Just dance, damnit.

Gene Siskal I am not.

 But I do enjoy a good movie.  I am the nut that sings along and even chair dances if the time is right. I am usually the first one tearing up and the last one to leave. I love going to the cinema.  Its one of my mini 'vacations'.  Two solid hours with no interruption. Greasy popcorn and stale licorice fill my void.  I can go alone.  A mystery that kills my children and even some of my friends.  My kids feel sorry for me.  My friends think I look like a weirdo.  Maybe it takes years of self confidence to not care. Or maybe I am just a rebel-hahah.  I would rather go alone than share my popcorn any day.

I had the pleasure to see 'New Years Eve' with my newly 18 year old daughter.  It has become a birthday tradition to see a show together on her big day.  We have enjoyed the hours and also trudged  though some. Memories of the worst movies of all time  have been instilled in our minds.  From the absolute worst, Pinocchio.  To a various array of Adam Sandler, trying to be remotely  funny.

'New Years Eve' started with a bang. At least 30 big celebs brightened the screen.  A young heart throb, Zack Efron was in rare form as my daughter spontaneously erupted.  Yowza.  They didn't make boys like that when I was her age. Inappropriate to swoon over such a youngen?  I will keep my newly, probably jail bate crush to myself. Confessing such a thing just might make my daughter vomit then commit me.

Sometimes it takes the entire 2 hours to get the point.  Fluffy, good looking, great voices and even a bit of chair dancing on my part.  Finally the last 5 minutes were before us. I was about to bid a fond farewell to a few of my new pretend boyfriends (Fergie's hubby-holy guacamole).  Bam. I got it.  I heard you.  Message delivered.

'New Years Eve'.  Yes Virginia it really is just another night. 
But there is truly a vibe  in the air.  A thickness to the ozone  that creeps into even the largest sinic. A chance for a fresh start.  A new beginning full of great hope.  A chance to do better.  To get it right. Open a closed door. A fresh opportunity to make your wishes a reality.  A single moment in time that is felt all around the world. A new day awaits. A new time.  A new year.

Leave yesterday where it belongs.  Behind you.
You just can't go back.
Take a chance for a better, bigger and brighter tomorrow. (throw in a little glitter if you choose.)
Shit will always get in the way. 
Bills will always accumulate.  Hard times will strike us all. Accidents will happen. Someone will get sick and a loved one will pass. We have no control. That's life.

I still believe.

You can choose the life that's worth living. A life full of singing, as if you know the words.  Dancing like you are Michael Jackson. Open up your heart to let in great love.  Laugh at yourself and learn from life's bumps.

Take the New Year on with great gusto. Give away more than you think you have. Smile to brighten the lonely. Embrace the challenge to make a difference.  Cuz at the very end, don't we all just want one more chance to get it right?

One more New Years eve.

I better start practicing my moves. 

 I'm going to go dancing.

 Maybe with a little glitter on the side.

Laughter

I know Nate came into our lives for a reason.  The obvious reasons are for love, gratitude, acceptance and loyalty.  He teaches us enormous life lessons daily.  He reminds us about what is important and what to focus on.  On some days he comes to us with such comedic skill that even the darkest days get brighter in a flash.

The other night I had the extreme pleasure of  taking all 5 of my children out for dinner.  Various ages (9,11,14.16.17)  have made that task an almost impossible feat.  But there we were sitting at at restaurant, together!  During these moments of amazement I try to slip in some motherly wisdom.  Hoping that they don't realize that its actually a pop quiz.  I take the opportunity to discuss high school dances.  The girl asks the boy kind.   I ask my teenage sons what they would say if a girl they did not want to go to the dance with asked them.  My Middle child responded first.  "I would say I have to think about it."   Okay, I was hoping for a "sure I will go". Reminding them of the courage it takes for a girl to even ask.  I suppose the Internet and such has built a safety net . Most of the fear is gone.  But the message must still be taught. My oldest son began to giggle.  Lord knows what he would say to that poor little frightened girl that just asked him to a dance, shaking in her boots. I'm trying here.

They seem to ponder the question. I want  them to focus on the heart and feelings of the young girl.  Come on boys.  Suck it up.  Say yes, have a good time. Dance.   The role will be reversed soon.  You may be the rejected one.  Ever think of that??

"She likes you.  Just as friends.  She just asked you to her dance."  What do you say? (Us women get this .  The hours spent talking with your friends, rehearsing how you would ask.  What you would say.  Ugh~ the memories are haunting)  There is  no room for rejection here. The entire class knows who you are asking. You're entire reputation rides on this answer.  My son holds the key to your self esteem.)   Maybe a tad melodramatic, but you get the point.

My children  sit in silence.  Looking at each other to see who will reply next.  They know what I want to hear.  But to be self thinkers is what I have taught. Tell me the truth. Be kind, be thoughtful.


Nate raises his hand. Looks around the table with a smirk from ear to ear.  He replies with a strong monotone response..  "I would tell her to shut up!"

Yowza.  Lesson not learned.

A good laugh was had.  Even shared with tables close by.  Breaking the tension is what Nate is good at.  I just hope and pray that they heard a little bit of my lecture.

After all it really is only a dance.

My night with Anthony

It really is getting crowded in here.  The voices are all starting to talk  at once. Mental illness?  Or maybe just the fantasy world I choose to live in!

I have no idea what first attracted me to Anthony Bourdain.  I must have been searching the tube when this tall, handsome man came across the airwaves.  Anthony (or as I like to refer to him as Tony)  is a chef.  A hard core culinary icon.  A drinker, thumb ring wearing, skinny, gray haired,  hard smoking, earring wearing, bad ass. He can swear with the best of them. He shuns society in his arrogant bravado. It was love at first sight. A real rebel. Right on the travel channel.

A friend had informed me that my dream man was coming to Chicago.  A one man show at the Chicago Theater. As the powers that be, a friend actually scored me 2 tickets.  Now the fear set in. What to wear.  I had plans  to  have dinner with Tony after the show.  How? Was not an option. I had mentioned this to every one in my path.  I was to meet Tony and be whisked away.  Joining him on a trip to Thailand to eat scrumptious cockroach eyeballs. (Gotta watch the show to understand that.)

I  met with one disturbing non-believer the day before my big event.  Not only did my friend not believe that I was going to see Anthony.  But he questioned "why would Anthony want to meet me"....?   Hmmmmm, game on.

Nine years ago when Nate entered this world, he was met with every negative known to mankind. The non believers where everywhere. Some thought  'he would not talk'. Some said 'he may not walk'.  The list is actually longer than Santa's wish log. Nathaniel taught me early on that setting the bar higher and higher is the only option. If it is reachable then it is possible. I can.  I will. Watch me.

Why wouldn't Anthony want to meet me?  I am a wonderful , giving, thoughtful, fun, adorable, intelligent, passionate, (a tad crazy) adorable mom of 5.  But most of all I am a person. Just like Tony. I may not be on television (soon though), or have written a book (Hello- I am a blog writer!).  But I am me. Someone worth knowing. At least I think so.

The one man show was okay.  Although my friend and I had no idea what he was actually talking about.  All I could think about was our meeting. Would he immediately want to be my friend?  Would he want  me to be on an episode?  Possibly run away with him and leave my hubby and 5 kids??  (really Hol, back to reality)
The one man show was over.  Time to make my move. (The voice was ringing loud in my ear. "Why would he want to meet you?")

It was raining (just like in the movies).  We went to the back Alley. Knocked on all  the doors. (did we think he would answer?)  A compassionate limo driver pointed  to the correct door to enter.  We were instantly  met by Bubba, the 300 lb security guard. For a moment I actually forgot that I was the middle aged mom of 5 children. I became a rock star (or at least a groupie).  My charm payed off and we were so close to my dream.  After a little smooth talking (fine, begging) we were escorted to Anthony's private party. Game on!

Holy Shit- There he was. My tall drink of water.  Right there. Waiting for me.  (Dan who?)  I was inside. The non believers are gonna kiss my tush.  Tony was surrounded by 'foodies'.  They were engaged by his stories. It was a intimate group of young and old.

Enter Holly.

I decided to bust the group up. Walk right in the circle like we were playing school yard  'break the chain'. "Hi Anthony, I'm Holly!"  He was mesmerized.  All truths. His face lit up like a Hanukkah bush.  He was all mine. (although my daughter thinks his expression was more a look of fear than true love.)  We chatted for awhile.  I am unsure if anything came out intelligible.

What made me think that running behind Anthony giving him bunny ears was a good idea?   I realized that I can do and go wherever I want.  Unfortunately, I left my mature self at home. I became a teenager. Laughing and giggling the entire night. The mere fact that I was there seemed to out weigh what I was there for. I did it.  Next the Rolling Stones.

Living in my crazy HollyWorld is an exciting  place to be. Anthony still calls.  Yet I never seem to be here when he does. I get subliminal messages through his show as he looks into the camera.  Its a perfect relationship.

Don't doubt me.
 Believe.
 Nothing is unreachable if you want it bad enough. Nate has taught me that. I am who I am and therefore worth knowing. No celebrity will intimidate me. I am a warrior mom.  One who is constantly setting the bar higher and higher.  Not only for Nate but for myself as well.

Anthony will be back. I am sure he remembers me. Why wouldn't he?

This little Jewish girl

"It's kinda fashionable to bring someone Jewish to a holiday party." "Maybe we could rent one"!

That just might be the funniest quote from a client, ever.  I laughed for hours. But then I stopped.

What if he wasn't kidding?

 We have become  a Nation so politically correct. Or at least most of us try.  The Jew jokes can be funny.  I suppose growing up in a predominantly Catholic neighborhood has taught me to have a bit thicker skin than most. Like most jokes, it depends on how it is said and by whom.  Lets not fool ourselves.  Words can hurt.  They cut very deep. They cannot be washed off or forgotten. They stay with you forever. A tattooed memory that at times pops up and tries to destroy your self worth. 

It took me a long time to accept that I am who I am.  Jewish or not. Purple, pink and some times full of glitter.  I cannot change my spots.  I don't want to change my thoughts. I am for the most part pretty happy living in my own, crazy, saggy, overly spray tanned skin.

Accept me for who I am.  Listen to my words if you want. But if you don't, no problem.  Just  leave me the heck alone.

  I was born as a German, Russian, Jewish ,green eyed girl.  That's my place. The card that I was dealt. What I chose to do with that was my choice. I could change my clothing.  Go from purple hair to blond in an hour. Be loud or meek. That is up to me. .But, I will always be, a Jewish, German and Russian, green eyed girl.
 I cannot say that living in a Catholic community as one of the  few Jews is easy.  I crave a good bagel once in awhile and my neighborhood's corned beef is no where near what I desire. But I like being different. I am defiantly not cut from the average cookie cutter. Being different can be a challenge. But its also a blessing in disguise.

Down Syndrome and Jewish.  Oh Lord.

Being Nate is like a medal of honor. He is a local super star. The mayor of Beverly. No Down Syndrome cookie cutter can be applied to any of our special children. They are as unique as each and every fallen snowflake.

The jokes are just not funny. No matter who says them.  Down Syndrome jokes are just plain ignorant. Jokes using the "R" word are disturbing.  I may not be able to change every ones opinion on whats politically correct or funny.  But if you think using the "R" word is humorous, then I can assure you , I have no place in my world for you.

Since when was calling someone a "retard" acceptable. My comments will be brief on this.. I have very little patience for ignorance.  I will not begin to tell you how many times in a day I hear a child (NOT MINE) or an adult refer to something or someone as retarded.  Jennifer Aniston on a talk show referred to her way of dressing as "retarded".  The list goes on and on.

Please take a minute to educate yourself.  Ban the "R" word.  Then remind your children, parents, friends and neighbors that it is just not acceptable.  Nathaniel HAS special needs.  But he is blue eyed, beautiful, talented, funny as hell , little boy!

Phew- got this one out of the way.

Be my guest with the Jewish jokes.  I can  handle them.

You have been forewarned in regards to the "R" jokes.  All bets are off on this one. This little South side Jewish girl is gonna' finish decking the hell out of her halls....But then she's gonna kick your ass.

Words hurt.

Just saying.

True Beauty

I have done many things in my life.  Taken many roads.  Turned the wrong way.  But somehow landed right here.

I began as a hairdresser.
 I worked in various salons.  Moved on to become manager. Then in my early 20's I landed a position with a leading hair color company.  I traveled the country . I stood on top of a huge stage and professed that I was a 'color specialist' and the audience should listen to me.
  I met amazing people. Stayed up too late  partying with the best. Ate at the finest restaurants. Always wore the latest fashions.  My company actually gave us money to buy all gray clothes. (Black was just so 'yesterday'!) I thought that the beauty business was the 'end all~ be all'.

My oldest daughter was 'discovered' by a friend of mine.
Lindsey did her first commercial at age 9. We had the bug.  The kind of ugly modeling virus.
Several of my children modeled for years. We have many toy boxes, magazine ads and news papers to show off to their own children someday. I too caught the bug.  After watching the photographers create their beauty I watched until I 'got it'.

Luke on the toy box!

I began a small photography business. I shot mostly children and teens. Now I was the judge of what was beautiful.   My photographs were used as  their composite cards for their agency.  Soon I was being asked to do family Christmas cards and I decided to back way out of that field.

I never left the beauty business. 
I have been working behind a chair for 30 years now.
 Can you imagine the stories I have heard? 
In time I will write about those. No worries,  I promise to keep names out .


Enter Nathaniel.

Can you imagine just having a baby and every word out of every ones mouth is  negative.
Every Doctor and nurse painted the picture of gloom ahead.
 It is daunting to just think about it.
The books we read were about the worst. About the deaths.  The illnesses. 
The can-nots and will- nots.
We shook in fear when anyone opened their mouth. Afraid of the ugliness that they were about to spew. 
He was not their idea of perfection.
Not their idea of beautiful.

But he was my beautiful.
He was my perfection.

 I would just look at Nate. I could only see a perfectly round, blue eyed, handsome little boy. 
Hmmm, maybe they were wrong.
Who said they were right?
Who made them the judge and jury of what is beautiful?
Perfect?
Worthy?
Who gave them that right?

I decided early on to throw the books away. 
To keep any one with a negative thought out of my life.
 Focus.
 I began to wonder about beauty.
 I was in the business for so long.
Was it really about height?  Great skin and long flowing hair?  Or could I really have it all wrong? 


Reality check.

Think about what is beautiful to you?

We all know that amazing looking Barbie doll.  Gorgeous at every angle.  Until she opens her mouth.  One that is filled with negativity and bile.

Her beauty diminishes in an instant.

We all know that beauty comes from within. Its a deep connection to the universe that makes you glow.
 A feeling of radiance that your beauty is infectious.
 Real beauty cannot be applied.
Years of teaching  people how to achieve great beauty.
 Years of watching card board perfection's  rejected by an agency has brought me right here.

Exactly where I should be.

 

Down Syndrome children are one of the most beautiful children in the world.

They may have an extra 21st  chromosome.
Maybe an imperfection here or there.

 But not in their hearts.

Nathaniel does not care what you look like.
 He could care less what you are wearing or if your hair is styled.
Nate never notices . 
But what he does notice is your light.
He notices that you said hello.
That you took the time to talk with him and share a giggle.
 That you shook  his hand and looked into his eyes.
He knows pure kindness. He will never ask your religion or your weight.
He does not care if you are black or white. 
He does not judge.


If I only knew then what I know now.
Nate is true beauty.

A moment at Borders

It was a year ago that Nate and I along with his older brother took a visit to our local Borders. Those were the days that Nathaniel said hello to EVERYONE. A simple trip anywhere would last hours as Nate was determined that even the shyest of new friends would say hello. I began to believe that a hello should always be met with another.  'You honestly believe that you are going to ignore me?' was probably on Nate's mind. 

So, like every other day Nate managed to say hello (usually followed by 'I'm Nate' and 'whats your name?')  to every single person that crossed his path. As we entered the  Border's elevator we were greeted by 2 ladies. A  bit of chit chat ensued between Nate and the women and then we were on our way. We hit the check out line shortly after. The 2 ladies from the elevator were right in front of us.   Nate now believes (and rightfully so) that these 2 women are his friends. He takes one lady by the hand and walks her to the next available cashier. He asks her what her name is. (although she told him already he will ask 300 times before he is satisfied)  He comes back in line and offers me an "I love you mom"....and the rest of the line begins to chime in.  "Where do you go to school?" a women asked. As quick as you can say hello the line of strangers were talking amongst each other.


The women from the elevator that Nate walked hand in hand to the register with came walking back to me. She spoke softly and directly into my eyes and said. "That boy is going to change the world."


A stream of tears began to trickle down my cheek.


Without a moments hesitation I replied "I know, He already has."


I looked back to see all shapes and sizes, all ages and colors talking together in line. It all started with a simple 'hello I'm Nate'.


That day changed my life.

I Believe.

They just don't get it..

You know how you love something so much you think everyone else does too.  Like the movie you saw that leaves you with an unforgettable feeling.  The book you just read that has taught you so much. The savoring of the most amazing bite of a freshly baked cookie. The radiance you feel when you smell the air after the first spring rain.  You stop to look at a single snowflake.  You are in awe of its perfection.  Its just so beautiful.  You allow your passions to slip into your soul. It glides you through rough days and lifts you up on others.

We all have our likes, our loves and our own passion. They enter our minds at  different times in our lives. With age it all begins to get clearer. What you once thought was important is now just thrown to the side.  With age comes wisdom. Oprah said we all have an "AH-HA" moment. The single moment when you GET it.

I wonder if you  remember when you received yours?  The kick in your pants that said  'it really doesn't matter who wins the football game'.  In my final moments will I even remember who played?

I have moments of clarity daily. I must remind myself to take a deep breath and enjoy. Life sometimes gets in the way. But if you can remember those moments, you are halfway there.

We all face yucky days. Horrible hours and unbearable minutes.  But trying to stay focused on what matters will help you through.

The other day a friend asked me "Why do I bother". Huh?  Bother with what?  Being nice to strangers?  (they often turn into wonderful friends).  Bother with being a loud cheerleader for Down Syndrome? (a moment spent with Nate will answer why I do that). Bother with living every moment to the fullest? ( I don't care for the alternative).

I am who I am.
Nothing more, nothing less. Yes, as my daughter often tells me "I ride the  crazy bus". I say, jump on board if you wish.  I promise to make it one hell of a ride. But if you feel the need to question "WHY", then I guess you will never get it. So I will have to leave you at the station and bid you a fond farewell.

To me a life without passion is a life without living.

Just saying.

One of my favorites.

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*     *     *

Stupid things people say:)

All of us moms have thought about writing a book.  A book on the dumbest things that have been said to you after your baby was born.  Okay, I get that people are nervous and they really are trying their best. But maybe we need an updated Emily Post version of what to say to a new mom of a Special Needs Child.

First and foremost what cracks me up is that people forget they are a child!  No matter what label you put on them. They are a little, tiny, beautiful, miraculous baby.
You can keep all of your sorrys  to yourself. We need support, love and an open ear. That's all. We can have our own pity party if we want one. No need for you to invite yourself!
We truly have no idea what we are doing. Taking one day at a time worked for me. Don't ask if you can help me, cuz I have no friggen idea what to do. Just help. Don't ask.
Here are a few of my favorites;

Are you sure he has Down Syndrome?
( gee really? We just guessed )

He really doesn't look like he has DS.
(ya- and you don't look like an idiot)

He looks so 'slight' maybe he will only have a little bit.
(omg , a little bit of what?) (hopefully not a little bit of your ignorance!)

He looks high functioning.
(really, cause you really can judge intelligence when they are 2 weeks old)

Maybe he will grow out of this.
( and you will grow out of being an absolute moron) (nope he has this wonderful label forever!!!)

Where will he live when he is older?
(well, my plan is that I am never going to die.So he will be with me. Stella to my Louise- my forever dance partner.)

He really only looks DS in his eyes.
(and once again YOU only look like an ass all over your face)  :)

I hear you can take vitamins so he can get rid of DS.
(I told God that if he lets Nathaniel live I will gladly accept anything he puts my way.)
Truth be told I would not take an offer to change him in any single solitary way. Nate is absolutely perfect.

He might be able to get a job someday.
(Yes, he is next in line for Mayor of Chicago)

Will he get married?
(maybe, if I can let him go for that long...ummm, probably not.)

Does he have feelings?
(Nataniel wakes up every day in a good mood. He may say bad words or get moody, but he rarely keeps that up. He only knows love. )

Does he know he has DS.
(I tell him he is special because he has an extra 21st chromosome.) He has no clue.

You may be sorry for my road, You may even thank god that you are not wearing my shoes. But from our side of the fence, we feel sorry for you.

We truly feel badly that you all cannot have Natie in your life. A constant force of goodness, laughter, 'I love you' and hugs.

So BAM, feel sorry for me. Because secret is, we have the BEST gift in the world and you don't.

Rough start

Nate was home.  The beginning is a blur. Fear of the unknown was all we woke up to. Nathaniel had his fair share of issues. That meant Dan and I quickly became specialists on everything from breathing, eating and muscle tone. We were surrounded by  feeding tubes, machines that monitored everything from his oxygen to his pulse.It would be a fair statement that I didn't sleep at all Nate's first year of life. I would keep him wrapped up tight, with his face touching mine. I was assured and at peace as long as I could smell the sweet smell of his breathing.

I slid into warrior mode very quickly. I spent hours, days, weeks and months in the Dr.'s office. I would demand that they call him Nathaniel and not refer to him as a Down Syndrome child. This is my son.
I still quiver from the memories. The bleak future that everyone painted out for him was sickening.  They shouted negatives from the roof top.  If  I had chosen to listen I would have been swallowed alive.  From the very beginning I chose.  Nathaniel will live his life to the fullest. No book, or statistic will ever define who he is.

The darkest days came when Nate was 2 months old.  I took him to see a Specialist about his breathing issues. Strangely Natie turned a bit blue in the waiting room. Its funny how I did not panic. It was hard to know which was a DS trait or just plain scary. The Doc took one look at him and dismissed my questions with a quick diagnosis. 'Sinus Infection'.  Really? Ok, if he says so.

By night, Nathaniel's body was limp. His was barely breathing. We called every Doc we knew. But they all referred back to the Sinus infection diagnosis. 'Wait it out'  was their best advice. I watched Nathaniel fight so hard to breath as his frail miniature body lay there helpless. Maybe the Doctors are wrong. A quick call to our Angel, aka neighbor and dear friend. She told us to not wait for an ambulance but to blow every light and get to the ER as soon as humanly possible She would be waiting there for us with Doctors by her side at the front door.

Something happens to your body when your worst fears are facing you head on. The room was spinning out of control. People were talking but I could not hear a sound. Lights were blinding. A powerful storm of nurses, Doctors and specialists were a tornado around me. I gripped the wall.  Screaming as loud as I could inside my head. I prayed to God. I became a beggar.  I would make a deal with the devil if I had to.

Nathaniel had double pneumonia. He was minutes away from deaths door. How could the Doctor that morning have missed this? As I remembered he didn't ever bother to listen to his chest. Oh Boy, GAME ON.  Warrior Mom has officially arrived.

Nathaniel means 'a gift from God'. Who knew?

The Doc that did not bother to thoroughly check Nate's vitals had to meet with me.  I actually felt a little sorry for him. He was about to face a lion. I tore into him like raw meat. He treated my son like a 2nd class citizen. Like a DS child from the 1960's that they thought did not deserve the perfect care (or any care for that matter). You have met your match my dear. You will never drop the ball on another Special child again. Enough said.

"I am who am" article

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Gianni

[Photo by Mark Randazzo]

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Grace

[Photo by Mark Randazzo]

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Molly

[Photo by Mark Randazzo]

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Holly Simon and her son, Nate

[Photo by Mark Randazzo]

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Michael

[Photo by Mark Randazzo]

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Henry

[Photo by Mark Randazzo]

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Clare

[Photo by Mark Randazzo]

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Todd Hollis holds Alina, Anne holds Meg, with Noah and Caleb in between

[Photo by Mark Randazzo]

Gianni

I am who I am

When her son Nate was born with Down syndrome, Holly Simon wanted to change how the world saw him and other children like him.
Frustrated that she couldn't change the world on her own despite years of trying, she has now set her sights on something closer to home. Teaming up with photographer Mark Randazzo, the pair photographed children who do not fit, as Simon says, "in the box" for a photo exhibition.
"I want to raise awareness that it is not OK to ever call a child the R word," she says. "I may not ever be able to change the world, but I can make a difference one person at a time."
The photo exhibition is part of Simon's long-standing Holly Days fundraiser, held every year around Nate's birthday, for the National Association of Down Syndrome.
"We all fit," Simon says about the children with Down syndrome and the other children in the exhibition who have unique personalities. "I just want them to be looked at like you look at your own child."

If I only knew then.

Who knew that a simple blog could bring me so much happiness? I am extremely excited to see where this new adventure will take me. I have to thank my neighbor for coming over to help me set up today. Not only is she one of the funniest blogger's I know, but she is determined to stop me from using the .........dots...................in between all of my sentences. It will be a struggle....But I will work hard to make her proud of me.

Thoughts are flooding through my head as I sit here. So much to write about, so little time. My blog will be a maze through my passion to give Down Syndrome a voice. My road is a long one.  I will fight to the end as Nate enters this great big world with wide eyed hope for a magnificent future.  He will have just that.  With wisdom, laughter and just plain luck we all can make a difference on how our children are seen and heard. I will never pretend that this is an easy road.  But I strongly believe that each and every morning as I wake up I have a choice.  To be happy or to wallow in pity and self doubt. I choose to live a happy, crazy and at times unpredictable life. It's mine for the challenge and I'm gonna hit it head on.

I have several Mantra's that I live by.


It is what it is.
It will be what it will be.
I am who I am.

These words are what I say to myself over and over.  Believe me it doesn't always work.  But at the very end I hope that the good out weighs the bad.

Live and let live


Just remember to enjoy the journey.

Enjoy!

After the mourn...

The clarity came in quickly.

Dan and I held our baby tight.

Stop telling me what he won't do.

Stop telling me who he won't be.

Stop it.

He is a child.

He is Nathaniel.

A gift from God.

Not your text book version.

BUT Nathaniel, my son.

At first I was afraid to see Nathaniel.

Afraid to hold Nathaniel.

The "sorries" had me believe that my son must be 'different'. Something HAD to be terribly wrong.

I was frightened.

I held my breath.

I am his mom, damn it.

Give him to me.


All I saw was my new born baby.

Perfection.

 I would tell him softly that I would take care of him forever. A promise that I have kept and cherished since the very first day we met.

I cried, although we really were not sure why. (Now I know it was because of the sadness and fears that were handed to me).

My mom walked in the room as I held Nathaniel tight. She asked me why I was crying.  "Mom, our son has Down Syndrome." To which she replied,  "So what, he's alive isn't he?".

 Self pity was gone, never to come back.  The gift my mother gave me was priceless.

Let the CELEBRATION begin.

My vision is my mission.

  I WILL erase the sadness in those delivery rooms. 
NO mother shall ever hear an "I'm sorry' and be met with dark stares again.

No child deserves any less of a jubilant moment. 
Their BIRTHDAY.

It is their right.

It was taken from me.

But I want it back.

"It is what it is" my dear friends.  A new day.  A new dawn.

Save your sorries for some one who needs it.

That person was certainly not me.

Re -born

Someone once told me that I was reborn the day my 5th child was born. I kinda think he was right. Well, maybe not reborn, maybe a huge knock upside my head. An amazing wake up call.  Either way, I am awfully thankful.

It was 9 years ago when my son entered the world.

  My 5th baby.
Looking forward to another simple birth and returning home (to probably make dinner).
The room was full of great anticipation. Nate was breach.  I had gone for acupuncture, Chinese therapies and massage to turn the baby, but to no avail.

 But by some miracle, this little knuckle head turned at the last minute.
 This lead the way to a huge celebration in the room (cheering the loudest was my husband- happy that my recovery would be quicker and I would be up and doing laundry faster. Yep you heard me right). 

Nathaniel was born quickly,
 but I did not hear him cry.
Not a peep.
 I would not lose my focus on the doctor as I was definitely not going to pay attention to the silence.

  Moments felt like eternity.
I saw my husband put down the camera to give the nurse a puzzled look. She in turn nodded, and that was my red light to freak out.
The silence in the room was deafening.
The looks were as cold as ice. What in God's name was going on?  Dan turned to me within minutes of Nate's arrival, slowly and softly he came to me and said "Hol, I think our son has Down Syndrome."
My legs began to shake and I went into some strange shock. The celebration quickly turned into the darkest moments in my life.
The Doctor apologized, the nurses would not look at me and despair filled that once joyous room with toxins.

 I followed their lead.
 They were all so sad, so sorry...BUT why? They must have been telling me that Nate was not going to make it. Why else would you be sorry? Enter the mourning stage.

I cannot believe it has taken me this long.....

Good Morning.

Been thinking about this blog in my mind for months. What I would say?  How I would say it?  And WHY! Well I may not have any answers yet, I really do believe that we can be the change we want to see in this world. So here I go.  The Carrie Bradshaw of my dreams. A mom who is trying to leave her mark, each and every magnificent day.

I have come to realize that LIFE as you know it is pretty darn simple. We all struggle, hate waking up on a cold morning, trudge through, worrying about how many calories are in our lunch, wondering how the hell we are gonna pay tuition this month. Does this dress make me look fat? Holy sh*t she cut my bangs too short.  My son will not do his math. 
  

Guess what?  Who cares?  I mean I know we have to keep focus, stay straight and carry on. But in the big picture, the movie of your life,  all these things will pass. So smack a smile on your face.  Do something nice for someone else.  Talk to a stranger and carry your head high like you are a Rock Star. Because if you truly believe it long enough...YOU really will become a Rock Star!