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This is all I’ve got to say right now, damn it.

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

~ Theodore Roosevelt

I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

IMG_20150527_153117207 Remember when I said I was going to get through the winter  without using lights and my thermostat set as low as I could safely manage it?  Well, damnit, I did it.  And now, for further fun and self-flagellation, I’m attempting to go all summer without putting the A/C unit in the window.  It was 82 degrees in my house yesterday.

It all involves very little clothing, drapes closed, and a big fan.

I have a pleasantly cool, finished basement where my two new kitties and I can escape (Almanzo never returned, and I waited until my heart was ready to take in another animal companion).  The cats are 3 years old and had been surrendered at the Mohawk-Hudson Humane Society a week before.  I didn’t really want two, but they are sisters and I didn’t want to separate them.  I’ve named them Laura Bess and Gracie – after guess who?

They are very nearly identical….white with graffiti-sprayed gray atop their heads.  I put a collar on Gracie just to tell them apart, though Gracie’s bigger and usually now I can tell who is who.

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Laura Ingalls Wilder was a little thing, after all — just 4’11”.

And what of Boo?  He is himself.  He is navigating his world the best he can, and we along with him.  A sudden, explosive outburst at his father – when Andy told me on the phone, I nearly threw up.   Jonah attacking him, causing scratches, bruises, bleeding.  Chunks of hair pulled out.   I wasn’t there and I don’t even know exactly what happened, but I’ve seen it all enough to imagine…

…and I don’t want to imagine and I never want to have that happen to anyone again and there isn’t a damn thing any of us can do about it.

I spend a lot of time in the woods.  A lot of time alone.

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I remain afraid of my son.  I’d love to watch him swim, watch him sleep again.  I never get to watch him sleep.  Strange, the pieces of my mama-life I miss the most.  Small memories.  Momentpieces.

Everything is as it is.  I am beginning a meditation practice with Tim, daily, though he is in Indiana and I here.  I have lost my practice and need to regain the refreshing supply of mindfulness which comes from sitting in silence and outside of time.   Most recently we visited for nearly 2 1/2 weeks together both in Bloomington, Indiana (where he lives) and San Diego, California (where he is from, and where we stayed – where I got to meet his mom and her husband, Chris).  Here are some photos, of us — and of course, of Boo.

Love on the Pacific Coast

Love on the Pacific Coast

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putting on his socks and shoes

putting on his socks and shoes

happy on car-ride

And much silliness:

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“The best things in life are silly.”

~ Scott Adams

As is sometimes the case in the Capital District region of New York, it seems this year we’ve lept from winter to summer and are now slipping back to an uneasy spring, tulips & daffodils here and gone already.

Jonah doesn’t seem to mind what temperature the world throws at him, though maybe it would be worth noting if his aggressions happen more on days with certain weather.  He was so aggressive one day recently, ripping another child’s shirt during one of his tantrums/attacks/insert phrase of choice.   I frantically researched the web like I did when Jonah was first diagnosed with autism.  Then I texted an old doctor friend who called me 8 minutes later and listened to me.  He listened to me a lot and then he spoke a little and when I hung up, I felt calm.

Doc on the phone reminded me of many things.  That I have done the best possible thing for my child: placed him in the hands of the people who are learning the latest empirically tested teaching tools and medications for autism…and for Jonah’s kind of autism.  I know I need to stop panicking every time he has a Very Bad Day, and then not doing much of anything at all about it the rest of the time.  I ask myself what I should be doing about it.  I wonder if there is anything to do, anymore.

I did, however, also find in my research a new expression/phrase/diagnosis for what I believe Jonah has:  Explosive Aggressive Autism.  Trouble is, everything they postulate about EAA includes suggestions for steps we’ve taken years ago:  residential placement and treatment.  Risperdal.  Prozac.

Jonah has had 3 or 4 good days in a row now, including on Saturday when my mom and I drove down to see him.  He was happy, smiley, and about as calm as he gets.  Andy as always is the best daddy Jonah could want, always taking Jonah out for a visit, often overnight, any time he can.

The cool news is that I received a letter from the Anderson Center for Autism to announce they’d chosen Jonah’s artwork for an exhibit at the Ulster County Bank in Redhook, NY.  Here’s photographic evidence of said accomplishment:

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Mooncat by J. Russell Krebs, budding artist

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Proud mama comes in from the pouring rain and poses like a drowned purple cat beneath Jonah’s picture, thanking God and little baby Jason that Jonah himself has not been invited to the reception soiree.  I enjoyed coffee and cake, thanked the people at the bank, and hung out for a short while.

Jonah will never be in a school spelling bee.  He won’t be in the chorus of a high school musical, and he can’t run track, strong and windstorm-fast, to maybe even break a record.  Jonah will never have an award because his baseball team came in 2nd place in little league.  He won’t graduate from a “high school” – and his own yearbook, when he turns 21, will contain phrases that will make some people cringe.  Jonah has worked hard this year to complete his in-residence training and is excited to move into his new room at High Horizons, where he will ride the bus every day and work independently as a bagger at Stop ‘N’ Shop. 

That’s best case scenario.  More likely it will be a far simpler statement:

Jonah Krebs hopes to rule the world through violent intimidation.

I am laughing so I don’t cry.

I cry anyway.

I want to blog more, here or on the “new” site I never quite set up, but I’m working part time doing social media management, website copy, fundraising, etc. for nonprofits and other businesses, catch as catch can, and I’m busy.  Good-busy.  Helping others busy.  It seems to be something I can do and I’m getting along okay.

Here are some photos of the artist himself:

jonah and his bearclaw

 

 

 

 

 

 

…getting away with clapping his hands on a treat.

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Happy on a car ride…

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Sweet nature kid, wearing his purple peace shirt I made him.

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…and one of my paintings on a rock near a stream
where the artist dives in, swimming
and his mama comes to dream…

puck

“Up & down, up & down,
I will lead them up & down…”

~ Puck
Shakespeare’s Midsummer Night’s Dream

Would that it were a midsummer’s night!  Oh, how we upstate New Yorkers suffer when Spring officially arrives, because in reality She is always late here, and it all feels like some cruel joke.

Late March teases us with a day or two at 48 or 55 degrees; once in a while we’ll even get a 70 degree day (though not so this year).   Winter always manages to beat Spring back, dragging the season’s whole inevitable death scene out in a maudlin, uncouth fashion of day after day in the windy teens, the grey-skied twenties, the only-tolerable thirties.  I remember three damn different April Fool’s Day snowstorms in the last decade or so.

Enough is enough.  I want to go outside and feel warmth, see some green pushing its way up through sun-softened soil.

Jonah doesn’t care much.  He’s uncomplaining about cold or hot, except when it comes to his bath; like his mama, he wants the water at a temperature most people would consider near-scalding.  Mom and I visited Sunday this week, and Jonah was cute and good and funny.  We’re trying to teach him that he’s a different age now.

“How old are you, Jonah?” one of us will ask.

Using the language only people used to him can understand, he answers:  Um-twelll-yee-ol.

He never just says the number.  Always he adds “years old” to the end.

“No, silly,” I say.  “You had a birthday!  How old are you now?”

Evidently 13 is much easier for him to say because plain as day he answers, “thirteen.”  And without adding the “years old” part.

So much for always and never.

Jonah is Puck, leading us up and down through his challenging, “changeling” behaviours.  He has been attacking at school.  He has been fine at school.  He has been aggressing at his residence.  He has been good at the residence.   Tick, tock.  Yin, yang.  Up & down.

Is it puberty?

Regular teenager outbursts, “on steroids” because of his autism?

Questions.

How many angels can dance on the head of a pin?

Why does no one realize that the Alphabet Song, Baa Baa Black Sheep, and Twinkle, Twinkle Little Star have the same tune?

Can you be a closet claustrophobic?

How many licks does it take to get to the middle of a Tootsie Pop?
(The world may never know.)

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Digging his car ride.  I watched with pride as he dressed himself after bath time and deftly pulled on his coat, put on his hood, and zipped up.  Then I thought about how very strange it is to be so happy my 13-year-old boy can do something most 5-year-olds can do.  This strangeness will always be inside me, watching Jonah’s progress at its terrapin pace.

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He asks for “train on computer” and needs help getting the computer on and surfing over to You Tube, but once he’s there he’s getting better at selecting different videos on his own.  And when he can’t figure something out he’s super-excellent at asking for help:  I want help please? in his cute little voice.

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My handsome, capricious teenager.

I started working on a new blog.  Here’s a first glimpse.  I’ll be adding actual content, soonish, and I’ll continue to blog here as well.

My mom and I have been switching the days we drive down to visit Boo from Saturday to Sunday, based on Andy’s work schedule, which is fine except it sure doesn’t help me remember what day it is.

This past Saturday we’d planned to celebrate Jonah’s 13th birthday.  I bought him a few little things (flash cards and small fidget toys) and my mom got him big helium balloons and a chocolate cupcake-cake with a singing candle.  We left the cupcakes in the car so Boo wouldn’t go straight for them without eating his lunch.

I was tummysick but pushed through (bad choice of words, Amy) and we arrived unscathed.  We opened the door to see Jonah coming in the room on daddy’s shoulders, piggyback, all smiles in his pajamas.  He’d slept at Andy’s the night before.  I don’t know how Andy accomplishes overnights with Jonah, but he does – and I have to give him a whole ton of credit for it.

Pretty early on in our visit Jonah attacked me, snatching and mangling my glasses, yanking a fistful of hair, clawing at my face — with no warning, for no reason.   It’s been a while since he came at me like that.  Andy managed him in the bedroom while I wrangled my pliable glasses and tangled hair back into shape.

I’m remembering it in shards.  Hard to articulate how it felt, what with me being sick on top of it, and Andy so tired, and my mom trying her best to thread us all together – to patch the pieces.

I remember helping Jonah with his bath, playing our kiss eye? & kiss lips? game gently, even though he had attacked me less than an hour ago.  He’d eaten a cupcake on the side of the tub and there were crumbs in the bath.  He allowed me to hang out while he splashed around in the almost-too-hot-but-that’s-the-way-he-loves-it water.

And when he was all done, I remember he wanted a piggy back ride out of the bathroom, wrapped in a towel.  Sorry, kiddo.  Mama’s not Wonder Woman.

I remember Jonah wanted my mother on his car ride, no mama, which was okay with me because then I could lie down.  And when they returned my mom went back out to the car to get Boo’s cupcake-cake and candle, and she brought it in to fix it for him, but Andy was keeping him quiet in his room after more aggressions.

Mom stood ready to light the candle, uncertain.  I watched, sick and disappointed — almost disinterested — from the couch.

All done?  All done?  Jonah cried, craning his neck around daddy to see his treats.

After a few minutes Andy let him leave his room, and my mother lit the candle, but she was the only one with heart enough to sing Happy Birthday to 13-year-old Jonah Russell Krebs.  Andy and I just kind of mumbled it.

But my mother always has heart enough to sing for Jonah.

“To tell you the truth, I’ve said it before
Tomorrow I start in a new direction
One last time these words from me
I’m never saying them again
and I shut the light
and listen as my watch unwinds…”

~ Guster, Come Downstairs and Say Hello

I started writing this blog with no real intention of using it as anything but a cathartic & necessary process.

Then people found it, and more people found it.  If it’s helped one person out there, this blog has been worth it.  Thank you, all of you who supported and encouraged me through my shitshow of life-pieces.

Jonah’s been well.  He’s got a great sense of humor with wonderful attempts at being sneaky, but he nearly always gives himself away, laughing aloud at his own inventive trick in the midst of its very execution.

Andy is his best buddy and the most amazing father around — more amazing than I can even comprehend or begin to explain.  I always knew he would be, though; even before I married him, I knew he would be, to any child.

My mom and I still see Boo on Saturdays or Sundays (depending on when Andy works) and he’s growing into a bright, happy, handsome boy with a lot of OCD and still some aggressions.  In my heart I know he is in the right place, and there is a humble hope there too that he’ll grow into a young man with some independence and a whole lot of happiness.

I want to find ways to contribute more to that happiness, maybe make him a music mix or two…talk to his teacher and residence head about his preferences.

Funny; they used to ask me.  It feels like it’s my own fault.  I could find more ways to try to insinuate my presence into his little life.  But he hates the visitor’s center (the on-campus place with really nice apartment-like settings for family visits) and there’s no “home base” for us nearby. They don’t allow visits to his own house, except to pick him up and drop him off.  Andy is kind enough to have my mom and I over once a week.  I could bring Jonah up to Albany, to this place – the house where he used to live.  He hasn’t been here since the day we brought him to Anderson.  We’ve made deliberate efforts to bring him no closer than the Stewart’s shop three blocks away.

I’m afraid to bring him here.

If he asked for home? or started to panic, cry/breakdown, it would damn near kill me.  And if he liked it here, I’d need help to watch over him.  I’d love for my boyfriend (who actually cares for individuals like Jonah) to live here and go with me to see Boo, but he lives 850 miles away.

He can’t leave his life there and I can’t leave mine.  And so we continue to visit when we are able — once every 4-6 weeks, which we happen to think is pretty damn good — and our love is strong and joyful despite such nonsense as physical distance.

Time is an *asterisk*, Tim knows (and I am learning).

We visited West Virginia in January & I learned to cross-country ski.

We visited West Virginia in January & I learned to cross-country ski.

Jonah’s going to be 13 on March 7th, and that’s awfully close to adulthood.

Some part of me thought he’d stay my little Boo.

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Because he’s so young inside, there’s something almost wrong about his body growing out of that innocence.  Those sweet, pre-school like curiosities and his uninhibited joys belong to a tiny little boy.  Jonah’s teenager-sized now.  It’s weird.

Valentine's Day Treats

Valentine’s Day Treats

The residents at Anderson stay until they’re 21, and then they enter whatever program and residence suits their abilities and independence level.  Sometimes it’s an adult residence much like his house now – and then the housing moves into more and more independent living situations.  I’m not so much worried about those possibilities as I am staring at them, as at a distant mountain’s terrain I know we’ve all got to climb, with time’s strange ticking toward our journey “up” that incline.

We guess.  Decisions about medications, therapies, music, motivation, behavior modifications.  I say autism’s a casino.  It’s dark inside no clocks no windows.  It’s random, and it’s messy, and you can hit it big – but mostly you keep going to the ATM, withdrawing more and more from your life your choices your options until all of it is gone and you’re walking out the door, blinking into the reality-light.  I say we’re in the infancy of understanding autism:  the diagnosis, treatment, identification of causes…the moral earthquake of words like cure.

Part of why I love Elizabeth Moon’s The Speed of Dark is how she approaches the topic of being ‘cured of autism.’  The bare honesty and objective approach surprised me; I’d assumed she’d be unable to break from a highly subjective viewpoint (her own son has autism).  But I was too quick to judge.  Her book kept me interested and engaged.  To me it’s an edification and an enchantment to see things from an altered angle, and this story was indeed from that kind of place – offering a glimpse into the thoughts and feelings of a man with autism (albeit high functioning) and why he is considering undergoing an experimental treatment to make him “normal.”

Still.

I feel like my time of talking about all of this is coming to an end.  A huge part of my life will always be about being Jonah’s mother.  I’d like, though, to write about other subjects and explore other journeys.  I’ll still update here, but I truly believe the most raw and helpful entries about Boo are from Fall 2010 – August 2011 (if you don’t want to feel alone or would just like to read what we went through).

Once I build my new blog, I’ll post it here.  Then I’ll continue to post here (perhaps once a month) and at the new blog as well.

One personal update: I was recently let go from Modest Needs because of a budget cut, and so I’m job hunting…exploring and considering many options.  The very ground is dancing with the buzz of uncertainty and choice.  I’m doing this, though.

Here’s a “Jonah’s Journey” of sorts, a collection of Jonah media for you to enjoy.  See you soon.

May empathy and understanding reign.

Jonah at the eye doctor.  He's knows the routine and is better behaved there than most adults.

Jonah at the eye doctor, January 2015. He’s knows the routine and is better behaved there than most adults.  His eyes look good!

Mama and her happy boo

Mama and her happy boo

Sporting his sweats and a smile

Sporting his sweats and a smile

Jonah in daddy's "big blue bed," sporting the "You Can Never Have Too Many Trains" t-shit his "aunt KP" for him for Christmas.

Jonah in daddy’s “big blue bed,” sporting the You Can Never Have Too Many Trains t-shit his “aunt KP” bought him for Christmas.

Happy, Handsome Boo

Happy, Handsome Boo

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