Andy drove Jonah up to the glaucoma doc this morning and I met them there. The good part of that is I got to sleep an extra half hour and I got to see my Boo. The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop. Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge. But his left eye is 20/400 (20/200 is legally blind). And so May 14th he’ll have his 5th? 6th? eye operation.
After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.
“Is there anything we can do to treat that eye…to improve the vision?” I ask doc S.
“Well, if he were a normal boy…” he starts.
That’s all I hear. Yeah. If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed.
Why can’t this doctor just answer the question?
He gives me a brochure about glaucoma. It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.
I tell him I have read the brochure. I ask him about that first sentence – the steals your vision part. He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.
If left untreated.
Well you just told me we can’t treat it, I want to yell after his retreating figure.
I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door). But people rave about this guy. He has “Best Doctor” awards all over his office. (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients: an aging, docile population of ‘normal’ people. He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had. It isn’t like Jonah hadn’t been there 10 times or so before.
Grandma? Jonah answers when the doc asks him one of these questions – and where can the doctor go from there? I smirk, turn my head. Way to shut him down, Boo.
And so after the doc appointment Andy brought Jonah to see grandma. They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.
Easter was kind of a blur. Andy drove Jonah up and I met them at grandma’s.
- Easter Boo
My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me. There is no pretense of sitting down to eat and there hasn’t been for some time. It’s better this way. I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter. I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.
I didn’t even go to church on Easter myself. My favorite priest is retired and gone, and I wanted his Easter homily only. I am a one-priest-Catholic, I guess. And now, I love Pope Francis. His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless. It’s not as if I am a good Catholic – or a good anything, for that matter. But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember. I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world. We could all use a leader with a little humility, if you ask me.
Anyway. I don’t really like holidays anymore. My favorite holiday is sleep.
The Never Normal 