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March 13, 2013 by The Never Normal

As horrible as I am at math, I like dates and number puzzles/coincidences.  And  I love that I know others who are like me in this regard.  I even know someone who called her friend on May 6th, 1978 at 12:34 to tell him it was 1 2 3 4 5 6 7 8.

Today is 3/13/13 — and it’s also the 42nd anniversary of the day I was adopted, a baby 6 months old, and brought into the Wink house & family – on Friday the 13th, even.  I wish I could have been a fly on the wall to see it all go down. Every March 13th I call my mom and my dad (neither of whom ever remember the exact date I was adopted) and thank them for not leaving me to the wolves, an orphanage, or what would have surely been an inferior adoptive family.  I was always loved and for that I am grateful.

I wish I could thank whomever fostered me for the first 6 months of my life, only to let me go.  Was it hard to let a baby go?  Was it hard for my birth mother?  How could it not have been?

Was it hard for my parents to really love me right away, or did they have to grow to love me…kind of get to know me?   They changed my name to Amy, which means beloved.  For 6 months I had a first name only.  Like Madonna, or Adele.  I was that cool.  Tina, I think they called me.   But I’m glad I’m Amy because I don’t feel like a Tina at all.

Jonah has had a calm couple of days, and I hope there is a similarly good report tonight.  Today was the first day I really smelled spring in the air, though it was only 45-50 degrees, and something awakened in my blood.  Maybe Boo feels it too, and it makes him happier.  He does love to be outside.

Here are some random pictures to share:

Boo has very long, pretty eyelashes

Boo has very long, pretty eyelashes

sweet baby jack

sweet baby jack

Jonah, holding Fearless Fred & telling me "three" with his fingers

Jonah, holding Fearless Fred & telling me “3” with his fingers

A bad cell phone picture of baby Jonah

A bad cell phone picture of baby Jonah

"Silly me!"

a rock cairn I made in Hawai'i

Rock cairn I made in Hawai’i

Happy 31313…

Posted in autism, Uncategorized | 3 Comments »

march seventh, two thousand & two

March 11, 2013 by The Never Normal

Jonah turned 11 on March 7th.

This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.

Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake.   I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake.  All through the party.  Cake?  cake?  cake?   And to be even more specific, what he really meant was frosting?  frosting?  frosting?

Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.

Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking.  Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body.    The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet.  In all probability it is me who gives him more “junk” food than anyone.  He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure.  Andy always has salad, vegetables, and healthy things for Jonah to eat.  I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.

Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties.  Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty.  Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites.  Maybe that does mean something.  One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.

So I will dig a little more every day.

On Friday Jonah enjoyed his mini-party at grandma’s house.  She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King.  Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did.  Jonah rolled down his window and stared at the passing railcars.  It was a very good visit.  Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.

Boo tries to share a french fry with his balloon

Boo tries to share a french fry with his birthday balloon

“How old are you now, Boo?”

No answer.

“How old is Jonah now?

I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.

“Guess what, Boo?  You’re eleven years old now!”

Evvenyearold, he tells me.

“That’s right, Boo, you’re eleven now.  How old is Jonah now?”

I’mtenyearold, he answers, as if to say I just told you.

Gotta love my boy.

a birthday bath - one of two

a birthday bath – one of two

That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago.  And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.

And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.

Carmelo Anthony and me

‘Carmelo Anthony’ and me

Posted in Anderson School, autism, behavior, music, Uncategorized | Tagged , , , , , , , | Leave a Comment »

not really, nietzsche

March 5, 2013 by The Never Normal

“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 his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

Posted in Anderson School, autism, behavior, doctor, grandma, placement, The Anderson School for Autism, Uncategorized | Tagged , , , | 5 Comments »

nietzsche

March 5, 2013 by The Never Normal

Hope in reality is the worst of all evils because it prolongs the torments of man.   

~ Friedrich Nietzsche

Too much too much.  Sliding down the slope, my boy a foot ahead of me and I can’t catch him.  No one can.  My feet were in the sand in Hawai’i and now my head is in the sand here.  But I can still hear what they say and I can still feel the hope slipping away again.  Hope does prolong the torment.

But what else is there?

Tonight I will try to tell more story with less cryptic rambling.

Posted in Uncategorized | Leave a Comment »

from the big island back to boo

February 24, 2013 by The Never Normal

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

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

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 our resort was a great place to watch the sunset

Buddha Point at the Hilton Waikoloa Village was the perfect place to watch the remarkable sunsets

hangin' loose with a lovely hula dancer

hangin’ loose with a lovely hula dancer

even though jonah is an expert swimmer, i can't even go underwater without plugging my nose!!!

Even though jonah is an expert swimmer, I can’t even go under water without plugging my nose!!!

???????????????????????????????

Whales...

Whales…

...and sea turtles...

…and sea turtles…

...and dolphins...

…and dolphins…

...oh my!

…oh my!

and the view from our balcony (lanai) at sunset

and the view from our balcony (lanai) one sunset

Posted in autism, behavior, grandma, haircut, swimming, Uncategorized | Tagged , , , , , | 5 Comments »

nemo our nemesis?

February 8, 2013 by The Never Normal

Marlin:  I just can’t afford any more delays and you’re one of those fish that cause delays.  Sometimes it’s a good thing.  There’s a whole group of fish; they’re called delay fish.

~ from Finding Nemo

Actually, says LiveScience.com, Nemo isn’t meant to refer to “Finding Nemo.”  Bryan Norcross, a TWC meteorologist who helped conceive the storm-naming last year, told the New York Times, “Nemo is Latin for “no one” or “no man.”  It also refers to Captain Nemo, the Jules Verne character from “Twenty Thousand Leagues Under the Sea.”

So here’s Winter Storm Nemo, and our cancelled Saturday a.m. flight has been rescheduled for early morning Monday.  I guess even if our area and its runways were cleared up by tomorrow, planes everywhere are grounded and they’ve got to get today’s stranded travelers out first.

Our new schedule gets us to our airport in Hawaii almost exactly 2 days after we were scheduled to go.  I was all anxious, pissed, and freaked out for a while; I spent hours on the phone on hold (and, eventually talking to) the airline, before finally, today, booking another flight.  We’d discussed taking all manner of trains and other flights (if there were any, and there weren’t) and even renting a car and driving to our next leg of the flight, but they all turned out to be ridiculously expensive and full of hours of time and hassle.  In fact our second leg of the flight was cancelled as well, so we would have done it all for naught.

Then we realized:  It’s not like we have to be in Hawaii for a wedding, or a funeral, or a graduation.  Nobody is there waiting for us, and nobody will be angry if we’re late.

And so, strangely enough, (but really not so much for my life) this has turned out to be not so bad at all.

    • We can take our time packing; we can laze around in jammies, eat delicious food, watch episode after episode of All in the Family, and enjoy the snow falling, because neither M nor I are at work today.
    • In 4.3-6.3 hours, Expedia will call me back and I’ll find out what to do about the car, hotel, and one of the scheduled activities.  And I bought the travel insurance on top of the regular flight insurance, so we’ll get money back.  (I call it “saving money the Nemo way”).
    • We’re not stranded in an airport for hours upon hours, uncomfortable, tired, angry, then resigned to the inevitable Purgatory of Travel Cancellation Land.  We’re cozy comfy in the house.
    • I called Hawaii, got through immediately, and canceled the one activity I’d booked directly – a dolphin swim (since we won’t even be there for it).  The weirdest part of it is right after I hung up the phone, we found a show on TV about how dolphins attack and are really vicious creatures.  Um, really?  Had to laugh.  We may end up booking it again once we get there, but so far that saves us way more money than I’m willing to publicly admit.
    • I will get to see Boo again before I leave.  It’s really kind of perfect.  I miss him already, and this will be a sweet bonus!

And so I sit out the pretty storm of sifting snow.  I’ll go with my mom to see Boo on Sunday, and immerse myself in a vacation which has already commenced, whether it be on a beach of sand or snow.

My timing turned out to be impeccable!

My timing turned out to be impeccable!

Dory:  This is the Ocean, silly, we’re not the only two in here!

Posted in Uncategorized | Tagged , , , , , , , , , | 2 Comments »

aloha

February 7, 2013 by The Never Normal

When my grandmother was in her early forties, she visited Hawaii & was pulled out of the audience at a Don Ho concert. He told her he would teach her the hula dance. “No,” she answered. “I’m going to teach you the Charleston.”
So she did.
Noreen Ruth Wink

Noreen Ruth Wink

She was a strong-willed lady, my grandmother, and she loved Boo dearly.

She died on October 30th, 2009.

When I am in Hawaii I will smile, thinking of her doing the Charleston at a Don Ho concert.

Aloha, for now.

Posted in Uncategorized | Tagged , , , , | 6 Comments »

whose boy is he?

February 2, 2013 by The Never Normal

“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

“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 kidwith his lovey grandma

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

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.

Posted in autism, grandma, haircut, singing, Uncategorized | Tagged , , , | 6 Comments »

in ten days for ten days

January 29, 2013 by The Never Normal

I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through.  But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there.  And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice.  And partly to document events & things I will otherwise flush down the memory toilet.  And for a bunch of other reasons.

One thing I realized is I start stories and then don’t finish them.  Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals.  I never re-visited that story.  Maybe I just forget to re-visit things…0r even mention them in the first place.  So today for you I have a list of stuff I’m pretty sure I never talked much about.  Some are opinions.  Some are confessions.  Some are boring.  All are true.

1.  I got reimbursed in full for Jonah’s $2k Humira refill.

2.  In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii.   (Yes, my house is being watched).

3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them.  Just bought tickets for yet another show; they’re playing near Boston with Dispatch.  Someday Jonah will come with us.  I hope so anyway.  (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).

Saturday June 8th
Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM
Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP

4.  More and more often I find myself wanting to find ways for Jonah to swim.  He is so happy in the water.  There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine.  Maybe Andy can help me find a place down near where they live where we could bring him.

5.  I secretly (well, obviously not so secretly) love that Jonah sucks his thumb.  He does not flap or rock, but he does walk in circles, and he loves to suck his thumb.  I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video).  Maybe it’s because I was a thumb-sucker too.

6.  Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.

7.  Sometimes I feel guilty for feeling happy for feeling free.

So it goes.

Posted in autism, behavior, swimming, Uncategorized | Tagged , , , , , , , | 8 Comments »

freude schöner götterfunken

January 27, 2013 by The Never Normal

freude schöner götterfunken = joy, beautiful spark of the gods

Oh, the joy of an incredible day with my Boo.  And I learned a thing or two.  I’ll commence in telling you (says Dr. Seuss).

My mother can be exceptionally discerning.  She started to notice that Jonah, when we first pick him up, greets her by declaring what there is for lunch.  I’m not saying Jonah is psychic; it’s not like there are 100 items on the menu.  But it is interesting nonetheless because she makes tuna sandwiches one week and turkey the next, in a routine from which she does not vary.

Still, when she declared to me yesterday that Jonah tells her the right kind of sandwich on the right week, I doubted her.  “You watch,” she said.  “Today he’ll say tuna.”   And sure enough, when we picked him up yesterday, the first words out of his mouth were “tune-fish samwich?”

I realize how this may not seem like an accomplishment worth mentioning but I thought it was incredibly cool.  He remembers things very well.  He knows where he is in the world at all times, even when you think he’s not paying any attention. He’s no Rainman, but he does have a few strange, fascinating “splinter skills.”  (There are reports of individuals with an incongruous repertoire of abilities: apparently general cognitive impairment coupled with outstanding performance in specific areas, such as music, drawing, calculation, and memory).

Two or so years ago he started to utter the alphabet backwards, fast.   Who can do that?

And I’m not sure his swimming abilities are a splinter skill too but nature (God?) made him completely at home in (and under) the water, happily Pisces, a true fish who is unfortunately out of water most of the time.  If I had the money I’d buy us a private tropical place and hire a team of caregivers and teachers, and we’d swim every single day, with dolphins and manta ray, and he could run up and down the sands and jetties as fast as his long, lithe legs could carry him.  I have to get that child to the beach again.  I need to find a way.

Now I’m rambling, unfocused.

Yesterday.  On the ride from Anderson to Andy’s apartment, Jonah wanted me to kiss his hand.  He proffered said royal hand to me from the backseat.  Kiss hand?

The Godfather would like his hand kissed.

The Godfather would like his hand kissed.

Yes, Boo, of course kiss hand.  I kissed each finger and then pretended to suck his thumb, eliciting much joy from Boo.

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine...

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine…

He still has the chafing around his mouth.  I will call the nurse tomorrow.  We think it’s from the Methotrexate and the Humira, or both.  Side effects and more medicine to treat the side effects.  Sometimes I want to take him off every single med and see what happens.  Titrating him, slowly.  I don’t know if I am correct in this feeling.  It isn’t mother-instinct.  Just a question.
Look at all that hair on the top of his head.  The back is relatively short and the overall result is a ragamuffin look I really don’t mind.  It’s my mom who would like to dictate the length of his hair, not Andy and me. I think they should color it a deep blue.  He’d LOVE it.   Just no mullet, please.

I don’t know why I didn’t color my own hair a deep blue when I was younger.  I guess because I’ve always had a job, and since I graduated college in the early 90s they’ve frowned upon blue hair unless you work at a head shop.

If I ever don’t have a job I’m going to color my hair deep blue for a while.

I think he looks angelic here, with the sun all on & over him

I think he looks angelic here, with sun all over him

I really don’t care if he has splinter skills or not, of course.  I just think he is a fascinating manifestation of a boy, and on top of that I get to be his mother, albeit imperfectly and frightened as hell at every turn.  And yesterday:  more kiss?  more kiss?  At the apartment and on car ride to the transfer station.  More kiss?  More kiss?   Beautiful words.  Treasured words.  Joy.

Joy, beautiful spark of the Gods.  freude schöner götterfunken – from the Ode to Joy by Ludwig von Beethoven (Gina’s favorite composer).  They played the Ode to Joy as Andy and I exited the church with heartsmiles on our wedding day, August 19, 2000. — I’d sung the Ode to Joy in college with the Catskill Symphony Orchestra.  On that day – my wedding day – I felt joy so strong I almost couldn’t take it.  The day was a perfect sunny 70 degrees, as if the weather were celebrating with us.  There is still celebration in it, no matter how the subsequent years have unfolded.  You can’t take that kind of joy away, not ever.

I live for it.  Like an open window from which you can glimpse heaven itself.  It’s in the uncontrollable laughter, the uninhibited play, the favorite books, the embrace of a partner, the eyes of your child, the song that lifts you, the friend who shares, the pets who love unconditionally, the innocence that brings tears to your eyes, the purity of grace which cannot be denied.

My favorite love poem.

XVII (I do not love you…)
by Pablo Neruda

I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.

I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.

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