November 26, 2002

November 26th, 2002

I have told "my" story hundreds of times.
It has been published and talked about. 
The entire story though, has been kept deep inside my ultra crazy mind. 
Not certain what the world needs to hear-or wants to hear for that matter.
We all have a story. One that can beat the next.
One tear that stings worse than another.
A memory so vivid in a technicolor dimension that is too bright at times to surface.
Some have a pain.
A jagged edge buried deep into their flesh.
Stinging like an open wound when the memory is provoked.
I have my story and I think it's time to set it free.
I can no longer carry it alone.
I shall set it free like the caged doves at the wedding of your dreams.

It was my 5th pregnancy. (6th to be truthful, 4th month miscarriage)
Praying for that girl- Mackenzie Rae.
She was my surprise.


I was 'older'.
37 to be exact.


(not one word...)

A 'high risk' pregnancy they labeled me.

Never gave it much thought.

Never cared for labels.
Dismissed in my many scattered daily thoughts.

Many ultra sounds ahead of my months.

Fantastic 3-D pictures of my little girl.

Who was I kidding.

I saw the boy, no denying...

My 4th son.

My pregnancy seemed to last a lifetime.

Growing larger than skin should bear, I was gigantic.

I had a feeling.
I kept it to myself for a long time.
Something felt different.
Something felt wrong.
I told my girlfriend.
I told her many times.
She smiled.
She listened and smiled my worries away.

9th month.
I made it.
No worries or concerns.
But alas, my son was breech.
I had never had a C-section before.
I was nervous.
No time for recovery when there are 4 little kids at home.
"Not gonna happen," at least that's what my husband said.
Dan went on the Internet to search for ways to turn a breech baby.
I wish this was all a made up little joke in my head, but I actually allowed Dan to put a bag of frozen peas on my unborn son head....

Hoping the aggravation would make the 10 lb. baby turn right side up in a womb of no room.

 

A Chinese herb was to be burned near my left toe...I was intrigued until Dan moved suddenly to the televisions football game's touchdown, burning my little digit.

But; before the Chinese herb nonsense, I had a procedure called a "version".
 Picture yourself laying on you back, while 2 adults stood above your mountainous belly. All in unison they push with all their might the outside of the babies unborn body.
The only shield was my taut, aching skin.
The pain was unmeasurable.
Tears flowed onto my cheeks like Niagara Falls.

It didn't work.
He was too big and too stuck into position.
My C-section was scheduled for November 26th.

The doctors had one more alternative. No one wanted me to be laid up.
Dishes, laundry, cooking needed to get done.
The doctors said that since I had delivered 4 babies vaginally (sorry), it was possible to deliver the breech baby normally as long as I would take the consequences.
This is yet again not a joke.
I was to make the choice.
Are you frigging kidding me?

The fear weighed on my mind like a knife stuck in my eye.
The choice of injuring my son or not was solely up to me?
Cut me the frick up.
No gambling here.
You have truly got to be kidding me.

November 26th, 2002..
Prepping for my first C-section.
Ready? Get set...
One last ultra sound.
Wanna check placement.
Holly gets one more chance to decide what to do...Risk the head getting stuck?
CUT ME OPEN.

The doctor waves around the cold jelly on my abdomen.
Silence.
A gasp.
MY SON had turned.
WTF.
Somewhere, sometime he got up, packed his bags and moved.
Jubilation filled the room.
A MIRACLE!
Chinese medicine miracle.
Or so they thought and they believed.
The med students poured in to take notes.

The janitor high fived me.
The party was intense and I was so proud of my little boy.

One, two, three pushes.
Damn she almost dropped him as he made his way into the universe with vengeance.

Silence.
No noise.
No cry.
Time stood still.
The room began to spin.
"Cry dammit, cry!!!!!!!!!!!!!!!!!!!"

Darkness fell upon my room.

I began to panic.
Dans gentle voice whispered in my ear,
"I think our son has Down Syndrome".

I went into shock.
Fear of the unknown consumed my every cell.
A hush in the room surrounded me.
The silence stood still.

Nothing.
No more jubilation.
No more high fives.
No eye contact.
No happiness.
Darkness.
I'm sorry.

Oh my God, my son must be dying.
Is he dead? I demanded?
Is he going to live? I screamed.

Moments felt like hours.


I was scared to hold him.

I am ashamed.

They were sorry.
He must be a fright.
There must be a mutation.
Fear consumed me as the silence grew deafening.
He must be a monster.
Why else would they say they were sorry?

I held my little boy Nathaniel; "A gift from God."
He was perfect.
Complete perfection.

10 fingers, 10 toes.

My journey begins.



He smelled like my son.
The softness of his delicate, peach covered face was as gentle as a miracle.
His lips were drawn by Picasso.
His fingers were the beginning to great writings,
His toes were the beginning to his amazing life.

I remember with clarity.

"I will never let you go, I will protect you from everything and everyone in harms way, I will be your everything.  No one will ever hurt you, I love you my son.
I love you."


I don't know how the lioness knows.  But she does.
Instinct.

He was rushed away.
It was different.
It was cold,
frightening and bleak.

We cried.
Dan and I cried rivers.
Not ever certain why we cried.
I suppose we were invited into the mourning.


The following day, I went down to visit Nathaniel in the NICU.
My doctor happened to be on the elevator.
"I'm sorry Holly, I wish there was something I could have done."

HUH?

What the F*CK?

Nathaniel was not injured, not an accident..I didn't do anything wrong neither did you...
Or did I?


Did I eat something wrong?
Bump my belly too hard?

I can go on for days.

But no one had any answers.
No one looked at me.

In the first few days I learned that Nate was "different."

"Slower, delayed, maybe won't ever talk, maybe won't walk, may never eat by mouth...."
"He can always be a bagger at Jewel".
"God only gives you what you can handle".

SHUT UP.

How I desperately wanted to be talked to like a new mom.
A mom that just delivered a baby.
A beautiful gift from God.

We still cried.
The tubes, the feedings the fears were consuming.

It was all we could do just to breathe.

No one smiled at me...Can you imagine?
I was that Mom in room 414, enter with caution...

Until my Mom walked in.
Dan and I were holding Nathaniel.
Crying.
My Mom asked "Why are you crying?"
"Because our son has Down Syndrome Mom."
"So WHAT", she said tenderly yet strong.
"He is alive isn't he?"

Indeed, he was alive.
And I would do whatever I could to make that life spectacular.
I surely did get my gift that day.

An endless gift of learning, accepting, challenges, fears, doctors, teachers, understanding, crying, and awareness.

But one thing I have always had.
LOVE.


This is a tough ride.
You cant just hop off when you want to.
Sleepless nights, anxiety, fears....still consume my soul.

But one thing that remains louder than the rest?

MY son was born on November 26th 2002.

Nathaniel Joseph Simon.

The love of my life.
The love of many lives.

He is here.
Teaching others how to love.
With a smile, a hug a warm hello.
That's my son.
'He never became what the doctors thought he would be.

He became Nate.
Nate the Great.

 

A teacher among lost souls.
Spreading humor around every corner.

When we were in the middle of our private hell, people would always ask me "How do I do it?  How can I always have a smile on my face?"
I often wondered what my alternative would be.

To hide, to run, to set the bar low and accept the sadness?

No way Jose.

I'm a big girl and I put my big girl panties on a long time ago.

He is NOT a number.
He is NOT Down Syndrome.

He is NOT retarded.

He is NOT different.
He is NOT to be laughed at.
He is NOT to be made fun of.
He is NOT to be ashamed of.
He is NOT to be thought less than.
He is NOT to be ignored.
He is NOT to be forgotten.

He is Nate.

I thank God for November 26th 2002.

I wish you all could have a day like mine.




So now you all understand.
Why I fight this fight.
 Do the things I do, dare to demand a difference.
I should have celebrated my magical little boy.
 Instead I was invited into the darkness. I did not chose to go there.  I was robbed of Nate's celebration.
But why?
Who became the judge and jury?
Lets all accept.
Appreciate.
Love.
And listen.
We all have a story.

This should have been my choice.
Let us finally live in a land of harmony.
For all children.
The pink, the polka dots and the bent.
Love each other with vengeance.

Until that day I will continue to educate and bring the joy back into the delivery room.

Its our own decision how to handle the deck God hands us.....
Please do not say your sorry.
There is absolutely nothing to be sorry about!

A MUST read....

Get ready, because I am about to open up my can of whoop ass.

I am so mad,
I am so disgusted,
sad,
afraid,
and unsure of humanity.

My oldest son went with his friends this weekend to visit a College on his bucket list. It was a fun filled weekend full of girls, boys, laughter, no sleep and probably alcohol.

I am hopefully not too naive on the goings on in College life. I never did go. 
Beauty school and a bit of a Junior College was enough for me. But visiting and listening to wild stories has always filled my void.

My, just out of diapers son, Nick who is a mere 17 frolicked among the ivy league, pretending he was the College stud.  He and his buddies welcomed themselves into a gigantic animal house style party.  My son said it was mobbed, shoulder to shoulder. A setting that is often found on the big screen. The party you just cannot miss.

As my son entered the front door he ran into a neighborhood friend and they began to chat a bit.  Within minutes a GIGANTIC young football player was ready to leave the party. 
With his girlfriend in tow, the enormously muscular young man pushed through the crowd yelling, "Move the F#*K out"!!!! Someone near by muttered, "Whats with the Beef Head?"

The gigantic young mans ever so darling girlfriend heard the words and immediately told her boyfriend.

Testosterone, muscles, upbringing, television, video games, and our nasty world stirred in the head of the not so pleasant tough guy.
He grabbed the nearest kid, who happened to be the friend of my sons from our hood. 
He summoned this boy into the kitchen that was over crowded with onlookers.
He MADE the young man get onto his knees, and in front of his peers he nailed with vengeance powerful blows to this innocent boys face.

I think the bile in my throat reached an all time high just from the belittling of summoning him onto his knees.
The visual still haunts me.
Yes, the crown was dead silent. My son quaking in his boots. Afraid to sneeze, let alone barely breathe.

Silence, no one said a word. The fear was deafening.

WHO RAISED THAT BOY?
Did we?

How does this happen?
How was this type of hatred not noticed years ago?

Get on your knees as if I am Superior? OH MY GOD.

The story and a million stories get worse.  My daughter proceeded to tell me that back in her day, if a young boy was feminine the punishment would be the same.  Maybe worse.
A child with a speech impediment, YEP fair game?

I cannot get the visual out of my mind.

I cannot get the red hatred out of my cornea.

The fear this boy must have had as he knelt down must have been immeasurable.

The crowd was silent.  I cannot blame them. They were next.

WHO RAISED THIS BOY?

Who watched as he worked diligently around the clock to form those massive muscles but did nothing on his character?
Who was his neighbor, his teacher, his friend, his solid foundation?
Where were we?

Pick on someone your own size?

Dear Lord, I am quivering. This wasn't just an isolated moment.
THIS IS OUR WORLD.

Please, please, please TALK to your kids, look them in the eye as you speak.
Speak loud and strong.
Hold them tight and shower them with the love and confidence they need.
Protect them from harms way and teach them to protect others.
TEACH them about differences.

TO ACCEPT.

I suppose I would like to spend 15 minutes alone in a locked room with the muscle heads father.
Yep- He learned this somewhere.

Did you parent him?

There is time to fix, and time to heal.

Please get down on your knees and TEACH.

It just has to get better than this.

Lucky

Funny thing,

(some how it always has to do with shoes.)

Us crazy writers seem to always write about the same thing.
Kinda like choosing a lipstick color or a pair of black comfy shoes.
No matter how daring you try to expand,
You seem to always choose the same damn shade of mauve.

So, here I go again.

Another feeble attempt to write about happiness.
To write about the word in order to find its purpose.

Its mystique to some,
and the drug that others just cannot get enough of.


Truly.
What makes you happy?
What makes you smile?
Does the smile fade quickly or does the feeling way deep inside of you like a fever?

We all teeter on the edge.
Daily.
Sometimes moment by moment.
How profound a single second can change your entire universe.
From on top of the hill to the swallows of darkness.

Damn,
those moments are scary and if you are not in one right now.
Consider yourself lucky.
Friggen blessed.

My happiness may not interest you.

It may seem as bizarre as a Pollack painting or as confusing as the Chinese language.

But I am.

Today.

Happy.

As my feet waiver above my carpet, morning floor I remind myself that I am entering a new day.

Full of endless possibilities.

I have absolutely no desire to exist.
Or to simply live.

The thought scares the shit out of me.

I must capture every ounce of happiness that the new day brings.
If not I believe that I have failed.
I have not squeezed all the juice out of that orange.

I did not carry the belief that in a moment it can change.

(ahhhh, happiness)

So daily,
I kick some ass.
I walk the walk,
try not to talk the talk.
I give and give big.
I love and I love deeply.
I am a friend, a listener, a sidekick and a believer.

Really?
What else is our choice?
Think about it....
Isn't happiness (as long as no real sadness or tragedy is among us)
Isn't it our daily choice?

The moments are our gifts.
Not a new thought process. Not new words. I'm certainly no Maya Angelou.

But how you decide to unwrap your gift is up to you and only you.

Today Natie and I went to breakfast. 
A young man walked in with his brother.

I was drawn to him.

Yes he was special.
In every way,
and in moments I realized how special his brother was.

The proud older brother went on to tell me how he picks his brother up every weekend to have donuts and go to church.
A wonderful routine.
When he smiled and said these words to me I was rendered speechless.

"This is exactly where I need to be, with my brother".

Wow- That was EXACTLY where I was suppose to be.
Meeting them.

In the afternoon I ran into the mall. As I was paying for my potions and lotions the lovely sales girl exclaimed "Oh my G-d it's Holly, a celebrity". As the entire store stared and the girl was squealing with delight, I thought I was on the 'punked' television show.

She continued with her story.
One full of a sad pregnancy.
Full of others ignorance and lack of compassion.
She was introduced to my blog and our website and she was gleaming with pride to be a member.
She instantly erased the stranger and became my friend.

There are times I am truly happy.
Unable to rub off.
Almost contagious.
Yes,
 a chocolate chip cookie, a kick ass pair of cowboy boots, a trip to Nordstroms and a warm kiss surely fit the bill.

But its in times like these.
I am reminded.

Happiness comes from within.
It bounces back from what you do and what you give.

Its not an object.
It just can't be bought.

So today I was exactly where I needed to be.

Surrounded by goodness and accepting of new friends.

How did I ever get so lucky?


www.iam-whoiam.com