Day 4. Year 4.

PANDAS, PANDAS, GO AWAY. Please don't come back, we don't want you to stay.

If you don't mind, I'm just going to wallow in a bit of sadness tonight. Today was not the easiest of days. And I am speaking from my perspective only. I can't even image how these kinds of days make Vicki feel. :(
Argggg. I just get so frustrated. Autism. Seizures. PANDAS. Please will these 3 amigos just give Vicki a break? All I want is for Vicki to ride off into the sunset happy and content. But she can't do that some days... and she hasn't been on a horse for 2 years. That makes me sad too, because she loved therapeutic horseback riding so much.  Sorry, I'm very distracted tonight.

I don't even know anymore (and I guess never really did know) what causes what and why. There are so many neurological things going on right now with Vicki that I liken it to pulling out a bunch of tangled necklace from a drawer. They are just all clumped together. And no matter how much you try to untangle them, sometimes it's next to impossible. Some days it gets so frustrating, and there is no end in sight so you just leave it all bunched up together and tell yourself you will try again tomorrow when you are not so frustrated and exhausted. You have to. You get up the next day and work at it again. And then you get those necklaces apart and you feel such accomplishment, such satisfaction. You say to yourself that you will do everything in your power to keep them from getting tangled up again. But they do. And then you are right back where you started at the last time.

All of these neurological amigos are wreaking havoc on Vicki's necklaces right now. It's so hard to tell where one begins and the other ends. A behavior is a behavior is a behavior. I've never been good at analyzing behavior or implementing behavior plans. And I certainly can't tell the function of some of Vicki's behaviors anymore.

One thing I do know though... what I see just breaks my heart. She cries. I cry with her. She holds on so tight to me... she looks deep into my eyes like she is trying to show me what's going on so I can help her separate the necklaces. I don't really want to talk about super specific instances tonight... and it may not even be one big thing that sticks out, but it's little by little by little and I feel like she is getting all tangled up again and I can't do a damn thing to help her sort it out. I hate feeling so helpless. She's in there. She's not. She's happy and carefree and giggling one minute on the swing as she throws her head back and the wind whips her curly hair around her laughing face. The next minute she is sobbing, crying so hard, squeezing my hand so hard and pulling me close to her. Then she wants dinner but she can't make herself eat. Something is stopping her. And then it's 45 minutes later and she hasn't been able to take a bite yet. And then she can't stop talking about a certain movie or the old scar on her hand. Over and over again. Over and over. If I had to guess, maybe 10 to 15 requests per minute, going on for a half an hour, then an hour... And then she's crying. And then she's laughing, and then she's staring off into space and I feel like she may be having absence seizures again.

Damn these 3 amigos--- autism, seizures and pandas--- you are no friends of mine or Vicki's. You are not welcome here. Sigh.

Thanks for listening tonight. xoxo