Reality Check

You know how you've heard about a place for your whole life...and you imagine how it's going to be...and you have expectations of what you're going to get...

And then it isn't quite that?

So that's what happened to Sammy. 

Israel. 

His whole life he's heard about it. 

Imagined our family trip. 

Was told that he would study there someday. 

When we told him that his leukemia had returned, one of the first things he said was, "I will never go to Israel."

So we made it happen. 

Israel. 

I was very honest with him. 

It won't be like home. 

The food will be different. 

Things might smell funny.

It's a long plane ride. 

Yes, he said. I want to go. 

Each day I would repeat this refrain. 

Each day he said, yes. I want to go. 

I offered to cancel. He didn't feel well. Even on the day of departure. No, he said. I want to go. 

On the plane ride to Israel, he was uncomfortable. It was hot. He developed a rash. But then we got off the plane and he smiled. 

Israel. 

But things weren't quite as he imagined. And he started to feel worse and worse. The rash got worse. He was itchy. He was tired. Things weren't like home. 

I reminded him that I had warned him. 

He didn't care. 

Jet lag has been hard. 

We've tried to make the best of it, feeding him the peanut butter and Oreo cookies we brought. But the food isn't what he had in mind. 

He's tired and uncomfortable. 

Things aren't what he imagined they would be. 

Late last night (or early this morning, I guess), I had a powwow with Dr M and our palliative care nurse to figure out how to salvage this experience for him and help him feel better. We changed the meds. We talked strategy. 

Operation Salvage and Distract was enacted today. We changed the itinerary and added the Jerusalem Zoo. Sam loved it. 

We fed the elephants and the giraffes. We met the zebras and the rhinos. 

He was tired but enjoyed it. 

But it all came crashing back down when it was too cold to swim. (The pool is heated but the air was cold.) Disappointed doesn't even begin to describe it. 

Up and down. 

His mood, his sense of well-being. 

How do you live with the knowledge that you're going to die from the disease in your body? How do you enjoy these moments when you just feel like it's not what you expected?

He's only 8 years old. I couldn't expect him to want the same things two days in a row if he were a healthy child. But this has amplified and exacerbated all the negatives.  

I hate God, he says to me. 

I hate everything. 

There is no manual. There is nothing to tell us what to say to him in these moments of terrible emotional pain. 

Even in Israel. 

We want magic. 

We want big beautiful grand moments. 

But it doesn't always work out the way we hope. 

We have a couple more days in Israel. 

Hopefully in each day we will be able to find a blessing...