It was the first thing Boo asked for when I met him at the car; Andy had just driven up to the eye doctor’s office and I was there, yesterday, waiting for them. “Octopus?” he said when he saw me, reaching out his hand. “Hi, Boo. I’m sorry. Mama forgot the octopus,” I answered, cursing myself. I’ve bought him so many octopi and he destroys or loses them all, or they get so grimy and un-washable we have to toss them away. But next appointment I’ll be sure to have one at hand.
An older picture of Jonah and his “octopus.”
This is a picture of what Jonah calls “octopus.” Any kind of those squishy rubbery toys with nub or finger-like appendages will fit the bill – even those that look like caterpillars or balls. To Jonah they are all octopus.
He was a good boy in the car ride up, and a good boy at the eye doc office, even though we had to wait a good while in a small room.
Daddy played ‘push and pull’ Jonah’s legs while we waited.
After a while, Jonah started turning his circles in the small area, becoming less patient.
You can see where we’ve cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.
We sang “I’ve been working on the railroad” for a while, trading lines, but then he stopped and said “no,” clearly done with that entertainment. Finally, I thought the taking of the pictures themselves might occupy him. Sometimes it makes him mad, so usually when I take photos I do so surreptitiously. But this day he enjoyed it. I took one of him with his daddy and then daddy took one of him with me:
Coming in for a hug with daddy.
Sitting on mama’s lap
Eventually Andy went into the hallway to tell someone that Jonah was fixing to have a tantrum (though he really was still being good) — we knew the longer he was left in the room, the harder it would be for the doc to examine him once she arrived. Soon afterward the doc appeared. She had me take all the tape off his eye shield and remove it altogether; I hoped against hope we could leave it off for good this time. But his eye still looked bloody and the pressure was too high (around 32) – both of which things, she told us, were to be expected.
She put two kinds of eye drops in his eye, one of which stings, and did an ultrasound with blue goo all over a wand against his closed eye. All of these things would bother an adult, let alone a child of 11 with autism. But my little trooper was so good – he patiently let her examine, shine lights, and more while Andy and I waited anxiously.
She said the ultrasound looked like things were much better, and she wanted him to have two more appointments, a week apart.
Unfortunately, we had to put the eye shield back on. Jonah seemed resigned to this and happily gave both of us kisses when it was all over. I needed to return home to work, but Andy brought him to see grandma, and then back to his residence, without much trouble at all.
I was so proud of my Boo.
Thank you to all of you who sent prayers and well wishes through comments, or through my facebook page, or by e-mail, or live and in person, or in your hearts. Jonah loves you all, unconditionally. Mama promises.
“There is no way that writers can be tamed and rendered civilized, or even cured. The only solution known to science is to provide the patient with an isolation room, where (s)he can endure the acute stages in private and where food can be poked in with a stick.”
Boo is much better. He has had good days since Andy dropped him back at his residence on Monday, and he has made only a few, easily-redirected attempts at touching his eye. Next Wednesday he will return to the surgeon doc so she can take a look at his progress. I am extremely gratefultoday – for this good news of Boo…for my mother, whose calm & clean routine (and psyche) were so severely disrupted for far too long. For my therapist and his insights…for all the friends and strangers and work clients who have reached out to me with such sincere caring and concerned support.
Today, though, I am particularly grateful for a new path I have chosen – one, in fact, chosen when I was perhaps just 8 or 9 years old: the path of the writer. It is about as easy a path at which to eke out a living as is any art, which is hard as hell. Finally, though, at the tender age of 43, I have done it – and in the most spectacularly amazing way, completely befitting my personality and skill-set. Now I make my living entirely from writing, and from home, on my computer, often in my jammies. Somehow I work far fewer hours and earn plenty — definitely enough — have amazing benefits and health insurance, and am working for (and with) an incredible group of philanthropists! It is only my first week and already they have expressed great pleasure at my work. The president actually told me it was an honor to be working with me. Me!
I write and I write and I write, with the peaceful company of Jack the dog and Almanzo the cat as comfort and companions. It is the bliss of one left alone to enter “the zone” a writer must find in order to have uninterrupted quiet to do what writers must do – what writers are compelled to do. I am blessed enough to have always known who I am and what I should be doing; I am doubly blessed today to be actually doing it; I am thrice blessed to be working for a charity unlike no other – helping the working poor to become self-sufficient. In fact the charity gives such a high percentage of its money to the people (and not to administrative costs) that it was a 2012 winner of the BBB’s “great non-profits top-rated award.” There are anonymous donors matching contributions all the time, so there is virtually nothing that does not get to the people for whom these grant programs are designed to help.
I’ve been a faithful donor to this charity for more than 10 years, as it has always made sense to me as a place to give my money — where hard-working people can find one-time help to get past a roadblock which would otherwise send them spiraling into the cycle of poverty. Now we are launching an exciting new grant program – and I get to be a part of doing all this good, while doing exactly what I love. I can’t express my gratitude enough and am constantly uttering thank you…thank you…thank you….for this is all I have ever dreamed of and more.
There is the temptation to express disappointment and hurt at the deafening silence from my ex co-workers who have evidently forgotten me & the many kindnesses, acts of support, and affirmation I have shown to them over the years when any of them were faced with family tragedy, personal challenges, illnesses, or just because I felt like committing acts of kindness – for not a single one of them has shown me any support or even acknowledged me with so much as a card – and there were a handful there I really did consider friends. But the hurt melts away when I realize I do not need to harbor any resentment or anger at all (and in fact it would be a waste of time) – for I am free now, and so very happy. I can only wish them all the same. Remember when Amy used to work here?
Thank you, God.
“Anyway” by Mother Teresa
People are often unreasonable, illogical and self centered; Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives; Be kind anyway.
If you are successful, you will win some false friends and some true enemies; Succeed anyway.
If you are honest and frank, people may cheat you; Be honest and frank anyway.
What you spend years building, someone could destroy overnight; Build anyway.
If you find serenity and happiness, they may be jealous; Be happy anyway.
The good you do today, people will often forget tomorrow; Do good anyway.
Give the world the best you have, and it may never be enough; Give the world the best you’ve got anyway.
You see, in the final analysis, it is between you and your God; It was never between you and them anyway.
And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.
The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition. But I can provide some idea of the experience, sans hyperbole.
Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of Willy Wonka and the Chocolate Factory.
And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe. These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye. Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day. Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.
We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face. Why not give up the car rides altogether, you ask? Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace. A thousand times a day, at least, he begged for car ride? car ride? car ride? wanna go see train? train? car ride? wanna see train? car ride? wanna go car ride? wanna see train? car ride?
I promised no hyperbole: a thousand times a day. By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up. It was maddening, the requests. At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum. Oompa oompa? he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched. He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe: “You STOLE fizzy lifting drinks! You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING! You LOSE!”
Unfortunately it was also his least requested thing. In a vague order of repetitiveness, I’d say his requests were most often: car ride? wanna go see train? breakfast san-wich? take band aid off? black donut? lemm-a-made? grandma? all done? (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.
On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music? he asked if it was not on, or loud enough. This meant we were treated to the same 15 songs or so played over and over and over- YAY! More mindless repetition. I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22. I mean, isn’t that how old she is now? Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio. I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?
We were at the train tracks in Voorheesville so often that we met all manner of railfanners.
These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by. They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant. Four reds was bad business and usually meant no train was coming. We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah. He often began begging for green lightthe moment we got in the car for a ride to the train.
that way? he would ask, pointing in the direction he thought the train would be coming from
One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!
Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye
God forbid we had to detour from the exact route Jonah was used to while driving to the train. One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky. We had to go the wrong way, and there was hell to pay. That way! That way! Jonah screamed, oblivious to the burning building and emergency vehicles everywhere. To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.
One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him. Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year. During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was. Hmmmmmm…where to begin?
Sleep was elusive and usually impossible, especially for the first two nights. My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself. When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.
Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.
One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally. So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation. I’ve had quite enough of eye problems, thank you very much.
I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.
The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have. That alone was nearly worth all the exasperation of the week.
When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true. For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.
Jonah and I and Andy have been living at my mom’s house since Jonah’s operation on Tuesday. She has no Internet access so I am running home to pick up clothes and hurry back; Jonah needs constant vigilant attention right now. Although the operation went well and he is okay (thank God), he is uncomfortable, often unbearably demanding (wanna go see train? want breakfast sandwich? want cupcake? — over and over, ad infinitum, and sometimes at all hours of the night), and, at times, extremely aggressive.
He has a follow-up appointment on Monday, after which we are going to try to bring him back to his residence. My mom and Andy and I are scratched, bitten, kicked, and hit on a daily basis, and since Jonah MUST NOT touch his eye it takes all three of us to handle him.
When I return to write more it will be to express far more gratitude than I am feeling right at this moment. I will say, for now, thank God for my mother – for without her I don’t know where we would be or what we would do.
Thank you to everyone who has reached out with caring support. It means much more to us than you know.
Pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley, with daddy
waking up right after the operation
During a calm moment -he got to see his beloved train…
Never deprive someone of hope; it might be all they have. ~ H. Jackson Brown, Jr.
Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye. (Turns out I’ve been spelling it wrong for a while). I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone. It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.
Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible. Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him. At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.
On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.
Saturday Andy was very tired (he struggles with insomnia). I tried to step up and help out more than usual so he could lie down. I gave Boo his bath and offered him small sips of his beloved black soda. I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22. Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.
We went outside to blow bubbles — I hold it? — Jonah asked after I blew a stream of bubbles into the air. I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself. He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.
Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven. Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye). At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim. I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.
Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along. We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate. Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long. A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).
And so Saturday served, also, as an early Mother’s Day for me and my boy. I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him. And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.
I hope the operation goes well. I hope Jonah doesn’t get too sick. I hope we can keep him pain-free. I hope his left eye’s vision is somewhat restored, or at least not damaged further.
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.
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…
Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.
I’d totally forgotten about it so it’s a good thing he did call. E and J brought Jonah up and I met them all at the office. We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him. Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.
Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.
Yeah, that sounds a little like Boo.
He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind. Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.
He wanted to touch and knock at the pictures hanging on the wall. Quiet hands, Jonah, we told him.
He sat patiently, for the most part. Then he’d get up, walk in a circle, and sit down again,
J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.
When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could. He’s fine when he can use his right eye, but his left seems much harder for him. He gets frustrated and tries to cheat. When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person. But today he just gave a half-hearted swat into the air and allowed the doc to examine him.
“Okay, buddy, sit on your knees,” says the doctor. Jonah just sits there. J and E try to help explain it to Jonah, who then rises until he’s standing on the chair. Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.
Amazing.
M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back. After our visit with Boo I’ll hitch a ride back to Albany with my mom.
Sounds like a sweet plan. I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now. Something like 18 each, maybe. I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.
The thing is, every show is different – every show a re-energizing. I’m excited to see them. And Boo.
Resentment:Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.
Andy has brought Jonah to three post-op doctor appointments this week. God knows what would happen if he did not live where he does and have the job(s) he does. E and J have been unable to bring him to his last 4 appointments. What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?
The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.
This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.
Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting. Nobody came out to help us.
Eventually we got him back to the room and calm.
The operation itself was quick. Jonah got sick afterwards and kept wanting to itch his eye. so I used a tissue to gently press on the eye, and I kissed it soundly, over and over. Kiss eye? Kiss eye? Yes, Boo. Kiss eye. Of course kiss eye.
It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him. I have to trust. One of the check-in people on eye operation day noted that Jonah was at a residential facility. She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her. “I don’t trust nobody with my baby,” she declared. It was as if she had slapped me in the face. Who says that to someone whose kid is already in a residential facility? What do you know about why we did it? I wanted to yell.
Jonah & Andy, walking the halls before the room where you gown up.
– – –
And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT. I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most. My mental state becomes fragile when I am confronted by humanity at its worst.
Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back. One witness, upon seeing my face fall, told me coldly to “suck it up.” Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears. It will pass, it always does, I regain the strength and something restores my faith and I keep on going.
Yet there is a lot that’s wrong with all the people in this world. With our priorities and with our ignorance and with our anger. All of us. There are a lot of things one can say about me but I will say this for myself: I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today. So perhaps people like me really shall inherit the earth, like the Bible says. Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).
If I were a Buddhist all of this would play out in my head and heart quite differently. I would be thankful to this person for their challenge to my ability to be compassionate and understanding. I would consider them my teacher. I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more. Perhaps I should just up and go to Plum Village for a while. I need to pound the lessons into my head.
Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT. Burials, burials. An entire community with post-traumatic stress disorder. Pain-filled awakenings from nightmare hours of darkness. God only knows the horror. God help all the mourning people. I just can’t muster much joy in Christmas this year; I have had the wind knocked out of me and am only a stranger, miles away. But I can pretend, and the pretending will become real. Smiling begets smiling. Breathing allows for release.
Hope.
At least I am still able to crawl along. To let go of the resentment. Breathe, breathe. Let it go… Feel gratitude.
“Rich man can ride and the hobo he can drown
But I thank the Lord for the people I have found;
I thank the Lord for the people I have found
While Mona Lisas and Mad Hatters
Sons of bankers, sons of lawyers
Turn around and say good morning to the night
For unless they see the sky…
But they can’t and that is why
They know not if it’s dark outside or light.”
I have not felt like writing.
I’ve been playing online poker and sending out (mostly Christmas) cards,
playing with stickers & markers like a kid
listening to (new to me) old music from the early 70s
(Genesis and Elton John, their really old stuff…)
I’ve been staying up way later than I used to
and trying to unravel the sticky red tape of Medicaid
and trusting it shall be unraveled, soon & successfully.
I’ve been dreaming of the Pacific sun over the Big Island
and not thinking about Jonah’s (4th) eye operation on Monday.
Perhaps some pictures. I’m just so very tired.
He looks like a pissed off mini-Beatle in this photo. And, more and more I think, in pictures you can tell his left eye looks so different from his right eye. Evidently he has just had a haircut, and S, one of his direct care workers, says he is muy bonito. (She speaks Spanish and if I had kept up with my Rosetta Stone, so would I). I can’t wait to see him on Saturday. I couldn’t go last week because I had the kind of migraine where you puke 8 or 10 times and lay there in the bed in between, twisting and pushing your face into the pillow to seek comfort, cushion, relief. Anything, anything. I was so desperate. I’d never hold up under torture.
Jonah is high-fiving E, one of the kick-ass caregivers; she keeps track of all his records and she advocates, smiles, hugs, and is generally awesome. Plus she and J drive him to and from many doctor appointments. Here they are at Jonah’s recent glaucoma doc.
I took this (nothing really happens) video sitting next to Jonah in the backseat of car ride. You can see how all around his lips are chapped (we took care of that in a few days with some Burt’s Bees) and he is rhythmically rocking to some Top-40 song Andy has on the radio she said disdainfully. I like when he gets all smiley and turns toward the window. By the end he reminds me of Carl from Slingblade.
Manzo likes to be inside boxes and bags. The bag is appropriately from the World Wildlife Foundation. <– Just as I typed that M opened the door to let Jack out and Manzo scooted out as well, jumping the fence into our next door neighbor’s yard immediately. I am trying not to panic because I know we can’t catch him if he doesn’t want to be caught, and it’s cold out so he should come back in.
The Never Normal 