Today is not the worst, and I consider that a success.

Today, simply put, is not the worst. Pregnancy mixed with my less than stellar heart caused me to feel really sick and pass out this morning, but other than that…it is not the worst day.

I had some intense anxiety when I woke up this morning, but I managed it. I’m trying so hard not to let the anxiety get the best of me and turn into anger and frustration, but that is so, so, hard.

Todays battle is with exhaustion. I am feeling the effects of all that life is right now, and that is physically and mentally exhausting.

At the geneticist the other day, I learned that this baby actually has a 50/50 shot at inheriting this gene from me, the one that causes the genetic disorder in myself and my 2 boys. Those are actually better odds than we thought he had, seeing as all 3 of us are pretty severely affected by it. I have to get an amniocentesis next week, and it will take a few weeks to get the results from then. It is killing me having to wait, but I’m glad I’ll have an answer one way or another.

I think the thing that’s helping my mood the most right now is the fact that my parents are going away this on vacation this week. I know, I feel like I sound like a teenager when I say that, but it’s true.

Unfortunately, due to the absolutely devastating financial strain that comes with raising (at least) 2 sons with muscular dystrophy, we still live with them. It has taken us a lot longer than anticipated to save up for our dream (handicap accessible) home, and especially with the housing market being what it is….yeah.

There’s plenty of room for the 4 of us and my parents, but this new baby challenges that. And I don’t want any of my kids to have to share a room. That’s why I’ve been more stressed than usual, because I feel an enormous sense of urgency to have my own space before, or soon after, he gets here. It’s been incredibly stressful.

Anyway, my parents and I do not have the best relationship, but my kids love them, and they love my kids. And honestly, my dad is helpful and generous with his time when I have to take one kid to a doctor appointment and leave the other behind. So I do greatly appreciate that.

But other than that, my parents make no secret that they…um…disapprove of me. My entire life, they neglected and ignored me medically, and on top of the physical and verbal abuse I endured constantly from my sister…? Yeah, it was a bad situation.

They believed anything I said medically was a lie and that I was faking. That, and they just didn’t have time for me. I was not a priority, my sister was. Even now, confirmed with genetic testing and everything, they still do not believe that there is anything wrong with me or the kids. (My 5 year old just has a power wheelchair for nothing. They both wear AFOs for fun. And they both have hours of therapy every single day because we have nothing better to do. Clearly.) 🙄

So yes, our relationship is strained at best, toxic and abusive at worst. Having the house to myself to parent the way I fucking want to without the eyes of judgement cast upon me by my dad is so fucking freeing.

I’m just more relaxed. I’m free to be me, to be more fun and …just less stressed. It’s a burden lifted off of me for sure, and I feel like I will be able to breathe easier all week long.

I’m trying to hold onto this feeling of…ease, I suppose. I don’t know what exactly it is, but right now, this second, this moment, I’m not controlled by anxiety, or overwhelming sadness and defeat, or anything.

I think I’m just simply existing.

And for today, that is a win.

I’ll take what I can get, and hope it lasts for just a little longer.

4 thoughts on “Today is not the worst, and I consider that a success.”

  1. That’s fucked up that your parents pretend not to believe that the three of you are affected by a serious genetic disorder. I can’t imagine what it would be like to be inside the head of someone that ignorant.

    1. Yes, it’s very frustrating. With me, they just think I’m full of shit. And with the kids, the just don’t want to believe that anything is wrong, because that would be a painful realization, and we do NOT do emotions or communication in this house. 😜 Or at least, they don’t.

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