Notes on Between Two Kingdoms

Originally Written March 18, 2022 6:37 a.m.

Notes on Between Two Kingdoms

I’m reading a new book, Between Two Kingdoms, by Suleika Jaouad. It was a birthday gift from Joey (I had asked him for it). I came to her by accident; I’m a big fan of her partner, Jon Batiste. I love seeing him on Stephen Colbert’s show, and I’ve got his last album almost memorized. Somehow Suleika ended up in my Instagram or Twitter feed, and I was immediately curious. Her leukemia had relapsed and she was due for another bone marrow transplant. I have even subscribed to her Substack – the one you have to pay for – and loved it. Her writing is amazing; her writing prompts, useful and eye opening.

I’m to the point in the book where she’s just begun her 100 day road trip, several months after her final chemo session. She described how difficult it was to transition back to the person she was…except not so much difficult as impossible. And I started thinking about my life as the mother of a sick boy. Not terminally sick, no – but always dealing with his body betraying him. Some of the betrayals are just painful, annoying, or humiliating (maybe “just” downplays it too much; I don’t know). But some are dangerous and life-threatening. And the selfish part of me wishes for the former because the latter brings the possibility of losing him. That’s something I can barely stand to think about for very long, even though I have, many, many times.

But it has changed who I am. I remember years ago reading a post of one of my stepdaughters talking about how much they admired their mother for always making fun in life, taking chances, being spontaneous and all of that. And I felt a little bitter – that I used to be that way, before being the mom of a chronically sick child took it away. And I knew maybe it was a terrible way of looking at it, that I made choices, but I didn’t see any other option. My life was about keeping him alive and as well as possible, and that ruled out a lot of spontaneity. Because our version of spontaneity was medical chaos – that is what uncontrolled epilepsy IS. 

But he is now 19, to be 20 this year. And his health is better than it was, though the seizures aren’t gone. And I don’t who I want to be now – or even, maybe, who I can be.