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!