Insomnia again. At least on a night like this I can chuck down an Ambien and droll all over the pillow for several hours. Scott is on his emotional roller coaster now. Upbeat and chatty one minute. Glaring and growling 15 minutes later. Steroids suck.
It was hockey day for Derry today. His team has come a long way in the last month compared to how they were playing earlier in the spring season. They only tied, but now have been a month without losing a game. A small miracle indeed. Derry gets better each week, and when his muscle structure finally catches up to his size, he should be in rather good shape.
Stephanie has went to sleep. But she mentioned something yesterday that has me thinking tonight. She was talking about Memorial Day, and what folks "usually" do. She said - "I didn't know we were supposed to go away on Memorial Day". At the time it struck me as just one of those cultural anomalies we have at times because of where we are both from. But its been grinding in my head this evening. Yes, lots of folks "go away" on this weekend. But we don't. Not just this weekend, no weekend. We are in the unenviable position of simply not being able to plan anything that is more than a trip out for a couple of hours, planned at the last moment. Far too many things have gotten cancelled after we've planned them. Nothing of great magnitude mind you, but it is just the way we must be at this time.
We live a far from normal life these days. One of the hardest things ever asked to any of us is "what are y'all doing" or "what did y'all do this weekend". It's just a simple, almost rhetorical question that most folks ask just about anyone, but it just unnerves me these days for some reason. I feel we're short-changing the boys by not doing things on the weekend. Not going to a movie or game or beach or something away from the house. I know that is probably a silly thought, but it hurts to think how this bastard of a disease controls so many aspects of every part of our family. Stephanie can't watch Derry play hockey most weekends because of the side effects Scott is experiencing or if his counts are bottomed out. That eliminates 2 out of every 3 weekends right there due to his treatment cycle.
Don't get me wrong, it's not as if we were the kingpins of the social circuit prior to all of this. The frustration isn't the lack of "doing", it is really the "control" that this disease wields.
I know I seem to ramble these days when I write on here, but I do it off the top of my head and if it seems the cheese has slid completely off my cracker.....well.......maybe it has. Maybe it hasn't. But it is simply maddening to watch this happen to your kid. It's maddening to watch kids not make it. It's maddening to see what it does to one's wife, and all the other parents and all the families.
It is truly a lion that walks in your home and does as it damn well pleases, with absolutely no means of control to make it leave.
Off to Ambien Land....