Jeb's blog

Nothing Here Is Promised

“Nothing here is promised, not one day.” — Lin-Manuel Miranda

It was a Tuesday. I don’t remember anything about the weather, though I suppose it wasn’t raining or snowing—I’d probably remember that. I had a 12:30 meeting to discuss headline writing best practices with our staff, then a 1:30 marketing meeting and a 2:30 revenue planning session.

Somewhere in there, Amber texted me from her regular OB-GYN appointment to let me know that her blood pressure had spiked dangerously high. She said the doctor would recheck the pressure, which had never been elevated before, but that if it didn’t improve she would need to go to the hospital.

What’s Water?

Stanley on Thanksgiving Eve, Four Months Post-Transplant

 

There are these two young fish swimming along, and they happen to meet an older fish swimming the other way, who nods at them and says, Morning, boys, how's the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, What the hell is water?

—David Foster Wallace

 

Alice in Wonderland and Dreaming about Stanley

There is a scene in Disney’s Alice in Wonderland where Alice tumbles down the rabbit hole. At first she’s scared. Then, realizing the rabbit hole plunges down and down into near infinity, she calms, floating past lamps and furniture and funhouse mirrors, exclaiming, “After this I shall think nothing of falling down stairs.”

When she finally lands, Alice discovers a door, which she opens, only to find herself confronted with another, smaller door. Behind that door she finds yet another, even smaller door, behind which is, yes, another, smaller door. And so on.

This is the closest analogy I can find for having a chronically ill child. So often people discuss sickness as a battle, a fight. It’s not. It’s a labyrinth governed by laws that are subject to change at any moment.

Dear Stanley

It’s the morning of day twenty-two post-op. That means that twenty-two days ago, sometime in the predawn darkness of Sunday, the doctors came into the overly bright waiting room to tell your mother and me that the surgery had been "a battle" but had ultimately gone well. You had a new liver.

Since then you’ve healed, grown sicker, had tubes removed from and added to your body, a million sensors stuck to your little arms and torso—a rainbow spaghetti of wires.

Twenty-two days and still you lie in the pediatric intensive care unit as the doctors chase some phantom infection that’s attacking your body. Virus? Bacteria? They can’t say for sure.

This is What a Good Day Looks Like

Stanley is alert and comfortable and able to crack a few little smiles. Soon he'll be chowing on his first real non-medical food in ages. This is what we call a really good day. 

How to Eat a Whale

The last thing you want to wake up to at 3:15 AM is a bright room crowded with doctors and nurses swarming over your child, to another mass of nurses and doctors standing in the doorway and hall, all gazing intently at the monitors above your child's bed.

My Son and a Stranger's Liver

The worst day in someone’s life, in some family’s life, may have saved my son. This central fact defines so much of the surreal organ donation experience.

On July 15, 2016, somewhere in the greater New York metropolitan area, a 14-year-old died of unspecified head bleeding. We don’t know what happened, the donor’s name, if they were a boy or a girl, what they were like, what they wanted for the future—all we know is that his or her family, in what was presumably the worst moment of their lives, consented to donate their child’s organs.






 
 
Syndicate content