Look I’m going to be completely honest. Everything has gone down hill for me this evening. I thought I was holding it together but I’m done. Gavin is driving me absolutely CRAZY. He just can’t do anything like he’s supposed to. I’m only talking about things I know he is capable of. Simple 1 step tasks seem like we are asking him to reinvent the wheel. He stalls and stalls all the time instead of just doing what he is freaking asked. Everything seems like a game and the game is manipulation. I swear he plays head games with ER. He wants to play then doesn’t want to play. If he does play he is the only one that is allowed to have an imagination. Anything ER imagines is quickly shot down by Gavin because “it’s not real”.
As a parent it’s hard to watch this happen. However, if I’m going to be completely honest, it’s harder for me because ER is my first born. I raised and finally adopted Gavin. It’s just not the same thing. I know how it sounds believe me. I also know how big of a monster it makes me feel like. It’s the truth though. I have this overwhelming instinct to protect ER from Gavin. I have to be extremely careful not to play favorites but it’s getting harder. EJ never really interacts with Gavin but when he does it’s the same thing. Gavin actually complains when EJ cries. He actually complains. I realize it’s probably sensory but HELLO, WE ALL have to listen to and feel every single one of his God Damn meltdowns. I just want to scream “hello pot, meet kettle”.
I sound juvenile but I can’t even explain how overwhelmingly frustrating it is. I just get to a point where I can feel myself cracking into pieces. I don’t know how we are supposed to know what to do? Who do we cater to? I don’t see a way to do this without “playing favorites” so to speak. Sometimes I feel like just giving up. Nothing I can do will make things any easier for anyone. Gavin is always going to be difficult. Elliott Richard will probably always be trying to connect with his big brother even though he just keeps getting shut down.
I have no idea what’s going on with Emmett John. Will he ever talk? Is he going to regress and slip away like Gavin? This scares the shit out of me every single day. Are we doing enough of the things right that we are making a difference? How do we even know? The children’s hospital still hasn’t gotten the paper work to get things started. That paper work has been faxed at least twice by different people and even mailed weeks ago.
All of this makes Lizze’s condition worse. Fibromyalgia feeds on stress. Our lives have become a freaking all you can buffet for it. There is no way to take her pain away or even make it better, even a little. This kills me. It’s like waking up everyday to a nightmare.
One of the worst parts is that I KNOW very few people actually know what this feels like. I hear how things could be worse. Worse is a relative term, it’s different for everyone. For me I feel like at times we have finally hit rock bottom only to have the floor collapse and we continue to fall. I don’t want this for my family. I wouldn’t even want this for my worst enemies family.
There are times in dealing with things that I think everything just might be ok but tonight everything just seems to be falling apart around me. The things we need to help us just aren’t available. At this point I have talked to some of my family and asked them to get certified as care givers. Then instead of complete strangers getting paid to provide respite, family can get paid to do it instead. I’m hoping someone agree’s to do it. Everyone is living there own lives though and we don’t always fit in. The kids don’t have nearly the relationships with my siblings that I had hoped they would. We are the only one’s with kids. I had hoped that my brothers and sisters would be active parts of their lives but they aren’t really. That hurts. We need a break. That’s the best help we can get right now but it’s also the hardest to come by.
Thank you for sharing our lives. LT