Appointment Update

Well, I want to first thank all of you again for the well wishes and prayers. We had the appointment this morning, and saying that I am happy with what we were told would be a lie.

It was a very noncommittal affair, and frankly I wish we hadn't gone. I am so pissed at this doctor right now that I could have slapped her and her nurse by the time I left. Her determination is that Kent MAY have a Hydrocele, not he HAS one, or he has Cancer, or anything that I can "take to the Bank", just that she THINKS he may have a Hydrocele. I mean come the hell on, you have been at this for almost 20 years, and you can't give me an answer that can relieve my brains worry center??

We didn't get the ultrasound that we were told we would be having, instead she scheduled it for June 10th with a followup with her right after. I actually just sat in the office stunned that she wasn't worried one little bit that his right testicle was the size of an almond, and that the left one was the size of a peach, or that all together his testicular sack was the size of a grapefruit.

Are you FUCKING KIDDING ME HERE?? You want me to wait 3 more weeks before you tell me what is wrong with my son??

He will be having surgery at some point though, she would tell me that much. Either to fix what is wrong, or to get a better look at what is going on.

Oh and get this, she actually chided me for being so hard on him about his lack of personal care and attention to his body?? WTF?? I am so sick of his team of doctor's coddling him because he is in a wheelchair. I mean I am trying to raise him to be a man, not a little boy who lives at home so mommy and daddy can take care of him for the rest of his life.

I have to be frank here when I tell you that a lot of Kent's issues are things that if he chose to take better care of himself would not be issues.... Like not taking his blood preassure meds, thyroid meds, or antibiotics for almost 2 weeks. Until I literally threatened to hold him down and shove them down his throat. Without these drugs, he could drop dead.

I have run into this problem over and over with his docs and other people... they look at him and they see this poor kid in a wheelchair, not the inteligent capable young man I know he is. All they see is that fucking chair, and it drives me insane. When people pity him it just feeds into his "woe-is-me" attitude, and makes things so much harder on all of us.

I out right asked him last night how long his testicle had been swollen like this, and he told me he didn't know, maybe like 6 weeks, but he didn't think it was a big deal. He really had no concept of the seriousness of the situation, or just didn't care.

I love this child/young man, and I told him last night after a long discussion in which he told me that he was tired of living his life like this, and how he didn't care what happened to him because it wasn't fair that all his siblings and friends got to be normal, that if he wanted to off himself by way of self neglect, then he better find somewhere else to do it because it wasn't happening in my house.

I am sure that a lot of you can't understand what I am going on about, but it has been so long in coming that I just needed to get this all out of my system. I need this space right now to vent all of the months of pent up frusteration that I have had with him, that I kept to myself. I literally feel like I am fighting a loosing battle here, and I can't seem to get anyone, including him, to take me seriously. All I do know is that I refuse to bury my son because he decided that he doesn't give a shit, and the doctors just refuse to see it coming.

On a different note.... Turtle had a bad day today, and was so overtired by bedtime, that I actually got to sit in the dark and sing my sweet, apple hair detangler scented, exausted little girl to sleep after a 45 minute temper tantrum. As much as the temper tantrum worked my nerves, the fact that she cuddled into my neck, and fell almost instantly asleep when I started singing "Rainbow Connection" to her, made the day just seem all better. God how I love that girl with all my heart.