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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Dream a little dream

As far back as I can remember I have been a very vivid dreamer.  I can still remember dreams that I had as a child in exquisite detail and feeling.
Some dreams leave me exhausted; others, exhilarated.
In my dream state problems get worked through, stress gets relieved, events get relived, and sometimes desires get fulfilled.

I recently had a dream about I child I had worked with and whose mother founded a local autism support group.

Caden is a ridiculously beautiful boy whose dx includes Fragile X Syndrome and autism.  (You can read more about him HERE as his mom has also guest blogged for me!)

In my dream a handsome young bespectacled man in a pinstripe Oxford clothe shirt approached me and asked me if I had ever worked in the PALS program.  ( an early intervention program here in Humboldt County.)  I replied that I did and he informed me that he was Caden, the little boy who used to sit and endlessly flip through pages of books.

At once the knowledge of how far this child had come and who he was now was like a huge weight lifted off my shoulders and the world in general.  In my dream I began to weep.  Tears flooded my face and my body was wracked with sobbing as I became overwhelmed with emotion.

From behind me I heard Clay and Jackson (also grown) laughing at me in a good-natured manner because I always get “so emotional”

I awoke from this dream with a renewed sense of passion and hope.  These children– ANY special needs child– need the constant hope of potential– the solid foundation of belief.  Our children need to be seen as unearthed treasures.  We need to forage and mine, dig and discover the beauty of who they are in this moment, as well as who they can grow to become.

It sounds so simple and chock full of common sense, doesn’t it?
But it’s not.
Routine can wear us down.
Setbacks can wear us down.
The sheer weight of what is needed to be there 100% day after day can wear us down.

So I invite you all to take a break.  Take a nap.
Regroup, recharge and rediscover that hope.
Focus on the beauty of the moment– the unique gifts and talents YOUR child possesses.

Dream of little Dream of beautiful future.

Do YOU see the fan?

I took Jack to the grocery store the other day.
We were out of chips.

This was not Jack’s first foray out of the house that day , so he was a wee bit cranky.
And, this was not one of his usual grocery stops– this was a different store.
But what I could I do?
We needed a specific brand of chips.   Autism parents, YOU know what I am talking about.

So we get into the store and start shopping — IMMEDIATELY Jack is enthralled by the huge row of ceiling fans in the store.
He is mesmerized and I am hard pressed to navigate the store with Jack because wherever we go he HAS to see the fan.

We finally make our way to the check out and Jack is beside himself with happiness as he has a perfect view of THE FAN!
And so he starts laughing and shouting
“I see the Faaaaaaaaaaaaaaaaaan!”
He stims a little.
Laughs.
Rocks a little.
Shouts once again: “Faaaaaaaan! I see the Fan!”

I am smiling.  Laughing.  And going about my business of putting the chips on the conveyor belt.
That is when I notice her.

Her.  The woman behind us in line.
She is doing every thing she can NOT to acknowledge us.  She is painstakingly looking away. Down.  Up.  Everywhere except in our vicinity– which is hard , because we are RIGHT NEXT TO HER. It is apparent that this is not what she bargained for when she came in to get her bread and milk.

Now I get that not everyone is comfortable being around special needs children OR adults.
I was not expecting her to become my BFF while we bonded over Jackson shouting FAN in the grocery store.

I realize that Jack and I threw a monkey wrench into her grocery shopping experience.

Which is too bad.
Because she was missing out on a little bit of happiness .

Had she actually peeked over at us she would have saw paroxysms of pure delight.
She could have shared some of that delight if only for a few seconds

Instead she did everything in her power to NOT see it.
Sheer delight and pure happiness was right there next to her and she turned away.

I invite you all to cast off expectations in the moment, to open your eyes to the world outside your comfort zone.
You may just find a bit happiness of your own.

Also?
We WILL smile back you.  I promise.

 

Destination: Hope

Today I turn my blog over to an extraordinary woman name Fatima.
She lives here in Eureka, with her husband, two boys, and two dogs she rarely has time to pet.She is extraordinary because she holds down a very grown up job (honestly…..she wears nice clothes and sits behind a desk in a fancy office……), she runs an amazing organization called FAANFamilies Advocating Autism Now that has sensory friendly movie events, gifts iPads to classrooms, and so much more.Oh yeah.  And she’s a special needs mom.
Heck.  I’m tired just reading her credentials.

I’ve been bugging her for a year or so to guest write for me.
The other day she posted about her son’s IEP and I thought: THIS is the one.  THIS is the story that needs to be told.
Why?
Because in all the autism / TSC groups I belong to– there are three letters that strike fear, terror, anger, and frustration into the hearts of special needs parents: IEP. Individual Education Plan.

THIS IEP had a happy ending.
THIS is a story of hope.
THIS is a story keeping you eye on the prize
AND?
It’s got pictures of her son, who I fell in love with when I work in the PALs program.
A little cutie patatootie sitting on the rug, flipping through pages of a book with his effervescent smile and indomitable spirit.

Readers?
May I introduce to you,
the lovely Fatima…..
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To do a guest blog or not to do a guest blog?
My goal in the beginning  of writing this was to be witty and sound semi-  intelligent, now I just want to get through it without losing my dinner. 🙂

My amazing son, Caden was diagnosed with Fragile X Syndrome at the age of one and Autism at the age of two.  He has a wonderful little brother, Tate that was diagnosed with Fragile X at the super young age of 3 months.  The road has been windy, long, scary and has had so many twists and  turns that I have wanted to get off it many times.

 The light at the end of the tunnel must not have been in service during the first 2 years ofCaden’s diagnosis. (or so we thought)

Now fast forward at least 5 years…. Caden is 8 and I can see all that he has to offer to his family, his friends, and…..
THE WORLD.
This kids is destined for greatness…..
Today was a big day for our family.
We had an IEP (individualized education plan)  meeting for Caden to be fully mainstreamed in the Fall at Washington Elementary. For those of you that don’t know what that means– Caden will be in the regular ed classroom for the day, with necessary breaks, etc., as needed.   Currently, he is in special day and is mainstreamed.You couldn’t have told me a year ago that this day would come. Not because I didn’t believe in Caden, but because I didn’t know how many roadblocks we would be up against.
 His very first IEP was with 22 people in a large conference room with the air conditioner on in January of 2009.  Who the heck needs an air conditioner in Humboldt County?  We were nervous, uncomfortable and freezing our asses off.  All we wanted to do was to make sure our son received the best possible education.
Easy? Not so much!
Three hours later, my husband and I walked out of there dumbfounded.  What the heck had just happened?  Yes, Caden had received the services that we requested, but there was so much red tape, so many unsmiling faces, just so much.. SHIT.    It was a sad day, and I remember crying for a long time that night dreaming of what our future was going to look like.
Fight after fight.   Could we handle this? Were we equipped to handle it?  Did I really even want to handle this?My, how things have changed…..In this IEP meeting we discussed Caden’s growth and also the challenges that he will face. But, as a TEAM (yes, a real team) we decided that mainstreaming him is in his very best interest. By the end of the meeting, most of us all were in tears.

Happy tears.
Caden’s aide (not a worthy name for her at all) is truly amazing and she knows when he needs her support and when he can “fly” on his own. Caden’s 2nd grade teacher has truly shown our family what I can expect for him. She has paved the way for Caden to excel in anything he chooses to do. His classmates are amazing and I will thank his teacher for the rest of her life for showing them how to accept/love/share/cherish  Caden as their friend. The sky is the limit for him and we are so blessed that we have a school that will support Caden in being the best student he can be.
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” Maya Angelou
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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.

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.

Terms of……..endearment

Facebook has a power.
It lets us stalk.  It lets us get in touch with our past.
And it reminds  us– in some cases– who we were.  And maybe…..still are.

I am a graduate of Hunterdon Central High School in Flemington, NJ– Class of 1982.
Unlike many people– high school was a haven for me.  It was a blissful place where I could be who I was.
I was a geeky, weird theater person with a hunger for books and a longing for something “more”.
We had a very large theater department.  AND believe it or not– a community radio station.  It was there, in my freshman year, that I met a graduating senior by the name of Jeff McQuinn.  Long haired hippie stoner dude with a killer smile and a gentle spirit.
My friend Sandy had a hella crush on him.  She refered to him as “Jeffie” McQuinn.
What I remember most about him is a story he once told about playing darts in a bar.  In order to psyche out his opponent, he stuck his darts in his artificial leg.  That story reverberated with me then and now.   It’s a touchstone for me– a “f*&K you, I’m stronger than you think I am.  I’ve got this “thing”” but it doesn’t bother me”.
Embracing a perceived weakness as a strength.

oh.  wait. Did I forget to mention that Jeff had an artificial leg?
Yeah.
He did.

He recently came across my Facebook radar and I told him about  always remembering that story.  And we chatted about this blog and where life leads us.
He discussed how his handicap……

woah woah woah…..wait.  Hold on a minute.
I had to stop.
Handicap? Disability?
What? I’m talking about Jeff McQuinn! He doesn’t have a “HANDICAP”!!  He’s not “disabled”!!

oh wait.  He only has one leg. I guess he does.

Seriously.  I had to pull myself up short.
It never occurred to me.  He was just Jeff: Long haired hippie stoner dude with a killer smile and a gentle spirit.

I am long past thinking of people in terms of handicapped, disabled, autistic, neurotypical, cognitively aware, etc.

I realize that I think of people in terms of……..
people.

Who they are.  What they do.  What they bring to the table.

Perhaps I am being a tad insensitive.  Perhaps you think I am making light of those that struggle with a physical disability.
But I assure you, I am not.
I don’t like to define people at all.

You ask me which child is mine in Pat’s class.
Do I say: “He’s the autistic child with tumors in his brain and epilepsy”?
No, I would tell you that he’s the blue eyed, dark hair boy with the sly grin and great laugh.
You ask me who was Jeff McQuinn in high school.
Do I say: “He was the guy with one leg”?
No, I would say he was that long haired guy Sandy had the crush on.

The next time that you have to describe somebody to another person– listen closely to your language.
Think in terms of their heart, in terms of their deeds, in terms of their worth.
The terms autistic, disabled, handicapped, cognitively impaired , etc DO have their place.
But so do the terms
sweet, kind, talented, righteous, courageous, blue eyed, freckled, funny, etc etc.

Think in terms of  endearment.

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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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.