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Cleaning up the kitchen like any normal Mom would after getting her son a snack and then I see this. No big deal right?? Music playing. The screen door allowing the winds of spring to blow in, appreciating the sunshine……and then I see this. These three drink containers I bought special for him because for those few weeks he actually got to attend school post op and post Covid, he needed something that didn’t leak and that he could open. His hands don’t work like they used to. You know, after losing the use of his arms and all. So I got these for him. And here they sit now. Dusty and waiting. So much fucking waiting. On calls back, on test results, on appointment times, on someone to get it that he’s absolutely miserable and needs help…..again, on the tumor to grow because it will not on treatment…… and all this was uninvited. People say they can’t imagine, but you can, just take 20 seconds and close your eyes and think what it would be like to be sitting in a room with a doctor who says your child has cancer. Imagine holding them while they cry from it, puke from it, shit themselves from it, have rashes and mouth sores and lose their hair that’s in clumps in your own hands because they were so little they didn’t shower by themselves yet so you washed their hair still. Slathering creams on his rash and blister covered skin. Putting gloves on for the pills he swallowed but I couldn’t touch twice a day being reminded each time why I was giving them to him. And that was from the treatment to save them. Save their life. Their life!!! Just imagine that!!! He was barely alive before diagnosis at 4 and the pain at 3!!!! Imagine staying up nights with them doing everything in your existence to ease their ever present pain because that’s how the monster showed himself, through pain. Agonizing pain. Pain for nearly 8 years!!!!! And the research never seems so stop. Ever. Constantly looking for something to help him. And now. Now it’s ripped a gaping hole in your heart, family and life that can’t be fixed with a fucking walk in the sunshine because that hurts his legs. There’s no catching up on sleep because every night is interrupted by my own unsettled mind. And all the while he’s laying in his recliner in the other room covered in a blanket he got for Christmas that he opened while wearing his neck brace from a spinal fusion that happened from kyphosis from the biopsy surgery that he lost the use of his arms and worked his ass off to regain all for the purpose of finding out if he tested positive for the BRAF mutation to qualify for the trial that he’s not on anymore because it didn’t work how they had hoped, so yeah, we smiled as he was able to open the gifts. God, It’s all SO fucked up. A daily emotional rollercoaster cocktail shaken up just by seeing three drink containers resting on the windowsill. Damn. If I could just lick normal to get a taste I probably wouldn’t even remember the flavor but, I bet it’s delicious.

by | Mar 30, 2021 | Updates From the Road

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

Cleaning up the kitchen like any normal Mom would after getting her son a snack and then I see this. No big deal right?? Music playing. The screen door allowing the winds of spring to blow in, appreciating the sunshine……and then I see this. These three drink containers I bought special for him because for those few weeks he actually got to attend school post op and post Covid, he needed something that didn’t leak and that he could open. His hands don’t work like they used to. You know, after losing the use of his arms and all. So I got these for him. And here they sit now. Dusty and waiting. So much fucking waiting. On calls back, on test results, on appointment times, on someone to get it that he’s absolutely miserable and needs help…..again, on the tumor to grow because it will not on treatment…… and all this was uninvited. People say they can’t imagine, but you can, just take 20 seconds and close your eyes and think what it would be like to be sitting in a room with a doctor who says your child has cancer. Imagine holding them while they cry from it, puke from it, shit themselves from it, have rashes and mouth sores and lose their hair that’s in clumps in your own hands because they were so little they didn’t shower by themselves yet so you washed their hair still. Slathering creams on his rash and blister covered skin. Putting gloves on for the pills he swallowed but I couldn’t touch twice a day being reminded each time why I was giving them to him. And that was from the treatment to save them. Save their life. Their life!!! Just imagine that!!! He was barely alive before diagnosis at 4 and the pain at 3!!!! Imagine staying up nights with them doing everything in your existence to ease their ever present pain because that’s how the monster showed himself, through pain. Agonizing pain. Pain for nearly 8 years!!!!! And the research never seems so stop. Ever. Constantly looking for something to help him. And now. Now it’s ripped a gaping hole in your heart, family and life that can’t be fixed with a fucking walk in the sunshine because that hurts his legs. There’s no catching up on sleep because every night is interrupted by my own unsettled mind. And all the while he’s laying in his recliner in the other room covered in a blanket he got for Christmas that he opened while wearing his neck brace from a spinal fusion that happened from kyphosis from the biopsy surgery that he lost the use of his arms and worked his ass off to regain all for the purpose of finding out if he tested positive for the BRAF mutation to qualify for the trial that he’s not on anymore because it didn’t work how they had hoped, so yeah, we smiled as he was able to open the gifts. God, It’s all SO fucked up. A daily emotional rollercoaster cocktail shaken up just by seeing three drink containers resting on the windowsill. Damn. If I could just lick normal to get a taste I probably wouldn’t even remember the flavor but, I bet it’s delicious.

by | Mar 30, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/2PbNNMv
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