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1/29/2025

I overdid it yesterday. Woke up with sniffles, scratchy throat and exhaustion. My first thought was allergies. At least that was the hope. Yesterday's run took me through a lot of weeds and rotting brush. Then went to work. My entire team shared the symptoms. Not allergies, just another virus. :(


Working with kids in a medical setting, this is normal. Our approach to illness is different than most. It's part of the job. To me, it's worth the risk. I love my job. The complex challenge of behavior and communication, the chaotic activity, the entirety of it all. And yeah, it's tough - protecting the most vulnerable.


After years of being a sole caregiver - working in a team of equals is something I could only dream of. If feeling down, we easily can shift resources to one another. So today turned out to be a pleasant day. I hate that scratchy throat feeling and that's what I'm stuck with tonight. Might as well write it into the journal. Lol.


I do like the idea of daily public writing. It's helping me set a new habit structure - despite how jumbled it may be. I've written of this before but I am so burned out of trying to polish write for an audience. It destroys creativity and genuine emotion from being expressed.


I am also a painter. The idea of someone editing my paintings? Drives me insane. Never going to happen. Not sure why it's become socially acceptable to have someone review words and reframe them for someone else to digest. It's probably why to me everything written feels like an AI template. Bland and boring. As a creative, I definitely lean into the mindset of a freestyle painter vs writer. I hate editing.


I understand the need for standardization and rules. But for me, my entire lifestyle depends on being able to effectively communicate under severe and unique circumstances. I live in a nonverbal world. Both my own kids are blind, Jake is considered deaf-blind while also being non-verbal.


As for me? I no longer fear challenges. And that's bold of me to write but there's not a day that goes by that I'm not humbled by life reality. I survive anyway.


Today at work we talked about our backgrounds....again. We've been a team for almost a year now - and still learning about one another because it's actually difficult to pick up details while in a chaotic environment. Plus we all love to overshare. Bleeding out all the trauma, leads to more empathy and understanding. I believe it's healthy to share emotional achievements. Yet those topics can be hard. I found myself talking about painful subjects. It's easy to talk about painful subjects with trusted colleagues, not the public.


The hard fact is that I even terrify my closest friends with my reality. They love and care about me. It's scary what I have to face. And if people who spend their lives dedicating their lives to special needs children and parents - are uncomfortable with aspects of my life, what hope is there of a random person understanding?


So yeah, it's a difficult balance - advocacy and public standing. I find myself in the crosshairs at all times. For being honest.


watercolor abstract painting combined with computer for a multi-dimensional art piece
watercolor abstract painting combined with computer for a multi-dimensional art piece

Unlike the media, bringing up grief topics - actually results in isolation and disconnect. I've lived this truth. I know it happens. Same with promoting fear. It turns off curiosity. This kind of stuff is on my mind tonight because I had time to scroll through the latest political noise and responses. Just because someone is good at making noise doesn't mean they are good at communication.


Very few people are good at communication. It takes a high degree of creativity and skill. Along with lots of practice. It takes an exceptional amout of practice to isolate out the reactionary impulses from the environment. Creative fiction writers are, in my opinion, so much better at this than modern journalists. They're in their own world and don't need to draw superstitious boundaries and apply random leaps of logic to any given moment.


I spent years writing novels. It was a fun hobby while also escaping the daily grief grind of caregiving. I would be the first to tell others, writing is a destructive habit. Despite the destruction, there was also unbundled joy to be found. The self examination, discovering the layers of unpeeled emotion became an addiction.


Basically it's so much easier for me to jump into a character than write out my first person life experience. This type of public journaling? A terrifying new thrill for myself.


I absolutely love the idea of a living website. All under my control. Investing daily - with the only thing I have, experience truth.










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