And the cow jumped over the moon

Jackson has a very special pillow.
We don’t go on any trip without it.
He doesn’t sit in his chair without it.
Well– truth be told it’s not really the PILLOW it’s a pillow CASE

Wait.

Let me go back about 7 years

Clay ( Jackson’s Daddy) is a MAJOR WWI history buff. Specifically the airplanes. He’s the type of guy that when you’re watching a movie says “Oh, that’s a Blah flippity blah blah but that couldn’t have flown THEN  because they hadn’t started production until…….”
Yeah. He’s THAT guy. So he had a t shirt that had an airplane on it. A WWII P40 to be exact. He LOVED this shirt, but it was wearing thin, and Clay was loathe to part with it because the design was so cool. No problem for a crafty dame like myself, I turned it into a simple t shirt pillow.

We weren’t prepared for Jackson to glom on to this pillow. But he did. It became HIS airplane pillow.

He sits in his chair and pats it.  He looks at the plane on it.  He asks for it.

It goes through a cycle of use, wash, repair, use, wash repair,repair repair.

All too soon the t shirt fabric is almost too thin to BE a pillow.  And the batting inside it matted and lumpy and misshapen from repeated washings.

Time to get creative again

I cut away everything BUT the airplane and salvage what I can.
I stabilize it ( oh how I love you SF101)  and affix it to a custom made pillow case that matches the colors and present it to Jack.

Thankfully it  passed the test. It’s been well over two years and its still going strong.

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But……… I have tried breaking the obsession.  I’ve tried introducing other pillows and pillow cases.  I want a back up.  I want something ELSE to be able to take the place……Just in case…

I’ve tried baseballs

I’ve tried Spongebob

Etc etc ad nauseum

I would place the pillow near him and I would get a resounding

Noooooo–ooooo
Loud and clear

But then. I found it

THE fabric that would TOTALLY captivate him!!

I smugly patted myself on the back, ordered the fabric and

TODAY made the pillow cases.

The fabrics? oh just…….Prints of Jacks all time favorite book Goodnight Moon ! Cows jumping over the moon! A red balloon in the great green room !! Pictures from the book.
Perfect images !!
RIGHT?! How much more perfect could it possibly be?!

You have to know–  there are at least 5 copies of Goodnight, moon! in this house.
2 ALWAYS within his reach.

I put one of the pillow cases on the spare pillow. I walk over to the chair.

He sees it and says, “Goodnight moon. La Luna”

I’m ecstatic
I put the pillow on his lap

He says, “No”

His respite worker says, “Jack , see it’s on your pillow – Goodnight moon on your pillow!”

He pushes it away and begins to make a noise that sounds like a vintage Plymouth trying to start on a cold morning.  His voice rises in pitch as he emphatically states . “Nooooo-oooooo!”  pronounced with several syllables.

I take the pillow away.

I am totally bummed  and I chalk it up to his obsession with the airplane pillow .
(Autism 1 Tina 0) I take pictures of the pillowcases and post on social media because I still think they’re pretty cool. And beautiful.

And that’s what we geek sewers do ☺️

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Now it’s night and   we are putting Jack to bed when I remember –” I gotta go retrieve Jacks pillows for bed — Aw heck. I’m not gonna put the old pillowcases back on. I’ll just leave the Goodnight Moon ones on. He never notices pillowcases on the bed.”

Wrong.

Wrong.

Wrong.

Jack  is getting into bed and all we hear is:

“Daddy. The cow jumping over the moon. I see the circles. The moon. The moon. La Luna. The moon Daddy? I see the circles. The cow jumping over the moon.”

His hands would flap. He would look at his pillow case and smile. He was animated. He was communicating. He was engaged and engaging. He kept looking at us.  He kept looking at his pillowcase.  It  went on and on long after the lights went out.

I made him happy.

I made Jackson very, very happy when I had absolutely no expectation to do so and wasn’t trying to.

I wanted Jackson to want that pillow case for his chair and enjoy it it THERE .   He didn’t.

And in my shortsightedness, that’s where I let it end. But that’s not where JACK let it end.

I wonder how often we allow our expectations to limit our enjoyment of something.

I know for Jack , whose head is resting upon pictures of the cow jumping over the moon, who went to sleep saying “Tina the moon the moon the moon Tina “– He taught me -once again – to live in the moment.  Be open to all the joy that is out there.

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New Year, Same Disease

Last time around this time of the year I was full of hope for 2016

I had been invited to a blogging conference back east by the pharmaceutical company Novartis (#sponsored), Jackson had been making great progress by leaps and bounds, AND he had been seizure free for nigh on 3 years.

Then.  Then 2016 happened.

Say what you want about celebrity deaths and the election of a reality TV star to the highest office in the US–
In the TSC community?  Shit got real.

Let’s get back to that blogging conference.  Novartis contacted several of us “blogging moms” — whom I christened “the real Housewives of TSC” to come back east and discuss the disease : how we all deal with it ,  show us some things they were coming out with , get our input, etc.
There were five of us.
It was so exciting to finally meet in person these women who I had previously only met online.
It was the coolest thing I can think of to sit in a room with these women and talk so openly without explanation.  With understanding.  With empathy and compassion and KNOWING.
You got to to say words like “sega” and “rapamune” without tons of back story.
We kept in touch AFTER the conference too.

And you know what?
I can honestly say, without reservation:
2016 and TSC can suck it.
From each and every last one of  us TSC mommies.

Here’s Becky and Connor from Mixed Up Mommy.  How’s that for a September , eh?
Stephanie & Oliver from Lanier Landing hasn’t had a break in a long time and most of the recent holidays were spent in ER/ICU/Hospital.  Wheeeeee.
Heather and Maddie had their issues as well.
And last but not least there is Larissa and Emmaus’ who ALSO had their time in the ICU.

These are the TSC mommies I met at the conference. They do not include other families I follow and love like Brody’s Buddies and the lovable, awesome DAC.

And then there is us.  We are still dealing with the aftermath of Jackson’s broken leg and osteoporosis.

What I am trying to say is
THE STRUGGLE IS REAL.

So yeah, 2016? You can F*&K right off.
My TSC friends and I would like to raise a hail and hearty “F*&K YOU” And the genetic horse you rode in on.
Take your seizures, your invasive growths, and your neurological nightmares and shove them where the sun don’t shine.

2017 will find us fighting the good fight -as always. It is our way of life.

Oh.  And Novartis? Anytime you want to have us back, we will gladly come back, and come together, and share again.
If for no other reason than to see each each other , to revel in our bond, and to tell YOU and each other:
We are not done.
And we will never be done fighting.

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Gratitude: A way of Life

I get that people are well-meaning.
I do.
They want to commiserate, to show you they understand, to let you know they “get it“.

But the sad truth of the matter is: they really don’t.
9 days ago Jackson had his first grand mal seizure in over three years.

It was a- full-blown – body- shaking -drooling -get -the- rescue- meds seizure.
And then less than 12 hours later? It happened again.
In his sleep.

Thankfully, I sleep with Jackson so it didn’t go by unnoticed and we were able to follow SOP.

I related this to a coworker…..and how yeah….it sucks and I am not getting much sleep.
And Jack is still not walking even though his leg is healed and……
She TOTALLY gets it cause her 7-year-old wets the bed.
And there is sooooo much laundry to do “It’s relentless” she says.

Hmmmmmmmm fear of SUDEP  versus your neurotypical kid wetting the bed…….
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And I went off and pondered.
There are many of you out there that DO get it– fellow TSC moms, special needs parents, and those in our close inner circle that see what it takes to raise Jack.

And yet……
WE have it easy.

Recently the world lost a beautiful soul by the name of Kreed.
Kreed was medically complicated beyond normal standards, but a shining star with two moms whose strength and devotion was beyond compare.
His story and efforts to raise funds to bring him home can be found here on his FaceBook page.  I encourage you to visit if you haven’t before. Go back and read over his life and his struggle. Get to know one of the most joyous and courageous souls you’ll ever meet.

I’ve been at a loss to truly put my emotions into words the last few days.
I look around at the world and I want to scream:  quit fretting about petty bullshit!
Who cares if you can’t find your LuLaRoe unicorn leggings?
Who cares if your coffee at Starbucks didn’t get the full shot of vanilla?
Who gives a good goddamn that ( fill in the blank with whatever you are worrying about at this moment that is not life threatening or has the potential to be)?

I have friends in the TSC community who’s children are in and out of ERs.  Seizures.  A cold that turns into pneumonia and threatens the life of the child and months of progress lost.
I have friends who have to deal with their children’s feeding tubes, complicated medical procedures, and fight the system trying to get services. And yet we as parents and caregivers and sisters and brothers get up every single day and do it all over again.

And so to you that do NOT deal with this?
I say:

Practice an attitude of gratitude.
Realize that — you know what?
Things could be a whole lot worse.
Maybe be grateful that you CAN spontaneously go to Starbucks.
Be grateful that your child who is being too loud– can TALK.
Be grateful.

I have this standard reply I give people when they apologize for something silly:
Like the cashier in the grocery store who apologizes for a wait in line, or when a waiter apologizes for being out of a food item

“if that is the worst thing that happens to me today, then life is pretty damn good”

Be grateful today.
Find your blessings
Because I guarantee you
You have a whole lot of them.

Let your creed be LIVE.
and LIVE JOYFULLY.
Do it for Kreed. Do it for Jack.

Another leg of the journey……..

Another leg of the journey……..

I may be a little late in saying this, but……

HAPPY NEW YEAR!

Yeah.
I’ve been a little busy.  You see, Jackson took a minor spill on New Years Eve and life hasn’t been the same since.
First off– the minor spill had MAJOR implications. Jack broke his leg when he stumbled between the grass and the sidewalk.
If it was you or me, we might just get up, brush ourselves off and move on.
But it was Jackson.
And so we found ourselves in the ER
And we found ourselves hearing his leg was broken
And we found ourselves hearing the radiologist offhandedly remark about how Jack has osteoporosis
And we found ourselves at a loss as to how to transfer a child  (weighing well over a hundred pounds) with a BROKEN LEG — not yet casted –without a wheelchair.
And we found ourselves at a moment trying to figure out WHAT TO DO until the leg was cast and Jack could be mobile.

Think about it:
Moving Jack. Bathing Jack.  Toileting issues.
ALL of these things we have to figure out
on New Years Eve.

But, like cream, we rise above and  we DO figure it out.
We begin to research the connection between Dilantin and osteoporosis.
We get an unexpected call from a friend who HAS a transfer chair (AND a pan of tamales)
Dear friends visit with food, balloons, and coffee.

We learn that our low kitchen counter is the perfect height for Jack to lean on for pants changing.
We learn that once Jack gets his cast on, he can bear a little weight and scoot  about in his chair.
We learn that he comes to love his “wheels”.
We learn that his big sister is a CHAMP and at fifteen is every bit as qualified to care for her brother as any respite worker we’ve had.
We learn – yet again- the resilience of the human spirit, and our family’s ability to rise above what TSC throws at us.

And Jack?
On behalf of Jackson I would like to say: Fuck you, once again, TSC, FUCK you.
We finally hit our stride.
We’d been seizure free for two years.
Language and thinking and developmental growth was all happening and ……

BAM

When we weren’t looking, and when we were thinking we were soooooooooo happy because we were seizure free…….something else HAD to pop up.

Osteoporosis as 13.
Possible issues with growth plates due to the osteoporosis.
Maybe even rheumatoid arthritis.

And the connection?
One of the seizure meds we are using.
How’s that for irony?
There is a connection  but we were never aware of it.
And to add insult to injury?  You cannot add calcium supplements to counteract the effect Dilantin has.  Why? Because too much calcium renders the seizure med ineffective.
Wheeeeeeeeeeeeeeeeeeeeeeeeee

OK.
So the logical step would be to remove the Dilantin, yes?
I ask you: What would YOU do?
You’ve finally gotten seizure control.
(after years and years of seizures.  life flights.  rectal delivery emergency meds. years of hit and miss with other meds)
Now we disrupt that and consider:  Will the approach of puberty have any affect on the seizures?  The fact that the tumors have not grown and in some cases are shrinking- will THAT affect the seizures?
Do you wean off of EVERYTHING and start from ground zero?

These are the things we will be discussing with our TSC clinic.  And the rub?
There are NO REAL answers or SOP, or fixed protocol.
THAT , my friends is the reality of TSC.
And our reality with Jackson?
We fight, we research, we protect, we support and we LOVE.

Jack.
I am there for him every day, and I will ALWAYS be there.

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Saving grace

It was a cool and overcast afternoon.
Jackson plopped himself down on the couch and stated, “Yes, shoes on.”
Shoes on, then a sweatshirt pulled over his head, he stopped to  pick up a Slinky from the floor.  Then he picked one up from the couch.  And another from over by the door.  (Yes, it is true: our home is lousy with Slinkys) Chubby hands full of Slinkys when Jack spies an “open”.  (to you and I its a wire basket.  to Jackson, it is an “open”)
Hands full, Jackson heads out to the door and settles onto the swing.
He stimmed.  He swang. He rearranged the Slinkys in a pleasing manner, and laughed at the wind.
All of Jacksons motions are deliberate.  There is never a wasted motion.
This continued for a bit and he gathered his treasures and made his way across the yard to the fence line.

I took this moment to sit myself down on the swing and enjoy the afternoon and the view.

And the view?
Jackson playing with his Slinkys by the fence.  His left index finger poked at the corner of his left eye.  His right hand above his head- Slinky bouncing from his fingertips, just grazing the ground.
I call out, “Jackson!! No poke-a- eye!” and his left hand snaps down to his side.
He bends over to pick up another slinky.  It is connected to another Slinky and the wire basket.
I rise to help him.
Then sit.
He hasn’t asked for my help.
I watch him work his way through it. The first Slinky gets set down on the ground and both hands start working on the tangle.  His head tilts to the side with a purpose.  Something about the crosshatch of of the wire basket and the Slinky catches his fancy and he smiles.
His hands work again.  The head tilts.  Another smile.

Soon, Jackson has worked free the tangled Slinky and rises up with two Slinkys — one in each hand.
Standing now, a breeze fluffs his hair as well as the plastic coils.

He is happy with himself.
He is happy with his work.
He is in a moment of grace.

I needed this lesson– to let things unfold– not to rush into solving a problem that wasn’t even a problem.  To remember that Jackson CAN ask for “help with it”– and to let him work out what he can– or chooses to.

Because sometimes a tangled mess of Slinky’s can lead to life’s great lessons.

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Aaaaaaaaand we’re back!

I’ve heard it said that “blogs are crap, and just vanish when the power goes out”.
While this may be true when it comes to blogs about Traci Lords porn, fancy shoes, or the fashion choices of folks in Humboldt County California, I can personally attest to the power of “mommy blogs” and the online support community of special needs parents.

My online voice has been quieted while my family has been going through some legal court stuff that was put in motion to ensure the continuous care of Jackson should something happen to my husband.

Let me get this out there:
I blog for Jackson.  For myself.  And for those that choose to read it and carry away a grain of truth or a modicum of hope.   I believe that I have a unique voice that rings true to some.
I am a PollyAnna purist who can find the light in any darkness.
There has never been any adversity or battle that I could not overcome.
Ever.
And there have been plenty.
What has kept me afloat in the darkest of times has been the mantra:
THIS IS FINITE

Yep all good things must come to an end.  And conversely– so must the bad.

Our legal struggles are not over.

But I am choosing to get back into the habit of tapping on the keyboard and getting out my brand of blogging.
To document the life of a child with a rare genetic disease, a seizure disorder, severe autism, and a glowing soul.  To document the lessons I am taught.  To remind others in the same position that there is joy to be found.  There is beauty in the struggle.
There are monumental life lessons that are there for the taking.

And I am back– with a vengeance– to share them with you.

Stay tuned.
There is so much more to come.

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

Tuberous Sclerosis Awareness Day

oh crap.
May 15th has been deemed Tuberous Sclerosis Awareness Day.
May 15th came and went.
And it was only because I saw other people’s memes that I was able to throw a couple of reminders up on Jack’s FaceBook page.

But the actual factual truth is:
I don’t really care about it.

There I said it and I would say it again if I had to.
Sure, I totally care if you or your kid has it.  I can give you all sorts of info and advise you on what has and hasn’t worked for us.
But for reals?
I AM ALL TOO AWARE.

What I would like is a day of UNawareness.
I would love a day that I could sleep in and awake to find my twelve-year-old boy sitting on the couch , slurping down cereal and milk , and playing video games.
I would love a day that did not include incredible amounts of medicine and diaper changes.
I would love a day that did not require awareness of possible seizures.
I would love a day that did require me to be hyper vigilant.

I would love a day that I was NOT aware of the existence of Tuberous Sclerosis Complex and all that goes with it.

But there is no day for that.
And the thought of the day when I no longer have to think about it is too sad to imagine, because that means that Jack is  no longer in my life.

Now….. for all you people out there, raising awareness and fighting the fight:
I applaud you.
I commend you.
I THANK YOU
for doing what I cannot.
for doing what I am too tired and frazzled to do.

Please forgive me if I fall short on raising awareness and focus instead on raising Jack.

Jackson.  I a aware that he has Tuberous Sclerosis Complex

Jackson. I a aware that he has Tuberous Sclerosis Complex

 

 

 

 

Dancing in the Moonlight

Hang on….
We are gonna need a soundtrack for this installment.
Please, go HERE and listen.

So yesterday, Jackson’s daddy put up a Wind Catcher that he had purchased at Costco.
Call it a Wind Catcher.   Call it a Garden Spinner. Call it whatever you want…….. JACK will call it a “Spinning” And from the time Clay took it out of the box and began assembly Jackson was engaged and interested.

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HOLY CATS!
This thing spins in TWO different directions.
It catches the LIGHT!!
It casts the most amazing shadows!!!
And……..
IT’S RIGHT THERE IN JACKS BACK YARD!!
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Oh how delighted he was……
He stood there and played for hours….
Threw rocks at it. Threw pieces of fuzzball at it.
He spun it with his hands when the wind died down and was beside himself with Joy watching the shadows it cast.

But, there is always a down side to obsession with autistic kids.
You can’t reason.  You can’t explain temperance.  You can’t advise on moderation.

So Jack was none too happy to step away from the spinning.
I fed him outside.
He got on an extra sweatshirt.
And he stayed till dusk turned to dark– still laughing.  Still happy……

And when it became too late to stay outside, I braced myself for the struggle to get him back in.

I needn’t have.
I went outside and stood next to Jack in the moonlight.
He smiled.
He said “I see the spinning, Tina.  I see the spinning.”
I told him that I saw it too.
He must have know it was time to go in, because he turned and started walking back to the house with me.
He stopped mid way.
I turned to face him and he put his arms out.
I leaned down and he put his arms around me.
Then he began his happy dance, his happy song.
It basically consists of Jack rocking back and forth with a little bounce and chanting : “anu, anu, anu , anu, anu anu”

Time stood still at that moment.
I gave myself up to his song and his dance.

 

And like the lyrics go….
you cant dance and stay uptight 
its a supernatural delight 
everybody was dancing in the moonlight

And Jack dances divinely.