My Son

My son Nicholas Jeremiah just turned 10 this past July. He has medical problems that he sustained during delivery. He has brain damage, seizures, blind (even though I question that), deaf (question that too), has a treach to help him breath, feeding tube, osteoperosis (spelling on that one), can't control his temp (his room is HOT so he doesn't get cold easily), and several other issues. Very screwed up little boy. He stays in bed mostly and can't do anything for himself. I say he is borderline vegatable in a sense but he does react to things like a pricking of the needle or when I mess with him and he wants to be left alone. He moves his arms and head and turns his face red when he is annoyed. Just recently he was put into his on private room which is good for him so his room can be like a sauna. Before he was in a room with two other beds, he has had roommates and only one was similiar to Nicholas with the temp thing. But his roommates come and go because the room is to hot for them or they move home. So being in his own room is very beneficial to him. It's a Nascar room which my dad will love. Definitely a boys room. He is doing very well and hasn't ad any major issues like seizures. He had some problems with seizures in the past but that is under control for now.

It is hard sometimes with him living 4hrs away from me but he is where he belongs. They take good care of him and I am appreciative of that. I have lived up there before while I was going to college and loved seeing him everyday, but it is not my place to live. Maybe down the road, but what I really want to do is move him home or at least closer. The only problem is there is nothing close that will take him. If I had the money I would buy a house that would suit him perfectly but I would need money for a round the clock nurse and that is where my problem lies. For now I am happy he is there but I still get sad when I have to leave him. It is a bitter sweet visit every time. The only thing I can do for him there is organize his closet, I feel like a real mom when I do that and I hate disorganization which is all in that closet. Drives me nuts when I go up there. But that room is so hot I can only stand about an hour in there so I have to leave and come back and leave and go back. It takes me about an hour to organize that closet, he doesn't have much to organize.

No one ever truely understands my situation until they go and visit my son with me. The last time I was there I took a former friend's two boys with me and I started crying some while I was there. I don't know why. I was happy the boys got to go with me and I was happy to see my son but the boys were asking questions and I have never had to talk to children about it before and help them understand. I don't know what came over me. I haven't cried about Nicholas in a few years and that was when his seizures were bad and before that is was when Nicholas had first gotten there and I cried everytime I left him for the first 2yrs. I am better about not crying when I leave even though I could. While typing this it is making me tear up a bit. I am fine just a lot going on with me besides my son. We will talk about that another time.

So that is my son and a BIG part of my life. There is more I can say about my son but its not that exciting it's actually a bit depressing, like his father isn't around and never cared or my parent's mostly my mother not being supportive. You know things like that. I might talk about those things later but not tonight.