From time to time, people will say something to me along the lines of:
"I'm sure none of us know what you deal with when you're all alone."
And of course, that's mostly true, because....well....I'm all alone when I'm going through it. Even if Chris is there and it's dark at night or something, I mainly keep my thoughts to myself. There's no sense and being all doom and gloom all the time. What's the sense in that? I'm a "glass half full" kinda gal, and I don't generally subscribe to negativity.
And honestly? it's not "doom and gloom" for me all the time anyhow. She's doing really well, all things considered. I don't dwell on what she was or what she won't be. There are times (especially weddings) that are particularly difficult for me, but that is not often. Sometimes, I think people think I "put on a good face" out in public, but when I'm by myself, I'm all sad and weary and "torn up" (as Southerners say).
So, no, just to set the record straight, that's not the case. Michaela's brain is a part of my life (it's not my WHOLE life), and I've accepted it and moved on. Taking care of her is like changing diapers....just a part of having kids and living life.
But something happened this morning that DOES fall into the category of "what I deal with." I thought that I'd share it with you. Mainly because, it's probably the ONLY thing that I deal with with any degree of frequency:
Michaela slept in this morning.
I know, that sounds crazy....what's the problem with that?? But what you don't realize is that she rarely does that. Even if she goes to bed very late, she still tends to wake up with the sun. She's been on vacation these last two days, and I haven't been waking her up for school, but she woke up at like 7am yesterday. That's pretty typical.
So, here's the problem. My biggest fear, my biggest worry, my greatest concern with Michaela is....
..... that she will die in her sleep.
It's the one thing that I've prayed A LOT about. Begged God to not let her die that way. Even if it's an easy way to go, I just don't think I could handle finding her that way. I don't like surprises and that would be the ultimate horrible surprise. And with her frequent seizures when she's sleeping, it's not a far-fetched concern.
Not that it definitely WOULD happen, that's not what I'm saying. I'm just saying that my biggest fear revolves around her passing away from a big seizure in her sleep. That her heart would just give out and she'd be gone. Even if the possibility is like, 1%, it gets magnified in my mind when I'm alone.
And when she decides to sleep in.
See, it doesn't JUST happen when I'm alone. She has to sleep in too. When that happens, then I get upset. I keep it to myself, but it starts to get me really worried.
Like this morning. The kids were letting me sleep in by getting their schoolwork done quietly. However, someone made some kind of loud noise and I figured it was Michaela. I jumped out of bed to look in her room, but the loud noise wasn't her.....she was still laying in bed. I went back to bed and just laid there. It was WAY too late for her to still be that asleep. She was very still and not moving in spite of the loud noise. Why is she still asleep? I just laid there, wondering.
Now, the logical thing to do would be to go in her room, put my hand on her chest and see if she's breathing. Duh. Yeah, I know this. But rationality goes out the window when it comes to fear. And in my defense, I try not to act all irrational by going into her room and potentially waking her up when she's sleeping peacefully. After all, she DOES have seizures at night. That's pretty exhausting for her. Why not sleep in every once and a while? It's good for her.
But every time she does, when I'm laying in bed and it's obvious that everyone else is awake BUT her, my mind starts to run to the negative. To the horrible.
I think I've planned out her entire funeral at those times.
Just to prepare myself for the worst. Since I hate surprises and all.
And then, next thing I know, she's up and moving about, back to her job of creating art out of every toy we own. Acting like she didn't just give me 5 new gray hairs 5 minutes ago.
And once more, I'm fine and the fear melts away. Until she sleeps in again.....3 months from now.
So now you know what I deal with when I'm all alone.
(No comments on this one, gang. I'm not looking for sympathy or thoughtful words. Just wanted to let you in my head for a bit. I'm ok and all, so thanks for reading....and caring :)