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.

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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.

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.

Another Dad’s Perspective

If you know me, then you know I take pride in the fact that I am a geek.
And to that end, my husband and I are big fans of THE NERDIST.

Imagine our surprise one night when we watched an episode that included a comedian that discussed………HIS AUTISTIC SON

We sat there.  We laughed.  We got it.
Then I immediately hit the internet for any other information I coud find on him.
What I found was a man that was thoughtful, friendly, and wickedly funny.

So being the straight forward agressive Jersey girl that I am, I asked him if he would consider being a guest blogger for me.
To my everlasting astonishment and delight, he said yes.

Ladies and gentlemen, I am pleased to present to you the one, the only,
Mr. Ron Funches……..

I remember the day my son Malcolm was diagnosed with autism. His mother and I had spent the better part of the first two years of his life wondering if it was normal for a baby to sleep three hours a day while spending the rest of his day rewinding his favorite sentence oh his Jungle Book DVD. There was a period of time where I assumed he was deaf, as calling his name would lead to blank stares and dropping a phone book behind him would illicit no reaction. But how could that be when singing the Elmo’s World theme song would cause his head to whip around and a huge smile to come on his face? We had no idea what was wrong and that is the scariest thing that I believe can happen to a parent, knowing something is wrong and having no clue what it could be.

Autism wasn’t even a word in my vocabulary. When my mother suggested we have him screened for it I lashed out. I said there was nothing wrong with him and he was just a weird kid just like his father.  I was afraid that my son would spend his formative years in special-ed classes.  I remember them from my high school- tucked away as to not offend the so called normal students. Let out after we finished our lunches to clean up after us and learn so called “life skills”.

I didn’t want that for my son.

I thought Malcolm’s Autism Diagnosis was the end of the world. My son would never go to college, never become a All-Star NBA player, maybe never even move out of his parents home. I was also told things he may never do. Talk, go to the bathroom by himself, get himself dressed. I fell into a depression.

Till one visit to a local playground changed everything. Our visits to the park looked a little different than most. The two adults circling the perimeter of the playground knowing that our son was prone to take off running into the streets at any given moment. I remember the stares from the other parents and the “why don’t you just relax and let him play” comments from people not knowing if I did sit for 5 minutes odds are he would be two towns away before I even noticed. This day was different. The park was empty except for a group of disabled adults and their caretakers across the field. That day is etched in my memory and has motivated every career decision I make. I am sure there are great, empathetic, caring, caretakers in the world, probably a bunch, but these were not them. They way they yelled at them, the way they mocked the noises the disabled adults made. You know the noise. the one everyone makes when they pretend to be retarded (please stop doing that). The way they treated them more like pets than human beings who deserve respect. I knew that day I needed to make a lot of money. Enough so that when I die and his mother die that he would never have to see one of these facilities. That was the day I knew I either had to go back to college or follow a dormant dream I had. If it wasn’t for those mean people I don’t think I would have pursued comedy with the determination and effort that I have. I  was shown a possible future that I wanted no part of for my son and I continue to work hard to make sure it never happens. So if you see me shilling some product in a commercial I don’t care about, you know why.

The best lessons I’ve received in life have been due to my son. Not setting expectations, but never giving up, knowing anything is possible. Being yourself no matter what. After years of therapy Malcolm is now quick to say  “ I love you” or “ Bacon and Bread sandwich at Subway” or “What da fuck” all at appropriate times. He now wouldn’t be caught dead in the same bathroom as his dad and besides some trouble with his skinny jeans can generally dress himself. He is my best friend. He’s my Apple Jack and I’m his Cinna mon. He taught me and continues to teach me so much. How talking is overrated, how  so many things in this world don’t  make sense if you look at it from a different angle.

I am blessed to know him. He woke me up and set me on the right path.

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Thank you sir for your words and your perspective.
And that is one handsome guy you got there.
Takes after his dad, huh?

 

 

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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You DON’T know Jack

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

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

 

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

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

Every day is journey.  Every day is discovery.

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

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

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

Did YOU know……

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

Did YOU know……

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

Did YOU know……

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

Did YOU know……

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

and speaking of seizures…….

Did YOU know…..

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

Did YOU know……

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

Did YOU know…..

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

And lastly ,
DID YOU KNOW…….

I wouldn’t trade it for the world?

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

Of small and large blessings.

Of what’s truly important.

Of what the true meaning of love is.

Of what real compassion is on a daily basis.

And I would not have it any other way.

For your consideration…..

I am most honored to be a guest blogger over at
FIND MY EYES.  This is a stay at home dad with an autistic son named Jack.
Hmmmmmm THAT sounds familiar!

This month he focused on AUTISM AWARENESS month with a bunch of different perspectives.

I highly suggest following this fabulous writer and his journey!
In the mean time, not only check out MY perspective, but many other guest bloggers as well.
Theres a light of light shinnging over there!

Are you for real?

I recently saw an article ON FaceBook ABOUT FaceBook and how FaceBook  may distort our image of others and even ourselves.
“See?! Everything is lovely! My kids are beautiful!  My Instagram pics of my food are awesome! I do AMAZING , FABulous things!”

C’mon.  We ALL do it.
I mean, I am a pretty positive upbeat person, so I try not to be negative on FB.  Or this blog.  But I would like to think that I am fairly realistic.

But I thought about it.
And to be honest–
I, too, am guilty of gilding the lily.
I am guilty of the not telling the truth by omission.
I let all of you see here  (and on the Captain Jacktastic Facebook page) just how wonderful it is to live with Jack and learn from him
And while all of that IS true…

It also ain’t easy.

I don’t tell you about the tantrums.
I don’t speak of the head banging when he is not happy about not getting his way.
I dare not whisper about the hardship when he doesn’t want to eat  (he stamps his feet so quickly I refer to it as Flamenco Dancing!)
I leave out having to do things in a specific order so as not to antagonize.  I omit the time it takes to care for Jack.
I don’t want to bitch and moan about how EVERYTHING we do is about teaching.
I don’t want to discuss that Clay and I get very little grownup time together. (three hours! EVERY Thursday night! Good Lord willin’ and the respite worker don’t cancel!)
Then there is keeping up on all meds, tracking seizures when they happen,scheduling and keeping appointments at a clinic and hospital five hours away, researching new things about TSC, making sure Darrah feels loved and not pushed aside, work, regular family stuff like bills and shopping, oh and house cleaning takes on an extra added dimension when you live with Jack as toys get thrown EVERYWHERE, and extra clothes washing when there is a pee thru and making sure that there are enough chips in the house, and …………..

 

the list could go on.

and on.

But what good would that do?
Even is you are not a special needs parent., you know its rough- at least  intellectually.
I am not looking for pity or sympathy.
I am here to demystify.  I am here to educate. I am here to advocate.
AND
most importantly

I am here to see the silver lining–
to see the world through Jack’s eyes.
to be unafraid– like Jack
to be brave– like Jack
to put a different spin on this “lifestyle”.

I share the joy, the positive, the light, the beautiful moments, and the GOOD
because
in the end?
THAT is what truly matters…..
not what I don’t get
or don’t have
or what I may be missing.

Because from where I am standing?
THAT’S what makes my life worth living

and I’ll share that anywhere.

Effortless Doing

Maybe I haven’t made this clear to you:
I love Jack.
I love Jack differently than I have ever loved anyone or anything before.
I can see you shaking your head…..”well, DUH!” you are saying to yourself, “of course!”

But

it’s not that simple.

This is not to say that I love Jack BETTER than I love anyone else.
I have a daughter that I gave birth to and she gave me purpose in life.  She healed my wounded heart just by her presence and who she is becoming.  She is her own creature.  She is beautiful.  She is compassionate.  She is kind,  She is fierce.  OH! Sure, she can be a pill and then some.  After all, she IS 12 and adolescence is not easy on ANYone involved.

But Jack……we have a different relationship.  Yes.  I take on the Mama role.  Yes, I AM a caretaker, nursemaid, autism whisperer, respite worker,  behaviorist and one on one aid all rolled into one.

But here is something else I am:
STUDENT.

Make no doubt about it.
Jack is my little zen master.
I have a tendency to barrel through life.  I am ever fueled by caffeine buzzing at a high frequency, trying to get 12 hours of work, cleaning, crafting, family time, etc into 8 hours time.  Sleep?  THAT’S for ametuers.  There is STUFF to be done! Let’s go! Multi-task! Chop Chop!! Mach Schnell! GO GO GO!!

And while people are amazed at what I get done…. I lose a lot.  The daily nuances of life.  The tightening of jelly jar lid.   The shutting of cabinets.  The details.

Jack has helped me to amend my ways.
To get me to slow down and be on Jack time.
Jack doesn’t stress about time.
Time is not a Jack construct.  You want to spend four hours standing at the fence taking apart a giant fuzzball to watch the tiny pieces of fuzz blow away in the wind in a random pattern?  Go for it.
All you have to do is breathe.

So.  I stop and I sit with Jack.  I LOOK at what he is looking at.  I try to see it as he does.
And you know, often times I am surprised by what I see……. A shadow.  A line.  A cloud formation.  The sky.
Have any of you really REALLY looked at the sky lately?  AND took it in with awe and innocence?
I highly recommend it.
You could argue that Jack has the luxury of this because of his “situation”– the brain damage,  the autism, the TSC.
And you would be correct.
But you would also be wrong.
Because Jack does too have a choice.
And Jack embraces that beauty.
Jack finds that joy.
Jack has mastered the art of  effortless being.

In the Tao of Pooh, while I run around being a bit of Rabbit (too busy, too thinking) and Clay represents Owl (knowledge is all)
Jack is our Pooh.
He is.
Rather, he IS.

And that is where my love for Jack differs from anyone else I have ever loved.
Jacks love is who he is.
It is his smile given.

It just is.  
He has no hidden agenda, no pretenses.
He is who he is.  And who he is pretty darn easy to love.

(deep breath in aaaaaaaaaaaaaaaaaaaand out)  ❤