Another late night last night. Me “How’s your pain?” Adler- “You know when you see pictures of clouds with lightning all in them?” Me- “Yes” Adler- “That’s what it feels like, inside my body. It’s lit up with pain in different places” (Enter lightning sound effects provided by Adler!!) Me – “Oh buddy, I’m so sorry. That was a sadly awesome description. I’m gonna write it down. You need to tell the palliative care team this exact description”. And it is all over. His back, his stomach, his legs, his neck, his joints like knees and wrists and shoulders too. So. We were up until almost 2 am again. He described his buttock pain at age 4 like being struck with lightning. The docs were all impressed with that description for such a young age. Heating pads in every room. Neck wraps to warm in the microwave. Gels, creams, patches, ice packs…….God you name it, we have it for pain. I guess the storm is still there. It’s just all over now. He’s delt with more pain than any human I know. I hate it. I just want to take him away somewhere and let his body try to heal and get stronger. So many questions. So much fear and worry that doesn’t seem to settle. Just like lightning. He’s an absolute warrior. Truly.

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

Adler