Day 15 post-IVIG #2
It was apparently PANDAS Awareness Day today. I was thinking PANDAS Awareness today was tomorrow until it hit me ten minutes ago. It has been that kind of day. Why? Because PANDAS.
We have been in the trenches, matching the Bear's attacks with equal counterforce. He enlisted comrades and we expanded our arsenal. He divided our forces but we called in allies. We are gaining ground but not without casualties.
Max is two weeks out from his second IVIG. In some respects he continues to improve, but in others he is worse than I have seen him since onset. He has gone back to a dark place I never thought we would see again. The Bear is furious with us. There is no civility to this fighting. No neat rows of marching soldiers or shiny medals on starched uniforms. No gloves thrust on the ground or rules of war. The Geneva Convention does not apply.
He is looking within us to find our weakness and going after it. He is enraged we are taking our child back. His claws are out and slashing at our underbelly. His growls echo through our house.
Max's sister is receiving treatment for her immune deficiency and PANDAS now. We hold out hope for her since she was diagnosed so early on. Perhaps the Bear will let her go, we think. Perhaps we have gotten to her soon enough he will relinquish her to us and devote all his forces to the older boys he's held for so many years. Maybe he thought he would just sneak in quietly and snatch her. And when we caught him, he ran. Maybe.
Maybe. But it seems to have made him very angry and he has dug in ever deeper in his attempts to hold onto Max at any cost.
The things he whispers in Max's ear are meant to tear our family apart. Divide and conquer. He's a smart one, this Bear. Machiavellan. He pulls Max into a rage and tells him to say things that he knows will unravel us.
But we are smarter than this unholy Bear. We see him for what he is. If only our children could.
The Bear has Max entirely convinced my husband is his enemy. My husband who willingly chose to become Max's parent while he was in the throes of his initial onset at age 4. My husband who has cleaned up blood and puke and tears all the other bodily essences. Who has been hit and kicked and bit and spit upon. Who has waited in psychiatrist waiting rooms for two hours with two little PANDAS completely out of control. Who has been nurse and therapist and pharmacist and personal chef. No amount of reasoning can convince Max otherwise.
Facts mean nothing in the face of the Bear's unrelenting propaganda campaign. History books are rewritten before the battles have even ended.
Max does not recall attacking him, biting him, smashing the fan, furiously slashing a Kelly green marker over the inside of his bedroom door, throwing clothes out the window, wailing a golf club though the attic and threatening him with it. If you mention these things to him, he becomes furious and reports that it is all quite the opposite. He is not the one who did these things. It is, of course, absurd to say my husband did them, but he's right on one thing: he did not do these things. The Bear did.
The Bear owes us a new fan. A box of lightbulbs. A bedroom door. Some band-aids. Once we have our Max back maybe we'll sue for damages.
Max runs now too. Runs, elopes, bolts. Use whatever term you like. It's scary as hell. A bad dream we can't wake up from.
Me, he clings to, begs not to leave him, begs to save him. Me, he cries in my lap of a sadness so wide and so deep it is tearing him apart and taking everything from him he once enjoyed. My husband, he blames, rages at, insults and bites. What kind of disease is this? Where has the Bear learned to be this devious?
Our house is covered in 2 year-old-height scribbles on our walls courtesy of our toddler Auggie. We make no efforts to clean them form the wall. Partly because we know there's no point (he's kiddo #5. We know the destruction does not end at 2) and partly because he's our last and we know these things are precious. But now, we have 11 year-old-height markings on our walls. And I make no effort to clean them because I know they may not end as soon as I'd like.
They are not precious but they will someday serve as a reminder of how things were. Someday we will have our boy back and we will sit and tell war stories. We will be soft and complacent and the war will be a distant memory. Like another life. Like a bad dream we have long since woken up from.
Perhaps it is a win for the Bear that I was unaware it was PANDAS Awareness Day today. But, the PANDAS parent army was launching a campaign of its own today. Not of propaganda but quite the opposite. A campaign of truth. Exposing the Bear for what he is and calling out the Sympathizers who are supposed to be helping our children but don't. Go ahead and laugh, Bear. You won't be laughing long.