We Just Need to Live Through It


Cedar is gone on a two-week leg of a tour down the coast of California, one of my favorite places on earth. He’s with a band that plays nothing short of mind-blowing music. And he’s eating made from scratch, catered meals and staying in a hotel with clean white sheets. I am genuinely happy for Cedar, who gets to do what he loves. What he’s born to do. I don’t want him to miss this opportunity. But there are times when I want to actually be him. Right now is one of those times. I’m not that into being me, just at this particular moment.

E. caught yet another all-encompassing cold, which turned into total epic vomiting, which then turned into Pneumonia.

She’s been in the hospital since Sunday and we have no firm plans to leave.

E. gets going with the puking and retching, and sometimes she can’t stop to breathe. There are moments when I wonder if she might die in my arms. There’s just no way to describe what that’s like.

I’ve caught some type of exhausting illness, likely what E. has, or some permutation of it. I hope it’s what she has, because we don’t need a new round of who knows what.

Being in the hospital for days on end challenges all of my best, most persistant hope. E. is miserable most of the time, in pain and uncomfortable, wailing intermittently.

Today when E. was crying uncontrollably, my mother and I had tried nearly everything to get her settled down. And then by accident I started up a movie (I was looking for a half-decent kids show, but my technology skills are from another generation). It was “Adventures in Babysitting”, the new version, and all of the sudden she was laughing and clapping her tiny hands, the happiest she’d been in days. We had to distract her during the scary parts, but I guess my girl loves a good/bad teen drama.

A. literally did not see a screen for the first two years of his life. With E., we go with whatever works. We’ve got way bigger fish to fry.

E. had an endoscopy a few days ago. What they found is that the feeding tube balloon is getting in the way of her stomach, blocking the flow of food/fluids. The theory is that then, the stuff in her stomach only has one place to go—up and out.

I have been trying to convince the doctors for months that something is wrong with the tube, that it is not working for her. Because before the tubes, our girl did not have any problems with vomiting. Not one issue. Now, finally, they are listening.

Once E. is well enough, we are going to try to a new type of tube that won’t block anything. If it works, we may have found our way through this.

If it doesn’t, I don’t know what we will do.

I’ve been thinking a lot about G-d lately. I’ve started to pray more often, which seems awfully predictable. But praying feels good. I don’t believe that G-d will save our girl, or that G-d is responsible for making this better. I do know that I can draw strength from    G-d, from the unknown forces that connect all of time and space and nature and earth and sky. I know that we are just specs of matter in a near-endless universe. And that maybe through that strength and the amazing support that we have gotten from the people who love E. most, that someday, hopefully, I’ll be writing about something else.

Until then, we will be spending too much time at the hospital, watching unrealistic plot lines and bad acting. I’ll be eating the cold cheese quesadilla every time I order the room service, trying—sometimes unsuccessfully, to remember to be thankful for every small and big thing. Like the possibility of next week, or next month, or next year, being lighter.

2 thoughts on “We Just Need to Live Through It

  1. I came across your piece on Kveller and it really resonated with me. It brought me back 7 years, to the first year of my now 7-year old’s life: projectile vomiting, endless doctor’s appointments, NG tube, G tube, hospital stays, never-ending nights. All I can say is that in doing whatever works, you’re doing an amazing, super-human job parenting, advocating, loving and just plain surviving. It’s so very very hard. At least for us, it has gotten easier and so much lighter, and I wish the same for you.


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