You Know Things Are Bad When.....

You know things are bad when a doctor tells you that if he had to choose between Bipolar Disorder and Cystic Fibrosis as the disease his child had, he would choose CF, you know it is bad.

My husband and I share an enormous amount of guilt. Guilt for passing down a disease that is fatal for some, debilitating for others. A disease which every other moron in the world refuses to believe exists. A disease that a lot of people think only adults have, not children, and most assuredly not young children. A disease that no one, not even the doctors who treat it, knows what it is like, unless they themselves have it. A disease that makes you hate yourself, hate others, and hate life. A disease that keep your closest loved ones at a distance, because even though they try to do everything they can to help you, they simply cannot. A disease that is like a pit of deep, dark, black despair, with no way of climbing out of that pit, even if you take the drugs they give you, even if you do the therapy prescribed. A disease that robs a smart, loving, funny seven year old boy of happiness and a life that is not complicated. A disease that robs his father of any real joy, because he hates himself for passing on this disease, even though he is not the only one in the family with it. A disease that leaves the ones who do not have it, in a constant state of stress, despair and guilt.

I live with this disease every day. I have a husband and a son who suffer from it. And I am not being dramatic when I say they suffer, because they do suffer.

I get to be told that I am a worthless parent, that my son would be just fine, if he had a little discipline. I get told how parent my child by well meaning grandparents, who have never had to raise children with an illness this severe. I get told that my mother thinks I am unnecessarily cruel to my child, because most days I am on the brink of falling apart, and I am very strict with him, or not strict enough depending on the day. I get told by a school district who thinks I am pulling shit out of thin air, that my child is a problem and cannot be at school until he has been hospitalized, even though they have not a clue, nor a medical background to draw from. I get told when my son does something any other seven year old might do, argue with a friend about a game, because they want to make sure he is "ok"--translation that he isn't going to go nuts at school. I get asked if everything is ok at home. The insinuation being that he must be from a broken or dysfunctional home that breads bad seeds. I get to worry about my child being taken from me, because the school district, school administrators, and school nurse think he needs to be doped beyond the realm of normal, and I refuse to have a zombie child. I get to take my child to a hospital full of children with physical disabilities. Things like cancer, and diabetes. Things that because they are seen, people believe they exist. But because this disease is in the chemistry of his brain, under his skin, skull, and cerebrospinal fluid and therefore cannot be seen, so it does not get taken as seriously by some.

This is only a part of my life. However this part of my life, is much more stressful then other parts. I am so stressed at the moment that I itch all over. Some would ask, why that was a big issue. Well I have had shingles once this year, after being particularly stressed over the holidays. Shingles can flare up when you are under great amounts of stress. They are painful, and literally your skin feels like itchy fire. Did I mention I itch in various spots, so intensely, that I have welts? So I am worrying that I will get those, and thus feel like shit when my trip comes up.

Oh yeah the guilt for going on a trip without them is enormous. So much so that I half way feel like I should cancel, but Rob says I need to go. I worry that I will come home to the two people who I love most in the world, and they will be different somehow. Not a good different wither. I feel guilty for being selfish, because I want to go. Badly.

The past two days have been craptastic. I just want some normal, even though I know there is no such thing.

Well I must go scratch myself--my legs, my arms, my face, may back. Yep, each day is better then the next. Heh.