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.


Friends of Nightwing

Dear friends of Nightwing,

I’m shaking as I write this after receiving another package. I feel so filled with love. Jacob feels so filled with love.

My whole body thanks you. My whole soul thanks you. The love. God the love I feel. The gifts that have arrived, the notes that have shown up in my inbox (and Steve’s), the texts, the offers of support…endless.

You have given me strength. Today I was low, but tonight I feel invincible.

One example of what you have done (it may feel small, but its SO big):

Jacob pees the bed pretty much every hour as they give him drugs to pee so the chemo doesn’t destroy the lining of his bladder. It makes the nights a terror. Every hour we are up changing the sheets. We sleep very little. By the time nursing comes, and the sheets are changed, its a good a 30 minute ordeal.

Last night I especially struggled. I’m supposed to capture the pee when I can. I take this job seriously. I don’t play, I play to win. Last night I captured a lot in the pee cup. However, my shaking, nervous, exhausted hands spilled it. Everywhere. All over him. All over me. All the pee gone. And another hour of his sleep gone. The rest his body needs to fight.

And he said “you are making the night worse.” I was making the night worse. I berated myself for an hour. Didn’t go back to sleep. Determined to get more pee. I had one job. Capture his pee when I can so they can test it, to monitor the chemicals in his body, and I blew it. I spilled them all over. Did I hurt his treatment? Dumb dumb dumb. So dumb. Damn it Abby.

But after receiving the Friends of Nightwings package, I went into tonight recharged (literally, I got some extension cables for my phone! Thank you for that) and kicked some pee ass. I had the ability to think clearly and problem solve. I thought of an idea to capture the pee like a diaper without wearing a diaper (he refuses to wear one). I did it. Its working. Maybe we can sleep tonight. Wouldn’t that be something.

Thank you Friends of Nightwing.

You make me whole again. You have no idea how much I love you. You have no idea how much I need you.

I’m realizing now everyone doesn’t need a Robin in life, that’s what Alexa/ Go Google/ personal assistants are for. Everyone needs their own Nightwing.

I’m lucky I have a whole crew of kick ass moms as my Nightwing. Nothing tougher than that.

Seriously I know. I was their principal once. I really know. I’ve seen what they can do. These are some tough ass bitches who rule the world. I like to think of myself as one too.

Abby

Fortune Cookies

Today Jacob woke up and asked why we never have fortune cookies anymore. Again…so random. Where do these thoughts come from? I wish I could climb into that brain, suck up the cancer, and then just get a peak into how that thing works. The thoughts of children have always intrigued me. Maybe thats why I work and study them, but lately I’ve been looking at Jacob like a little Yoda.

Teach me I say.

Honestly, I don’t even remember him ever having a fortune cookie. I’m sure at some point he’s had a fortune cookie, but I have no memory of this. But he pressed on with this thought.

Jacob: “Do you remember what it said.”

Me: “No. Do you?”

Jacob: “You’re never too old to dream. Isn’t that a good one? I got a good one.”

Me: “Yeah thats a good one.”

My yoda. My little yoda. But I quickly moved us forward with the day. I find living in the future as the only way now to live with the present. “What should we do next?” I ask, even when we just started an activity. Scared that we will be living in the now. I hate this now. Let’s just plan for tomorrow.

The rest of the day was go go go. When I mean “go go go,” we don’t actually go anywhere. We live, play and eat in 150 square feet. But its lively. It’s the “mom show.” First thing we did was brainstorm all the things we could do today and I made an activity board. And we check off the things we’ve done as we go. For every 5 things he puts on I get to add one (I snuck in math and letter formation practice). Knowing that Jacob won’t be joining his peers this fall for Kindergarten, and this is our new normal, I want school to be embedded into everything from the start. And it feels good to be useful. This I can do.

He was, of course, cheery. A bit tired and didn’t want to leave his bed, but I brought fun to him and he partook and seemed to be enjoying the mom show.

It was time for lunch. He wasn’t hungry. It was time for diner. “NO” he yelled.

He stopped eating.

This is not Jacob. About a year ago Jacob over heard someone talk about their “passion” and he asked me what that meant. I explained that it is something that you care so much about that if you had your choice you would do it all the time. He thought and proclaimed that eating is his passion. We have been laughing about this ever since. Especially with his little pot belly, eating as a passion seemed fitting and delightfully refreshing since his brother eats nothing.

I knew how to solve this. HAPPY MEAL. Every time we are in the car and Jacob sees McDonalds he sings: “Nothings better than McDonalds.” He’s a super fan. So much so I put it on my vision board (I’ll post about this sometime).

So I went out and got him his favorite thing in the world. His eyes lit up at the sight of that box with golden arches. He put one in his mouth bit down, but didn’t chew. He didn’t want it.

That can’t be. He didn’t even ask for the toy. I put a fry in his mouth and he got mad at me.

I can’t even tell you how that felt. I know I’m supposed to expect this. I know I’m supposed to be prepared for this. Chemo makes you sick. The doctors say he will start to lose his hair soon, and develop sores, and there are a host of possible side effects and complications, but refusing Mc Donalds?! It put me over the edge.

I went to cry. Steve took my place. Always prepared. Always ready. “Babe you need to prepare yourself. This is going to get worse before better.”

But how? How do you prepare for this?! I can’t. I can’t. I can’t even see my kid not eat McDonalds, which is most parents ideal outcome. I just feel so unprepared.

I went outside. I’ve been outside now 3x. Each time its a shock.

Did you know its summer?!!!!!

For some reason I can’t comprehend it. It feels like winter in my bones. The humidity hits me hard. I put my face into the sun. and then I screamed like a mad woman on the street. I kicked a building for a good five minutes. The building won, but the pain felt good.

I found my mom and a friend and I guzzled a glass of shitty wine and it dawned on me.

FORTUNE COOKIES!

I came back and threw the cookies in the air and we found the one that pointed to him.

“You will have a future of wealth and success.” He asked me what those two words meant and I told them, but I was just stuck on future.

And guess what? He ate the cookie. That was the only thing he ate, but he ate that cookie.

Thank you Panda Express. Thank you.

Trip advisor review: ⭐️⭐️⭐️

By Jacob Brody

this is written yesterday but didn’t have time to post.

Everyone, rightfully so, wants to know how Jacob is doing.

In the past couple days he has gone “under” 3x, had a blood transfusion, had pieces of bone and it’s marrow along with a sample of his tumor surgically removed and has had scary test after scary test.

And we haven’t even started.

So how is Jacob?!!

He is telling jokes, drawing pictures, writing books/poems, building Legos (Sometimes with one hand and now we’re challenging him with his eyes closed!), watching movies, and on the flip side quiet

Introspective and quiet.

But I’ll let Jacob tell you himself. I asked him what he liked about the hospital. Below is the list.

1. There is no bedtime. “You can stay up as long as you want and sleep as late as you want. That’s what Mom says.”

2. My”quackmobile” many of of you may not be aware that Jacob is half duck. My child is so talented that he speaks three languages (English, Spanish and quack). He and his friend Dalton from school speak in duck. And duck has come in handy. Turns out that is also his scared language. When doctors come in that he doesn’t know, he quacks at them in a silly voice

His quackmobile is a red wagon. Jacob just like his father doesn’t like his feet to touch the ground. Waking to the Brody boys feels inefficient. We don’t do inefficient. His father uses his toys like electric scooters and bikes, but Jacob has his wagon.

We play Uber and we pull him along the peds floor. His favorite driver is Benno. We know this as he rates us with stars. I’m unfortunately negative stars right now. I’m working on my turns. My father was once in the lead with 100 stars, but sadly he lost them all. Geez! One bad review can really kill a career.

3. The “salmon and rice.” He just loves the hospitals salmon and rice. Go figure.

4. “Tug, but he’s dumb.” The hospital has these robots that deliver the food to the floor. We made a big deal about these when Steve was in the hospital to make the hospital less scary for then. Still a big hit and now distraction (constantly looking for distractions). Today we got to witness a robot standoff. They ran into each other paths and didn’t know how to go around each other so just beeped at each other for about an hour. That was the highlight of the day.

5. PG-13 movies. ” in the hospital mom lets me watch whatever I want. ” I’ve got bigger battles to focus on.

6. “I wear pajamas pants ALL day long.” So do I. I wear sweatpants and eat bagels all day. The idea of buttoning my own pants just sounds exhausting. I have no time for that. Sweatpants it is!

6. “Mom sleeps with me every night.” I curl up right next to him In his hospital bed all night. Ready to fight. Listening to his breathing. Any snore and I’m up. His tumor is wrapped around his aorta so I fear for this every second of every night. Sleep is not something I’ve seen in a while. Crazy because im trying to write how many days I’ve been without sleep, but I can’t figure it out. It’s like a time warp here. I just had to ask the nurse what day it was. And she told me, but by the time I walked across the room I forgot. Time warp.

7. The “office”. Jacob made a friend. He just left from his chemo round. His name is Lou. Lou has a rare brain cancer. It happened when he was 1 and he just relapsed at 5. Lou holds court here At the nurses station. He’s sadly a veteran. he has his office. He inspires us. Lou’s mom is wearing dresses and seemed to have her hair brushed. what?!! How is that even possible?! She is someone I wish I could be. But I’m going to do this my way, bagels and sweatpants ONLY.

Now the parts he hates the most.

Jacob keeps track of these things for his “trip advisor review.” He had me write them down so we don’t forget for the post.

1. The “Band-Aids” from his surgeries and port. Changing them are scary. We all have to wear masks and it hurts. “That makes me cry.”

2. “Everyone talking.” This has been hard. When the doctors come in all I want to do is hang on every word. Looking for light. Looking for a positive word. We have yet to get that. But I also have a 5 year old that wants me to color, lay with him, and play. I’m on 24/7. I’m entertaining 24/7. And this is my thing. I’ve spent my career entertaining kids. Putting on Assemblies, costumes etc. And I love that part. But this is the hardest “show” I’ve ever performed. inside I’m crying, screaming, weeping and scared.

3. The “gross stuff.” He has to drink stuff for scans.

That was his list and just like the boy he is… The positive always out weighs the negative. He gives it three stars.

My rating. Hell. This is hell. Zero stars. Negative stars. Don’t get me wrong the staff is lovely, but there is not one minute I want to be here. I feel like I’m going to vomit all day and night.

However, I don’t. Because of NIGHTWING. I’m really in awe of him. He is so brave. I would even go so far as say the bravest kid ever.

We attempted a cat scan with Benno once over back pain. And I really mean attempted because he wouldn’t even lay down. Crying, running. We tried on three separate occasions and we were prepared. We downloaded the sounds of a cat scan on his ipad, we showed him pictures prior, we practiced what it would feel like but HELL NO. He screamed and he ran.

Jacob never gets to practice and sometimes no heads up at all. Sometimes we have to move quick. He gets no preparation and due to the need of a sterile environment, he doesn’t get us. He just walks in.

He’s only five

He walks in to a room of strangers in masks and gets on a bed and goes into a tube. And then they give him directions like hold your breath. And he does. He listens. He doesn’t cry. He performs perfectly.

But He gets quiet.

Quiet like his dad. Taking it all on so others dont have to. The world gets scary and he gets quiet. He hands over his arm to get punctured. He may say “I’m scared” or ask if it “will hurt,” but does as he is told. Giving you access to his body. he may cry at the pain, but he allows it. I see children being held down for tests but he holds me down. He holds me down that’s for sure.

He also hold me up.

Shouldn’t it be the other way around?

“Cancer Rhymes With Answer”

I’m learning the greatest gift is his childhood, his innocence. His view of life. His understanding that evil only lives in TV shows (and the White house…sorry dad). And of course there are superheroes to save the day. Good always win. Evil just makes a good story line. Without it there is no exciting battles. He likes the battles.

We told Jacob he has cancer.

It has been recommended to us by our doctors and the incredible child life specialist team. Their reasoning: Jacob will be surrounded by other children at Sloan with cancer and he will hear this word from every corner of the room. Let’s be honest, he already has. When he loses his hair, people will point and whisper “cancer.” He will know. Of course he will know. Jacob soaks in all. Jacob is aware. He is the one who has the three tubes sticking out of him. He is the one who walks into sterile rooms with his parents behind double doors and lays down in front of machines We must control the narrative. So we told him.

“You know that bump that they found in your belly like daddy had in chest, they found out what its called. Do you want to know what it is called?”

Jacob: (silent nod)

US: “Cancer”

Jacob: “Cancer rhymes with answer.”

I was taken aback from his response. This is not a Jacob thing. On occasion he will make up silly songs using rhymes, but it wasn’t a song, it was just a statement. “Cancer rhymes with answer.”

It hung there for a bit. I mean cancer is the PROBLEM, not the answer.

I live in world of problems/ questions.

  • Why did my husband get cancer?
  • Why did my child get cancer?
  • Why when I accepted the cancer and just prayed that it hadn’t traveled north, did he light up like a Christmas tree on his scan, including the bones in his skull?
  • Why is this happening to my family?

I could go on and on…I have a list going. I’m on page 6. Pages of questions, but no answers. I’m looking for answers.

Jacob just said “cancer rhymes with answer.” Looking for meaning here. Looking to understand really anything right now. And as we know, Jacob only speaks truth.

Maybe its a simple as a child being a child. The clever nonsense that comes out of their mouths. Like just now when he explained to me the difference between a “statue” and “sculpture.” “Statues hold things. Statues are stronger. It’s not the sculpture of liberty mom. Its the statue of liberty.”

Or maybe its more.

Maybe its more concrete. Cancer was the answer to his belly pain. That is the answer. That is what caused it. We started this journey due to his constipation. Yep. You heard that. Constipation is what brought us in.

Or maybe there is an answer I don’t yet know. Maybe there is meaning that I can’t see yet.

I have walked this path before. By NO MEANS is it similar. Steve’s cancer feels like nothing now, a blip, a rained out game. But walking away from almost losing Steve this last October, we changed our lives and I found meaning in the pain. We decided that life was short and we wanted to live “our best life.” We became one with the sea. I started a business to make sure no one felt the way I felt; unprepared and unqualified for the day to day realities of independent living. I founded Mind the Gap. It brought answers to problems in education that needed to be solved. I was going to help millions! I saw such good.

I hope that to be true now. However, it just seems unfathomable. I see my son suffering. I see how unfair the world is. How unfair it is to me, Steve, Benno and Jacob. To my extended family. And to all of you who need to bear witness.

But its true answer does rhyme with cancer. I can’t deny that.

Nightwing

My five-year-old Jacob can name every single superhero with great detail. He can even tell you if they are from Marvel or DC. He can tell you if they are human or superhuman. He can name what planet they came from and who is their greatest enemy. He can name every Star Wars character and tell in great detail their journeys. I know that may seem not very impressive, don’t all little boys love superheroes and Star Wars? But that just isn’t true. Our eldest, Benno (8), never mentions such things and we aren’t the superhero type of family: We spend our time talking about boats or 3-D printers. Superhero chatter doesn’t make it to our dining room table AND we don’t really watch any of the movies.

So how does Jacob know all the intricate details? When I ask he lists a friend as the source or a game played on the roof at school, and yes, YouTube. He just picked it up along the way, as he does with everything in life: Picking things up, soaking in all that the world has to offer and especially factoids that have capes!

That’s my Jacob. He knows everything. And unlike his brother who THINKS he knows everything, Jacob speaks only truth. He is a natural observer who soaks in all that life can offer.

Sadly, life doesn’t always offer good. Life includes unexpected sorrow and heartbreaking hurt and, suddenly (and often lately) in my family’s case, cancer. Just like everything else Jacob does he soaked cancer. He soaked it in all over his little body.

He is officially diagnosed with Neuroblastoma, stage 4. And now my little Jacob knows another adult vocabulary word: Cancer. He hears it all day long as people in white coats buzz around him poking, prodding, and taking vitals. 

But more on that later…unfortunately, a LOT more on that later.

Back to Nightwing.

I recently learned that Jacob’s favorite superhero of ALL the options (geez there are a lot of them?! Have they created more in recent years?) is Nightwing. I found that odd. I had never even heard of Nightwing. I’ve heard of Wolverine and even an AntMan, but Nightwing was a new one. How could he beat Spiderman? Or what about Thor? Who is Nightwing?

I have been Googling (God I do too much of that recently), mostly words that have too many vowels and sound like aliens from Jacob’s superhero shows, rather they’re medical terms that hold my child’s life in their syllables. But, when I googled Nightwing I learned that he is Robin as in Batman’s Robin, but when he is Nightwing he is working on his own or next to Batman (opposed to being Batman’s sidekick). ‘Ahhh’, I thought. ‘Yes. This makes sense’. Of course, Jacob’s favorite superhero is Nightwing.

Benno is Batman. It’s not that Benno has claimed to be Batman. He has zero interest in it. Jacob doesn’t HAVE to be Robin by any means. He chooses to be Robin, because that is the kind of kid he is. Thoughtful. Adoring of those closest to him and there to help. BUT he isn’t just  a sidekick either. He’s Nightwing. So, I’m naming this blog Nightwing. And that is my intro to this journey of heartache and (I hope) strength. 

I Googled “how to write a blog” and you are supposed to “introduce yourself or your topic.” I’ve never been a “blogger” before. I actually think blogging is ridiculous. Who wants to read about the intricacies of someone else’s life (at least I didn’t). To be crude, who the fuck cares, but clearly, it’s a thing and now that so many of you have expressed such interest (sincerely, thank you), here I am, being a hypocrite and now…I’m blogging.

About me (rule #1 of blogging): I’m a worker. I don’t stop. I work day and night. I have spent my life dedicated to children, learning how to serve them best. This is going to sound cheesy, but anyone who knows me knows I mean it, I really want to help make the world a better place through education. Wanna chat about curriculum and schools and the state of education today, grab a cup of coffee (I’d rather grab a pastry or fro yo), I’m your girl. I can’t sit still and watch the world burn. I taught for 12 years, helped design and build a school that would create best practices to share with the world. I worked from 6am-8pm for years and only left my last job to start a business when I felt I could help more people.

I mean bloggers (🙋) were a joke to me. Get a real job people! Who has time for reading all about your “feelings”?!  But,now all I do is hunt for first person experiences that can help me comprehend the personal and navigate the clinical – I desperately need the voices of the bloggers who have traveled the road I’m about to walk. This is my most difficult and scary job to date. This one is 24/7. This one has no “end of day,” no “end of school year” and no other option but to plow across the finish line and win.

I look for people’s stories so I can learn. Thank you for those who have shared so that mom’s like me have some direction to point what feels like a sinking ship. And, unlike all the times I’ve read product reviews and been grateful for the time someone put into sharing their lessons, but would never be bothered to give back my own, in this moment of hell I’m going to find solace giving to that mom who inevitably is trailing me by a few days, months or years. I hope someone leans on my words the same I have others. 

But, to my audience of one (assuming at least my mom is reading this)…I have NO IDEA what I’m doing. I’m so freaking scared. It has been less than a week since we just thought Jacob had a stomach ache and he’s already had two surgeries, a blood transfusion, and from what I gather, we haven’t even crossed the ‘start’ line yet.. We just have a diagnosis. A sheet of paper and statistics in medical journals. We have a long road to physical recovery and an even longer to emotional healing. The real game-plan does not fit on one 8×11 sheet of paper. It has no map with every curve delineated. I can’t predict it. I can only know this, we will get there. My job is to figure out how to do that for Jacob.

I’m his mother. I’m supposed to protect him.

I’m going to have to learn from the best, Jacob, he’s been playing this roll his whole life. I need to not just be Jacob’s Robin, but be stronger than that, I need to be his Nightwing.

Maybe I need a cape. My mom thinks I need my roots done. I think I’ll do both.

Thank you for joining me, us, him, on this journey.