Nightwing

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.

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. 

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.

Steve and I made private vows for our wedding. We had a traditional Orthadox Jewish wedding so no we didn’t do them out loud, but we made private vows. They were a bit silly, but we stand by them.

Steve’s first vow to me (and they are in order of importance) is to always “Call Time Warner.” 

I hate Time Warner Cable. 4-6 hour window?! Who the hell has 4-6 hour windows? All of the windows span over teaching hours.  I can’t say to my class “dismissed, I have to run home and sit in CASE Time Warner Cable shows up?!” 

Just saying it (TWC), makes my blood boil. How do single moms do it? How is this acceptable? It is my least favorite phone call,  that is until now. Try calling to get life-saving time-sensitive drugs for your child and it takes TWO HOURS and every minute counts. 

I must have walked 8 miles in a 15-foot space. Pacing back and forth. At one low point, the drug rep told me that they don’t manufacture the drug I’m looking for. That Sloan Kettering and I are mistaken! Said as I was LOOKING at the medicine in the hospital, in my hand, with the company’s name on it. I MEAN….)@(#*)*UW(*&(@3UY(

It was my job to know 700 children and their families. That was MY job. If a parent called me up and asked me about their child, and I replied “not sure she goes to this school. You must be mistaken,” holy shit would the world explode! And this is what parents of children fighting life-threatening diseases have to go through. AHHHH AHHHHHHHHHHHHHHHHHHH

I’m rewriting my vows immediately.  I’m adding some things. I have a few names to add. 

Okay vent session is over.

Back to Jacob.

Today we are back in the hospital. It is routine to check labs. 

We got his labs back and he is at ZERO white blood cells. This is the low of the low. It doesn’t get lower…he has no immunity.

He is getting a blood transfusion now as his hemoglobin is also low. This is all to be expected.

 WAIT! Expected is NOT the right word at all.

I’m sorry future mom. Poor word choice. Erase that word. It won’t serve you.

For the moms walking in these shoes after me. NEVER make promises to your child. I’ve now broken 3. I told him no shots today.  “Everything goes through your tubies” (the port), but you really have no idea. Shots every day now. Painful shots. Shot that sting really bad. The most important thing to know is that once you THINK you know or you THINK you may know the “new normal.” The game changes. It just keeps changing. Expect the unexpected. The only thing you can depend on is your support “wing” (pun intended).

But more importantly…how is Jacob? He’s sleeping a lot. “I don’t feel good.” That is his only complaint. “I don’t feel good.” He doesn’t cry. He just states it and lays. He likes to lay in silence. No talking. Just alone with his thoughts. Then back to sleep.

That’s why I’m writing a lot. He’s sleeping and I just sit here looking at him and the blood tube going into him. Steve fell asleep. Thankful for that. My two survivors snuggled together.

Now…if you’ve read this far. I know you are a good person so I have a favor.

I just have SO many wishes/prayers and I can’t be using them on little things. And now BIG versus little has new meaning. I’m already down one BIG with Steve, and I’m scared to waste them on something silly like the 4th of July.

Anyone got one to spare? Anyone?

I would love for Jacob to see the 4th of July Fireworks! His favorite holiday. He has been making decorations for it. We have flags. We have plans.

The doctors told us that when he is at zero… it isn’t a question IF he will spike a fever, it a question as to WHEN. He has zero ability to fight anything. And when this happens, we go straight to the hospital and move back in. 

There is also a logistical issue. Of course, there is! No easy road here.

 They have closed off all the streets near us for the 4th of July. Having the best seats in the house turns out to come with a price. It will be harder to get Jacob to the help he needs. Thousands of people will be flocking to the parks that border us on both sides. Tens of thousands. Traffic! Street Closures. Hoards of people. People we would need to get through. 

PLEASE NO FEVER TONIGHT. 

PLEASE NO FEVER TONIGHT!

So…if you have a wish to spare and don’t waste your big ones, because I might come back to you again, please wish Jacob the strength to have a great 4th of July.  Do it for his daddy too. Jacob gets his love of this holiday from his daddy.

And below info on blood donations for those who have been asking:

Jacob is O positive. You can donate blood in his name, but just giving in general helps!

HEY “O” Positive People! You can save lives!

• Type O positive blood is given to patients more than any other blood type, which is why it’s considered the most needed blood type.
• 38% of the population has O positive blood, making it the most common blood type.
• O positive red blood cells are not universally compatible to all types, but they are compatible to any red blood cells that are positive (A+, B+, O+, AB+).
• Over 80% of the population has a positive blood type and can receive O positive blood. That’s another reason it’s in such high demand.
• In major traumas with massive blood loss, many hospitals transfuse O positive blood, even when the patient’s blood type is unknown. The risk of reaction is much lower in ongoing blood loss situations and O positive is more available than O negative. Type O positive blood is critical in trauma care.
• Those with O positive blood can only receive transfusions from O positive or O negative blood types. 
• Type O positive blood is one of the first to run out during a shortage due to its high demand. 

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 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.

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 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 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. 

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…