I've been trying to do the best to keep his spirits up lately. He's recovering from chemo so that normally knocks him down to start with, and he's fighting an infection now to boot. As of now nothing serious, but I have to hope and get him to work to keep it that way.
He's been spending a lot of time in bed because of it. So, we've had time together. Books to read, games to play, movies to watch. In between all that a bunch of doctor visits and pharmacy consultations. I did send our Pharm another thank you note though. They really work hard to help me manage all his pills and medications so that they work and I don't mess it up.
He had some good moments in therapy today, perhaps the start of progress. I can hope. For now, there are a few new tools to try out to see if his coping and learning skills can improve.
I've been thinking lately of what my life might seem like to you, dear reader. Chaotic? Depressing? Faithful? Morbidly entertaining?
Perhaps it is a mixture of it all.
The best way I can think of to explain things is that to me I now see things and time as closer to being in a movie theatre. The house lights are down, the screen begins to glow, and the scary previews for the halloween period come on. You know the movie will start soon, but you have no real idea when, no control over it, and there is a new story being thrust in your face to watch and experience. That's a mild analogy.
There are moments of great excitement, worry, stress, fear, relief. There are boundless times where he is just asleep and I can only watch, soaking up the time and memory of him. Life changes goals and time for us, focusing not on a future goal or idea, but instead the moments of life currently passing by, as it's all the guarantee we have. Focus changes. Time still passes, never ceasing.
The bad days are days when I cannot remember the good outweighs the bad. Those days I fear and hate. I hold myself to be perfect all the time- for his sake?- and I cannot keep up. No one really can, but I cannot stop myself. I grieve that I do not have the knowledge or power to stop this, to cure this. I cannot take it away.
But I can write and record and remember the laughs and smiles of him today. The cheer on his face at seeing his friend. The satisfied look of feeling no serious pain and just enjoying breathing and singing. I can remember that.
My life is both all that it was, and nothing at all the same.
I have to write my own rules for this. There's really very little precedent.
I can hope this was more insightful than rambling.