Thursday, January 28, 2010

H. A. T. E. it

We are back at Children's hospital. Been here since Sunday. I am tired and emotionally drained. Nothing seems to be getting better. He has had less seizures today, but he is now unresponsive and hardly able to talk. He is constantly twitching and shaking and can't seem to make his mouth form the words he wants to say. It is so completely heart breaking. It's heart breaking just being here, because of course he is not the only child with a problem of some sort nor is he the worst. Hearing the crying babies night and day is really getting to me. I have my little Strawberry with me because she needs to nurse and my other two boys are at their aunties because daddy has to work. I miss them so much is hurts. I hope to see them tomorrow here at the hospital as it doesn't look like we are leaving any time soon. I hate this. I hate the seizures. I hate the medicine. I hate not having any good answers. I hate our family being spread around. I hate not kissing my other two children to sleep at night. I hate the beeping and the noise. I hate the 'completely out of control don't know how to fix this' feeling. I freaking hate it all. hate. hate. hate. It's a strong word that I generally refrain from saying. hate. hate. hate. It's the only word for me right now. It's hard not to be angry at everyone and everything right now. I know that is not rational and I am trying so hard to be pleasant to the doctors and nurses, but I feel the angry bubbling and I can hardly swallow it and smile. I haven't had the best experience here, and I often feel like even though they say they want to know how I feel or answer any questions I have they don't really. Not really. They would rather I smile and nod...and that's just not me. Never has been, never will be. I know he needs the medicine to stop the seizures and I know that it's trial and error right now for what one will work and how much, trust me I know this too well by now. But I'm not going to say I like it, or feel comfortable with some of the medicine they are giving him because I'm not. I'll do what they feel is best for him, but that doesn't mean I'm going to like it. Medicine that has never been studied in his age group? Yeah, I don't like that....don't like it at all...two meds together that aren't studied in his age group? Yeah, I don't like that either. Now my child is a zombie, I can't get him to talk or smile. I want my Atty back. Please God just let this end. Give me my Atty back. I'll take it, all the wild and craziness, I truly don't mind anymore. I don't want a zombie. I want Atty. And I want to go home.


MyLitter said...

You are so brave. I wish so much I was closer to you so I could do something to help. What do you need? I can't even bring you dinner. I could watch your kids.
My prayers are with you. I am so sorry.

Brittany said...

Ohhh honey! We are praying like crazy! I hope atty gets better! Poor poor baby! Stay strong mama! You'll get through this!

MGM said...

I'm so sorry to hear how this is all going! What a helpless feeling it must be! I wish I were closer to help as well! Fortunately distance does nothing to water down know that I'm praying for you and your boy and your family and the docs to know what is best for Atty!

Kat said...

Oh honey, I am SO SORRY. I just read your last post too, and it is just SO MUCH. So much thrown at you all at once.
You are so brave and so strong. I admire you so much. What a wonderful mother/wife/woman you are.
I am praying for you, for Atty, for the rest of your family. I am praying and praying.
Hang in there. God has you in His hands. He really does.

Lisa said...

I am so sorry Miriah. How is Atty doing?? I wish I didn't live across the U.S., because I would be there for you. So please know that I am praying for you and your family, and for little Atty. Love Love, Lisa

mommytoalot said...

Oh no. I am so sorry Atty is going through all of this. I am so sorry you are away from your other boys.
You and Atty remain in my prayers