Twice a year I climb up on my soap box and rant to the world about how much I hate time change. Do you know of why I hate time change so much?
"It was a other night that ended in very little sleep. Mr. Emmett was simply unable to fall asleep and he and I camped out in the living room in an attempt to salvage as much sleep as possible."
I'm pretty much totally exhausted this morning. There were frequent interruptions throughout the night because the boys had a hit or miss nights worth of sleep. The boys are just hanging out quietly, which is awesome. I'm hoping for a slow, quiet and uneventful day.
There are times when I really hate being me. In order to do what's best for my kids, sometimes I have to cause them pain. For the very first time in all the many years that Gavin has been receiving IVIG, he made a request of me that absolutely broke my heart. Before Gavin received his IVIG infusion tonight, he said this: Dad, when you put the needles in my belly today, can please make it not hurt... Do you know how crushing that is to hear? 😢 I would do anything to not have to cause him this pain but it's causing this pain that keeps him alive...
Elliott woke up around midnight and was unable to go back to sleep until 4:30am. I'm thinking this was caused by a combination of things but it was partly the result of the fallout from his appointment yesterday. I camped out in the living room with Elliott, in order to try and help him fall asleep. That means I'm going on about three hours of sleep and that's only cause we overslept. Having said that, both Elliott and Emmett were cooperative this morning and we were only slightly late, getting them to school. Unfortunately, I'll have to make a run to the school and deliver lunches because in all the exhaustion from yesterday, I forgot to hit the grocery store. I can't even begin to tell you how tired I…
I confessed last night about how I'm not in the best of places. Today doesn't seem to be any different. Life in general is okay but I'm really struggling with Gavin. When it comes to conversation skills, Gavin has three topics that he talks about: Food Video Games His Super Best Friends It's not like it's on occasion, that I hear about this stuff. It's as though he compulsively tells me about every thought that enters his mind. Those thoughts typically center around the above three topics. I'm so grateful that he can speak. I'm grateful that he wishes to communicate with me. I'm even more grateful that he can communicate as well as he does. At the same time however, he's driving me crazy. Yes, I know it's a…
This is one of those things that I don't expect everyone to understand but if you've had a child experiencing psychosis or an episode of mania, you're probably all too familiar with what I'm about to share. There's such a mishmash of feelings that one experiences when parenting a child with special needs. Aside from loving your child unconditionally, one of the most common emotions experienced is very likely to be guilt. In most cases, this is what I refer to as irrational guilt, meaning a parent feels intense amounts of guilt for things outside of their control but nonetheless impact their child in a potentially negative way. I'm no stranger to this form of guilt and today is one of those days where I'm facing it again. Gavin always…
Gavin was in rare form today. I love him and would do anything for him but there are times it's just really hard to live with him. He would not stop talking the entire day. It felt like he just kept going on and on, without any reprieve. Lizze and I got to the point where we had to simply say stop talking. Even that didn't work because he'd be right back at it a few minutes later. He went on about his missions, his games and it was extremely repetitive. The weird part is that everytime he would tell us something, it was like he was telling us for the first time. That's not uncommon for him to get like this when he's manic. He did the same thing…