Warning: this post goes all over the place. Please keep hands and feet inside the vehicle.
What a wonderful, sweet boy my Boo was yesterday.
Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning. When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?
His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.
This is so Jonah
Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.
Colored straws!
Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.
cool as a cucumber, pimpin’ the Gs
Then we played blowing raspberries (I have been watching All in the Family a lot). Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.
He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:
he thinks grandma’s hand is a teether
Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.
o smiley boo
Oh, it was a good day. A day of grace. A gift to all of us.
At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.
The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago. With his left eye, he could barely read the giant E on the chart.
little boo is better at the eye doctor than most adults are, including me
From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try. If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all. It’s a shot, though doc’s confidence is not high.
I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.
Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F. But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people. To think. Absorb.
There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F. I do think she maybe has difficulty dumbing things down for we lay-folk. I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.
When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.
When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.
And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening. I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me. If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.
When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.
And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.
If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis. How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor. I love Francis’ humility and his gentle spirit. I smile when I read about what he says and does.
I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?) I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.
This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population. Plus I am adopted and it gives me a special connection to them all.
Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all. A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart? Is it all the truths I see in other religions? Can’t I love and pray to Jesus and still believe others will go to heaven too?
Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?
I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.
At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:
“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”
It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?
Please feel free to chime in. These are not hypothetical questions, and I am seeking…
He conquers who endures. ~Persius
The Never Normal 