Day 9

We are a quarter of the way through the induction phase of treatment. That is crazy.

Benjamin’s first full day at home was nice, and mostly peaceful. I slept like a rock, which I wasn’t expecting, and woke up in a panic–it was 8:41 and I had missed my alarm for medication. It was perfectly okay, of course; there were many days in the hospital when the nurses didn’t bring his dexamethasone until 9 or 9:30am. I will learn not to sweat the small stuff. It just all feels like big stuff right now.

Benji had a hungry day with very few negative effects from treatment. By the afternoon he was ready to be outside, so we played with the neighbors for half an hour or so. I was instantly aware of my helicopter status. This too will take some adjustment. I want the kid to feel normal enough to play with his friends without his mother hovering over him at every toss of a football. But I don’t want him overdoing it either, or getting a bruise or a bleed without me there. Much like the timing of the medicine, I’m sure many parents of newly diagnosed children have to find this tricky balance.

We spent a chunk of the day making minor accommodations that will bring ease to our new normal. Over the counter medications. New bathroom supplies. A pill box, pill splitter and two kinds of thermometers. Lists for the fridge. Food grade cleaners and vegetable scrubbers. A twin bed and a TV in our bedroom are on tomorrow’s list.

Tonight we enjoyed the first of many meals that will be delivered by sweet friends. It was SO good, and so nourishing, to body and soul. I can’t say enough how overwhelming the kindness is. I am not able to articulate it yet, or speak it out loud. It’s so appreciated. I still can’t believe it’s happening to us.

I’m considering moving this journal to a blog format. There are many topics I’ve entered into the search box these last several days that have yielded very little in the way of practical, tried and true parent to parent support. What did Toni Morrison say? If you want to read it, write it. So I may do that. And it’s providing me such solace to put it into words.

For now, Banyan is in bed with a book and a flashlight, and I have a cup of tea, brand new jammies, and these two waiting for me. I am beyond blessed.

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