The road ahead

I’ve never run a marathon before and I don’t plan to. What a ridiculous idea! The body was never meant to run 26 miles. Our bodies were meant to escape predators, but only at fast spurts. There was never an evolutionary advantage to sustain a steady beat for 26 miles. You would be dead by mile 2. The whole idea of this stuff is ridiculous. Plain stupid. You all seem stupid to me (no offense).

I just never understood this bucket list item. 

I remember when Dana ran the marathon. I was anti the whole way through, but I cheered with a sign attached to a yardstick with a donut on it. It was for some reason important to her. Run Dana run! Run for that donut. She might as well get a treat at the end of these yards right? 

And I remember her collapse right across the finish line. Of course, she finished, she’s Dana, but it was hard. She did not feel good. Once she had her wits about her, I was very clear “never again. This is stupid. This is the waste of your talents.”

What are you trying to prove people? Instead of training for a marathon, volunteer! Volunteer here or do something to better the world. There are better ways to spend your time. TRAIN your mind. TRAIN others. Not your body to do something freaking dumb and selfish.

And here I am in a fucking marathon.

I don’t think I’ve ever told you about the road ahead…or maybe I have and I’ve forgotten.

Equally plausible at this point.

We have 7 total rounds of high dosage chemo, surgery, and immunotherapy. And possibly more. We don’t really know.

What is a round of chemo you ask? It is when you have 4 days of drugs that kill everything bad AND good in your body for four days. Then your body slowly begins to shut down. You get sick as the chemo eats the tumor and cancer cells. Eats it. But with it other good cells.  You will need blood transfusions, platelets, minerals, pretty much everything that makes you tick. To do this you will most likely need to be hospitalized (as Jacob has) as you have zero ability to fight anything, no white blood cells in your body. Zero and it lasts for days. You will be on antibiotics fighting for your body that is defenseless.

They will at some point inject you to stimulate your bone marrow to make white blood cells, they wait to you are at a certain number, and then they KNOCK you down again.

We will do this 7 times. 

Numbers 1, 2, 4 and 6 are the same cocktail. 5 & 7 are different. Side effects change each round, but include everything from incredible pain, nausea, unwillingness to eat, to sores all over your GI tract that can make you never want to eat or poop again. Even with the same cocktail, you can have different side effects because each time your body does chemo it’s a bit weaker. 

Surgery. 

Between rounds 3 & 4 is surgery where they will remove the tumor. The originator. The source. This is a big.

Then you do chemo again (2 more round) and then you start immunotherapy. Wish I could tell you about that, but I have no idea. I can’t think that far, but I know Steve has. Immunotherapy is another couple of months.  

So we have about a year and change in front of us. 

It’s a freaking marathon and I’m on mile one, but the trauma makes it feel like mile 21 and I feel like I’m running that mile over and over. 

And I hate running. 

I’m mom.

Its 3:30AM and I’m not going to sleep.  Its going to be a long night. I’m not feeling so mighty.

Before bed, Jacob was so upset.

“BEES! There are bees in the room. I’m so itchy” and he swatted at his ear. 

 I find three little strands in his ear. I pick them out. There are no bees. He feels hair falling out and it’s itchy.

I tell him that his hair is falling out.

“I don’t want to be bald. I don’t want to be bald like Lou.” 

Lou is the child he met at NYU. The first bald child of so many that he has seen since, but he is the only one Jacob can name. Here in “patient” world, you don’t make friends. Friends are dangerous. Friends carry germs. He has no place for friends in this time and it hurts me for him, because he doesn’t understand that…yet.

It is only time before he notices. Everyone is on summer break and he still likes my show. He feels at home at the hospital, but I know that this is fleeting. I wonder when the novelty will wear off? 

It’s like the first few weeks of school when all the students are on their best behavior. They are feeling out their teacher. Seeing where you can push and where you get straight into line. Its just human nature. We all put on our best selves for strangers. We only show our thorns to those we know and trust will stick around.

So I’m having a pity party. Its a party of one and my party is so painful that the only guest is sleeping, but the party is not for me. 

It’s for Jacob.

Okay…I’ll be honest…It’s for me too.

It sucks to watch someone you love go through this, especially a five-year-old who has done nothing in this world, but adore his brother and be a kind friend. 

So forgive me. Forgive me, person, five steps behind, for giving you hope that you can just ANGER it away. That you can look at people like Eve and say, the human spirit is capable of anything. Don’t get me wrong at times I feel that way (often). I see these families and kids and how incredible they all are and I want to do is DO. I want to WORK.

I really actually recommend that? Do you work? If you do, do it as often as possible. It’s good for you and your child. You need to work. I would argue that your work needs to helps make the world better to make up for all the ugliness around you.  At least that is what’s working for me, but that has always been what’s worked for me.

So again sorry, no judgment! Sorry!

You do you. Sell cigarettes for all I care. Do whatever you can to survive. 

Because at other times you can look at the exact same thing, like Eve, and come up with a completely different ending. At a different perspective, (from a pity party perspective), you just see suffering. Suffering for no reason. Suffering at the hands of evil. 

You even begin to wonder what Eve would have done if she grew up with her parents and went to school with her twin sister like normal girls.

Maybe she would be a singer instead of “in real estate.”

Every day you will have to remember your strength. 

You will have to surround yourself with people that remember it for you. You will have to separate from those who don’t serve you or your child (and that is painful! So painful). You will be surprised by who shows up in your life and who doesn’t. How distant friends reach out but those closest to you let you WAY down. And trust me…you will never forget. You will be tormented by the fact that you will never forget or forgive, but how can you? 

But just remember how you handled it. How you were there for your child. 

How I was there for Jacob.

I told him it would be okay. That hair would grow back. That daddy would go bald too, but he didn’t care. “I don’t want to be bald!”

And then I took his hand and I placed it on my roots, do you feel that Jacob? Do you feel that bump? Those are my extensions?  See this?! Its all fake. None of it is real. Mommy is bald too. This was exciting. This was distracting. He felt my head like an alien planet. It rocked his world. This was cool. He didn’t ask any more questions.

And it’s semi-true, I’m not bald, but I don’t have much hair. I struggle with hair loss. Never had thick hair and after kids, some of it never came back. I would walk the streets without makeup and clothes, before being seen without my extensions?! NEVER. I would feel naked and ugly.

I get it. This is upsetting.

And I’m not saying you need to have extensions to navigate this, but honestly, they are amazing and something to consider. What I am tyring to express is that you will say something that works. Something that he/she can understand. Something that shows empathy, love and sometimes humor (if you can pull it off). 

And only you can do that.

Because you are mom. 

Today the pity party ends

First step of time traveling is research.

You don’t want to be unprepared. You don’t want to look like an idiot. You need to be in the know, buttoned-up, ready. 

I read the newspaper for the FIRST time in 3 weeks. 

For those who know me well this is unheard of. I look at the news first thing in the morning, mid-day, and then a heavy dose at night. A heavy dose from multiple sources, because I want to understand the “other” side. You can’t know the “news” if you pick your narrative. So many people are “informed,” but only feed their own needs, their own ideals. You can’t make judgments without something to judge against. Its basic math. You can’t say greater than if you don’t know the variable on the other side.

I took news seriously.

I need to jump to your time. I need to rejoin the clock. I needed a quick read. Time is everything. I read the NYTimes morning briefing.

Four takeaways for you from the other side. From a perspective that you can’t see. 

First, nothing has changed. Seriously. Really nothing. Same old stuff. I recall when I was in your time that each day was a roller coaster. Each news cycle had some disaster to scream about, to debate, to talk about over dinner. But let me tell you, it doesn’t. I walked away and all of it still sits there, continuing on. No change. Some ups, some downs, but overall analysis, just the same shit.

Not sure if you should take solace or take rage in this truth, but I hope solace. I talk to many of you, but in my mind pops Julie Fleisher. Take a night off! Take a week off. Heck a month! It will all be the same. Spend your time on something more important. 

The second thing that stood out was all the talk of women. Go USA! I love the women’s soccer team. I love that they have “goals.” Goals is the right terminology right?! I know NOTHING about sports. Seriously. It’s sad. It’s not “points” right?!I love that they will challenge basic assumptions that have existed for as long as there have been sports. I support their goals/points. I choose women’s soccer as my new (and only) sport.

And I think watching soccer will go nicely with my Brooklyn craft beer. 

Three, the educational crisis in higher education. Of course, its there. Only 7 things listed and it makes the list. This time with the focus on Alaska. I have opinions on this…but that’s for another blog. 

But, the one that made my heart stop was the death of Eva Kor. Reading about her life. What a a life. Or what NOT a life. She lived her adolence in torture that even a horror movie couldn’t make up. She is one of the survivors of the twin experiments on Jews during the holocaust. I read that she “worked in real estate.” Such a normal phrase to such an abnormal existence. 

She “worked in real estate.” How is that even possible? 

She “worked in real estate.”

Anything is possible. 

She is strong. She is remarkable. Did you know that she even stood next to her torturer and gave him forgiveness? WHAT?! 

So lesson of today, you can do anything! Think of Eva. You can do anything. 

And it always could be worse… Seriously. It could be worse. You could be Eva or just my neighbors. To my left and right, it is worse. 

One is a family from Jamacia. Their child has leukemia. He has relapsed twice. It is clear they don’t have any money and have traveled here to save their son. I can’t even imagine what a daily struggle this must be. They teach me how to make mac n cheese edible for my son. Salt and pepper and some butter. Jacobs taste buds have changed with the chemo. Things don’t taste the same, but he still wants his comfort food. Turns out parents secretly “spike” everything. We all use the easy mac as we don’t have access to a stove. We all live the same tortured existence and we share. They teach me their tricks, their trade secrets.

I asked them what grade their son was in?

Stupid question. So much to learn! I sometimes forget that there is no time here. I go straight to my “old self,” straight to the “small talk” questions.  

The longest he has been in school is  2 months. He is 9 years old. I ask if he can read. They shake their heads no.

I’m going to teach your son to read. We exchange numbers. 

And then tonight I met Joshua. He is in college but has been battling a disease that creates tumors in his nerves for 21 years. Multiple surgeries and the anxiety from the disease is killer. It paralyzes him. His mom is a teacher and was born in Israel.

I met him at Bingo. He gave Jacob his prize. He was kind and so aware of the little kids. Wise beyond years. We talked about his anxiety. He had to drop a class and I helped alleviate that pain. At least I hope I did. I hope I helped Joshua tonight. He deserves a “little help from a friend” (thanks Nightwing friends for that one).

And the whole thing is so beautiful. I know that sounds ridiculous, but it is.  

So today I stop the pity party. Today I move past that. I’m over it. There are people who are in worse situations who then went off and worked in freaking REAL ESTATE. 

Steve? Do you hear that I’m done with all of that. Count me in. I’m all in. 

With you. 

And I’m going to do it all. I’m going to feel it all and do it all.

I cry only for beauty. I cry only for hope. I cry only for you.

I do cry for you. You, friends of Nightwing.I cry because I am so full. 

So today I go to work. That’s what I’m best at anyways. I will work from here. Today i joined your time. I even met someone at “6:00 on a Monday.”

It’s Monday. Well…that sucks. But its Monday and I know that tomorrow will be Tuesday, unless I missed some epic shit in the news these past weeks.

I’m going to try and join your time for work.

I work for Jacob and I work for all of these kids. I work for these parents who have spent every dime they have to save their children, traveling miles for a cure. I work for them. I work for their children’s future.  

And I am thankful. I am thankful for every day even in this hell. 

I BEAR WITNESS.

You hear me. I bear witness of these children. 

I SEE THEM. I FEEL THEM.

I will tell their stories.

I’m a maniac.

I truly am Jewish. When you have a bad day you order Chinese food. That’s just what you do.

I ordered for one

Steve is running. He never stops running. Doing this. Doing that. He’s doing it for us, but it’s also how he copes. He runs. So we don’t order together. We order by ourselves.

I ordered a feast. Three entrees and cold sesame noodles. I ate the whole thing. I ate until it hurt. I ate and ate. I wanted to fill up. It’s just been a lot. A lot of bad news. We are back in the hospital. He has an infection. This was “expected” but here we are again for the next 4-5 days. He’s doing well. He is always doing well. He is SO STRONG. SO STRONG. Doctors can’t get over him. He doesn’t complain and when you are down…he will tell YOU a joke. He is amazing.

But back to Chinese food. Back to food coma. The MSG kind.

I went to get the fortune cookies. Only one. Of course, my luck, only one!! Don’t they always throw in one for every entree? Is this some Brooklyn “green thing?”

I want to give it to Jacob, but Benno will flip. No need to start that battle up so I opened it for myself. They will never know. They are busy watching TV.

It was for me.

“If you have knowledge, let others light their candles by it.”

Yes, it was for me. 

I was debating publishing anything else. I actually was debating writing at all, but everything tells me not to. 

“If you have knowledge, let others light their candles by it.”

I will keep writing

 and I will publish. 

I have knowledge. You may want to hear it. You may NEED to hear it as you walk 5 steps behind me.

I have kept most of it to myself as it comes as “signs.” Sometimes LITERAL signs as if someone is trying to HIT me over the head with them. I guess someone up there thinks I’m pretty dense. The signs are in multiple modalities smell, tastes, visual, etc. The sign of a good teacher. Just checking over there for understanding? Do you need to see it another way? So I’m getting HIT in the head with signs. Some crazy coincidences that I can’t deny.

I guess you can never walk away from science. It’s everywhere. My life is my new science. I write down all observations. Study them. Read them back to myself over and over.  And guess what?! There is a pattern. There is one. There is one. And it’s beautiful and it is strong. And it has a purpose. And it has the happiest of endings. Jacob, my Jacob will be okay. He will give so much to this world. 

I hold back sharing as I worry about you, the other time people. The people on schedules. 

Steve tells me that “I’m not helping myself.” That my blog is “manic” and will hurt my business. He says this to be helpful. He says this to be kind. He says “understandably so. You are going through hell,” but I can’t listen to him. I can’t stand it and when he talks about this I can’t stand him. I can’t hear him say those things, because HE DOESN’T UNDERSTAND.

He lives in equations and systems and now “protocols” (that’s hospital speak for chemo treatment). He sadly sees manic as the enemy, the unknown, the fringe.

And he is right.

It is.

It is ALL of those things. 

But that’s where I stand and I don’t think I stand alone. And I am definitely NOT the first.

AND please tell me what is WRONG with Manic? 

What’s wrong with urgency? What’s wrong with direction? What’s wrong with feeling? AND what’s wrong with trying to do good with it?

I would call Thomas Edison manic. Hell, he’s a maniac! Look at what he devoted his life too. People laughed at him, people gave up on him, but he kept plugging away. When you read about him, people claim he felt a responsibility to the world. He wanted to fill the void left by others. Literally, the dark void. He made sacrifices after sacrifices and felt overwhelmed more often than not…but he brought light.

And he is just the beginning…

Einstein, Picasso, Van Gogh, JImmy Hendriks, I could go on and on.

Freaking Aristotle! I mean Da Vinci! I mean both!

They were maniacs for SURE. Da Vinci makes me look sane with all his writings and drawings.

And I can think of so many living breathing maniacs. Most of my friends are maniacs in their own ways. It comes in different forms, but yes, they are maniacs. 

And they sacrifice. 

So fuck you. Fuck you. 

I’m a fucking maniac. 

Ohhh…so scary. 

BOO!

And meet the newest breed. 

I dare any of you to find more of a maniac than a mother fighter for her child’s life?! I dare you. I’ve read about these women. TRY US.

JUST TRY US we will make you bleed. We will make you cry. We will. 

And I made a pact. I made a pact with God. 

I will continue to sacrifice. I will continue to make the world better. I will continue to do good. I will continue to fight and the list is just getting longer. Once I finish with higher education, I’m going after cancer. I’m going after not just the disease of neuroblastoma as I feel confident we can cure that, I’m going after the process. I’m going after how it rips families apart. I can’t fathom how others without our resources can possibly make it through. I’m unfundable because my kid has cancer, what happens to the expendable? The person whose job is to answer a phone or drive a truck?! What happens to these people? Why when they lose the health of a a child do they also face losing their LIVES?!

So FUCK YOU WORLD.

I am the MOST investable. 

You want someone who can run through walls? 

I can run through more than walls.

 I can run through time.

WATCH ME

Not investable. Thats me.

“Not investable.”

That’s me.

That’s the phrase I’ve heard about 12 times now.

“Not investable.” 

I’ve also learned another phrase “fiduciary responsibility”

People keep telling me these words. Over and over. They keep explaining them to me as they believe I don’t understand. At this point, they can even lay claim that I’m not “listening,” but I am. I’m listening. 

I just don’t accept it.

I just don’t. 

It can’t be. How can the world be this cruel? How can the world operate like this?

Maybe I’m in denial or maybe THEY don’t understand. They don’t understand my passion, my power.

I just can’t win. I am judged regardless. Even taking the time to write about my business during this time I’m judged.

BUT I am. I’m writing about it. I’m thinking about it. I am. It’s important

But again I can’t win and even if I plow ahead…I am now “not investable.” 

We fight. 

Steve and I fight. It’s usually about this. This is new territory for us. He is logic and I am passion and those two things can’t be mixed when the stakes are high and personal, my life’s work. They used to mix. Sweet and Salty, so delicious. But now we remind me of the Rio de Negro in the Amazon. I remember when I first saw it. These two independent powerful bodies of water coming together and not mixing. They run side by side, too “dense” to mix. Instead you see a divide. A line in the water. A physical divide in nature.

It looks anything but natural

I feel like this has to be a nightmare. That I am being punished. That everything that I knew right about the world, is someone wrong. It’s all flipped. 

And now, I’m being punished for having a child with cancer. And my team, innocent bystanders. People who live in your time are being punished?! Why is that?!

“I’m not investable” and it turns out possibly not right to invest me. It’s that other phrase, “fiduciary responsibility.”

“No one will bet on you. No one can”

I’ve even heard: “We don’t invest in entrepreneurs who just had children, I doubt anyone will invest in someone with a child with cancer.” 

I’ve been shown metrics on how big companies invest. A huge chunk Of their decision metric goes to the “person” the “get it done person.” I get it. It all boils down to people. Ideas are free, you bet on the person that can see it through.

But I have an incredible team I shout and I’m leading from afar, but they want me. “I’m the name.”

I still don’t understand.

Do you understand that isn’t the way it works in MY world? That it will never be me that makes MTG change the world? Do they understand the magic in education is NOT at the top, but actually at the VERY bottom? Any educational venture’s success will boil down to one thing: teachers. Teachers. Teachers. Teachers. The magicians. The people who make you realize that you have everything you will ever need. Teachers.

And I’m here. I’m here in any way I can.

I went back to my advisors. “Let’s find an angel investor that can just give me capital to keep my team chugging and give me time. Take me through Jacob’s surgery and into the immunotherapy phase. We can use that time to make it even stronger/ better. I’ve learned a few things during this plight. Things that I can use to improve our work.”

But, now I look weak. Desperate even. 

Again “ not investable.”

AHHHHHHHHHHHHHHHHHHHH

That word doesn’t even make sense to me.  How can someone be not investable?

I’m not from your business world so maybe that is why I’m having such a difficult time with your known “truths.” We have kids that struggle to read. We have kids whose brains are wired differently than yours. We have young adults who struggle to survive in the real world due to anxiety, etc., but does anyone say they are “ not investable?” I’m in the business of growth. I recognize that growth is not always linear, there are plateaus like when a child learns to read. I’ve seen the those plotted lines. Sometimes people just need time.

I need some time. Just a little time.

That’s not the same thing. I hear you business people smirking. She really doesn’t get it.

 Its apples and oranges.

Maybe that’s it. 

I’m an apple and the business world is an orange.

We will never understand each other. They will never understand how smart our solution is. They will never understand the need. I tell them about the GAP. The gap between schooling and the real world. How students are unprepared in both independent living and work-ready skills. How the old model doesn’t work in today’s economy and future. How this is the reason behind so much that’s wrong. They nod. It doesn’t take a rocket scientist to agree. I’m not making this shit up. The stats are out there. There isn’t a week that the NYTimes doesn’t publish something about the demise of higher education. Colleges are in trouble…they are closing. the signs are freaking everywhere. I’m not the only one with this idea, but I do believe, the only one with the solution. But wait…

I’m “not investable” (right now), because I have a child with cancer.

BUT I DON’T ACCEPT IT.

I DON’T ACCEPT YOU.

Wait…

Are you “investable?!”

Is there someone out there reading this that is BIG in education? Is there someone that can be “out front?!” Lead my team. However, I do CARE about my team. You have to take care of them and live up to my promises. But someone has to be investable. Be this “big name” that is so important. I don’t care about money. I don’t care at all. Take the business and run. JUST DO IT. Someone just DO THIS. I’ll give you the keys. I’ll be your guide. I will pick up the phone if you need me. You don’t. I have the team ready. And I’ll be there in a few months.

Stronger. A survivor.

So see add below

HELP WANTED:

Investable! That is all you need to be. An educational entrepreneur that is investable. Ideally a man.

My husband will be angry about that (the man part). He claims this has nothing to do with gender. That as a man with a child with cancer, he is “not investable” too, but you and I know that its more complicated than that. I need this to happen so I’m just calling it out, I’m being transparent.

REWRITE:

HELP WANTED: White male in his 40’s (with stay at home wife) with background in higher education.

Is that fucking investable?

Because according to your world, I’m not.

Bad Day

I have a problem. I have this blog but it lives in your time. Your time is a “ping” in your inbox. It is stamped. Even the time you read it is stamped.

It’s sealed. It’s read.

But its not like that.

It isn’t.

Its evolving for me. I keep editing. I keep going back. I keep growing and learning. Nothing is ever “done.” It can always be better. But its not about writing better, its about capturing it accurately for me and TRUST me I know the stakes are high.

I vacillate. I’m scared. I only write in the moment and now people pile on me. Will my last post put me “out” in the eyes of G-d?! Am I HURTING JACOB by my writing?! Is that possible?

At this point isn’t anything possible?!

I live in fear. Fear of going right instead of left.

You can’t tell me its all going to be okay, because it hasn’t been. The odds that I will be hit by a car are higher than yours.

And for what its worth, you judgers, I feel closer to G-d/ light/ it than ever before. I’m not “there there” as there are a LOT of questions I still have, but I’m getting closer.

And yet you judge. You always judge.

I write these blogs for me.

Seriously.

I’m my biggest follower. Heck I’m a fan.

I read them over and over. Probably each one at least 10 times a day, because it makes me feel in control.

I did that. That is over. I came to THAT understanding.

I read it to remember, because even when you find God/light/it, you doubt yourself. Everyday I have to fight to come to the understanding of yesterday.

I start all over.

So the blog reminds me.

I can start on page 10

Beyond confirmation of the known, I also get strength. I do from this stupid blog.

It brings life. It brings beauty. I know I’m not alone. I see the stats on the blogs and it makes me feel strong. It makes me feel like I have the world’s prayers on my side. It makes me think that you will help me, you will help Jacob. That the world is more than this moment.

So I just write. I don’t think. I’m not trying to hurt anyone. I’m just trying to find/express what is going on.

To find an OUT. To find a way FUCKING OUT.

So please don’t judge what you read. I’m doing the best I freaking can. Please know that I have never INTENDED to hurt anyone in my life.

Today has been a BAD DAY.

I can’t even begin to describe it and its still raging on, but here is a few of the moments…

  • I Feel terrible. Not sick, but I am not myself and I need to be 100% myself for Jacob. I’m off because I took some drug last night. I haven’t slept in weeks. I started getting paranoid that I will get sick. That I will get Jacob sick. So I took a drug. I am not responding well. I feel so anxious today I could jump out of my skin. I have a head ache. I tingle and I can’t do the “show” well. I’m trying though, but it is rough.
  • I’m going back on lexipro. This is very upsetting to me and defeating. I had to go on it for my job (that story for another time) and I worked hard to get off of it. I even left the job! But I’m going back on and its hell. It is not a fun ride up. But everyone says its a must. So I’m listening to the “experts.”
  • Steve and I yelled at each other. This is not the norm. We are both just so exhausted. I yelled at him to come in the room and then yelled at him when he didn’t come right away. He is trying. He is doing better than trying. He is doing everything. I know that. I just lose it seeing Jacob like this, but its not cool. We need each other more than ever.
  • Jacob is so sad, but still so Jacob. He just lays there. He doesn’t want to watch TV, just lay. Food doesn’t taste the same so it is ongoing battle to find something he will eat.
  • We lost an eye lash today. I found it right where the “third eye” should be. Started writing about that. To remind myself of the beauty and how it was a sign, but I don’t have time.
  • We have to give him shots now. He cries, but then gives you a limb to poke it in. Its pure parent and child torture.
  • My niece is in the hospital. She had an asthma attack. She will be fine but it was scary and she needs family. My sister in-law is out of town, so my mother in law has to go to Naomi now.
  • That means… Benno’s back. He was supposed to be with my mother-in-law in NJ having a normal life and driving his distraction toy they got him. Benno doesn’t do well with change and BOY is he letting us know.
  • Remember that phone call with the drug company? After hours of coordination, it all failed. The delivery was rejected and Steve had to run to the city and deal with that. Leaving me alone with Jacob and his pain. I had to give my child oxy. I had to give him a serious drug and I didn’t have my partner. It sucked.
  • The TV is broken. Steve is fixing now, but not a time for the TV to be broken.
  • And my business…this one is putting me over the top.
  • Due to various reasons Mind the Gap needs to find a new seed investor, but I can’t physically go do it. LET ME BE CLEAR: I need Mind the Gap to continue. The world needs Mind the Gap to continue. It can to do good AND good can be exchanged for favors with G-d. I NEED Mind the Gap to help millions. It is my best work ever. It is my heart and soul. It can change the world and I don’t have the ability to find new funding. I know money is money, but where it comes from matters to me. I want someone who cares. They will own equity. I need it to be with a good person, but who has the time?! NOT ME
  • And no one can freaking figure out how to deliver to this place?! I can’t get food and I was alone all day. I’ve yelled at about a zillion delivery guys. Shit. Just realized your going to send food! Of course you would. Because you are a good person and I would do that for you. Don’t do that!! You need to understand that we are living on a boat. We have ZERO room, especially with all the stuff Jacob needs now. And Jacob’s taste buds change daily. I need to order just what we need, but thank you.
  • Then to top it off, I’ve been told that “I’m doing damage” by someone I love and need. That I’m hurting people! If they only KNEW the pain and KNEW how hard I am trying to do just the opposite. If only they knew or took the time to figure it out. You see I don’t have TIME to explain it to you, it is on YOU to figure it out. Everyone else seems to have. All of you have. All of you have Friends of Nightwing. Thank you.

What sucks the most is that strangers get it better than Some people closest to you. The people that should get it.

Why do you think that is?

Is true understanding of an individual only seen from a distance?

Or is it that when you are so close to someone you see yourself in them and then it just becomes about you?

I’m not sure.

All I know is that write.

I just write.

And then I read

I chose strength. I chose to be one of the chosen people.

What about that Jewish thing?

I’m Jewish. I have a religion. I was born into one. I’ve always been proud to be Jewish, but organized religion is complicated for me.

My parents are “born again Jews.” That’s the only way I can explain it. They went from reform to modern Orthadox in a blink of an eye. From synagogue to “Shul.” And if you know my mom, she just expects you to hop on board too. Her thing has to be your thing. But over the years she has respected my reservations. It is less of a “thing” between us now.

I really have no issue with her becoming more religious if I saw happiness. I don’t mean to upset anyone. But I am a bystander. I bear witness. I see. I’m not going through cancer. I am only the witness.

But I feel.

Since my parents have become more religious, I’ve seen nothing but heartache for them. And the community is not my cup of tea. They all seem so self interested. They all want meetings. They need funding. They want. They want. They want all of my mom and my dad. They all feel like blood suckers. They sucked my parents dry. Too dry for me. They don’t have anything left to give, especially their time.

I miss my parents. I miss their old friends. I miss their old community. Maybe that’s normal. Maybe we just love our childhood experiences and change is seen as the enemy. 

I guess… I just can’t relate. 

My mother is in another time. I can’t understand her and I really can’t understand my dad who just shuffles along for the ride. 

Their life is the shul and it feels limited. Like Benno.

Out of balance like Benno.

On the fringe of the edges. Overdosed on religion/ anxiety. 

And I fear the fringe. I fear it. 

Look at what the fringes of religion has done?! It is the source of the pinnacle of achievements to the disasters of mankind.

Building pyramids and toppling buildings. 

Releasing comfort/prayer and poisonous gases.

Dancing in unison in festive garb and fighting alone with bombs as your inner wardrobe.

So many lives taken in the name of religion. It’s hard for me to just accept.

But I need to ritual. 

The first night in Brooklyn I sat with Steve and we looked out. It was quite the view. It was gorgeous. I couldn’t deny that. Beautiful.

Turns out even from hell, you get glimpses of heaven.

From our vantage point we see a world of lights reaching towards the unknown. Reaching for greatness. New York City. We see the Brooklyn bridge. It is breath-taking. I taught the Brooklyn bridge to first graders for a few years. I know its enginnering marvels and its sad ending. A man devoting his life to building a suspension bridge and dying just before it came to be. Oh how he would marvel that it is still standing 150 years later. In all its glory.

You can also see the statue of liberty.

Steve is at peace when we sit and look at the city.

Steve: “Isn’t it amazing. Think about all those years ago. All those people. Our ancestors. And look what they built (pointing to the skyline of New York). The Jews are strong incredible people. Strong people.”

And he is so right. 

Look at the Jews. Look at what they have done. Look what they have built and look what they have suffered.

If anyone is STRONG it’s the Jews.

I am Jewish. Steve is Jewish. AND Jacob is Jewish.

Jacob will live. Jacob will fight just like all of his ancestors. He can because he is Jewish.

And I swear on my life, this is not a joke, 5 hasidic Jews walked by the boat. Right then. Right then!!! Steve and I hopped off the flybridge in unison and ran to them on the dock. We have zero shame. You will soon see this yourself. I have made some deals with God…I will need your help. I have no shame. I will ask.

But back to the 5 hasidics walked into a bar. One was wearing a talis, one was wearing…sorry! I digress. I couldn’t help myself. It sounds like a bad joke, but seriously there they were. In the middle of the night. No one else in sight. Five Jews walking next to our boat.

“Wait! Wait! Wait!” I yelled. 

And they stopped. 

I asked them if they were going to pray. They were headed to the water and it was late at night and it looked like a minyan. 

They looked at me like I was an idiot. 

“Uh…No we were not.” 

What a stereotype huh? ! I just assumed they were going to pray. How much I have to learn. They had the whole Orthodox vibe on and I just assumed they must be going to pray, but in reality they were going to smoke a joint.

My kind of Jews.

I tell them that we are Jewish. Like it’s a secret club or something. And we tell these strangers our plight. We tell them about our Jacob. They asked for his Hebrew name and mine. In the Jewish religion you pray with “Yakov ben Channa.” Jacob (Yakov)  son of Abby (Channa). And they said they would pray every night for him. And I believe them. I hope over a joint. 

The Jews are strong. The Jews can beat anything in their path.

Jacob is Jewish.

He is one of the CHOSEN people. He is one of the stats. We Jews beat all odds. Heck, we are still here!

I chose to live on the fringe. I choose to walk to the edge. I chose the pinnacle of achievements, of marvels, of miracles. Maybe I’m on my parents time now. Maybe we can walk together.

I will take the strength from the Jews. That is what I’m doing now, I’m building my rituals. 

From Judaism, I choose strength. 

Rituals

Science ends and then you have ritual. 

That is what is left. The answer from within. An answer from taking control by finding control in something bigger. It’s an oxymoron. Give control to get control. 

I’m talking about religion I guess. Aren’t they a variety of rituals? A way of speaking to God, light, an all mighty being of some sort. The it. They may look different but aren’t they all really the same? Looking for the waves in the unplotable. 

So that’s where I stand now. 

Deep in ritual, but only for the way out, I can’t find the why. 

Finding the WHY has been a journey with no end and puts me in a state of anger, fear, and self pity. 

 I think finding the WHY will be my path for the rest of my life. Even when all this is done, I will still be half here, finding, looking, for meaning for answers. For the statistical anomaly. 

We had to be chosen. How else can it be? How else can it be.

There is one thing that is absolute. There is NOTHING that a five-year-old soul has done to deserve this. That is probably the only absolute I know. Jacob doesn’t deserve this, no child deserves this.

And Steve…how can Steve deserve this? What has he done?!

Is it me?

Maybe it was me.

I know everything I’ve done. I am me. I’ve listed them. I’ve listed the good and bad.

And I still come up blank. 

I’m a good person. I’m a good person. I have always done right. I have always cared with all my being. I’ve been lucky. I am one of the privileged. My life has never revolved around money so I had the ability to just do right. I never had to steal for my child, but I understand those who do. 

I’m a good person.

And I’ve learned more about myself than ever and I still stand by that. I’ve looked DEEP. REAL DEEP.

I did discover a talent that I never really understood until now. A talent that is my biggest burden. The heaviest burden for right now.

Nope! Wrong word.

Maybe it my heaviest responsibility…It’s like walking with 30 people on your back. 

I’ve been given this ability to FEEL things so deeply, through my pores, through my veins, feelings explode.

I feel it all. I feel it all.

I hear that song play in my head as I write it. You know the one by Feist. 

I always have been told that “I’m sensitive.” I’ve never been able to hide my feelings, which hasn’t always been a good thing. Especially at work. Child first. Ask anyone. I will always answer the same way. Ask anyone. What is the best interest of the child? That’s what we do. It’s truly a simple business plan.

But I never knew how extreme it is until now. I never knew that until I walked this path with others. I can see it from their perspective. Seriously. I can see it all from their perspective. 

I know this sounds insane. It is a bit insane. But so are those numbers? So are those stats.

It is insane.

And it’s a lot, but not all bad. This might sounds strange, but mostly good. I see such beauty. I see such strength.

I feel it all. I feel it all. Maybe that song will come on some time.

I  can see and FEEL how all the others feel.  I see Steve’s journey, I see my mother-in-law, I see people for who they are. I see their sacrifices for Jacob. I see my friends.

I see you. I really do. I see you.

I see everyone’s sacrifice for Jacob. Putting themselves last. Leaving their schedules in nicely colored blocks to join my time. I watch my mother-in-law sacrifice everything for my strength for her family. She barely eats but smiles and takes care of Benno. She has enough strength for all of us. She’s always there. My father-in-law who wakes up to get radiation (oh yeah that’s another factoid. My father-in-law has cancer), but can’t bear to miss a second without Jacob so hurries straight here. I watch all my family suffer and it KILLS me. It kills me for them. 

And it’s so beautiful. It hurts. 

So the WHY is a place I have to walk away for now. Because there is no FUCKING GOOD REASON. No good reason that people likes us have been chosen for this road. No good reason why all these good people should suffer.

I’m putting that aside for a bit because its a dangerous path and it doesn’t serve Jacob. I’m focusing on how to make it better because I need it to be better. I need Jacob to be better. He looks sick today. Just like the movies. He looks like that. Not moving much. “I don’t feel well.” He’s in pain and nothing tastes “right.”

I need to make Steve feel better. I need to make Mema feel better. I need to make myself feel better. 

I need to get through this.

I’m finding my rituals. 

I’m finding the way OUT.

Patterns

I like cards. I’m good at cards. My favorite opponent is my father. He’s good (very good) and he never lets me win. He taught me by not teaching me. Never a lesson on strategy. He liked winning. He just kept beating me for years until I could figure out how to win on my own. This was a gift. I know how to learn and due to this particular lesson understand how to hedge bets.

Cards are also so clear. 

You can count them. 

You can count on them.

That’s why science has always been my favorite subject. Its like cards.

I believe in science. I support science. I think of myself as a scientist in education. I have a degree in the science of education. I have always made “research-informed” decisions When deciding what would be the best word study program for Avenues, I didn’t go to their websites and look at the studies the manufacturers produce, we did our own study. We did science. We made choices from data. 

Data provides statistics and statistics hold meaning. They hold patterns.

I have always believed life is made of patterns.

Everything has a rhythm and it oscillates between the poles. It may swing, but it always swings back. It never stops swinging and that can feel scary/ chaotic in the moment, but if you keep looking at it,  you can see patterns. You may need to step back (WAY back), but there is a pattern there.

Right now I see one. Passing right by me. Girls wearing high waisted jean shorts and short belly showing T’s. People back in “mom jeans.” It all comes back. Even the 90’s fashion…sadly, it has returned and it will again. We may not be here for it, but it will return. It may look a bit different, maybe it’s some new tech material, but the idea, the concept, will be the same.

It’s everywhere. Patterns.

Music. It has this never-ending pattern between commercial and anti-commercial. In the 80’s it went from big hair and guitar solos, to the 90’s Kirk Cobain (the anti) hair. The I’m never going to brush my hair and wear very large orthopedic looking shoes masked as “battle shoes” (Doc Martins). And then it swung again. We had the big pop sensations, Back Street Boys, Britney. It just keeps swinging.

And yes my friends (deep breath) it will swing again politically. Look over the years (not just the last 10 years), look over 500 years. It swings. Nothing is permanent.

Life has patterns. It has predictability. Look at nature. Everything came from there right?

And if you plot it out. It will look like a beautiful wave. A wave of patterns. Some call this a bell curve.

So I believe in science. I believe in data collection.

But I’m not so sure now. 

I have data that can’t be plotted.

There are 800 cases a year of neuroblastoma diagnosed a year in the USA. Thre are 23.7 million children 5 years or younger in the USA.  That means. .00003376 children will get what Jacob has. But wait, there is another stat. 90% of children that get blastoma are younger than 5. Jacob is older than 5 and a half. He will be 6 in December. So the odds of Jacob getting this is .000003376. 

Some more numbers.

There are 228,000  people who will be diagnosed with lung cancer in a year. There are 327.2 million people in the USA. The odds of getting lung cancer are .000069682. Now Steve’s type of lung cancer is 1% of all lung cancers. Making the odds of getting Steve’s cancer .000000697.

And in one family we have had both. 

It is statistically impossible. 

It’s impossible. 

It can’t be plotted.

It doesn’t make a wave. 

There nothing to be learned and nothing to gain.

This is where my journey of the why began. I went to science. I went to find the pattern.

It ended in the end of science. The end of finding meaning in numbers. The end of ANSWERS that were googleable.

I will try and communicate all the thoughts on this journey and some have been beyond beautiful, like take your breath away beautiful. Some have been so low so so low. 

But first I need to tell you that I had to walk away from science. 

I had to walk into the unknown.

Time is relative

Time is relative. 

But Einstein got it wrong. It isn’t relative to time and space. It’s not that connection, it’s relative to people.

It’s where I am in time and where you are in yours. How we relate is when we are both in sync, in the same time and sometimes space (I guess Einstein was only half wrong).

My time is boundless. It has no beginning or no end. Hours can go for days and minutes can be in seconds. 

And I don’t know what your time is. One thing I’ve learned is no assumptions. You may be living in a different time too. It doesn’t have to be because of tragedy, you just may be living in a place people can’t relate.

Because its all relative.

This is new for me. I’ve never lived in this time that is unrelatable. My time was always arranged nicely in colored blocks on my calendar. I could even share my calendar with you. And it was packed. Every breathing moment scheduled. Time for this meeting, time that appointment, but now I don’t live in your time. It’s hard to relate and connect with you. I can only do it through this blog. I don’t speak to anyone. Including my parents. I only communicate here.

And I’m trying my hardest to keep it up when I can. This is the best part of my day. This is the time I relate, we connect.

But some things to know: When you ask me “when will be a good time to come?” I don’t even know how to reply. I’m not on your time. I have no idea. How can we pick a time when we don’t even have the same units of measurement.

And because of this I’m missing your time and here you are trying to come to mine. Believe me… I want to be able to know whats going on in your life. I want to be able to open instagram and scroll without feeling sick. I want to wish you a happy birthday.  I really do.

But time is relative and we are on different planes.

AND by the time I write you, I’m on the 100th thing that has happened since I’ve last written. I only write what I’m thinking about. The NOW moment and these moments are so limited. 30 minutes a day. I forget to share some of the highs (and yes some of the lows). So I apologize for that. Not sure how to solve that as I need you for every step.

But thanks for trying. you can add time travel to the Friends of Nightwing’s talents.

You are time travelers.

And they say that can’t be done.