in the most egregious way. I received a snail mail from St. Jude to this effect. I took the free address labels and ripped up the letter.

I am a childhood cancer activist. But I am fair. I won't use Jacob's memory to scare and coerce people with healthy kids.

My yellow ribbon is borne out of heartache and loss. That said, my September gold comes with a responsibility and positive mission.  We all have choices about what to do with our portion of that gold ribbon. Here's what I'm doing with mine.

You can join Jeremy and I along with Hope & Heroes in Times Square, which is lighting gold in honor of Childhood Cancer Awareness Month on September 17th.

Camp Sunshine invites families touched by Childhood Cancer and bereaved families to camp, for fun, fellowship and support. Donate here.

I’m really inspired by the work  - and fashion - Bravehoods is engaged in.

This image is a thorn in my side and is making the rounds.

Awareness, targeted research, and funding save lives. Sour grapes about breast cancer success doesn’t.

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