nighttime horrors

They're back. The nightmares. They were gone for a little while. Just long enough for me to forgot the sound of my blood pounding in my ears when I wake up from them. Just long enough for me to forget the feeling of dread I get when I go to check on Carsyn to make sure my nightmare has not become my reality. I'm afraid to sleep. I don't want to think about losing Carsyn, I definitely don't want to dream about it every night. I'm afraid that one day my nightmare will have become a reality. I think this is the case with most parents with a special needs child.  Remember the movie Mask? The one with Cher in it? I can't even watch that movie, because all I can think about is what I would do if that happened to me...

After messing with medications Carsyn is now going on six weeks seizure free. The new doctor we are seeing took him off his klonopin. The medication his old doctor said he would never come off of, and put him on Onfi. It took a long time for it to take effect, but now everything seems to be good. Now if only we could get this boy to gain weight.

We recently saw Senator Young about the legalization of medical marijuana and the people it would help. She seemed hopeful about what I want to do. She told me to look for a doctor willing to experiment with it. <3

Also, We are looking into acupuncture for Carsyn. I was told this may help with his muscle tone. fingers crossed that we can avoid another surgery. I don't want to see him go through another one unless its absolutely necessary. He's been through too much. A six year old shouldn't have to go through so much.

I just wish I could help more. I wish I could take this away. Take his pain away when he's in pain. I would trade places with him in a heartbeat. That smiling beautiful little boy of mine deserves so much. I'm hoping to give him that. I want to take him to as many places as possible. Let him see the world. Meet as many caring and beautiful people on our way. maybe even change the way people think about special needs kids. I want to do so much for him. Most of the time money is the only thing stopping me. I keep wishing that someday I'll make enough to do all of this for him. I want to build him his own therapy room, bedroom and bathroom in our new house. I want to get him a fish tank with lots of marine life. I think he'd like that. Right now I don't have the funds nor the room for that. Maybe someday soon. I want to do his room up nicely. All four walls will be something he loves. one wall for rascal flatts/cars (movies), one wall for monsters inc. the third for another Disney movie (the artist that's doing the walls know which one) he has so many i forget which we chose. and the third would be his lion king/finding nemo. There will be Simone, Pumba and simba all walking across a branch over a river with finding nemo characters jumping out from the river. I'll have glass case put in for his signed rascal flatts things from our trip to see them, his hunters hope bear from when he met Jim Kelly and His pictures with the senator along with an elephant statue that was my great grandmothers because he likes elephants so much. I have a plan. I just need to get there money wise.

I also found out it's much cheaper to change a last name than I thought it was. Hello, Carsyn Andrew Kelwaski. Goodbye, Rockwell. SOON. as in very soon I hope. again. Need to get the funding. but I WILL get there. I will do this for him. Because he deserves it.

<3 <3 <3 So until next time (I shouldn't post this. but after a year with no okay I'm fed up.)

These guys were about to go on stage for their concert in West Palm Beach, Florida. So they were being very generous when we asked them to sing for Carsyn. they were amazing with him. They treated him like the special little boy he is. Which is all I could have asked from them. Rascal Flatts are an amazing group of guys. I am forever grateful for what they, and make a wish did for Carsyn. <3 :)