On Tuesday morning, I set out with something like hope to meet Jonah and the two caregivers who’d driven him up for his glaucoma doctor appointment. Jonah hadn’t seen one of the caregivers, J, in a long time. J and Jonah have a special bond, and I’m sure Jonah was thrilled when he first saw him. I love watching them together: a big brother and his little pal.
Jonah was so good while we waited in the hall. He amused himself, turning circles, humming, making random noises, occasionally approaching J or P or me to touch us lightly or lean in for a hug. Of course I’d come prepared with bubbles, octopus, peanut butter crackers, strawberry seltzer, and peppermint tic-tacs. He was as quiet as an NT kid. Probably quieter, for a few minutes anyway.
He even sat down nicely in the waiting room chair for a while
…shortly thereafter deciding to chillax into “punk ass” pose:
I love the punk-ass pose…almost always accompanied by the thumb-suck, making it even funnier
Jonah was great for the eye test too, but the glaucoma doctor seemed to underestimate and overestimate my son’s cognitive abilities. What I mean by that is:
Doc wants to assess Jonah’s left eye only so he covers the right eye and puts the Big-Ass-E up on the screen. Boo probably can’t see a thing but he’s also no dummy. He’s been to dozens of eye appointments, and he knows damn well the first letter they ask him to read is always E. Sure enough, when the doc puts that giant E on the screen and asks Jonah what letter he sees, “E,” Jonah announces confidently. I tell the doc that Jonah knows the first letter is always E. So the doc shows him the second line: A L O.
Not missing a beat, Jonah tells him “E F G.” He has no idea, but has E F G is the standard answer he uses at such times.
The doc sighs and shuffles through some drawers; he finds a card with the letter E on it, and I wonder how this will help since we’ve already determined Jonah will answer “E” to just about anything asked of him. Jonah watches as the doc holds the card up and then turns it to the right, so now it looks like a boxy M.
“Jonah, which way is the E pointing?” Jonah says nothing, so the doc’s next idea is to ask the same question using more difficult terminology.
“Jonah, which way are the E’s tines pointing – up, down, right, or left?’
“E F G,” says Jonah.
“The tines,” the doc tries again. He may ask well ask Jonah for the square root of 3,481*.
“I wish I had my alphabet cards,” I say. This is a good glaucoma doctor, awards all over his wall, but he never seems to remember (or doesn’t understand) Boo — and by now he’s seen him in the office probably a dozen times. Maybe it’s just that I’m too close to it all, and to Jonah — whose language, largely unspoken, I understand.
Finally, the doc holds up five fingers and asks Jonah how many. When Jonah answers “two,” I think we all know there isn’t much sight in the left eye.
The good news, though, is that the doc told us Jonah could have some of his sight restored after the blood cell clouding dissipates. It just remains to be seen (no pun intended). He was concerned, though, about a surprisingly low pressure read in the left eye. He wanted Jonah to get an ultrasound at the other (retina) doc next door, right away. He called to tell them we were coming — and we braced ourselves for the dire possibilities inherent in this plan.
But Jonah surprised us, happily amenable to “doctor number two.”
He actually sat patiently through two eye exams with two different doctors within 40 minutes of one another:
- doctor number one
doctor number two
After the ultrasound, doctor number two said he liked what he saw of Jonah’s eye, and that his right eye looks just fine.
It was a wonderful day. I suppose it’s a little strange that some of my best and happiest interactions with my son are at doctor appointments, but then both the good and bad can happen anywhere – so perhaps it isn’t strange at all.
Yesterday (in the ongoing heat and humidity that will surely mark this summer of 2013) my mom and I drove down to another wonderful day with Boo.
Good day, sir!
While Jonah took his beloved bath, we (meaning mostly me) recited his favorite scene near the tail-end of the 1971 film “Willy Wonka and the Chocolate Factory,” eliciting great smiles and giggling from Boo. GOOD DAY, SIR! I love to hear him laugh.
There was only one incident during car ride to transfer station and I managed to capture it in photos from beginning to end. No one was harmed during this incident, which was mighty nice.
Still relatively happy
We think he didn’t like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.
Andy’s pulling over now. Jonah is almost on the floor, kicking his legs up into the front seat and beginning to cry.
After being bear-hugged and comforted by daddy, Jonah resumes a punk-ass pose.
This time when mom and I drove back to Albany it was with a light heart, and to my lovely musical selection: Guster Live Acoustic.
He has had a good many days in a row, sweet Boo. And he gifted me with many hugs and kisses on Saturday, to last me ’til I see him next, on Wednesday, at the same two doctors in a row (this time planned that way).
I am grateful indeed. Thanks especially to J and P, who as always were a huge help and support.
How I do love my amazing little boy.
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The Never Normal 