Hard Times

I've been having a hard time the past week or so. I just feel so blah if you know what I mean. I'm a planner. I think ahead not just to next week but like 5 years from now. That's really hard to do with a special needs child. I don't know what Noah's abilities will be. I know he's not the easiest to travel with but I don't want to leave him out of everything fun that we take Oliver to do. It just makes me sad. I don't have any other word to describe it.

And then I get mad. Not mad at any person, place, or thing. Just mad. Mad at this situation. Mad that I can't fix everything. Mad that Noah is hurting and I can't do anything about it. Just mad. I will never understand why this happened to my child. But I will promise you that, that will be my first question for God when I get to Heaven. Simply, "Why?" Why does our life have to be so much harder? Why does our baby have to suffer? Why do bad things happen to good people? We will never know these answers in all of our days but I still can't help myself from asking. And it sucks that I can't figure it out. People say that special needs children are given to special parents who can handle them. And they tell me that to make me feel better about myself. But I'm just not sure I believe that. I am such a flawed human being and I try to be the best Mother I can but I certainly don't see myself as "special." And if being special gets me a sick baby then I don't want to be special anymore. I just want Noah to be healthy. I don't want him to be sick or hurt or sad. Even if I could just get a small glimpse of the future and see us together as a family. Just to know that we are going to be okay. That our life will eventually even itself out and we will fall into a familiar groove with each other. Right now I feel like we are living day to day, just getting by. Trying to keep our heads above water and survive. I would like to know, really know, that it won't always feel like this.

There was my little rant. But in other Noah News, he had an EEG test yesterday. The test checks for seizure activity in the brain. He had to be hooked up to 23 little wires all over his head. He was not a fan. Then they record for 25 minutes. We watched Franklin to pass the time. Then the last 5 minutes of the test he had to look at a strobe light while it flashed 10 seconds on, 10 seconds off. He actually really liked that part and smiled every time the light came on. He's such a silly kid. The doctor has to read the results and then call us back in for another appointment to talk to him. I don't really think he's having seizures. It's just something they do as a precaution since he is having the muscle spasms. I hope we can just get him on some medication to help with the spasms to relax his muscles and make him more comfortable. Here are some super cute    if I do say so myself    pictures of our EEG adventure.

Robot baby!

Laughing at the strobe light.