Thursday, November 14, 2013


So much of our mood is determined by how Adi is doing, but even when Adi is having a good day, there is a world beyond these four walls.

This morning, before I even got out of bed, I saw a post that made it hard for me to get enough air into my lungs. I skimmed it, because I didn't want to read it too closely, but of course that only worked for a moment. I read it, and I read it again, and I could feel how my breath was shallow and how my heart ached. I could hear Adi in his room, calling for me, and I got up and went to him and pushed the pain down, to a place where I could return to it later.

Adi asked for breakfast, which isn't something we take for granted these days. He took his Zofran and asked for a hamburger. It was about 7am, so we told him that there were no available burgers at the moment. He was disappointed, but settled for several other options, including a sandwich, some oatmeal, and a few other items that I can't remember. He drank some water. We were pleased.

Around nine in the morning, we took him out for a walk in his wheelchair. The sun was shining, the air was crisp, and it was amazing. Adi waved at people as we passed them -- something else we no longer take for granted. There are so many days when he is withdrawn, reluctant to engage with the world.

Back home, Adi still wanted his burger, so Guy ordered some up from a nearby place. Adi ate one -- these are mini-burgers -- then threw up nanoseconds later, but even that was OK. We got things cleaned up, and Adi was ready to try again. He started with an onion ring, then worked his way up to a burger, after a booster dose of Zofran. And then a second burger some time later. Gifts, these moments are, gifts, because they remind me that my kid is in there still. 

I left to go to the grocery store, and I ran into an acquaintance. "You know, your job is just to be super positive!" she said. And I nodded. "Because if you're depressed, then he'll be depressed! So you just keep doing what you need to do! Just be super positive! That's your job!" 

And part of me wanted to choke her, because what the hell does she know? But I just nodded and said, "Yep! Absolutely!"

And then I saw my brother's tweet:

I could feel all the air leave my body again, and everything that I spent the day ignoring rushed to the surface, and I had to keep focusing on breathing in, breathing out. 

I'm home now, and Adi is still in a great mood. He chatted out the window with the neighbor, and he's currently using his iPad to Face Time us from upstairs. He asks us how we are, what we're doing, and tells us that he's coming home soon. He's alternately in Washington, Singapore. Houston, or wherever else he wants to be, and he asks me to show him his father, his sister, the fridge, the door. He is really funny when he wants to be.

Adi: Hi! How are you?
Me: I'm great, thanks! How are you?
Adi: I'm fine, thank you. How are you?
Me: I'm... great! What's new?
Adi: That's wonderful.
Me: Yes. 
Adi: I'm in a good mood! I'm so glad that you came to visit me. Can I talk to Guy?
Me: He's on the phone. 
Adi: Ok, that's good. How's Yoni?
Me: He's good. 
Adi: OK. I love you a lot. I'm going to call you later.

(3 seconds later, Face Time rings again, and we do it all over.)

And even while I am reveling -- reveling! -- in this good day, it hurts to breathe. It hurts. It hurts.


Mara said...

Abbi - I was hoping you wouldn't see hers.

Breathing is good.

The agony I felt... how you must feel... how she must feel...

Love you.

Anonymous said...

I would have punched that women who told you it was your job to be super positive...