Moody Mama

I suck. It’s 2 in the morning and I have to be up at 6am and I can’t shut it off. My brain. I got off work at 1130, and I just want to be for a fucking minute. I want to have some dinner and some snacks. I want to read facebook. I want […]

It’ll come back to me. The natural response to blog. I’ve lost it, like everything else. Shell of my former self. Still happy in so many ways though. Definitely still blessed. Just can’t stop that depression from creeping in.

I started my blog in December of 2001. That’s been a minute. I miss it. Posting what I want. When I want. About whatever person place or thing I wanted to bitch about. Now I have to be nice in case someone is reading. Yawn. Might as well unplug it. Except I can’t. I can’t […]

Have a few minutes actually. Life is going a ok. I A N ‘s numbers are holding firm. Slight decrease in the heart function, but not nearly as bad as we thought. He’s starting to read about D uchenne. He’s starting to ask questions and relay tidbits that he learns. It’s raw. It puts those […]

As if anyone is listening. Damn, that’s pitiful. I’ve lost too many friends. I haven’t made enough new ones. Not close new ones. Not ones I can call at 2am because we have so much to catch up on. After not talking for a week. Or a month. Or three months. I could call J […]

Fuck – that’s a lie. I’ve been working in getting pictures of everyone. I haven’t written an ounce of the update itself. We’re going to wing it. I-A-N —-> I A N is doing pretty well, actually. His heart sucks of course, but it hasn’t changed in 6 months. That’s really good. His pulmonary numbers […]

Everyone is asleep, and I can’t sleep. I just got home from work about an hour ago, and I need time to decompress. Sit alone and in silence, and reflect on life. On the kids. On Emily. On I A N. I’m not having a good go of it lately. Every day is a struggle. […]

Jammies. Tight new socks. Freshly shampooed carpet. Perfectly made Dr. Pepper. Delicious breeze blowing in from the window. I A N is awake, but he and I are the only ones. J A s o n had to go to bed early because he has to be in Joplin by 630am. That means his ass […]

Everyone is asleep. Except me – and probably I A N. He’s afraid tonight because his little heart is in Afib again. He can feel it. He’s not one to fake the funk, and the doc said he would be able to tell it when it was going on. But they took him off the […]

He doesn’t have school on Tuesdays due to the infusion of the exon skipping drug, so we let him stay up late on Mondays. Which means one of us has to stay awake because he can’t get himself to bed. I mean, he’s in his bed – but someone has to turn the fan on, […]