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’ttreat 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.
Andy and I are talking, making decisions, struggling to do what is best and right for Boo. I know everything will be okay.
He drove Jonah up this afternoon to visit my mom and me at her house. Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.
When I first arrived, Jonah and Andy were already there. At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda. Root beer? he said, placing the bottle on the counter. It was indeed a bottle of root beer. Andy asked how Jonah knew it was root beer. My mom replied that Jonah knew the look of the bottle.
Then I piped up. “He can read,” I told them. (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).
I picked up a milk carton and, showing it to Jonah, pointed to the word MILK. “What does this say, Jonah?” I asked him.
“Jonah,” he replied with indifference. Enough people have asked me to look at letters and tell them what I see, I almost hear him say. Not you, too, mama. Cut that shit out.
It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D. She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me. She listens as well as talks. This is a skill, requiring awareness. She’s better at it than I am. She’s good at it like few other people I know. Her spirit is bright and ready for a smart, engaging, adventurous future. Go D!
Also I was able to talk to a lot of interesting people over the phone at work. When your job is to be on the phone a lot, you may as well find out about people. You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago. You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine. After all, who can’t see through that pitch when it’s thrown at them?
Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld. It’s all I need right now.
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 andJ 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…
As horrible as I am at math, I like dates and number puzzles/coincidences. And I love that I know others who are like me in this regard. I even know someone who called her friend on May 6th, 1978 at 12:34 to tell him it was 1 2 3 4 5 6 7 8.
Today is 3/13/13 — and it’s also the 42nd anniversary of the day I was adopted, a baby 6 months old, and brought into the Wink house & family – on Friday the 13th, even. I wish I could have been a fly on the wall to see it all go down. Every March 13th I call my mom and my dad (neither of whom ever remember the exact date I was adopted) and thank them for not leaving me to the wolves, an orphanage, or what would have surely been an inferior adoptive family. I was always loved and for that I am grateful.
I wish I could thank whomever fostered me for the first 6 months of my life, only to let me go. Was it hard to let a baby go? Was it hard for my birth mother? How could it not have been?
Was it hard for my parents to really love me right away, or did they have to grow to love me…kind of get to know me? They changed my name to Amy, which means beloved. For 6 months I had a first name only. Like Madonna, or Adele. I was that cool. Tina, I think they called me. But I’m glad I’m Amy because I don’t feel like a Tina at all.
Jonah has had a calm couple of days, and I hope there is a similarly good report tonight. Today was the first day I really smelled spring in the air, though it was only 45-50 degrees, and something awakened in my blood. Maybe Boo feels it too, and it makes him happier. He does love to be outside.
Here are some random pictures to share:
Boo has very long, pretty eyelashes
sweet baby jack
Jonah, holding Fearless Fred & telling me “3” with his fingers
This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.
Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake. I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake. All through the party. Cake? cake? cake? And to be even more specific, what he really meant was frosting? frosting? frosting?
Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.
Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking. Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body. The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet. In all probability it is me who gives him more “junk” food than anyone. He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure. Andy always has salad, vegetables, and healthy things for Jonah to eat. I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.
Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties. Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty. Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites. Maybe that does mean something. One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.
So I will dig a little more every day.
On Friday Jonah enjoyed his mini-party at grandma’s house. She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King. Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did. Jonah rolled down his window and stared at the passing railcars. It was a very good visit. Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.
Boo tries to share a french fry with his birthday balloon
“How old are you now, Boo?”
No answer.
“How old is Jonah now?
I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.
“Guess what, Boo? You’re eleven years old now!”
Evvenyearold, he tells me.
“That’s right, Boo, you’re eleven now. How old is Jonah now?”
I’mtenyearold, he answers, as if to say I just told you.
Gotta love my boy.
a birthday bath – one of two
That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago. And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.
And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.
“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” ~ Albert Einstein
Okay so I promise to not quote any more Nietzsche in rash moments of angst.
I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself. Should that have been exceedingly obvious to me a long time ago? Here I am waiting for the professionals to put all the pieces together.
For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity. And he’s gotten worse. And he’s getting older – he’ll be 11 on Thursday. Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear. All of this everything that makes no sense HAS to make sense to somebody. I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it. Or do I?
There has to be a reason. Or does there? I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world. Or is there? I’m questioning everything I think I know. I need to figure out where to start, to really start helping my son. If I can help.
Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer. I assumed they wanted to “fix” their child or “cure” them of autism. Maybe they are just like me.
When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore. Now Jonah is at a residential facility. And of course before I had a child, I had a million notions of parenting that were better than yours.
God does hath a sense of humor.
Now I have to do something or go crazy with the merry go round of hope and despair. I want to help my son.
This past Saturday, Jonah was pretty good: he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen. No real harm done in either case, and neither incident lasted very long. Of course, we couldn’t figure out a reason for any of it. We rarely can.
Here are some pictures from Saturday. And a video. I welcome all comments. Suggestions. Judgement. I’m evidently working off some karma.
Jonah and an early birthday present Scare-Me-Not, Fearless Fred. Boo will be 11 on March 7th.
Yesterday’s visit with Jonah was surreal. I guess I’m still jet-lagged and I felt like a dullard, all in a fog and very tired. But Jonah was a good boy, calm and smiley. He got his haircut but it looks like all they cut was the front.
still a ragamuffin boy
I gave Jonah lots and lots of mamalove, kissing his hand and his head and his face, giggling with him, hugging him tight. Andy picked him up for visits 5 days in a row, I think, this past week, because Jonah had no school and he was being a very sweet boy. Naturally, Jonah will ask for his daddy to help him do a lot of things now – daddy give bath? Boo is truly a lucky boy to have such a wonderful father.
To come back from paradise to grey skies and this cold Northeast is harder than I’d imagined. Had I no responsibilities, I would short-sell my home and possessions and move – do not pass go – to the Kona coast of the Big Island.
Where we stayed
But I can’t, and I wouldn’t leave my Boo, and I can only hope to visit again. Hawai’i has a whole different feel – mellow, smiling people and breathtaking beauty everywhere. I took more than a thousand pictures. The black lava rock is mineral-rich and yields growth of palm and grasses. It is not as expensive as people say. The tourist places are, of course, but we found delightful markets where we could buy snacks and drinks, and even a tiny eatery where you can get a full breakfast for $5. I met more people than I imagined who now live there but were former tourists who felt Hawai’i’s pull to be irresistable. I understood.
The island sang to me; it got inside my soul. Although I’ve traveled a good piece of this world, no other place has felt this way to me.
No road rage, honking, “us vs. them,” anger, rushing, or stress…and what seems to be a healthy mutual respect between visitors and locals. And my God, the sunsets framed by palm trees. Sapphire waters. Pineapple, mango, apple-bananas, macadamia nuts. Mongoose and dolphins, whales and sea turtles. White, black, and mixed-sand beaches. Weather that never varies from its 75-82 degree breezy perfection. We never saw a drop of rain, though if you travel to other parts of the island there is rain aplenty. It is not crowded at all – I’ve seen crowds 100 times the size at Cape Cod and Ocean City. If you can do it, go. Go! Boo would have loved it; I wish it was in any way possible to bring him. I am going to get that child to the ocean this summer.
Here are a few pictures, of the 1,273 or so that I took!
Buddha Point at the Hilton Waikoloa Village was the perfect place to watch the remarkable sunsets
hangin’ loose with a lovely hula dancer
Even though jonah is an expert swimmer, I can’t even go under water without plugging my nose!!!
“There is love, there is peace in this world. So take it back; say it’s not what you thought
Grab a hold, take these melodies with your hands, write a song to sing… Isn’t such a bad, bad world!”
~ Guster, Bad Bad World
What a wonderful visit with Boo today. Lately he doesn’t want grandma to come with us to transfer station (our weekly recycling destination) so my mom stays at Andy’s apartment and watches Fox News. But just like last time, just like she said, he knew exactly what was for lunch. You could have given me a year and I would have never figured out there was a pattern, even one as simple as every other week. My mom even brought Jonah a surprise – potato chips and dip.
He was in heaven.
“chips n dips?”
He wanted mama to help him at bath time, and it was fun to watch him splashing around all goofy and happy. Kiss hand? was again an oft-repeated request, and we sang his new favorite song, which is actually an old favorite song my mom taught him years ago. We sing it to the tune of “London Bridge:”
Jooooo—na Russ is Grandma’s boy, grandma’s boy, grandma’s boy! Jooooo—na Russ is Grandma’s boy, yes oh yes he i—is…
The care workers at his house know the song, as Jonah has taught it to them.
shaggy hair kid with his lovey grandma
My mother really wants them to cut his hair. It think it’s cute all bushy and long on top, so I don’t push them to cut it.
Sorry, ma.
Jonah, leaning into grandma
And so it must be confessed that Jonah is a grandma’s boy. She’ll get to see him on her birthday, which I imagine will be her favorite present.
I feel a lot of love in my life right now. Thank you all for every time you express it toward me, or Boo, or Andy, or any of us. I’m putting it out there, too, consciously, engaging only in emotions which carry me forward along the river running through the world, which isn’t such a bad, bad world after all. I’m in a card-and-care package-sending-mood, and I’ve been doing things like writing letters to the people (and the bosses of the people) I encounter in the world who are awesome, who have gone above and beyond, whether they have helped me negotiate Jonah’s Medicaid system or just been really kind and friendly to me at the grocery store. I know I’d like it if someone wrote a letter of praise to my boss about me. I hope they all get raises. Perchance to dream…
When the terrible things happen, like the standoff in Alabama with that 5-year-old boy in the bunker with the Vietnam vet, I try to combat the awfulness with goodness, however I can foster it. If I don’t, I lose faith in humanity too easily, too frequently. I become hypnotized by all the anger…by the illusion that any of us is an other to be bullied, manipulated, hated, dismissed, captured, or even killed.
Boo restores my faith in humanity. It happens every Saturday when I walk into his house and he runs into my arms. It happens every time he re-directs himself without an intervention…every time he asks for hug from daddy and I see the beauty in the way they embrace…every time he laughs with his silly, uninhibited, pure joy.
I got some good video of his laughter today toward the end of this 40 second video – and a lot of his turning in circles:
I love how the video starts out with my mother admonishing him for something: That’s not funny… and then at the end how he comes right at me: more hug?
“Laughing brains are more absorbent.”
~ Alton Brown
I like to think Jonah’s brain is a laughing brain.
I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through. But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there. And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice. And partly to document events & things I will otherwise flush down the memory toilet. And for a bunch of other reasons.
One thing I realized is I start stories and then don’t finish them. Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals. I never re-visited that story. Maybe I just forget to re-visit things…0r even mention them in the first place. So today for you I have a list of stuff I’m pretty sure I never talked much about. Some are opinions. Some are confessions. Some are boring. All are true.
1. I got reimbursed in full for Jonah’s $2k Humira refill.
2. In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii. (Yes, my house is being watched).
3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them. Just bought tickets for yet another show; they’re playing near Boston with Dispatch. Someday Jonah will come with us. I hope so anyway. (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).
Saturday June 8th Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP
4. More and more often I find myself wanting to find ways for Jonah to swim. He is so happy in the water. There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine. Maybe Andy can help me find a place down near where they live where we could bring him.
5. I secretly (well, obviously not so secretly) love that Jonah sucks his thumb. He does not flap or rock, but he does walk in circles, and he loves to suck his thumb. I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video). Maybe it’s because I was a thumb-sucker too.
6. Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.
7. Sometimes I feel guilty for feeling happy for feeling free.
“The walls are painted in red ocher and are marked by strange insignia, some looking like a bulls-eye, others of birds and boats. Further down the corridor, he can see some people; all kneeling.
The carpet crawlers heed their callers: We’ve got to get in to get out We’ve got to get in to get out We’ve got to get in to get out.”
I dreamt of strange, vague, nightmarish, nondescript apocalypses, of dying people everywhere, irradiated, burning from the inside out. Of Andy and I trying to get to Jonah. It’s hard to breathe, see, or hear. All food is gone, and the sun is obscured by black falling snow. The car is on empty and finally stops, and a landslide of mud and logs is coming at us, certain death, and I’m trying to handle that but then suddenly we see Jonah in a huge pool. A police woman tells me sternly to remove him from the pool. “There are carpet crawlers on his raft,” she explains, and is gone. Andy and I climb in the pool with Jonah, and Jonah reaches out to grasp one each of our hands, sliding off his raft. He pulls us down to the bottom and we can breathe the water and see just fine and are no longer hungry — and the carpet crawlers are, after all, only on the surface. Then, slowly, the water drains, and we drown gasping in the air.
This following the Guster show Friday night at the Capital Theater in Portchester, NY. Maybe the significance is we had to sit next to four drunken assclowns who drank and drank and drank, laughing and talking through all the songs because dammit we were in the wayback (second to last row balcony) and they could get away with their obnoxious douchebaggery. The girl with the Coach bag asked me to watch her coat in between drinks. I wanted to say “You think there are coat thieves back here in the balcony of a Guster show?” Her steroid-large boyfriend paused his constant texting after every song to hoot and holler, laughing. Why are you HERE? I wanted to ask them. Sigh. I’m getting old.
But then the music took over and I forgot about wanting to punch the moron.
It was an awesome show. I even got a few decent pictures from my far-distant perch:
Ryan and Luke
April, Charlene, Adam, Ryan, Luke
Brian, under spotted light effects
Dwight Yoakam? Isn’t that the country singer who played Dole in Slingblade?
I dislike Westchester. Lived there for a year. But I had to get in to get out. That night I had the carpet crawlers nightmare.
Next morning M dropped me off at Andy’s, where we met my mom and drove to pick up Boo. Everything seemed in slow motion – even Jonah, who was more subdued than usual. Even his lone aggression, aimed at Andy, fell short of notable. I brought Guardian Gus the ScareMeNot for Jonah to hold, and all was right with the world.
Later Jonah took a bath and put his head right underwater.
It reminded me of that creepy dream, but we had a good day and Boo was, for the most part, a very good boy. I hugged and kissed him soundly several times without suffering any consequences.
When I got home M and I took a long nap and then stayed up til almost 2am. Today feels like it should be Monday (because we took Friday off) but then neither of us has Martin Luther King Jr. Day off. It all balances out, but today I’m cooking homemade something and relaxing to episode after episode of All in the Family (speaking of Martin Luther King Jr. Day).
The Never Normal 