Baby Love

One of the coolest things about Jack is watching him around other kids.
He doesn’t always want to play. In true autism fashion, he likes to WATCH the kids play.
He will delight in them running AROUND him.
He will laugh hysterically when they play tag or jump on his bounce-poline.
He will even make sure WE see– “I see those kids, daddy.  I see those kids.”

But even knowing he felt this way about KIDS– we got a beautiful and tremendous surprise the other day when a friend brought over her newborn.

Baby Lavelle is about two weeks old and just under 10 pounds.
From the moment his mama brought him into our home, Jackson was entranced.
EN-TRANCED.
He was beside himself with Joy and Delight at this small creature.
He kept pulling on his mama to sit down with the baby “Sit with you? sit with you?”
He sat next to me while I held the baby.  He wanted a blanket and a pillow.  He graciously tried to put his own blanket on the baby.  He beamed.
He would look at us and say “baby.  baby.”
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He loved the nearness of the baby.
He tried to smell the baby.
He was not distraught when the baby fussed and cried.
He was gentle.  He was loving.
He full of joy and wonder at this tiny creature.

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Ah, Jackson.  Seeing once again the joy in small things– literally and figuratively.
Busting the myth that autistic children are devoid of emotions.

Jack babbled to the baby. ALOT.
I’d give all that I have and more to know WHAT he was saying or thinking.
Was he giving advice?
Was he welcoming a fellow being to the planet?
Was he telling the baby of all the joys this world has to offer?

The cynics would say that he was just mimicking adults talking to the baby.

Thankfully, I am NOT a cynic.

 

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Fuck you, Autism.

This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately.  What to write, oh what to write…..?
I would start things….but not finish.  I would have great ideas, but no way to wrap it up neatly.
This was bugging me.

Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album.  There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager.  It was delightful.

Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.

But this picture was different.  It showed a very composed, calm child with a look of peace in his face.  I was moved by the colors, the composition, and the expression on his face.

It was THIS picture:
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Just look at him.
LOOK.
What do YOU see?

I see a blank canvas upon which a masterpiece could be painted.  A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.

Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait.  is that ECRU?  I thought it would be more beige.”
No.
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.

And for that I say:
FUCK YOU AUTISM.  Fuck you and the horse you rode in on.

Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!

Fuck you and all that you stand for.

So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.

Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.

Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe.  Mainstream.
Jackson is not  paint by numbers .  He defies realism and a conventional palette.

He is cubism.  He is a Dali. He is a Pollock.   He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful.  He is art as a verb.

He is the Venus de Milo– still beautiful if not what the artist originally intended.

And listen, I may not know much about art.
But I know what I like.

And Jack is– and will always be — a thing of beauty to me.

 

So here’s to us– the  curators of outsider art– or autism parents.
We see the world differently.
We have to.

Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.

 

 

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Self Care: A Public Service Announcement

In the autism/special needs community there has been alot of discussion recently over two events.
One is the “the pink letter”  from a “pissed off mom” proposing her neighbor euthanize her grandson since he is “such a nuisance” and will “never hold a job”.  The other is the sad story of a fellow blogger and tireless advocate, Kelli Stapleton who found herself in such a dark place she saw no other option than to try to take her life and the life of her daughter.

I resisted any public comments of these on Jack’s page  for several reasons.  In the case of the pink letter, it was because it was EVERYWHERE.  It didn’t need to be addressed by me and the person that wrote it was getting enough attention.  There didn’t need to be anymore.  It was wrong and heartless.  We all knew that.  Nothing I had to say would have  added anything to the mix.  In the case of Kelli Stapleton, what COULD I say?  None of us will EVER know what happened in that moment.  Perhaps she is bipolar and trying out new meds and snapped.  There are elements at play that NONE OF US will ever know.    She was stressed.  She was tired.  She was in a dark place.  She snapped.

But these two seemingly disparate stories serve to illustrate something so very crucial to us who are caretakers of those with special needs (and I use that term in an extremely broad manner) – SELF CARE.
It doesn’t matter if you are the parent of a child on the spectrum, or with a rare genetic disease,  or a severe disability, or the caretaker of an aging parent…….  The most important thing you can do for those in your care is:
TAKE CARE OF YOURSELF.

I have strived to make this blog and Jack’s page as positive as possible and still be realistic.

Is living with Jack a joy and a blessing?  You bet it is.
Still– there are there days that I am bleary eyed from lack of sleep.  There are days that I am beyond tears with frustration.  There are days that it takes all I have to get up and do it all over again.

But I have learned to take care of myself in even the smallest ways to keep going and keep my sanity.

My husband and I communicate.  We provide each other with time away from the house.  We get away as a couple (THREE hours once a week!).  But most importantly…….we do little things to keep our sanity and our health.
For me, its small things like the occasional hot bath, Word with Friends, and sewing/crafting.
For Clay, its sitting in the backyard admiring the view, Fantasy Sport Leagues, and reading.

What these small things provide for us is a little food for our soul.  Small breaks in the routine that allow us to function properly.

What would I have done if I received that letter?
I would have been pissed.
I would have been distraught.
I would have wanted to seek out the person who wrote it.
But once the initial shock wore off, I would have dismissed it.  Shredded it and burned it– gotten the nasty energy out of my home and moved on.  I don’t  have time to focus on that type of negativity.  And it can only serve to be cancerous in my caring for Jack.

What about reaching that dark place?
I would like to think that I am strong enough with enough support to not go there–
Which is the purpose of this blog post.
I urge everyone of you who reads this– special needs parent or not.  If you are in the position of caring for someone– ANYONE– remember that you need to take care of YOU, too.

It needn’t be big and complicated.  It just needs to BE.  My sewing room is set up so that I can get in and get a small amount of wok done at any time.  Find those things that feed your soul and do them:
Five minutes of stretching.  A few minutes of crossword puzzles.   A hot bath.  Let go of high expectations for the state of your home.   Keep a list of people you know you can trust to call.   And if you start feeling like everything is too much?
STEP AWAY
CALL SOMEONE
BREATHE DEEP

Let that moment of despair pass.

I also suggest sharing and bookmarking this site  courtesy of the Post Secret community.

I thank you for reading this.  I thank you for taking the time to consider the ideas I have put forth.
I thank YOU for whatever work you are doing for someone you love.

It’s a marvelous night for a moon dance

Clay and I have what I would consider a pretty strong marriage and helm what I consider a pretty amazing extended family.
It doesn’t happen effortlessly.
Things are planned.
Things are talked out.
We run like a well oiled machine– we HAVE to.
One of the things that special needs children/children with autism need–THRIVE ON– is consistency.

So we push our egos out the way, roll up our sleeves and do what needs to be done.

In that, though, comes the danger of burnout.  Of stress. Of losing touch with everything around you.

Clay and I are each others biggest cheerleaders.  I TOTALLY encourage his “club meetings” (he and two other teachers getting together and doing “guy” stuff) . In turn he totally supports my time in the sewing room and the pedicure chair.  Darrah too gets encouraged to get out and be with friends.

But what about Clay and I as a couple?  Yeah.  THAT can be rough too.
We receive 6 hours of respite a week in 2 three hour chunks.  One of those chunks is an afterschool time slot that allows me to either get some household chores done….or run errands unencumbered of children.  The other time slot is usually Thursdays from 5 to 8 pm.  This is known as DATE NIGHT.  It is untouchable time for ANYTHING else other than Clay and I leaving the home and getting out.  We hold it sacred.
It’s not all fancy dinners, either.  It’s just TOGETHER time.
Time to reconnect and remember WHY we got together in the first place.
To reconnect as adults
To BE us.

We may go out to eat (with coupons!) We may walk the piers at the waterfront. We may sit in a great spot and listen to podcasts.  But the point is WE DO IT.  And we don’t take it for granted.

But what about family time?
You know, when you have special needs in your life, spontaneity is usually NOT the name of the game.

But you now what?
Last night it was.
Furthermore, it was not OUR idea, but Jack’s.

It has been unseasonably warm here as of late, and the air quite still.
Clay and I were exhausted.  We had a long day.  We went through Jack’s nighttime ritual (meds,etc) and Darrah was in bed after goodnight hugs doing some reading.  We settled in for some DVR’d THE SOUP and some veg out time.  Mindless activity.
Because that is what we NEEDED, right?
Wrong.

Jack, from the other room, suddenly said:
“shoes on! Daddy! Shoes on!”

What the…..?
SHOES ON?!
It was almost nine at night!
I sighed.  Then Clay said, “Jack has the right idea.”
So, crocs on and out we go.
The night was beautiful.
Jack ran to the center of the yard and danced.  A back and forth motion.  Chanting: I see it I see it I see it! I see the moon!

We sat there enjoying the night air.  Soon Jack found himself on the bounce-poline– He called, “TINA! TEEEEEEEEEEEEENA! bouncepoline?! ”  And so I went and bounced him.  All the while we chanted, “I see the moon, I see the moon, I see the moon!”

This was too much fun.
So we called for Darrah.
We all four sat under one of my HUGE quilts.
We watched Jack run in the moonlight.
We listened to Jack and Darrah laugh uproariously on the trampoline– climbing on each other.
Clay turned to me and said:

“Jack knows what’s up-
You play outside when there is sunshine and go outside to see the moon when it’s shining.”

And it’s true.
We were out there for two hours.  Watching the clouds.  Listening to the laughter.
Talking.
Being silent.
Being a cuddle puddle on the trampoline.

Right before we went in, Clay hugged us all close and said, ” This is what’s important.  THIS”

And its true–
It took Jack’s spontaneity to bring the family together and remind us that sometimes
you just have to dance with abandon in moonlight.

 

Every little thing is gonna’ be allright

I am not a complainer.
Seriously.
I am an eternal optimistic PollyAnna that can find the silver lining in any cloud.
Looking back over my life, I realize that it is/was a pretty hardcore coping mechanism.
“Everything will be ok.  It HAS to be.  Otherwise, I’m screwed.”
I can endure anything, if I know it is finite.

Now, while the majority of you reading this may think it’s an admirable trait, I assure you that it is not always a good one to be around.   It can smack of denial, sugar-coating, and dismissal.  I can attest that it drives my husband bonkers.

As a mom of a special needs child, I read a lot of Mommy/Daddy blogs.  I love connecting with other parents who truly GET what I deal with on a daily basis.  Many of these blogs are laundry lists of good-natured complaints about their kids’ behavior, frustrations of dealing with bureaucracy and red tape, and the agony of sleep deprivation.  There are detailed accounts of their days of stepping on Leggos, living with extreme OCD and other substantial letters, and cleaning up messes.  Some are angry.  Some are frustrated.  Some are at their wits end.  Most all are honest.  Many of them are funny.

MY blog? I cannot do it.
I just cannot bring myself to write that way.
And believe me when I say:
It’s not YOU, it’s ME

Unlike other parents, I SIGNED on for this.
I knew the job was dangerous when I took it.

I didn’t get “the diagnosis”.

I didn’t have to deal with the unknowing.

There was no initial heartache followed by resolve.

So, TO ME, to complain and/or vent about my lot would be unfair.

It’s been MY lot in life to make lemonade outta lemons, quilts outta scraps, and the BEST outta every situation.
I came to this table, sleeves rolled up and ready for whatever was going to come my way.
And to be fair? It’s how I deal with most everything.

I am not better than anyone.  I am just different.
As I stated before:  It’s a coping mechanism left over from my childhood.

And Jack.
In the time since I have come into Jack’s life, I have seen his behavior improve, his vocabulary explode, and his joy blossom.  How can I gripe about anything when there is so much growth?
Not just Jack…..But ME!

Jack has given me a new outlook on life.  He has me focused.  Dialed in. He has taught me to let go of what is not truly important in life and to live in the moment.

As I approach the first year of blog writing, I realize that I have found MY niche in blog writing
(ya’ gotta have a gimmick, right?)
And that is to pass onto people a little bit of my PollyAnna attitude.
To shine a light on the good in the “bad”
To remind others that THIS TOO SHALL PASS

and everything WILL be ok.
It just all depends on how YOU look at it

And from where I am sitting?
The view is pretty beautiful.

An open letter……..

As alot of you know…..we have just returned from a two week vacation where we traveled to Idaho and Utah to visit family.  It was lovely.   Jackson traveled very well. (with ALOT of pre-planning on our part!)

One of the highlights was visiting the Hill Aerospace MuseumImage

THIS, is an open letter to the woman that openly stopped and stared at Jackson at one point in our visit there.

Hello.
I understand that you might have been a little put off or uncomfortable with what you witnessed   at the Hill Air Force Air Museum.
Let me break it down for you so that you can put it in perspective.
My son , Jack, is autistic.
Jack loves, and I mean LOVES, helicopters and airplanes.  They are endlessly fascinating to him on many levels.  So that day he had reached Nirvana, Vallhalla, and Heaven all rolled into one.  It was bonus points that the hangar was cool and not brightly lit.  That echo?  A big draw, too!

And that cool ( to the touch) concrete floor was the coup de gras on that hot summer day.
He laid down on the floor so that he could see the propellers from his favorite angle:
LOOKING UP.

And that is why he yelled (at the top of his lungs) the word FAN.
What he did next was a sensory thing.  The floor was cool and slick and perfect to push oneself across on one’s back.  If YOU were a severely autistic child, YOU probably would have done the same thing.
Really.
You would have.
And it would have felt AWESOME!
Jackson, at that moment, was deliriously happy.

Now, my 13 year old self really wanted to say to you in a snippy voice:
“take a picture, it’ll last longer”

The grown woman/mother in me really would have liked you to have at least try to catch my eye.  Perhaps smile.  Maybe raise an eyebrow.  Even ask, “Is he ok?”

But no.
You openly stared.
You stood there.  You frowned.
You stared.

I thought about offering up the phrase “He’s autistic” as a way of explanation.
But decided against it.

You were closed.
You were not open to any information as far as I could tell.
You turned smartly on your heel and walked away.
My guess is that when you went home Jack and I became a dinner table story.  A cautionary tale- perhaps a narration of bad parenting.

And you know what?  It’s OK.  It really is.
Because Jack and I know the truth– and we had a really great time.

Through Jack’s eyes……

I recently posted a picture of me on FaceBook.
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That’s me.
49 years old.
No make-up.  Waist length hair in braids.  A hat.
Relaxed.

In all my Facebook picture posting history, I don’t think I ever received as many likes and compliments as I did for that picture.

It’s funny to me how life’s experiences can brainwash you.
My entire life– through my family’s eyes– my pale skin has always been a detriment.
My childhood nickname was Caspar. THEY tan just by walking by a window on a sunny day.
Make-up was always pushed upon me.  As a matter of fact, my mother suggested I start wearing lipstick in FIFTH GRADE.  She lectured me that if I had color on my lips, then I wouldn’t look so sickly.  And so the school nurse would finally stop asking if I felt well.

But as years have gone by I have lessened the amount of make-up I wore–slowly but surely.
Today I can get my whole face on in less than two minutes:
Cover up under my eyes and a few spots on my cheeks.
Translucent powder to set.
AND- of course-
lipstick

(mac Verve
I have been wearing that shade for almost a decade.  No deviation.  It works.
Should mac ever decide to discontinue that shade, I’m gonna buy out all I can find!)

But looooooong gone are the days of monochromatic eye shadow schemes to match every outfit.
Of owning a make-up bag the size of a duffel bag.
Of changing my  make up look from day to night.

And I think about WHY.
What happened to me that all of THAT went by the wayside?

Well.  Time for one.
Who has time for getting THAT kind of face on before heading out the door?
And money.  My tastes run towards mac, Christian Dior, and Bobby Brown.  That stuff ain’t cheap by ANY stretch of the imagination .

And lastly…… I started being OK with who I was.  Little by little as each procedure of make-up fell away, I began looking at myself and thinking:
“Yeah.  I look all right”
What I have held onto– my pale skin and dark lips– has become what I define as “my style”.
And I embrace what was once undesirable.

BUT– this blog is- as always– about Jack.

If you will pardon my language, Jackson could give a rats behind whether or not my skin tone is even.
I don’t think he has ever judged me on whether or not my cheeks are perfectly sculpted.
And I am pretty sure he does not have an opinion whether or not my eyes are smokey or defined.

Jack cares that I am consistent.
Jack cares that I am kind.
Jack cares that I smile at him.
Jack cares that he can count on me.

My look, my perfume, my wardrobe are all inconsequential.
My actions, my intent, my love is all that matters.

And THAT my friends, is a pretty good way to look at others.

And now a word from another mother…..

We are still in May
And that means

We are still in TUBEROUS SCLEROSIS AWARENESS MONTH!!

I asked my internet friend and mother of Connor– an adorable, sweet boy who also has TSC – to tell HER story.
Here she tells us about the diagnosis, and her journey…..

Please be sure to check out her son’s Facebook page here, and her blog here.

 

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I worried about so many things when I was pregnant. I researched the best prenatal vitamins (didn’t find much conclusive). I decided I would not have the occasional glass of wine until I was out of the first trimester, which turned into the second trimester, which turned into after birth. At most I had a sip or two at a wedding and indulged in an O’Douls. My doctor talked me into a flu shot, and then I spent the next two nights worrying that we’d be the victims of some undiscovered side effect. I lost sleep the night I ate some cheese off the naughty list. Hours were spent choosing the perfect pregnancy workout DVD that I only used once because I was too damn tired.

 

I changed the channel when Autism Speaks commercials came on. I couldn’t stand to hear the statistic at the end. We even had genetic testing done to rule out some of the more common genetic disorders. But everything rolled along fine; I didn’t even have morning sickness. Piece of cake…until week 30.

There was something strange about the heart at this visit. Words like calcium deposit, irregularity of the heart wall and the weirdest one–rhabdomyoma, were mentioned. Nothing was conclusive. But a heart defect? I hadn’t really thought about that, which is weird considering my husband had a brother who passed away in infancy due to one. I remember picking up a pamphlet and being shocked to read that the rate of cardiac defects is 1 in 100 births. Subsequent checks revealed it wasn’t growing or interfering with the heart, so by the time Connor was born, we had dismissed it as a harmless anomaly.

I worried about so many things I’d heard of–I never thought to worry about the things I hadn’t.

Tuberous sclerosis complex. Or “tubular-what?” as we knew it in the beginning. Within hours of birth Connor began to have seizures, and that, coupled with the “irregularity” in his heart, led quickly to diagnosis.

We had actually dismissed TSC weeks earlier after a Google search revealed how rare it is (estimated 1 in 6,000 live births). That kind of thing didn’t happen to US.

Now we were being told that it was indeed this rare genetic disorder and Connor might be facing brain surgery in the first few weeks of his life. Who do you talk to when it’s something nobody has ever even heard of? I’ve never been much of a math person, but I figured if it was estimated that 1-2 million people were living with it worldwide (which is a mere fraction of the population of Atlanta, and an even tinier number in the context of, say, the Chinese population) we were maybe the only people in Georgia. Definitely the only people in the Atlanta area.

Crazily enough, a Google search located another family in the area that had faced brain surgery at three weeks of age. I couldn’t believe that the one other person in Georgia that had it was so close. I contacted Wendi, who was the local chair of the TS Alliance, to get the details on her son’s surgery. At the same time I was registering shock that there even was a local alliance chapter at all. I had been shocked to find the national one. Then we found out there was a Step Forward to Cure TSC event scheduled a mere couple miles from my parents’ home. More and more people were appearing on the grid. The world was getting smaller. I didn’t understand how these people were living in such close proximity, and I had no idea.

Then came the Internet. I eased myself in slowly, “stalking” people with TSC that were doing well and living fairly normal lives. I had a love/hate relationship with Facebook as it was starting to give me answers, but how I hated my friends that posted pictures of their perfectly healthy children. It took time to join discussion groups where I also saw the more extreme end of the disorder. Not surprising considering I had buried the book of TSC stories we were given in the NICU in a drawer, not to see the light of day for several months. But once I was in, I was in. I found more peace, both from interacting with adults with TSC and from seeing the pure love from parents of more severely afflicted individuals. Gradually, my pain at seeing my friends take home their babies three days after birth subsided.

I started my blog in hopes of being part of the movement to get the word out. Let’s face it, people are more inclined to donate to and support research of things they’ve heard of. It’s frustrating to know that TSC is more common than Lou Gehrig’s disease and cystic fibrosis, yet I ask you, which of the three had you heard of before?

For the past month, I’ve hosted guest bloggers sharing their TSC stories in hopes that it will spread the word and help someone, perhaps the people who came to my blog by Googling “my child was born normal now we are told he has ts complex” or “my baby is diagnosed with rhabdomyoma now what.” The Internet saved me from drowning in bitterness and anger. I no longer feel targeted by God (even if I do have some residual anger) or punished for some unknown offense I committed. I wouldn’t exactly call it “misery loves company,” because I’m not miserable, but it’s so amazing to not feel alone. On May 1, the first day of Tuberous Sclerosis Awareness Month, my newsfeed was flooded with everyone sharing the accomplishments of their family members with TSC. It almost felt like a holiday, albeit one I’d gladly give up in exchange for a cure. I’m now friends with so many people in the TSC community that my perception is almost skewed to the other side. How do people NOT know about this condition? It’s everywhere!

I don’t know how people coped with rare diseases and disorders before the Internet. It horrifies me to think that it wasn’t that long ago that people believed they were alone. And there are still people out there that think that. I just recently met an adult with TSC who thought she was the only one until just recently. She’s 29 and just now getting connected.

So thank you to all my guest bloggers and all who share their stories in our groups. I now have friends, like Tina here, that I’ve never actually met. You, and a supportive family, are a large part of the reason that I can tackle this every day.

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Earthquakes and other tremors

Yesterday morning I was sitting right where I am now.
I was sipping my first cup of coffee in 6 days (thank you post op), enjoying its rich warmth.
The sun was shining.
My husband and daughter were en route to a track meet.
Jackson was enjoying his morning combo of cereals and Elmo on the couch.

Ah.  All is right in the world, right?

Then the earth shook.  Literally.
It was one of those low rumbling quakes that feels like there is more coming ……
but it didn’t.
When it started, I ran right to Jack and waited.
Jackson? Well.  He seemed pretty non plussed.

I sat there with him for a few moments.  And waited.   Then waited some more.
If you have ever experienced any type of earth quake, then you know it leaves you feeling…
Vulnerable.

A few deeps breaths, the realization that THAT was it.

And then back to our regularly scheduled day.

Clay and Darrah?  They didn’t even feel it.  Other friends on Facebook? A few random posts here and there.
In the great grand grand scheme of things, it wasn’t that big of a deal.
Just one of Mother Earth shakers, relieving some deep seated tension.

The rest of our day progressed nicely, if not lazily.

Nicely till the evening, that is.

Early evening Jack started getting moody.  Cranky. He was making demands.  He was throwing things.  He was trying to bang his head.
He was not using his words.  He was frustrated (WE were frustrated) .  Nothing seemed to placate him.

Finally, we urged him to start his night time routine a bit early
(in the chair with Daddy under his favorite blanket)

So, allright. *deep breath*  He settles in a bit.  He was tired, we reasoned.  Big day walking around his sisters track meet.

Then, we see it.
If you don’t know what to look for, you might just think he was thinking about something he liked.
He smiled.
A big, crooked grin.
Or, as we in the epilepsy biz call it : the ictal smile.

It didn’t last too long.  It also included a few head nods, a blank look.
But 5 seconds can seem like 5 minutes when you are waiting it out.

It passed.  His body relaxed.  He snuggled in to Clay.
Clay asked: “Hey, buddy, did you have a seizure?”
Jackson replied, “seizure”.

We sat there with him for a few moments.  And waited.   Then waited some more.
If you have ever experienced any type of seizure, then you know it leaves you feeling…
Vulnerable.

A few deeps breaths, the realization that THAT was it.

Jackson’s mood returned to normal.  He was not wore out like other seizures.
He played with his sheep, he laughed.  He asked for things.

And then back to our regularly scheduled night.

In the great grand grand scheme of things, it wasn’t that big of a deal.
Just one of Jack’s  smaller quakes, possibly relieving some deep seated tension.

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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