Great phonecalls today; found out the mental health arena has been circus-like for years, decades even. Insurance issues are only half the problem... It seems a boat-load of money is spent on funding specialty groups for home visits and over-paid titles for offices full of college graduates with good intentions but not much of a clue of how desperately needed more pro-active head/hands-on doctor-to-patient discussion and diagnosis is needed. And, on a bright note, it appears the wheels are already in motion to overhaul the mental health system and fix the many, many flaws within it. So although our family gets caught in this crossfire of system discourse and change, our family's struggle with trying to help a family member with a mental illness is nothing new and adds to the pile of reasons the changes in the system are needed. I guess in some small way that is comforting. Greatest of all were the phonecalls from Nikki.

Just finished up a meeting, Kenny and I were here for most of it together, and then KC and Winter came home and it was great to have them be seen in such happy, calm, unafraid moods. They showed their Halloween costumes and talked excitedly about our plans for decorations. I'd almost forgotten, in the midst of all the phonecalls and meetings, how fun the spooky season is for our family. The past few weeks almost ripped my usual playful mood from my head and heart, I have felt so serious and focused on all the issues and the headaches of trying to be an advocate, an insurance analyst, and at times even a lawyer during the course of what should not have been my fight to fight... I should have been just being Nikki's mom, but was forced into other areas that were far beyond my knowledge and expertise. Reading was the best way to arm myself, with knowledge, but the more I read the more angry and disheartened I became. Families are going through ten times more than we are with children's mental health issues, and my entire soul aches for them (and our family, too.) It was so great, yesterday, to hear somebody say "let me do that for you... your family has been through enough."

I've been reading Deborah Spungen's "And I Don't Want To Live This Life", and there are some frightening parallels to Nikki's condition. The hallucinations, the colick as a child, the paranoia, the 'look', the blind rages, and the inability to connect to the life around her/reality... It is such a frightening situation for all of us, but most of all for her, without doubt. It appears the Spungen family is one of those 'ten times worse' than our family's scenario, as it appears that Nancy had longer lasting, more frequent episodes along with the trouble of drug addiction and sexual issues, that I'm sure only make matters much harder to deal with and help resolve. Still, the things that are the same are strikingly so... the test scores most profoundly. High/superior in all areas except math. That really seems to be key to this type of mental disorder.

Nikki's father called today and we talked at length about the condition, which both he and his brother have, and he gave me tips on what might have worked for him growing up... He also is going to do his best to play a bigger role in Nikki's life, so that she may learn from his mistakes and ways to deal with the frustrations of being born so disconnected from oneself and those around you. He is very strong, I told him, so I have a lot of faith and hope in this whole thing working out ok in the end. I promised him that in years to come we would both one day see Nikki as an adult at a large family Thanksgiving meal, with all families present, with grandkids and spouses and laughter and memories, and we would look back on all this hard, hard work, both physical and emotional, and it would all be so very worth it. He agreed.

So for now we continue to forge ahead. The big meeting is tomorrow, which will be interesting and very well could be a defining moment in the course of Nikki's treatment. I feel confident that things will work out in her favor, but at the same time am prepared should they not. We've looked into other areas to bring her, mainly Boston, which has some of the best in the field of mental health. If need be I'd move up there for a few months with her; we are hoping it does not come to this. We are hoping the insurance and agency disputes will resolve amongst themselves and do what is best for Nikki without forcing our family to try to care for a mental condition we have no idea how to treat. It does not sound like it will come to that, but if it does... we are ready to do it. Anything to see Nikki through this, to get her in control of her thoughts and moods and entire being.