I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts


the life of a bird

who does not love so much

that it hurts






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I wish I was fine

It’s like my brain

is doing a freakin’ crime....


From a rap by a child, age 11


Kids & Consequences


Yesterday, my 12 year old told me that I was annoying her. So, I made sure that she wasn't a liar in addition to being a brat. I'm sure I annoyed her greatly by relieving her of her phone for the day. 

Weird, I thought. Earlier, the same day, she pulled the same crap on her dad, and lost another privilege for a period of time. She wouldn't even back down when warned.

As I thought about it, my mind circled back to the night before when her sibling cursed and said hateful things in the midst of a PANDAS or Bartonella rage. That drama was much more traumatic for everyone. Yet that child was not punished.

Perhaps my youngest was checking her own boundaries with us. She actually didn't seem that upset when I removed her phone. In fact, several years ago, she said to me, "Mommy, so-and-so's parents never punish them. I don't think they love them enough." Even at that age, she knew she needed parent-defined limits. 

When my son first became ill--even before the PANDAS struck, we could not understand why consequences didn't deter him. We took toys away, canceled a day trip--nothing we did helped. Fortunately, we didn't (and don't) believe in spanking. We also tried reward charts, stars, prizes. Nothing worked. Within a moment, he would spiral into an unreachable world. A place where consequences and rewards meant zilch. Later, sometimes, remorse would follow. At that point, punishments seemed harsh, especially as his mood became more depressed and confused.

But how do you handle a child whose brain is malfunctioning? As behavior ranging from rude to atrocious manifests, their siblings gape, wondering how far this child can go without being given some kind of punishment. 

There have been times that our oldest child took everything out of his closet and drawers, in effect destroying his room, and then was incapable of cleaning up after himself. Putting everything away would have been a natural consequence but that became MY own unjust punishment. Because he was in no shape to even help beyond picking up a shirt or two.

Then again, I tell myself, he is better than some kids suffering from PANDAS and/or Lyme. He is a gentle person. He hasn't attacked his sister or his parents. He hasn't broken TVs or computers, as some children and young adults have done. He empties folded laundry baskets and turns over chairs--gently. 

All this shows that he can retain some control when in a rage, though! If he has that much control, why bother trying to destroy something? He doesn't understand it himself, when contemplated in a more lucid state.

We also wonder how much is manipulative. While there are certainly times when his brain is out-of-control, he can rein it back in a jiffy if a friend comes over. When asked to carry laundry baskets or wash some dishes, he suddenly has joint pain. Could it be that he's learned how to play his own game? We mustn't push him, mustn't stress him or we will cause an exacerbation of his PANDAS symptoms. How much of this is real and how much of this is manufactured for his own short-term benefit? We need a bullsh*t meter.

Then again, perhaps we are simply burned out after a long-term flare. When he was in a better place, he was much more helpful and could begin to handle more stress (i.e. chores.) Despite the difficulty in treating Lyme lately, he is earning and maintaining high grades. Do we look at this in a positive light--he's able to keep it together at school now? Or is this one more teenage trick?

Parents of children and teens with PANDAS agonize over these issues daily; there is even a Facebook closed support group for parents of kids who act out at home yet not at school. It's when our children are even more ill that the symptoms spill out at school. 

The rest of the world has no idea what we parents endure daily, hourly. Years of drama, tears, threats of hurting oneself and cries of not wanting to live become a grating part of our lives. Yet none of this will ever feel normal.

Normal is a young tween testing her limits. Normal is a tween texting me to see if she and friends can drive with a 17 year old I've never met, trusting that I will say no because she doesn't want to say no herself. Normal is taking away someone's phone for a day and having that child actually calm down!

I'm waiting for Normal. I wonder how long I'll be sitting here.

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