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Mom here…… What a couple of days. I may have forced that smile a little bit. It doesn’t feel like Florida yet…..idk why but it doesn’t??? Maybe because we were just here in April?? Maybe because we drove?? Maybe because it feels more like home in a way?? Maybe because it’s not Disney but damn it’s still nice!!!! But mostly because it’s not a vacation. It’s for a pain management program evaluation for Adler. Round 2. We did this in 2019. But we worked a vacation around that one. This time it’s different because we just had one. It’s hard to explain other than there’s a couple ways to look at it. We are in such a limbo. One that I have discussed with others either battling cancer or other parents of children with cancer. Either you’re in treatment or in remission or cancer takes you. And here we are. In this weird living with cancer part. A part that doesn’t get much attention or assistance. And because it’s inoperable that’s what he has to do. Live with it. And then things like quality of life are talked about. And during said time he’s in pain. Suffering and suffering while we wait for the tumors to grow since he’s not in treatment. Again with the quality of life part. Thankful for it for sure. But none the less it’s a tough spot to be in especially for Adler. So. That’s why we are here. In Orlando Florida for pain management. Fucking hell. I sure will try to see and appreciate the good in it all but man oh man am I tired. Maybe after the 4 back to back appointments tomorrow I can try to bright side it all up and feel that Florida vibe because it sure is nice here. ☀️☀️☀️☀️

by | Jun 10, 2021 | Updates From the Road

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

Made me smile when I opened the blinds. The Adler and I flower corner. (We’ll see if any of the seeds we planted grow??) We went to bed late again due to his pain and man I wish I could sleep in. I have that adult thing where I wake up earlier than I need to because my body just does. I’ve looked up Florida driving routes and some places to stop along the way possibly. We talked with Adler’s therapist about this trip yesterday and we called it the “No pain no gain road trip” because if he had no pain we sure as hell wouldn’t be going. Sarcasm is heavy with he and I. And I thought about that as I lay here……no pain…..what would that be like??? He’s barely gotten to experience life without it. What would Adler’s life be like with no pain??? What would my life be like??? How different it would be. But instead how different and difficult it became because of it. This isn’t a “making memories” road trip. Not on purpose though I’m sure we will. This is to take Adler for his second evaluation at Nemours Children’s Hospital in Orlando for their month long daily pediatric pain management program. This isn’t for fun though we may have a little bit wrapped in there somewhere, somehow. No. This is for pain. Chronic pain. That Adler has dealt with for most of his existence. So. I’m gonna lay here a bit longer and look at our flowers and then get up and get this shit show going. 🅰️⚓🌈💙

by | Jun 5, 2021 | Updates From the Road

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