it was just a year ago that we tried medication for the first time. the guanfacine knocked him out like a sleeping pill. no good. we tossed that out. the 12.5 mg of zoloft did nothing. at 25 mg, it seemed to help. but did it? hard to say. it seemed to help with a host of things that stem from the anxiety. at 37.5 mg, it was even cloudier. some days, it seemed no different than 25 mg; other days, it seemed to make him more agitated. so we dropped back to 25 mg. but then months past and we honestly couldn’t say that the 25 was doing anything, and if that’s the case, why give it at all?  some might say, you ought to have gone even higher, tried 50 mg, 75. 100. maybe. maybe. the whole thing makes me feel sick inside, to tell you the truth. 

 so. nothing since september when we began working with a new (ostensibly) amazing doctor. weeks and weeks of intake. i won’t go into what happened at the end of that ordeal. we never even got to the medication trial so, thankfully, fluffy was spared that roller-coaster. but the boy needs something. that’s clear. maybe that’s what this whole year has been about, making it crystal clear to us, his parents, that, despite all the very real concerns about psycho-pharmaceuticals, too much of the time, fluffy operates in a fucking hailstorm, poor guy. from where i sit, it looks like a white-out in there, in that beautiful head of his. he needs some help, some all-weather gear, some special goggles. some damn thing.

yesterday was a new day, a new month, a new year. it was also a hard day in this house. i can’t say we dealt with it perfectly. the aggression. it’s hard. in a multitude of ways. i can see that fluffy’s using restraint. he is. but simply put, i don’t like being poked and hit, punched and yelled at. i become weary. i know it’s awful for fluffy, too.

i did a bunch of clearing out. the tree came down. the decorations put away. it was a fine holiday but i’m all done it, ready for a new beginning. i found the thanksgiving turkey wishbone behind the dish drainer and after dinner, fluffy and i each made a wish.just before we gave it a yank, fluffy said, shall we tell our wishes?

sure, i said.

i got the bigger piece. i wanted him to get it, to get the bigger side and his wish.

maybe we both wished for the same thing, i said.

what did you wish for? he asked.

that the new doctor will find a medicine that really helps you feel more in balance, i said.

i wished for a solution to the hitting problem, he said.

we looked at each other. he pointed first to his head, then to mine and beautiful grin appeared. “hive mind, mom!”

Honestly? I haven’t been here because I couldn’t imagine what I would say. I had no wisdom to share. Zero. I’d look in the wisdom basket and it was empty, time and time again. Same with the wisdom cup, bowl, bag, drawer. All empty.

M

T

Fluffy is 10 years, 8 months.

I am 51, 359 days.

We both still have our struggles. Our good days. Our not so good days.

I’ve been reluctant to write about it. Fluffy is at the age where I feel it’s overstepping to write about his challenging times. (Frankly, Fluffy’s at the age where I feel it’s time to stop calling him Fluffy. Some people believe that moment arrived seconds after I first called him such a thing. Fluffy. What kind of a nickname is that for a kid?)

His challenges are his business. But they’re also very often connected to my challenges. And so the question I haven’t been able to answer is, How do I write about my challenges with his challenges without violating his privacy?

I haven’t been able to figure out that.

So, I talk to Dave.

I talk to a friend.

I talk to the air. The air is pretty helpful, actually. Helps me breathe while I’m trying to figure shit out.

Why write today, then. Hmm?

I’m not sure. It’s nothing earth-shattering. I mean, I have emerged on the other side of a rough patch–the last month or so in particular–with something, if not exactly wisdom. I know when I’ve come to a place like this by the state of my office. When I moved the piles and stacks from my desk to the floor, I know I’m shifting. I keep thinking of that scene in Apollo 13 when NASA has to figure out how to keep the astronauts alive when damage to their ship threatens their oxygen supply. The guys on the ground race into a room and dump a load of stuff on the table–everything the astronauts have up to work with up in space–and scramble against the clock to build something that will fix the problem before they all suffocate, a way, as I recall, to construct a thing that will connect a round to a square. Or the other way around.

I’ve got all my stuff dumped out on the table, in real life and inside my head. It’s all out there. I’m not making any snap judgments, just spreading it all out to see what might connect a round thing to a square hole or a square thing to a round hole.

Looking for connections.

I’ll let you know if I make any progress.

Carry on.

i’ve been reading the daily lessons, doing the assignments, practicing the art of who knows and what ifs and why nots because the art of living in possibility is like anything else, a practice, a muscle that needs consistent strengthening.

this morning’s entry told the story of a jen’s dad, a man who never stopped believing in his dreams even though the outer world brought disappointment, unexpected delays and obstruction. he was creatively resilient and optimistic, connected to his imagination, his ever-percolating mind. i loved the image of him she painted, in the back yard with a cigarette, scribbling ideas and numbers on napkins. it was romantic and inspiring like all the lessons in Mondo Beyondo. inspiring and yet, a tiny bit worrisome.

see, even as i log on and read, do the exercises and assignments, dare to write my mondo beyondo list, even as i absolutely believe in the power of dreaming, in unearthing and nurturing our deepest desires that may or may not make sense or seem out of reach, i’ve been wondering lately if the mondo beyondo is not for me but for others, others who have something i lost or something i lack, something i never had the courage to reach out and hold and so therefore missed out on. i don’t walk around with this beating me down but rather notice it from time to time like a mist in the corner of my eye, obscuring the distant view.

a few weeks ago, i became aware of a desire to draw. and i listened.

i found myself at the computer, messing around with photoshop, a program i barely know. i was using my mouse as a pen. it was clunky and odd being but also interesting and risk-free. i could cut and paste and undo and erase, turn everything black, green, pink, back to white, scrap the whole thing, start again. i’ve drawn here and there over the years, little spasms of lines and color and then spent years and years not lifting pencil to paper. over the past few days, i’ve done a handful of drawings and just yesterday, i found myself fantasizing about turning the guest room into a studio for making art.

it doesn’t necessarily make sense but the image of being under the skylight drawing and painting in my bare feet delights me so i’m letting it simmer, seeing where it takes me.

this morning, i sent a few of the drawings to my sister, a kindred spirit. we’ve long talked about our unexpressed selves, our creative urgings and creative stuckness, our worries and perplexions about how to bring more of our authentic selves to the world. we’ve gone over the whys, the places where we weren’t given what we needed as kids or teenagers or adults, the messages we took in about what was possible or practical, the ways we’ve walked inside the confines of these limiting views. i, for one, know this has absolutely informed the urgency i feel about growing a feeling of competence, able-ness, in fluffy. if there’s one thing i want to do in this life, it’s to communicate to him through my words and day to day life, that anything is possible. the only way to do that is to be engage in the lively exercise of learning that myself, no matter my age or my training.

my sister wrote back and said, listen, this looks like fabric design to me. let’s start a business! together! somehow! let’s do it!

i wrote back, YES!

we don’t know what’s next or how but we are committed to saying Yes and seeing where it takes us. i’m not sure how it fits in with writing or making a living and i certainly don’t know or want to think about how practical it is. i just want to follow this impulse and see where it takes me.

maybe mondo beyondo is not beyondo me?

self-portrait; april, 2011

he’s always been like this but it doesn’t really fly anymore. it’s not going to win him points in the shark pit of his peer group or frankly, anywhere. we’re working on appropriate while trying to convey healthy attitudes towards ones body, towards pleasure. i don’t know how many times we’ve said, yes! that feels good. it’s meant to. it’s part of the plan. but it’s private. you simply cannot do it in public places or in front of other people at home, even mommy and daddy.  okay, he says, and sticks his hands down his pants.

dave calls him napoleon bone-a-pants. that’s become his signal to fluffy, a reminder, hey buddy, they’re down there again. i can’t seem to remember that. i usually just squawk, hands!

we’re also working on improving his aim. in the bathroom. the credit system works pretty well around here. fluffy earns points for various things. incentive. he spends those points on privileges and treats. most of it goes to computer time. this may sounds ridiculous but for the last week, he’s been getting 2 points for every pee that goes entirely into the toilet. for this to happen, i coached, he must watch the pee the whole time. from first spurt to last drop. since he’s in there on his own, the points are awarded on the honor system. we can do this. fluffy, though skilled in the art of debate, is not a liar.

this morning he came trudging in for his morning pee. i was in the bathroom already, irrigating my sinuses with dave’s neti pot. (as an aside, ought i to get my own neti pot? is this the sort of thing partners share?) i’ve been trying to cure my sinus infection for the last 10 days. (another aside: we’re an open-bathroom-door-walk-around-in-the-nude-household. the only time the bathroom door gets closed is during more serious bathroom business.) as i rinsed out the sink, fluffy began to pee. i watched out of the corner of my eye. he was looking straight down at it. you go, buddy, i was thinking. he continued. quite a stream. impressive. we’re all big pee-ers here. he kept watching. it was looking like a solid 2-pointer. then he leaned, looked to the side. the stream leaned, edged toward the back rim, closer, closer, and then it went over the top, through those little toilet seat holder points, onto the back ledge and onto the floor.

honey! the pee! you need to watch it the whole time!

i know. okay. okay, mom.

sweetheart–

okay okay mom!

may i ask? why don’t you use your hands?  i’m not an expert, but i don’t think there is a boy around who doesn’t need a hand to direct it.

okay. okay, mom!

i don’t mean to nag. i’m really curious. why don’t you hold it?

(at this point, dave came shuffling in wearing his bathrobe. i was nude. fluffy had his pants down.)

it is curious, dave said. it’s the only time of the day you’re not holding it.

i don’t know, fluffy said. then that smile appeared and spread across his whole face like a sunrise and he added, i guess i just don’t think it’s appropriate.

so. i’m logging on to combat the inertia. to dash something off. even though i don’t have time. even though i have nothing clear in mind to say. hmm, let’s see what comes up. oh, here’s something:

1. a few hours ago i nearly had a fist fight with a mean mommy at vision therapy. she was rude to fluffy and rude to me. i opened my big mouth and said, what’s the matter with you? why are you mad at me? what did i do to you? i wished i had made a crazy gesture inside the private room of my mind and glued my lips shut in the very public waiting room of the real world. there was another mommy in the waiting room and she chimed in. it’s true! she said, jumping to my defense. i’ve been watching the whole thing and you’re taking your anger out on her for no reason! for a second, i felt pleased. vindicated. ha! take that! words were thrown around like a cafeteria food fight but very quickly i felt icky. i’m a confronter by nature but i don’t like it. i like when blue birds are flitting about and everyone is drawing smily faces and swapping recipes. i don’t know what this woman’s story is, was, may be. i willed myself to stop and seconds later the eye doctor called us in and saved the day.

2. she gave us the results of fluffy’s vision re-test and tadaa! after 6 months of weekly visits and daily eye exercises that have been tedious and grueling for fluffy, he has graduated from vision therapy!

3. i wished i could have said something to the mean mommy, something simple and expansive without getting into details like sorry about all that but by the time we left the place, both women were gone. fluffy and i went home, he to E. the magnificent sitter, me to my messy desk where for the last two hours i’ve been trying to get work done in between trips to the internet to read up on various things, none pressing. casey from american idol, for one. he’s got my vote. i love that james durbin, the young man with aspergers and tourettes, the one with the sweet fiance who leaves encouraging notes all around their house, the one with the sweet baby gurgling on the carpet. ‘he’s got an unfair advantage,’ my friend says. ‘autism. you know, perfect pitch, absolutely no self-consciousness on stage.’ which goes to show you how individual autism is because in her house, it’s true. her son has perfect pitch and a truckload of performance gifts and not a shred of awkwardness on the stage, dancing, singing, acting the lead in show after show and he’s all of ten. but in my house, animals howl when fluffy sings and the mere mention of acting something out is so agonizingly embarrassing, he might sock you in the nose.

4. someone forwarded a report on radioactivity. apparently, increased levels of radioactive iodine have shown up in massachusetts rain water. i, in turn, forwarded the article to a friend of mine and she wrote back “Bummer. I’d like to take all the nuke owners, who lie about the risks and cut corners on maintenance and safety, and air drop them into the reactor core in Japan. Then we can study them and see how safe it all is. Also, all owners should be required to live on the complex with their reactors and children, and eat only food grown on the property.” these comments struck me on many levels: (a) funny because she was clearly being outrageous, (b) frustrating because it would be impossible to enforce such a thing yet its outlandish nature ought to be enough for everyone everywhere to begin dismantling every colossally hazardous nuclear facility in existence, and (c) comforting because, well, maybe she would have yelled at the mean mommy in the waiting room too.

we’re trying to encourage the fluffyster to log some thoughts and ideas on games, his favorite topic. he loves to play them and talk about them and invent countless variations to existing games but whenever i suggest jotting down his ideas, he resists. don’t know why. (any thoughts, dear reader?)

writing is ghastly for him. typing is not much better. i’ve signed on as his secretary, perched on the edge of my swivel chair, eagerly awaiting, coaxing, cajoling, encouraging a word or two to get the process going.

today, i suggested an interview. he agreed and the moment i pulled up the screen, his usual bubbling stream of shouts, songs, hums, words, questions, answers, proclamation, etc., vanished into thin (but warmer today–i actually had the window open for a few minutes!) air.

here it is. a comment or two would do wonders.

i don’t know why it took me until i turned 51 to establish practices that truly support my life. don’t know why. i think i used to have the wrong impression of myself. i thought i was rugged and scrappy, a fly-by-the-seat-of-my-pants sort of gal that didn’t need anything special to function. i think i judged the high-needs people i met, the ones that needed to go to a particular place to order a particular thing and if it took hours, then so be it. i was very impatient with that–come on! just get the other thing! or just get by without it! why do you need some special attention???

but i’ve come to find that i need quite a lot, in order to function well, that is. i need to eat certain foods and not others if i want my body to feel good. i need to take my time getting ready for the day, a nice long bath, a hot shower, a scrub-a-scrub with the dry brush, special creams for the various parts of the face. i need to sit in meditation in the morning, drink water, sip a particular tea out of a particular cup, the yellow sunshiny cup, do a bit of brain gym to start my day. i need to stretch, do the yoga, even if it’s five minutes. i need to wear the clothes that make me feel comfy and stylin’, whatever my particular style is that day, funky or girlie or sleek or classic or home project-y or yoga-mommy, or what i like to call the warehouse look–kind of butch and artsy, so if i could feel great even if i spent the day inside or so that i wouldn’t feel like a piece of doo doo if i ran into someone i felt insecure around, sort of envious of or threatened by, and wish i could slip into a doorway to hide.

i need practices to keep me flexible, resilient, connected. i need to write in my gratitude journal every day, to practice gratitude. i need to sit in quiet every day, practice mindfulness. i need to watch or read or hear something that cracks me up, to lubricate the sense of humor. i need to dance vigorously (i put on pandora and danced around like crazy to at least one song!).  i need to read every day; sometimes i’ll have a chunk of time but others, i may only have ten minutes. it doesn’t matter, as long as i am practicing my curiosity. for example, at fluffy’s vision therapy the other day, i read people magazine in the waiting room. i learned about a group of five women who all lost one of their teenage children–a car accident, a freak episode while sleeping, illness–and banded together to raise money to open new schools in struggling countries. wow. that’s amazing. i love those women!

and i need to write every day.

i’ve been reading a SARK book. she’s very wise, especially around the writing. she writes:

to write your life you dare to dream your writing life into existence.

you dare:

to be seen as flawed

to release yourself from procrastination and perfectionism and write anyway

to embody your own story

to write the rage and ordinary and dumb details

to write yourself open

to be viewed and projected upon as wildly successful and ingenious

to write through the closures and scars and insecurities and sometimes loud voices that repeatedly  say: HOW DARE YOU?

and answer just as profoundly,

this is how i dare.

i’m needy! imagine that! this realization reminds me of when i kept my numbers in DA (debtors anonymous). i wrote down every single thing i spent money on, every single thing. after a month, i categorized and added it all up and i tell you, it was a mortifying and shocking and enlightening experience. it made me so uncomfortable to see how much money i spent on myself, what it took to take care of me even though i wasn’t spending a bundle by any stretch of the imagination. it was more about this very basic thing: i have needs.

the funny thing is, the more i embrace my neediness, the more clarity i get about the details, the particulars, and the more i honor them, the more i have of me to spend everywhere, here at home and out in the world.

i was talking to dave about this and he (always ready to take credit for my spiritual growth) said, yes honey! that’s the gift of our marriage! when you married me, you thought you were happy and easy going but i taught you how tortured and needy you really are!

ah, love.

He wasn’t expected to make it through. She hasn’t been with him in ages so it wasn’t so much her feelings about him and their past relationship that seized her heart but the one between him and their son, my nephew.

Without revealing personal details, I’ll just say this man has struggled with showing up, following through, and assuming responsibility in the ways one usually associates with being a parent for most of my nephew’s twenty years of life.  My nephew deserves better but addiction is a disease and once its got you in its grip, its a herculean feat to wrestle your way out. I truly believe that. We’ve all got personal choice in our pockets but sometimes life deals you shit that pins your pockets shut.

I got in the car and made my way two hours east on the Mass Pike towards the intensive care waiting room to meet my sister and her son not knowing what would happen when I arrived. Not knowing if this man would be dead or alive. It was the sort of event that propels everyone into a heightened state–how could it not–but as I drove, I thought, aren’t we always a hair’s breath from this place, whether we realize it or not?

He did make it through the surgery. My nephew had a chance to see him in recovery, had a chance to touch his big toe, lean down and whisper in his ear. But his father didn’t flutter his eyes in response like they do in the movies, reach out for his son’s hand to grip it surprisingly well despite his weakened state. He didn’t provide the Hollywood moment.

He still might. He might. I believe in miraculous turn-arounds. In second chances (or in this case, third, fourth, and fifth chances.) It’s very early in his recovery, much too soon to say what his future holds.

Once the initial crisis was passed, my nephew went back to school. It’s close enough by for him to keep tabs, return when needed. There’s no reason for him to suspend his every day life when what’s next is a long, slow process. And he’s got a sturdy group of support from his buddies there. I stayed with my sister for the day. As an aside, I must say, Fluffy’s reaction to my leaving unexpectedly and staying away a whole day–a weekday at that!–did not go unnoticed. He was totally fine–interested in what happened, concerned about his cousin, and appropriately concerned about this man he didn’t even know. ”Aw. I hope that man doesn’t die.” he said as I hugged him goodbye and then he ran off,  climbed inside his barrel and shuffled it along the carpet before crashing himself down on the mat. (Go Heavy Work!)  E., the magnificent sitter came and Dave stepped in to fill the spaces with ease.

My sister and I had a wonderful day together, despite the dire reason for our unexpected visit. We drank green smoothies (my new passion–that’s for another post), sipped tea, looked out the window, and followed our conversation turns in an unhurried way. It was sunny and warmish out but we didn’t go for a walk. We didn’t actually leave the house at all except to stand in the doorway and let the dog and cat in and out. It felt too should out there, you know? The should of being outside, breathing in the air, moving our bodies. “Let’s do what we want,” I said. “What do we want to do?” Watch a movie. And so we watched The World’s Fastest Indian.

Dave and I saw it when it first came out. We were in Arizona visiting my mom at the time. Fluffy was a maniac and I was of the hooded eyelids and stygian mood, my face flattened by my feelings of fear and incompetence. My mom took over with Fluffy and booted us out the door for a rare date. That film turned me around. Afterward, I burst through the theatre doors into the parking lot absolutely exhilarated, my mood completely transformed.

It was as good the second time. In fact, it was better. I became aware of a new motif. The movie was about following your heart despite inner and outer obstacles, despite what people say and think, despite how foolish you may appear, despite everything pointing to you having missed your chance. But it was also a movie about how close we all are to death at every instant. Death hovers at the edges of this film in countless scenes providing an inescapable tension. I don’t know how I didn’t notice it before.

It’s like life, we traipse around forgetting most of the time that there is this steady undercurrent of our mortality. I don’t mean to be morose. In fact, this realization for me made the movie so much more alive, pulsing frankly, and inspired. There are countless perils in this world; my nephew’s dad in the intensive care unit, tubes and monitors surrounding his comatose body; the thousands displaced and missing in Japan; those living with chronic and acute illnesses, jeez, every time you walk out the door, get in the car, step on a plane, frankly, every and any second as you go about your mundane existence since we know from watching Six Feet Under, mortuary customers arrive every day from freak accidents.

Tick tock.

So, how do we do it? How do we keep this in our consciousness but not live in fear?

Most of the time, we chug not thinking about how near death could be. We shut it out and carry on, hoping to find that groove where everything feels good, hoping it stays that way, hoping harm doesn’t come to anyone we know, certainly not those who we hold most dear. I certainly prefer when I feel good, when Fluffy is doing well, when Dave and I are getting along, when my friends and family are happy and healthy. I hate death. I’m fine with it intellectually, circle of life and all that, returning to the earth, etc., etc., but in the thin atmosphere of the dark house alone in the middle of the night, my intellect passes out and my limbic system start to hyperventilate. I want to be alive for as long as I can!

By morning, the air is plump and death is far from my thoughts but now I don’t think that’s good. Instead of narrowing my view and shutting out thoughts of death, I ought to expand and keep death in the picture, however shadowy. Maybe I would come to see him as not the threatening, menacing grim reaper with a rusty scythe but rather an ill-equipped cheerleader, simply-clad with a sharp pom pom. Right? Maybe he’s cheering me on, trying to bring my dreams into focus so I can act on them while there’s still time.