A Holiday Message

I have been meaning to write a new entry– really I have.
And then for some odd reason THIS ENTRY of my blog has been getting renewed attention.

It started as a FaceBook note on my private page…..then morphed into a blog entry.
It speaks of routine.  It speaks of family.  It speaks of consistency and sacrifice.
More importantly, it speaks of uncompromising love.

And so, it led me to reflect on the past  two and a half years of writing about my life with Jack.

Through Jack’s page on FaceBook I have met many a righteous parent, child, grandparent, activist and TSC warrior.
We have shared love, support, empathy, understanding, and anecdotes.
We have rejoiced together over our children’s triumphs, and commiserated over the setbacks.

And so to all of you parents out there this Christmas…..
be you the parent of a special needs child , or not
be you the birth parent, or the step parent, or the parent of the heart
I say to you:

Thank you.
Happy Holidays
Take a deep breath
Let it out slow
Smile.

You’re doing great and we’ll get through this together.

The Holidays are rife with warmth and love, the New Year brings the promise of renewed energy.

I thank you all for your love and support.

with love,
T and Captain Jackstastic

Advertisements

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.