Well I got an email from the nurse at my sons Dr. Onco Office today saying his spinal scans were clear. Which is a great thing, so one more thing ruled out. Now if we can just find out what it is I will be happy. I hate not knowing what is.
Everything else has been above average. Dylan has been in good spirits and feeling pretty good. He has been able to eat his favorite food, oranges, without being sick so he is ecstatic. He actually spent the night at his cousins house on Saturday, which was a major feat, for us both. He has not been away from my side really since diagnosis in November of 08. I know I am paranoid, but I just HAVE to know he is ok every second LOL But he really wanted to go to his cousins house so I caved. Plus it is literally 1 street over so . . . how could I really say no. Even though I hate him being one bedroom over let alone a whole block haha I guess its time to let go a little. He had a good time, said he couldn't sleep well, but otherwise did ok. I on the other hand did not sleep at all, but took advantage of the time and went shopping for last minute stocking stuffers.
Tonight we went and looked at the lights of the strip and Xmas lights.
I have been feeling kind of lazy lately, sad, depressed and anxious. I want my son to live so badly, but I feel like I am always waiting for the other shoe to fall. I try to live day by day, but it is easier said than done. I hear about the other kids from my support group and I truly feel blessed, but also knwo that things with this disease can change in a minute. And I can't help wondering what the future will hold for my son. How he will die, I just hope and pray that he goes peacefully and painfree. I just don't want him to suffer and I knwo no parent wants that for their child or for that matter any loved one, but especially their child. I do try to avoid that reality as much as possible. It doesn't help that I am feel so stuck somedays. The situation with their father right doesn't help as we are barely on speaking terms and when we do we argue, and if I am being honest with myself, I would be much happier, and they would too as Dylan so boldly explained to me, if we could move on with our lives. I feel like I live in a snow globe of hell. I know I sound like a selfish bitch and I'm not trying to sound that way. I would live like this forever if it meant I can keep my son with me, it is just not, beyond my children, a very satisfying life, nor do I feel it very healthy for any of us. I try to be as positive and what I consider PC about everything, feel blessed everyday for what I have, but somedays I feel down right pissed. My baby is dying right in front of my eyes and there is nothing I can do about it. He has planned his funeral down to the music and how to dipose of his body. I feel my life has become someone elses and that it is so surreal. It can't be my life. These things don't happen, people just make them up to sell movies and books etc. But at the end of the day reality sets in and I know in my heart that this IS my life. And I also know one day that I will have to plan my sons funeral and I hate that thought. I wish I had someone I could rely on. I know there are people that go through this stuff everyday without any help at all. I have friends, I do, but it is so hard to ask them for anything. What can they do, I think? Listen to me bitch again, listen to me cry? That isn't going to change the outcome. No amount of pity will save my son. So why torture them. I try to put myself in their shoes. They most likely would feel awkward, because we all know they can't change whats going on, have never experienced it and therefore have no words of comfort, if they (words of comfort) even exist!! I would feel as if they are knocking on the the snow globe of my life and talking through the little prison-like intercom whispering their "I'm sorry's" and "if you need anythings's" while I am screaming but no one can hear as the sound travels around and around til it exactly mimics the music spewing from the snowglobe. Some "classic" song that gets annoying with redundancy. It just feels not worth it for either of us. But at the same time I feel that is exactly what I need. I guess what I really need is a psychiatrist LOL.
Ok enough for tonight . . .
Today's question to ponder and tomorrows main topic: Is it better to know or not?
Until then happy holiday wishes to all!!!
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