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.

 

 

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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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Other Choices

Other Choices

I’ve been busy.
Really, really, busy. I have been, as the kids today would say: ALL THE BUSY.

Looking back it’s been two and a half months since I last blogged. It’s not for lack of things to say, but lack of time that kept me away.

I work.  I am a mother.  I am a wife.  I am a “maniacal crafter”  and I sell my things (shameless plug).
I have friends I like to visit with. I have obligations.  I have places to go and people to see.
I have the occasional headache or ailment.  I have appointments.  I have stress.  I have housework.
You get the idea.
What I am trying to say is:  Life is full.

And so, the other day I was  scrolling through Facebook I saw a meme that left me laughing.  It left me laughing hard and gave me the resolve to dust off the blog .  The meme was from the good people over at Autism Hippie.  I immediately shared it over at Jack’s page.


It was this little gem:

Brilliant!

Brilliant!

Look at that.  No overly sentimental photo.  No cutesy pie pic. No vintage graphic.
Just those amazing words.

You see, special needs parents get this a lot.
HOW do you do it!?!

Do what?
Love our kids? Do what is necessary to see that they are healthy and happy? Make them a priority?
BE A LOVING AND CARING PERSON?

Make no mistake….I am aware that other parents get this.  A friend of mine has a set of triplets.  HE can tell you stories as well!

But I digress.  I am Jackson’s mama. I am Darrah’s mama. That’s some serious committment right there.
What other choice DO I have? When the going gets rough I cannot just up and leave. It’s not like I could pack up and move cross-country on a whim to escape it all.  It’s not like I could move to an ashram to navel gaze and find myself.
No.  That’s just silly.  You just pull on your  big girl panties and greet the day with love, joy, compassion, and a huge cup of coffee. Day after day after day.
You just DO.
There is no other option.
And since that is the case, I say — enjoy the hell out of it.
Enjoy the chaos, the clutter, the messy, and the struggle.
It’s what we are here for.  It’s what life is all about– putting yourself out there and greeting the day with courage no matter what.

You know who taught me that?
Jackson.
Make no mistake, life is not easy for the boy.  He’s got this whole brain tumors/autism/seizure thing going on and yet he gets up day after day with a smile on his face ready to greet the day.
He struggles, he fails.
He struggles, he succeeds.
He goes on no matter what, with joy in his heart.

How does he do it?
I am not sure he is aware that there is any other option.
And neither am I.
Jack and I?
We’re on the same page.

On the same page and on the same pillow, too

On the same page and on the same pillow, too

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

 

 

 

 

Out of the closet…….

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an 11 year old “sparking up” , let me assure it is nothing like that.
Jackson takes a dropperfull  of a non alcohol based tincture in the morning and a product called Rick Simpson oil (also known as “Phoenix tears”) in the evening.
Neither of these products have a psychotropic effect.
Let me repeat that:
They do NOT have a psychotropic effect.  That is to say: Jackson is NOT getting “stoned”.
There is no “head change”.

These are carefully crafted MEDICINES that have proved radical in Jackson’s treatment for his seizures, his TSC, and his joint pain.

The process is above board and on the up and up.
The dispensary where we choose to purchase Jack’s medicine is safe, friendly and……INCREDIBLY KNOWLEDGABLE about their products.

We live in Humboldt County which is widely regarded as the stoner capital/pot growing mecca of the United States.   However, we are not alone in the medical marijuana movement.

Check out what is happening in Colorado- with the Realm of Caring – and their specially crafted strain known as “Charlotte’s Web” that is showing amazing progress in the treatment of seizures.

Georgia is next.
Fingers crossed.
Check out what is happening there through Connor and his mommy

It’s happening, people.
It’s slowly happening, but it IS happening, and lives are being saved and being made BETTER with the use of medical marijuana.
I’ve seen it.
I’ve felt it.
And I stand solidly behind those that are fighting for the legalization of medical use of the cannabis plant.

Still with me?
Does it change the way you see Captain Jacktastic?
Are you appalled?  Surprised?

We are still who we are.
And we continue to fight the good fight.

Poetry readings

Poetry has always had a high priority in my reading life. In my teens I discovered major poets and also some that were rather obscure. I read with a thirst.  Words came alive to me.  Some poems,  like Burroughs’ Waiting have stayed with me since my first discovery in my teens.  I often reread it and find more to it.  More depth. And an even stronger connection to it.
I have passed this poem on to my daughter too– hoping that it will resonate with her.

Ah.  My 13-year-old daughter.  An exquisite creature who is off beat, and takes life on her own terms.
If poetry was humanized, SHE would be free verse, spoken word.  Vital.  Vibrant.  Off in all kinds of directions.

But THIS is a blog about Jack, isn’t it?

Jack who I lay next to each night as he falls asleep …….
Once Jack falls asleep, I text my husband to let him know all is well in the back bedroom and I will be out shortly.
About a week ago, in a playful mood, I decided to write a haiku rather than texting:
“Boy asleep, out in a mo”
A haiku.
5-7-5 syllable structure
It went

Softly sounds of sleep
Permeate the dark room
Jack at peace for now

I was quite pleased with my cleverness.
And so the next night I repeated the idea:

The boy snores soundly
Exhausted from being Jack
The good kind of tired

And so, being a dork, I decided to finish out the week the same way
(I am NOTHING if not a creature of habit!)

The boy sound asleep
Dreams of things that we cannot
Sleep sweet dreams, Jackson

He speaks of his day
The trees,the spinnings,  daddy
His mind is a book.

The boy falls asleep
Without a sound or a fuss
Dreams of Darrah’s room.

Daddy’s arms are strong
The best place to fall asleep
Jackson loves Daddy

Then last night, it hit me…….
Jackson IS haiku.

Jackson is haiku
He is a steady rhythm
Compactness of words

Jackson IS haiku
he’s juxtaposed elements
spare and raw beauty

Jackson IS haiku
he’s deceptively simple
yet years to master

Ask any parent of a special needs child:
There is poetry in their very existence.
Sometimes it’s Ginsberg’s HOWL.
Sometimes it’s the very structured iambic pentameter of Shakespeare.
Sometimes it’s the be-bop cool of Langston Hughes.
And sometimes it’s all their own- defying any box or parameters.

I invite you to keep your eyes, ears and heart open for the random poetry readings that may occur in your life.

photoJack3

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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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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