so much for safe mode... I'm the equivalent of a hard drive melt down. Ctrl, Alt, Delete all you want, there's no rebooting this situation. Tears roll down my face numerous times a day when I'm alone, and sometimes when I'm not. I was sleeping four hours a night for a while, unable to sleep. Now I am going to bed early and waking up ten hours later feeling exhausted, empty, and wishing I could just stay in bed. I feel like throwing up almost all day, every day, since Billy's phonecall from prison.

I still haven't taken back up smoking, I quit back in March... I get sick just thinking about smoke going into my system right now, but at the same time I'm craving any kind of mental calm, even the plastic calm of five minute oxygen deprivations. Meanwhile there's that constant voice inside me yelling at me to stay strong, don't give up, blah blah blah... I keep cocking an eyebrow at that voice and asking it to go ahead and give it a shot if it wants to, because I can't. Then it hits me that as much as I think I have given up, my actions throughout each day suggest I haven't... I keep reading and making phonecalls, still in a search mode of sorts. Here's the websites I've found somewhat informative/helpful:



http://cms.psychologytoday.com/articles/pto-20020301-000035.xml

http://www.cabf.org/resources/

http://www.bipolarhelpcenter.com/index.jsp

The more I read, the more I begin to feel that a lot of money/resources and time have been spent coming no closer to an understanding of mental illness of this kind. And I know for certain that if it goes unchecked and unbalanced it leads to far worse situations for not only the person with the condition, but also those people around that person. Nikki's father is a testament to that, as well as my brother and mother. I know this from personal experience as well as from reading up on numerous cases where the "system" got baffled and just shifted cases around without definitive diagnosis and treatment plans that did not work (perhaps because the diagnosis was incorrect or nonexistent) and in most worst case scenarios the 'fad diagnosis' of the year was put upon the patient (adhd, add, bipolar, and this year's favorite, BPD) which is exactly what has happened to Nikki. She has been diagnosed, at one point or another, as having each of those. So which is right? Are all of them wrong?

And of course we find that there's still a stigma and fear of the word 'schitzophrenia', as if it's a dirty and damning word... I'm sure words like autism and md got that same stigma for a while... but it's not gone unnoticed by most that some of her behaviors and thought patterns don't fit the bipolar/bpd, adhd/add, or any other fad diagnosis. And I'd like to see it at the very least ruled out as a root cause, or, if it is the case, diagnosed and treatment begun immediately, because in each case of successful treatment it is stressed that early diagnosis played a key role:

http://www.mentalhealth.com/book/p40-sc02.html#Head_12

I am not afraid to acknowledge this if it is the situation. I would prefer it be ruled out and not be the case, because I obviously would rather her situation be a little easier for her to rise above and take control of, and schitzophrenia is neither easy or completely controllable. I was happy to see that Nikki didn't exhibit at least one-fourth of the symptoms. It gave me hope that she very well may not have such a hard condition to cope with. But after talking with Billy about his mindset at Nikki's age, I am concerned as he talked about the exact same things in his head that Nikki has discussed happening to her. I thought most of Billy's condition was environmental; I can see now some of it was not. I can see now that it's probable my mother also did not become the monster she was because of just her environment, but more likely was born into a mental condition that caused her to destroy her own life and the life of those around her with little control over it. If anything positive has come of any of this it is that I am beginning to feel compassion for my mother, whom I suppose put up as big of a struggle and fight against her mental illness(es) as Nikki has. I also feel Nikki has a better chance than my brother did because I lucked out genetically and didn't get the genetic deviation my mother got from somewhere in her family tree. My brother and mother suffered at the mind of each other, it appears, both caught up in a mental illness that led both of them to make the most destructive choices of all. My mother's abusive behavior only increased an already hostile mental state in both of them. And in living through that with both of them, I got my own mental weaknesses and breakdowns, which I guess is why I feel so ready to give up. But because it's her I can't. Even though I want to get away from all of it, from all of them, the same parts of me that wouldn't allow me to give up on my own life are forcing me to carry on and not give up on her mental stability and potential for living a great life.

But I am really, really, really tired. I don't think I've been this tired in my entire life. Somehow I am not sure if this is just some kind of joke life is playing on me? Because at every turn something else odd and surreal happens, as if a test of my own endurance. Whenever I think that, it makes me more determined to do whatever it takes to help Nikki, because I refuse to have her be the punchline of a bad joke. I refuse to allow any of my kids to go through more than they should have to go through in any battle life hands them. The system has got her in a fucked up limbo state of not-sure-where-you-are-going-next, a shitty state for any kid to be in. She's willing and ready to see this all through and do the work; I wish they'd give her some hope instead of pipe-dreams of coming home and miraculously being 'cured' by putting into place the same things that have been tried at least three times each over the past six years. I am beyond angry at the system for recommending something that has been tried so many times and been proven ineffective for not only Nikki, but numerous other kids who suffer the same incompetent treatment.

No matter what it takes, no matter what resources inside myself I have to grab into, I will do my best to see that Nikki gets hope, strength and a clear diagnosis and treatment plan for a situation she did not create but that came of her just being born. Having just said that, I now feel like I want to hit bed for the night and it's only 10:42 a.m.

I remember a day many years ago... over eleven years ago... Nikki was dressed up in a cute dress with her little sandals, so it was probably August or early September. She was running to the car, we were going to visit her playmate and run some errands. I remember feeling so happy that Nikki had been so calm and connected that morning. I watched as she skipped across the street and opened my car door and started to crawl inside, as she always did, over my seat and into the back seat... she never went in through the back door, she always had to go over my seat when getting into the car. She'd still do that now if she weren't so tall, I bet. As she crawled towards the back seat I realized that a large, thick webbing was around the areas where she'd just climbed through. Then I saw the spider, up top near the roof of the car, dangling down from his now busted webbing, and he was starting to descend towards Nikki. This spider was the size of a man's thumb.

Realizing I had to get her out of the car as fast as possible, but not wanting to scare her, I just stopped in the middle of our quiet street and said "Nikki... come here, I want to show you something and give you a hug!" and I said this with such love and with zero fear, even though my insides were racing with a fright bigger than a million Halloweens put together. It wasn't as if this spider could kill her, but it could hurt her, and I had to get her away from it. She looked at me at first as if she were going to continue to crawl towards the back seat, but then she saw my opened-hug arms out to her as I knelt down and the love in my eyes and on my face, and she got out of the car, the spider's web clinging and the spider drawing nearer, and she ran to hug me and as the spider's web broke away and set her free, I hugged her so close and started to laugh and got a tremendous sense of relief that she would be ok.

I wish so much I could do that sort of thing right now, and feel that way again with her. That love and hugs could draw her away from impending dangers. That all it would take to get Nikki to safer ground would be to playfully encourage her to just run towards a smiling face and a happy hug.

A few phonecalls have come in throughout the typing of this entry. I am hoping that eventually I speak to somebody who knows a doctor or a place that can help... am considering now canceling all health insurance and just paying for a private hospital, if the HMO/insurance aspect of it all is getting in the way of getting Nikki help. The only trouble with doing that is Kenny's health issues, which definitely need insurance coverage as there's no way we could afford both a private hospital/schooling environment for Nikki as well as Kenny's Crohn's disease treatments (as it is, private hospital care runs about 200-300 per day, and I'm not even sure how I'll find a way to afford that). I need to find out if there's a way to wait for an insurance company to deny payment but keep the insurance for other family members and just pay for the private care separately? I think that might be a possibility if it comes to that. I do know the current treatments for Nikki aren't working and she's just in the same cycle she went in there with. 4 major meltdowns since she went in there and still they won't get her into a longer term treatment center. I get the feeling Nikki isn't far from giving them the kind of meltdown they need to hear/witness to get her the help she's been asking for this entire year. I'd rather they get her into a placement before her mind resorts to that, because I think with less limbo and more direct assistance she could actually pull herself up a little stronger, and if we knew she was going to be getting help we'd feel a bit stronger, too, instead of just this doubt that things are going in the right direction. Things don't seem to be going into any direction at all... just circular. The same things tried over and over again. A small, dizzying circle of same things over and over again.

I hope someday this system changes. I wonder how many families get lost in this shuffle. :(

I've got to fight harder. I've got to fight 10 times as hard. I've got to stop showing my fears and get her away from this spider quickly, safely. I've got to turn things around... they won't, they would rather run around in circles because that is what agencies do best... run around in circles of meetings and procedures and steps.

This has gotten out of her grasp of control. I need to find a place that can give her the reigns to her life back to her, to help show her how to reach out for them, to run towards them and grab them and laugh, hug, be happy to be alive and hopeful. Maybe it's a medication. Maybe it's not eating a particular food. Maybe it's a sleep pattern, a group, a vitamin. I know a place exists that can do that. I just have to find it. If I contact enough people, somebody will know faster than I could find out by researching it. If I try to do the cries for help for Nikki, maybe she won't have to anymore. If the right place is found, they can get things going in the right direction. We need that more than anything right now. Not just Nikki, but our entire family. We're all invested in this, because each of us has done our best and is unwilling to put her, or ourselves, at risk anymore.

The system needs to change.