The world goes on……

Let’s talk about anger.
Let’s talk about how angry and pissed one can get at the world, at life, at God, at fate, at any and all things because you’ve been dealt a lousy hand.

I see things differently now because of Jack.
I’ve seen his body wracked by seizures that were unstoppable no matter how many meds he got–seizures that got him life flighted and landed in ICU.

The world is going on around you and you want to SCREAM — Hey God! SOMEONE! ANYONE!
Look at this poor child and what he is going through!
STOP EVERYTHING and take care of it.

But it doesn’t stop.
It subsides.
The world goes on around you and somehow you slowly make YOUR way back into it.  Standing in line at the grocery store.  Brushing your teeth. Driving to work…..

You want to shake people by the shoulders……”look, you don’t need to get so pissed off that there are two more people in line at the express checkout! ITS NOT THAT IMPORTANT!”

I’ve held Jack while he has been in full blown status seizure, mindful of keeping him on the proper side, while his father tried to keep him with us, waiting for the ambulance to arrive.
I’ve been by his side in the ER while he is gone– keeping MY skin on HIS skin — trying to keep him tethered to us while doctors come in and out……asking more questions than giving answers- Jack’s father usually must guide them through the tried and true procedures.  We carry a laminated sheet and a bag of empty med bottles just for this purpose…..

But back to the anger.

Yeah.  I AM angry.  I am pissed.  I am indignant.
And it fuels me on.
To be a better person to those around me………Maybe others are dealing with similar issues and I cannot see it.
To give Jack the best life I possibly can…..to understand HIS world more rather than try to make him understand MINE.
To raise awareness of children like Jack to as many people as possible……..
To make compassion for ANY special needs brought to the forefront of our collective consciousness……

So yes.  I get angry.
But then ……….
I see this:
Jack making noises like the lawn mower. 
And it dissipates a little and I am reminded to
Stay in the moment.

 

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LIVING IN THE MOMENT

so…….. this morning was a cry fest.
and a GOOD cry fest at that.

Clay was given a most amazing gift from Molly.
Molly is my (ex but not really) stepson’s girl friend.
The first time she came to visit us about…..a year ago? she got that Jack LIVES IN THE MOMENT

And so from that…spawned this amazing creation.

First….. really look at these lyrics from Jason Mraz.
Think about Jack in this context……

Remember Jack…..
Jack is a ten  year old boy living with tuberous sclerosis, a seizure disorder, brain damage and autism.
He is a pure soul living in this strange world.

 

If this life is one acts
Why do we lay all these traps?
We put them right in our path
When we just wanna be free

I will not waste my days
Making up all kinds of ways
To worry about all the things
That will not happen to me

So I just let go of what I know I don’t know
And I know I’ll only do this by
Living in the moment
Living our life
Easy and breezy
With peace in my mind
With peace in my heart
Peace in my soul
Wherever I’m going, I’m already home
Living in the moment

I’m letting myself off the hook for things I’ve done
I let my past go past
And now I’m having more fun
I’m letting go of the thoughts
That do not make me strong
And I believe this way can be the same for everyone

And if I fall asleep
I know you’ll be the one who’ll always remind me
To live in the moment
To live my life
Easy and breezy
With peace in my mind
With peace in my heart
Got peace in my soul
Wherever I’m going, I’m already home

I can’t walk through life facing backwards
I have tried
I tried more than once to just make sure
And I was denied the future I’d been searching for
But I spun around and hurt no more
By living in the moment
Living my life
Easy and breezy
With peace in my mind
With peace in my heart
Got peace in my soul
Wherever I’m going, I’m already home

I’m living in the moment
I’m living my life
Just taking it easy
With peace in my mind
Got peace in my heart
Got peace in my soul
Oh, wherever I’m going, I’m already home

I’m living in the moment
I’m living my life
Oh, easy and breezy
With peace in my mind
Peace in my heart
Peace in my soul
Wherever I’m going, I’m already home
I’m living in the moment

THEN…..
watch this….
and please-  Have a box of Kleenex with you!

Merry day of Lots of people here

A  friend asked me if  Jack was excited about Christmas.

The answer? Nah.
After all,  how does one EXPLAIN Christmas to a child like Jack?

You really can’t.
And really, why SHOULD you?

I can tell you this:
Jack is excited about all the LIGHTS!
I capitalize it because  he joyfully SCREAMS the word.The same goes for the Christmas tree.
I mean how cool is that?!  There is a TREE inside the house!
And that TREE has LIGHTS on it!
Jack refers to it as the TRISTRIS tree.
Our tristris tree is devoid of anything fragile or breakable.  I mean, what with all the lights and such, it is ripe for getting Leggos, straws and blocks thrown at it.
Christmas morning will be just the same for Jack.
He will rise.  He will get his bowl of  cereal and a drink and will sit in the chair watching Spongebob.  He will get his meds in a bowl of goat yogurt and mashed banana.  We will entice him to open presents.  And the best part will be:
RIPPING PAPER!  Sometimes the gift will be cool to him……but mostly its about ripping paper.  🙂

All the festivities will go about and Jack may or may not participate.
He may or may not stop to throw something at the tree.
He will just be Jack amidst all our strange rituals.
He will be.

And he will be loved.

 

The unspeakable

Like many, I have been trying to find balance in my life since the Sandy Hook shooting.
It’s Christmas and suddenly the blatant consumerism and garish decorations seem grotesque and absurd.

I want to write, but feel my words can do no justice to how I feel – or to the lives that were taken in such a horrific way.

I will , however provide you THIS  link to a blog I follow.
It is written by another parent of an autistic child.

And I cannot say it better than he did.  Please read.

Oh…..and by the way?
His son’s name is Jack.

What’s in a Name?

Let me  just put this out there:
I have always hated my name.

My given name is Tina.
It is NOT Christina, Albertina, Bettina or anything else other than TINA.
And to add insult to cliche injury, my middle name is Marie.

Find a woman with the name Tina and dollars to doughnuts sez her middle name is Marie.

So………….. WHY do I hate my name?
When I was little I always thought it was a “fancy” “girlie” name.  I don’t know why. Unlike other little girls, I was not into things fancy and girlie.  I have always been quite pragmatic.  I thought, when I was little , that the name “Dorothy” would be a good name for me.  It sounded sturdy.

Now here is the part of the story where I let you in on a little secret:
Mine was not an idyllic upbringing:
There was neglect.  There was abuse.  There were secrets and things NOT talked about by the light of day.

It was no secret, however,  that I had a very low birth weight.  It’s right there on my birth certificate that I weighed just under 4 pounds.  No, I was not a preemie.  Yes, I was jaundiced.  It was a story told over and over about how it looked like I could fit in the palm of one’s hand at birth.  And THIS is how I got my name.   Had I been a normal birth weight, the story went, then I would have been named Kathy. But I was TINY.  Hence the name, “Tina”.  Teeny Tiny Tina.  Get it?

yeah.  its a hoot, isn’t it ? (this last should be written in the sarcasm font, but my computer doesn’t have that.)

Flash forward a few years to a particularly nasty fight between my mother and I.

Well.  To be fair, I think SHE was doing most of the fighting, I was dodging verbal slashes and nasty remarks.
During this argument it came out that the reason for my low birth weight was that she tried to miscarry me by throwing herself down the cellar stairs. I was not wanted.
She only succeeded in damaging the placenta, hence the low birth weight.

Now, my oldest brother, whom I love dearly and would have been 7 or 8 at the time, says this is not true.
That he would have remembered it.  That it is only a story my mother made up to hurt me.
I say: either way, the effect is the same.

And so I hated my name.  I thought for a while that I would change it– but what a mess that would be!  Not just the legalities, but the pretension behind it and explaining why and blah blah blah.
When I did theater, I smooshed my names together so I became TinaMarie.
Still…….meh.
Thankfully, a slew of nieces and nephews came along.  It was found that saying “Aunt Tina” can be a little troublesome for young mouths, and so I became “Aunt T”.
T?!
Ooooooooooooooooooooooh yes please!! I LIKE IT!!!
T.
yep.  I go by T quite alot.  and I like it.

But this is a blog about Jack, isn’t it?
Ah, yes, Jack.
Jack  loves to say certain words. He plays with the sounds and the shapes of the letters.
When Jack says my name he says : “Teeeeeeeeeeeeeeeeeeeeeeeeeena” or “TEE-nuh!” .
Sometimes, if he is urgently wanting chips it’s “TinaTinaTinaTina Teeeeeeeeeeeeena”
But  it is ALWAYS said in a sweet tone.  Never a reprimand.  Never anger.

And so, Jack has given back my name.
Jack has made it so I can hear it, accept it, and answer to it without anger or hurt in my heart.

After all…………..What is in a name?
Listen to THIS and you’ll know it’s love.

A beautiful face

I have lots to write about.
I have oodles of things that I want to say.

I have gripes, complaints, information, and news to disseminate.

But not right now.

RIGHT NOW I just want you to see how happy Jack was yesterday.
These shots were post temper tantrum (he wanted “SHOES ONE” and “CAR YES!” a little too early)

But once all that screaming, anger, frustration and vitriol passed…..
Here he was.  In a patch of sunshine . Smiling.
That’s the way to move on in life, don’t you think?
So….enjoy these pictures.
I know I do!

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