You Get What You Get

What Happens After Your Kid Survives Cancer

noreply@blogger.com (WriterGrrl) — Mon, 16 Jan 2017 09:08:00 +0000

When you’re pregnant, there is all this information that bombards you about how to be pregnant — what you should eat, how much weight you should gain, what you should do, what you shouldn’t do, how you should give birth, where you should give birth — there is a LOT of stuff people want you to know.

From my recollection, about 98 percent of my focus when pregnant with my first child was on Creating The Ideal Birth Experience.

This is amusing to anyone who has actually had a child, but it’s a rite of passage for first-time moms. Wow, there are a LOT of expectations.

Anyway, precious little is done to prepare you for the fact that between 12 and 96 hours after you give birth, someone is going to hand you an actual live human baby and expect you to know what to do with it.

When your kid gets cancer, there is a LOT of information that people throw at you. You have to get yourself up to speed on protocols, meds, interactions, steroids, intrathecals, and more. If you have other kids, well, they’re going to learn a new word: independence. At some point on the cancer journey, you realize that you have become completely blasé about general anesthesia. You will find yourself sitting outside the procedure room reading a book, and when they call you into the recovery room, you will barely glance up from your game of Words With Friends. Beeping monitors will no longer alarm you. You will be able to disable them without fully waking yourself up.

And then one day, they will give you your kid back and tell you to go home and go back to your regular life.

And this is where it gets unexpectedly hard.

When your kid survives cancer, there are certain expectations:

You will always be grateful, every moment of every day.
You have some sort of wisdom that others can come and drink from according to their needs.
You will go back to your normal life, because there is no more threat.
You will stop talking about cancer all the time, because IT’S DONE.
You will get your act together and move on with your life.
Everything in your family will go back to normal.

Here is my actual reality:

Even when my kid had cancer, he could still behave like an ass sometimes. My kid is amazing and awesome, and yes, I am grateful to have him — and all of my kids — but sometimes along with the grateful is a healthy side of SHUT THE HELL UP AND STOP FIGHTING WITH EACH OTHER AND JUST EAT THE DAMN FOOD WITHOUT LOOKING FOR HIDDEN CARROT BITS AND SERIOUSLY OH MY GOD SERIOUSLY GO TO BED ALREADY.
I have no wisdom. I have no grace. I have always been graceless, and that hasn’t changed. I have a massive superiority complex, but I am not here to be your wellspring of “God only gives you what you can handle” and “You are stronger than you know.” If I am a wellspring of anything, it is more along the lines of chocolate or coffee.
HAHAHAHAHAHA. I don’t know how normal I was before cancer, but I am SO FAR AWAY from normal now that it is frightening. I am terrified a LOT of the time. It’s super helpful that I have an amazingly supportive husband who says things like, “Abbi, you could get hit by a bus tomorrow.” Yes, thank you, and now I have ONE MORE THING to worry about.
I am seriously incapable of not talking about cancer. I sometimes try realllllllllly hard, and then it just explodes out of me. I can’t just say, “This one time, I met this woman, and this thing happened.” Nope, I HAVE to tell it like this, “This one time, I was on the pediatric oncology ward when my kid had cancer, and I met this woman, and this thing happened.” If you knew the amount of effort I put into NOT talking about cancer, you would be surprised, because it is a LOT of effort, and I get NO results.
HAHAHAHAHAHA. SO NOT TOGETHER. Yep, I vacuum a lot lately. Trust me, OCD never happens for a good reason.
Oh, my family. My daughter who resents me, my other daughter who resents me slightly less, my sons who know that certain topics can only be discussed with Daddy because they upset Mommy too much. Yeah, my family is never going back to normal.

The other thing, the thing no one ever tells you is going to happen, is how horribly guilty you will feel. There are contacts I cannot delete from my phone or my Facebook feed, children who have died and their parents who have lived, and I look at their names almost every day, and I think, “Who decides?” And I think, “How did we get so lucky?” And I think, “How could I bear it if?” and I think, “Stop,” and I think, “It’s okay, he is okay,” and there you go, I’m sobbing on the floor of my kitchen, because it might NOT have been okay, and then what?

There’s that dumb line about how being a parent means walking around with your heart outside your body. Well, watching your kid almost die, staring into that dark, dark place, and then coming back, means that for the rest of your life, your heart has a hole in it, and no matter how hard you try, you can never fix it. You are almost afraid to love wholly, because it hurts so much, all the time.

And I write about it and I talk about it and my daughters roll their eyes and my husband shakes his head, and my friends probably think, “There she goes again,” and so I smile with my mouth closed and swallow the words around the lump in my throat and I try to pretend. And I go to sleep and get up and do it all again.

Gifts and Gift Giving

noreply@blogger.com (WriterGrrl) — Thu, 12 Jan 2017 10:46:00 +0000

On episode 51 of Question of the Day, James and Stephen discussed gifts. Now, I love to talk about gifts, particularly the gifts that I think people should buy for me. But today, let’s talk about one of the major weirdnesses for Americans (and I assume people from other countries as well) who come to live in Israel.

If you ask a typical Israeli to talk about what scares him most, it’s not bombs or other terrorist attacks. It’s being invited to a wedding.

In America, if someone invites you to a wedding, you check your calendar, you see if you are free, you check their registry, maybe you go in on a gift with a few friends, maybe you go to the wedding and maybe you don’t, and generally, life goes on.

In Israel, if you get an invitation to a wedding, all hell breaks loose. First of all, by virtue of the fact that you have been invited, you are now OBLIGATED to show up. And that means you are OBLIGATED to bring a gift. And that gift MUST BE CASH.

In the early years of our marriage, when one of Guy’s many relatives would host a joyous event, our invitation was usually delivered by hand to his parents, who then passed it on to us. Stamps perhaps do not exist in Israel? I don’t know. These days, invitations often arrive by WhatsApp, so it’s a good thing Emily Post is dead. (Emily Post is dead, right?) Anyway, we’d hear about the event, and that was it. We had to go. “But what if we have plans that night?” I would say. “Nope. No plans.” Guy would say. The only acceptable excuse for not attending an event to which you have been invited is attending a funeral. Your own.

I remember attending a wedding when I was about four months pregnant with Lior. I was exhausted and cranky, and because Israelis LOVE to smoke, especially 18 years ago (there is far less smoking inside the reception halls these days, although it still happens), I was furious at the amount of secondhand smoke I was inhaling. I was even more furious when I heard that the bride got divorced less than a year later.

Anyway, whenever we were invited to something by Guy’s extended family, Guy and his siblings and parents would then meet and discuss how much each of them would be giving to the person in question. Today, there are helpful apps and web sites that tell you precisely how much money to give, based on:

Your relationship to the person
If you are coming alone, with your spouse, or with your whole family
The day of the week and the time of the event
The venue
How far you have to drive to get there
Your profession

In Israel, you see, if the people have invited you to an evening event at a high-scale venue, you are expected to give them a gift that reflects at least the cost of your meal. In essence, guests are supposed to pay for the hosts’ choice of venue. A Thursday evening event at a fancy hall requires a larger gift than a Tuesday evening event in the synagogue social hall.

The categories for “profession” in most of these apps are:

student
soldier
employee
self-employed
high tech
retired

If you choose high tech, the app basically adds an extra zero to the amount you need to give.

Should have paid more attention in Hebrew School....

On QoD, James pointed out that he hates giving cash, because when you give someone cash, they wind up giving you the same gift back, which is EXACTLY what happens at these Israeli functions. When there is an event, Guy’s mother says, “You know, at your wedding 20 years ago, she gave you $x, so that’s what you need to give her son for his wedding.”

When we invited people to Adi’s bar mitzvah, I desperately wanted to write on the invitations, PLEASE DO NOT BRING US MONEY OR GIFTS. ADI IS ALIVE AND WE ARE SO HAPPY AND WE INVITED YOU BECAUSE WE LOVE YOU AND WE WANT YOU TO BE WITH US. Guy wouldn’t let me.

When I made the guest list for the bar mitzvah, Guy was like, “Abbi, you talked to those people once.” And I said, “BUT THEY ARE SO NICE TO ADI.” And he said, “You don’t understand. By inviting them, you are OBLIGATING them to give a gift.” So there were people I didn’t invite, even though I wanted to, and that makes me sad.

Listen, I’m not trying to say I don’t like money. I do. You can give me money or gifts basically whenever you want, and I will be okay with that. But I never want people to feel like I invited them for the gifts, or to feel obligated to return gifts. Because if I give you a gift, I give it from my heart, and I truly, honestly expect nothing in return. (If my husband wrote you a check, none of that applies.)

I Know You Are, But What Am I?

noreply@blogger.com (WriterGrrl) — Wed, 11 Jan 2017 12:33:00 +0000

On episode 50 of Question of the Day, Stephen and James debate the definition of maturity. Stephen posits that maturity is being in a situation and handling it with poise. That is a pretty tough standard.

I am frequently stuck waiting in line in grocery stores, and while I generally might appear to be handling the situation with poise, I typically compose passive aggressive tweets.

But, you know, to all outward appearances, I am chill.

I can’t remember, did I ever tell you about the time my kid had cancer? Maybe? Okay, well, when my kid had cancer and I would take him to pick up his chemotherapy, we would encounter a LOT of immature people. Let me paint a picture for you: there were specific medications my son needed to take in order to stay alive that I could only get from very specific branches of very specific pharmacies. My son was not able to care for himself, so I had to take him with me when I went to those pharmacies. This meant that I would put a fresh stoma bag on him, slowly take him to the car, load him into the car, fold up his wheelchair and stick it in the car, get in the car, and drive to the pharmacy.

I would find parking eventually, remove the wheelchair from the car, slowly help Adi out of the car, get Adi into the wheelchair, go to the wheelchair entrance, take an elevator to the pharmacy floor, go all the way down the hallway to the pharmacy, and encounter the line of approximately 972 people, many of whom were coughing and hacking. I would park Adi as far away from the hackers as I could, check to make sure there were no stoma bag emergencies, and then approach a pharmacist.

“My son is neutropenic and I need to pick up his chemotherapy. Can you help me?” I would say politely, and the pharmacist would usually say, “Yes, of course,” or sometimes look where I gestured, see Adi and his bald head and his slumped frame, and wave me in.

And then all hell would break loose.

“THERE IS A LINE, LADY” someone would yell, and I would ignore that person while taking my many prescriptions out. “HEY, LADY! THERE’S A LINE! YOU CAN’T DO THAT!” someone else would shriek, and I would smile at the pharmacist and hand her my health fund card. She would start pulling our medications, and I would take a moment to go over to Adi and make sure he was okay.

“My son has cancer,” I would sometimes say quietly to the person shrieking at me. “He can’t be here around all these people.”

“THERE IS A LIIIIIIIIIIIIIIIIIIIINE!” the injured party would repeat, and I would imagine myself stabbing him in the eyes.

Yes. Maturity.

Recently, I took Adi to a dermatologist to see about a rash on his foot. When we arrived at the office and saw the loooooong line, I knew there was no way Adi could sit and wait patiently until it was our turn. I went to the secretary and showed her Adi’s disability card, which clearly says that he does not have to wait in line. “No problem,” said the secretary. “I’ll let the doctor know, and you’ll be next.” I thanked her, and Adi I went to sit in the crowded waiting room.

A few minutes later, our number was called, and we stood up. All of the other 67 people in the waiting room immediately leapt up, loudly protesting the grave injustice being done to them. One or two of them followed us into the doctor’s office to loudly protest that this was NOT OKAY, and the doctor told them, “Tough. This is a child with special needs.” The protesters looked at Adi and said, “HE IS NOT A CHILD WITH SPECIAL NEEDS,” and I just want to say, to my credit, that I was EXTREMELY MATURE as I slammed the door shut and did not actually begin screaming.

So, I guess that my definition of maturity is someone who is not an ass.

Epistle: To Yoni, on the Occasion of Your Eleventh Birthday

noreply@blogger.com (WriterGrrl) — Mon, 09 Jan 2017 16:01:00 +0000

Dear Yoni,

It’s been a while since I’ve written you a birthday letter, because I suck. Sorry.

You make your own magic.

Before I had a lot of kids, I kind of thought that in families with a lot of kids, kids basically got ignored. I figured that parents just stopped making an effort or something, after a while. I don’t know. Then I had a bunch of kids, and I realized that love is not a pie that you cut pieces from. Rather, love is like.. well, not like a pie. More like Twitter. It expands to fill the space you allow it. The more you give, the more you have.

You were born into a house of chaos, and you were forced to live much of your babyhood in the very large shadow of your older brother. You were born to parents who had their world upended, to a mother who frankly did not cope for many, many months. And yet, you managed to thrive.

Perhaps we need to work on your selfie skills.

You have always been wiser than your years, and often wiser than your peers. You are a leader. You speak up. You find your way and make do with what you have. You are in the sometimes awkward position of having an older brother with special needs, but you have almost always deferred to him with grace. You know when he needs help, and how to give that help without embarrassing him. You know that he doesn’t always understand, so you have to be more understanding. You are a marvel.

I find you in trees more often than I would like.

You also have a younger brother. Frequently, you two are so close that I cannot tell where one of you ends and the other begins. Frequently, you cannot stand each other. But we have more of the former than the latter, and for that, I am grateful.

I could eat you.

Recently, your teacher asked your father if we were sure that you had friends, because you often spend recess playing alone on your DS. We assured your teacher that there are many boys your age to whom we are not related by blood or marriage who are in our home at all hours, and just as often, you are off around the neighborhood with them or at their homes.

You are an excellent student. You somehow manage to complete all your homework at school. You read constantly, although you also spend a LOT of time playing weird games on your sim-less iPhone. You spend a WHOLE LOT of time campaigning for a phone with a sim. Sorry, cookie. Two more years.

I still don’t understand that I child I birthed could hate chocolate the way you do. It makes no sense to me, but it is one of the things that makes you Yoni.

Vanilla. This makes no sense to me.

I love you so much, and I am constantly in awe of all the wonderful things you do and say.

I LOVE YOU SO MUCH.

You are awesome, Yoni.

Love,
Mommy

Anger, Marriage, Children, and School

noreply@blogger.com (WriterGrrl) — Sun, 08 Jan 2017 17:12:00 +0000

If I had to sum up the actually useful information that I learned in school, the list would look like this:

1. Excellent handwriting and exceptional grammar, thanks to my sixth-grade teacher
2. Anger is a secondary emotion, thanks to my high school theatre director

Everything else, as they say, is commentary.

In my 41 years on this earth, no one — outside of a high school math teacher — has ever asked me anything that required, say trigonometry. I have never needed to know the chemical formula for anything. I don’t care when the Aztecs died or when they say the earth will end. Carrying around an egg for a week in no way prepared me for parenting my children.

The first time my high school director told us that anger is a secondary emotion, I don’t think any of us knew what she was talking about. She quickly realized this, and explained. Anger is prompted by something else — and very often the something else is fear. She demonstrated this by standing on the stage and letting us hear her inner monologue. OH MY GOD. THIS SHOW GOES UP IN TWO WEEKS AND WE ARE NEVER GOING TO BE READY IN TIME.

And then, she showed us the part that we were used to seeing. “RUN THAT SCENE AGAIN AND THIS TIME LIKE YOU ACTUALLY KNOW WHAT IT’S ABOUT AND NO ONE IS GOING HOME UNTIL YOU GET IT RIGHT.”

That clicked for most of us.

I've written about anger, and it's pretty easy to see where the fear lurks.

On Episode 49 of Question of the Day, James Altucher called anger “a costume for fear,” which is an awesome description. He also describes it slightly differently, but also awesomely, on his blog.

The episode is titled “Marriage Troubles with Children,” and James and Stephen discussed how kids affect a marriage, and how married people fight. I think I have a fair number of kids. Five. That often feels like a lot, and at one point I absolutely wanted to tell one of my children flat out, “If your father and I split up, it will ABSOLUTELY be your fault,” but I did not ever actually say that to the child in question. (I thought it A LOT.)

If I had to categorize the fights I have with my husband, I would do it thusly:

1. Money — as in, I earn sporadically, and not as much as I would if I actually had a job, but if I had an actual job in an office, we would pay A LOT of money for other things.
2. Family — as in, I am EXTREMELY difficult to get along with, and I tend to never cut anyone, particularly my in-laws, any slack, ever, for anything. That’s probably on me.
3. Our kids — as in, my husband would like them all to study math and computers, and I think math is useless and computers are really only useful for the Internet.

Stephen Dubner related how his wife had just thanked him for their stress-free, fight-free weekend with the kids, and he talked about how his first instinct was to say, “WHAT THE HECK? Are you trying to say that I’m usually the CAUSE of the fighting and the stress?” which would totally have been my reaction, too. But because Stephen is wiser or more mature than I am, he quickly realized that he had nothing to gain by interpreting the statement that way, and so he chose not to. He also noted that “being right doesn’t mean you win the argument,” which James and I disagreed with pretty strongly.

Being right is THE BEST and THE MOST IMPORTANT. Most of the time. Or sometimes. Or maybe not at all, but it FEELS like it is the most important SO MUCH OF THE TIME.

Right up until the moment you’re sitting there all alone, being right.

Yeah.

P.S. My husband is awesome and we have not had any big fights in months and even that one was pretty tame, even though two of my kids were pretty sure the marriage was over, over a package of bourrekas. My daughter also claims that she once thought we were going to split up because of an argument we had in the car about some buildings. Neither of us has any recollection of this.

Family Vacations

noreply@blogger.com (WriterGrrl) — Thu, 05 Jan 2017 10:06:00 +0000

I have to say that I thoroughly enjoyed listening to Episode 48 of Question of the Day, QOD’s Family Vacation.

Some years ago, when I first read Laura Vanderkam’s 168 Hours (EXCELLENT book, and one I still highly recommend, along with everything else she writes), I remember reading her confession about not enjoying some of things that moms/parents are “supposed” to enjoy, and I remember feeling so FREED.

There are things I am delighted to do with my kids. Read a story? Awesome. Have a meal or a snack together? Dude, I love food. Curl up with me on the couch and talk about your day? Yes. Monopoly? NO. NO NO NO NO. I will play Spot It for a decent amount of time. I will play other card games. I will even play the occasional game of Candyland. Jigsaw puzzle? SO IN. (We need more jigsaw puzzles in this family, frankly.) But, like, come and watch your sporting event or your swimming lesson or your play that you wrote in your room 10 minutes ago but that takes 4 hours to perform? NO.

Laura gave me permission to admit that I don’t like doing these things, and to focus my time with my kids on things I do enjoy doing with them, and that spread to other areas of my life.

The vacation episode made me realize that everyone has different ideas of what a successful vacation looks like, and my version doesn’t have to match up with anyone else’s — as long as it somehow works for my family.

James Altucher, a man after my own heart, said that when he’s on vacation, he doesn’t want to have to do anything.

For years, I have told my husband that to me, one of the greatest luxuries I can imagine is ordering room service breakfast in a hotel, and spending the day in bed with a stack of books and a giant tray of sushi. Seriously — the hotel can be in Holon. I don’t care. It has to be clean, and the breakfast should be good, but that’s really all I care about.

James takes this a little bit farther and plans family vacations where he rents a house with a pool located near a mall and a movie theatre. Then he orders food, pool tables, video games, and other small luxuries that his kids will enjoy. He spends his days reading books and doing nothing. His wife and kids can swim, play pool, play video games, and so on. They have daily outings to movies, and one day to hang out at the mall all day.

This sounds totally perfect. No getting up early to hike, no sightseeing, no crap. I love it.

Other people would HATE this vacation, and that’s cool, too. They can go camping on the beach (gross) or backpacking through Europe (grosser) or climb mountains (grossest). Those things do not say “vacation” to me. I might enjoy sightseeing on a trip, but I wouldn’t think of it as a vacation.

I once went to Italy for five days with a group of cancer moms, and that was awesome, but it was a totally different kind of trip. I would never have planned that kind of trip for myself, but I was very happy to let someone else plan every detail and just tell me where to go when. Also, I had no whining kids with me, which made a huge difference.

We took our kids on the most amazing vacation ever this summer, and it was awesome. Disney World and Universal with no lines, and tons of special experiences. But when we then tried to take them to see some monuments and museums, they were totally bored and everyone was unhappy. They would have been happier if we had skipped the touristy stuff and just taken them to swim or eat ice cream — or, frankly, if we had just left them alone with their various screens to chill out. That’s what they want in a vacation. I get it, I really do.

In Israel, “all-inclusive” vacations are very popular. That makes sense to me. One of our best family vacations (minus one kid who was in America at the time) was at an all-inclusive resort in Tiveria. The kids were so excited to sit by the pool, icee in one hand, popsicle in the other. The vacation was all about saying Yes. Yes, you can eat that. Yes, you can swim. Yes, you can lie on your chair and do nothing. Yes, you can eat again. Yes, you can have ice cream and a popsicle. Yes, you can have another soda. It was five days of YES, which is, to me, what vacation should be.

It’s really only very recently that I figured out that when my kids don’t want to go do something, there is no point in forcing them to do it. Letting them stay home means that the people who do go, have a much better time.

Stephen Dubner mentioned that his family has discovered the joy that can come from splitting up the family for vacations — he and his son might go somewhere while his wife and daughter go somewhere else (or he and his daughter and his wife and son). They can focus on doing something that those two people enjoy, without worrying about the other two. This is something that I never really thought of exploring as a full-fledged vacation, although we frequently find that when we take just the two youngest boys places, we have a LOT of fun. (Maybe because the two youngest boys are just plain awesome?)

I guess we just need to go on a bunch of vacations to test out all these theories.

Reading is Definitely Fundamental

noreply@blogger.com (WriterGrrl) — Tue, 03 Jan 2017 15:17:00 +0000

I wanted to write about an episode of QoD where James and Stephen talked about the way we use conversation and say things like, “Hi, how are you” when we don’t really care about the answer, but I can’t remember which episode it is and there are NO TRANSCRIPTS, and so I’m going to have to re-listen to stuff which means I have to walk and it’s cold outside now, so, no.

So instead, I’ll write about Episode 22 of Question of the Day, called Is Reading Fundamental.

When I saw the title of the episode, I had formed a very different idea of what it was going to be about. But because neither James nor Stephen is Adi’s mom, and they do not have the unique experience of being his mom that I have, they took the episode in their direction — discussing why people read (for pleasure, for distraction, to learn, and so on), which was an interesting discussion in its own right. But here’s what I think, which is obviously why you’re here.

I have a son who can’t read.

That’s not fair — Adi can read. He can identify English letters and guess at a few words in English. He can read Hebrew letters. He can sound out words. But mostly he relies on memorization and guessing. If we sit with him, carefully pointing at each letter, at each word, he can make it through a line. Another one. Maybe a third, but at that point, he has no idea what happened back at the beginning of the first line.

This hurts me so much, every day. It hurts me for many reasons. It hurts me because I love reading, and it gives me such joy. I love stories. Adi also loves stories, and I think he would get joy from reading stories if he could. It also hurts me because Adi already faces many limits, and this is just one more. In the coming years, I will have to break my son’s heart again and again, as I tell him about the things he cannot do. Reading fluency would open some of those doors.

Adi has some exceptional skills, and one of them is passing for typical. Adi doesn’t look like a child with a genetic syndrome. He’s ridiculously handsome (objectively speaking), and he doesn’t have the belly that often goes along with low muscle tone.

Heck, most of his low muscle tone is either gone or hidden by his insane coping mechanisms. Anyway, among the things Adi will do to “pass” is to take a magazine or a “grown up book” and hold it, as if he’s reading. When we are in a restaurant, he takes a menu and scans it. He can carry on conversations (this is miraculous to me, and I truly marvel at it daily).

When we worked with him to prepare for his bar mitzvah, he memorized everything, and then he would pretend to read it from the page. We knew he was pretending because he would direct his eyes slightly to the left of the page. It was crazy-making.

At one point,I had many dreams for myself and things I once wanted to do, but lately they seem irrelevant when I think about all the ways I want to change the world to make it more accessible for Adi. I want to write a siddur (prayer book) for Adi. Something that has large print, and maybe easier Hebrew. The basics. I want to build a center, similar to this one, preferably a 5-minute walk from my home, preferably for religious young men with special needs could live, and where typical religious young men could live for free or reduced rent in exchange for X hours/week of volunteering. I want to create a work/life program so that Adi and his friends can, you know, work and live meaningfully.

There is a concept, cognitive accessibility. To make information accessible to people with cognitive disabilities. In practice, you don’t see this much, but Adi finds it in all kinds of places. He relies on icons and non-written cues. It’s astounding, and more and more, I think that this is where I should focus, this is work that I can do that matters.

So. Yes. Reading is fundamental. And I really wish QoD had transcripts.

Why College Is Almost Irrelevant

noreply@blogger.com (WriterGrrl) — Mon, 02 Jan 2017 14:12:00 +0000

A Question of the Day episode I recently listened to featured a questioner who felt that he had wasted his life (in his early 20s) because he hadn’t gone to college. He wanted to feel less like a loser.

If you know me, you know that my primary claim to fame is that I dropped out of college TWICE. And NEVER GRADUATED.

When my kids tell this to people, it’s, “Mommy never went to college.”

Guy gets annoyed when they say this (and I can only imagine how my parents cry themselves to sleep every night), and says, “Mommy went to a LOT of college.” It’s true, I did go to a lot of college.

The short-ish version is this: I finished high school at the end of 11th grade and went to college at Brandeis University to major in Theatre Arts. My parents paid a LOT of money for me to go there, and by midway through my sophomore year, I had credits that counted me as a first semester junior, a 3.8 GPA, and a plan to study abroad in France for my junior year. The extra credits I had racked up would make it easy for me to either take a lighter load in France, graduate a semester early, or take a REALLY light load my senior year.

And then I decided to move to Israel and join the Israeli army.

So I dropped out of college.

After I completed my army service in Israel and got married, I went back to school. In Israel. In a Direct MA program in English at Bar Ilan University.

In Israel, college is 3 years. The Direct MA program was a 4-year program that granted a BA and an MA to students and saved a handful of courses and year or so of tuition. My two-plus years of credit from Brandeis translated into admission into year two and a half of this program.

I was in my final year of the program when I learned that I needed to take these dumb requirement courses that I did not want to take because they were in Hebrew and boring and dumb.

I was working full time at the time, and I HATED most of my classes. The undergrad courses I had to take were fairly ridiculous, in that my classmates would hand in handwritten term papers, and mine would be typed and footnoted, and we would all get within five points of each other. In the graduate courses, I had several teachers who realllllllllllly liked to hear themselves talk and wanted seminar papers full of their own ideas.

On the days I had school, I would cry as I approached campus. None of what I was learning was actually relevant for the job I was already getting paid to do. And so leaving was a pretty easy decision.

I guess that wasn’t really a short version, but there you go. Maybe if I had graduated, I would have learned how to tell a shorter story.

Anyway, have you looked at what college costs in the United States lately? HOLY CRAP. And for WHAT? For so many people, classroom learning doesn’t match up with what’s required in the real world.

Here’s the thing: I believe firmly in education and knowledge. These are good things. I read all the time, but I don’t rely solely on books when I want to learn new things. In the last few months, I’ve spent time learning how to draw, learning to play guitar, and learning knife skills (like, for cooking, not for murdering people). I watch videos, listen to podcasts, and yes, read books about topics that interest me. I love acquiring new skills. But I don’t believe that a college education is right for most — or even many — people today.

At least twice a week, I dream that I’m back in high school, and I’ve somehow managed to completely bail on some class or other all year long. Two nights ago, I dreamed that I was frantically trying to memorize the answers to an English test on a novel I had never touched. I’m pretty sure that these dreams are driven by guilt at the money my parents paid for me to not graduate from college. (My other stress dream? We’ve gone somewhere on vacation, and it’s time to go back home, and I haven’t packed ANYTHING, and there is SO MUCH STUFF — like, actual dressers that I brought on the trip — and not enough suitcases. I don’t know. You figure it out. I don’t have a degree in anything.)

James Altucher said in this episode that he doesn't want to pay for his kids to go to college, because he doesn’t believe that college is worthwhile. Stephen Dubner understands the argument but isn’t ready to go there yet.

We’ve told our kids that we will pay for their higher education in Israel, where it is far less expensive than America. This is absolutely for selfish reasons: 1. They will be here, in Israel, where we can see them. 2. It will cost less. But I don’t think they’ll sacrifice anything by studying here. Okay, they’ll sacrifice the potential for attending drunken frat parties. Very few of those here. The whole college culture is different, because the vast majority of students don’t live in dorms. I’m okay with depriving my kids of that experience.

And I’m not saying they can’t HAVE that experience — I’m just saying I won’t pay for it. And if my kids don’t want to go to college or go and then drop out? I’m cool with that. As I tell my kids daily, “Marry rich.”

Imposing (Narrative) Structure on Chaos

noreply@blogger.com (WriterGrrl) — Thu, 22 Dec 2016 15:21:00 +0000

I planned to write more about habits today, but then it got really nice in the middle of the day, and I went for a walk, and I found myself listening to Part I of the 3-part Freakonomics series on Bad Medicine like WHOA.

Medicine, and bad medicine (shake it up) are topics about which I have a LOT to say. So, habits and Question of the Day will have to wait until next week.

The focus of this episode was on the switch that’s really only happened in the last 25 years, from “eminence-based” medicine to evidence-based medicine. Stephen Dubner commented early in the episode that most of us want to think that our doctors are “If not infallible, then at least reliable” — but is that really true, he asked?

Boy, howdy do I have thoughts. Lots of them! So, let’s impose a little narrative structure on this post by way of a list. I give you…

Five Things I Have Learned About Doctors and Medicine By Living My Life

1. Doctors are people.

My dad is a doctor, and to this day I call him with basically all my medical questions, from “Why is my finger doing this weird clicky thing?” to “Please call me in a prescription for antibiotics I may or may not need” to “They think my son has cancer.” Other people were probably intimidated by my dad (every Israeli who has ever met him has told me, “You know, he could TOTALLY be the President of the United States”), but for me, he’s my dad. He’s really smart, but he’s my dad, and I kind of extended that to all doctors, everywhere. They’re people. They’re not deities, though they often behave as though they are.

2. Doctors are sometimes unwarrantedly arrogant.

I’m not sure that unwarrantedly is actually a word, but it explains exactly what I’m trying to say. Yep, you went to medical school and you know a lot of stuff. Cool. You don’t have to be a jerk and tell me things like, “Your baby may not ever learn to sit up” when he is not even one week old. (Spoiler: my kid sits, walks, runs, talks, and KICKS ASS). I am really, really lucky that my husband and I are educated consumers, because instead of hearing this doctor’s pronouncement as a fact, I took it as a challenge and took my baby home and got him (and me) lots of therapy. I am horrified when I think of what could have happened if we had taken the gloom and doom path this doctor wanted us to take. If we hadn’t pushed Adi. If we hadn’t believed that he would sit up.

3. A doctor who doesn’t want you to ask questions or get a second opinion is not a good doctor.

A doctor should definitely encourage you to ask questions and to fully understand the information you are getting. If you are being treated by a doctor who gets impatient when you ask him or her to explain medical terminology or concepts is a jerk, and you should find a new doctor.

A good doctor will never be afraid of a second opinion.

I have met a LOT of doctors. I have spoken to extremely experienced professionals who were way high up on the totem pole and who still took the time needed to explain things so that I could understand them. I have also talked to doctors who couldn’t understand that the most important person in the room was THE PATIENT, my son, and that they would treat him with respect or they would GET OUT.

When Adi was diagnosed with leukemia, we asked about getting second opinions, about going to Rav Firer, whatever, they told us we could absolutely do that. They also explained to us that the treatment protocol for Adi’s type of leukemia exactly the same at every hospital in Israel and across Europe, and that it was extremely similar to the treatment protocol in the United States. They were happy to sit with us and review the written treatment protocol. They never made us feel like we had to do the treatment in their hospital, although they were extremely clear that we needed to start treatment immediately. Every question we asked was answered patiently and fully. And that was true throughout Adi’s treatment. All two and a half years of it.

4. Doctors don’t know everything.

See above, and also, during our cancer journey, Guy said that the thing he was most surprised to learn was how very little doctors know about some things. Like, for example, what the side effects of steroids will be. “Well, he might be totally manic, or he might be depressed. He could have a voracious appetite, or he might not want to eat at all. And next time, it might be totally different.” Awesome. How about, “Should we give our son cranial radiation?” Well, some studies say, yes, definitely! But other studies say, ABSOLUTELY NOT UNDER ANY CIRCUMSTANCES. There’s a reason they call it practicing medicine.

There was a really fun period of time where we had to stop treating the cancer because Adi’s intestines exploded and he needed emergency surgery and they gave him an ileostomy and he almost died and then he started recovering but not really so they kept not giving him chemo and we had a couple more emergency surges for bowel obstructions and the surgeons were all, “We need to reverse this ileostomy and let him heal and then go back to chemo” and the oncologists were like, “CHEMO IS SO COOL DUDE LET’S DO IT NOW,” and we were so, so helplessly lost, and Guy finally told our oncologist, “You guys need to get your stories straight, because you have destroyed all of our faith in the system by constantly telling us different things,” and there was a big, epic battle and oncology won. Turned out to be a good decision.

5. The best doctors are like the most learned rabbis.

Bear with me. If you are not of the orthodox jewish persuasion, you may not have ever had the experience of “asking a rav” a question. But it’s a thing. People do it. And when you ask a rabbi for permission to do something, the easy thing for the rabbi to do is say, “Nope, sorry, you can’t do that.” It’s super easy to say no. But the most learned rabbis know how to say, “Yes, if you do this, and you do it for this reason and this way, then yes.” And most of the time, people are happy to live with the reason and the explanation, because the answer is YES.

We found that many, many young, less experienced doctors, and even those who were simply not experienced in pediatric oncology, were very happy to say NO. No, you can’t take Adi to the mall for an hour. No, you can’t spend a weekend at home. No, we can’t disconnect him from the port for a bath. No, no, no.

Our oncologist was amazing. He always found a way to say yes. Oh, your son who just had emergency surgery and desperately needs to restart his chemo protocol wants to go to France for a week? Sure, we can do that. Oh, you want to move treatment to Saturday night so that you can be home for Shabbat? We’ll make it happen. Oh, you want to go home for four hours so your son can see his room and check that it’s still there? Go, have fun.

So. These are things I thought. Think. Yeah. And now you know.

I Can Get There From Anywhere

noreply@blogger.com (WriterGrrl) — Wed, 21 Dec 2016 09:14:00 +0000

I really do recommend that you go back and listen to the archives of Question of the Day. It always makes me at least smile, and I usually laugh aloud at least once during the episode.

On the episode I (re-)listened to today (seriously, guys, transcripts would have been a great thing…), James and Stephen talked about life hacks, and whether they had any real value.

James talked about the whole concept of “life hacking” and how he found it frustrating that there are so many people who think that tiny tricks can do a lot to improve your life in a significant way. I agree. Sure, specific, small tricks can help with specific, small things in your life. I always hang my keys up next to the door when I walk in the house, so I always know where my keys are. I don’t really think of that as a life hack, but some people do.

I enjoy reading Lifehacker, and once in a while I learn something new, but I don’t think there are any real shortcuts to living a full and happy life.

The guys also talked about the difference between habits and meta-habits, and although I’m not sure that I agree with the terminology, I am definitely a fan of BJ Fogg and I read a LOT about habits.

In case you haven’t listened to the episode (seriously, WHAT ARE YOU WAITING FOR?), here’s the difference between habits and meta-habits, according to James:

Habits are the actions you want to establish, like flossing your teeth.
Meta-habits are the actions you take in order to establish the habit, as in, “Every night, after I brush my teeth, I will floss ONE tooth.”

The idea, popularized by BJ Fogg, is that once you establish a “tiny habit” — flossing ONE tooth, every night, you can then build on that tiny habit until you are ultimately flossing your teeth, washing your face, putting on moisturizer, and cleaning the bathroom before bed every night.

(My parents are reading this with furrowed brows, thinking, “Doesn’t everyone already do this?” NO. THEY DON’T. YOU ARE THE MOST ORGANIZED, DISCIPLINED PEOPLE IN THE WORLD. MOST PEOPLE DEFINITELY DO NOT DO THIS EVERY NIGHT.)

I love habits research. I’ve done BJ Fogg’s Tiny Habits course, and this summer I took a great class with Maria Brilaki of Fitness Reloaded that was heavily grounded in the concept of building on tiny habits. On days when I feel overwhelmed and unable to get anything done, I find it incredibly useful to take a moment and think about the tiny habits I have or want to have.

After I open my computer in the morning, I will write three sentences of my work in progress.

After I drink my second cup of coffee, I will unload the dishwasher. (A truly tiny habit would be to **open** the dishwasher, and that was how I started, but I’ve progressed.)

For the most part, I can do these things without thinking, which is the point. When you unload the dishwasher without noticing that you’ve unloaded the dishwasher, it’s a habit, and you will never, ever have to think about it again. This is awesome, unless you are my dad and you really enjoy unloading the dishwasher. (I’ve never known anyone else who gets such joy from unloading a dishwasher. Certainly none of my children find it remotely enjoyable.)

At various times in my life, I have been somewhat stressed. During one particularly horrible period of time, I actually, on THREE SEPARATE OCCASIONS, walked away from my car with the keys still in the ignition AND THE ENGINE RUNNING. You would have thought that the FIRST instance of this would have driven me to action, but you would be wrong. In my defense, my child was gravely ill and not expected to live. (He did. He is The Boy Who Lived.) The second time, also, did not prompt any actual action on my part. But the THIRD time it happened, I realized that I had a Problem, and I needed to find a way to Deal With It.

I created a tiny habit. After I get out of my car, I will lock the car. This may seem ridiculously obvious to most of you, but I regularly leave my car and my house unlocked. Partly because of where I live, and partly because I am an idiot.

Anyway, establishing the habit probably saved my life in some small way, because to lock the car, I had to have the keys in my hand, so I had to turn off the car. Which also meant putting the car in park. It was a rough, rough time in my life, and I did not handle it well.

So there you go. From a lighthearted discussion of my favorite podcast, all the way to childhood cancer.

It’s a gift.

Introvert or Introvert?

noreply@blogger.com (WriterGrrl) — Tue, 20 Dec 2016 13:39:00 +0000

Several episodes of Question of the Day talked about talking to strangers. Now, if you’re a Stephen Dubner fan, you probably know that he has a new podcast called Tell Me Something I Don’t Know. If you’ve never listened, you should, but let me give you a little tip. You might NOT want to listen to this podcast while you walk around your neighborhood, because it is REALLY funny, and several things will happen:

You will laugh out loud like an idiot and scare small children.
You will laugh a LOT and if you are clumsy like me, you will trip and fall.

TMSIDK is better suited for listening while, say, cooking food for Shabbat.

Anyway, when you know that Stephen has this other podcast, it suddenly makes a lot of sense that one of the ways that he starts conversations with other people is by asking them to tell him something he doesn’t know about what it’s like to have their job or do whatever they do. For example:

“Tell me something I don’t know about what it’s like to parent a child with special needs.”

Oh, hey, I HAVE A WHOLE BLOG ABOUT IT.

Seriously, I do NOT understand how I was never invited to be on QoD. It makes NO SENSE.

At any rate, I really enjoy this strategy, and I have totally stolen it for my own. It is a great way to get people to open up AND to make them feel important.

James has slightly creepier ways for striking up conversations with strangers, like taking pictures of their tattoos. Although, I guess I’ve done something kind of similar in the past… we were once at… the zoo, maybe? And there was a guy with a shirt that I thought was really funny, so I asked if I could take his picture. I just tried looking for the picture, but I couldn’t find it. You’ll have to take my word for it: it was really funny.

Both Stephen and James claim to be introverts. James says that his whole podcast exists because he can’t just have normal conversations with people; rather he uses his podcast as an excuse to interview people in depth and ask all the questions he wants to ask. He says that he prepares for weeks for a single interview (it shows!) and that 99% of the time, these are people he would really like to be friends with… but instead of just calling them to hang out, he calls them and invites them onto his show… and then never calls them again after the interview.

James doesn’t believe that Stephen is an introvert, which is funny, because Stephen also doesn’t think that James comes across as an introvert. Of course, Stephen describes his perfect day as “not seeing ANYBODY at all,” which made me laugh out loud, because for a long time I thought that was EVERYBODY’S perfect day.

If anybody asked me, “Hey, Abbi, are you an introvert or an extrovert?” I would say, “I’m a misanthrope.” Seriously, I find it incredibly difficult to be around people. When my son had cancer — did I ever tell you about the time my kid had cancer? I think I probably mentioned it once or twice — the second hardest thing was being around people EVERY DAY, because I am used to being in my house all the time AWAY FROM PEOPLE.

(Tangent: I was once asked if I wanted to come teach the kindergarten class in the private school my children attended at the time. I was horrified. "You mean... with children?" I asked. "Uh, well, yeah, that's kind of the point," they said. "But I HATE children," I said. "Um... don't you have FIVE children?" "Yes, but MINE are different. MY children, I love. OTHER PEOPLE'S CHILDREN? That sounds like HELL." They rescinded the offer.)

I am writing a book called I HATE EVERYONE. So, yeah. Misanthrope, introvert. Potato, potahto. Although this may explain why I have never been invited to collaborate on any podcast, ever.

Plate Emergencies and Pictures

noreply@blogger.com (WriterGrrl) — Mon, 19 Dec 2016 08:16:00 +0000

So, on several episodes of Question of the Day, James Altucher talks about how he recently read Marie Kondo’s book, The Life Changing Magic of Tidying Up. If you haven’t heard about it, the book presents a Japanese theory of decluttering — getting rid of alllllllll the excess in your home — and then organizing what is left. There are people who swear by the Kon-Marie method, and people who think it’s a lot of hooey.

James happened to read the book while he and his wife were traveling and living out of suitcases. When they returned home, they basically got rid of the vast majority of their possessions — clothes, books, furniture, and so on — and now they live in a house with very little stuff.

I have several thoughts about this. I like the idea, in theory, but I think it’s a lot easier for people who live alone or with just a spouse. When you have kids, you can’t just get rid of everything. One, kids come with a lot of stuff in the bargain, and two, a lot of that stuff simply provides comfort. Do I believe that Shir and Amit could function with one-eighth of the stuffed animals they currently own? Certainly — but why should I deny them something that brings them a lot of comfort?

I go through boxes of stuff on a fairly regular basis, and I try to get rid of stuff almost daily. When Guy travels, I almost always take that opportunity to get rid of stuff that he insists we need. This includes things like incandescent light bulbs in specific sizes for lamps we no longer own; reams of paper bills for 20-year-old credit cards we no longer have; extension cords for the US, which we cannot use, manuals for appliances we no longer own, broken pieces of things that I cannot identify, and much more. If I ask Guy, “Do we need this?” He INVARIABLY says, “YES!!!” DON’T THROW THAT AWAY!” Like most people, we have a bag full of random cords to things, broken ethernet cables, non-working charging cables, non-working chargers, and so on.

Guy thinks we need it all.

Recently, we bought new Shabbat dishes to replace the set we got at Target back when we lived in Los Angeles, so at least 10 years ago. The silver rim had washed away, and we had broken quite a few pieces, so we no longer had service for 12. We had service for, like, 8 or 9, and we alone are 7. So we bought new dishes, and we bought service for 16.

When we came home with the new dishes, I said, “Let’s get rid of the old ones. Do you want to toss them, or donate them?” Guy was horrified. “You mean… we’re not going to keep them in case we need them?”

Tell me, Internet. Have you ever in your lives had a plate emergency? I didn’t think so.

We offered the dishes on our community WhatsApp, and within 45 seconds, someone wanted them. I made Guy box them up RIGHT THEN and take them to her house, because I know my husband. “Never throw away anything, ever!” is his motto. I wish I could tell you how many free computer bags we have on top of our closet.

In the same episode where they discussed Kon-Marie, Stephen and James also talked about color photography v. black and white photography, which turned into a discussion of digital v. film, and do we take too many pictures.

One of the reasons I went with a 64GB phone instead of just 16 GB was because I wanted to be able to take as many pictures as I wanted without having to stop and think, “Should I take this picture?” Yes, I may have more digital clutter, but I get real joy from taking and looking at pictures of my kids.

And almost every time I take pictures of my kids, I think about something Phyllis Sommer wrote. Now, I tried to find the specific link, but I couldn’t, because after a certain point, I had to stop looking. Because Phyllis Sommer is a mother who lost her brave son Sam to leukemia, and she is a person who still gets up every day and walks on this earth and breathes and moves and lives. So I can only spend a certain amount of time on her blog before I can’t breathe. Because it reminds me all the time how close we came to losing Adi.

At any rate, Phyllis wrote a lot about the pictures she takes of her kids, and how she encourages people to save all the pictures, even the bad ones, because sometimes they are all you have left. And I have a lot of that feeling in me, ever since Adi was sick. I remember thinking it a lot during his treatment, because I was terrified that we would lose him, and the pictures on my phone would be all I had left. I have videos that I still can’t delete, even when they are videos of Adi saying things like, “TURN OFF THE CAMERA. GO AWAY.” I have to save them.

I’m jealous of people who don’t have to think like that.

41 Reasons to Be Grateful

noreply@blogger.com (WriterGrrl) — Fri, 16 Dec 2016 07:15:00 +0000

Tomorrow, I will be 41 years old. My daughter asked me last year when I’m planning to have my mid-life crisis, and I told her that I hope to avoid one entirely.

Here’s my list of 41 reasons that I’m grateful today. (I'll go back to writing about Question of the Day on Sunday. Also, don't get used to Friday posts. I can't imagine they'll be a regular occurrence.)

I married my husband. Have you ever read the story of how we met? It’s pretty good. He’s awesome. Maybe for his birthday I’ll write a list of all the reasons he’s awesome. Here’s something I wrote about him a long time ago.
Lior. Man, did I luck out with this kid. First of all, she is ridiculously responsible. Seriously. I could basically move out, and it might take people a while to realize it if Lior were running things. She’s amazing. Plus, she’s incredibly kind and caring, amazingly socially responsible, and totally a bleeding-heart liberal-in-training. (Not by me.) She cares so much about people. And Harry Potter. And Hamilton. Also, she’s beautiful.
Shir. Holy crap, this kid can find the bright side in ANY situation. We have a flat tire and we’re hours from civilization and about to be eaten by vultures? Hey, but look, that tree is perfect for climbing! You’ve never met anyone as happy as she is.
Adi. I can’t remember, have I ever mentioned Adi on this blog? I am grateful for the many things this child has taught me. And for every moment I get to be his mom.
Yoni. Wow. This boy has always just figured out how to make things work. He rolls with the punches and really never asks for more than we can give, which sometimes translates to not asking for what he actually needs. He just.. makes it work. We are very lucky to have him.
Amit. Man, oh man, I am grateful that we had Amit. Because otherwise all my kids would already be in double digits, and that would just be too hard. So we have Amit, and we will do our best to enjoy the few years we have left before he, too, becomes a tween and a teen.
My parents. And not only because they often pay for my Chinese food. For all the things they taught me and are still teaching me. For not dying of cancer. For being my on-call medical advisors. For being awesome.
My siblings. Because they knew me then and they know me now and they have a lot of shared history with me and they make me laugh.
Good friends. Like, the kind of friends who let you cry on their front lawn and still call you the next day. Or who bake you a cake and put a “20” candle in it when you turn 40. And the kind who sit with you in the waiting room when your kid has emergency surgery. And the kind who come take over for you at the hospital when you can’t spend one more second on the oncology ward and never mention that they left a wedding to be there. Yeah. Those friends.
Health. Yeah, this is on most gratitude lists, but that’s for good reason. And believe me, we don’t take health for granted.
Time. There is finally time. Or, there has always been time, but I have finally learned how to control it. I credit Laura Vanderkam. In fact, I would like to BE Laura Vanderkam when I grow up. Oh, really, Laura? You’re younger than I am? SHUT UP.
Amazing books. I read a LOT. Like, everything that’s published. Except anything by Jodi Picoult, because I hate her stuff. But, like, everything else. And a lot of it is CRAP. But some of it is really, really good, and I am so grateful for good books.
People like Gretchen Rubin and Laura Vanderkam (again) who write great books that help me make my life better all the time.
Apple notes. I live in Apple notes. That they sync between my phone and my laptop is just icing on the cake. I seriously don’t know why Word even exists anymore.
My house. I’m grateful that I have a house and that it is where it is and that it doesn’t leak (too much) and that it has heat in the winter and AC in the summer. In my ideal world, I would basically never leave my house.
My Kindle. I might not feel such passionate love for my Kindle if I still lived in America, home of awesome public libraries, but since I don’t, I rely on my Kindle. A subset of this one is that I am grateful for Overdrive books being available via the US public library system, and all the people who let me use their library cards to check out books on my Kindle.
Peanut butter. Really, I don’t think I need to explain this one. We’re all grateful for peanut butter.
Shabbat. I mean, yes, it would be amazing if, like, once a year we could just get a pass and have a week withOUT shabbat, but on the whole, it is awesome to have this time each week where no one in my house is on screens. Although I am still waiting for the heter (rabbinic permission) for my Kindle.
Science, and people who write about science-based nutrition and health. People like Maria Brilaki and Yoni Freedhoff and James Fell. You guys are awesome.
Wifi. We don’t even think about wifi anymore, except when it isn’t working, and then we’re like, “OH MY GOD THE WIFI ISN’T WORKING.” Let’s take a moment and appreciate the wifi. I still remember the olden days when I had to go to where the computer was located, plugged into the router, and use it while sitting at a desk like an animal, instead of on the couch, where God intended us to use our computers.
My Fitbit. It’s like someone looked right into my ridiculously competitive brain and said, HERE YOU GO!!!
My car. It is a grown-up car, NOT A MINIVAN, and it has lovely leather seats, and I rarely take the kids in it, so it’s pretty clean. I love it. The bluetooth works the way it’s supposed to and it plays my music when I turn the car on. This was one of my three criteria.
Not having pain in my hip. I had pain in my hip a couple of years ago, and it was terrible. I can’t even explain to you how much it hurt all the time. I got a cortisone shot and it was like magic for a couple of weeks, and then when the pain came back I got a course of high-dose NSAIDs, and now it’s three years later and I don’t have pain, and I think about that A LOT, because pain HURTS.
Hershey’s chocolate. I grew up in Pennsylvania, and Hershey’s will always be my favorite chocolate. Give me a bag of dark chocolate Hershey Kisses, and I will pretty much be your friend forever.
Coffee. Coffee is life. That is all.
Rainy days. Rain is great, especially because I work from home and don’t have to go out in it. I love to be inside my house and see the rain through the windows and hear it falling on the roof and hopefully not leaking into my house.
Sunny days when I can go for a walk around the neighborhood first thing in the morning, and then maybe again later on. Getting outside and breathing fresh air is amazing. Really.
The sound of leaves crunching under my feet. Because apparently I am still six years old.
Tweezers. So none of you ever see the little chin hairs…
Birth control. Yes, I would still like to build my family, because we believe we have more love to give, but there are many ways to add children to a family, and I would like to explore the ones that do not involve children shooting out of my hoo-ha.
The Walking Dead. Because everyone needs an escape, and that show is mine.
The background noise of my family. The news that Guy always has turned up too loud; the sound of Lior pacing back and forth and back and forth and back and forth downstairs all night long; the way Shir bursts out laughing at something on her phone; Adi talking to himself in his room as he plays; Yoni, narrating his video game play; Amit singing songs he makes up as he goes about his day.
My phone. No, really! I love that I have nine million pictures of my kids that I can look at whenever I want, and that I can always play my turn in Words With Friends and write something in Apple Notes, and access the Perets Family Calendar and send WhatsApps to my friends and family. And talk to people. Duh.
Friday mornings. Sometimes I go to the shuk, sometimes I just cook. But Friday mornings are always great.
The pictures of my grandparents in my office. Because they remind me where I came from. Every day.
Facetime. Because my kids and my parents can speak daily.
Eyeliner and mascara. I’ve recently discovered the existence of these magical tools. Yes, I am kind of an idiot about these things.
Restaurants. It’s awesome to go out and let all the people order exactly what they want.
Dessert. Always be grateful for dessert.
Birthdays, because they often involve presents, and I really like presents.
Comments. They make me feel loved.

I Am Totally Unqualified to Give This Advice, But Here it Is Anyway

noreply@blogger.com (WriterGrrl) — Thu, 15 Dec 2016 11:17:00 +0000

The third and fourth episodes of Question of the Day were about advice that you could give people in 10 minutes that would have some sort of positive benefit. James Altucher’s advice including wearing a doctor’s lab coat whoever you go, because then people will think you are important and in a hurry. He’s not wrong.

I think the best advice I could give anyone would be to be more like my husband and less like me. If you know both of us, you are probably nodding your head. In case you don’t know both of us, I’ll try to explain.

I am the kind of person who gets mad and stays mad. I can still remember mean things people said to me in elementary school, and I am still mad about them.

Guy cannot remember mean things our children said to him THIS MORNING. So, he definitely is not still mad about them.

I am NOT saying that my advice is to have a crappy memory. No, rather, what I am saying is, learn to let stuff go. It definitely weighs you down when you lug around all that resentment, and Guy is definitely better off without it. So, try to be like that.

When I was growing up, among the things I learned from my parents was that charity should always be given generously. In fact, I remember hearing my father calling people for a UJA campaign and explaining to them that unless they actually felt the effect of their donation — in that, because of the donation they did not do/buy something else, it didn’t count. Also very good advice, and I definitely think it makes your life better if you follow it.

The advice I would give my children (if my children were to actually need advice, which they do not, because they already know everything and do not need ANY HELP from anyone, ESPECIALLY NOT ME) is this: remember that as much as you believe the opposite to be true, your parents actually have your best interests at heart. Everything we say and do, we say and do because we want to spare you the mistakes we made.

On the other hand, the advice I would give myself and any parent is this: Let your kids make their own mistakes. They are not you. You cannot save them from the world or from themselves.

Probably most people will go for James’ advice over mine.

All About the Words

noreply@blogger.com (WriterGrrl) — Wed, 14 Dec 2016 10:03:00 +0000

So, if you’ve never listened to Question of the Day, it’s based on questions that James Altucher and Stephen Dubner mostly found on Quora, which is a site where people… wait for it… ask questions. And other people answer them.

The boys really, really, REALLY love Quora. Like, A LOT. I’ve wound up on Quora a few times when Google led me there, but it never got me super excited. Now, though, thanks to Question of the Day, I might actually… create an account and USE Quora.

Maybe.

Anyway, the second episode of Question of the Day was about words that the English language was missing. Some of the answers discussed were just funny things, like that English needs the word “whichith.”

Usage: Whichith president is Barack Obama? The 44th.”

It made me laugh, so I’m good with it.

Of course, the conversation quickly turned to words that exist in other languages, but not in English. And it is here that I have something to contribute, as an excellent speaker of Hebrew. (SHUT UP GUY, LIOR, AND SHIR. MY HEBREW IS TOO EXCELLENT.)

As any self-respecting speaker of Hebrew and English knows, Hebrew has words that English lacks. And so we simply use those words, in Hebrew, while speaking English. Even when speaking English to people who do not speak Hebrew. Basically, the general feeling here is, Tough. Should have paid more attention in Hebrew School. Or been born Jewish.

The two Hebrew words without which I personally cannot live are stam and davka.

“Stam” is a great word. You can use it in a variety of ways. For example:

What are you doing right now?

Stam. (Nothing.)

Where were you?

We got arrested. STAM! (Just kidding!)

She’s stam (just) a girl I go to school with. (The implication here being, she’s no one special. We’re TOTALLY NOT DATING.)

You stam (for no reason) got mad at me.

See? Very useful.

Davka is also used to mean many things. For example:

You davka (just to annoy me because you know I don’t like it) made the chicken in sweet sauce.

Don’t do davka! (Don’t steal your bother’s toy for no reason/do the thing everyone has asked you not to do/not eat the thing I told you to eat/eat the thing I told you not to eat/etc. etc.)

It was davka (contrary to what I expected) not bad.

Why davka (precisely/exactly) now?

I use these words all the time, in Hebrew and in English, and without regard for the understanding of the listener. So, now you know.

New Topic!

noreply@blogger.com (WriterGrrl) — Tue, 13 Dec 2016 17:26:00 +0000

Recently, I started listening to the podcast Question of the Day, with Stephen Dubner and James Altucher. I realize that they’ve since stopped recording the podcast, but I’m pretty sure that’s not BECAUSE I just started listening. I could be wrong.

Anyway, I’ve been listening to the episodes — each one is somewhere between 10-20 minutes — while I go for walks in the morning to start my day. And I quickly realized that I had one major issue with the podcast: Stephen and James are not asking me for MY opinion on the topics they discuss. This made it very hard to listen to the podcast, because I was thinking about my own takes on their discussions, and NO ONE WAS HEARING MY BRILLIANT THOUGHTS.

Then I remembered that I have an old, neglected blog, and even if NOTHING IS AWFUL in my life right now, I could, you know, blog about my thoughts. And if those thoughts are reactions to the episodes I’m listening to, that would give them some sort of narrative form. Maybe.

So, I don’t know if I’ll write about every single episode (they recorded 178, I think, and then put the podcast on indefinite hiatus), but I have a LOT of thoughts in my head.

On the first episode of the show, the boys (that’s what I call them) considered the following question:

Why are so many people content to work at regular, 9-6 jobs?

This, my friends, is an excellent question, and as a person who only held such a job for, like, a total of maybe two years of my life, I am TOTALLY qualified to answer it.

Because they are dumb.

Ha, ha! I am totally kidding. Here’s the thing: I HATE being tied to a job. I recently re-proved this to myself. There are many, many reasons that I am a freelancer, but the biggest one is that, for me, the promise of a steady paycheck is simply not enough to ward off the INSANE BOREDOM that comes from doing the same thing every day. Also, I really hate being around other people. (NOT YOU. OF COURSE NOT YOU. YOU ARE AWESOME AND I LOVE BEING AROUND YOU.)

I am married to the most amazing Guy in the world. (HIS NAME IS GUY, SO IT’S FUNNY.) The very idea of being entrepreneurial gives him the newbie jeebies. It took him a long time to admit this, perhaps even to himself, so he used to pretend that he was mildly interested in my various business ideas and what have you, but Guy CRAVES that structure that comes with having a regular job. He likes going into the office. He sometimes complains about office politics and he really hates working with idiots, but for the most part, he is SO HAPPY to go to work, do what they tell him, and get a paycheck.

His entire approach to life is different from mine. If he’s getting paid, he honestly doesn’t care what they’re asking him to do. Answer phones? Sure. File papers? No problem. Sit in boring meetings? RIGHT ON. He says this, in so many words. “If they’re paying me, I don’t care what they want me to do. If they want me to paint the office and they’re going to pay me what they would pay me to be a software architect, then I’ll paint the office.”

So, apparently there are people like this. People who truly feel content doing this. I am not one of them, but Guy is. And we need people like Guy, because otherwise people like me would have no one to marry to support us.

On Fear

noreply@blogger.com (WriterGrrl) — Thu, 21 Jan 2016 10:53:00 +0000

I spend a lot of time being afraid.

I am afraid of being too happy. The last time I was really, really happy was two and a half years ago. Everything was good. Guy was starting to travel less, Lior was finally happy, the house was finally ready, I loved Adi's school so much. I was so happy. I told people I was happy. And then Adi got sick, and I remember doubling over in the emergency room because I could not breathe.

I am afraid sometimes that I brought this on. The evil eye. I let it in, because I told people I was so happy. I think I felt like this for a long time. I think I still feel like this sometimes, especially when I am alone in the house, or when everyone is sleeping late at night.

I am just plain afraid. We are nearing the end of treatment. In February, Adi is scheduled to finish maintenance. He'll keep taking antibiotics for another few months, but he'll be done with the oral chemo. And then we'll see what happens, and I am terrified. I catch myself holding my breath. I have to tell myself to breathe, to feel the air go in and out. To let go of the fear and just be.

I am afraid of failing my family. "How are your other kids," people ask, and I make a joke about the therapy and the psychological damage, and the people laugh, and I lie awake at night and think, Will they every forgive me? Will they ever be okay? Have I ruined them?

I am afraid of the work that lies ahead. For two years, we had one goal: Keep Adi Alive. And now that he is, we have to go back to all the things we set aside for so long -- the reading, the writing, the math, the homework, The Plan for the Future.

Sometimes, the sun shines and I look out the window at my garden and the boys are sitting together playing, curled up around each other so that you can't tell where one ends and another begins, and the girls are not insulting each other and the kitchen does not look like a bomb hit it, and I think, This is so good, I am so happy, and then I think, But, and then I think Stop and I can remember the sound of water in my ears and the air rushing out of the room.

Sometimes I am afraid I will never breathe deeply again.

You need to just get over it.
You need to let it go.
You could get hit by a bus tomorrow.

I spend a lot of time being afraid.

Cancerversary 2

noreply@blogger.com (WriterGrrl) — Tue, 22 Sep 2015 11:58:00 +0000

So. Here we are again, Erev Yom Kippur. But this time, I’m sitting on the couch watching Adi navigate through Houston using Google Street View (to find the garbage truck, natch) on the computer in our home. Definitely better than last year or the year before.

I suppose I'll start by asking forgiveness from all of you for anything I might have done to hurt you in the last year. I'm pretty sure I did something. Possibly something fairly benign, like not call you back or answer your email, possibly something worse. I apologize. I'm sorry. I might have meant to do it at the time, but I regretted it afterwards. I'm human. Sorry.

Next up, gratitude. I am so grateful for the health of all my children and my parents and my husband and myself and all the other people I know who are healthy. I am grateful for every day. I am grateful that today I had the luxury of being annoyed at my computer for not connecting to Wi-Fi until I restarted it. I am grateful that today I could mutter under my breath as [insert child] did [insert thing]. These are not things I take for granted, even if I sometimes forget for a moment that our time is fleeting. I almost always remember with the very next breath. Even now, as I raise my voice to the child who is shoving the sofa across the floor, I am grateful. Also, truth be told, a little irritated, because LEAVE THE SOFA ALONE. But grateful.

Sorrowful. For the friends we have lost. Some we lost to the terrible disease that is childhood cancer. Others we lost to horribly mundane car accidents. You are all in my heart. So much of the time. I think of you so often. I smile when I remember something funny you said or did. I laugh when I remember your smiles. I cry when I think of all that lost potential. I weep for your mothers and fathers, your sisters and brothers, your friends. I hurt when I think about how unfair it is that you are gone.

Fear. So much of my time is spent fighting fear. Yesterday, I took Adi in for routine bloodwork and a visit to the neuro-oncologist. As you do. And in the time between the CBC and Chem Panel being taken and when we got back the results, I saw a million terrible scenarios in my head. I don't try to do this. In fact, I actively try NOT to do this. But, as my fellow cancer peeps know, cancer changes everything. Childhood cancer leaves scars everywhere. I can't tell you how many times I wake up in terror thinking that I forgot to give my kid his pills, or inspect his body for strange bruises, or freeze when he coughs. I can't tell you how my whole body reacts when I walk into our hospital, even for "routine" visits. I can't tell you how scary it can be sometimes to check Facebook, because I'm afraid of what I'll discover.

Amazement. I have seen miracles. I have seen children -- yes, children, more than one -- come back from the brink of death. Children whose parents had released them, had whispered to them, "You don't have to stay here for me. It's okay." I have seen those children suddenly -- and it is sudden, never subtle -- suddenly awaken, with some renewed strength that medicine cannot explain. I have seen these children suddenly grow stronger, take tentative steps forward, and then suddenly race towards health. I have seen miracles. I don't know who decides -- or how -- why this child gets one and that one doesn't, but I have seen them, and I am amazed.

Grateful, again. For the friends who have helped us. For the people who have, with tiny kindnesses and grand gestures, made this journey easier. For the strangers who have prayed for my son and my family. For the people who have made me laugh on the darkest days. For the people who have not allowed me to wallow in my own grief -- and for those who have simply stood close by, ready to catch me if I fell.

Sad, still. For everything that we lost, as a family. For an innocence that is gone. For a peace that we may never find. For a balance that is forever askew. For my children, all my children, who are changed.

Grateful, again.

Heartbroken, again.

Grateful, always.

Epistle: To Abbi, 12 Years Ago

noreply@blogger.com (WriterGrrl) — Sun, 06 Sep 2015 13:57:00 +0000

Dear Abbi,

First of all, you are SO YOUNG. I would tell you to revel in this, but actually, you were very aware of being young. You were the youngest in your little group for a long time, until you moved, and you constantly felt that you were younger and less competent than everyone around you. So even though at almost 40, I am jealous of your late twenties youth, I am not jealous of how you felt about it.

Second of all, right now, you are enormously pregnant, and you are perhaps somewhat anxious given the bed rest and the ENORMITY of yourself, and all that, but honey, YOU HAVE NO IDEA WHAT WORRY IS.

Here's the thing: right now, your life is a freaking garden of roses, and you don't even know it. You have two kids who are developing on schedule, and while they are sometimes weird, their weirdness is well within the range of acceptable. Also, their feet don't smell. DO NOT UNDERESTIMATE HOW IMPORTANT THIS IS.

In just over a month, your entire world will be rocked, and that's not a good thing. Everything you thought you knew will turn out to be wrong. You dreamed of drama in your life? Oh, honey. Oh, honey. You will get your drama. And you will learn, as does anyone who lives with drama that drama is seriously overrated. Boring is AWESOME.

In just over a month, you will have a baby! (Spoiler: it's a boy! Mazal tov!) (That's not really a spoiler, because you knew that ever since the ultrasound tech with the awesome accent and the actual PEACOCKS WALKING AROUND HER HOUSE told you, "You see ziss? Ziss is BALSS." And you will get a LOT of milage out of that story.)

Anyway, this baby, this boy... well. The thing I most want to tell you is, "It's going to be okay." But I can't quite tell you that, because of all the twists and turns this story takes along the way. But I CAN tell you this: "You will get through this." I know you won't think you can. I know that in the first days after that baby is born and hospitalized and intubated and extubated and tested and retested and not responding right and jaundiced and his big head and not breathing and turning blue and not eating and not waking -- I know what you are thinking. You are thinking that it would be so easy to just get into bed and not get out again. You are thinking that this is too hard, that this is not what you signed up for, that you take it back.

But I also know that you will get up every morning and get dressed and go to the hospital and sit with your baby as many hours as the NICU nurses will let you. I know that you will come home and try to smile at your daughters when you want to scream. I know that you will pump copious amounts of milk to take to the hospital. I know that you will keep putting one foot in front of the other, and I just want you to know that you will get through this.

I wish I could cover your ears when people come forward with ridiculously grim prognoses about that beautiful boy. I wish I could erase those words from your brain, that you could unhear them.

I wish I could show you the video of Adi riding a bike, pictures of Adi's smile, the sound of Adi laughing, because if you had those then, in those first weeks, everything would have been so much easier.

I wish I could have had your back in the grocery store that time when that idiot woman tried to make you feel like you had caused everything that happened to your son by having a home birth. I wish I could have punched her in the face for you. I'm pretty sure that's one of my lifelong regrets, not punching that woman in the face.

Looking back, with the lens of maturity and hindsight, I have to say that you kicked ass, but you had no idea you were doing it. You were so hard on yourself for so long, and I wish it had been easier for you.

Love,
Your older, wiser self

P.S. Buy AAPL and GOOG.

The Roller Coaster

noreply@blogger.com (WriterGrrl) — Wed, 14 Jan 2015 11:36:00 +0000

Yesterday was one of those days where you go from extreme to extreme. Elation to depression, in a matter of seconds. That's fairly typical for a cancer parent.

Two days ago, it had been fairly clear that we'd be discharged either yesterday or today. So yesterday morning, I told the doctor who did rounds that Adi's brother was having a birthday party yesterday afternoon, so we really wanted him to be at home, and ultimately she agreed that instead of a day in hospital with no antibiotics (that is, just for observation), she'd let us go home. But she couldn't possibly remove his PICC-line, because, "What if he needs it?"

"You realize it's about to come out on its own, right?"

"If you want to go home today, I'm not removing the PICC-line."

I said fine. And then I went upstairs to oncology to tell our doctor and have him remove the line, because, DUH. Anyway, I was in a great mood when I got upstairs, and then I saw my friend who told me that she was waiting for bone marrow results for her son, and she'd been a wreck, especially after what happened to T, another child on the ward.

"How is T?" I asked, and she looked at me.

"You didn't know?"

"I mean, I know he relapsed, but I..."

"Saturday night," she said, and it was like a kick in the stomach. Again. Again. Again. Because T. was a kid who was ALIVE. Who was ALWAYS talking, always running around, always smiling, always laughing. Always kind, always going.

"I thought you knew," my friend said helplessly, and I couldn't make my mouth say all the words inside me, and I think I said something, but all I could think was, "I need my husband. I need Guy," because it hurt so much in that instant, and in the middle of being so happy and excited that Adi was going home, I just wanted to curl up on the floor and cry.

And the oncologist took out Adi's PICC-line, because DUH, and we went home, and Yoni had an amazing birthday party and Guy broke the Internet in our house and Adi was home and everything was great and I couldn't stop smiling at the party and when Mambo Number 5 came on, I danced(because DUH), much to the embarrassment of my children, and everything was wonderful, and then I remembered and it was like a kick in the stomach. Again.

And this is how it is. Because as happy as we are, there is always a tiny screaming terror in the back somewhere that we can ignore a lot of the time, maybe even most of the time, but it's there, and it's waiting, just waiting, to kick me in the stomach. Again.

Epistle: To Adi, On the Occasion of the Final Day of Active Treatment

noreply@blogger.com (WriterGrrl) — Wed, 24 Dec 2014 12:22:00 +0000

Dear Adi,

Before. Note the belly. That's gone now.

Whoa. It's been a long 16 months. Only twice as long as the oncologists told us it would take!

Right after diagnosis, before the port was put in.

I mean, let's not get TOO excited. Sure, today you had your last dose of active treatment chemo, but it's not like the road ahead is going to be easy, or, you know, WITHOUT CHEMO. We've still got those six intrathecals to look forward to, after all. And there's the oral chemo you'll be taking for the next year or so, which, YAY, oral chemo!

Home after the first hospital stay.

Everywhere Adi goes, Yuval goes.

But, indeed, there is cause for celebration, because WE FINISHED ACTIVE TREATMENT. That's kind of a big deal, and the weirdest thing is that you're not even here today. You're off having a grand old time in Eilat, with your peeps, 119 kids with cancer and 100 counselors and a whole bunch of support staff making sure your every need is met.

What my kid does on vacation.

Not at all disturbing.

You've been out of school for 16 months. And yet, you've learned an enormous amount. You've learned to deal with situations that are beyond your control. You've learned that on days with abdominal ultrasounds or CTs or intrathecals or any of a host of other tests, you need to be fasting -- and you even understand why. You know the meds you take, in what form, and you know instantly if something has been changed. You know how to share a room with someone else, you know that sometimes we can't go to the playroom, that sometimes you need to throw up, and that soon you'll be better.

So tired. Just want sleep.

Eff this... stuff... is what I think you're trying to say here.

Because what kid doesn't dream about being the garbage truck man???

You know that soon you'll have surgery to fix your stoma. (I am personally quite excited about that one, because you don't know how to do laundry, so that task falls to me. There's a lot of it.)
You know that soon you'll go back to school. After SIXTEEN MONTHS. This should be... interesting. I think you'll be happy to be back in your misgeret, back to your regularly scheduled program, as it were. We've got a lot of work ahead of us, but you've never been afraid of a little hard work. You may object to it, often loudly, but you've never been afraid of it.

I will walk with my pole BY MYSELF.

The very fact of your existence at this moment is miraculous. Truly -- medical science can't explain how you survived multiple bouts of septic shock, two bowel perforations and two bowel obstructions, methotrexate toxicity, anaphylaxis brought on by PEG Asparginase, and I'm sure I'm forgetting something else. Amazing how you can lose count of your kid's near death experiences.

As long as there's cake, it's all good.

Or Belgian waffles. That works, too.

You are my hero. You and your smile -- you are amazing. I love you. So much.

I love all of these pictures too much to choose one.

Love,
Mommy

Epistle: To Lior, Because the Words Are Spilling Out of Me

noreply@blogger.com (WriterGrrl) — Mon, 22 Dec 2014 10:03:00 +0000

Dear Liorie,

Eleven years ago, when Adi was in the NICU, I was terrified. I had no idea what was wrong with my baby, this new creature I hardly knew. I didn't know if he would survive. I didn't know if he would live, only to be afflicted by horrific disabilities. I didn't know what was wrong, or what the future held. And I was equally terrified that one day, you would come to me accusingly and tell me, "It's NOT FAIR that I" -- and here, I didn't know what, exactly, would come, but it would be something, and it would be because of this other child, and it terrified me, because I knew you would be right.

You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.

I think I imagined myself bravely heroic in these discussions, holding back my tears as I let you shed yours, allowing you the space to resent your sibling's special needs while respecting him.

I think I wasn't very smart then.

You have never thrown Adi's disabilities, or his leukemia, at me in anger. You have been the graceful one, doing what is needed, often setting your own needs aside. This is not to say that you have never railed against the unfairness of this mortal coil, but you have always done so in reasonably good spirits.

Some years ago, I was terribly angry with you and your sister. Honestly, I don't remember the actual incident, but I do remember writing the post. I remember how awful I felt, listening to you and your sister going on and on about how horrible we were.

One day in the future, I'm sure I will see this post, and I won't remember The Math Test Which Shall Not Be Mentioned and The Incident of the Text Message and the other many, many difficulties of these, your teenage years, but I will remember how much it hurt every time we had to reprimand you. Every time we had to take something away, to say no, to remind you to study. I will remember how I had no idea how to tell you how very much I love you and that I am NOT KIDDING when I say that it hurts me more than it hurts you to study for that test and to do that thing and to not do that other thing. I will remember how it caused me physical pain when you wouldn't answer my "Good morning," because your righteous anger burns in you.

Oh, you are so very clearly my daughter.

You were the first to be mine, and for a time you were the only one to be mine, and you are always mine. It is always you.

You are so wise beyond your years, and sometimes all I want to do is protect you from the cold, hard truths of the world. I want to prevent all the mistakes you will make -- you will make them, it's inevitable -- but I want to spare you the pain of making them, as impossible as that is. I want to just give you all the answers now. But it doesn't work like that. You have to forge your own path, to make your own mistakes, and to learn in your own time.

We will survive these tumultuous teenage years, I know that we will. And I know that if this is the worst -- these mornings of stormy silence, these evenings of bitter tears -- that we are very, very lucky. Even if right now you think I am the most horrible person in the world, and not very smart, to boot, we are very, very lucky.

I love you so much. I can't find words to tell you how much I love you and how amazing I think you are.

Love,
Mommy

Yesterday

noreply@blogger.com (WriterGrrl) — Wed, 03 Dec 2014 17:14:00 +0000

Yesterday was one of those days that, while things are happening, you can already imagine telling people the story afterwards. You know how you'll sound, where you'll roll your eyes, where your audience will laugh, everything. But it was also one of those days where you just keep saying OH MY GOD MAKE IT STOP MAKE IT BE OVER HOLY CRAP I CANNOT TAKE ONE MORE THING.

It started Monday night, when Adi spiked a fever after two days of Ara-C. Not unexpected, as Ara-C is known to cause fevers. But it meant a trip to the ER, nonetheless. And then, out of nowhere, suddenly Adi was in pain. Stomach pain. And since we've been down that road before, I knew immediately that we weren't going to be getting IV antibiotics and going home.

We were admitted, even though the x-ray showed nothing, because with Adi's history, you don't mess around.

Tuesday morning, we had another abdominal x-ray and an ultrasound. The ultrasound showed "something," but to get more clarity, we'd need a CT. With contrast. So Adi drank a litre of contrast dye, and then they put in a peripheral line for the contrast material (it clogs picc lines), and off we went. (Well, actually, we waited hours and hours, and then off we went.)

They gave Adi propofol and sent me out of the room. And then I suddenly realized it had been 25 minutes, and WHAT THE HECK WERE THEY DOING IN THERE???? So I went over to the door and heard Adi SCREAMING, and then the doctor opened the door and said, "It's okay, we had technical difficulties."

Um, what now?

Well, they started putting in the contrast material, and the peripheral line burst. And then when they tried to use the picc line? It tore. But no problem, because he was already out, so they could put in a new peripheral line, right? Except that when they stuck him, HE WOKE UP, and I wasn't in the room, and he was NOT HAPPY, and then the stoma just started leaking poop everywhere, and then he started screaming. But somehow, they had gotten the CT done, the doctor told me.

Except that, of course, it was inconclusive, and so Adi had to drink another litre of contrast dye, although this time they did the CT without propofol, and then they told us that Adi has an infection in his bowel. Of course he does.

So, he remains NPO, on antibiotics, inpatient, until further notice.

Epistle: To Shir, on the Occasion of Seeing Your Smile

noreply@blogger.com (WriterGrrl) — Mon, 10 Nov 2014 14:48:00 +0000

Shir Shironet,

Oh, Shir. Where to start? You live in a world of extremes. Things are always wonderful or terrible, and usually both together. Nothing is ordinary. "It actually turns out that Monday is my favorite day of the week," you just told me. "Which is really weird."I asked why Mondays are good. "Because we end at 3:00," you answered. (That's early.) "And we have two hours of algebra and two hours of science." And that's good? "Yes," you assured me. "I'm really good at algebra."

Most days when you come home, you announce that you're about to die, that it was the most terrible day ever in the history of days, but GUESS WHAT? And then you tell me about some AMAZING WONDERFUL STUPENDOUS thing that happened, often involving cake.

"It was the worst day of my life, but it was great," you say, with absolutely no irony whatsoever. It is a gift, your zest for life, it is a gift that I hope you treasure.

You are the second child in the family, but you have carved out a distinct spot for yourself. The walls of your room are covered with pictures you've drawn or clipped from magazines. Sadly, you have also taken marker and spray paint to much of your furniture, but we're working on slightly tempering your artistic tendencies. You are incredibly social, and you are always looking for ways to earn money so that you can immediately spend it (often on cake. Or candy.).

You are quick to point out the unfairness of life. Any slight, real or imagined, is immediately magnified, dissected, and held up as an example of why you must have been somehow taken from your real family -- royalty, natch -- and left with... us.

Music is such an integral part of who you are, obviously. It's right there in your name, and you are nearly always listening to some song, singing something, bobbing your head, or talking about how this or that song or singer is the most amazing, but you're going to have to kill him or her but it's fantastic, but it's so horrible.

This is you, Shir, a study in contradictions. And I hope that you never change.

I love you.

Love,
Mommy

Epistle: To Yoni, On the Occasion Of Being Called Into Your School

noreply@blogger.com (WriterGrrl) — Thu, 06 Nov 2014 16:51:00 +0000

Dear Yoni,

So, like a week and a half ago, your guidance counselor called and asked how things were going.

"Um, fine? I mean, we're at home, and we're starting the last round of treatment soon, and everything's good, and Yoni's been really happy, and blah blah..."

After a few minutes, I realized she wasn't saying anything.

"Was there... something you wanted to talk about?"

"Well, yes. There have been some... incidents."

"What?"

"Just some... we feel that... Yoni is having trouble being his best self."

I pressed her for details, Yon-yon, but she didn't give me any. Instead, she asked to meet with me and Daddy, and we talked about something towards the end of this week, but then a few days later she called and said that the meeting would be Sunday morning at 8am.

That day, when you came home, I asked if something had happened at school.

"It wasn't my fault," you said. And slowly, you told a somewhat horrifying story about a science experiment using acid and rocks and how another student took acid on his eraser and put it on your shirt and so you had NO CHOICE but to do the same thing back to him, and Yoni, I must confess that I was pretty certain we were rearing a serial killer. ACID??? REALLY??? That's why, when you told me about the goodbye party for the substitute teacher, and you told me that even though THE WHOLE SCHOOL KNOWS that you HATE chocolate, two girls announced that they were making chocolate balls, and so maybe I could make meringue cookies, THAT'S why I said yes. Because I figured that then, years later, when your serial killer nature revealed itself and inevitably the media blamed your mother, I could tell them that I MADE THE COOKIES.

So then it was Sunday morning, and we came into the meeting, and basically what they told us was that you, Yoni, are awesome, and we, your parents, are NOT SUPPORTING YOU ENOUGH IN YOUR AWESOMENESS.

Apparently, twice last year there were these projects that they deliberately assigned you so that you could stand up in front of the class and present them, becuase you LOVE presenting, and then you came home and told us you needed to do these projects and we were like, "Oh, Yoni, we can't get you any supplies or help at all because we are SO TIRED and YOUR BROTHER HAS CANCER," and you went back to school and told your teacher that you were sorry, but your parents could not help you and you could not do these projects, and they wanted to make sure that, you know, we stopped dropping the ball. WE, not YOU. You, Yoni, you are AWESOME. It's just that your parents kind of suck lately.

So,Yoni, this is my way of saying that I am sorry. I am sorry that you have been getting short shrift. This has been happening for basically your whole life, so you're probably not even fazed by it, but it's not okay. I'm sorry that I have not been good enough. I promise to try to be better, because you deserve better.

I love you.

Love,
Mommy