6/30/2025. #37

Today's the last day of the month and of this project. I struggled with burnout a few days. I'm still torn on whether or not I want to extend it. I'm just so tired. I have a long summer ahead for me. This is the kids' last week of extended school year. Not only do they miss out on necessary services and routine - it's a lot of extra caregiving shift onto me and my mom. And work is certainly more difficult as well.

I started this kind of media project because I wanted to be an advocate and honestly document my life and the challenges the kids face. In my world, I cannot have an anonymous SM profile. I have way too much identifiable rarity in my life.

So how to deal with that - because like with politics, my life inspires curiosity (how did this happen to you?), disbelief (Have you tried ___ to heal ___? Rabbit holes), grief (depression is everywhere. Various forms of personal bargaining/denial projected) and even anger (you deserved this/blameshifting, telling me everything I did wrong to wind up here), all emotions really, when people are faced with disability concerns.

Yet it's my life and I'm pretty comfortable talking about it. What I'm not comfortable with? Repeating myself over and over. ><That tends to be what happens so my thought was to just put all of this into one place. I can assure everyone reading this - I personally have thought of everything. I think I'm most tired of rabbit hole suggestions and fear baiting (have you thought about ___the future and how awful it's going to be?)

Yes. I have.

I learned something on my life journey. Acceptance. There is no more fear in my world because when you're sat down and you're told that you now have two blind disabled babies? That kind of parent is not allowed to be afraid anymore.

They're 16 now. It's been a hell of a journey.

I wish I could say that the above paragraphs fit the 'accident' theme tonight because I'm tired and I don't want to write but nothing about what happened to me and the kids was an accident. I asked for medical intervention. Their life? Is a medical achievment. I went into premature labor at 20 weeks. At that point, Julia's amniotic sac was spilling out of my body and thanks to the skill of many medical professionals and their willingness to perform a risky rare surgery, the pregnancy was extended. I was able to stay pregnant for almost another month.

And yes, it's hard - the ownership of that decision. It's probably the worst grief I face at times. For example, if there had been a car accident and this traumatic situation just happened to me while pregnant - processing that kind of grief would have been completely different. However I was in the driver's seat. Doctors respected my body and opinion, even if they did not agree with it. Many did not agree with my decision to preserve the pregnancy.

It's hard. I have a challenging life now. An unbelievable life. And when unbelievable mixes with a challenging life - getting others to understand the needs/concerns I have is damn near impossible. There just isn't any relatability.

How to fix the relatability issues? It used to upset me. Only one day I realized I wasn't actually telling people the events of my life. It was easier to just swallow the pain of the day and move on. I was good at that, disassociating into creative fiction as a writer. On some level, I even wonder if that isn't the solution to any and all problems. Just open up a blank page and begin writing yourself into a new life. Escaping the day.

I feel like I'm drowning again.