People ask how we are doing? 

Where are we? 

How are we?

Answer to all of these question is “hunkering.” We’re hunkering down. 

We are in the cycle of chemo where Jacob’s body is killing the tumor and everything around it. We are in the cycle where Jacob is losing his cells, white, red, and platelets. 

The game now is to keep him out of the hospital. That is our soul existence. We are trying to keep him out of the hospital. And when I mean hospital, we still go every other day as he needs transfusions of blood, etc., but we are trying to not be admitted. 

We are admitted if he catches something, the number is 100.4, a temp of 100.4. This is not an easy game as Jacob has less immunity than a newborn child. I actually never knew that. Did you know that a newborn carries its mother’s immunity for the first week’s of life? How fascinating is that? Or maybe I knew and I forgot. Why all the forgetting?

So our days are watching a LOT of inappropriate movies at VERY loud volumes. We play Uno, we build legos and on occasion we see the sun as Jacob will request a wagon ride. He can do this. Sometimes he has to wear a mask, but the open air is okay. Just can’t go to a restaurant, etc. However, he hardly requests going outside. 

So we are hunkering. 

He is still in warrior status. Yelling his commands from his bed with the strength of a general. He is super strong and he is eating!

The only thing missing in this equation is Benno. All Jacob wants to be with is Benno so do I. 

Jacob wants little. He only requires his brother for complete perfection. 

However…Benno doesn’t want to be with Jacob. I know this is normal behavior. Benno wants to be out. Benno wants to hang with his friends, Benno wants to do “summer things.” Benno is 8. And Jacob is his “little brother.” I never had a younger sibling, but rumor has it, they are annoying. And maybe its hard for Benno to see Jacob like this. He does not vocalize this, but that is in the realm of real possibilities. But one thing is clear…no interest in Jacob.

It just sucks. Because if we MAKE Benno stay, he is angry. He doesn’t want to play with his brother. And I’m tired of bribing him. And when Benno won’t play, Jacob cries. And I get angry. SO SO angry. I want to throw him out of the house. I want to ring his little neck. And don’t even pretend for a moment parents that you have never had that moment.

 So for today, Benno is in New Jersey. We give him the choice. His choice was to go and Jacob just cries and cries.

“Why can’t I go? Why can’t I go? It’s unfair.”

And I only could hold him and agree it is unfair. It is SO unfair. I get it. It is no unfair and all I can do is validate it. And we just sat there. Him screaming and me agreeing. 

And then I showed him a Nintendo switch and it ended. The beauty of children is that everything ends. Unlike is adults they let go. It’s not about distraction. It’s really about the “now. ” And the now had an interesting device to solve. They live in the now. We can learn a lot from them.

It wasnt until I saw Benno playing happily on FaceTime I was able to join Jacob’s now. All those hours where he was content and I was angry on his behalf when both are just fine.

So that is what we are doing. We hunkering down, without Benno. We are hunkering down without the magic of our family and we are hibernating for our very survival.

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