So, took a little break the last week because I'm absolutely struggling...a lot.  It was September 5th last year when Nixi had the psychotic break that she's never returned from.  I was actually looking for that date a few days before last week's blog so I could write about it.  When I opened the log I started from that day forward leading up to our first UC Davis visit in November of 2013, I started reading it and it floored me.

When you are a special needs parent, regardless of the special need, you are a firefighter.  You are so used to putting out fires on a daily basis, and so relieved when they're done smoldering, that you just trudge ahead and sort of block out the details of those fires.  You have to or you'd never be able to cope with the next fire, because its coming...its always coming.

I can see that Nixi's illness is progressing, her meds not working as we all had hoped they would, I can see the big picture.  What I forget is how we got here.  I am so relieved the moment there is a shred of stability that I block out everything leading up to that point, or at least the specific details.  I read that log and was shocked, I mean really shocked.  As I was reading I kept having these visual memories of the events a mere year ago.  October 2012 was when Nixi's illness hit a fevered pitch.  I remember her walking down the sidewalk trick or treating on Halloween, holding Emily's hand and telling her that she was actively seeing a disembodied hand.  There was an entry for every day from September 5th until the night before the first Davis trip........and there has been an entry everyday thereafter.  In fact, it has just been in the past month or so that I have started not keeping daily records simply because now its more notable when Nixi is not absolutely out of her mind.  So, I now keep a log of "stable enough" days.  That log is short.

So, right now Nix is flip flopping....one week "stable enough", the next week unhinged, then "stable enough".  Last week, not so great...worse, yet, she initially appeared "stable enough" because she's getting so good at hiding her symptoms.  This week, she's "stable enough".

One of the hard parts of this illness is that it makes her feel exceptionally special...grandiosity...a feature of the psychotic disorders.  She has people in her head that tell her what's going to happen in the future, that she's an angel, what others are thinking, etc.  Yes, these same "people", auditory hallucinations, are also exceptionally cruel and scary...but they give her knowledge that no other living being has.  A side effect of that is a deep sense of entitlement.  When Nixi is relatively stable, and her meds are working really well (like one month out of all of this), she is absolutely the sweetest, most empathic and intuitive child you have ever met.  The less stable and the worse her symptoms are, the more demanding, hostile, mean, obstinate, and downright cruel she can be.  She treats me like I am a fool, an utter imbecile.  She is exceptionally bright so she is able to come up with really cruel venom to spew when she isn't given her way.  Now, she NEVER blames any misbehavior on her illness, remember, she's hiding it and at her worst doesn't believe that she is ill at all.  Its draining to have a 4 and a half yr old that you love so dearly and that you know loves you back bark orders at all day, speak in a nasty and disrespectful tone, etc.  I don't accept this part of her illness.  Its not okay to treat others poorly and she is given consequences for each and every dagger that flies out of her mouth.  And I feel ok with that, because I will never allow a symptom to be shaped into a behavior.  The sad part of it it, the consequences are largely ineffective because only about 10% of this is a jerky little kid, the rest is a schizophrenic person who is not stable and no behavior modification is going to change that.  So, I continue with the consequences and behavior plan most surely to make myself feel less powerless in this situation.  But if that helps, I'll take it.  No other choice.

Safi has been a little up an down with school but things are leveling out.  She had a great field trip to the farm with her dad last week, lots of fun, and her Sophia were two peas in a happy pod again.  She is, on a whole, really doing well and its hard because I don't want her to get lost in the enormity of her sister's illness and personality.  We need to ramp up the social skills work because she wants to be a mom when she grows up.  If she's going to reach that goal we've got a hell of a long way to go but its doable.  She would be a wonderfully caring and creative mother.  I may just be a grandma one of these days, yet!  She certainly has a slew of little admirers vying for her attention at school.  Its really cute, and she has no clue its even going on...most of the time she's not even aware that she's involved in the interaction.  We will work on this.  We will nail it.  She is amazing.

The girls had their first overnight stay at dad's and it went wonderfully.  Nix was very nervous about it, Safi was extremely excited.  At the end of the day, or night, they were both delighted with the stay and looking forward to their next one next weekend.  Fallout Saturday night and Sunday was pretty severe, but that's what its going to be for a while and that's ok.  We still had dinner with Emily and the kids Saturday night then hit the pumpkin patch with them today.

We powered through and we will be starting the week in an okay place.  All I can ask for and sometimes that's even too much, but not this week...this week we are going to be okay.  Who knows, fabulous could even be lurking just around the corner!

Sarah

Nixi last week after school...Tues

Thurs...


And, to get you in the Halloween mood, Safi reads books Nixi made in school for our bedtime stories..