We are on to something

Just received this and want to read it over and over. All of the 24 hr days. All of the drama. All of the days I ask myself- why am I doing this? Why am I working so hard.

This is why.

This is it.

I do it for them and for you moms.

A note from a MYX parent. I record to read over and over again. MYX we are giving a gift that is beyond beautiful.

Wow!  Thank you for hosting the call tonight.

Peter is our 2nd of 3 boys  He’s our thoughtful, fiercely independent, fun loving middle son who is the life of every event.  As much as he’s tried, traditional schooling has never been the right fit for Pete.  It was clear early during his freshman year, Peter needed to follow his own path. He’s hungry for knowledge, he’s hard working, he’s probably one of the most compassionate people you’ll meet and a traditional 4 year degree was not on his path. 

We know that people are motivated to learn differently and I’ve known a traditional college was not the best fit for Peter. Initially, I struggled with the realization that Pete would tackle life without a degree.   More then that, I hated that he wouldn’t have the college experience – a time to grow up with the safety net of your parents still in place. 

Then came The MYX.  I’ve  trusted his latest find was as good as he claimed.  A school that looks at our children’s personal growth, focuses on mental health, teaches life skills and provides access to top notch education…it seemed to good to be true.  But after hearing your team tonight, following the multiple questions Peter has peppered your group with, it seems you’ve finally developed the secret sauce.  What an exciting way to approach education! More importantly, you have my son excited about learning, about this new adventure and about continuing his path to become a happy, self sufficient, productive adult.   

So I thank you. Thank you for creating this exciting opportunity for my son. Thank you for being brave enough to challenge the historical.  Thank you for developing our young people holistically. Thank you for encouraging Jackson to participate.

I’m excited about what’s ahead for my son. If I can ever be of any support please feel free to reach out. I’m confident you’ll learn quickly what an amazing young man Jackson is.  I thank you in advance for helping to shape his future.

In sincere appreciation,

My best,

Peter’s mom

Thanks Peter’s mom. I needed that. Thank you for reminding me that my work is important and that every challenge along the way is worth this. Worth giving your son the education he deserves.


Today was the beginning of the culmination of 2.5 years of work. Today mark it down people is beginning that parents can demand MORE for their children. MYX has created an educational system that reflects the future of work and the reality that real learning doesn’t happen in the classroom, but out there in the world!

I can’t even begin to express how honored I am to be part of this team at MYX. This is a letter I wrote to the MYX family (investors and employees), but you, Nightwing, had a lot to do with this too.

So congrats to you as well!

Dear MYX family,

At MYX we help students conquer many “firsts” like leaving their home and forging their own path. The amount of “firsts” for our students will be numerous as they find their voice and start building towards a future of adulthood with the support of coaches, learning leaders and mentors.

The MYX team is also having a lot of “firsts” over the next 20 days.  We have a lot to celebrate!

Today we opened our FIRST campus, MYX Miami. Our faculty have moved in and we begin a week of professional development as we build our MYX house culture and prepare for our students’ arrival at the end of August.

Here is the team!

Eduardo (House Dean), Abby (CEO), Becca (Head of Risk Management), Jules (Chief Academic Officer), Rachel (House community manager), Kate (House Dean), and Adam (Head of Experience)

We also hosted our FIRST MYXer  with friends and family of our students via zoom. Future MYXers will happen weekly live on site where students and faculty eat dinner as a family, reflect on the week of learning, and feature outside speakers and networking opportunities. 

There are also a lot of firsts happening with our students! 

Each of our students have received a box in the mail with their MYX journal (a critical tool in our life coaching and impact work), luggage tags, and MYX stickers to decorate their laptops. 

In addition, while our students are not physically on site the FIRST Life Hack (Travel Hack) has launched through our community platform, the QUAD. The QUAD will eventually connect all of the global MYX houses allowing students access to a  robust and growing network. We have been so pleased to see students begin to connect through the QUAD as they partake in fun surveys and direct messages to their roommates.

Please take a moment and celebrate with us. 

It’s happening!



I’ve never been a fan of the word “hope.” 

“Hope” implies a passive experience. It implies no control and wishful thinking. Most things don’t happen on “hope” at least so I’ve learned. You can have positivity. You can help manifest your future, but you can’t just sit there, it does require action. You have to live it.

So hope is a sucky word, but I pick on this word for a reason. 

As I don’t want you to be fooled by the title of this invitation I’m extending to you.

I’m not inviting you to HOPE with me for a cure to cancer, I’m inviting you to be PART of a cure for cancer. 

We aren’t going to sing Kumbaya. We aren’t hoping for shit. We are doing shit. We are curing fucking cancer, because it turns out this drug that the band funded is helping these kids survive. And “these kids,” include my own. But even better news?! It’s could help other cancers too. 

Isn’t that incredible?!

Actually, it is very credible. This should not be a surprise. Of course the Band would do it. 

What band?

THE BAND OF PARENTS. Because nothing stops parents. We run through walls.

So come be part of us running through more walls and getting a step closer to curing one of the deadliest pediatric cancers and then go after the rest of them. 

If you can’t make it to the event- remember, you can still be part of it!

Zoom with us and help us raise the money to keep this research going!

Join Zoom Meeting @ 5:30PM

Meeting ID: 917 916 6527
One tap mobile
+16468769923,,9179166527# US (New York)

We not me

All your life people have commented how “smart” you are. That you are fast on the uptake. That you are quick to get things. Clearly those people don’t know that you at all. 

Or maybe they are unaware of your memory, which is lacking…to say the least.  

Luckily you left yourself notes. Notes to remember that PTSD swings will come and go. That it will get better, which it has. 

But yet…you knew yourself even better than anyone else, some things needed to be branded. Literally branded. Notes would not suffice. This has to be premament flair. You needed daily reminders. 

I got Nightwing branded onto my skin. A tattoo. Something laughable even months ago to consider. And it’s true everyday that I see it. And everyday I remember, I lived through that. I remember Jacob’s cancer.

I can’t give my old self a hard time as she tried her best, but often drawings need labels if they are meant to remind yourself of something. A image can be interpreted without a good label and I’ve been looking at it all wrong.

Luckily I recorded WHY I branded myself so I got a good reminder. 

Nightwing isn’t a reminder of cancer, it is a reminder of you. It is a reminder of the village. It is a reminder that while “rare” you are, you are not alone. It is a reminder of the notes, the packages, the love, the prayers that got Jacob home to us. 

NOTE: Next fall- got to get some labels for this tattoo. Something to remind myself this is not a testament to cancer, but a testament to love. 

I have what I need. I have already collected the resources I require to do good in this world. I don’t need to look out, I need to look at my right forearm. That I have not only have a village behind me, but an army. 

That Nightwing comes in different forms. Sometimes from your family, friends, but even strangers can save the day as light always outshines darkness.

For about 3 months I have felt very betrayed by the universe. I do believe you get what you give and I was working so hard to give. Give. Give. Give. I had plans. I had flags to plant. I had goals to achieve and nothing was going my way, until I remembered why I branded myself. It is not about me. It is about US. 

I cannot do this alone. I was never meant to. This is a TEAM effort.

So universe do your thing, let nightwing lose on the world and WE will make it a better place. 

Till Forever Falls apart

Dear Steve, 

On this 11th anniversary that again we let pass, not because we don’t have something to celebrate, but everyday we are lucky or unlucky  to have had a need to acknowledge our commitment to each other. Everyday we have a real action/artifact to know that we are till forever falls apart. As each and every morning…

you’ve got me and you know

That I’ve got you I know

We have been through a lot of “rare” and “odd defying” things in the directions of both extremes. We lived in horror and trauma for months at the time, and we also scouted across the world with no agenda but what was right ahead of us leading to adventure that only others dream of. There has not been a day that we have not lived and  not been there for one another. We truly exist as one, because we both know 

you’ve got me and you know

That I’ve got you I know

Often people say there are  “no words. ” No stanza, no phrase in the world that would suffice to showcase their love.

That’s BS

One thing I’ve learned is that the human experience is more similar than different. That even when “rare” things happen, you find other “rare” individuals with these stories. That even oceans away there are humans experiencing what feels completely unique to you. That love while unique is a shared human experience. A beautiful one. One that we should try to share more, as often we only see the pain.

Therefore, I do believe there are words out there that can express what I’m failing to. And you know how finding words to describe the inexplicable is my favorite thing to find.

AND you know that my favorite medium of expression is dance.

When I found this…I cried and cried of such happy tears.

STEVE- Please watch. YES talking to you ADD boy who claims multi tasking is a real thing -when we know science has proven otherwise…we will continue that debate later.

This is my dance for you.


I feel like a couple so crazy happy stranded in the middle of no where, but dances away. Even in the hospital on dark days, this dance sums up how I feel when you walked into the room. When you and I conquered together.


Because you’ve got me and you know That I’ve got you I know

I swear that I’ll be yours forever

Til forever falls apart

Me, Ashe & Finneas

The pact

I made a pact.

With God. 

This is the second time I’ve done such an act.

Therefore, while it wasn’t my first foray in negotiations with “the one,” it wasn’t a regular event.

Only once before and this pact has remained secure with only one minor hiccup (Steve’s cancer). Otherwise, solid. God came through. Lines of negotiations tight, everyone held up their side.

Pacts with God have not been my norm.

 I know others are more confident in these. Not just some, but  the majority spill into pews on a perfectly good Satuday/Sunday when having a lazy day with reality TVwould be easier. This factoid has never been lost on me. More people believe in God than those who don’t. But a large minority also voted for Trump, so…you can’t take mass appeal as an indicator on its own, but this is not meaningless data.

Noted. People. The people have voted. God wins.

I’ve always been an agnostic. That is scary to admit. I fear God could strike me down and take away miracles it has bestowed me by even writing it, but please know that I’m not an atheist.

 Now that is a stupid position. Hedge your bets dude. Agnostics understand that betting against God is just as potentially dangerous as betting on it. We are Switzerland just looking to make an informed choice. Not denying your data, just not making a choice.

So I hedge bets. 

Until I didn’t. I created a test, the first pact. The one I made at the wall in Jerusalem. I said God you find me my soulmate and I won’t eat shellfish or pork again. Show me your miracles. I remember saying that. 

I remember crying it.I remember begging after two failed engagements, one that was quite abusive.

And I remember being super clear. We need some key performance indicators (KPIs). No blind faith here. So we need metrics. I gave God six months to find my soulmate. 

I met him at four in. God works fast. 

And then I made another pact, 7 years later.

This pact was said in a hospital room around 4AM on what I’m sure was a Monday, as everyday was a Monday there. But I knew a promise of giving up shellfish and pork would not be sufficient.

God, Save Jacob, and I will save the rest. I will devote my life to all the rest.

So for the rest of the year I sat with Jacob in the hospital, and I plotted. I had to solve pediatric cancer. Clearly this was a big lift. Sure this pact was a longshot, but I would do anything to save my son. 

And for those that remember I dug deep into the past. To understand the enemy, cancer, you needed to know its story. I looked with a particular eye, when has there been GREAT accomplishments in this lifelong fight (cancer has been around since human existence). Why such a stalemate? Why not enough progress? You realize we have people in space right now on a travel cruise?!

I was aware that money would play a large role. I’m sadly no idiot.I learned through my research that the best times in cancer research is when public opinion is obsessed with it. With so much happening in the world at that time in the hospital (elections, North Korea), how could I get people to put cancer first. 


I had a PR problem.

I needed to reinvigorate the mission. It had to feel like putting a man on the moon. Yes. We’re going to plan flags. I needed people turning in. I need the world to stop and take a look at cancer.

I started planning an event for the 4th of July 2020. I was in contact with performing artists from that hospital room. I was contacting camps across the country for the largest flash mob of children all dancing to bring attention to this cause. And I was inviting hospitals to plant American flags with dates and goals on fields in Brooklyn near the Macy day fireworks. Putting some KPIs into cancer. 

Planting flags that by 2026 we would beat Neuroblastoma etc. I contacted Macys to help! To make one entire song of fireworks to the song the kids could dance to across the world and make them all gold for the color of pediatric cancer with red, white and blue sprinkled in.  America was going to cure cancer. Just like America went to the fucking moon first. Side note : Macy’s has no interest, but I kept hounding them. 

And then Covid happened. All things stopped. And I also realized something even greater.  I’m not a event producer. I’m not a PR person. I’m a freaking educator! 

But I couldn’t give up. Jacob was in remission. So God is up on me. I’m in debt. I got fucking work to do. I got to go.

What can I do?! How can I help save cancer? 

And that led me to creating a business. One that made money and ALSO leveraged my talents to help create a generation that would tackle these problems. And all the money I would make, I would give to cancer. 

And everyday I wake up with that one intention. 

And everyday I wake up I have to deal with the reality that not everyone else moves through the world with the same intentions. That money and power is more important than children. 

So I made a pact and I may not make good on my end. I’m scared Jacob will get sick again (which I know in my rational head is a ridiculous- even if God exists, rumor has it he/she is “good”). 

And I feel like an idiot for being so naive. That I could do this. That I could save them all or even get enough people interested in helping me do it. 

I turned 41 yesterday. I spent the day crying. Crying that it took me 41 years to learn the biggest lesson of all, the world doesn’t give a shit.

The beverage aisle

If higher education was an aisle in the grocery store, it would look like this. 

Colleges in a can. While each can has a unique identifier that attracts people for different reasons, cans they are. 

They each have 

  • The same amount of product, 12fl oz on liquid
  • The same Ingredients  
  • The same cost

In college terms:

  • They each require 4 years of study (although the average graduation rate is now 6 years)
  • The same approach. They are all formulated on the same premise. They each have quads, they each have the “poly sci” building, etc. They all are based on the same pedagogy, read any school’s mission statement, it’s the same formula. Pay attention to the HOW, I’ll even bold it for you. The mission of Harvard College is to educate the citizens and citizen-leaders for our society. We do this through our commitment to the transformative power of a liberal arts and sciences education.
  • The same cost. No matter what you major in. No matter what your hopes and dreams are, you pay the same.

And like colleges some cans of coke  are more rare than others. Still looking for the”Abby” Coke can (anyone have it?!) However, how rare or common, on the inside, they are all the same, a can of coke!

But as Coca-cola and others have discovered. One product does not fit each consumer’s needs. Consumers needed more choices. Some want/ need more liquid. Hence, the expansion of its product to different sizes.

In addition,  it turns out we choose our beverages to satisfy specific needs.  That not everyone drinks for the same purpose. Some look for caffeine, energy, sweetness, refreshment, etc. Enter coke zero, and even coke infused with vitamins! 

And of course, Coke recognized that not all coke’s are equal. The price needs to reflect the individual product (size and ingredients). Even prices fluctuated as to where the beverage was sold. They differentiated their products to meet the market. To serve our drinking needs.

This may seem common sense to you. It’s not your first time down a beverage aisle. 

I find the beverage aisle beautiful. It is quite remarkable! Look at all the choices. 

And new categories continue to arise. Almond milk didn’t exist a few years ago and a dear friend of mine just invented a new beverage. Turns out that hard liquor seltzers are not only in demand, but there are customers who are looking for ones infused with electrolytes! What will be the next beverage?! Who knows. But we can bet there will be new ones to address the new needs of drinkers of today and tomorrow. 

But yet, when it comes to answering the call of helping our children find their purpose and future livelihood? Coke for all.

The current model has one product to meet all needs. 

  • 12fl oz Coke for Sara who wants to be a social media manager,  that will be $1.50 please
  • 12fl oz Coke for Ethan who wants to be an app developer,  that will be $1.50 please
  • 12fl oz Coke for Faith who wants to be a traveling nurse,  that will be $1.50 please
  • 12fl oz Coke for Brad who wants to be in cryptocurrency, that will be $1.50 please

If only it was really $1.50. We all know the reality. It is $100,000+ with a side of debt. Congrats Sara, Ethan, Faith, and Brad you have graduated and off to the world you go. Just ignore the ropes that tie you down, you can still run right? 

And let’s be clear that college debt is not just a student issue. I’ve spoken to three students this last week who can’t afford college because their parents went into too much debt with their older sibling. The price of college doesn’t just hurt the student, but the entire family.

And no matter what your earning potential is on the other end- you pay the same. How is that fair? I went into education, my peers went into finance, but yet I pay the same?! I have 1/18th the earning potential they do. My classes did not require labs nor fancy spaces like auditoriums, but yet I paid for it all. Actually I was given no transparency into my tuition. Just one lump price. What was I paying for?! What part costs $200K?

In addition, there is no difference in amount (time spent in school), ingredients (4 year college requirements to a liberal arts degree). Don’t get me wrong I’m a fan of a liberal arts education. I am a graduate of one. That said, I am one of the minortiy (14%) that are successfully served by this model (and that number is SHRINKING). 

 And it must be said aloud that there is no research behind 4 years being the optimal learning time.  Nothing. It is arbitrary and with the increasing popularity of the 3 year degree and micro degrees (coming from Harvard & MIT) it is clear that the secret is out. Four years is random and people are beginning to question it, including the students!

Just maybe not every outcome requires the same amount of time?

 Wow! How revolutionary!

So- I challenge you to name a product that can make you a successful astrophysicist, a photographer, a social media manager, a nurse, a basketball player, a content creator, a writer all in one place, for the exact same amount of time and money. Each of those careers and the skills to find success are so unique. So different. 

And remember that this can of coke sold to all has only a 14% success rate of successfully quenching thirst. 

Only 14%! But yet- coke for everyone!

It is imperative that we create a new category. We need to give choices.  We need to personalize learning to meet the individuals. We need to take a lesson from the beverage aisle.

And the best part of it all…do you remember one coke from another? Most likely not. Just like you don’t remember anything from your classes. I know this for a fact as I spent years studying it. You do not recall much from your college classes. A generous estimate would be 10%, but most likely single digits. 

But what do you remember?! You remember college well. You probably are smiling thinking about those years.  The experience! You remember the dorm. You remember the friendships. You remember being on your own for the first time. You remember getting your heart broken. You may remember a professor that said you have talent. 

And that is why I only remember the cokes I’ve drank or purchased in a speciality “named” can. I don’t recall a traditional coke at all. As we only connect and recall things that have meaning (that is just proven fact on how our memory works). The experience is the meaning. 

The experience is crucial. 

So I created a new category with the learnings of the beverage aisle. 

Now imagine this parent…

Your student is  treated as an individual. Not as another “freshman” Your student gets a customized course list based off of his/her interests and constraints (time and money created  next to an expert whose pure job is to help them find their way. They may need a year, they may need four. It depends on their goals and talents. 

This personalized course list has immediate returns on learning.  We can actually expect a few things, but the most important one is engagement! Turns out students need a WHY to learn. They are more likely to complete things they care about.

Duh. It kills me because it is so obvious, but yet schools continue to teach without it.

They need to see the meaning and the answer “just because” or “because it is required” does not go well. We know that.  Majority of students drop out after freshman year. They spend their days in seminars, requirement classes, and in their own words “I just felt like I was throwing money down the drain. I was not getting closer to what I wanted to do.” (McKenzie, 20 years old).

And when you stop being a “freshman” and control your learning you also control the price. Let’s look at McKenzie’s course load this coming fall at MYX.  She is taking a course from each of the following universities. Each course picked because it is the LEADER in that particular skill she needs to write screenplays. That is what McKenzie wants to do. 

How much do you think that costs? And how much time? 

Come on guess! 

$425 and ONE semester! 

Yep. Welcome to the future of higher education. 

BUT BUT BUT! We know that class is forgettable. That is a fact. So how can we change that to make it memorable? To get a stronger return on an investment.

We use what we know!

 People learn from doing!

So what is McKenzie going to do- she is coming to the MYX to get the experience and also the opportunity to apply her learning by getting the opportunity to write for a script and work with a screenwriter. She walks away with not just the skills, but the experience too.

And the best part is its low risk and high reward. McKenzie can try this vocation on and see if she likes it for a total of $8,425 (room and board + classes). She won’t have the issue of the “sunken cost fallacy” that is rampant in this country. Students staying with majors they hate “because they already spent so much time and money and its’ too late.” McKenzie can make an informed decision. If she wants to roll those credits into a full degree she can. She has course completion credits from the top leaders in the field. Or she can get out there and shop her writing around as screenplays are not chosen on certifications, but on words. 

And before I drop the mike here…there is more.

McKenzie gets for slightly more than average room & board at college (average is $7500 per semester, MYX average $8200)…

  • 1:1 life coaching where she will walk away with a purpose plan on how to execute her dreams
  • Life Hacks Course: McKenzie will learn everything from financial literacy to how to change a tire as there are skills are required to be independent, but yet, schools don’t see the need to teach
  • Live in locations that inspire! #1 biggest academic intervention is study abroad and gap years. Those who study abroad and take gap years outperform by more than 1 standard deviation.
  • Be one of 100 instead of 1 of 6,000. 
  • Weekly dinners with speaker series to network

AND MOST IMPORTANTLY. McKenzie will not be online in her parents basement, but living amongst a community of peers.

She walks away life ready.

Feels obvious to me.

There is a new beverage in town, it’s called MYX. 

Come join our mission.

Contact me: abby@themyx.com

2 steps forward, 1 step back

Two steps forward

One step back

That’s the choreography of this dance.

Yesterday was a VERY good day. I felt myself for the first time in a long time. I had energy. I was able to function like myself, multi-tasking even!

Then today. Woke up with crippling anxiety. My entire body pumping full of adrenaline in my sleep. No dreams can I recall. Not one. But my body feels like it woke up from the scariest nightmare of all.

The “better” trajectory is one I’m not familiar with.

Linear growth has always been the graphs I’ve studied. Learning is linear. There are plateaus, sure, but it is rare that you go backwards. You don’t lose learning.

But these graphs look like this

What are Technical Stock Charts & their Types | Kotak Securities®

 Going in the right direction, but not a smooth ride.

Tuns out PTSD is anything but linear. It zig zags in unpredictable patterns that is until you zoom out.

And then you see the dance.

2 steps forward

One step back

Anyone else thinking Paula Abdul? Although she sang of a different dance. Two steps forward, 2 steps back- now that sounds terrible. You should fix that choreogrpahy Paula

But I include this video because of the tap dancing part. I watched this part over and over as a kid.

So I prefer my dance.

It is definitely getting better. Today was a step back, but the 2 steps forward will reign again. 

But need to record my positive. Only focused on the bad. 

If only I had the time.


Here we are again!

History repeating itself.

Deja Vu x2

Life on repeat over and over. 

And you know how I feel about “again”

I know I’m not the anomaly. Sure I’m quirky, but this is just a fact. We are all on repeat. The entire earth has been playing this show in repeat. Over and over as it repeats itself. Even if you have “rare” things happen, you find out that this is someone else’s story too. Heck- I saw a whole floor at Sloan Kettering hospital with my story.

And the world is not different. 

The same story, the same narrative. Sure the names change, the weapons change, but nonetheless we’ve done this all before. There is nothing special about our plight. It is still the story of one civilization in arms against another. Another story of a hurricane that came out of nowhere. Another story of love lost. 

There is no new narrative, just new characters.

You may take issue with it. That you are not doing things again, but I bet you are. Just record it. You will see the patterns. The same behavior again and again. I have a running document and here I am. I even try the same things to get better.

I went fast. 

Fast helps. 

When your body has been living in fight and flight for over 2 years, it takes a lot to feel. 

We did it again. We stole away Steve and I. It was a complete fog. We could not see 20 feet ahead of us. We had to use GPS even to know which way was home. 

And we sat in our dingy. We sat bobbing in the fog. Just the two of us. Completely alone and I had one request FLOOR it. FLOOR it. And stupidly we went. Blaring into the fog. At any minute capable of running into something or falling out ourselves. Irresponsibly fast. 

It felt like a novel ride, but I know better. 

I’ve been here before. I’m know it for a fact- I recorded it

But there are moments that are frighteningly the same. So eerily similar. That it even startles this girl.

And there it was…we have been here before. The location different, Greenwich that time, Montauk this time, but yet the same need- to escape. The same wish- DANGER please let me feel again. And the same ending- a sailboat in the distance. Just sitting there in the middle of a body of ocean, surrounded by fog. 

One could say it’s a coincidence, but we all know those don’t exist. 

Those aren’t real.

It’s just life on repeat. 

But why? Why all the repeat? 

As an educator I have a guess and it is just that a guess. But maybe because that is how we learn. Mastery does not come from one experience, but from many. 

So how do you stop the repeat? TO LEARN. To not allow AGAIN.

So I take notes and I read my notes. 


I have seen such pain.

Put mine aside, I’m talking about the others.

I have lived in a pediatric ward where every day I saw families with children very ill. I saw the clowns that came in each day to make the kids smile. I saw the prayers. I saw the strength of women that were able to walk in unwalkable situations. But overall, just incredible pain.  Mountains and years of it.

While I know this would be a painful experience for many, but for me…I was living in a personal nightmare.  A real life torture chamber.

I mean I was a freaking teacher. I was a principal. My career is in helping students find their purpose. I think we all know how I feel about kids. And I found myself living around children in great pain and suffering. 24/7 for years.

And I could not help.

I could not help.

I could not help.

At first I tried. There was Joshua the child who had relapsed 3x and still could not read and was 10 years old. I thought I could be helpful there. I can teach him to read. That I can do. But when? When Jacob was getting a blood transfusion I tried once, but Joshua was in pain and in no place to learn. And it never worked out.

And I watched his dad alone in the hospital. We spoke rarely. How can we? Turns out sitting all day is a busy job. Sitting next to your child getting a blood transfusion for 6 hours is a big job. It sounds ridiculous because you literally just sit, but there goes the day.

And it wasn’t just the pain that was killing me. It was the guilt.

I had so many resources. I had friends coming in, I had family sitting there next to me. I even had a husband! Not all the women living there had husbands. And even if they did in theory have one, they couldn’t be there in the “sit.” Most families were seeking treatment away from home. Families split. Mothers in hospitals with their sick child, while the rest of their children and husband were states or even oceans away. Having a spouse is huge. And only a year before that wasn’t obvious to be true. Steve almost died too.

So I sat. 

I sat while I heard a family mourn their child who died next door.

I sat while Jacob writhed in pain.

I sat while we celebrated holidays that came and went with the ward dressed up with the matching themed streamers. Red for Valentines day, orange for Halloween. The walls colors changed, but the sit stayed exactly the same. 

I sat, because that was all I could do. 

I sat to wait. To wait for news. All news that was completely out of my control. Making the sit that much more excruciating.

However, inside there was no sit. There was vigilance, there was constant pulsing of energy.

And that is what PTSD. It’s the energy. The energy of being in fight vs. flight for years that your body doesn’t know how to be without that adrenaline. It only knows how to sit with a fire through your veins. 

And while life continues and we left the hospital, my body still is sitting. It feels exactly the same. At times I swear I can feel the chair. I can feel the material of it. This is my body’s new normal. In constant panic. So calming it down is really a lot of work.

It will take time. So quick update: Ended ketamine therapy. It did not work for me. That is NOT to say it can’t work for you. The studies are SUPER promising with PTSD. Really promising. But sadly not for me.

I am trying the following:

  1. Being kinder to myself- for example I woke up bad today and instead of getting frustrated and crying, I just laid there and let it be. Thanks Lady Gaga!
  2. Yoga- I hate yoga. But it makes sense for my body stuff. So trying that.
  3. Massage- trying this. Too early to report back anything
  4. Breath work- trying that next week
  5. Writing AND publishing (thanks Gaga). I have a lot of writings to finish. I need to document this to learn from it and publishing is CRITICAL to getting better.