Whoa. This has been the longest week ever. I feel like I have learned as much about myself and about patience, coping, strength, and lack of strength this week than I have in my full 27 years leading up to now. The problem is, I realize, it hasn’t actually even been a week yet since Sam was admitted. (How is that possible?)
Anyway, the days are crawling by and Sam’s condition has evolved. I won’t say it’s worse, because some things have improved. But in other ways he has become more and more miserable and that feels worse. I’ve never sat so close to someone for so much of the day and also missed them so much at the same time. The initial treatment for Sam’s GVH didn’t work, so they are onto the second choice drug to try to fix Sam’s insides. They seem adamant that they need to get this under control quickly, but also that there are more options to try even if this option #2 still doesn’t work. I could honestly just do without doctor updates at this point because we tend to find ourselves somewhere on the “Modern Jackass” spectrum (as This American Life producers call it), where we talk expertly about something we don't actually know anything about. At this point, we can ask Sam’s doctors about side effects and time frames and next steps and survival rates, but really, all we have to do is wait and support Sam. That is all there is to do. So, after a downer doctor update this morning, I sat on the edge of Sam's bed and we had a pep talk. I said, “Hey, you’ve stared down some pretty daunting numbers before and absolutely breezed by them. You are young, strong and have an incredible, brightly-shining will to live that is no match for this disease.” And with that, his face relaxed and he said, “ok. You’re right.” And turned over, and went back to sleep. It wasn’t the most inspiring pep talk. It wasn’t the first, and won’t be the last. But Sam knows this and he is patient and strong. He doesn’t need many pep talks because he knows he has many more mountains to climb and fish to catch and adventures to have. He is probably dreaming about them as I type. Or I hope he is. Unfortunately, by now he is well versed in the need to put his head down, put on his patience-pants, and get through the shitstorm. He has done it before, and although he doesn’t FEEL like he has much left to give, I know he can do it again. Thank you to so many of you who have taken time to write. I have read as many notes as I can to Sam and I personally read them over and over throughout the day to remind myself the army of vibes being sent straight into his soul. Happy Christmas, all. Wishing you peace, happiness, joy and patience-pants from the Weises.
Beverly Mangerson
12/23/2015 02:29:36 pm
Want you both to know how much we are pulling for you. Wishing your holidays were a little brighter. Sam is such a fighter. We know he can get through this. Hang in there. Hoping your holidays turn brighter very soon. Love you guys Comments are closed.
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