The best laid plans………

Let me tell you about traveling with Jack.

Jack could sit in the car and ride for hours and hours and never get bored or complain or want to stop…….He is delighted by the “spinnings” on the cars. (wheels) He see squares everywhere. (fences and bridges). When the wipers come on it brings a paroxysms of unadulterated joy.

Now. Let me tell you about traveling with Jack.
It requires an immense amount of planning and list making.  Meals made ahead of time.  Baby monitors, sleep machines, toys, dvds, medication. Special blanket and airplane pillow.
Scoping out the hotel room to look for dangers.

And so it was with this in mind we proceeded to Oakland Children’s Hospital for our appointments– oh! and please bear in mind, that OCH is a good six hours away and requires all sorts of planning for my dear husband and I to get away ourselves.  AND making that all work with the doctors and clinics we need to see once we get there

Did I mention the word logistics?

Rightio, then.
We planned to leave right after work on Wednesday.
Clay had the car loaded and ready to roll.

All systems go, 3, 2, 1………

True to form, Jack had a blast.
I was able to get some handwork done, and Clay was ever the stalwart driver.
We made good time and arrived at the hotel knowing we had an early rise to get to OCH in the morning to be sedated for the MRI.

That’s NOT what happened.
Upon arrival at the hotel, Jack became grumpy.
Once in the room, he climbed up on the bed and asked for blanket and pillow.
While changing his pants and clothes we realized:
Not just warm, but HOT.  Baked potato hot.  Had it been a cartoon, you would have seen the waves of heat coming off him.

Not good.  Not good at all.
This was a game changer.  You can’t go in to be sedated for an MRI if you have a fever.
Fevers like this can trigger seizures (even in “regular” kids).
No time to think about anything, but get the fever down.
Strip him down. Acetaminophen. Cool rags.

Soon, he was comfortable enough to sleep.  I crawled in bed next to him.
He snuggled in, grabbed one of my braids, sighed, and fell to sleep.

HE slept well.  ME? Not so much. Clay? Not really at all.

Waking brought a round of phone calls, rescheduling and trying to get another game plan going.
They scheduled us for the next morning, providing he could go 24 hours without a fever.
Jack seemed to be on the upswing…..but….who can say for sure……OK.  we’ll try that.
The next day Jack was moving slow, but in good spirits.  Only slightly warm.  We ventured out for a drive.
By early afternoon we were back to fever (not as high, acetaminophen doing the trick)
and the next days appointment cancelled as well.

So the bright side?
Lots of lounging on a big bed with fluffy pillows.
Showers with unlimited hot water.
AND no household chores pressing in on us making us feel like we needed to get SOMETHING done.

SO back to the drawing board.
We are looking at trying to plan the next round of appointments around ANOTHER set of appointments that needs to be done in April.
Good Lord willin’ and  the creek don’t rise, we can get it ALL scheduled for our spring break.

Here’s hoping!


Another day, not just another dollar

As I write this at 5:20 am, Jackson has been up since 4:20 am.
The first 15 minutes of which was him in bed hittting the covers, then flinging his arm upwards with the sound of
“woo-hooooooooooooooooo! *gigglegiggle*woooooooooooooohooooo! *gigglegiggle*
No amounts of gently rubbing his back and quietly saying “shhhhhhhhhhhhhh nighttime.  shhhhhhhhhhh bed” was going to change the fact that Mr. Jackson was ready to get up and at ’em this morning

I must say, as far as early risers go:  Jack awakes with a purpose and a joy.
I watched him trundle down the hallway and into the kitchen with a giggle.

And I think back to Jack’s day yesterday.
Wait.  Not JUST a good day.
He had a day that was full of contentment, compliance, and joy.
He came in from an afternoon of throwing fuzz bits to the cold crisp breeze.
He ate his dinner with no complaint.
He sang while walking down the hallway to get a bath.
We sang songs and splashed in the tub.
He delighted in teasing us about one of his toys…….
(Octagon! “no, Jack, that is a circle!” *giggle giggle* OCTAGON!!)
He engaged us.
He made eye contact.
He responded to love and hugs.
When it was time to settle down, he requested chair time with daddy-
(wanna sit with you.)
He cuddled and became sleepy with daddy and went willingly to bed.
He talked of his day to me before falling soundly asleep
(circle.  mmmmmmmmmm wooohooo!mmmmmm octagon. spinning.)

Then finally : soft contented snores.

And I knew.  He had a HAPPY in his soul that day.

Truly happy.  A contentment. A gratification he had- it seemed– with himself for successfully navigating the world….

now that I think about it……
maybe that’s why he just couldn’t wait to get up –

and do it all over again.

*sips coffee*
Lesson learned, Tina, lesson learned!


Kindness does exist

I had a pleasant surprise Friday afternoon

Between the horrific incidents in India, Sandy Hook, and Steubenville I will admit to feeling less than stellar about humanity as of late.

So, it’s Friday after noon.  Ten minutes before dismissal and my first grade class is participating in TIDY FRIDAY:
Getting the classroom tidy (pencils sharpened, books straightened, etc) before the weekend.
I look out the window and I see Jack waiting in the yard of his classroom.
I also see parents lining up at the gate waiting for the release of their little cherubs.
Then I see a boy– he looks to be about 12.
He is on a bike.
He is waiting too– perhaps for a sibling?
And I see  him wave.
To Jack.
Jack responds with a little stimming dance. (hands flapping, an excited little crouch)
Another wave.
Another dance.
It appears that the boy is also speaking to Jack.

And so our class is dismissed and I go to pick up Jack.  As always, he is happy to see me and we go….
But not before I steer Jack off the path to this boy.
Jack is having NONE of that….he does not like deviation from routine so he protests in a way that only a non verbal autistic child can.


Still, I approach this young man and say
“I saw that you were waving to my son.”
He looks panic struck for a moment.
He says: “Yes.  Is that OK?”
I touch him on the shoulder and say:
“It is VERY OK.  And I want to thank you for your kindness”
He looks relieved
He says, “oh.  OK! no problem. He was just standing there.  He looked happy”
I tell him how much that kindness means to me and we turn to go.
He says “Ma’am? What’s his name?”
I turn: “Jackson”
He waves again, “Bye Jackson!”

Now this may not be THAT big of a deal.  But it gave me hope.
It made me feel good.
There’s a kid that took a moment to think outside himself– at an age where that is not the norm, no matter HOW good they are raised– to bring a smile to someone else.
Someone way outside the “norm”…..

Moments like that restore my faith in humanity.
I hope you find those small moments as well.  🙂

SEIZE the day

Do you know what a seizure looks like?
For reals and for true?

Unless you are related to a person with epilepsy or a seizure disorder, chances are you don’t.  And more power to ya’–  I hope you go your whole life without having to deal with one.

But let me tell you– you may see someone having one and not even know it.
TV and movies would have us believe that seizures mean a person flails around like a just caught fish and comes out of it fairly easily.


Jack has/had seizures.
I have seen him flail around and held him while it happened
But TV doesn’t talk about how the body goes dead weight, stiff and has a jerking motion to just one side…
or the vomiting
or the loss of bowels
or the danger of aspiration
or the danger of not breathing
or the possibility of being life flighted
(Check the lips, check the pupils, get the rescue meds, call 911)

There are those seizures.

Then there are the ones that are NOT like that.
The body stiffens, the eyes go glassy and the head drops.
Jackson becomes non responsive and we try to “talk him back”
And they pass……

Or Jackson starts to grind his teeth and gag…..
That starts another type…..

You have heard me talk alot on this blog about living in the moment
But I must also say that we live moment TO moment…..

It can be exhausting.
And you can never let your guard down.

I give you this video to watch –it was taken a few days ago.

Jack was having a grand time watching our neighbors dog chase bits of fuzz ball over the fence….
It was FABulous fun.
But watch.
WATCH the video in its entirety,
And see if you can spot our lives change in an instant.

Seize the day, my friends…..because every moment is precious.

And just so you know….
He was fine.
A little rest, a snack , and water and he was back at being Jack.  ❤