I have a hard week coming up. Most of my weeks are hard to begin with, but next week we’re going to be entering some new territory, and I’m just not ready for it. I don’t know how to talk about it, I don’t think I even know how I feel about it. The reality is, my sons have a genetic disorder that will soon strip them of their ability to walk, play, run, any of the things we want our kids to be able to do.
I have an extremely hard time talking about the kids with my husband. He feels pain over the situation and I don’t want to add to that for him. Even though he understands the situation better than anyone else, I just don’t know how to talk about it without hurting him. So I just don’t I keep it locked up and just try not to feel it.
Even here and now, typing this, I can’t find the right words. Our situation sucks. It’s painful and it still doesn’t seem real. I tried convinced myself that this wouldn’t end up being the worst case scenario for a long time, but that’s exactly what it is.
Monday is going to suck and I don’t want to do it. I guess it’s just that simple. I feel alone in my grief over it, I feel unsupported, and I feel like this particular event cements in our grim reality. Frankly, it’s bullshit.
I haven’t told anybody about this yet, my husband is the only one who knows its coming. My parents disagree with the decision and I know they will give me a very hard time.
My son on the other hand…he is ecstatic. He thinks this is the greatest thing in the world. I’m glad he does. Both of my kids have spent their entire lives in therapies. They have no reason to believe that their lives are anything but normal.
Let me emphasize this very clearly here: their problems are purely physical and have no intellectual component to it whatsoever. My older son is in fact getting IQ tested because he is so incredibly smart for his age. They think he is “gifted”, or however they phrase it nowadays.
I say that not to say we are “better” than anyone else, but so that it paints the picture of their understanding of the world. The day will come, I believe very soon, that my kids will realize that we have differences. I have already had many difficult conversations with C (my 4 year old) this year on some other painfully difficult topics, and I was not prepared for it.
Historically, I don’t handle particularly difficult situations very well. I tend to, you know. Alcohol is the clear and easy solution. Right? It’s painful…so just like…don’t fucking think about it.
Except that’s not working for me anymore. Well, it is, but maybe it worked a little too well.
When I can’t talk about these things in the way that I need to, things go from bad to worse with me.
I’m worried about how I’m going to get through this next week. I don’t know how to talk about it, despite desperately wanting to. I feel alone in it, and it’s terrifying. It’s a heavy burden to carry alone. I wish this wasn’t so painful and isolating.
This isn’t the week I want to drink myself to death. I hope I’m stronger than I give myself credit for this week.