I woke him for online school today. He asked me to get him up instead of using his alarm. So. I set mine to make sure I was up in time because we were up until almost 1 am again with his pain. He came into the family room around 10:30 last night. I could tell in his walking that he was hurting. I had already given him meds for his shoulder pain. He paced around a bit and was talking with me about random things. That pacing and chatting lasted for well over an hour. Then he finally sat down with me and the conversation continued. No TV on. Just he and I talking. About allllll kinds of stuff. But in that all kinds of stuff were a few things that had quite a bit of depth not just distraction chit chat. We discussed his pain and what it’s evolved into. From the beginning to now. From the buttock pain then, when it came back and how it’s now the leg pain that the buttock pain changed to 3 years ago that plagues him still. We talked about how it feels. This is how he described it. “It’s like a weight. A heaviness that hangs off me. Like it pulls and rips and constricts. It just hurts” and as he said it he was making a twisting motion with his hands. He said “it’s a binding, heavy pain, which makes it hard to walk. I notice my walking now. I have to focus on it to make it work. And it’s every day now. Every single night it hurts like this ” And that’s what we talked about in the middle of YouTube, TikTok, movies and school chat. So. He’s really tired today. He got pretty nauseous this morning too after he got done with his online check in. We rescheduled an appointment for him today too. Next week is his MRI and oncology check up. As his pain increases and moves around him and nausea pops up, the worry builds but is so oddly familiar it’s damn near comforting because I’m so used to it and that’s fucked up. His effort to just BE on a daily basis is exhausting. School is all he wants but it’s hard with the pain and fatigue. To be 11 and as close to a kid as he can be is all he wants. But cancer has stolen so much of that from him. Joy is sought out and appreciated in a way that’s unexplainable as we sit with pain, depression, long lasting side effects sprinkled with anger because of cancer. And we sit with it every day. Yet we are thankful for these days amongst the sadness and grief. Navigating them as best as we can. Who knew living would be so fucking hard???

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Adler