In the days since we've gotten the diagnosis, the idea that HD is our new reality is sinking in slowly. My mom has been laying low. She says she feels like she has the flu which is understandable. I'm sure the stress has taken a toll on her body. I haven't yet had the bigger conversation with her about where we go from here, but I wanted to give her a break.
Each time I talk to a friend or relative about the results, it gets a little bit easier. I'm almost at the point of not crying every time I talk about it. (And I'm a crier so that's a big thing). Last night I slept deeply through the night for the first time since we heard the news. I think the nights of tossing and turning have really tired me out.
I've started to contact support groups, social workers, doctors and anyone else who will talk to me. I need some direction. I don't know what the next steps are. I have no idea what I'm doing. I don't really see myself as a "grown up" in that I generally still have to call my dad when I have questions about the real world. But I guess this is how you "grow up".
There are a few reasons I wanted to start this blog. The first is because reading other HD blogs has helped me and hopefully my story will help others going through this. It's scary to see what the future might be for us, but it's a nice feeling to know we're not alone. It's also positive to see that something that starts off as being so horrendous and all-consuming eventually just becomes part of your life. It's a reminder that my world won't always feel so utterly shattered.
The other reason I wanted to start this blog is that I have naturally always been the type of person who hides my feelings away. I generally hold things inside and put on a smile and then, of course, eventually fall apart. I don't want to do that anymore. This is something that I need to force myself to talk about. I think putting my story out there will allow everyone (including myself) to be more comfortable with talking about something that is so unpleasant. I will be an open book. I will answer any questions along the way.
I don't know who (if anyone) will read this and follow our story, but I hope it leaves some sort of impact on the world. And I know that this blog isn't the most fun to read (honestly, I'd probably prefer scrolling through literally anything else), but I'm hoping that it can help not only my friends and family understand what is going on, but that it also brings a bit of comfort to total strangers. There is no reason to hide it away. This is a disease. This is a terrible, terrible disease. And, without talking about it, we can't push forward.