Oh the World, and Us


On a recent lunch break, I hightailed it to the nearest candy store. I was all of the sudden having a strong craving for pastel colored nonpareils, just like my grandmother used to keep in a small china bowl in her living room. Emotional eating is not my usual coping strategy, but I decided to go with it. The shiny shop was lit up so brightly, it was almost squint-worthy. Techno poured out the speakers, and as I bought my handful of glorified sugar, I asked the store clerk how his day was going. He looked at me and explained, cheerfully, “I can’t complain. I went to sleep last night in my home and then when I woke up everything was still there.” He smiled. It was clear he was genuinely grateful to be avoiding a terrible disaster.

That’s how I feel most days, too, in all kinds of ways.

Like almost everyone else that I know (and barely know), I’m worried about the world. The hurricanes and the bigotry and so much suffering across the globe.

There’s a whole lot of heaviness.

Back at home, things feel more hopeful. E. is stable, growing and, truthfully, giddy most of the time. We have a dedicated, highly skilled team of nurses and providers who help us manage her medical needs. And E. continues to walk a bit each day with just a hand to hold and nothing else.

What has become somewhat normal is fairly strange: E. lives on the feeding tube, she doesn’t eat. On most days, our girl still throws up a few times. Whenever it happens, I feel it in my gut. That never feels normal to me. And that’s probably a reasonable reaction to the retching and gagging and then sometimes being covered with bile.

The future is unknown; we live with the word maybe. Maybe this will be okay, maybe she will thrive. Maybe we will be back in the ER repeatedly again this winter. Maybe someday we will have one child instead of two.

But E. is less phased by it than I am—by a landslide. Yesterday she was simultaneously dancing and puking. She started throwing up a lot first thing in the morning when I got her out of the crib. As a distraction, I started up the iconic Sesame Street/Feist video, “1234”. Right when the music started, E. looked at me, wiggling and bopping her head back and forth in time. She was really getting into it.

As usual, we are saved by a song and another unexpected, expansive moment. And, yes, a two-year-old’s twerk.

A few nights ago, A. and I were giggling together, sitting on the carpet in the basement. I don’t even remember what we were even laughing about, although this happened very recently. But I do remember this: Five-year-old A. stared deep into my eyes and said, “I will love you, even when you are dead.”

It struck me as quite possibly the kindest thing that anyone has ever said to me.

I’m a sucker for those existential conversations.

He had finally, finally gotten his pajamas on after nearly perfecting bedtime avoidance strategy number thirty-four. Then he asked me, again, “When are you going to die? Will it be in October or November?”

I thought, Hmmm. Well, I certainly hope not. Fall is my favorite time of year.

I said all the things you’re supposed to say when talking about death with your preschooler, all those therapisty things. That we don’t know exactly for sure when anyone will die, but that I likely won’t die for a very long time. And of course, that I’m planning on being around until I can hold my grandbabies (because I’m obsessed with becoming a grandparent someday).

Being alive is so wild. We know we are going to die, often unexpectedly. And then most of the time us adults walk around pretending of course, that won’t happen to me anytime soon. Or ever.

There’s so much we don’t know. And learning to live with that is a skill, like any other. Some days I can handle it like a boss, and I’m so fucking thankful. And then there are  still days when I’m crying in the car, wanting something that I don’t have.

But I’m grateful to get to grapple with these questions, with these amazing humans that I love, right now.

After all, I could be dead.

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