Real.

Real.

Ask any autism parent and they will tell you:
when their kid gets fixated on a toy- that’s it.
You better have a back up.
You better not lose it.
You better be able to produce it out of thin air when needed.

In our household there are several standbys that are always handy-
Slinkys, Legos, phone cords, spinnings and books.
And now we can add a new one.
Jackson has decided he has a new favorite toy.  He pokes it, he prods it, he pats it, and he delights in it.  He throws Legos at it.  He laughs at it, and he cuddles with it.

The toy?
Me.

Jackson will request:
“Tina sit with you?”

And so I do.

He will bounce up and down.
He pull up his blanket so it covers us both.
Then?

Then the fun begins.
He will poke my eye and smile.
He will pull on my chin so I am face to face with him.
He will burp on purpose so that I will make a face.
He will pull on my braids and laugh and I make a face.
He will wrap his hand around my necklace and repeat “Tina necklace” over and over.
He will put his arm around my neck and smile broadly at me.
Sometimes we even sing together.

And on it goes– for as long as I will let it.
And how long will I let it?

For as long as Jackson needs it.
For as long as Jackson desires my presence.
For as long as Jackson.

Because THIS toy will not get lost.
THIS toy will not mysteriously disappear.
THIS toy is built to last.

THIS toy is real.

 

“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”

“Does it hurt?” asked the Rabbit.

“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”
Margery Williams, The Velveteen Rabbit

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisements

Falling for the boy

Well crap.

Jackson took a fall and broke a toe.

We thought he was running for a split second.  Until we realized that he was falling.  And then neither of us could get to him in time.  It was that super slow motion thing that makes you realize how quickly things can change.

Pavement 1, Jackson 0.

He’s got some lovely road rash to show for it too.

But I have to say:
Our little man is a trooper to be sure.  He doesn’t let much get him down.
My husband tells me that right after his brain surgery at 5 years of age, he tried to get up and indicated he wanted home.

Even as we assisted Jack in walking right after the fall he would look at us plaintively and say: Fix it? Tina! Fix it.

*heart broken*
Sorry, buddy, Tina can’t fix it.

But here we are five days past.  We’ve been to a doctor, we’ve been xrayed, and we are on our way to recovery.

Jack is once again, teaching me a good lesson.
He is same as he ever was.
And while I have had to give up a some (ok- ALOT) of sewing time to help him.
And I am not getting as much housework done as I could be on this break……

I am spending more time just hanging with the boy.
Talking.
Communicating.
Learning new things. (not to mention, fetching and waiting on Jack ‘s every whim and will.  🙂   )

And who cares if my sewing room remains in disarray?
Who cares if my floor is a little “crunchy”?
Who cares if that stack of sewing projects sits for a bit?
This is the here.
This is the now.
And sometimes you need a reminder that you need to put your feet up
(especially the one with the broken toe)
and be at one with the world around you.

Thank you Zen Master Jackson.

photo 2 (2)

Effortless Doing

Maybe I haven’t made this clear to you:
I love Jack.
I love Jack differently than I have ever loved anyone or anything before.
I can see you shaking your head…..”well, DUH!” you are saying to yourself, “of course!”

But

it’s not that simple.

This is not to say that I love Jack BETTER than I love anyone else.
I have a daughter that I gave birth to and she gave me purpose in life.  She healed my wounded heart just by her presence and who she is becoming.  She is her own creature.  She is beautiful.  She is compassionate.  She is kind,  She is fierce.  OH! Sure, she can be a pill and then some.  After all, she IS 12 and adolescence is not easy on ANYone involved.

But Jack……we have a different relationship.  Yes.  I take on the Mama role.  Yes, I AM a caretaker, nursemaid, autism whisperer, respite worker,  behaviorist and one on one aid all rolled into one.

But here is something else I am:
STUDENT.

Make no doubt about it.
Jack is my little zen master.
I have a tendency to barrel through life.  I am ever fueled by caffeine buzzing at a high frequency, trying to get 12 hours of work, cleaning, crafting, family time, etc into 8 hours time.  Sleep?  THAT’S for ametuers.  There is STUFF to be done! Let’s go! Multi-task! Chop Chop!! Mach Schnell! GO GO GO!!

And while people are amazed at what I get done…. I lose a lot.  The daily nuances of life.  The tightening of jelly jar lid.   The shutting of cabinets.  The details.

Jack has helped me to amend my ways.
To get me to slow down and be on Jack time.
Jack doesn’t stress about time.
Time is not a Jack construct.  You want to spend four hours standing at the fence taking apart a giant fuzzball to watch the tiny pieces of fuzz blow away in the wind in a random pattern?  Go for it.
All you have to do is breathe.

So.  I stop and I sit with Jack.  I LOOK at what he is looking at.  I try to see it as he does.
And you know, often times I am surprised by what I see……. A shadow.  A line.  A cloud formation.  The sky.
Have any of you really REALLY looked at the sky lately?  AND took it in with awe and innocence?
I highly recommend it.
You could argue that Jack has the luxury of this because of his “situation”– the brain damage,  the autism, the TSC.
And you would be correct.
But you would also be wrong.
Because Jack does too have a choice.
And Jack embraces that beauty.
Jack finds that joy.
Jack has mastered the art of  effortless being.

In the Tao of Pooh, while I run around being a bit of Rabbit (too busy, too thinking) and Clay represents Owl (knowledge is all)
Jack is our Pooh.
He is.
Rather, he IS.

And that is where my love for Jack differs from anyone else I have ever loved.
Jacks love is who he is.
It is his smile given.

It just is.  
He has no hidden agenda, no pretenses.
He is who he is.  And who he is pretty darn easy to love.

(deep breath in aaaaaaaaaaaaaaaaaaaand out)  ❤