I just wish more for them

The honeymoon is over. I am honestly amazed it lasted that long. The novelty of the hospital and all of this attention is no longer novel and Jacob has had enough. 

He wants to go “home.” 

Jacob needed a blood transfusion today. 

How do you explain to a five-year-old that you are not only not leaving the hospital, but you will be here for the next 10 hours? 10 hours! Sitting. 10 Hours in a room with no window. 10 hours and this is a “light day.” 

It’s impossible. 

Especially when you’re talking to a five-year-old. They have no perception of time.

Every ten seconds. “Can I go home now?”

Then he SCREAMS. Remember our life is very loud. Jacob is deafeningly loud. He is like a LION.  Then he cries. And asks all over again. 

He is captive. Captive in this hospital, captive of his own body.

He’s sleeping now and Steve is with him.

I came home to Benno who I’m seeing in a new “light.” I am trying to get him to see life with a little light.

It started to rain when we walked into the grocery store.  He wanted to make smores so we had to go. It wasn’t a little rain, but flash flood rain. Benno, of course, is unwilling to go out in the rain. He wants to call an “uber.” We live 1.5 blocks away. 

But he is seeing it all WRONG. This is awesome.  I tell him how lucky we are. How we are going to run in the rain and jump in every puddle. We are going to get SOAKED. It’s going to be fun and I started to run. I didn’t even look back to see if he was following. I just ran. And then there he was in front of me now, running and laughing. 

And boy did I need that. I needed a good cleansing. I needed to see Benno smile.

And then it happened. He let his guard down.

UGH! I should know better. I should. This is what I do. I know that anxiety can impair someone’s ability to learn, but we spoke about it 20 different times. 

He asked if he is going to catch cancer. 

I reminded him of the ALL times we talked about this. I reminded him about the doctor that sat down with him at NYU. He doesn’t remember ANY of it. 

I wonder now how different Benno’s life has been from Jacobs. Benno was also imprisoned 10-12 hours a day. Imprisoned in his bedroom he shares with Jacob where he is thinking he is catching cancer while he’s sleeping. 

I think this is over. I think I explained it, but I thought I did last hundred times too…

I just wish more for my children.

I just wish more for them.

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