Monday, January 16, 2017

What Happens After Your Kid Survives Cancer

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:

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

Here is my actual reality:

  1. 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.
  2. 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.
  3. 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. 
  4. 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. 
  5. HAHAHAHAHAHA. SO NOT TOGETHER. Yep, I vacuum a lot lately. Trust me, OCD never happens for a good reason. 
  6. 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.

Thursday, January 12, 2017

Gifts and Gift Giving

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.)

Wednesday, January 11, 2017

I Know You Are, But What Am I?

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.

Monday, January 09, 2017

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

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.


You are awesome, Yoni.


Sunday, January 08, 2017

Anger, Marriage, Children, and School

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.


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.


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.

Thursday, January 05, 2017

Family Vacations

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. 

Tuesday, January 03, 2017

Reading is Definitely Fundamental

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.