We are going into memory-making mode. OVERDRIVE. We have three months until the next scans. That is three months! That includes SUMMER. We can have a summer.
Last night Steve confided in me that all he has wished for was to have Jacob on the boat this summer and for us to be a family. For us to make GOOD memories. For us to adventure again with the wind at our backs.
My heart feels so full.
And for those who have asked what is left of Jacob’s treatment here it is:
3 more rounds of immunotherapy (and everything that comes with it. Daily shots etc). The next round is this coming week. However, the rounds get further spaced out after this round!!
Then we go into the vaccination process (which isn’t a vaccination. I’m boggled why they call it that. There is no cure to neuroblastoma). That is seven shots spaced over a year that have helped bring down relapse rates so very thankful for this new drug.
Thank you all for the flicks, prayers, and love this week.
I hated that phrase. It would illicit a good eye roll from me every time.
And I heard it a LOT. Even cancer moms would say it to me. The trauma of scans and life in the hospital will become “normal.” It will become easier. This was a ridiculous thing to say from my perspective. How could waiting for scans that will determine your life become easier? And would you please shut up! You have no idea. Want a new normal with a black eye? That I can help with.
But they were right.
They were right.
Sigh.
Sitting here right now I realize this. Today is a scan day. I know I am supposed to write AHHHH, but that is not how I feel. I feel perfectly fine. Not happy of course, but I don’t feel like jumping out of my skin, crying, or running for the door. It is just what I do. Even knowing that the possibility of relapse exists, I am fine. I know that I can’t control life. I know that tomorrow is not promised. AND I know that I am prepared.
It’s pretty remarkable how the human body and brain works. How sustained trauma becomes a baseline. How what is “big” is determined by what you consider small. How everything is RELATIVE.
Just yesterday, Steve forgot to tell me that our apartment in New York flooded with 3 inches of sewer water. So gross. When he finally remembered, he told me with a matter of fact tone. We went through the things we wanted to check for insurance and then I turned my focus back to my work meeting. Floods small. Helping children through the COVID crisis, BIG.
So if you are wondering HOW the world will work in a new normal? Or how YOU will adapt to the new normal, you will. Species adapt that is what we do. We will adapt. The issues of today will not be the issues of tomorrow as you have already resigned to the issues of yesterday.
You will try and fight it. You will. You will try and push your old life into the new one. That will be a phase. But that will end one day and you will see that the trauma feels less.
Right here in the room of waiting, it feels less. It feels like an ordinary day, because it is an ordinary day. It is my normal.
So yes…the new normal is a TERRIBLY annoying thing to be told, but I’m here to break it to you, it is real and guess what?! You will be okay.
I’m married to a pessimistic realist. He’s pretty much the killjoy of any party.
Excited that the growth curve is declining in New York? Oh, Steve will kill that. “It will be going up! The virus is mutating.”
Love how kids are making masks? Steve’s got ya. “They are using improper materials. Who’s teaching these kids?! Are they trying to kill people?”
Excited about potential vaccines coming quickly? Steve: “I wouldn’t bet on that.”
Thinking that the world will end up in a better place? Cue Steve. “I would start hoarding ammunition.”
Oh he is so much fun!
But don’t feel sorry for Steve. Oh no. He’s not depressed nor upset. He is prepared and ready. A true operator collecting data to move his next piece in the game. And honestly, we have spent a year playing this game, fighting for lives, this is just another battle in a long-drawn-out war.
I too am a realist. I like data. I like to read studies and all of a sudden my world is flooded with graphs. I understand that this is very real. That there will be a new normal. However, I would label myself as an optimistic realistic.
Even through all the shoes that have dropped this past year, there is one truth that I learn over and over. That humans are good or there are more good than bad. Look there is you. And when I forget I can look at my flair.
And maybe the pain is for something beautiful? I sometimes think that this year will define our family and set it on a path for greatness.
What if the same was true of the pandemic. A huge wake up call to humanity to remember what it means to be human?
So I post this video to remember it. I post it as it does feel like the mantra of the optimistic realistic.
I am worried about Jacob and also at my wits end with him. It’s a strange place to be. It’s a strange place to parent. As you know he has been through a lot, but also he is six and driving the rest of us INSANE.
And everyone says…you know…the “E” word. And I get it. He has had quite the year (dad’s cancer and then his own) but we all need Jacob to bring down the noise a bit. We all walk on eggshells around him. Worried that he will lose it. Just pointing out to him that his number 6 was backward in school, was an hour of screams and tantrums.
I’ve talked to doctors. I’m not rewarding nor giving attention to negative behaviors. I really am not. Ignoring is really the only option for survival! And therapy is just not possible right now with the virus and teletherapy is a disaster.
But the picking is getting worse. Jacob is mutilating his face and fingers. So I looked up this picking and spoke to some experts and there is was… the A word. ANXIETY. The number one most prevalent issue in society, but yet no one talks about it.
And we realized. I’m on Lexapro, Benno is on Lexapro (anxiety disorder diagnosed at 5 years old), but yet the child going through cancer NOTHING. Jacob has never come off as anxious. Angry yes, anxious? Never. This is a kid who can sit in a machine that closes in on him and stays still without a problem. This is a kid who thinks he is “lucky” to have cancer.
Just last week he asked me while skipping down the hall if I think he had cancer for years before we knew it. Before I could answer he did. “I don’t think we will never know that answer. Do you want to play?” And he launches straight into Snuggle Puppy, his favorite. Even today he was ranting how lucky he is that he had cancer. “I got to meet the Imagine Dragons.”
But is that what is really going on inside that brain? Who knows!
It never crossed our mind that he could be anxious. It looks so different than Benno’s anxiety which is clearly about fear of things new and anything that may seem dangerous (which can be anything from a train to a birthday party). But then I think about my anxiety, which I didn’t understand was anxiety until I was 36 years old. It is not like that. It is rather racing thoughts, etc. I don’t fear much. I am perfectly willing to partake in dangerous activities. Bring them on! So its clear anxiety comes in many forms.
So today Jacob joins the club. Today I medicate him and the decision is PAINFUL even though I know logically that this medication is not the end of the world and has no long term sides. That this is a true gift to give Jacob who has had such a tough childhood and that there is a high likelihood that he may have needed it regardless of circumstances due to family history. But it’s hard. I reread all the studies I did with Benno. Looking for long term health concerns even though I knew that didn’t exist.
And its funny. This is a kid who pops narcotics like candy when in treatment, but the idea of getting him help for his anxiety is full of shame and second-guessing. This I second guess.
So I share this story for anyone else who is considering a medical route for their children’s stress and anxiety, especially during this time. You are not alone.
I always write about how I am feeling, but now I can’t do that anymore.
It’s just an endless cycle of pity, guilt, and gratitude. REPEAT. REPEAT. REPEAT.
STEP #1: PITY. I wake up with a pit in my stomach. So frustrated by the reality of my life. Upset about so many things. That I’m still hunkered. Going on month 11 and it’s SO SO loud. Jacob can’t get his hearing aids because the clinic is closed until May 15th and who knows when we will see them after they open. Then I think about how I lost my business because I couldn’t run a company from the hospital, but that LITERALLY, everything I predicted is happening in education. And I may miss out on helping this movement. That men can hole themselves up in offices, but I can’t. Everyone wants mom and when your mom happens to be a teacher, it is hard to argue that I shouldn’t be the ones teaching the kids.
I could go on, but what is the point. It just spirals from there.
UNTIL…I move to step 2, Guilt.
STEP #2: People are dying! How dare I complain. We have our health AND wealth. We are SO lucky.
Then I am forced into step 3.
STEP #3: GRATITUDE. Thank you thank you! Thank G-d we still have our jobs, thank goodness we didn’t just get Jacob’s diagnosis. Thank the lord Jacob and our family has remained healthy.
And REPEAT that cycle all day long.
So I just stew. Stew in my thoughts that go from pity, guilt, to forced gratitude throughout the day.
And now today I got the call that they are moving up the scans (AHHHHH). That this week Jacob will get new scans.
STEP 1 (PITY): I’m so scared. Relapse is very real and I know of boy Jacob’s age with the same diagnosis that relapsed after 3 months. While everyone is complaining about homeschooling etc. Try doing all of that and add being in hospitals. Having to split your family a part to keep everyone safe. Having to expose your immune suppressed kid to a hospital during a pandemic. Oh and don’t forget that it can kill your husband who has one lung.
Moving on…
STEP 2 (GUILT): I start hating on myself that I am complaining at all. What if THIS was the best moments of my life? What if Jacob relapses and here I am complaining right now. And how can I complain when we are lucky to be in remission. How can I complain when Jacob is cancer-free?!!! Who knows what tomorrow will bring?
I may have pictured it differently (very differently), but hey beggars can’t be choosers. Today Jacob went to “school.” He went to the Kindergarten assembly. He was beaming. Of course, playing it cool on camera, but he just couldn’t stop listing the names.
There’s Aerin!
There’s Ryan!
Look Liam.
Hey Mira.
Hey Becket.
Jacob has been without his peers for 10 months. I know I don’t need to explain to you (now hunker experts of your own) how hard this has been. His community has existed solely to adults and machines that beep and whiz about him.
But today he went to school!
A big thank you to Avenues for welcoming Jacob back to the community. We are thrilled to rejoin you all and are THANKFUL for the incredibly thoughtful and robust Kindergarten curriculum.
Jacob will be ready to join the Avenues band. He has already taken great interest in the harmonica! And I picked up the guitar for the first time since freshman year of college. I got some practicing to do!
Did its job:) I love that all of you have started such games with your own family. That is the ultimate goal! Creating community! I get giddy when I hear of your own Hunker Games.
Therefore, we are declaring the winners of our little hunker games and ending its reign as you continue to build community on your own. We just had a head start on you all. We are celebrating our 10th month. Yes…10th month.
So please give a round of applause to…
The Quarantine Quakers who took the gold.
And a special shout out to the Gold Standard which was a close second.
Also honorable mention to the:
DestROYers
The Goodwinners
The Lambertinis
They join the top five!
Thanks for letting our family join yours. I’m attaching a Hunker Game Slide link here for you to copy the fun with your family:) Feel free to use it.
Everyone is talking about education. You included.
My favorite part is watching the private sector roll out plans for reopening. They think they have it all covered. “We will take everyone’s temperature. We will stagger everyone’s arrival. We will make rules in the elevator. We will order in the lunch daily and cover these expenses.” And then they realize that no one is coming, as their employees have kids at home with no school!
So people are scrambling to open school “again.” There can be no open, without schools.
But some schools can’t do “again” because their foundations were so broken by this pause that all that is left are pieces. People are looking at certain sectors of education and seeing them for what they really were, a rumble of rocks precariously balancing on each other that was in need of restructuring way before the pandemic. And there is no way to build them “again.” We can hardly figure out what piece goes with what now and there are definitely pieces missing (international student tuition that many institutions depend on, etc).
So now what? What are we to do? Will we rebuild? If we do, what will we build? Will it be a replicate? Or will they take the building materials and create something stronger?
Who decides when we press “play” on education again?
What if I got to press play?!
Here is what I would do…
As usual, I believe everything starts with a well-defined problem. Sure I bet you can come up with a zillion problems you see in education. Hey you are in the education business now too, but I believe it all starts with this one.
The value of a degree in the marketplace is less than the cost of the degree.
3 = 2 + 2
This is a FAILURE. The math doesn’t work. I would even argue it is criminal with real victims.
Education has a purpose.
The purpose of education is to equip the future workforce. To allow a person to flourish in society to have skills to provide a quality of life. The issue is that the current educational system does not reflect the society and economy of the NOW (or even yesterday). Our ivory towers on campuses are a nod to a time when education was not at our fingertips but rather buried deep in the “stacks” of libraries and professor’s minds. Life has changed and so has our needs. Technology has changed the workforce forever (there will be no “again”, many of those jobs in “again” are gone), and our educational system has to pivot to fulfill its purpose.
Not convinced its broken?
Wages are relatively unchanged, but tuition rises! How does that work? It doesn’t!
One vocation killed by higher education not listening to the world around it is teaching. This is only one of dozens vocations in this place. Teachers pay the same price for their four-year degree. Same price as the future accountants, psychologists, that they sit next to in class, but will make around 50K for the next 10 years. They can’t even pay back their student loans. They are forced to leave the profession. Hence the teacher shortage in America.
So is anyone on this? Who gets to decide how to move forward as colleges still strain to survive with these tuition prices?!
I’m not an economist, but I know that is a recipe for bankruptcy.
So press play here. Let’s redesign NOW for a BETTER tomorrow.
STEP #1: Realign education’s purpose to the NOW.
This may sound obvious but it’s not. The one thing education is really good at is TALKING. We are actually VERY clear on the NOW workforce and have relatively informed opinions on tomorrow. Most futurists, economists, and educators agree that the current and future workforce needs to produce flexible and dynamic thinkers. We anticipate that the future worker will change careers multiple times. We are already seeing this with the millennial generation. Meta skills will play a HUGE role in their success. In addition, retraining will become the norm. Our idea that youth is the only time for schooling, will need to be changed. Education will be continuous throughout a person’s lifetime.
We will rethink the idea of four-year schools and create schools that are backward designed from their purpose. Some vocations may need 5-year schools, some 1. We will create an education system aligned to the real world in front of us. This will be hard (staffing changes, reeducation of faculty, etc), but the time is NOW.
I believe that 50% of current higher education settings will go out of business in the next five years (I used to think 10!). In their absence, we will create schools that are aligned to a particular sector’s success and teach the hard skills needed in that sector. Private and public partnerships will be key. What has more value to you? A computer science degree from Harvard or Google? Hmmm…I believe the private sector will enter the education space to help drive the skills they need and can’t find. Yes…its true that most employers complain that they can’t find the skilled labor they need. This future collaboration will allow higher education to be informed by the actual market!! Students will walk out employable. The cost of their degree relative to the value of it. This will FORCE tuition to lower. This does not mean that a liberal arts education that teaches critical thinking is dead, we can do BOTH. Critical thinking is critical. The idea that you can’t teach hard skills that are needed for tomorrow and critical skills are ridiculous and a misguided notion.
STEP# 2.5:GAP YEARS
There is currently a huge gap between high school and college. K-12 is now currently designed to “get you in” to college. They are even graded on this skill. Parents pick schools that get kids into the best colleges, therefore, K-12 schools are driven by this sole purpose. However, if higher education realigns to its purpose, K-12 should follow and prepare kids to make informed decisions onto their next steps.
However, none of this will happen overnight. K-12 in my design will pivot last. Therefore, prior to entering higher education, students will need to have an idea of who they are and have skills to function independently.
However, currently, there is a LARGE gap in life skills of kids entering college. Due to many factors (parenting styles of today, etc), students coming into college are less self-sufficient and have record-high levels of anxiety. They also lack coping skills as many up until this point have depended on others to jump in and solve their issues (hey Tiger moms and dads!). Colleges are poorly equipped to help these students. They were never designed for this purpose and have been failing at addressing the new realities/challenges of their incoming classes. Students end up dropping out and it now takes the average student SIX years to graduate (remember that is 2 more years of student debt to pay).
Students will need the life skills GAP filled to enter the new higher education system. They will need to know how to #adult and how to cope through explicit teaching of those skills. This will help students graduate!
In addition, high school does not currently allow students to interact with the real world. Most students walking into college are not thinking beyond college. Life is full of information on a smartboard they are told to memorize to then regurgitate on a test, to then forget. It is really a game. A game of school. Turns out real life looks nothing like school! Not recognizing that its purpose is related to his/her success in the real world, most students do NOT know what they want to study. Understandably so! RIGHTFULLY SO! They have a limited idea of what the world offers beyond their game of school. Any knowledge of vocations is usually limited to the adults closest to them. In addition, high school offers few opportunities to discover and go in-depth into areas of interest.
ENTER THE GAP YEAR! A year of hard skills, independent living, and vocational exposure.
Oh and it offers this too..
I would recommend America joins the ranks of other cultures and make Gap years the norm. Cultures that embrace Gap years have seen enormous benefits (including to their GDP for those countries that have mandatory service to the country!). Students walk in ready for college and more likely to find success. This is well documented in the US gap students as well.
So that would be my press play. I would focus on rebuilding higher education and launching bridge programs for our youth to get there.
I saw the future. I saw the heavens. I saw it all.
Steve has always brought home toys. Always. He has an even “kickstarted” a few of them and I remember the first iteration of this miraculous invention, I remember it. I remember being obsessed. I remember going go on and on about it to any educator who would listen. I saw the future of learning. I saw it.
I am speaking about VR. Virtual Reality.
But it never really went anywhere and I could understand why. One, it was clunky and it only had programming that involved violence or sex, because violence and sex sells. And no educator was focused on this. AR a bit, but VR was silent.
But Steve brought home a newer version and it is “there,” but also, not there. It only lacks the most essential piece, connection to humans as learning is about connection, and it needs to be human to human. But it’s coming…
Side note: it is not just learning that is about human connection, but EVERYTHING. Happiness, identity, etc. You need people in your movie to justify that it is playing. So HUMAN connection is essential to any learning plan. The WHO over the WHY.
So I tried it. And I had the opportunity to have more professional development in education than I’ve ever had. I learned how to use my “hands.” I basically learned to walk. I was a toddler discovering the world. All I had in front of me were blocks, virtual. All different colored blocks and I picked them up. It took a while but I did and I watched them drop. I watched how if I dropped them on a corner, it would stumble to a face. I was mesmerized by gravity.
Very quickly the game gives you new toys. So many toys. It showed me paper airplanes, ping pong balls, and more. It was INCREDIBLE. I stumbled. I failed. I built a simple tower of blocks. I felt as proud as a three-year-old does. Look what I built!
And then I advanced onto a flying game. All of a sudden I was asked to jump out of a plane. Now logically I knew that I was standing on the floor, but my body seemed to not have that logic. I was sweating. I even dropped one of the remotes from the sweat. I slowly eased to the edge of the plane. I looked at my avatars to the left and right (my fellow jumpers). I looked to them for help. One gave me a thumbs up, but still, I couldn’t jump.
It took me a good five minutes to jump as my logical brain and my emotional brain competed in what is real. Truly an internal battle of what is real. I mean I KNEW that I was in my house, but my body didn’t seem to have that same information as it was seeing and hearing a different reality.
I finally jumped. I flew. I was shaking and then almost vomited from the motion.
But yet there I was still in the living room with two feet on the floor.
I share this story as what is REAL is questioned daily and rightfully so. We all believe we know what is real. We all use our senses to make sense of the world. We believe what we see and hear. Look at Jacob. He believes cancer is like a cold. He has no idea that this disease is lethal. In his REAL a broken arm is dangerous. Cancer as he put it is “lucky.”
And now we have fake news. We have entire populations of people with different REALS. Their senses flooded with a view very different than the one next to me. Even in the same house reality can be different. For example, in my world everyone (twitter, social media, news) is talking about the President’s dangerous language, but yet in my parents’ world they had not heard of his tweets like “LIBERATE MINNESTOTA!” When I brought it up at dinner a few days, they were hearing it for the first time. How can that be?! How can individuals hunkered in the same exact place, living the same exact life, can have such different views of the world? Different views of the REAL?!
And it again reminds me that our understanding of the world is so limited. That our senses are not enough. That even with the knowledge that I am in my house, standing on the floor, my brain can be tricked into FLYING and my body erupts in sweat and fear. How easily our brains can create a new reality with the information given. How we can so easily be tricked.
When things were really dark this summer… When I was living in the hospital with Jacob and left alone at night to google searches of stats of Jacob’s diagnosis, I called a friend in desperation. “What if he doesn’t make it. What if this is just the beginning? You can’t tell me that Benno won’t get sick. Look Steve, then Jacob, what is next?!” I sobbed and sobbed.
Her response: “All I can tell you is that the sun will rise again tomorrow.”
And it did.
It is truly crazy what a new day can bring. In just 24 hours your whole world can change. I think we ALL get that now.
Yesterday Jacob had a really rough round of immunotherapy. He required 4 rescues to get through it (which are narcotics to help with the pain). Post-hospital time was not much better. He was drugged and still in pain. His breathing was shallow.
But the sun did rise.
And it turns out that a new day can bring ANYTHING. Including all of this!
SUNSHINE! Finally a beautiful day in NY.
NO pain! Jacob woke up feeling SO MUCH BETTER. Ready to play.
The CHICKS are making eggs!! Our ladies are making breakfast:) YUM!
We want to be able to say our eggs are from FREE RANGE chickens so we let them run free for the first time.
And we were able to be together as a family. We found an old drone and played drone hide and seek. Steve got to save the day as usual!! This you have to see.
And Jacob got busy with some chalk
Does this look like a child who was infused with immunotherapy and could hardly walk yesterday?!!
