Nightwing

I collect commencement speeches. I love them.

People who have worked with me know this factoid. I can even be pretty annoying about it. I will even make you sit and watch them during faculty meetings.

There are no bigger speeches in life than commencement speeches. This is the speech of reality. This is the speech that matters. It matters more than all the tests, all the papers, all of the projects, this person is going to tell you about LIFE. They are going to launch you into the REAL.

Its big. 

Your small. 

You are about to “enter” something. It could be college, it could be the workforce, it could be the military, but you are leaving to go into the “unknown.”

These speeches often are about dreams, rah rah, “you can do anything,” but I collect different ones, ones with real advice. Ones with experience and data. Ones that every child and adult should hear, because experience is the real key to life, not school.

I have one clear favorite. It’s Steve’s too. 

Admiral McRaven’s.Yes that name is someone you know. I hear you saying it. “I know that name, but how?” He was in charge of the Bin Laden raid and is one of the MOST respected men in the world. Or at least in my world. He is a man of sacrifice and dignity.

Its 19 minutes. Put this in your schedule. Make in into a nicely colored block of time if you need to, because you need to watch the ENTIRE thing (or at least the first 10 minutes). I know you’re busy.

 It will change how you parent. It will change your daily life.

I share this with you here.

So mom/dad going through this, or mom/dad right behind me, if there is anything you can do in this fight. If there is anything we can do to make it more manageable. If there is anything we can do at all when everything feels so out of our control. It has to be simple.

Let’s make our beds. Our home beds. Our hospital beds. Let’s make them. 

I know it’s not easy. 8AM is my least favorite time of the day. I am at my lowest, but today I started making my bed.

People keep telling me how “brave” I am. 

I appreciate the compliment, but it is not deserved nor the compliment that is warranted.  Let me be clear that this journey is not an act of bravery.

People who run into burning buildings. Brave.

People who free climb. Brave. Stupid, but brave.

People who try something that is new and scary to them, like Benno, brave.

To be brave requires choice. You choose to walk a path.

That is the difference.

I am not brave. Jacob is not brave. 

We are fighters. There is nothing brave about it. There is no moment when we had choice. No moment of decision to not run into the burning building. No moment to decide to wear a harness when scaling that mountain, and no choice in living this scary experience or not.

No choices, but one. FIGHT.

Maybe it’s better than being brave. You have no “out.” You have to be all in. Maybe it’s stronger than brave, but brave it is not. 

You just got to laugh.

I got a few calls last night around 8ish (I think). 

“Do you have lights?!” from frantic voices on the other line.

My favorite comment was: “I heard Manhattan has a power outage and I just assumed that must include you. Or is it just your apartment? That sounds likely too.”

At this point, that is a fair assumption, but we had lights! Shockingly we did not get hit with this burden.

We have light and this something was something to celebrate.

I’m not one to share videos, don’t get used to this, but I think this one is worth sharing. It shows the ability to find light in every situation.

Background information. We weren’t supposed to be in the city. We were doing construction all summer. But its good to be home and to be honest, “garage” living is just the way the Brodys like to roll. More places to build. More places to store Steve’s vehicles. 

Although…we should probably have some railings etc. It’s getting better, a day ago there were ZERO railings. Just a hole in the ground to fall through.

No furniture is ordered and we really have no interest in doing that. It’s just more STUFF. More stuff to have to get around. We don’t wish for a thing, except health over here. 

But…

You just got to laugh.

A wise neighbor, Roz, said this to me the other day.

“You just got to laugh.”

LET THEIR BE LIGHTS!

You made me smile. 

Like a real-life genuine smile. 

Both Steve and I.

Guess who called?

Someone from Option Care. To apologize. We were prepared and were able to name 7 different points of malpractice and they listened and we’re horrified.

YOU made a difference. WE made a difference. In the Jewish tradition, this is called a mitzvah. 

You are a mitzvah.

Think of all the people you have helped. All the people without the ability to say this is wrong. Without the support network, the words, maybe with even fear (depending on the immigration status). 

It was a pretty pathetic phone call. They were apologetic, but when you need to tell a company about a concept called google maps and how you can track traffic patterns and make an educated estimate, you know you are talking to the walking dead. 

But at least they are going to work on it and isn’t that where all solutions begin. You held them accountable.

WE DID SOMETHING TODAY. SOMETHING GOOD HAPPENED.

And I know it wasn’t easy. I know you probably were put on hold. Or spoke to seven different people. 

Oddly, this makes me feel closer to you. You are on my time now. We can jam about this. I feel more connected.

Thank you. Thank you.

OH And Steve and I talked after we smiled in victory.

We realized that we need to upgrade our phone plan. We recognized that working on two different times zones is the exact thing that Jacob needs. We compliment each other. We are in yin and yang. We are the ultimate team. 

Now if we can just get the right service provider for that communication we will be all set:) We are taking bids.

Thank you all. 

Abby, Steve, Jacob, Benno and all the families dealing home care needs

We’re on different time zones and we can’t get a good connection. 

Loads of static. 

“Can you hear me?!”

“Can you hear me now?!”

CAN YOU HEAR ME NOW?!

We are about twelve hours apart. I’m in New York and he’s in China. We have to yell. How else can he hear me? How else can we communicate? We are continents and oceans apart. 

Steve prefers the days and I prefer the nights.

Steve dreads the 8 PM. I dread the 8 AM.

He dreads the winding down. The time he is supposed to stop. The time we used to hang. The time we used to just talk about what we thought was everything and now is nothing. What is there to talk about really beyond experimental trials and research? And it’s depressing.

I think he dreads seeing me too. I get it. I’m not insulted. I’m not me. I’m quiet and sad. It’s depressing. 

And the day is full of chatter. This “Steve,” the one few have met, talks to Everyone. I mean everyone. He is always on the phone with every research institute, every hospital, every lawyer, every doctor, and here is the strangest part, every stranger. Now, this is not super odd behavior, but the timing is.

“Vacation Steve” has always talked to everyone. When we travel, he becomes a chatter bug, intrigued by every person’s story. He likes to talk to the bartender, the taxi driver, the man begging on the street. He stops for everyone.

This is ANYTHING but the case in real life. 

In our day to day, he usually has no time for extraneous. Milking every minute out of the day using his gadgets and tools.

And here he is with seventeen full-time jobs: work, Jacob, medical bills, insurance, our remodeling (we finally have floors. No furniture but floors.),  air quality testing, and the list goes on and on, but yet he has time for EVERYONE. He’s “vacation Steve.” It’s all a bit hard to understand. 

But yet I do.

He fears silence. He fears stopping. I just glanced over his shoulder as we sit together, but parallel. I just finished a work call and he is “busy.” He is watching videos of someone whittling wood. Someone doing craftsmanship with wood. He fills every moment of every day with sound. 

So he hates the night. He hates the “winding down” because he has to stop (that whole sleep thing) and he might have to think, or feel. He might have to feel.  That is dangerous for him and all of us. One because I know what feeling is like. I’m doing enough feeling for the both of us and its not a good place to live. It’s a lot of work. A lot of pain and love.  A lot of searching. It is easier for him to go go go. To research, to pay bills, to work. And we need him to do this too. So he just goes and goes. This is Steve’s new life. 

Over in the USA I am 12 hours behind.

Always behind.

I dread the mornings. I dread waking up. I dread remembering and knowing I have to do it all over again. Knowing what the day looks like for Jacob. That I will need to explain that we will be spending the next days in the clinic for 8-12 hours for chemo. That feeling “better” was fleeting.

And I will need to yell all the way to China to confirm medication dosages and my Mandarin is terrible. 

But we keep yelling over all that static.

“Can you hear me now?!”

I have something I need you to do.

CALL THIS NUMBER. 1-866-827-8203. Ask to speak to Tex Sarah Jackson. I think that is her name.

YELL AT THEM. YELL AT THEM FOREVER. VENT. GET ANYTHING OUT THAT YOU WANT TO GET OUT.

Tell them about Jacob. Tell them about you. About your laundry machine being broken or the camp bus that is always late. Tell them about how hard life is and how they are supposed to bring comfort. Tell them THIS story. TELL THEM THEY SHOULD DO THEIR JOBS. Their jobs matter.

This is just ONE of FIVE fires yesterday. Too tired to recount them all, but like every story in my life, they are a cocktail, laced.

They are laced with beauty. They are laced with poison. All at the same time. It’s hard to fathom that altitude and depth can exist on one plane. That hot and cold can exist on one palate. And that happy and sad can exist in a single emotion. But this is how every day has been and I’m not making this shit up.

Jacob needs to receive antibiotics every day now as he has an infection. This is “expected.” He got it when he had zero immunity. 

He needs them within a certain time each day. The hospital sends you a home care provider to come to your home and administer the drug the first time through the port. After that, you learn how to do it yourself. Another responsibility among the 7 other responsibilities of Jacob’s timed medications that already exists.

We had a window of 3-5pm. They called and said it may be later but definitely before 6. We call the hospital, they say 6:00 is okay. Alrighty then. We have nowhere to go anyways.

Steve, being Steve, actually questions the company as they say the representative is coming from New Jersey.  Can she get here on time? He is always looking for danger. They ASSURE us this is NOT a problem. 

6:00 rolls around. 

6:30 rolls around.

We have called the nurse twice now. She is in traffic. She doesn’t know the area. She doesn’t even usually work this late, but she is “close.”

We call the hospital. “As long as she is there soon.”

We call the nurse AGAIN. Now we are angry. Now we are concerned. She says “five minutes.”

The hospital says that is faster than it would be for you to get here. Stay put. 

And then it’s now 7:25 and she is not here and we are out of options. We are too far from the hospital. Do we go to the ER?! The ER?! The pinnacle of germs. Bringing Jacob there would be dangerous.

WHAT THE FUCK DO WE DO?!

And then she came. At 7:38.

I SWEAR PEOPLE. It took my everything not to take that woman out. I could kill her, I was capable of killing her. BUT she has the medicine.

She has my child’s medicine. 

It doesn’t start out well. Steve’s swearing. I’m pacing and I can’t learn. My entire body is in fight and flight mode and I want to fight, but I realize I need to flight. I take myself out. I go downstairs. Steve will learn. I need to take myself out or I will hurt, I will hurt the woman that I need. I step out of the room, but all I want to do is call this service provider. I want to speak to the boss. I want to speak to them NOW.

Not just for me, but all I keep thinking is about the single mom or the non-native English speaker navigating these waters. I want to talk to your manager. I want to buy you. I want to buy your company and dismantle it. I want to crush you.  I want to FIRE you. That will give me pleasure. I get the “after hours” message, but it says hold on for a rep. I held on for 28 minutes. No answer.

I took a walk. I had to get out. I go to buy Jacob a new toothbrush. I buy 6 and I buy every toothpaste in the aisle. Things taste different now so who knows what will work. So I buy them all.

When I come back Steve is talking to this nurse. Our villain. She is still in our home. She stood between Jacob and his health and now is sitting with my husband. I think they are talking about his cancer. I’m unclear. I just know I have some teeth to brush. 

I go to Jacob. Steve comes down and tells me this nurse’s story. He explains to him the break down in command. How it wasn’t her fault. How there was no one available and she filled in. She is the head of nursing at a hospital. She is kind. She is Jewish. She did us a favor.

But I’m still angry. How is it OUR problem and at the cost of Jacob that a company is understaffed? When a teacher calls in sick, I didn’t call all the parents and say “sorry we just don’t have anyone around.” I just don’t understand.

But Steve heads back up and keeps talking to her for 30 minutes and I slowly, painfully, join. I learn she is modern orthodox. She explains to me all of the GAPS in health care. I’m listening. I’m taking notes. This is what I do. This is MTG’s mission. And she mentions that she missed Shabbat. 

Oh its Friday!  We didn’t realize. Or rather we forgot. How can so much happen in ONE day? It is still Friday? We have done 7 days of work on this one day. How can it still be Friday?!

So we were late, the sun is down, but we AND the home care nurse sat for Shabbat. I had a piece of white toast and candles that I lit on the stove, but we did it. 

With the woman I swore to destroy. A woman that at one point I was calling for her termination. A woman I wished harm. 

We said Kiddush and then she left and she was kind. She has devoted her whole life to children like Jacob. She is an angel. 

Its all a lot to process. Or rather impossible to process. Sometimes I just go numb. Too MUCH INPUT. TOO MUCH INPUT. Like a robot in the movies, I just get quiet and silently power off. I’m still walking around and doing stuff. I’m still taking care of Jacob, but my soul is off.

It’s the darkest of dark and the lightest of light. Within minutes, seconds, even simultaneously. If that is even a thing!!! But it’s real. And it’s freaking crazy way to live. 

It’s an extreme ride.

Can’t be good for those adrenal glands. 

SO listen to me people. You ask how you can help. THIS is how you can help. CALL THIS WOMAN, Tess Sara Jackson. I honestly don’t know how to directly get in touch with her. Things don’t work like that in this world. It is meant to be harder for some reason. Maybe you will have an easier time, but you tell them its not okay. You tell them this is malpractice. You tell them that this is life and death. 

This would make me happy, but make one thing VERY clear…the nurse is NOT at fault. She is a nice woman who did her best. She did the best she can and we PILED more on top of her, exactly what I promised not to do.  Maybe you learn that Tex Sarah Jackson is also piled upon. Okay that’s fine…than let’s FIX it. Use your power for THAT.

Make me a promise?! Please stop. I know what you are capable of moms and dads. I know that WHITE PASTA for some of you is literally the greatest enemy on earth. Or a non organic yogurt. Just stop. Just fucking stop. Seriously. Listen to yourselves. I wish I taped you all when you came in angry about a HW assignment or a bus seat assignment. 

And you don’t know your power. You don’t know how strong you are, there is a power in a parent like no one has even seen. You are wasting it and you may need it one day. And you yell loud and you make all the people who are just trying to help jump. You make us jump for the STUPIDEST things when we are working on such a bigger picture. So stop this behavior RIGHT NOW, because you hurt everyone including your own child in the end. 

BUT I do understand the need to vent. From now on this is the number to use for those Avenues parents. Here: (212) 935-5000. That’s HQ. They sit in desks and know nothing about what they think they know about. They are like Benno. They have all the answers, but yet not a cent of experience to back it with. It’s funny, right? Or a bit ironic? We believe in experiential learning and key to that is EXPERIENCE! It would be good for them to understand the day to day functioning of a school. AND they don’t have to schedule when they get to pee every day. Their available. Call them.

Your anger is dangerous and powerful. Use it wisely.

Dear Playmobile,
On behalf of ALL of us, all the parents of the world, I am reaching out to give you some feedback. You SUCK. Your instructions are disabled as the word “instruct” means that they say actually something, you teach. However, these “instructions” have ZERO words and are drawn to not instruct, but for me to infer. Infer whatever the fuck you have in your sadistic brain. Your diagrams require a magnifying glass. Seriously at one point, I needed a magnifying glass. All the pieces look alike and for the first two steps, I had to open 3 different bags, each full of a zillion little pieces (that of course can roll and get lost). And to build it you need TOOLS and the strength of a giant. There is nothing appropriate in this box for a child nor an adult. 

BUT your box is all shiny. It shouts immediate fun inside! It says “I’m for you kid!”

My child opens it to find just loads of pieces, nothing whole, nothing whole, just TINY parts. Parts that make your head explode! Parts that an adult, and for sure not a child, can’t make whole. You ain’t lego (which for the record has impeccable instructions. You should go meet with them. Do some “best practices research.”)  I didn’t sign up to build. We signed up to play. PLAY! Aren’t you the PLAY MOBILE. You bring play? You make it MOBILE?!

This is false advertising and when Jacob is better, MTG has solved higher education, and neuroblastoma is cured, I’m coming after you. You are number 4 on my list. “Take PLAYMOBILE DOWN.” Or maybe better said, help you develop a product that is functional and communicates its needs correctly. I’m a teacher I can help.  You can reach me at abbylbrody@gmail.com. If I don’t hear from you, you will from me. Let’s say ten to fifteen years. 

But until then FUCK YOU.

Sincerely,

Abby Brody

I wrote this and wanted to send it in their “contact us” section, but its just another distraction. A distraction from my life. This whole thing is ridiculous. Our life is ridiculous.

I spoke to the pharmaceutical company AGAIN and AGAIN got passed from operator to operator and then…disconnected. AHHHHHHHHHHHHHHH!!

Why are people so bad at their jobs?!

WAIT! I know why. They have NEVER been prepared. I’m solving that. Mind the Gap is solving that. I went to work today. It was AWESOME. Really awesome. My team is awesome. I got to be human for 3 hours and I’m so proud of this work.

But it all disappeared when I came home and Jacob was holding a shiny box…

All I want to do is scream. Scream for Jacob (who is doing the BEST of ALL of us, but crying at the Playmobile build time). Scream for Benno. Scream for Steve. Scream for all of us. This can’t be real. This can’t be happening. 

Don’t get me wrong life had plenty of playmobile sets before, but now I have no room for their nonsense.  Out life doesn’t function like that. I don’t have time.

REAL life keeps drumming on. Evidenced by Playmobile. It’s still building parent torture experiments. The day to day hasn’t stopped. 

ALL the things that we used to deal with:

• Getting the groceries
• Appointments (dentist, chiropractor, hair, whatever!)
• Scheduling the plumber
• WORK both of our JOBS
• Coordinating children schedules
• Coordinating schedules with you
• Texting
• Email
• Buying birthday presents (can we at least ALL stop that. Our kids have enough. They do not want). OR if that doesn’t seem fair, let’s have them make an amazon wishlist and we can get you whatever your child wants so you don’t have to spend your life with crap you don’t need. Anyone?!! 
• Showering (showering you AND your children)
• Brushing your teeth….

You get the point. Life keeps you busy. We are stressed with just that…

But now ON TOP OF IT, you add cancer, twice. On top of it all, you add cancer for your child. You add days in hospitals, you add anxiety, you add seeing your child’s hair trail around the house. It fucking sucks. 

I swear. I never swore this much. I’m a good midwestern girl.

However, according to a recent study, people who swear are smarter than those who don’t. So FUCK YEAH.

But I point out my misery not for you to have a pity party for me, but honestly, I deserve one. I recently learned that depression is a narcissistic disorder. “No one has it worse than me” disorder. So add that to my insta profile. “Educator, student, life enthusiast, and fucking narcissist.” Perfect. Complete. 

I only share this to ask you to be KIND to EVERYONE. Literally everyone. 

The stranger. The friend. The Family. Even that Uber driver that missed your turn. Don’t yell because you have NO IDEA what his/her life is like. You have no idea what he/she may have ON TOP OF IT ALL. 

Because if you pile on…you are just as low as playmobile. And they fucking suck. 

Spent time with Benno today. 

It is amazing how he walks in this world. Everyone enchanted. Uber drivers to strangers in the elevator, just enchanted. “How old is he?” The question always asked. Followed by “Did he just say XXX?” with bursts of laughter.

Benno knows all catchphrases or idioms (sophisticated ones) and uses them well. I remember when Salek Brodsky pointed this out to Steve and I when Benno was 5. “He just times them perfectly.” He slides those zingers in as if he is in his late 60’s and been using them all his life. In a Sinatra like way. He is just so remarkable and so freaking smart.

Do you have a child that is like an “only child?” Or could have been an “only child” very easily? I’ve met so many families who talk about this with me. I know this is common. That child who just wants to hang with the adults?

I’ve noticed that “only child” children, at least the ones I know of, are always really wise and have exposure the rest don’t. Only child children are privy to things. There is no “younger child” to always be concerned about speaking in front of and you would rather not put your “only child” by him or herself when you need to talk “adult. ” They tag along for the ride. Some of our best friends are only children. They are pretty wise.

Benno is that child. Don’t get me wrong he loves to play with his brother and they really get along well, he is just that child that thrives with adults. He loves to be with us. He loves to snuggle. Hear that future spouse. You have the cuddliest person ever. Your welcome.

And boy do adults love him. How can you not? He is the room. He doesn’t light it up, he is it.

But I can’t even imagine what it must be like in there, in Benno. Steve usually can understand him a bit better, but even Steve can’t fathom it now.

This is a lot to process. 

Benno has an anxiety disorder. This is a real thing and I don’t understand why we don’t talk about these things out loud. I just don’t. Maybe because I have a different perspective? Maybe because I got to work with large sample sizes of student populations that I feel more comfortable to talk about such topics? I know how relevant it is.

How VERY likely that anxiety is somewhere in your family. Its just basic math. 

The odds are…YES. 

Anxiety is the NUMBER ONE most afflicted disorder for adults. One out of twenty children and teens suffer from it. So why is this hid in shame? And why still? When we know so much about it.

Do we think its a reflection of parenting? Well I can tell you that’s bullshit. I have my own control study going, I have two kids. Jacob does not suffer from anxiety and considering what we are going through, thank you LORD for that.

So what’s the fear? 

And if this is something that so many people are suffering from why aren’t we valuing the problem? At least treating it equal to y = mx + b, because that makes into every school curriculum. 

Here’s a factoid: 

Do you know what the average graduation time is for college students (nationally)? 

SIX years. 

Yes. 6 years. Not 4. 

So keep on saving over there Nursery parents…your savings calculations are a teensy bit off. Double it. I said average. Some are taking longer.

There are numerous reasons at to why, but up in the top five…mental health breaks. Kids are having to leave college/ take time off for mental health issues. They have physical manifestations and feel their world crumbling in. Or they are simply overwhelmed and need to come home. This is very real and happening ALL around the nation. Including (if not more so) the best schools in the nation, even the one you went to.

LET’S TALK ABOUT THIS!

We need to be teaching the ENTIRE student. Equality to the mind and body. I do believe it needs to start early, but a HUGE push when children are teens and metacognitively aware. We need to be teaching them the chemistry/biology of anxiety to know how it physically manifests in the body and how to identify it. We need to expose them to all research-informed methods for alleviating anxiety which includes meditation, exercise, talking, etc. Let each child find what works for him/her/

Because what works for you, may not work for me. For example I still have yet to experience this “runners high.”

Yes…no runners high…not even in the marathon with all the cheering, I’m at mile 2…nothing. Nada. 

Its core to our mission at Mind the Gap. It’s line number five in our mission statement.

WE WILL MIND the body. We develop the whole person, teaching wellness skills with an emphasis on tools for anxiety and stress.

And I would argue that it is crucial and essential to any education. MTG IS going to solve that. That feels good to say. Ahhh…we’re going to solve that. 

Haven’t been able to say that word in a while. Solve.

We can solve it because it’s easy to solve. There isn’t anything to “cure” but rather to channel. *and this might include medications for some of you.

Anxiety is not necessarily a BAD thing. 

Steve suffers from crazy anxiety. And I won’t name but my MOST brilliant friends do too. Super smart.

Anxiety is an asset. A gift. It is an evolutionary advantage. You anxious people are more likely to live, but you need to know how to channel it. There are no predators at every turn anymore. The world is safer, but you body is still in the stone age.

I mean my husband is the freaking best. He can do anything and knows everything. He understands how his body works and can control it. So freaking jealous. And all of that is due to his own anxiety. He studied himself with such OCD precision, so he can be in control, even of his own anxiety. 

Snap.

 Literally. I just snapped in the air. lol.

But yes it can be done. It took YEARS, but anxiety can improve your performance and serve you if you have the right tools.

However, Benno is 8. What tools does he have and what tools can he realistically utilize? This is not easy and nothing to wish on a child. Nor easy to watch. It’s hard to parent. He can’t say “I’m anxious!” Instead he gets stuck on thoughts like freaking Nantucket.

Steve can’t fathom dealing with this at that age. Steve didn’t have anxiety this young. He developed it in his teens and Steve didn’t have his brother diagnosed with cancer and everything he’s known to disappear. All his plans. All of his plans. anxious people like plans.

All his plans to sail through the summer with his parents, brother, and dog.

Instead. I went away, Steve went away, Jacob went away. And his dog, Skipper went away (germs). He is completely boundless. He has no consistent structure and when we try, we fail. Something happens like that night we had to rush Jacob to the hospital.

But let me be clear. He will learn like Steve. He has no choice and we will help him. We are here for you Benno! Just like Jacob who has to kill cancer from his body. Benno he will conquer his anxiety and then…

We will all work for Benno. 

Literally all of us.
This is serious.

He has Steve’s anxiety, but he is me too. He has my words.

I’m trying to stay in his good favor, because, this day will come. I can’t promise you good health benefits. He will be a real pain in the ass boss. You will need to punch in and out, but you will respect him because he will know everything about whatever the hell you are talking about. He will know all (or build a machine that does) to feel comfortable in this world.

So today I had to prioritize in order of need and that was Benno.

Jacob is doing GREAT!

He played hide and seek for most of the day in the house. I kid you not! I could not get that kid to sit. And he ATE. He ate for all the days he missed. He ate and he ate and he ate. We have 3 more days with him. 3 more days before the next chemo. We are enjoying him, but still, a bit protective as his immunity is that of a three month old and I CAN’T go back there yet. Need a break from the hospital. So visitors be HEALTHY. The only issue with Jacob is the hair loss. He doesn’t look in mirrors… Waiting for that to accidently happen.

AND OH YEAH! Were back home. Jacob wanted to go home and poof Steve made it happen. Steve got the air tested about a billion times and we are now home. We assumed Jacob would sleep with me because of the bunk bed stairs, but Jacob just scurried up those steps so excited to be in his bed. Saying hello to each of his stuffed animals. And all of the GIFTS!

ALL of the gifts!! 

Which of course Steve let him open while I was out and he threw away the cards. Steve is on a big CLEANSE. Seriously. Everything that has nothing to do with Jacob he will throw out. No room. No distractions. We are purging, to say the least. Valuables hold no meaning anymore. 

However, one gift was obvious:)

I got some Moon Pies from a Southern Belle, Ms. Katie, a fellow sailor. Thank you Ms. Katie. Do you know what one of the songs that turned on shuffle?! You gave it to me. “Shake your booty in the name of Jesus.” I mean that song is the freaking best. It still makes me laugh as if were still at the Florabama.

SORRY SHORT STORY ALERT:

Everyone should know about the Florabama. Link provided for proof!

The Florabama is a bar on the border of Florida and Alabama and every year they have the MULLET contest. AND YES! I KNOW! You thought it was a mullet contest as in the hairstyle, but NO, mullet turns out to be a fish. And they throw that fish across the state lines from Alabama to Florida. I guess who throws it the farthest wins? I honestly don’t remember, but I loved it. Just a bunch of people throwing fish across a state line and getting drunk. Sounds like a community builder to me! We were drinking and shaking our booties in the name of Jesus. Can we do that again? Let’s bring the kids! One year from now! We go and shake our booties and throw some freaking mullet with guys rocking mullets. Sounds like a perfect day. I will mark it down. Send me the date.

I plan to LIVE so HARD when this is over.

Its hard to envision some days, but I have to start making plans. Plans of a life not like this. A life where my children are healthy and getting what they need.

And I believe the rest of the gifts were from the Friends. The greatest friends a Nightwing could have. THANK THANK THANK THANK THANK YOU ALL!

So today we focused on Benno.

Night.

I have a problem and its not healthy. It doesn’t serve Jacob. It definitely doesn’t serve me. It doesn’t serve anyone. It makes this process harder…,especially for Steve.  I don’t sleep. I only think. 

When talking to a friend the replay was: “Of course. You want Jacob to be okay. You are going to be a wreck.” she replied. 

But it’s that and so much more. 

I want and NEED them ALL to be okay. Every single one of these children. I see them. I watch them. I love them. They are mine. 

This isn’t very unusual for me, I have always had a lot of children. A lot. Not just two, but hundreds and two. 

It can be extreme. I can put my kids last. WAIT. That’s not fair. Not last. More like in order of importance of need.

This story pops in my mind.  It is the terrorist bombings of 2017 in Chelsea. The day after (or maybe the day after that) there was a strange package on the Highline right next to Avenues. NYC was on high alert. This had to be taken very seriously. We went into lockdown mode. No child could leave the building. We had to move hundreds of the children to one side of the building, packing classrooms, and sit and wait until the bomb scare was cleared (which thankfully it was).

It’s was a lot of responsibility. All of those children and faculty lives in your hand. Looking to you for directions. Making calls. Important calls. 

When I got home that night (LATE) everyone (family and friends) kept asking me “How was Benno?!” Everyone knows that Benno has a severe anxiety disorder. This had to be so scary for him. 

“How was he? Was he crying?” 

 “I don’t know. I didn’t see him.” 

Steve couldn’t comprehend it. “So you didn’t check in on OUR child?” 

I didn’t. I didn’t even check on him when it was over. 

Maybe I’m missing a gene. Maybe I’m not maternal, I treated him just like all the rest. He was one of my hundreds and two children. I wasn’t protecting him, I was protecting ALL of them. 

No. I did not see him.  The only kids I checked in on personally were the children affected by the bomb attack earlier that week, the kids that lived in that neighborhood who still couldn’t go home. They were my priority. They were the ones that I ran to. 

 I can still name them all. All 6 of them. 

So I’m having a really hard time here. 

This is my literal hell. This is NOT the place for my disposition. This is not a place where I thrive. It is a place where my soul just dies because I’m helpless. Completely helpless. I don’t have the ability to help them. And some of these children are SO SO sick. 

And I am low…really low. 

And it got lower…

I saw Benno.

I haven’t really seen him. That has been semi on purpose. So I can focus on Jacob, but also to shield me.  I know that sounds terrible. I know I have another child. But you don’t know Benno.

But I saw Benno. 

It wasn’t on purpose. He was supposed to be out, but he doesn’t really go “out.” I should have known better. I went home to try and sleep. I had three hours “off,” but there he was.

And I can’t really write about it, because one day he will read this and while I go on and on about Jacob’s strength…I can’t say the same for Benno. Benno deserves to have his strengths shown, a full picture, of the really kind intellectual child he is, but I can’t write about those things. I only write in the NOW and I only have time for NOW.

I’ll put it this way… I’m unclear which child is sicker. Which child is more in need. I don’t know who to prioritize. 

I mean I know that Jacob is sicker, but Benno…geez…Benno is sick too. Benno is unhinged. Benno is spiraling. Benno is sicker than Jacob.  Jacob is laughing. Jacob is talking. Benno is…I can’t write.

And I hit my bottom. There is just so much one person can do.

Jacob needs me. 

Benno needs me. 

When I called a friend in this desperate moment, she said “I have nothing to say to you. I really don’t. You are in a nightmare. The only thing I can say is that the sun will rise tomorrow. You at least know that.”

Well, the sun did rise and I got to start this whole “life” again. This whole nightmare. 

And honestly, I would NOT be able to do this without you. I’ve gotten some breaks from the mom show. You have sent robotic teachers! You have sent yourselves. You have sent toys. I share them with our neighbors. We all thank you. 

 And the letters! Jacob received letters from his friends from school even ones from Chabad (his school prior). I think Jacob liked the letters, I LOVED them. I read each of them three times and plan on pinning them up all over his room. And the best news! Jacob’s white blood cells finally came back up! He has immunity and he looks so much better.  So we get to leave the hospital tonight. Jacob comes home.  

Now get 4 days with Jacob and then we do it all over again. Another round.

Another day is now done. 

Only a year to go.

Please say this is rock bottom.

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

I just never understood this bucket list item. 

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

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

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

And here I am in a fucking marathon.

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

Equally plausible at this point.

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

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

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

We will do this 7 times. 

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

Surgery. 

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

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

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

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

And I hate running.