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

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.

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?

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.

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.