Nightwing

We remain in awe of Jacob. He continues to walk in. He did so last week and will again this week. 

He walks in to walk it off.

We are in the FINAL phase of treatment. I can’t believe I’m even saying that. It took 16 months to get here, but it is so sweet. This phase is the vaccine trial that has had great results in preventing relapse. So thankful to be here.

When meeting with the doctor prior to the vaccine he went to great lengths to tell us that it is very painful. This was concerning as prior to immunotherapy he never gave such a warning and that was unbearable to watch. 

The vaccine is a shot of the immunotherapy drug. Unlike the immunotherapy sessions, it is quick, but patients do not get the high dose of pain meds like when in immunotherapy sessions. “It will be excruciating and then over, but don’t be shocked if he starts screaming.” 

We were given advice too. Best thing is to “walk it off.” Walk the pain off.  Now how do you tell a six year old writhing in pain to “walk it off?” It seemed unfathomable and I was ready for a disaster.

But that is exactly what he did. He walked it off.

“Go walk it off buddy” and in that pain he did just that.

When we told him the next week we were going in to do it again?

He walked in.

And then walked off.

We will continue to do this walk for the next year. 

Jacob, per usual, will lead.

I’ve been gagged. My writing has been gagged. It’s been so hard!!!

You see…

I’ve had a secret now for over a month and every time I write I want to write about it, but I can’t. Not yet…that it is.

BUT it’s good. SO GOOD. I get excited thinking about it. So hard not to write about it. 

But I can say this…remember that rewrite of education I’ve been speaking about for the past two years?! It’s happening! 

The future looks bright for our little ones. There is another path! A path that values the personal journey and recognizes that LIFE IS THE ULTIMATE TEACHER. 

Very proud of these last months. I hope to be able to write more soon!

But I do want to share one learning. The best remedy to trauma is finding light in the trauma and then acting on it. Action I’ve found is the ultimate medicine.

I no longer spend my days thinking what you may possibly think of me. I have evolved this year in ways I never knew possible.

I’m proud of this growth. I’m proud to give my self the gift of forgiveness. The gift of YESTERDAY. The gift of letting go, but learning at the same time. Embracing the evolution of others and myself.

This last year had only one event, Jacob’s fight with cancer.

How did it affect me? It made me question everything I’ve ever known. Even the “knowns” like the sky is up and the floor is down felt questionable. Right versus wrong felt uncertain. Even my own identity I was unclear about.

Was I good? Was I being punished? Is the world a good place? Did I even want to be in it?

I went inwards. I went walking. I went to the river. I listened to music.

But mainly I observed.

I saw the world in a new light. I watched it run by me. And even though I walked it felt like I was stagnant. It was really an out of body experience. At first it looked like pure chaos. I felt sad for humanity. Just all these people in their worlds with no rhyme or reason. Running with frowns. And at first I thought that was the lesson, that there is no meaning and my search for the WHY (why all these things happen) was a fruitless pursuit that would only bring confusion and pain.

But one thing I had was time. Lots of time. Sitting. Sitting. Sitting by beds. Sitting with books.

So I sat.

And I saw something. I saw a thread. I saw patterns. I saw some order in the chaos. I wish I could say I hold that understanding now in every step, but that would be a lie. I fight for that understanding each and every day.

Especially when the world feels so fragile and “tribed” off.

But I oddly leave this year of trauma with incredible inspiration. I also leave in debt to the world and the pattern that truly do exist. The reality that there are no coincidences. The reality that things happen because they have meaning for you, but that meaning may only present itself 10 years down the road. But the WHY does exist. It is up to us to connect the dots.

I feel inspired. I feel alive. I feel unbelievably grateful.

And my path led to remission of Jacob. A gift like no other. And it led me to today. To PAY IT FORWARD.

Inspired for tomorrow.

I welcome you to this journey. 10 days. 10 questions.

https://www.doyou10q.com/

I began my journey today. I’ve done this ritual for the past 8 years. It is a true gift to myself having this log.

Please join me in this reflective process as we usher in a new year.

Can it really be real? 

How can one year be so different? How can the world change so drastically in 365 days? 

But it is very real.

And while I’m sure there is a lot to complain about, this year has been quite a ride, there is a lot to celebrate too. A lot of good in this world. 

And here is one to celebrate!

A year ago today, Jacob was recovering from surgery. A year ago today he could not speak due to tubes down his throat. But today he has one thing to say…

SHANA TOVA!

Thank you Nightwing.

How blessed we are to have each other. 

Let this year be full of love light and SOL (student of life). As one thing I’ve learned we are all still growing, adults no exception! Let this year be of life lessons that bring us peace.

I look forward to this year with you Nightwing. Let’s not only be there in the bad times for each other, but to also remind and celebrate the good:)

I think we all should rise. I’m going to start a slow clap. One of those dramatic ones. 

Or maybe this is more appropriate

Because there has been NO lack of effort here.

Standing ovation is in order!

As you can say a lot of things, but one thing I think we all agree on here. There is NO lack of effort. NOPE. There is no lack of effort from the educators in this country to do right by our kids.

Teachers- you were given the impossible. You were given days within a summer of wasted months to finally learn what was being expected of you and not only prepare in a new normal, do it in less time than you usually have. You were able to open with limited resources. You took on more roles and responsibilities than ever. And all the while with little support from our government that will spend wildly to spare our economy, but not for its children’s safety. 

And even given the lack of time, resources and extreme fear, you did what?!

Everything humanly possible.

Everything for our children.

You got creative and like the problem solvers you inspire, you became one yourself.

While my own children are not back in “school,” I applaud you.  I have watched in awe my niece’s experience. How in every class there is a 5 minute mask break where students are allowed to take off their masks, but no one can speak for fear of spread of the virus. How at lunch she sits at a table with dividers from her peers. How she can’t touch her friends.  How horrible it all sounds.

But ask her. “How was school?”

AMAZING!

And there you have it. 

Teachers you amaze all of us. You amaze us by your bravery and dedication. You make our children whole.

We all applaud you.

Last year around this time I recall attempting to transform our hospital room into a school. I remember trying in desperation to fill the void of his deep sense of loss of not returning to school with his friends by putting on the “mom show.” 

BUT NOT THIS YEAR!

Had to share some pics!

November Rain.

As we spent these last days as a nation weathering storms, I continue to brace for the “big one.” The big one with countless deaths, one being our democracy. 

You know…November rain. Election time.

There are signs that the rain is coming even sooner than anticipated. 

Did you hear the thunder as storm systems collided right there in Portland? 

BOOM

CLASH

And November isn’t even here yet, but yet here we are and instead of grabbing umbrellas, some are grabbing guns.  

I very much fear for our democracy this November. I fear Trump declaring a false election (which he has already started) and rallying his base to fight it. They will take to the streets as they will feel cheated. The anger will be real.

But at the end of the day, I would remind myself that this November will pass. That we would all return to its rightful place as the military would make sure a smooth transition of power. If Trump refused to vacate, they would make him. It would be an awful stain on our history, but democracy would prevail. 

But now…I fear that this November rain, may be December HAIL.

This is NOT getting enough press. READ HERE.

So now what?

There is a girl. Her name is June and Jacob is “in love.” 

It is a true summer love. Two “neighborhood” kids meeting up at the pool by day and running in the grass playing tag by night.

June lives about 10 boats down from us here in Montauk and everyday Jacob makes his way over to her dock yelling “JUNE JUNE JUNE!” 

It feels just like this

And then June runs out and they begin their “shenanigans” (Jacob’s choice of word). 

And it is hard to reconcile sometimes.

How the word June can change meanings in a drop of a hat. How something so dark can become light.

How June had been a word to recoil from this year as it answered the never ending question: “Date of diagnosis please?” How June was the beginning of at times felt like the end.

And how all of that has changed watching Jacob fall in love with June.

So it turns out, June is not the end, but the beginning.

Jacob & June. 

Save the date: 

WEDDING JUNE 2033

Mark down your calendars. June’s mother and I will make sure this event is off the hook:) It will definitely involve some boating…not to be missed!