It gets harder and harder to figure out what to write here. Saturday, I had this whole, “gadgets we bought that might make your loved one’s life better!” but by the time I got back here, Preston was uncomfortable and agitated and I just had to keep doing the next right thing.

I don’t know exactly what I thought this would be like. Maybe more of what we were doing at home – watching movies, talking, reminiscing, being together.

But that’s not what this is. And I started to write it all down – to help you know what this is like. To share this journey so you can have a better understanding if you ever have a loved one that has to go through this.

And the more I type, and try to find the words to express it, the more I realize that there is nothing I could ever possibly say to help you or anyone else prepare for this.

I’m exhausted, and know I should try to sleep at home, but the one night I tried, it was awful. So I’m here, with this weird little squeaky recliner pulled up as close to the bed as possible and tucked under the t-shirt quilt I made in January. I hold his hand. I push the button for the nurse when I think he needs more pain medicine. I talk to him about all sorts of things. We listen to the slower, acoustic songs of our favorite artists.

I tell him it’s OK to go. That somehow, we’ll survive. I tell him that – as it says in a song I can’t stop listening to – “If I leave you, it doesn’t mean I love you any less” and I pray that he can find the way to move on.

And I’m not a pray-er.

And what a weird thing to wish – that your most beloved would die.

But his spirit has been elsewhere for a couple of days, and now I wish peace for his physical being and the little bits of consciousness he’s holding on to.

Conor has not been to visit since P was pretty alert on Friday. I’m glad he’s spared the trauma of watching his dad like this. Every day, we give him the option, and make sure he knows that there is no wrong choice. He is in the loving care of my family and they’re making sure he’s distracted, well-fed, and having fun. I miss him, and I need to be here with his dad for the time being.

I’ve lost most concept of time, without any of the usual markers of the day. And interestingly, even though my brain is famous for running on overdrive, I find that I’m able to sit quietly for long periods of time with little distraction and it doesn’t drive me crazy. I’m not sure what that’s about. Exhaustion? Trauma? Helplessness?

I am both desperate for, and afraid of what’s next.