It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that. I’m off work from noon today until next week. I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there. They’ll have a pizza and cake party for him tonight — and he even gets a present or two.
We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.
Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra. Then back home for two more acoustic shows before (sob) the tour is over. There is a reason my son learned to sing one of their most complicated songs. If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times). I guess I brainwashed the child; he was certainly unresistant. And so together we live happily ever after in Gusterland.
I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments. It was their idea; they said they’d play it in the van for him. I’m so grateful for the kindness of those who have my son in their care. There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.
PAUSE
At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday. I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.
I don’t know if I believe this.
I’m going to ask a good doc I know, though, and look into it some. I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.
What is it, bunny? What can I do to make this world softer, better, more tolerable for you?
Sometimes I get mad. It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away. Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit! Because you can’t tell me that you’re not in there somewhere!”
It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could. Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot. It ain’t fair. He’s so brave.
Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.
Baby Jonah, 2002
Happy Birthday, Sweetheart…
The Never Normal 