The God’s honest truth about Monkey’s bizarre probably-a-seizure is that it was really scary and knocked us for a loop, but it’s not the scariest part. If he had just had THAT, just that one incident which is already fading in our memories (“Do you remember exactly what he said?” Otto and I will ask each other, replaying the scene over and over again, grasping to remember exactly how it happened), which has not been repeated, we would be feeling better now because it hasn’t happened again. And also because everyone is content to point at the Incident Where He Clearly Wasn’t Himself and say “That was not Monkey. That was something weird going on.”
But the scary part is everything ELSE; the meltdowns, the paranoia, the grand declarations of the things he will need to do “to protect himself,” the weaving of stories about others which are so completely bizarre and implausible but feel like truth to him. That’s what scares the crap out of me, daily. Because what if that’s truly him? What if it’s not “something weird,” but instead the person he’s becoming, the person who is no longer merely “quirky” but has a big scarlet A for Autism on his forehead? I thought that when every day was hard it didn’t hurt so much, but we’re back to every damn day being so, so hard and yeah, the pain feels never-ending. I don’t look not to hurt, anymore. I just try not to hurt so much I can’t function.
After all, if he can get up and keep going every day, so can I.
So the God’s honest truth is that when the neurologist’s office finally called back to discuss his test results, there was a part of me that WANTED them to say they’d found a tumor. Because that would mean it’s Not Him. That would mean maybe everything had an explanation that isn’t “He’s autistic, dumbass.” And the guilt and the sleepless nights over half-wishing that for my child… well, I’m sure you can imagine. What kind of mother wants that? Me, apparently.
Still. They called and said the EEG was clear, but the MRI presented “an area of concern.” Let’s schedule a CAT scan to take a closer look. And as the world began to spin just a little bit sideways, the nurse rushed to tell me not to worry. HAHAHAHAA. She went on to say that from the doctor’s notes it looked like the concern isn’t the brain itself, but his sinuses. “What does that mean?” I asked. She said she wasn’t sure, let’s get the CAT scan out of the way and then the doctor would be in touch. Fine. The CAT scan is today and Monkey is seriously jazzed about the prospect of being injected with radiation. (I hear “with contrast,” but Monkey hears, “I might glow in the dark afterward.”)
Can there be a tumor in his sinuses? I have no idea. Could that produce seizures and/or weird behavior? Ditto on the not knowing. I don’t know what we’re looking for; I don’t have a whole lot of hope anymore about this giving us any answers.
In the meantime: Medication adjustment. New medication. New strategies at school. And still, meltdowns. Paranoia. Violence. And as of yesterday, his therapist of over three years telling me very gently that his needs are now beyond her capabilities, and she will help us find someone else, but it’s time for us to move on if he is to get the help he requires. I knew it before she said it, but it still felt like a blow to the gut. She said “I’m sorry” over and over, and I knew she was not apologizing for referring us out, but for what he’s going through; what we’re all going through right now. I wiped away tears and told her, “I don’t know what to do. I don’t know where he is. It’s like he’s gone.” And she said she was sorry.
Monkey only spent half the day at school, yesterday. The details of his spectacular implosion that led to the shortened day are unimportant, but by dinnertime I was pretty much hanging on by my fingernails. Everything out of my mouth ended in near-hysterical laughter, as the absurdity of trying to “act normal” pressed down upon me in that laugh-or-you’ll-cry way.
Otto made some comment about some stress or other he was needing to handle, and with a grandiose sweep of my arms I announced to my family that no one needed to be worried or upset about anything, right now, because I WAS HANDLING EVERYTHING; anything which merited any unpleasant feeling I WAS RIGHT ON TOP OF, relieving other family members from the need to feel anything other than fabulous. Otto half-grinned at me from across the table, unsure if it was okay to find this amusing, and to my right, Chickadee’s face took on a look that was an equal mix of bemusement and concern.
To my left, Monkey’s face softened and he placed a gentle hand on my arm. “Mama,” he said in a small voice, “I think that you handled today really well.” As he patted my arm I laughed, brayed until I wept, because he was the old Monkey, the one who loves fiercely and feels deeply and wants only to make it all better.
So he’s still in there. I’m not sure which one of us is going to lead the other out of the forest, just yet, but it does make the wandering a bit more bearable.