May 20, 2009

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.


Dora said...

As someone who has been involved with a disabled man who sometimes neglects his health, I TOTALLY UNDERSTAND!!! We should not have to nag them about these things. Sorry the dr was such a jerk and that you still don't have answers.

Aunt Becky said...

Oh I get it completely. Ben gets coddled all the time and he doesn't need to be. Drives me bonkers. Trying to raise him right means he needs to learn to take care of himself.

Erin said...

I get it completely, even though we don't have a comparable situation. I wish you'd been able to get the answers that you need today! ARGH!

My Reality said...

Well that appointment was helpful.

I can't believe the doctors give you grief for pushing Kent - you know what he is capable of and really, shouldn't the doctors realize that taking care of himself is in his best interest?

I hope the next few weeks go off without any glitches and this turns out to be something like a hydrocele.

Thinking of you lots, my friend.

Anonymous said...

Firstly Rainbow Connection is one of my favorite songs and is on my Ipod playlist..sad huh?? Next the Dr needs a slap and some bedside manners did she eat an extra bowl of insesitive and stupid this morning. Third Clark and my evil Teen should move in together....their combined smell might shock them into some nice cleanliness@@ Breathe deep hon (just not near the smelly boy creature)

Anonymous said...

You do know I meant Kent there (sorry Clark) :-)
Tesi (who is going sleepies now so she doesnt sound like an insane sleep deprived nut job anymore)

Anonymous said...

Oh I can relate in a different we dont have the 'chair' here but I am so sick of hearing well Jorge went through this and Jorge went through that, poor kid... Umm yeah OK...he went through a lot but he has had a good home for over 5 yrs now.. he has proven himself to show perfect behavior in school, why cant he do it at home? He is stealing, lying, out of control and if I hear well he cant help it one more time I am going to start walking in circles talking to myself and reply, well Ive been raising him for 5 yrs, woe is me! UGH hang in there..prayers its nothing serious.

Wishing 4 One said...

I have nothing to relate to your experience but you know what I get it. I get how you feel and know that your thinking is because you want him to grow up to be a strong man and prepare and teach him that the chair does not define him. Thinking of you and hoping you happen upon a doctor who gets it. xoxoxoxox

Poison Ivy said...

(((Girl))) Sounds like you have been having it very rough. Hang in there sweetie! We are here for you. Doing the right thing is rarely easy. You are a great mom to both your children!
45 minutes on a temper tantrum....minor leagues! LOL You have heard mine go on for a bit That is why I say that! LOL