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"Hey, I'm not dead. But gee, my life sucks" (lamentation from the other side of the rainbow)

October 28, 2017

 

 

 

Day 33 post-IVIG #2

 

The difference between a kid who just doesn't want to go to school and a kid with PANDAS is the number of tears the kid with PANDAS sheds when he finds out he won't be going anymore. It is not my son that doesn't want to go, It is the Bear within him. The lies He tells, The hold He has. His arms are just too strong right now. We're fighting. I swear to God we're fighting. But he's not letting go.

 

How I hate those matted arms. The worn pads of His paws, covered in the blood of the children He's taken before ours. That grip He holds. How can it be I'm not strong enough to break my baby free by sheer force of will? I'm not. It is. What. it is.

 

No time for self defeat. New strategy. Regroup the troops.

 

Max begged me not to go to school last Friday. Well, actually, Max has been begging me not to go to school almost every day for the past month and a half. We were getting by with an agreement he could take one day off per week but had to attend the other four. He was doing well in school while he was there. He even got elected to student council and nominated for honor's band. His grades were up and his teachers reported all was hunky dory.

 

But.... PANDAS

 

He was coming home and falling apart. And as the weeks went by, it got to the point he couldn't do homework once he got home without major meltdowns. Or at all. And then the anxiety began

 

they're going to yell at me for not finishing my homework. They're going to be so mad.

 

No Max, I talked to them, they're not mad. You're sick. You're not getting in trouble.

 

No, they're going to yell at me.

 

Max, have they ever yelled at you? Ever?

 

Well, no.

 

So they definitely wont yell at you this time. It's all worked out

 

No, but they're going to yell at me ....

 

 

How can he believe me that he is safe with the Bear whispering in his ear? I'm just a small voice far away, carried by the wind as the Bear's lies blast in from the proximity of his amygdala.

 

He has been home a week now. Sleeping. Having no demands placed on him so as to avoid meltdowns. Getting his vitamin infusions. Taking his supplements, Challenging his thoughts. Sort of.

 

He has olfactory hallucinations now. He thinks he smells stink bugs. Everywhere. The stink bugs are out to get him.

 

I did bloodwork to try to see why he turned south a couple weeks after school started and did not improve with the second IVIG. I found he has gotten himself EBV since last I checked in April. Mono. Lovely. I swore for a solid five minutes when the results came in. I'm not exagerating. Mono has never been cursed out with such ferocity in its entire existence. 

 

The mono convinced his skeptical father it was time for cyberschool. His adament objections we not make our child live in a bubble fell. Defeated.

 

We are taking our child out of Israel into Egypt. We await word it is safe to return. All around me the cries of the children who are not spared. The massacre of the innocents. Rachel weeping for her children, and refusing consolation, because they are no more.

 

I know pulling him is the right thing. I know he must be kept from the strep and flu and myco churning through the air of the school. I know he needs to not spend all day holding in his OCD and tics and rage. I know he needs time to think and sleep and heal. But it feels like defeat. One more thing this wretched Bear has taken from him,

 

Max is relieved not to have to go anymore. I assumed this much after listening to him beg me not to make him go for forty days and nights, What I did not fully expect was how sad it would make him. He is not happy to no longer be going, He is relieved. And he is sad to miss his friends and to not serve on student council and to not play in honor's band. And he is embarrassed and scared. A scared little rowboat tossing in a stormy ocean with no light house in sight.  I'm shining, I swear. I'm shining so hard but he just can't see it. How can he with the Bear covering his eyes?

 

We were sitting at the dining room table together. I was working on labs. He was writing his symphony. And he started to tell me how sad he is to miss serving on student council and he began to cry. And I told him I'd be sad too and it wasn't fair. He told me he'd made notes for his class to read and I asked to see them. They were dated: November 24th (his birthday), January 14, February 28th (or 29th if it's Leap Year), and The Last Day of School.  They. Broke, My, Heart.

 

You see:

 

 

 

 

 

 

 

 

 

 

This is how Max views his life. Needles and IVIG and pills. Sucking. Afraid his friends will forget him. Alone.  And who can blame him?

 

Away in Egypt, not knowing when or if he will ever return.

 

I made the decision to pull Max from school the night we had our screening of "My Kid Is Not Crazy." I sat in the darkened theatre with 200 other PANDAS parents and doctors and friends and family and watched the hardest movie in the world there is to watch, but also the one you absolutely cannot look away from. It got to the part where the four year old little boy with recent onset is melting down, so overwhelmed by such anger and fear and rage. And I saw my little  boys up there. My Max. 3 1/2 years old, Losing his mind. And his body. Ravaged. And I knew the time for grit-centered pep talks was over. Max deserves a damn break. He has been fighting like hell for eight years on the front lines. He has no morale left. It is time for reinforcements.

 

We got the keys to our new clinic this past week the same time all of this was going on. It is a short walk from our house. The perfect location. I used to tell Max, when he complained about my long doctor hours, someday I'll have an office near our house and and you can stop by on your walk home from school and say hi. A million years ago when he was on the remitting side of this relapsing remitting circle of hell.

 

As my husband Eric walked out from his first day painting the walls their new Spectrum colors, he saw a rainbow and texted me a picture. I was on my way to the store, thinking of getting Max from his piano lesson so he wouldn't have to walk home in the rain, and I saw it too. I thought of the Hebrew Bible story of Noah. I'd listened to it in my car a few days earlier driving to work. God seals a covenent with Man, promising never to destroy him again, with a rainbow.  

 

I saw the rainbow and did something I hadn't done in a while. I cried. Really cried. Didn't fight it back. Just collapsed into it. And I lamented. Why do all these babies suffer? They don't deserve this. They don't deserve this. You promised not to wipe us all out with a flood, but is this any better? A plague on the children. There is no escape to Egypt, not really. It can happen to any of our children. They can be taken in the night.

 

I know we will get our Max back, most of him anyway. He is a sleeping beauty for now. We will find a way to wake him, to bring him back to life. Years have been lost but he will wake up. This Bear will not steal him away forever. This is not an unstoppable flood sent by the Almighty. This is biological warfare by the Bear. A pathetic little black and white bear that picks on children.

 

Eric says the rainbow is a sign that our clinic will be blessed. I hope he is right. It will allow Max to spend more time with me while he cyberschools and that is a blessing.  It will allow me to see more kids with PANDAS and inflict more wounds on the Bear, and that is a blessing. Beyond that, who can say what the future holds. PANDAS parents learn early on that uncertainty is the only thing we are assured in this life.

 

I hope that Max will be able to see this as a time of R&R. A long overdue trip to Tokyo. I will keep fighting the damned Bear on all fronts. So many fronts. Count our victories where we can and keep on. I hope in time he will see there is something beyond this. Shortly after his first IVIG, he taught himself "Somewhere Over the Rainbow" on his ukulele as a treat for me (since I walked down the aisle to "Somewhere Over the Rainbow" on the ukulele). I hope he comes to believe again that there really is somewhere better so closeby.  I hope he knows that although he cannot see it, cannot touch it, it is there waiting. And I am there too, with my arms open. Those are not flood waters, baby. They're just tears. And the sun will dry them up. One day.

 

 

 

 

 

 

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