You DON’T know Jack

SO here we are — It’s May and that means Tuberous Sclerosis Awareness Month…..

I  could start in on cold hard facts about seizures, tumors, medication et al, ad nauseum, but I thought it would be better to tell you about the little boy– some things about who he is, rather than what he has.

 

  • Jack has an airplane pillow that he loves.  It is made out of an old t-shirt his dad bought him that had a P40 with sharks mouth on it.  When the t-shirt became too small, I turned it into a pillow just on a whim.  Had I known it was going to be such a big hit, I would have crafted it better.  No matter.  It got worn down and loved on and became threadbare.  So the picture got cut out, reinforced and sewn onto ANOTHER t shirt pillow.  And it is still a much beloved and cherished comfort item.  When sick, when tired, when in need of comfort, Jackson will ask “Airplane pillow?
  • Jack has, over the last year, developed a sense of humor.  While he will often shout -seemingly out of nowhere “FUNNY FUNNY”, he has learned how to “trick us” on purpose.  He will show us the base of a stacking toy– a circle– and say “It’s an octagon!” to which we will reply “That’s not an octagon, that is a CIRCLE!!” And that just delights him and tickles him to no end.  He will do this with other shapes and items for the sheer joy of being corrected.
  • Jack is very enamored of his sister Darrah.  He will stand at the end of the hallway (where we have placed a gate) and yell to her room “Darrah!? Ner are youuuuuuooou?”  He loves to sit on her bed with her while she plays video games or listens to music. When she has friends over, he will do the same thing and all of Darrah’s friends treat him with kindness and respect.  He has learned the word “sister” and hugs and kisses her every night before bed.
  • Jack has made a lovely friendship with my ex husband.  While it seems rather unusual to people, my ex (Darrah’s father) and I have an incredibly great relationship.  S0 much so that Clay and I  encouraged him to move in to the mother in law unit on our property.  He delights in blowing bubbles over the fence for Jack and Jack always says hello to him -WITHOUT prompting– when he comes into our home.  They are both fairly solitary creatures and I believe that they recognize that in each other.
  • Jack tells me about his day when I put him to sleep at night.  Over the sound of the sleep machine, his hand in mine, I get to hear about rectangles, spinnings, straws, woo-hoo, and other mumblings.  Then they taper off and I get to hear a soft snore not unlike the purring of a cat.  Jack lives and plays hard.  It’s only natural that he sleeps pretty hard, too.
  • Things that amuse and delight Jack : Straws, circles, Crocs, baseball, fans, rectangles, Spongebob, Elmo, a book about Cats, Legos, Daddy’s HAT on his HEAD!, fuzzballs in the breeze, balloons, the moon, throwing things, warm breezes, the bounce-poline, and watching children play.  This list may be amended at any given time.
  • Each of us in our immediate family is “authorized” by Jack for a certain story.  While each of us is certainly capable of reading to Jack, we are each associated with a book and no one else can do it “right”.  For me, GOOD NIGHT MOON.  Darrah gets the CAT BOOK.  And Daddy reads the Spongebob series.
  • Jack is a force of nature. There is a purpose about the way he walks.  He is never bored. He is always aware and watching

This is but a sliver of who Jack is.
There is also more courage and joy  in him than you could possibly imagine.

Every day is journey.  Every day is discovery.

And every day holds the possibility of seizures.
And every day he has over 30 tumors in his brain.
And every day he is severely autistic.

EVERYDAY is Tuberous Sclerosis Awareness Day in our home.
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The more you know

For this blog entry I am bringing out and dusting off a piece I did almost a year ago on FB– before the blog and before the Captain Jacktastic page.  It’s a kind of crash course in what our day-to-day life is all about.  Because I wanted to dispel the myth that I sit on a chaise lounge all day reading People magazine, eating bon bons and sipping French 75s.  😉

Did YOU know……

I don’t sleep  with my husband?  Well.  SOMETIMES I do.  The night-time routine is as follows: The boy gets his medicine in the chair with Clay.  They snuggle and when it comes time for bed, Jack will say “PV OFF”.  Then it is my turn to take  him back to bed and get him to sleep.  Sleep for Jack requires a completely dark room and a sleep machine .  Getting him to sleep can take anywhere between 20 minutes to 2 hours. On a good night, I am able to rise from bed and go out to the living room and spend time with Clay.  AND get into bed with him and snuggle, etc.  Maybe even fall asleep. However,  sooner or later I make my way back to Jacks bed — for several reasons. One being if he wakes in the middle of the night he is almost impossible to get back to sleep unless there is immediate intervention. Two — early morning waking  is prime  seizure time.

Did YOU know……

Clay and I don’t really get to “date”?  We don’t have  those spur of the moments….”oh hey, honey, let’s go catch that new flick– So and So can come watch the kids for us!” Nope.  Once a week, the planets align and we get three hours of respite (5pm to 8 pm)  where we can go have dinner or cocktails, etc.  We hold this 3 hour time slot in high esteem.  It is necessary for us as a couple to have this, and we DO NO take it for granted.

Did YOU know……

Clay and I totally support each other going out for “girls” night or in his case “club meetings”?  We trade-off.  It’s only fair.AND only smart, too.  We need breaks.  This keeps us sane and our marriage functioning. Neither of us begrudge each other these respites.  And we encourage them.

Did YOU know……

Holding down a job can be hard?  Sure.  MOST jobs give you a set number of sick days- but a good flu or a bout of bronchitis can use them up.   Therefor Clay and I have to be über vigilant about our own health.  When your child is on immnio suppressants AND has seizures AND requires trips to Oakland Children’s Hospital  ….those days can get eaten up rather quickly.  SOME bosses have been understanding.  Others? Not.  So.  much. .  (“can’t you just put him on seizure meds?” Oh gee! *slaps forehead* why didn’t *I* think of that?!)

and speaking of seizures…….

Did YOU know…..

We are ever hyper vigilant?   Was that just zoning out or was that a stare? Did that smile look a little crooked to you? Did he just look down or was that a nod?  Even when Jack has been seizure free for months, there is always that nagging in the back of your mind.  There is always that worry of “we’ve gone so long (too long?!) without a seizure- are we DUE?”  So even when you think  you are  seizure  free you are not.  You live with the “what if ” fear every day.  Even good days.

Did YOU know……

As a family we must function as a well oiled machine?  and we ALL rise to the occasion.  That includes Darrah who is wise and compassionate beyond her 12 years.  She is her brothers greatest champion and I could not be more of proud of her if I tried.

Did YOU know…..

WE have to be on top of making sure medications are refilled in a timely manner (can’t use auto refill on “controlled substances”) ?Snacks must be low calorie, gluten free, etc etc etc……Grocery shopping is an adventure and we pray to the Chip gods for good sales at the co-op.  We plan, we plot, and make sure to NEVER run out of anything.

And lastly ,
DID YOU KNOW…….

I wouldn’t trade it for the world?

Times can be rough, tough and frightening, but never in my life have I been more AWARE-

Of small and large blessings.

Of what’s truly important.

Of what the true meaning of love is.

Of what real compassion is on a daily basis.

And I would not have it any other way.

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)  ❤

The best laid plans………

Let me tell you about traveling with Jack.

HE LOVES IT!
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………
AND WE’RE OFF!

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.

Except…..
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:
FEVER.
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.
Naps.
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!

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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.

 

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.

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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THAT word

Today, in internet land I posted a comment on a FB page stating that I would NOT join the “let’s all get behind Papa John’s pizza” deal and “boost the economy” by buying said pizza
My reason, I stated, was:
I refuse to support a company that claims Obama is making it hard for them to make any money at all therefore cannot give their employees proper benefits, BUT they can afford to give away two million pizzas.

I thought it was pretty sound reasoning.
And it is documented all over the interwebs.
AND…well, I stated it nicely with no name calling.

THIS was posted after it:
Give away pizza? Are u a retard? Another liberal who doesn’t understand.

yeah.
THAT word.

I asked the person, very nicely to consider the use of this pejorative, as name calling is not productive.

His response?

Tina I don’t care what you want and you can take that to the bank. Retard is a word in a dictionary and was the acceptable term until libs decided it wasn’t.

Oh so compassionate and clever, don’t you think?

While I DO understand that this word is INDEED in the dictionary, it should be used in a way so that it is a VERB

Take note that is is NOT used as a noun until #4

4.Slang: Disparaging .

a.a mentally retarded  person.
b.a person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.
I do not identify myself as a liberal or “lib” as this internet troll claims.
I do not usually identify myself as any one thing-
except, perhaps ,compassionate.
I do not think “libs” ruined the use of this word.
I think this word is used as a last bastion of those without an argument.
And……while Jackson may not care about the use of this word, I do.
He may be developmentally delayed
He may be brained damaged.
He may even BE “retarded”But I can guarantee you that he has a kinder heart than the person who insulted me today using that word.

And to paraphrase the troll….
I’ll take THAT to the bank.

Resistance is Futile

The all knowing omnipotent “they” say there are two certain in life:
death and taxes.

I would humbly add to that :
My inability to not be  a clutterbug
andThe constant presence of Lego’s and gears on our floor.

I went to a new friends house the other day.  It was amazing.  Well decorated.  Clean.
And no piles of “things” anywhere to be found.
And no indiscriminate small part toys on the floor or lurking in corners. (I checked!)
There were also no random cheerios or chips pieces anywhere to be found.
No errant threads or fabric scraps lurking about!

You know, what with him being brain damaged and developmentally delayed-I’m gonna’ go ahead and give Jack a pass this go around.  He throws thing for the sheer joy of watching their arc and seeing them spin.

Me?  There is no excuse.  I have an “I’ll just stack it here until I can get to it” mentality.
I am loathe to throw out any piece of fabric, ribbon, or doo-dad that I perceive can be useful in some unforeseen time.

Maybe I should just take a tip from the boy and throw it all away…..

joyfully, with glee, for the sheer joy of letting it go……

hmmmmmmmmm

I’ll get back to you on this.  🙂

What does it mean?

Every night, as I walk into the bedroom with Jack he does something that annoys the heck out of me and I can’t seem to make him stop.
He knocks over the plastic laundry hamper that sits next to the bed.
It is not a violent motion.  It is not a malicious moment.
It is just a “hey, there’s that thing…..I need to tip it over” matter of fact motion.
Sure.  I could move it.
But there is really no other place to put it.
As he climbed into bed last night, after tipping over the basket, I got to thinking about his routines.
And somehow it occurred to me that this has a purpose for him.
Whatever it is…..I am not sure WHAT it is….
but it is part of his going to bed…..
He sees me close the door.  Turn on the sleep machine.
Pull back the covers.
Perhaps this is HIS contribution.

I am going to focus on being less annoyed.
And see this through Jacks eyes.

Wish me luck.  ❤