Day 10 post-IVIG
The battle with the Bear rages on.
New PANDAS symptoms have appeared. I'm pretty sure he's had every possible one at this point. Ones I never thought we'd see. It gets worse before it gets better.
Max is so good at pretending everything is fine. He allowed us to fool ourselves for years. When the family is stressed (which is pretty constant at our house for a lot of reasons) Max responds by trying to be the kid who has no problems. He helps with the little ones and keeps out of the way and pretends he's doing great. This falls apart when he flares, of course. But the flare passes and he's back to pretending and we're back to believing, Until he got diagnosed this past year and I realized he hasn't been fine in 8 years. He just didn't want to worry us.
I look at him now as the war with the Bear enters its final contest. He is tired and hurting. Throughout the whole house, troop morale is low. I keep reminding everyone "It gets worse before it gets better. Really. I swear."
We keep him from crowded places to try to keep him from getting sick. This works out well because he is completely agoraphobic when he flares. But he needs some fresh air and sunshine so we force him outside. He hates us for it. Well, the Bear hates us for it. I keep this in mind. I remind him. I remind our family.
His emotions swing dramatically second by second. He is angry and defiant. Easily triggered into demonic possession style meltdowns. Bored and scared and not eating (if he were well, he would point out he was anhedonic, anxious and anorexic. And he would laugh and be delighted with himself for thinking of it. And I would laugh and be delighted too).
I come home from work and there's a note on the fridge.
"Who wrote this," I ask. It looks like the handwriting of my legally blind son with autism who has worked so hard for so many years with occupational therapy and his vision teachers to improve his control, but continues to have handwriting issues. But I suspect it might not be. Max has small, neat, pristine handwriting normally, but deteriorating handwriting is a symptom of PANDAS. Max has shown it before but never very significantly.
The message in the note does not sound like my Max. It reads, "Why are you always working mom im sad." The words of a sad, scared, lost little boy.
"I wrote it," a voice trails in from the living room. It's Max. It's hard for me to believe he's the one who wrote it.
"Who," I shout back.
My heart sinks. It's by far the worst I've ever seen his writing. The message of the note is heartbreaking too but it's the handwriting that gets me. It reminds me of a patient I saw recently, an older woman. I told her she needed to go to the ER because she might be having a heart attack. She told me she needed to go home first to make arrangements for her husband's care. She told me he had dementia. "He used to be such a strong man," she said, with a distant look. Now, he could do nothing for himself. He barely knew her. She was worn out and so sad. Her husband wasn't dead but he was gone.
Looking at that note, I thought, my Max did not write this. He is falling apart. I have done all I can to fight this Bear. It's up to Max now.
I wish I could crawl inside of him and fight the Bear instead. But I can't.
I tell him it will get better. Over and over. I don't think he believes me.
The next day I am off of work. Max sits at the table drawing while I eat my breakfast. He doesn't know what to draw and is quite distressed. I suggest a few things which he promptly rejects. He is very upset he can't think of anything. Finally I say, draw that guitar, pointing to the one in the living room propped next to the couch. Max loves music. He agrees.
This is what a typical Max drawing might look like.
This is what Max drew.
"Stop goofing around," I say, "draw it for real."
Tears well up in his eyes and he says he's not goofing. It's really the best he can draw.
"Oh Max, " I say, "It's your PANDAS doing this. It's not you." It doesn't make him feel any better.
That afternoon we head out for his required sunshine and fresh air time. He is upset he has to go. He stomps his feet and yells and cries and crumples on the floor. I tell him we are going to Deer Lakes park and there is a playground and a spray park so he needs to get his swim trunks on. He refuses. He only wants to wear his sweat pants. Sweat pants and old white undershirts worn backwards. That's all he'll wear. I give in on this one but secretly pack a pair of trunks in my bag in case he changes his mind once we're there like he often does.
He stayed home the previous weekend while we all went out to a local farm for the afternoon. I let him rest. But now it was time to come back to the land of the living. I decide I will find a way to bring him back.
I tell him to bring some books and paper to draw on. "You can just sit on a blanket and draw," I say. "No different than being at home."
He refuses, saying. "No-o-o-o," a prolonged staccato whine.
"Why not, " I ask, desperation creeping in. And it's not even noon yet. Not a good sign.
"Because if I do," he says with a huff and a glare, "it will mean I am cooperating with this and I am not cooperating." Well, I admire his spunk anyway, I think. Non-cooperation has fueled more than one social movement. (You gotta look for the silver lining or you'll lose it)
I tell him to go downstairs to get his shoes on. He doesn't, of course, Both because he forgets in the few seconds it takes to go downstairs and because he refuses to wear shoes. While he's down there I sneak paper, pens, and his favorite music catalogs into my bag.
I get the baby and his little sister ready and pack up juice boxes and crackers (foods normally verboten at our house). I am determined to get him to enjoy this outing. PANDAS is strong but I have my own guerilla tactics to counter with.
We arrive and set up a blanket under a tree away from the noise of the kids. I show him I've brought his catalogs and paper and juice boxes and he smiles for the first time all day. I leave him there while the little ones and I go to play on the playground and in the sprinklers.
We aren't gone long. The littles are too intimidated by the crowd of older kids and refuse to play. We return to the blanket but Max is not there.
I panic for a second. Imagining the worst. (Ok, I'm not even sure what the worst is in this situation. I just know impending doom has become a go-to emotion at this point). Then I notice a note on the blanket.:
It reads: I am in the car. Too much bugs!
He's sitting in the car. His phobia of bugs too much. There are really hardly an bugs at all. He tells me later an ant crawled on the quilt and he had to leave. Maybe an ant did or maybe he imagined it. Either way, he is sitting in the car. No sunshine, no breeze, no blanket in the grass on a beautiful summer day. He will not be changing his mind and coming to play in the sprinklers. He won't even be taking a lazy summer afternoon nap on the comfy old quilt. He is in the car. Doing nothing.
PANDAS has won this particular skirmish despite my best efforts. Another day of his childhood taken.
So many pictures he is missing from
So many happy times. So much life. So many memories. Missing Max.
This Bear is unrelenting. Putting his all into this last battle. Not giving up easily.
Max has had some ok days since the IVIG but mainly very bad ones. I remind myself of the prayer of St. Francis. His immune system is being reborn. The old must die first. It is not okay, but it is what it is. We must keep the faith.
Max will never get back the years the Bear has taken from him. It will be a part of his history. But this bloody chapter is the war for independence. He soldiers on through trenches and jungles and deserts. The Bear has his tactics but we have ours. Booyah, you damn Bear. We leave no man behind.
Lord, make me an instrument of your peace.
Where there is hatred, let me bring love.
Where there is offense, let me bring pardon.
Where there is discord, let me bring union.
Where there is error, let me bring truth.
Where there is doubt, let me bring faith.
Where there is despair, let me bring hope.
Where there is darkness, let me bring your light.
Where there is sadness, let me bring joy.
O Master, let me not seek as much
to be consoled as to console,
to be understood as to understand,
to be loved as to love,
for it is in giving that one receives,
it is in self-forgetting that one finds,
it is in pardoning that one is pardoned,
it is in dying that we are born again.