Out of the closet…….

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an 11 year old “sparking up” , let me assure it is nothing like that.
Jackson takes a dropperfull  of a non alcohol based tincture in the morning and a product called Rick Simpson oil (also known as “Phoenix tears”) in the evening.
Neither of these products have a psychotropic effect.
Let me repeat that:
They do NOT have a psychotropic effect.  That is to say: Jackson is NOT getting “stoned”.
There is no “head change”.

These are carefully crafted MEDICINES that have proved radical in Jackson’s treatment for his seizures, his TSC, and his joint pain.

The process is above board and on the up and up.
The dispensary where we choose to purchase Jack’s medicine is safe, friendly and……INCREDIBLY KNOWLEDGABLE about their products.

We live in Humboldt County which is widely regarded as the stoner capital/pot growing mecca of the United States.   However, we are not alone in the medical marijuana movement.

Check out what is happening in Colorado- with the Realm of Caring – and their specially crafted strain known as “Charlotte’s Web” that is showing amazing progress in the treatment of seizures.

Georgia is next.
Fingers crossed.
Check out what is happening there through Connor and his mommy

It’s happening, people.
It’s slowly happening, but it IS happening, and lives are being saved and being made BETTER with the use of medical marijuana.
I’ve seen it.
I’ve felt it.
And I stand solidly behind those that are fighting for the legalization of medical use of the cannabis plant.

Still with me?
Does it change the way you see Captain Jacktastic?
Are you appalled?  Surprised?

We are still who we are.
And we continue to fight the good fight.

Poetry readings

Poetry has always had a high priority in my reading life. In my teens I discovered major poets and also some that were rather obscure. I read with a thirst.  Words came alive to me.  Some poems,  like Burroughs’ Waiting have stayed with me since my first discovery in my teens.  I often reread it and find more to it.  More depth. And an even stronger connection to it.
I have passed this poem on to my daughter too– hoping that it will resonate with her.

Ah.  My 13-year-old daughter.  An exquisite creature who is off beat, and takes life on her own terms.
If poetry was humanized, SHE would be free verse, spoken word.  Vital.  Vibrant.  Off in all kinds of directions.

But THIS is a blog about Jack, isn’t it?

Jack who I lay next to each night as he falls asleep …….
Once Jack falls asleep, I text my husband to let him know all is well in the back bedroom and I will be out shortly.
About a week ago, in a playful mood, I decided to write a haiku rather than texting:
“Boy asleep, out in a mo”
A haiku.
5-7-5 syllable structure
It went

Softly sounds of sleep
Permeate the dark room
Jack at peace for now

I was quite pleased with my cleverness.
And so the next night I repeated the idea:

The boy snores soundly
Exhausted from being Jack
The good kind of tired

And so, being a dork, I decided to finish out the week the same way
(I am NOTHING if not a creature of habit!)

The boy sound asleep
Dreams of things that we cannot
Sleep sweet dreams, Jackson

He speaks of his day
The trees,the spinnings,  daddy
His mind is a book.

The boy falls asleep
Without a sound or a fuss
Dreams of Darrah’s room.

Daddy’s arms are strong
The best place to fall asleep
Jackson loves Daddy

Then last night, it hit me…….
Jackson IS haiku.

Jackson is haiku
He is a steady rhythm
Compactness of words

Jackson IS haiku
he’s juxtaposed elements
spare and raw beauty

Jackson IS haiku
he’s deceptively simple
yet years to master

Ask any parent of a special needs child:
There is poetry in their very existence.
Sometimes it’s Ginsberg’s HOWL.
Sometimes it’s the very structured iambic pentameter of Shakespeare.
Sometimes it’s the be-bop cool of Langston Hughes.
And sometimes it’s all their own- defying any box or parameters.

I invite you to keep your eyes, ears and heart open for the random poetry readings that may occur in your life.

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You can’t always get what you want

When I first met Jackson, he was non verbal.
Completely.

If he wanted a drink, he would make a noise mimicking sucking a straw.
He and Clay would communicate with clicks.

There was laughter.  Smiles.  Noises,  But no real verbal communication

One day at a picnic, he busted out a “Hi, Jelena” to his respite worker.

We celebrated.
It was awesome.
And with prompts he would repeat that greeting with someone else’s name.

It was a breakthrough.  And I would be lying if I said that it was a piece of cake from then on.
There was echolalia that we have been able to direct to real life situations and use.
There has been nonsensical babble that we have been able to suss out a few words and BAM another breakthrough.
There has been times when Jackson repeats a word over and over  that we cannot make out….and then when we DO figure it out- he grins and laughs and VOILA!! another addition to the vocabulary.
And when he makes that connection? Boy do we honor it!
Chips please?!
We respond with “Yes chips! I get chips.”
Or “I want some water” (to play with , not drink!) “Yes Jackson, I get you some water.”

Jackson spoke and we honored it.  Jackson requested and we JUMPED!
Jackson made his desires known, we leapt at the chance to let him know:
COMMUNICATION WAS WORKING!

One beautiful night, Jackson grabbed Clay by the shirt sleeve and brought him to the window.
He said, “Daddy, I see the moon.”

Moments like that you don’t soon forget and are incredibly awesome.
It’s all wonderful, isn’t it?

Heres where I become Debbie Downer.
Nope.  It’s NOT all good.

Because at some point you have to introduce the word
NO.

And when you do…….it’s heartbreaking.

Suddenly the world becomes a much sadder place.

You cannot ONLY eat chips all day.
You cannot always play with water cups on the counter.
You cannot always get what you want.

With some of these requests, we have instructed Jack to be more pro-active
J: “I getta fan on!”
Us: “Jackson turns the fan on”

J:”ELMO BALLOON!”
Us: “Jackson get the Elmo Balloon”

J:”Spinning, please!”
Us:”Jackson gets a spinning”

And so on and so forth.
Sometimes Jackson gets that ok…..I’ll get my stuff.  Although, he would much rather sit in his chair (throne) and be waited on.
And then other times we have to work hard to get him involved– A prime example being his love of chips.  He will want chips and so we draw it out so that he does not just become a chip eating machine.
It goes like this:
Jackson : “Chips please!”
Us: “Yes, Jackson, I get you chips!  Where’s your bowl?”
Jackson: “Yes, chips!”
Us:” Let’s finder the bowl”
Jackson: “take it to the counter!!”
Us: “Finder the bowl, take it to the counter!”
Jackson: “whine whine whine”
Us: “Good job, Jackson!! Take your bowl to the counter!”
Jackson: “Yes chips!”

and so it goes…..on and on and on.

Communication is hard work.

And while you can’t always get what you want,
Jackson finds that you also get what you need:
Boundaries with love.

 

Baby Love

One of the coolest things about Jack is watching him around other kids.
He doesn’t always want to play. In true autism fashion, he likes to WATCH the kids play.
He will delight in them running AROUND him.
He will laugh hysterically when they play tag or jump on his bounce-poline.
He will even make sure WE see– “I see those kids, daddy.  I see those kids.”

But even knowing he felt this way about KIDS– we got a beautiful and tremendous surprise the other day when a friend brought over her newborn.

Baby Lavelle is about two weeks old and just under 10 pounds.
From the moment his mama brought him into our home, Jackson was entranced.
EN-TRANCED.
He was beside himself with Joy and Delight at this small creature.
He kept pulling on his mama to sit down with the baby “Sit with you? sit with you?”
He sat next to me while I held the baby.  He wanted a blanket and a pillow.  He graciously tried to put his own blanket on the baby.  He beamed.
He would look at us and say “baby.  baby.”
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He loved the nearness of the baby.
He tried to smell the baby.
He was not distraught when the baby fussed and cried.
He was gentle.  He was loving.
He full of joy and wonder at this tiny creature.

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Ah, Jackson.  Seeing once again the joy in small things– literally and figuratively.
Busting the myth that autistic children are devoid of emotions.

Jack babbled to the baby. ALOT.
I’d give all that I have and more to know WHAT he was saying or thinking.
Was he giving advice?
Was he welcoming a fellow being to the planet?
Was he telling the baby of all the joys this world has to offer?

The cynics would say that he was just mimicking adults talking to the baby.

Thankfully, I am NOT a cynic.

 

Fuck you, Autism.

This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately.  What to write, oh what to write…..?
I would start things….but not finish.  I would have great ideas, but no way to wrap it up neatly.
This was bugging me.

Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album.  There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager.  It was delightful.

Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.

But this picture was different.  It showed a very composed, calm child with a look of peace in his face.  I was moved by the colors, the composition, and the expression on his face.

It was THIS picture:
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Just look at him.
LOOK.
What do YOU see?

I see a blank canvas upon which a masterpiece could be painted.  A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.

Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait.  is that ECRU?  I thought it would be more beige.”
No.
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.

And for that I say:
FUCK YOU AUTISM.  Fuck you and the horse you rode in on.

Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!

Fuck you and all that you stand for.

So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.

Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.

Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe.  Mainstream.
Jackson is not  paint by numbers .  He defies realism and a conventional palette.

He is cubism.  He is a Dali. He is a Pollock.   He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful.  He is art as a verb.

He is the Venus de Milo– still beautiful if not what the artist originally intended.

And listen, I may not know much about art.
But I know what I like.

And Jack is– and will always be — a thing of beauty to me.

 

So here’s to us– the  curators of outsider art– or autism parents.
We see the world differently.
We have to.

Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.

 

 

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Terms of……..endearment

Facebook has a power.
It lets us stalk.  It lets us get in touch with our past.
And it reminds  us– in some cases– who we were.  And maybe…..still are.

I am a graduate of Hunterdon Central High School in Flemington, NJ– Class of 1982.
Unlike many people– high school was a haven for me.  It was a blissful place where I could be who I was.
I was a geeky, weird theater person with a hunger for books and a longing for something “more”.
We had a very large theater department.  AND believe it or not– a community radio station.  It was there, in my freshman year, that I met a graduating senior by the name of Jeff McQuinn.  Long haired hippie stoner dude with a killer smile and a gentle spirit.
My friend Sandy had a hella crush on him.  She refered to him as “Jeffie” McQuinn.
What I remember most about him is a story he once told about playing darts in a bar.  In order to psyche out his opponent, he stuck his darts in his artificial leg.  That story reverberated with me then and now.   It’s a touchstone for me– a “f*&K you, I’m stronger than you think I am.  I’ve got this “thing”” but it doesn’t bother me”.
Embracing a perceived weakness as a strength.

oh.  wait. Did I forget to mention that Jeff had an artificial leg?
Yeah.
He did.

He recently came across my Facebook radar and I told him about  always remembering that story.  And we chatted about this blog and where life leads us.
He discussed how his handicap……

woah woah woah…..wait.  Hold on a minute.
I had to stop.
Handicap? Disability?
What? I’m talking about Jeff McQuinn! He doesn’t have a “HANDICAP”!!  He’s not “disabled”!!

oh wait.  He only has one leg. I guess he does.

Seriously.  I had to pull myself up short.
It never occurred to me.  He was just Jeff: Long haired hippie stoner dude with a killer smile and a gentle spirit.

I am long past thinking of people in terms of handicapped, disabled, autistic, neurotypical, cognitively aware, etc.

I realize that I think of people in terms of……..
people.

Who they are.  What they do.  What they bring to the table.

Perhaps I am being a tad insensitive.  Perhaps you think I am making light of those that struggle with a physical disability.
But I assure you, I am not.
I don’t like to define people at all.

You ask me which child is mine in Pat’s class.
Do I say: “He’s the autistic child with tumors in his brain and epilepsy”?
No, I would tell you that he’s the blue eyed, dark hair boy with the sly grin and great laugh.
You ask me who was Jeff McQuinn in high school.
Do I say: “He was the guy with one leg”?
No, I would say he was that long haired guy Sandy had the crush on.

The next time that you have to describe somebody to another person– listen closely to your language.
Think in terms of their heart, in terms of their deeds, in terms of their worth.
The terms autistic, disabled, handicapped, cognitively impaired , etc DO have their place.
But so do the terms
sweet, kind, talented, righteous, courageous, blue eyed, freckled, funny, etc etc.

Think in terms of  endearment.

An open letter……..

As alot of you know…..we have just returned from a two week vacation where we traveled to Idaho and Utah to visit family.  It was lovely.   Jackson traveled very well. (with ALOT of pre-planning on our part!)

One of the highlights was visiting the Hill Aerospace MuseumImage

THIS, is an open letter to the woman that openly stopped and stared at Jackson at one point in our visit there.

Hello.
I understand that you might have been a little put off or uncomfortable with what you witnessed   at the Hill Air Force Air Museum.
Let me break it down for you so that you can put it in perspective.
My son , Jack, is autistic.
Jack loves, and I mean LOVES, helicopters and airplanes.  They are endlessly fascinating to him on many levels.  So that day he had reached Nirvana, Vallhalla, and Heaven all rolled into one.  It was bonus points that the hangar was cool and not brightly lit.  That echo?  A big draw, too!

And that cool ( to the touch) concrete floor was the coup de gras on that hot summer day.
He laid down on the floor so that he could see the propellers from his favorite angle:
LOOKING UP.

And that is why he yelled (at the top of his lungs) the word FAN.
What he did next was a sensory thing.  The floor was cool and slick and perfect to push oneself across on one’s back.  If YOU were a severely autistic child, YOU probably would have done the same thing.
Really.
You would have.
And it would have felt AWESOME!
Jackson, at that moment, was deliriously happy.

Now, my 13 year old self really wanted to say to you in a snippy voice:
“take a picture, it’ll last longer”

The grown woman/mother in me really would have liked you to have at least try to catch my eye.  Perhaps smile.  Maybe raise an eyebrow.  Even ask, “Is he ok?”

But no.
You openly stared.
You stood there.  You frowned.
You stared.

I thought about offering up the phrase “He’s autistic” as a way of explanation.
But decided against it.

You were closed.
You were not open to any information as far as I could tell.
You turned smartly on your heel and walked away.
My guess is that when you went home Jack and I became a dinner table story.  A cautionary tale- perhaps a narration of bad parenting.

And you know what?  It’s OK.  It really is.
Because Jack and I know the truth– and we had a really great time.

Through Jack’s eyes……

I recently posted a picture of me on FaceBook.
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That’s me.
49 years old.
No make-up.  Waist length hair in braids.  A hat.
Relaxed.

In all my Facebook picture posting history, I don’t think I ever received as many likes and compliments as I did for that picture.

It’s funny to me how life’s experiences can brainwash you.
My entire life– through my family’s eyes– my pale skin has always been a detriment.
My childhood nickname was Caspar. THEY tan just by walking by a window on a sunny day.
Make-up was always pushed upon me.  As a matter of fact, my mother suggested I start wearing lipstick in FIFTH GRADE.  She lectured me that if I had color on my lips, then I wouldn’t look so sickly.  And so the school nurse would finally stop asking if I felt well.

But as years have gone by I have lessened the amount of make-up I wore–slowly but surely.
Today I can get my whole face on in less than two minutes:
Cover up under my eyes and a few spots on my cheeks.
Translucent powder to set.
AND- of course-
lipstick

(mac Verve
I have been wearing that shade for almost a decade.  No deviation.  It works.
Should mac ever decide to discontinue that shade, I’m gonna buy out all I can find!)

But looooooong gone are the days of monochromatic eye shadow schemes to match every outfit.
Of owning a make-up bag the size of a duffel bag.
Of changing my  make up look from day to night.

And I think about WHY.
What happened to me that all of THAT went by the wayside?

Well.  Time for one.
Who has time for getting THAT kind of face on before heading out the door?
And money.  My tastes run towards mac, Christian Dior, and Bobby Brown.  That stuff ain’t cheap by ANY stretch of the imagination .

And lastly…… I started being OK with who I was.  Little by little as each procedure of make-up fell away, I began looking at myself and thinking:
“Yeah.  I look all right”
What I have held onto– my pale skin and dark lips– has become what I define as “my style”.
And I embrace what was once undesirable.

BUT– this blog is- as always– about Jack.

If you will pardon my language, Jackson could give a rats behind whether or not my skin tone is even.
I don’t think he has ever judged me on whether or not my cheeks are perfectly sculpted.
And I am pretty sure he does not have an opinion whether or not my eyes are smokey or defined.

Jack cares that I am consistent.
Jack cares that I am kind.
Jack cares that I smile at him.
Jack cares that he can count on me.

My look, my perfume, my wardrobe are all inconsequential.
My actions, my intent, my love is all that matters.

And THAT my friends, is a pretty good way to look at others.

Another Dad’s Perspective

If you know me, then you know I take pride in the fact that I am a geek.
And to that end, my husband and I are big fans of THE NERDIST.

Imagine our surprise one night when we watched an episode that included a comedian that discussed………HIS AUTISTIC SON

We sat there.  We laughed.  We got it.
Then I immediately hit the internet for any other information I coud find on him.
What I found was a man that was thoughtful, friendly, and wickedly funny.

So being the straight forward agressive Jersey girl that I am, I asked him if he would consider being a guest blogger for me.
To my everlasting astonishment and delight, he said yes.

Ladies and gentlemen, I am pleased to present to you the one, the only,
Mr. Ron Funches……..

I remember the day my son Malcolm was diagnosed with autism. His mother and I had spent the better part of the first two years of his life wondering if it was normal for a baby to sleep three hours a day while spending the rest of his day rewinding his favorite sentence oh his Jungle Book DVD. There was a period of time where I assumed he was deaf, as calling his name would lead to blank stares and dropping a phone book behind him would illicit no reaction. But how could that be when singing the Elmo’s World theme song would cause his head to whip around and a huge smile to come on his face? We had no idea what was wrong and that is the scariest thing that I believe can happen to a parent, knowing something is wrong and having no clue what it could be.

Autism wasn’t even a word in my vocabulary. When my mother suggested we have him screened for it I lashed out. I said there was nothing wrong with him and he was just a weird kid just like his father.  I was afraid that my son would spend his formative years in special-ed classes.  I remember them from my high school- tucked away as to not offend the so called normal students. Let out after we finished our lunches to clean up after us and learn so called “life skills”.

I didn’t want that for my son.

I thought Malcolm’s Autism Diagnosis was the end of the world. My son would never go to college, never become a All-Star NBA player, maybe never even move out of his parents home. I was also told things he may never do. Talk, go to the bathroom by himself, get himself dressed. I fell into a depression.

Till one visit to a local playground changed everything. Our visits to the park looked a little different than most. The two adults circling the perimeter of the playground knowing that our son was prone to take off running into the streets at any given moment. I remember the stares from the other parents and the “why don’t you just relax and let him play” comments from people not knowing if I did sit for 5 minutes odds are he would be two towns away before I even noticed. This day was different. The park was empty except for a group of disabled adults and their caretakers across the field. That day is etched in my memory and has motivated every career decision I make. I am sure there are great, empathetic, caring, caretakers in the world, probably a bunch, but these were not them. They way they yelled at them, the way they mocked the noises the disabled adults made. You know the noise. the one everyone makes when they pretend to be retarded (please stop doing that). The way they treated them more like pets than human beings who deserve respect. I knew that day I needed to make a lot of money. Enough so that when I die and his mother die that he would never have to see one of these facilities. That was the day I knew I either had to go back to college or follow a dormant dream I had. If it wasn’t for those mean people I don’t think I would have pursued comedy with the determination and effort that I have. I  was shown a possible future that I wanted no part of for my son and I continue to work hard to make sure it never happens. So if you see me shilling some product in a commercial I don’t care about, you know why.

The best lessons I’ve received in life have been due to my son. Not setting expectations, but never giving up, knowing anything is possible. Being yourself no matter what. After years of therapy Malcolm is now quick to say  “ I love you” or “ Bacon and Bread sandwich at Subway” or “What da fuck” all at appropriate times. He now wouldn’t be caught dead in the same bathroom as his dad and besides some trouble with his skinny jeans can generally dress himself. He is my best friend. He’s my Apple Jack and I’m his Cinna mon. He taught me and continues to teach me so much. How talking is overrated, how  so many things in this world don’t  make sense if you look at it from a different angle.

I am blessed to know him. He woke me up and set me on the right path.

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Thank you sir for your words and your perspective.
And that is one handsome guy you got there.
Takes after his dad, huh?

 

 

Earthquakes and other tremors

Yesterday morning I was sitting right where I am now.
I was sipping my first cup of coffee in 6 days (thank you post op), enjoying its rich warmth.
The sun was shining.
My husband and daughter were en route to a track meet.
Jackson was enjoying his morning combo of cereals and Elmo on the couch.

Ah.  All is right in the world, right?

Then the earth shook.  Literally.
It was one of those low rumbling quakes that feels like there is more coming ……
but it didn’t.
When it started, I ran right to Jack and waited.
Jackson? Well.  He seemed pretty non plussed.

I sat there with him for a few moments.  And waited.   Then waited some more.
If you have ever experienced any type of earth quake, then you know it leaves you feeling…
Vulnerable.

A few deeps breaths, the realization that THAT was it.

And then back to our regularly scheduled day.

Clay and Darrah?  They didn’t even feel it.  Other friends on Facebook? A few random posts here and there.
In the great grand grand scheme of things, it wasn’t that big of a deal.
Just one of Mother Earth shakers, relieving some deep seated tension.

The rest of our day progressed nicely, if not lazily.

Nicely till the evening, that is.

Early evening Jack started getting moody.  Cranky. He was making demands.  He was throwing things.  He was trying to bang his head.
He was not using his words.  He was frustrated (WE were frustrated) .  Nothing seemed to placate him.

Finally, we urged him to start his night time routine a bit early
(in the chair with Daddy under his favorite blanket)

So, allright. *deep breath*  He settles in a bit.  He was tired, we reasoned.  Big day walking around his sisters track meet.

Then, we see it.
If you don’t know what to look for, you might just think he was thinking about something he liked.
He smiled.
A big, crooked grin.
Or, as we in the epilepsy biz call it : the ictal smile.

It didn’t last too long.  It also included a few head nods, a blank look.
But 5 seconds can seem like 5 minutes when you are waiting it out.

It passed.  His body relaxed.  He snuggled in to Clay.
Clay asked: “Hey, buddy, did you have a seizure?”
Jackson replied, “seizure”.

We sat there with him for a few moments.  And waited.   Then waited some more.
If you have ever experienced any type of seizure, then you know it leaves you feeling…
Vulnerable.

A few deeps breaths, the realization that THAT was it.

Jackson’s mood returned to normal.  He was not wore out like other seizures.
He played with his sheep, he laughed.  He asked for things.

And then back to our regularly scheduled night.

In the great grand grand scheme of things, it wasn’t that big of a deal.
Just one of Jack’s  smaller quakes, possibly relieving some deep seated tension.