Sneaky…

I see what you’ve been up to Friends of Nightwing. I see it and it delights me to the core. 

Just prior to this journey, I was talking to a teacher friend of mine. She was leaving the classroom, because it won’t allow her to be a mother. That giving all of yourself to other people’s children is cheating your own. I did see her point.  It’s just an impossible profession. You are spent by the end of the day. You’ve been dealing with kids all day and the you walk home to what? MORE KIDS. I get it. There is no more EXHAUSTING choice in work. There is no checking email, heck you don’t have a desk. There are no flexible hours to run out and get an errand down (even for your own child), sometimes you have to schedule when you can pee. This profession ain’t no joke. Its tough work.

But she was wrong. 

I now understand that.

The more you give, the more you receive. 

I’m not the only one raising my own children. I haven’t been cheating them (and trust me this thought has entered my mind), I’m enriching him. I’m giving them 1,000’s of mommies and daddies. We are raising our kids together. I got yours, and now I understand… you got MINE.

I have SO much support. I’m swimming in support. Please don’t go away. This is only mile 1.

And you have been sneaky… I’ve recently learned of the go fund me page (friendsofnightwing.weebly.com). I thank you for this. I thank you for helping this hospital that does miracles everyday to continue its work. I thank you for curing Jacob.

Your donations go so much farther than Jacob. You are touching many lives. Many lives that feel alone. Many families that travel across the globe to be here and have no support. You are touching them too. Thank you.  

I am surrounded by children fighting for their lives. It’s really hard to make sense of. Why?!

I watch the other mothers shuffle around the floor. None of us speak, we nod at each other. There is no stopping and talking. We are all focused on what is right in front of us. Carrying the IV cords, talking to doctors and entertaining our children at the same time. None of us speak. I know none of their names. We all have 2 full time jobs.

I thought it would be otherwise and some blogs I read suggest otherwise. That there would be this big support club and we hold hands through this together. Sing kumbaya, but that’s just not the case. I’m not even sure how that could be the case. That just sounds impossible. 

We all are so busy. When I see all the other children (ages 8 months to 16 years) fighting this fight, all I can think about is statistics. I’ve always been a research informed educator. Before that was a thing even. I like to learn. I like numbers.

 We all want to be THE ones. We all want the stats on our side. We all only have enough energy and prayer for the OUR one.

This kills me. This is hard for me. I want to talk to help them all, but I can’t. I can only do my one.

But that’s where you came. You knew that didn’t you….

Sneaky.

Love you. Love each and everyone on of you.

I plan parties, even the last one

I think about my funeral a lot. I know that sounds morbid, but it’s actually one of the my go to thoughts to get me through the days. At my funeral I see Benno AND JACOB. They both speak. Benno is as eloquent as can be. He seems calm/ at ease. Maybe he finally channeled that anxiety or is as high as a kite, it’s nice to see either way. Jacob is oddly a mess (my strong one) but he speaks too. His eye lashes on full display as they glisten with tears.

I am sleeping and at rest.

It feels joyful, at least from my perspective. I see people crying, but I’m so happy. Look there is Katie, Carly, Marni, etc. All of the incredible people I’ve picked up along the way! All in one room! It’s pretty incredible. Most haven’t met. They are just going to love each other.

And it is planned to perfection!

Of course it is.  I’ve planned out every second of it. I don’t burden my family and friends with what I would want. I’m good at this. Let me do this.

I’m good at throwing parties. This is MY thing. Its hereditary. It’s in my genes. It comes from my mom. And unlike most people who throw a good party, I don’t throw money at a good party, I throw meaning. Everything has meaning. You may not know it, but everything does. Every little detail has meaning. It’s the way I show my love to you, my friends, my Friends of Nightwing.

New Years is the best party I throw. It’s MY favorite holiday. It is the only holiday (especially for us Jews) that doesn’t require praying, guilt, or a food coma. It is a DO OVER holiday. It is a day of looking forward, not back. It brings in all of the world, all of its colors and religions. It is the only universal holiday I know of.

It’s undeniably the best.

The real party work begins every December 26th. The day after Christmas. I hit every big box store: Target, Walmart, Home Depot, you name it. All of them sit nicely in a row for me in Riverhead. I hop from each with a bee line straight to the clearance aisle. It’s a tinsel extravaganza! It’s all basically free. I fill the cart with twinkle lights, fake snow, Christmas ornaments. and of course, tinsel. 

I should mention that we are Jewish. However, lately I pray to all, God, light, rocks.  Put in front of me and I’ll bow to it.

All Jews have Christmas envy. How can you not? Mariah Carey has yet to release her Hanukkah album. The Christmas lights! I love the lights! We go light “critiquing” every year. Benno was a born critic  so it is only fitting that we drive around the streets so Benno can critique their Christmas displays. “They should have really put the lights on both sides of the house. It would look better if it was symmetrical.”

When I get home with my santa’s bundle, I throw it all over the floor. I build. I make. I create table centerpieces. I think they are gorgeous. I’m sure they look like a home made craft, but I made them for you, my friends of Nightwing, so they are gorgeous (and definitely one of a kind). 

I then spend HOURS on table arrangements and the number one rule of our party, NO ONE knows everyone. That includes Steve and me. Every year we meet new people at our New Year’s table. We welcome people into our home and life. We don’t have to plan this. We don’t have to pick up a stranger on the street, it always just happens (sometimes just an hour before!). “My sister is in town, is it okay if I bring her?” “My friend Sally just had a baby and is living in the hamptons, I want to get her out of the house, can I invite her?” The answer is always yes. It will always be yes, so you can stop asking.

Hell, you all are invited! 

And it’s fun sitting down for hours and thinking about all your friends and loved ones. Thinking about who they are and what they like. Then arranging them in unique combinations so that everyone can enter the new year with a new connection, a new friend. 

And then I write about each of you. I write funny things that hopefully make you laugh. I create bios and I send them to all of you so you can get to know each other prior. One thing I’ve learned in my career is that there are all types of learners and people. Some people, like me, can walk into a room and not know a soul and feel perfectly at home, but others…that is torture. So I write this for you all. No one walks in without feeling totally prepared to meet some awesome people. We only know awesome people. 

And the entertainment. It’s always something different, and yes, has MEANING. After Trump got elected, I wanted the entire New years of 2018 to be about positivity. We’ve got to change the direction of the world. I put condoms of everyone’s pillow that said FUCK 2017. 

I guess at that time, that felt like the worse thing that could happen, losing an election.

The entertainment that year was an artist friend of mine and now ours. He would bring in the positivity with his message.

I met Joe in the park over 12 years ago. You have probably met Joe in the park too. He goes to public parks around NYC and makes sand art. He is usually in some floppy hat and has a jar for money collections. He spends 5-8 hours on his knees creating art with no easel, just the dirty streets of NYC. He makes beautiful work. And you know what he does after he is done? He just sweeps it up.

Just sweeps it up. 

The first time I met him I was alone. It was dusk in Washington Square park and I was coming home from work. I must have come when he just finished. I saw him circle around it and then grab a broom. What is he doing?!!!

 He just swept it up.  

I think about that a lot now. Working all that time. Creating all that beauty and then without a thought, sweeping it up. It didn’t bother him one bit. 

Things don’t really matter. It’s the experience that does. The creation part. The ride. 

Here is the sand art Joe made for New Year’s in hyper speed (it took 5 hours) and below is a picture of the children playing with it. Destroying it. Jumping in it, and ultimately, making sand piles.

Joe told me that whenever he watches children do this, they always do the same thing. They run, they destroy and then they all get to work. Working together to make piles. It happens every time. Every time and he has done this hundreds of times. That is a pretty wild statistic (I love statistics). But doesn’t it just tell you the innate nature of humans. We build civilizations, in the end every society has created community.

My second favorite part was watching the parents. I recall all the adults looking in horror for a bit. How can we let our kids destroy this art? Is this really okay?

But the kids, were all in. 

They get it. 

It was the best. It was the best. I love these memories.

But back to my funeral, my best and last party.

I felt best to document it as I won’t be able to execute it. I have more notes, but I’ll send those to just a few. Don’t want to burden all with these notes, but here are the general guidelines.

But in general, this is what I want:

  1. I want everyone to sit next to someone they DON’T know. I know that may feel hard /uncomfortable, but it’s important to me. I’ve collected so many incredible people, I wish they knew each other better.
  2. Music. I want to hear both my theme songs, one at the beginning and one at the end. Surprise me!
  3. Carbs. I want the shiva to be full of carbs and I want you bitches to EAT them. 
  4. No flowers. What a waste. There hasn’t been a flower/plant I haven’t killed. Not into them. No need to decorate, but if you feel the need, write! It helps. Write a story/note. Draw a picture. Whatever. Then give everyone a piece of scotch tape when they enter. Done! Decorated.
  5. I would like Jenna Arnold to say something spiritual. Dana Fabrikant to say something profound about life and Lauren Hanin to talk about how ridiculous I am. However, I have a feeling that will each take a bit of Lauren’s. I’ve seen it play out in my mind. It’s not a feeling. I know. Normally, I would write out some ideas for them. Don’t think I won’t. I did that for Steve’s friends for his 40th, I gave everyone speaking notes! I also only gave them these notes 1 hour before the party. I don’t believe in planned speeches. From the heart. As Steve jokes as he has seen me give speech after speech over the years for work, “Levin’s don’t do notes.” I always speak from the heart. But these three ladies are incredible speakers. They are my sisters. Public speaking runs in the fam.
  6. And I want this said: “Life dealt her a hard hand, but it also gave her so much happiness too.” I don’t want my funeral to be a relapse of the all the pain. I know it will inevitably come up, but promise for every negative, there will be a positive. Pinky promise.

I know you want to know if it will be religious. I’m unclear about that part. I’m having a hard time with religion right now. Writing a lot about it, but just so unclear, confused, and frustrated. My writing doesn’t even make sense. It’s a bit hard when you are surrounded by children with cancer. Its a bit hard when you want a miracle. Just cure him!

Nothing makes a lot of sense. Luckily, I also know I have a lot of time until this happens (I’m going to live a long life) so I have the opportunity to make edits. Nothing has been able to kill me yet and damn have I had some rough rides, even before cancer entered my life. I also have two grandmothers both 99 years old. One is still dating and dancing:) I’ve got time.

This is a google doc that I copy into WordPress. I can edit.

But only one thing is in stone. Benno and Jacob.

So refreshingly it. So five year old it. So normal it.

Today we sailed. We sailed!

I was nervous, but while pushing off the dock, the dock hand, looked me dead in the eyes and said  “Everything changes at sea. Cleansing. Just like the waves lapse. It’s going to be good.”

It felt like confirmation to me. I’m always looking for confirmation these days. Even when leaving the hospital for my daily walk. Should I go left or right? I am sometimes paralyzed with this BIG decision as if I make the wrong decision, I could hurt Jacob. One path versus another. 

I look for birds. I follow the birds. Nightwing’s symbol is a bird.

And today we saw birds, but one seemed to follow us. 

We sailed away with Nightwing on our stern. 

All of us together as a family. All of us in our usual seats. Jacob behind me. Steve driving and me next to Benno to deal with his anxiety. Everyone played their “normal” role. We sailed listening to music on shuffle and a Beatles song came on. Jacob likes this one too. “Hey Jude.” At the nahhnahhh nanana nah nah part, I screamed so loud. Not outloud as that would scare Benno, but I screamed it in my head and opened my mouth wide like I was. It felt so good.

Nothing but us and the ocean. Nahhh Nahh Nahh Nanananahhhh!

I squeezed Steve’s hand and I felt the squeeze back.

I loved seeing Steve sail. He just had one job to do right then. Sail that boat. I felt so happy for him as his usual job is 15 things at once. Between his job, helping me with my job, and his number one job, Jacob, this man does not stop moving (and lately eating!). 

Even at night Steve has jobs. He sets a timer and every few hours puts on his night googles and sneaks into Jacob’s bed to take his vitals without waking him up. We don’t have to do this that often, but of course, safety Steve is on it. And of course he has night googles so he never needs to bother Jacob. Just another one of his gadgets.

I’ve been telling Jacob stories. I spend my days trying to fill his brain with interesting factoids. Trying to make the most of his sedatary existence right now. But, recently, I’ve been trying to fill him with stories of strength. 

He needs it. We have a long road ahead. If this is a marathon we are at mile 1 and I’m exhausted. Steve is exhausted. I seriously can’t imagine taking one more step. I need Jacob to be strong.I told them how unique he is. 

I told him the ultimate secret.

He and Benno are the only ones to have BOTH Brody and Levin genes in the world. The previous day I explained to him about genetic code so he peaked up with interest. I told him that this Levin/Brody is the most powerful combination in the world. No one has had it before. It can do wonders.

It can even preform miracles.

I told him from the Brody he side he gets the ability to solve any problem by just thinking. Whenever in trouble, he will find a way out. He can even help others find their way out. The Brody genes will always make you safe. In addition, you have the Levin genes. We can fight any infection and can imagine anything. We can create and lead. You can make the world a better place. You can envision what something should be and create it. 

You can solve and create. Its never been done. You have never been done. 

He nods. He gets silent. We turn off the lights and I start wondering if I’m scaring him. Maybe I’m scaring him. Why is mom telling me these stories?! How sick am I?! I threw up before….maybe something is wrong? I have tubes sticking out of me and my mom keeps checking them and she never shuts up!

30 minutes go by…I think he is sleeping. I’m just staring at the ceiling.

Jacob: “Mom can I ask you something?”

Me: I jump up! “Of course.”

Jacob: “We need to turn on the lights for this.”

I swear my heart was beating out of my chest. I was so scared of the question he was going to ask. 

Jacob: “Why is Julietta spelled with a “j” when it sounds like hullietta?

That was it. 

That’s what he wanted to ask. 

We had a discussion about the silent “j” in Spanish, but that was it. So refreshingly it. So five year old it. So normal it. 

And guess what I did? I slept (for like 5 hours, most in weeks!)

And we are now living Brooklyn and the stereotype is real, so many craft beers. Seriously an entire grocery aisle devoted to craft beers. I’m going to try them all tonight. I’m going to get drunk. Yes I am. Oh yes I am. 

I’m a hipster now

I’m moving to Brooklyn. I think I always wanted to be able to say that (not actually do it though!). I’m a hipster now. I may even start drinking craft beers. Isn’t that what you do in Brooklyn?

I’m moving to Brooklyn WITH Jacob. We are going to live on the boat in Brooklyn the closest marina to the hospital. 

We can’t go home. 

Because in the real world, not the “nothing is real world,” we were supposed to be in Montauk while our apartment went under renovations. We are supposed to be playing in the sand and fishing. We were supposed to be living.

While a cold is dangerous for Jacob right now, fungus is poison and when doing construction there is a possibility of fungus/mold could be in the air. We aren’t going home.

But I’m secretly happy about that. I need to escape. 

Maybe we can sail away again. 

Maybe I can sleep. 

Maybe I can see Steve and believe that he is real.

I’m so hopeful. 

The sea solved it last time, maybe again. 

It will wash away the cancer, just like the waves lapse. It will cleanse Jacob.

I also have the BEST news!

The NYC 4th of July fireworks are literally RIGHT next to us. Being fired from a barge only yards away. We will have the best seat in the house. Jacob is going to have the best 4th of July ever. The fireworks are coming to him. He doesn’t need to move. The show is right in his bedroom.

The world is coming to him just like you. 

You came for him.

Thank you.

I have two blogs

I don’t write much about Steve. Maybe you’ve noticed. You may find that odd if you know us.

That is because Steve doesn’t exist for me. We don’t see each other and when we do, I can’t.

You see…

I write and he reads. 

He reads everything. He knows every clinical trial, he knows every drugs interaction with the other drugs. He is seven steps ahead of any possible disaster. He’s doing “that” stuff.

“That” is actually how he moves all through life, seven steps ahead of disaster. This time the stakes are high so he is in hyper drive.

A bit about Steve. Oh where to begin! So many good examples of what “Steve Brody” is like.

I’ll give one, but there are many!

In our basement, we have enough water to last 10 years. You may say that isn’t super impressive (especially those who live in the burbs), but do you know that your Poland spring bottle and all water bottles bought at a grocery store expire? Or are not good after a while for reason? Well Steve does. 

Of course, he does.

We some have some “science water” stocked in our apartment in sealed cans; we have food for a couple of months; we have medicine; we have defibrillators, and during that whole North Korea scare (although did that really ever end?) Steve figured how to make our basement into a fallout shelter. 

I kid you not. And that is just the tip of the iceberg. I can hear my friends laughing right now reading this. I’m sure they can opine. Actually, do that! Comment. I would love to hear your stories. They make me laugh.

Steve is well…one of a kind. 

He’s my kind.

Nope! He’s every kind. There is literally nothing not to like. He does everything. He knows everything and he is a good person. Funny too. He has zero faults. He is perfection.

But I write and he reads

I’m here and he’s there

We just don’t see each other much.

However…

When I see him, I am paralyzed. It hurts so much. It’s hard to be near him, but it’s so good at the same time. It is like this crazy cocktail. Having a strawberry daiquiri laced with arsenic. Being in paradise and also hell.

I know that he is here.

I am aware that his physical atoms are here. I see him. I also know I’m talking to him. I know all of these things. I know I’m not crazy.

But…Maybe I am.

I am living this entire journey from TWO story lines and I CAN’T STOP.

I really want to stop.

I really want to.

I really do, but it is just a movie playing on a loop.

Every thirty seconds or so of every day, I literally think I’m doing this alone. And by no means do I mean absolutely alone. I have my family and my friends, but Steve is not there. He is not there. It is my reality. I walk alone. I “mom show” alone.

Oddly I can talk to him on the phone which is usually just a logistical talk about next steps, but when he shows up…

I remember he is here. It hits me. I realize that he is here! AND he has done SO much for Jacob and our family. He has more sweatpants for me. He has seven new ideas on how to help Jacob. He is dealing with everyone and everything. All I do is entertain. He has taken care of our family. He has gone into battle every day for us. He knows this cancer inside and out. He’s spoken to every researcher in the field. Hell, he is a doctor!

He has tasked list the shit out of this. 

And I’m so thankful that it rocks me to the core. Literally core. I can’t stop crying. Thank you. Thank you. Light, God, energy. Thank you.

because he almost wasn’t here. 

How would I have done this? How would I survive? How would I take care of Jacob? How would I take care of Benno?

And I cry. My heart breaks, because I remember it all of it over again. I remember. 

Actually that doesn’t describe it. I’m experiencing it. 

No, that’s not it either.

I’m DOING it. Its like I’m going through Steve’s cancer, but REALLY doing it this time. I was lucky that I didn’t have to do it when it was happening.  I was just Steve’s personal assistant last time. I ran the errands and got him his food.

With Steve’s cancer it was GO GO GO. And Steve led it. He lead his own treatment. Hell, he led his diagnosis. Steve saved himself. 

I will digress to share Steve’s cancer story as it just is another example of Steve.

Steve decided to get a x-ray for a cough. The Dr. (and his wife) said this is a cold. Steve never gets sick (of course he doesn’t!), but he still wanted it. Steve wants everything. Steve likes things. He likes owning gadgets (only the best!). He needs stuff in all its forms, physical and digital. He breathes data. His “food” is information. Its how he computes. 

So he got a script for an X-ray. Two days prior the cough went away. Ha! He did have a cold. I told him not to go. Unnecessary radiation. But he went. He likes gadgets. He likes information.

This gadget said: lung cancer. Stage 3 or 4, we got both diagnosis, but it didn’t matter, it was BIG.

But it was quick. In 2 weeks it was over. They cut they sucker out of him. He recovered at Superman speed. And we bought a boat. And fuck we bought a boat! Lot of work to do. I got a boaters license and Steve well…read. He learned how to be a captain, an engineer, a freaking bad ass man of the sea. And yes…he bought gadgets. He was BUSY!

And we sailed away. 

Literally sailed away.

Sailed from the memory

Sailed from the past

We adventured! My dream and we did it with a floating home. Benno will always have a home base for his anxiety. We built a dream that we all could love. And we loved it! 

I never really thought about him ever getting sick again nor cried about it.  Steve never spoke about it. We spoke about it when asked, but it was a positive story. We’re so lucky!

That was in the past. We were living in the NOW.

But now I’m feeling it. NOW! Fucking NOW!

Every time I see him, I remember almost losing him.

Its awful. So awful. 

And he starts talking to me. Of course he does I’m right there and he has something to say. It’s always helpful, nice, or just logistical, but I can’t take it. It makes it so much worse because there he is talking to me, he’s alive and I see all the things he did today and I feel so thankful, but yet I grieve. I cry my eyes out. How can I live without you? 

I seriously can’t explain it well. I’m trying.

But this sucks. I LOVE my husband and I want to be with him and he NEEDS me. He needs me. He needs me. I need him too.

So tonight (I got another “night off”. This time my Jacob wanted my mom), I vowed to do better. I came home and sat outside in our courtyard and listened to music (on shuffle). I felt strong. I would be strong.

I grounded myself in reality. I get to go home to my husband. Hes here

But then I saw his now bald head and how handsome he looks, I did it again. Lost it. 

How could I do that to Steve?!!! He has so much on his plate and now a wife he can’t console. Now a wife that can’t explain to him why she’s crying. Its not his fault.

He’s there for all of us and I want to hold him, but it’s hard to be near him. It’s hard to go back there.

I can’t imagine his perspective. He just did this fight! How must he be feeling! He already does everything. He needs his wife. He needs his energy. He needs his power cord and WE need him to have energy, he needs to save Jacob.

I’m fighting two cancers. 

One real and one imaginary. 

I live in two worlds. 

Two storylines. 

Night “off”

Jacob wanted Mema to sleep with him. That’s Steve’s mom. Whole blog on that…just not sure she would want me to publish, but basically I’ve had a “night off,” I wasn’t sleeping over. Everyone was encouraging me to do this and seemed to be the right thing for Benno. I could put Benno to sleep. He hasn’t seen much of me.

So what did I do on my night “off?”

I cried and cried and cried. I didn’t stop. All the way to morning. I didn’t sleep.

Its the first time I’ve “seen” Steve in 13 days. I mean the first time we have been alone and not running in opposite directions. That’s not normal for us.  We do everything together. Literally everything. Steve doesn’t have “guy” friends. He doesn’t go off and golf with the guys or go see a game with “the boys.” We don’t have girlfriends and guy friends, we only have OUR friends. We’re a packaged deal. It’s a two for one. 

We don’t function without each other. And I’m not trying to be romantic. I mean in a mechanical way, like a machine. He’s the engine and I’m the energy source. He ain’t no ordinary machine. He is the Watson of Watsons. He is AI enabled, he learns and updates himself. He is always the latest and greatest, maybe even a step ahead of AI. However, he only works on power. He needs to be plugged in, I’m on the other side of that cord. I need him charged.

For the past 10 years, Steve and I have spent every night doing the same thing. Starting at 8:30PM with a wine spritzer for me and a vodka tonic for him, we hang. This is our time and we do it EVERY night. Some nights it may start later if we have dinner plans, but we don’t sleep without this ritual, even if it has to start at midnight. We sit and talk about our day. I help him think through his work and he does the same for me. We brainstorm. We rift. We laugh. We plan. We plot. This is my favorite part of the day. The night. Nights with Steve.

So we had a night.

We attempted to be normal. He made me my drink and we sat outside and he started talking. 

And I just cried. I just cried. I just cried. 

I got a few words in when I could. I did. I wanted to be there with Steve. Don’t get me wrong. It has been all that I’ve wanted. It’s always all that I want. But I just cried. And felt like my heart was being ripped out of my chest.

I know why you think I’m crying, but it has nothing to do with Jacob. Wait! No that’s what I’m trying to say.

It has everything to do with Jacob.

but it’s more. It’s so much more…

Strawberry Fields

Strawberry fields. That is Jacob’s favorite song.

 I never knew that before. It turns out I didn’t know a lot before. I should know these things. I never thought before to ask. 

You really get to know someone when you live in 150 square feet 24/7. I ask him everything. I want to know every little nuance of him. And I do. 

I’m a big fan of the Beatles, but this choice is not from me.  I asked him how we knows that song? “The teachers play the Beatles at rest time.” I like all the songs, but Strawberry Fields is my favorite. 

This morning was his scan. “Here we go again!” He chirps and he slaps his head like a good Jewish boy saying “oy!”

In the waiting area for the MRI, I asked him if I could play it. He nodded enthusiastically and this dreamy look came over him. He just listened. I just listened. 

Let me take you down

‘Cause I’m going to Strawberry Fields

Nothing is real

And nothing to get hung about

Strawberry Fields forever

I don’t know who needed that song more. Him or me. I especially like the part “Nothing is real.” We plan to add strawberry picking to our vision board. We’ve got to see these fields! 

It was time. He climbs onto the machine and begins to explain in every detail how this machine is different than NYU’s. The doctors hang on his every word. Stop their prepping. Listen to his feedback. They can’t get over him. He comments on the size of the machine, it’s color, the gown color, the lighting in the room, etc. He remembers every little thing. 

He remembers every little thing. He will remember this.

He gives them 4.5 stars. When asked why not 5 stars? “You made me wear socks. I hate socks!” And then he jumped up and put his head in the tube. He didn’t cry. He didn’t ask any questions and again I was ushered through the double doors. 

I’m having a bad day. I had a hell of a night (another blog…not sure if I will publish. I write a lot I don’t publish). But, I haven’t slept and haven’t stopped crying. 

So I need to thank YOU, Friends of Nightwing for today, because I was at my lowest low last night and this morning. I could hardly walk. And I needed to be at my HIGHEST HIGH for his test.

WE JUST got the scans back and they are FINE.

Cancer has not spread to his brain tissue! 

THANK YOU 

THANK YOU

THANK YOU

AND IT GETS BETTER!!!

your prayers must have been so strong that they think Jacob can go home and continue treatment as an outpatient. We will be back and forth, but Jacob can see the sun. He can breathe the air.

He will be able to enjoy the 4th of July. The 4th of July like his daddy is his favorite holiday. He will be at his sickest point in the chemo cycle that day, but we are going to PARTY. PARTY all around him! Jacob has already started making the decorations. We’re ready. 

I can’t wait to look up at the sky with him. I can’t wait to see the sky explode. Burn baby burn.

Nothing is real. And Nothing to get hung about.

Strawberry Fields Forever.

Back to our usual scheduled programming: The Benno Show

There is another child. His name is Benjamin to some, but Benno to many. 

Everyone knows Benno. He has a magic and a charisma that captures every person in the room. He is eight but acts like an aging 70 year old, complaining about his hips and telling restaurants that its “a little too loud in here.” For his fifth birthday he asked for a massage. Like his dad he treasures the finer things in life.

Everyone always asks me how Benno is. Everyone is obsessed with him. He says pretty ridiculous things like “I thank you kind sir for your thoughts, but I’ll pass and counter with this idea.” These are things he will say to you in a conversation when asking him if he wants a bagel.

Everyone remembers Benno’s name. Often people are fuzzy on Jacobs.

However, just as Benno can brighten a room, he can also turn it dark, pitch dark.

He is hard. He is VERY hard child.

 I feel qualified to make that statement. I’ve worked with 1,000’s of children, there are harder ones than others, but Benno falls into that top 1% category called impossible.

If you say right, he says left, just to say it. Just to…drive/make us crazy? Hear his own voice? Win an argument? Always an argument.

Technically he suffers from a generalized anxiety disorder (an extreme one). He just came out of the womb like that. Looking back at home videos of his first years I can now see the fear in his eyes looking at the world. Not being able to speak yet, us new parents, inferred what his wide eyes and big reactions meant. They were just plain adorable. How funny he is. He had some good party tricks to show off to friends.

Us: “Look at my child take his legs and bend them up to his face. He is a human pretzel!”

Inner thoughts of Benno: “Why are they placing me above these BLADES of grass?!”

Us: “Look at how my child knows to reach for the edge of the pool. He’s so brilliant.”

Inner thoughts of Benno:  “HOLY FUCK I’M GOING TO DIE.” 

But, luckily, or not luckily (depending on how you see it) he spoke EARLY. VERY EARLY. So early that I lied about his age in mommy and me class registration. I put him with older kids, so I wouldn’t get a zillion questions from other moms of his peers. While they were always kind and fascinated by him, in mom talk the question is really, “why is my child not doing what your child is doing?”

You see that’s what he do…we just benchmark. Happiness, sadness, smart, dumb. Please know mom reading, I’m not calling you out. Its just reality. ALL the parents, even the best ones (and I’ve seen every shape and size) just want to know one thing, how is Jimmy doing compared to Sam. They will glaze over as you talk about Jimmy’s growth, pretending to see the child’s work on the table, but all they are doing is looking at the others. We should all work on that, but that’s another conversation.

So he talked and he never shut up.

Never.

I recall when he was just over a year locking myself in my bathroom. For over an hour as he called for the same thing over and over. The same exact word. Over an hour! People assume because I’m in education and a teacher that means I must be an incredible mother. Let me be clear, they are NOT the same thing. Teaching came so easily to me that it was like breathing air, but mothering sometimes suffocates me, I struggle for breath.

Now leaving a very young child unattended as you bang your head against a wall is not good parenting by any means. In my former position, if someone told me this story, I would by law need to report to you to child services. But I did it. I left my 1 year old alone for over an hour and I was not worried. Not for one second.

If Benno was left in a room of knives, he would chisel a spoon. Safety is his middle name. He sees the world not through wonder, but danger. He didn’t try to crawl near the stairs, we never HAD to put covers over outlets (although Steve of course did). He would only venture into an activity after witnessing others do it 100’s of time and coming back in one piece.

This takes intelligence. You need to know to be scared. He is crazy intelligent. He has been tested many times and I’ve read 100’s of neuropsy test results in my career, everyone thinks they have a genius. I actually have one. And I’m not bragging. NO ONE wants a genius. This an educator speaking. You just want balance. Success is in the balance in life. The edges are where you spend life trying not to fall.

Benno has it harder in life because of his awareness. Some things even after multiple exposures are still an issue. 

Loud noises (or actually any new noice). Danger!

Elevators. Danger! 

Trains. Danger!

Food. DANGER!!

His life is limited, and therefore, our lives are limited too, including Jacob’s.

We can only go to certain restaurants (2). We can’t go to birthday parties and mingle with other parents. Its hard to be part of communities. We can’t go to the Freedom tower, Jacob’s dream, as Benno is afraid of heights, and Jacob doesn’t want to go anywhere without Benno.

Jacob adores Benno. Of course he does, he’s Batman.

Until 2 weeks ago, we all, including Jacob lived in our usual scheduled programming, The Benno Show! Our lives revolved around Benno.

And I’m angry. I said it. I said it. Bad mom. I’m pissed as hell at him. To be fair I’ve always struggled with Benno, but now I’m SO mad at him. Mad at how he has limited things for Jacob. Mad at how hard he is making this when it is already hell.

Jacob spent yesterday morning having his dressing around his tubes changed. He spent his morning wearing a mask. He spent his morning crying in pain and throughout the entire hour of agony my phone didn’t STOP. It’s Benno. He’s screaming about going to camp. “I’m scared.” Benno screams. “I hate you.” “I’ve ruined his life.” My greatest moment of anger was from the line below:

“I can’t go back to school. On the first day they will ask what we did this summer and I’m not going to Nantucket. I have nothing to say”

WHAT?! You can’t go to school because of Nantucket. It took every ounce of me not to kill him. None of us have ever been to Nantucket. EVER. Not me, Steve, Jacob, nor Benno. He isn’t missing some big family tradition. He’s just a dickhead. A spoiled one too. Yes I’m calling my son a dickhead.

And we are trying to make him happy. Trying to remember that he is so anxious in life and changing things on him is scary. Steve has spent the entire week working with the camp to allow his nanny to go with him all day. He has 1:1 support and STILL he won’t go. He went for one hour and left. He’s “scared.”

I MEAN COME ON! Its fucking camp. Don’t participate, I don’t care.

I try not to speak to him. I don’t pick up his calls. I don’t listen to his voice texts. If I do I would be mean and mad. I would tell him to “buck up.” I would say I’m sending him to boarding school, literally Benno’s biggest fear. Benno has never slept out of the house nor does he plan to. He said he’ll “consider it in my 20’s.”

But I also miss him at the same time. We all need Benno. As I said he brightens the room and he can even do this in the hospital. When he is here it all changes.

When Benno is here, Jacob smiles, Jacob eats, Jacob laughs, AND Jacob walks (something he normally refuses to do). He made signs for Jacob’s wagon “VIP COMING THROUGH.” He rides Jacob around for hours. He gives Jacob superpowers. Benno climbs on my lap and snuggles me. He gives me love. And, of course, all of nursing knows Benno’s name now. They ask when he will return. He leaves a lasting impression.

I don’t know much about superheroes. My only knowledge of Batman is from the Lego movie. According to that, Batman can be a bit of an asshole. Maybe that just comes with the territory of being Batman, but God give me strength.

Please give Benno strength. I’m tapped out.



Monday: Calling Friends of Nightwing

An update on Jacob. He had a really good day today. Treasuring this day. He laughed, he played, and he even walked across the room to ride in his red wagon.

He is doing amazing! He is so 💪 . He finished his first round of chemo drugs today and he hasn’t thrown up. Not much has changed besides being a bit tired and cranky. He has lost his taste buds, as they are rapidly glowing cells so changed by chemo. Not the best thing for a person whose passion is eating, but does he complain? Nope. He just states it and moves on. He’s so much like his daddy. I am so thankful that he is just like his daddy.

The mom show continues. Today we made super hero masks for our teachers who came and visited (Thank you Mr. Street and Mr. Davis). We played Uno, we did math, letters, and, of course, we made legos. He gets tired easily so doesn’t want to build them, but he still likes watching me do it. He especially enjoys watching me struggle with something so easy for him. “Oh mom. You messed up again?!” We laugh. “Your not a master builder like me mom.” Ain’t that the truth.

Last night Steve and I held a shabbat service over him as he slept. Thank you for all the people who made that possible. I didn’t even know it was Friday until the packages showed up. So many of you pitched in that we were able to give shabbat meals to all the Jewish families on the floor. Many are from Israel. I can’t imagine being so far away and trying to understand doctor talk when English isn’t your first language.

I guess it can always be worse. It can always be worse.

Yesterday a boy went home that has been in the hospital for one year and one week. Can you imagine? I’ve only been living in the hospital for 13 days and feel like a crazy person. What happens to your mind? Your soul? People need the sun like flowers. He is 12 too.Can you imagine? 12. He understands all too well. While I didn’t know this boy, I stood beside all the nurses and cheered and hollered as he walked out the doors. It also gave me an excuse to scream. It feels good to scream. It was joyful. I wish I met him. I bet he is pretty wise.

I guess it can always be worse. I hate that someone else’s worse makes mine better.

Many of you have asked how you can help. How you can be there for Jacob. I have a task for you.

Jacob has a MRI on Monday. Its of the brain. I thought we were done with tests and the meetings in conference rooms with teams of doctors talking in whispers as if the voice level changes the meaning of the words they were saying.

Turns out were not done. While we have confirmed cancer in the skull (the bone), this test will look inside the tissue of the brain.

I need you friends. I need everyone to send positive thoughts. We need something to go Jacob’s way. He deserves this. So this Monday, get working! Get vibing! Get praying! Get high. Give a toast. I don’t care what you do as long as its in the name of Jacob.

The friends of Nightwing have shown me their power. Not sure if Nightwing has a “bat signal,” but he does now. Its radiating into the sky from York Ave. Look up! Its there. Time for action.

Silver Lining

I live my life on “shuffle.”

It’s a golden rule. My music is always on “shuffle.” I guess it’s some superstitious belief. Not sure what its about, but I believe songs are meant to play when they are “supposed” to be played. Leave it to chance. Songs can set moods and can send your day on unexpected paths. I guess I’m a believer in the iTunes algorithm of life.  My secret religion.

Today I listened to music for the first time since moving into the hospital. I was on my daily private cry walk and pressed shuffle. I wanted to crowd out my thoughts. I pressed shuffle and it came on, my theme song, my private theme song.

But first I must mention my PUBLIC theme song. As it does play a unique role in this journey too. I often watch the video where my public theme song began for strength. I watch it often. 

The public theme song was gifted to me by 700 clapping little hands and dancing feet. On my last day at Avenues, the lower division students surprised me with a flash mob.

Here’s a strange factoid about me (there are more coming!), I’m obsessed with flash mobs. I love the whole idea of them, the purpose of them. Or rather the lack of purpose of them. I relish the idea of people coming together in unison for no purpose, but joy. And of course, I LOVE anything that involves dancing. I’ve always been happiest dancing. But flash mobs are the highest level of dancing for me. The ultimate human dance chain.

The faculty at Avenues (especially Raina Crawford and Eric Ogden) know this odd obsession of mine and when I left Avenues they sent me off with 700 children doing a flashmob to “Don’t stop believing” by Journeys. 

It was the best thing EVER. I remember turning to Steve and saying “That’s it. That’s the best moment of my life. How can that be beat?!” How can you beat touching all of those lives and then add a FLASH MOB on top. My two favorite things in one! It was awesome. Beyond awesome. Better live, but this will do.

Since that day, I’ve promised that every time I hear that song, I dance like a crazy person. I dance for each of them. All 700. I’ve held up this bargain. Sometimes in some embarrassing places. Even alone when it randomly plays in Duane Reade. That got a few stares. But a promise is a promise. You don’t break promises to elementary school students. They remember this stuff. Promises are serious, especially those that involve a pinky. 

I would be remiss to not mention my mother’s favorite time this dance ritual happened.

This Journey (pun intended) has been hard on everyone. Two life threatening cancers in 7 months. This isn’t easy on anyone. Watching your child suffer is hard and I can imagine watching your child and grandchild suffer must be extra hard. So I share this story for her.

Mom, hope this helps.

 STORY: Steve and I rented a scooter in Menorca and traveled to the middle of nowhere. We had no idea where we were going. That’s our thing. Go off the beaten path. He drives and I point. We have found such beauty in this way of travel. No plans. No reservations. Just go.

Well on this adventure, we ran out of gas…in the middle of nowhere.

We were stranded. It was 90 degrees and not a car in sight. We called the scooter company and they were coming with gas, but they were a good 2 hours away. So we had 2 hours stranded in the middle of no where with one bottle of water. We put on music to pass the time. We SHUFFLED and there it was: “Don’t stop believing.” And I danced. In that heat. In that situation. I danced and danced. Evidence here. I truly have no shame and I secretly (maybe not so secret) love it.

There is a message here. And it isn’t subtle. 700 children sang it at the top of their lungs. They were clear. “Don’t Stop Believing.” I believe. I believe. Thank you for reminding me.

I believe Jacob will be okay, because you told me so.

But I have a second theme song, one that’s just mine. Well…now its just ours and I promise you have never heard it.

It is just my type of music. I grew up on Indigo Girls, Ani DiFranco, etc. The music with females voices taking their power. My inner theme song has played at unique times in my shuffled life. It played the day I decided to leave Avenues where I could have stayed forever. I could have stayed, but that’s not my path. I’ve never done “easy.”

Well that is for sure a given now.

“I won’t take the easy road.”

The song is called “My Silver Lining” by First Aid Kit. The album cover has 2 hippie women on it. Just how I like it:)

Download it. Play it when things are hard. I promise it works. It’s working for me.

“Take me to someplace where there is music and dancing.”

“Show me my silver lining.”

Got to keep on keeping on.