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Real Talk, Part 2

4-year-old J was admitted to Children’s hospital with a fluid-pocket at his one-month-old surgical site. Right now, he feels fine except when someone prods that site, so on the one hand we’re doing fine, and on the other hand, he wants to go home because he thinks he’s fine.

Triggers abound. The elevators I used to visit Ronen and the ones I rode as I carried his stiff body wrapped in blankets in my arms to the morgue. Awakening to the surgical team, with the same attending surgeon we had last year for Ronen, rounding very early in the morning. The distinctly-flavored and not-strong-enough coffee from the cafeteria, the beeping of the monitors and the dinging of finished antibiotic infusions.

It’s hard to be the parent of a living child in the hospital when you’re being haunted by memories of one who died there.

Something interesting for today:

J looking for helicopters at Children's Hospital, August 2020

The Child Life specialist came in to chat with J, and, among other questions, asked him the innocuous-seeming, “Hey, do you have any siblings at home??”

J, not missing a beat looks at her (with side-eye and such attitude) and says, “Well, I have a sister and I have a brother. My sister [D] is at home. She is 4 and I am 4. We are twins. ... BUT, I also have a brother Ronen.”

J looks at me and says, “I’m going to say that Ronen is 4 also.”

I sigh, looking at J, and explain the situation to the Child Life Specialist and to J. “Ronen is not 4. Ronen would have been 1. In fact, he was in this hospital in the NICU exactly a year ago, but he died while he was here.”

I always seem to catch people here off-guard when I start talking about Ronen and the fact that he died here. And I’m not vague about it either. I dislike metaphoric and flowery language that distances us from the event. He didn’t “pass away,” he’s not my “angel baby,” he wasn’t “taken back by God.” He died, plain and simple. I think people get startled by the directness of my phrase. There’s nothing beautiful or poetic about my language here; there was nothing beautiful or poetic about the way he died either.

Just as we’re trying to figure out “bereaved parent math,” there’s apparently something to “bereaved sibling math,” too. We’re all just trying to figure out how to count this missing piece in our world when people ask us those seemingly-simple questions.

I have no magic answers and no magic words.

We stayed at Children's for two nights with J, and he came home Tuesday with a prescription for antibiotics that will continue his treatment. I'm more cynical now than I used to be, but I'm a better medical advocate for my children. Sometimes I feel like the fearsome lion with the scar over my eye, so everyone knows I've been through something. Sometimes I need to remember that not everyone can see it and I need to remind them that I am a product of my experience. I am angry, I am fearful, I am guarded, and I am strong. I am broken, but I am slowly cementing my own fissures.

I am breathing... And walking, one step at a time.

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