Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here). Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.
In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally. When we got him home and the anesthesia wore off completely, I took a picture of him in his misery. I guess I wanted to record it while desperate to alleviate it.
I hate this picture.
This was the only time in his little life that he verbally expressed pain to us: eye hurt, he cried – just once – as if agony could forcibly pull language out of him.
We gave him medicine and I rocked him in my arms, wishing I could fix everything. Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain. They told us neither his eye nor his arthritis would cause his aggressions. Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.
The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions. It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly. On the ride home we had to pull over three or four times because Jonah went bezerk. Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell. There was virtually no conversation there or back. We were collectively frazzled – got back into town around 3.
After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,
and I lay across the bed, trying to make myself think of nothing.
“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”
~ Audioslave again, “Doesn’t Remind Me”
I can’t write anything else right now.
I’ll come back.
The Never Normal 