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Seriously. We are so tired. Especially Adler. Another late night with him and me bearing witness to his discomfort. It was after 1am when he said after well over and hour of pushing his leg down on the heating pad “Mom, I’m just so tired”. And he is. From treatment. From entirely too many late nights. From fighting for his life. I leaning over and touched him and did my best to reassure and comfort him. Me asking where do you hurt is on repeat and has been for so long now that the pain scale is irrelevant and he describes it in such a way that oddly impresses doctors and therapists and saddens me because he’s a pain pro. I cried putting him to bed as we adjusted the heating pad to where he needed it. I cried because I hate it for him. I cried because I can’t do anything other than what I do and have done for him to be supportive. I cried because my son is in pain and has been for so long now that it has become routine. I cried because I’m tired and fell asleep with him on the couch for like 7 minutes. He said I was breathing heavily and it wasn’t even 10 minutes but I still felt bad because I am his comfort. I will be calling tomorrow about the pain clinic making sure they remembered. I’d call today if I could but it’s Sunday. Which I actually forgot yesterday it was Saturday because most days all just feel the same. They have for years now. Those who are suffering from pandemic depression I am sorry you know what it feels like because caregivers like me who have been isolated due to their child’s pain and misery from their disease…..we’ve been knowing ALL about that for a long time now. Too long. But. You just keep going. He just keeps going. No choice in the matter. New treatment, new doctors, new therapies, and no finish line. Man was he bummed when he thought of changing treatment and does that mean he doesn’t get to ring the end of treatment bell?? He’s never gotten to do that. It’s the little things. So. If we get a break we’re taking a break in Disney World because he deserves it. We had it planned for Christmas last year and then pushed to Christmas this year but with all things considered, I think we will go when we can, if we can. Pain and all. He needs some happy. I want to witness that. Smiles and some joy. So unbelievably necessary.

by | Feb 7, 2021 | Updates From the Road

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

Seriously. We are so tired. Especially Adler. Another late night with him and me bearing witness to his discomfort. It was after 1am when he said after well over and hour of pushing his leg down on the heating pad “Mom, I’m just so tired”. And he is. From treatment. From entirely too many late nights. From fighting for his life. I leaning over and touched him and did my best to reassure and comfort him. Me asking where do you hurt is on repeat and has been for so long now that the pain scale is irrelevant and he describes it in such a way that oddly impresses doctors and therapists and saddens me because he’s a pain pro. I cried putting him to bed as we adjusted the heating pad to where he needed it. I cried because I hate it for him. I cried because I can’t do anything other than what I do and have done for him to be supportive. I cried because my son is in pain and has been for so long now that it has become routine. I cried because I’m tired and fell asleep with him on the couch for like 7 minutes. He said I was breathing heavily and it wasn’t even 10 minutes but I still felt bad because I am his comfort. I will be calling tomorrow about the pain clinic making sure they remembered. I’d call today if I could but it’s Sunday. Which I actually forgot yesterday it was Saturday because most days all just feel the same. They have for years now. Those who are suffering from pandemic depression I am sorry you know what it feels like because caregivers like me who have been isolated due to their child’s pain and misery from their disease…..we’ve been knowing ALL about that for a long time now. Too long. But. You just keep going. He just keeps going. No choice in the matter. New treatment, new doctors, new therapies, and no finish line. Man was he bummed when he thought of changing treatment and does that mean he doesn’t get to ring the end of treatment bell?? He’s never gotten to do that. It’s the little things. So. If we get a break we’re taking a break in Disney World because he deserves it. We had it planned for Christmas last year and then pushed to Christmas this year but with all things considered, I think we will go when we can, if we can. Pain and all. He needs some happy. I want to witness that. Smiles and some joy. So unbelievably necessary.

by | Feb 7, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/39Uvkvm

Welp. We tried to go to school. We drove all the way there even. But the nausea got worse on the way and he was lightheaded and kinda dizzy. So after a sad deliberation in the car, we came back home. He’s missed the whole week and was looking forward to cozy comfy day thanks to his classmates winning it at the auction last year. So, we’re here. Hanging on the couch and I am keeping an eye on him. Poor kid. 😔

by | Feb 5, 2021 | Updates From the Road

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