Day #64 post-IVIG #3
As we drove in the car, Max was giving me one of his ongoing monologues on Tchaikovsky when I commented on his love of classical music. He ghasped.
"Not classical," he said, giggling.
I looked confused (and slightly annoyed that my 12 year old found my ignorance laughable)
"Tchaikovsky is a Romantic composer. I only like composers from the Romantic period. Tchaikovsky, Verdi..."
I asked him what the difference was and he explained to me Classical music was characterized by complex piano pieces with focus on the technical aspects while Romantic music had more feeling. For simpletons like me, it could be idenitified by songs that build as they go along to a very loud conclusion. There also weren't many percussion instruments in the classical period, he pointed out. The Romantics had lots of percussion. I knew this because Max blasts Tchaikovsky and Verdi in my office each day after the patients have gone. I knew this because the fact the "1812 Overture" uses an actual canon as a percussion instrument is Max's current greatest single source of joy. Euphoria may be a more accurate descriptor.
Canons. Fire. War. A rare chance for Max and Mies's obsessions to intersect. Mies has been obsessed with war for years. His ability to create canon and bomb sounds with his mouth is truly impressive (and intrusive).
Max furthered my education by pulling Dvorak's "The New World" up on my phone so we could listen to it as we drove to the library. Right around 3 minutes 50 seconds in, it goes into a melody. A quiet, gentle melody that filled me with a feeling I hadn't felt in so long. That something that trauma takes away. Hope, the sense of possibility, the ability to exhale if only for a moment and allow yourself to believe that things really might be all right.
We went into the library and I got a few books for Max's homeschooling and an Iwo Jima documentary for Mies. Max's energy and focus are improving and I'm moving from unschooling to homeschooling. There was a new release on display that had two polar bear cubs on the cover. "Bears of the Ice: Quest of the Cubs" The cubs were cute and I found myself oddly drawn to the book but I knew I didn't have time to read it so I stuck with looking for "Watership Down" and "Diary of Anne Frank" for Max.
He's been improving day by day. His tics are less. No meltdowns in a while. Pupils normal dilation. He laughs. If we ask him to do something he doesn't immediately forget. And doesn't argue. He does it with a smile on his face. I was talking yesterday and he started to interrupt me and then stopped and said "Oh sorry!" and waited.
That is a miracle.
He wants to see his friends again. His list of foods he is willing to eat is opening up. He is willing to drink water with prompting. His brain is less foggy. His skin is not so sickly. His emotions are more even. He goes to sleep alone in a dark room.
He's not 100%. He's not 90%. But I am almost to the point where I might allow myself to hope he can reach 90% eventually.
He and his brother wrestled yesterday. I assumed they were fighting and started to break it up before realizing they were laughing. Just wrestling and having fun. Like kids. Like brothers.
His older brother has been improving too. He has PDD-NOS along with his PANS. We have seen in him a lessening of obsessing, dramatic decrease in meltdown frequency, less irritability and aggression with us and at social skills group, more mental clarity, more mature behavior. He's still very far from a neurotypical 13 year old but he's happier. The whole family is happier. He actually wants to learn to be more independent now. Another miracle.
Mies and Max are 17 months apart. I got pregnant with Max when Mies was 8 months old. I'd decided I was going to be a doctor by then and I remember thinking how good it would be for Mies and his new little brother or sister to be close in age so they could have each other while I was working long hours at med school and residency. Mies had been diagnosed with several medical issues at that point but was still hitting his developmental milestones ahead of time. His doctors told me he was going to have significant delays but I wasn't so sure. It was a Dvorak sort of time right at that moment. Logical or not.
They were close. But Mies's autism related issues came between them. Then his PANS. And then Max's PANDAS began. This was our normal. This was our little family. Screaming. Hyperactivity. Hypersexuality. Violence. Delusions. Anorexia. Insomnia. GI issues. Infections. Neurologic degeneration. Psychiatric diagnostic accumulation. All too typical of this generation. Doctor appointments, therapy appointments, IEP meetings. (Boy scouts? Teeball? What's that?)
Canons. Fire. War. A bombastic cacophony.
Some days were louder than others, but there was never peace. Only war. Endless war.
What becomes of children raised in a warzone?
Some will tell you there is permanent damage. Kids need to be kids, after all. When they have years of their childhood stolen, there becomes a point of no return. But this kind of thinking only tells part of the story.
My family will never be typical. I cannot give Max back the nine years of a typical childhood he lost. Cannot give Mies the typical life he has never had and never will. And I will do anything I can to keep other families from losing this much. But this isn't a point of no return. It's a turning point. A point of entry for something new. A shifting point of view on--- well, you get the point.
My children have suffered, have missed out on a time in their life they can never get back. My family has suffered. But there is so much life left to live ahead still. There is a New World that might be. Not a typical world, but a good one.
I did not conceive of there being a different possibility for us until recently. A New World. Where the love we have always felt for one another might have a chance to grow, unencumbered by the Bear. Where we leave the War with the Bear behind and find out what it means to live in a time of peace. Where my boys wrestle like little cubs and forget why it was we all used to be so afraid of Bears. Maybe it will come to be and maybe it won't, but at least for now there is a sense of possibility. And that, my friends, is a miracle too.