2:32 a.m. That’s the time of night (or super early morning) that Billy wakes up. I hope it’s a bad dream from too much Scooby-Doo. I listen to the monitor for a minute or two to see if he’ll fall back to sleep. I count on my fingers – January, February, March. Not long enough. I was really hoping we’d get to June before he needs more pain medicine for his bones (by IV infusion, about 5 hours).
I plod down the stairs to his room and offer him some water. He quiets. I trip back up the stairs and try to sleep, heart pounding from steps in the dark and worry. He cries out again (repeat above).
He cries out again. This time I just stay in his room pushing the dog into a tighter curl-up at the end of the bed as I perch on the edge of the twin mattress. I can’t really sleep at this point. And think how much I hate bone disease. I hate the surgery scars (make me wince, on the inside, every time I see them). But what I hate the most is the pain.
I won’t know for sure for a few more nights. Fingers crossed it’s just a bad dream.
I wrote this in May but was too superstitious to post it. It was pain, and Billy did more infusions. I was talking with one of my favorite researchers today about the pain. Apparently, Billy has it worse than most. Maybe he feels okay about 80 percent of the time and then miserable with pain 20 percent of the time? That 20 percent haunts me.
One of the reasons we (me) went for getting a companion dog for Billy was because I read that pets can help with pain, pets make people feel better. Everyone, pretty much, thought I was out of my mind to add another responsibility to my day to day life. Now everyone loves Picasso and has no doubt he is great for Billy, especially when Billy sings songs to Picasso like “you are my buddy, you are my pal” as he gives him sweet pets.