#AdlerSwag
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by | May 21, 2021 | From The Road

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by | May 21, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3uirvHr

by | May 21, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3wlITfJ

This afternoon and into the evening he had pain in his legs. He’s determined to go to school tomorrow and to go on the field trip Friday. It’s outdoor education. Hiking and walking. He’ll do it too. In pain. And I will be with him. Just in case. A special case as parents aren’t supposed to go because of Covid. Do you know how badly I wish I didn’t have to?? That my worries and his teachers worry about him didn’t “matter”. But that’s not the case. No. It isn’t. And I’ll walk and hike with him because that’s what I do. My fat outta shape ass stuck on the couch in my own hell with my own health issues will do it with him. Damn right I will. Because I am his witness. In the thick bullshit of it all, I am his witness. No victims here. But damn those virtual hugs sure would be nice in person.

by | May 20, 2021 | From The Road

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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???

by | May 19, 2021 | From The Road

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