Nightwing

“I want to be a normal boy.”  

This was on repeat last night. 

We knew this time in his life would come. It was a matter of time. Turns out the time is 4 years. Clocking in at 9 years old.

Jacob’s relationship with cancer has been so different than yours and mine. And I feel comfortable speaking to you as if you have been touched by cancer because statistically speaking the odds are…YES you have. 

But Jacob’s understanding and experience with cancer are different than ours.

Prior to being diagnosed, his dad got cancer, went into the hospital, and came back cancer free 2 weeks later. That was only 6 months prior to his diagnosis so still fresh. Still a topic of conversation at a dinner party. Jacob knew the word cancer. 

Even during his own cancer,  Jacob’s relationship was different.  Eight months into treatment, Jacob whispered in my ear so a boy at the table next to us couldn’t hear.

 “I’m lucky I have cancer, look, mom, that boy is broken.”

Said boy had a cast on his arm. I even remember looking over at the boy; his mom and he were looking right back at us. I wonder if they were having the same conversation as they whispered about the bald thin boy. 

Jacob spoke about cancer with genuine acceptance and something he “does” just like your kid does baseball. Like today. It’s scan week. 

“Today your getting a line put in and then a 90-minute scan.” 

His response? “Mom I know! Your blocking the TV. Move.”

But lately, there is a new cry. A cry for normalcy.

“I want to be a normal boy.”

Cancer “ruined his life.”  Jacob has come to believe that if he didn’t have cancer he would be “normal.” People would treat him differently and he would be skinny and excellent at soccer. He reports that people are just being fake nice.  That they don’t want to sit with him at lunch. 

He is sad and also angry. He vacillates between the two emotions within seconds. 

My response was clear. “That will never happen. You will never be a normal boy.”

Long pause. Jacob’s eyes are full of tears. His eyebrows furrow deeply. 

“Have you met your parents?! This is an impossibility for you.”

Jacob rolled his eyes. Now he’s annoyed.

But I’m dead serious.

I repeat it again. “You will never be normal. That is not in the cards. And why would you wish for such a terrible thing?”

Now he’s angry and (of course) screaming (level 11). “What terrible thing did I wish for?!”

“To be a normal boy. What does a normal boy look like and do even? Does a normal boy live at sea and adventure? Does a normal boy have a bunny living in his bathroom? 

And I can go on…which I did, but it all backfired. 

He’s not Benno. There is no reasoning with him. He hates being wrong and now he is furious at me.

Ugh.

Luckily he has therapy tomorrow. I clearly suck at this. I just wish I could share with him all that I learned when processing his cancer. I want him to skip all the pain. The “What if” game you will play in your mind. It will not serve him and will torment him. But maybe its the only way to find your own truth. 

That there is no such thing as a normal boy.

Cancer happened.

And you suck at soccer, and, yes, have a passion for eating.

But you are the funniest, smartest, and STRONGEST kid anyone has ever met.

(dumping posts that I found but never finished)

May your new year embody the new reality. 

2023 is a year of breaking rules. Even writing new equations. 

1+1=infinity

No I don’t speak blonde.

I am taking issue with the “known” fact that 1+1 = 2.

Some may want to tattoo it to remember that you aren’t crazy, that you too can summon a star. That we can change mass into energy and create. 

Nuclear fusion is a new mantra for me.

Of course, I’m geeking out on the science of it and can’t stop reading about it. How one can think of this as God like? We are CREATING more energy that went in. 

It gives me hope.

2023 is going to be a good year. 

We were brought into room one today. 

I remember room one. The last time Steve and I sat there we were there for a consultation as our child had just been diagnosed with neuroblastoma. 

The room has changed along with Steve and me. All a bit more refreshed. I’m showered and in pants that zip, even washed my hair! The room has new furniture and a fresh coat of paint, and Steve is half the size he was last time we were here.  

And it’s fitting we’re back in room one, as today is a bit of a graduation day for us in our cancer journey. Coming full circle! We are meeting our new team, the” long-term care team.” Yes, Jacob finally qualifies as a “survivor” at Sloan.

This team does not focus on the cancer/ the potential of relapse.  No this team’s purpose is to oversee the side effects of his treatment. 

All the sides. 

I totally forgot about them. 

The side effects of chemo, the side effects of radiation, and the side effects of immunotherapy. How we need to watch his spine as they don’t expect all the vertebras to grow due to radiation that continues to radiate in his body. Isn’t that interesting? Chemo makes damage (like taking away your hearing) and then disappears, Radiation will continue in his body for life. The side effects are largely still unknown.  And immunotherapy…that list is long too.

There were so many sides. New things to watch. His heart from radiation may age faster, he may be infertile, oh the list. 

And all of a sudden I was back in room one hearing the “and thens.” I forgot about all the things we signed up for. All of the therapies we said yes to. All of the future decisions we made on Jacob’s behalf. And I walked out sick. 

Truly. Next day fever, etc. My body collapsed. Back to sweatpants. 

The sides are real. We can’t run from cancer. Turns out there is no “after.” Cancer will be part of our story for ever as we will always have a “side” of it. 

He alludes to before and after too. 

This is new. 

I probably should be relieved. Jacob talks about cancer with emotion. That should be “e” word (expected) right? 

Until recently the word cancer carried zero emotions.

“That was when I had cancer,” Jacob would say to a teacher in class when referring to a past event. With the same absolute fact nature as a child saying he was at “grandmas.”

“Is it a cancer day?” Jacob will ask me nonchalantly when I mention I’m picking him up early. “No, it’s the orthodontist,” I reply while brushing my teeth with the same lack of emotion. 

He speaks of cancer as you would speak about going to the grocery store.

I once told him I found that odd. 

He was confused why that was odd. I even told him that “I see a feelings doctor due to your cancer.” This stunned him. “Why?” Truly baffled. When I tried to explain… fruitless, he seems stuck on the basic premise of the disagreement, “why would I even be upset about cancer?”

At first, I questioned his lack of emotion and then I just lapsed in my gratitude for it. How lucky am I? He ran back into life as I did. No looking back. Straight ahead, making up for the lost time. He was a “normal” kid. 

But that has changed.

 He is angry and sad. 

For the first time referred to before and after. 

He speaks differently than I do about before and after. 

Unlike mine,  it is not a story of his pain. It is not a story of the trauma, of isolation.  No needles, no hospital references, make up his narrative of life  “before” or “after,”  it is only about others.

“After cancer people were different.“

Jacob feels like the world left him behind. He went into the hospital and everything changed when he came out. 

I ask what was before was like? “I knew what to do, had friends, and was popular, and cool.”

And after cancer? I ask.

“After, everyone’s changed. They don’t like the same things. The kids are different. I don’t know most of them. I suck at sports. I’m fat.

He told me that cancer “stole his dreams.”

He told me he is lonely at school and it’s exhausting pretending to try to be happy. He can’t connect with the boys in his class because he does not know how to play the games. He missed Kindergarten and first grade, he feels lost. 

And of course I’m mad at myself.  I should have noticed that he didn’t get invited too much. No playdate invites, no birthday parties galore. He wanted to come home after school. He also didn’t ask for playdates. And this is NYC! These kids are so overscheduled so I didn’t think much of it. I’m sure everyone is busy. 

And the bit of social interaction I did see…was always stellar. No issues making friends. None. He will walk up to any kid and by the end of the night has a crew of 10 hanging on his every word on any vacation. This kid is cool.

So I’m a bit in shock. He is the fattest in his class and he is the worst athlete. No one wants Jacob on their team. And at lunch people move seats. I saw it with my own eyes too. No one was mean to Jacob. The kids were beyond kind to Jacob. But Jacob stands out. I get their annoyance as he can’t play close to their level. They know they will lose with Jacob on their team, but no one was not kind. 

What did stand out? Jacob’s freaking GRIT and BRAVERYI could have NEVER done what he did. I would have not even gotten on the field. He knew how they felt and he knew he would be bad at the game. But he got on the field. He ran.  He waved. He high-fived. He pretended after each kick that he missed came out of nowhere. Slapping his head. The face of amazement.

 I see him pretending. 

He even laughed when he saw others laugh, but I knew couldn’t have physically hear the joke. There was no way with his hearing that he could hear that conversation.

I was in awe of Jacob. How he keeps going. How I held back tears and wanted every excuse to get him off that field. I had a moment too. He got injured, he came out, I said “let’s go”- but no he wanted to stay. 

I am so weak. 

Jacob you are so strong. 

I am in awe of you. 

And I write this to remind myself how LUCKY I am. How normal this is. This is not life or death, this is a soccer game. This is a story of a boy finding his way. Sure its a bit tougher than the usual child having social issues as this boy lost time, but there is an after.

. 

I’m feeling Grateful, glee, good

Golly Gee I like the letter “G”

This tiger said it best. G words are great. 

It’s crazy how one letter can change your life—just one extra sound. It can turn water into wine. 

Jacob has Ganglioblastoma Note the G. This is the benign form, the mature version of Neuroblastoma. 

About a month ago we got back scans and they were not NED. After months and months of clear scans. We were even planning on requesting from the hospital to move him to 4 months scan schedule or even more was our hope as we hated him getting so much radiation every 3 months. 

Relapse was not on the mind, but that is when cancer hits you so I’ve learned, when you least expect it. As it prides itself to “expect the unexpected.”

But when he came. We were prepared. We both took our warrior positions, Steve calling doctors, and me focusing on words with “G.” Chanting for a ganglioblastoma miracle and of course spiraling into a depression.  As the odds are high for relapse.

But I forgot…the odds don’t exactly work with this family. 

The spot in question on his scans was not exactly a surprise. It is a piece of his original, tumor that wrapped around his aorta. This is from the origin site in his lower back.

We knew that the surgeons could not get the whole tumor. They had to make the call of leaving a little behind. Jacob had been under general anesthesia for over 12 hours at that point it was dangerous and the surgeon said “it looked different” from the rest of the tumor. 

I remember being devastaed. In waiting rooms when I swapped stories with a cancer mom, you could see their breath stop when I mentioned that they didn’t get the entire tumor. Of course cancer moms our trained to not show expression and therefore, she played it cool, but I could hear it. I could see her mind racing. “At least that didn’t happen to my child.”

Even in the cancer wards I felt like the 1%. Statisically anomaly that you can’t stop watching and some scientist would love to study. 

So when the head doctor called who for the record has not called us in over 2 years, I was prepared…for the worst, but he called us because it was the best, nope GREAT.

It showed GANGLIOBASTOMA! Which yes is a tumor that does need to be taken out as it is growing, but it is NOT CANCEROUS. That is all that matters. 

So I’m feeling grateful, good and yes, GREAT.

Today I did a puzzle. I bought a puzzle with no regard to my children. No this wasn’t a present/ activity for them. It was for me. Doctor ordered. 

I’ve learned I like to fix things. I like to solve. I’m a “fixer” at least that’s what my new therapist thinks. I want to fix everyone and everything. It’s an addiction and way less fun than alcohol and there is no rehab for it, at least one that I can find. 

The addiction is real.  Big to small, my day fixing the world and everyone else’s problems has become a drug. Think education needs to change? Change it! Told your child has incurable cancer? Cure it! 

But I should be sticking to puzzles. Being a fixer is unforgiving. And I fear I’ve been sucked dry. Turns out fixing is a one way street.  

Before puzzles, I would scratch that fixer itch by taking on humans. Real ones with blood and everything. I took on my nephew that showed up at my home unannounced, penniless, and addicted to drug. Took him on. Only to find myself being extorted days later. A whiplash of pain, sorrow, and just plain fear. After all the love I gave to only have it thrown in my face. 

But I don’t draw the line of the family as I’ve learned most fixers/ women do, although they are all included to fix. 

I’ve taken on strangers’ children. Multiples of them. Yep. I’m on the other end to countless mothers and fathers calling in desperation for my help. I get calls from students at hours during the night. Sure I get the now and then “thank you for changing my life email” and that does make some of those night worth it, but lately the game has changed. This generation expects the world to stop and put them first and see “helpers” as mere servants in their individual journey. The letters come less frequently and instead I find myself speaking with mental health practioners and the police more often. Advoating for children who honestly don’t care if I do or don’t.

But yet I keep going. 

Clear addiction.

So.

Puzzles it is. 

This girl needs a rest. 

Remember that if you believe anything is possible.

Remember that even the darkest days the sun rise.

But I write in the now. This feeling. This moment. I want to remember NOW. So I write to record.

As it is this moment where I can say with PURE confidence that I have made a dent in this world. That I have brought a MOVEMENT in education where parents can demand MORE. Where students can demand MORE. Where we educate for life and the whole person. 

That I BUILT a company in a space where there has been zero disruption in 300 years with billions of dollars and institutions trying to protect their piece of the pie. Not only rooting for your failure, but trying to take down as you threaten their very existence.

I was told it was not possible. Who am I, a female elementary educator, to take on the criminal activity happening in higher education. Told that change can only happen from the top. That while we all recognize that higher education is flawed, the system is too big to change, and why would it when people will pay (take out loans) to be lucky enough to get off a waitlist.

But nope.

They were wrong. Yes WRONG.

And yes cancer moms are INVESTABLE! Remember when I was told that no one would invest in me because not only am I a mother but a mother with a sick child. That you wouldn’t make a strong founder. That I was uninvestable.

But nope. 

All of them WRONG. 

And change (lasting change) happens from the bottom, not the top. It happens from the teachers and the students saying ENOUGH. Stop pushing us into a system that has a 14% success rate that rejects the majority and does not even serve the new realities of the modern economy and world. 

No LONGER!

I did it.

WAIT.

NOPE. 

WE DID IT.

I need to acknowledge that I had major moments of weakness. There were days when I didn’t think I could take another hurdle.  Another mountain to climb after so many ranges prior. Another government agency saying we don’t fit into the qualifications of an “education” and to qualify we would need to become the exact criminal activity we are fighting. There were days I said to myself- “How stupid are you Abby. You threw your entire savings and the last 4 years  of your life into something impossible. You are hurting your family. You are traveling, not making an income.”

So Guilty that I wasn’t being the mother I should be.

And all the nights I cried to Steve the same question:  “Why is it so hard to do good?”  I’m just creating a cheaper, more valuable product that puts students health and success first. I’m not in this for the money. I’m in this for my children and yours. Why is doing good so hard? Lots of sleepless nights on that question.

Lots of days ready to throw in the towel. If I didn’t have you…MYX would not exist. 

When I was down, you were there to pick me up. My neighbor coming down and literally slapping me. Don’t give up! Or my co-founder taking the lead when I just wanted to pull the covers over my head in a deep depression resigned that the world had no place for love. That education was no different from the rest of the economy, all about the $$$ with child victims. 

But everytime I was down (without fail) I would get a text from a student. A student sharing that they signed their first apt on their lease (and yes they could read all the legal jargon thanks to MYX). Or one of my favorite texts. “Abby I don’t know how to thank you. You have changed my life. I never felt like I belonged before nor had any talents and here I am walking into the world ready!” Those texts always came right in time.

Coincidence? Heck no. We know there are none of those in life.

This was meant to be. This journey was the only way to get to here.

So a big thank you to the pioneer families who believed in this crazy girl talking to them over tik tok. Thanks for being my village as it takes a village. A village of believers. 

I didn’t cure Jacobs cancer, Nightwing did.

I didn’t bring education to reflect the truths in learning, the realities of this generation, and the future of work they would inherit by myself- heck no. A team of educators, parents and students did that.

At MYX you never walk alone and I don’t either. People believe in me.  People believe in this mission and have even invested in this mission. And I’m going to make those people (including the educators) millionaires. Just watch me:) 

As good deserves to be recognized and those people will pay it forward to make the world better. I know it. 

I have never felt so high and proud. 

Leaving this morning from MYX I can say for the first time with ABSOLUTE certainty that MYX is going to change lives and education in the United States and beyond. 

It can be done. 

It can be done.

I need to document the moment I reached the top of the dark side and was able to look back and see the beauty that was there all along, but I lacked the light to see. 

Since June is going nowhere, I’m only left with my own documentation. What worked? Why did the sun rise again? When did June lift?

Annoyingly so…it didn’t happen one magical morning. It took time. Time. Damn it. I’m sorry future Abby…I’m going to say that word, patience. Ugh. Vomit. I’m sorry. The word is so condescending. The soft “c”- the entire thing, but yes that is part of the process. 

And yes, Fuck you patience! What if you just move faster than most? Isn’t the world and others supposed to catch up? Why am I the one to have to change? But…yet patience is required, but not towards others, but towards yourself. No matter which way you parse the data nor the number of interventions I try, 4 weeks at least. You can’t stand on your head to get it to go away. Although, I know you will try!

So number one factor, time and “p” word. 

During the month smoke weed. This one is odd to many and possibly not a good one to recommend for others as anxiety orders are often exacerbated by weed for many. But weed has a unique property, it slows down time. It makes me be more “p” word. After some research, there is real data to support this response. Weed affects our perception of time. It tends to slow down time and that slower speed allowed me to heal. I needed the world and my body to slow down. 

But if I really look at my calendar and my own anecdotes, the best medicine? GOOD HUMANS and ADVENTURE. I call this new discovery “PTSD shocking GOOD therapy.” The only way to battle true depression is a BIG dose of evidence that the world is magical and good. You need to take yourself out of the “known” environment of supreme court decisions, children needing you, and bad people. Instead, go hang with people who fight for others. Listen to the stories of others and travel. Go adventure. A work trip counts—anything out of the ordinary works.

While many good humans (and the month of July) played a role in helping me snap out of this round I have to write about one.  I got “shocked” by dining with a real patriot and former politician who continues to work for this country. Together we talked about the future of our country and our youth. I got to be part of talking about solutions. And sitting next to this legend with over 50 years in politics and seeing that he still fights was inspiring and put a little light in my eyes. He hasn’t given up!

But let me be clear. Hanging out with famous powerful people is not required. I think the biggest PTSD shock therapy I had was with a homeless man. We sat for 2 hours together. He was amazed that he found a white woman smoking a joint on a park bench. We kept laughing when we sat together as he nicknamed me “unicorn” as he never knew people like me existed. He had never sat so close to a white woman before.  And what was the necklace I was wearing? A unicorn. Well that made us laugh and laugh. 

We talked about life, death, family, and faith. I asked him how he keeps the faith. How he walks the streets and sleeps in his car, yet smiles. He looked at me with pity. He looked at me with pity! Just think about that. He then said. “In your eyes I can see a life of incredible privilege, but also real pain.” He reached out to me and said “I wish I could take that pain away, but know that there is a bigger story here. You have to have Faith.” I started to tear up. And he went to hold my hand and we sat there holding hands for a good 2 minutes. And I felt a real moment of relief. I felt connected to humanity. I felt that while not homeless, this man and I share a common life journey.

Next June? Adventure and good humans! Planning ahead

I have one vote, but I think I have to throw in the towel. 

I  know an uphill battle when I see one. While I’m no hiker, I do know a thing or two about hills and mountains and this is one may be insurmountable. 

But the fact that I started such a petition speaks to the sincerity in my new proactive goal. I need to make sure I don’t do “June” again. And its easy come July to forget June even exists.  It’s so easy to forget the bad.  Nothing but negativity in the rearview mirror so why look back at all?  And for the past two years, I’ve done just that. I’ve RUN into July with vengence.

But I’m not allowing myself to do that this time. I have strategies in the works, even a petition.

What is the petition you ask that I’ve gotten one signature on? To end the month of June of course. I had a clever idea of elongating each month and swallowing June all together. 11 months. It oddly, has some nice implications for school schedules that I think may increase learning outcomes too. Interested? Let me know! You can be signature number two.

The one signature you ask? Steve? Nope. Not even Steve would go along with this plan even with so much to personally gain. He was pretty adamant that our first child’s birthday, which is sadly in June, is important. I, of course, was primed for that concern, ready with a solution. What child would not want to celebrate their birthday earlier? Win win. Steve didn’t buy it.

But I really am throwing in the towel as I’ve just learned that my entire “down with June” campaign is flawed.  Turns out our bodies keep time even without cues from the mind/ observable environment.

What? I know. But its legit.

Studies where people live in dark caves with no sense of seasons nor days, end up sleeping and being awake in cadence with the rise and fall of the sun. Crazy huh? Normally I would say. That is amazing and have some deep thing to say, but nope. This only sucks. Even if I were to pass this petition and June disapeared…this body will know.

Okay…so killing June is not a workable solution. As usual, it’s not that easy. I’ve got work to do.

I played the lottery.

Yep. 

I’m two for two so far. 

Bought two tickets and won on both.

Now I didn’t win millions, but I did turn $2 into $50. And Only proved…that the 1% life has it’s perks. The odds…are my friend and worst enemy. And when you live on the edges you get to see it all. You see the curvature of the earth and you understand that we are connected. And at times that sight justifies the fall.

I’m ready to put this episode behind me ( knock on wood ). I’m feeling much better. Still have some residual pain, but if its not so much that I can’t SHAKE OFF (like literally- shake, I’m serious PTSD women, shake it off! I have a new shake off song. It’s called Shake it Out (I’m not kidding) and its by Florence + The Machine. Its pretty awesome. Chorus- shake! It works. And thanks nightwing who sends back their weird things. I’ve picked up some tricks.

So how did it end?  I need to record what worked. 

Well time unfortuantely does play a role. No magic pill, but it seems that hanging with REMARKABLE HUMANS helps. I needed a dose of people that would remind me that anything is possible. 

I got to have dinner the other night with four remarkable people who reminded me that there are a lot of people out there doing good.