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…
“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.
“Before you speak, ask yourself – Is it necessary? Is it true? Is it kind? Will it hurt anyone? Will it improve on the silence?” ~ Sri Sathya Sai Baba
How hurtful we can be without meaning to be. You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not. And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions. We all do it, I imagine. This quote is so wise, whoever Sri Sathya Sai Baba is. I learn lots by researching the person who uttered a quote I love.
I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment. E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned. I love these people and look forward to seeing them almost as much as I look forward to seeing Boo. He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency. No waiting. None. We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything. It’s refreshing. I don’t know how she does it, but I’m more grateful for her than she will ever know.
I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures. I like putting pictures in my blog post. Tomorrow I’ll remember the camera when I go visit Boo, I promise. I wish I had it at his doc appointment. He was parroting in classic echolalia form. “Jonah, sit on the table.” Over and over. He’d had enough at the exact moment she finished gently pulling and prodding his joints.
There are so many things I wonder about my boy. I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it. I know that much. He wants to stay in his room a lot. They coax him out when they can, it seems. I hate thinking about him alone in his room. If that’s what makes him happy, should I be more okay with it?
I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings. They don’t tell you a whole lot beyond basic information but I want anecdotal stories. I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate. I want to know more about my son.
I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles. Of course I just described a fantasy. Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick. He’d hit at me, pull my hair, scratch my face. Is he angry at the world? Is he angry at us all because we just don’t get it, whatever it is?
Some weeks it’s easier to have gratitude than others. Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write. I guess it means every blog post is skewed by its catalyst emotion. I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.
I’m praying for a lot of people. A lot. They all have serious needs, problems, grief. I don’t know what good the prayers do but I like to send them up anyway. I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurt. You are not alone. And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.
Blah blah blah. Some pictures:
Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.
Mama’s lean body, daddy’s tan skin
old days, exploring in the forest near home
Waterboy
daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.
Awareness is everything. I too often play the ostrich, burying my head in the sand. Not a good plan if you intend to see, or move, or live. I have turned a corner, maybe, pushed gently but firmly into the light by my amazing friend R. In part, he wrote to me:
You know damned well it’s the Key to the Garden
To say, “yes”
To be silent to it,
And by ‘it’ I mean everything.
To witness preconceived…
To be the recipient of true mercy,
To repent to the beautiful,
To witness your own suffering from God’s embrace,
Rather than punishing that very suffering,
Locking it in the closet like some kind of monster.
And:
So too do we tend the garden of ourselves,
We become the fountain
from which beauty becomes.
Open your mouth and pour forth.
The graying thorns push forth new roses.
So seemingly impossible it seems
To disentangle from their clutch,
Without losing of the flesh,
When it is merely a step backward,
A patient disentangling,
But Jesus H Christ it hurts.
And:
I could write inspiring and encouraging words, a pep talk Chicken Soup For The Soul,
but I already fell into that trap.
I don’t have a fucking clue what it feels like to be you.
Not a clue.
What the fuck do you know, R?
You don’t know shit.
That is so, that IS so.
I DO know that walking towards life is at once the brave path,
And yet the only one that brings relief.
I do know that fucking much.
That much I do know.
And so I answered “yes,” and something inside me woke up, and I am walking toward life, toward embracing life – all of it, even the suffering and pain – the helplessness and disorder. At Four Winds they call it “radical acceptance.”
Because one of the things I never say here is how close I have been at any given moment to turning away from life completely. How my bones feel like bars of a cage… how often I want to crawl out of my skin… how I feel utterly uncomfortable inside my body. How close I come to running away in a literal sense – to driving until the gas is on empty and then curling up in a ball in a forest somewhere.
Yes, I know how ridiculous I sound.
I can change all of these things. What you focus on expands.
It shall be an amazing, healthy, happy 2013.
And as if to drive this all home, Jonah was wonderful yesterday. My mom and I risked the snow we knew was coming and drove down to Rhinebeck, luckily before any weather had started at all.
Jonah wanted grandma in the backseat and he proceeded to steal her gloves and wear them quite happily (which is funny because he won’t wear his own. Maybe we’ll get him a similar pair as these, which he loved and laughed about having “stolen” from grandma):
The satisfaction of a heist well executed: pulling them on..
Then glancing over to see grandma’s reaction…
I love how he looks like a little guru here, or as if in prayer…
Jonah sang and laughed and ate tune-fish-sandwich and chips and cranbewwy soda. He took his bath and we went for car ride to transfer station (where you recycle).
My mother and I breathed a collective sigh of relief when we started home in the snow…we thanked God, almost in tears, for another good day, for a happy boy.
And later, having arrived safely home, I took a few pictures of the beautiful snow falling on my house and lawn. I put Knockout Ned out there for the ScareMeNot Facebook page, so you’ll see him hanging from our lamp post:
“And what you wished for could come true; You aren’t surprised, love, are you?”
Raymond: 97X. Bam! The future of rock ‘n’ roll. 97X. Bam! The future of rock ‘n’ roll. 97X, Bam! The future of rock ‘n’ roll.
~ Raymond Babbitt in Rainman
Oh, my sweet, precious little boy. What a wonder you are!
This is the third Thanksgiving I’ve described in this blog. Hard to believe.. The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.
Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there. My boo came crashing through the front door, shrieking with happiness. We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.” He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between. All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat? And my mother told him, “yes, sweetheart, as soon as we stop for the train.” It made me feel good; usually he wants grandma in the backseat.
He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY. After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all. Jonah immediately parroted it, really well, too, if I don’t say so myself. 92.3 – WFLY! 92.3 – WFLY! 92.3 – WFLY! None of us could help laughing, which only encouraged him. Giggling, he kept at it for a while, just like Rainman.
So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs. Over and over again he wanted hugs. Bear hugs, he even said. And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair. More bear hug? he pleaded, looking up at me sweetly. Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one. Oh thank you, I said silently. Thank you.
And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.
daddy-hugs
Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us. So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.” Of course grandma let him take the bacon.
Mom and I had coffee afterwards and laughed at Boo’s adorable little ways. We both had tears behind our laughter, but they were mostly good, happy, thankful tears.
I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…
We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore. I guess Jonah has a vocabulary of sight words and he really loves occupational therapy. His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.
There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo. Amazing.
What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids. We waded through the groups of kids and teachers until we found Boo.
They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one. He used to hate stuff on his head — hats, hoods, Halloween costume accessories. When or why or how this changed, I have no idea. In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink: appoo ci-der? milk? cranbewwy soda?
When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out. And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.
Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.
Jonah leads the way to the car.
Jonah being silly as his dad helps him with the car harness
When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.” I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.
And after we’d been back at the apartment for a while, my mom and I left. My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right. I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys. Sigh.
I was just thinking: It has been a long time since I cried over leaving Jonah behind each week. I don’t know what that means, if it means anything at all.
I will also tell you this little not-about-Jonah story:
With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti. Father went to Haiti and helped cut the ribbon on the opening of the first three grades. The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired. And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).
Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year. It’s just $300 per child. That’s $25 a month for a year. Or, as the commercials like say, “for just pennies a day” — but it really is true. Hell, you could spend $300 just buying school clothes and supplies here in the states.
These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake. Unimaginable. Try to picture that happening here, how enraged we would all be. Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.
Anyway, if you can help (in any amount), please click on the link and donate from there. If not, I’ll never know. I wouldn’t judge even if I did. Every cause wants money. I just want to help Father and this school he believes in as much as I can. This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —
“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
― George Eliot, Middlemarch: A Study of Provincial Life
The Never Normal 