ANXIETY ON FIRE

There might be two posts today it all depends on what happens this afternoon.

Today we meet with the genetic neurology and metabolics clinic with the neurologist who came to the belief Charlie had Leigh’s. We technically at this point have not had a confirmed diagnosis. Today we find out the results of the last of the mitochondrial blood work.

I have so many feelings right now. I’ve been dying for this appointment for so long and the last couple of days the closer we got the more anxious I got. Freaking out about weird things but the core of it is this appointment. My anxiety is burning full force like nothing I’ve ever felt before.

I wanted it. The appointment. I wanted the closure. It took so damn long. I wanted to confidently say we lost him to Leigh’s and then begin our journey of what to do with that information. Find out if Riley is a carrier or one of the rare exceptions that has the active gene and could have it develop as an adolescent or teen. (So incredibly unlikely so I’m not REALLY fearful of that but weird things happen to us so I’d rather not get blindsided again).

But where the fear is starting to set in is two things:
The gut feeling I’ve had since the hospital that despite all evidence pointing this way that Leigh’s is not the answer

But here’s the thing. They told us because of Leighs there was no saving him. There is no cure for Leigh’s just steroids to help manage the symptoms which might get you another year or so but he was too far down the road. The steroid treatment made little difference and his lungs were giving out and Leighs would never let them recover. So we had to say goodbye before his heart gave out too. So he could leave peacefully without pain. But what if it wasn’t Leighs…If I found out it was something that could have been treated I think I’d die. I know that he couldn’t have survived this long for us to find out. I know that. I know his MRI was bad. At least I remember it that way. Our family doctor says with the limited information she has he was really sick and nothing could have changed. But if that’s not the diagnosis how can we confidently say that. What if we did another course of steroids because we did see some improvement for a bit…

Also I still haven’t shared my full reiki story around Charlie but it’s coming in another post. After he passed though, I had another session with my friend and while I was there a thought ran through my head like a voice telling me “It’s not Leigh’s” “It’s not Leigh’s” as this was circling in my brain quietly, Michelle said out loud she was seeing a message of me angry. Full on rage. Something with doctors and demanding answers. “F***” I said I know what it is I’m not going to have my answers I just know it. I don’t know how but I know it.

I hope I’m wrong. But then at the same time this realization too as we’ve gotten closer doesn’t really feel like it will bring that much peace like I hoped. Because it doesn’t change anything. If they are wrong I have a place to put my anger but it doesn’t fix anything and if they are right…well then I don’t have to have questions or doubts but…it doesn’t fix anything.

I think I hoped with this information I would do something with it. Become and advocate for Leigh’s disease research and treatment and awareness. Because I feel like something needs to happen. His death has to mean something otherwise it’s just pointlessly unfair.

But I’m realizing it still is just pointlessly unfair anyways.

And the realization of that and the fact that it doesn’t fix anything makes me wonder if it really will bring any actual level of peace or does it actually just dig and rip apart out hearts more as we relive the experience.