Saturday, July 27, 2013

for my children.....

Its amazing how far back the memory can go. Yet, I often cannot remember what I walked into a room for, or what I had last night for dinner.
But certain thoughts and times can be vividly kept to memory.

I wrote a blog the other day about 2 of my kids and their camp counselor summer positions. It included wisdom from my middle son Luke. Luke mentioned he read it today, but also mentioned that it was the only time in my blog history he was written about.
OK, seriously I doubt he had any facts at all....but crap...that is possible.
I began my blog writing to release my emotions from Nathaniel's birth...
It was a simple release, never thinking anyone would read...Let alone be inspired by little old me and my jumbled thoughts and occasional 4 letter words.

If you are not a writer- I encourage you to do so. It truly frees your soul. In time it will become therapeutic, drug like. Feeling as though the vino is down to the last drop, it will warm your cockles and bring on endless pride.

Releasing words, feelings, thoughts and wishes.

I am beyond humbled by the comments I receive. Wisdom, inspiration and happiness from my frantic typing seems hilarious as I often forget that I truly am a full grown woman that has been down many a roads and learned many a lesson.

I am reminded by my children that I am neither holy or perfect. I am neither a saint or a sinner. I am truly just a work in progress doing the best that I can at any given moment.

But after Luke mentioned that he was never the topic of my thoughts and words it bothered me.

 Little does he know that every breath I take, every move I make...(eerily into a song) I am thinking about him. I think about his day, his happiness, his fears, his hopes, his loves, his heartbreak, his desires, wants and wishes.
 I pray that he is safe and sound and taken care of when out of my reach.
I am reminded that he looks exactly like me when I focus on his deep set dimples and green wanderlust eyes.
I am reminded of him at 2 years old as he pulled down the Christmas stocking on Lindseys birthday causing an iron holder to drop onto his cherub face casting a 1/2 scar full of frightening stitches. Yes, I see the beauty in that scar and am reminded that even if I am close by I cannot always be 'there'.

That I must believe steadfast that I taught him well and he will at least remember half of my lessons.

Little does he know that 20 years ago as I blossomed into a 250 lb monster of pregnancy, I asked God to only grant me daughters. As I had never had a brother I was clueless on raising a son.
Little does he know how I fretted about baseball, and toy cars.

Almost 20 years later, after God decided to not listen to me,  I am surrounded by more testosterone than I could ever imagine.

How did I get so lucky?

Pee at the base of every toilet in the house..
Toilet paper a foot away but never put directly onto the roll.
Cookies gone with the package still in place and intact.
Gallons of milk, loaves of bread and pints of peanut butter gone before I get home from the market.

Little does he know I worry about his loves. As I pray he does not get hurt, or hurt anyone else for that matter.
I have preached about opening doors, and entering last. Buying flowers for no reason, a firm handshake and eye contact at all times.
I have taught him how to do the laundry and load the dishwasher.
I have demanded respect even when he could spit fire in anger.

I pray he stays safe through the bar years, and keeps his head straight when tough decisions enter his world.
To say no.
To accept all others.
To give more that he receives.
To always remember to kiss me good night and to say please and thank you.
I may not have written this all down but surely he must know.

Maybe as parents we assume too much and focus too little. How many games have you watched yet talked to your friend while your son hit the bases loaded home run?
Maybe its just that simple.
Pay attention to what you have when you have it.

People come, and people go.
Friends love and leave...

Family is truly forever.
These are my seeds of life.
What will be left when I am gone.
The hopeful leaders of tomorrow and the one who will carry on my wishes and desires.
My children.

So, Lindsey, Nick, Luke, Ben and Nathaniel, this is about all of you.
Every little ounce of all of you.

I may not write it, but lord knows I think it every minute of every day.
I am proud,
I am humbled, I am frightened and I am happy.

I am hopeful and I am learning,
I am your mom.

For the rest of every breath I take you are my entire life.
So please copy and paste this into your memory. Sorry Luke for being so late...
Lets just assume you already knew.




Thursday, July 25, 2013

A brothers love....

Natie was merely a week old when the quotes started flying in.

The hallmark written words that usually stung my ears and brought painful tears that streamed down my face.
They all meant well.
They didn't know what to say...

Many words have etched there way into my brain, never to erase.

Some have stayed to help me in my journey others have stayed to haunt me...

But they are merely words, words that can cut deep like a knife through a cold pound of butter.

"God only gives you what you can handle"..."God chooses only the special parents"...."Your children will learn so much and become such amazing kids"...

I remember clearly my reply to the last..
"My kids are already amazing, we didn't need a lesson, we just wanted a baby"...

But it lingered in my head, for ALMOST 11 YEARS NOW....
"DO NOT BURDEN YOUR CHILDREN"...

Seriously, could people all take my simple message and merely say Congratulations, leave the gifts at the door and move on? 

Many years ago as all the kids were in the car, I asked them a simple question.
"If something happened to your dad and I, what would you do with Nate?"

  Funny but my middle man raised his hand first."I don't wanna  take care of him, I don't wanna take care of him now, why would I when he is older."
...Laughs surrounded my fear as I soaked in the obvious reality....
I was told to never ask that question. But Holly doesn't listen, ever...
The shock in the small white minivan quickly faded as my oldest and only daughter grabbed my heartstrings.
 "I will take care of him, duh"......

Fast forward,
 My memories can fill Soldier Field with the love, lessons and emotions that Nate has gifted to us...

This summer 2 of my children received jobs with the Chicago park district to work in our special needs camps.
Luke (My middle man) works close by and is able to hang with many of Natie's friends.

 Linsdey was placed farther away from home and with much older kids, (14-21) all the kids in her group have severe autism.
  Just because you have a brother with Down Syndrome certainly does not teach you how to work with kids with other special needs. She went in cold, somewhat frightened but her chin held high...

First day was a nightmare.
 A young man, with no communication skills, twice Lindsey's size and weight, got away from her.
Yep, walked into a strangers house, put his feet up on their coach and was not planning on moving any time soon.

Then the day at the zoo when a girl whacked the crap out of Lindsey during her melt down, and the following day 2 huge lumps in Lindsey's face....cold cocked and learning fast that this is not something many others could or would handle.

Yep, she came home every day, bruised with tears falling from her exhausted brow...

But to my surprise.
To my utmost pride, she went back, day after day.

I would listen to her frustration and her realistic fears. I would wait for her to say "I quit".
 I was ready.
But she didn't, she just got stronger.
I would tell her how lucky the kids were to have her there.
 If she were to leave, who would these kids have....???
Think about it, who would sign up for this knowing you would be walking into a boxing ring with your hands tied behind your back?

Damn I am proud of her,
Actually proud beyond measure...

In the past month I have seen my camp counselors talk to their brother differently. A bit more authoritative. Taking no back talk and teaching life lessons along the way.

Last night, on the rare occasion that we all could spend time together all 7 of us...Luke told me about this new scientific finding.
Doctors have pinpointed the exact 'mutation' in the Down Syndrome gene and can completely delete it in utero, taking away all traces of DS.


 I have read about this..talked about this and mostly I truly have no idea what this is all about. For some reason it turns my stomach...for reasons too personal to add.

I asked Luke what he thought.

Immediately he said it should be up to each parent.
Agreed.
"But don't you think majority of peeps would delete the 'abnormality' if given the choice?"
"Not if they have met Nate they wouldn't.".
WOW-
Ok.
"Nate is not gonna have an easy life, we don't have an easy life..."
"So, he is worth it...."
Ok....

"Nate's future is gonna be a difficult road..."

Luke stops me short, gives me the 16 year old look of disgust and says, "Mom if people were to meet Nate they wouldn't change a thing. His life will be fine, and so will ours. God mom, its Nate he's just fine the way he is."

Lord have mercy you got me there son.

No rose colored glasses in site.
Just our reality.
They heard me, they really heard. me.

Hitler wanted a blue eyed blonde arion nation...

I want a nation filled with differences, technicolor oddities, imperfections.
 Down Syndrome, red heads, brown eyed wonders.

No soap box here for me, just my reality.

Real talk-
 I am scared to death about Nate's future, and quite frankly mine.
I will never lie about that.
If given the time to think about all things, I would crack.
Probably unwind from the beginning and unravel spiraling into a psychedelic mess.
Hah- I don't think staying tuned off of reality is the answer, I just chose to not wallow in things out of my control.

I am also scared to death to let my 18 year old son go off to college next month.

So that's the best I can do.
Teach and educate the best I can.

I can raise a basketball team full of kids and show them that being different is a gift.

To be loud enough to cause a ruckus and have people take notice.

If Lindsey wasn't there to guide these kids, would you be there?

It takes a village my friends, it takes a nation.

Get off of your lazy boy and turn off the Kardashions,
Help us.
Help to guide our kids,
Lend a hand,
open a door.
Work at making this place a better, gentler place for all of us to live.
Live together as one....
Do not change me for who I am, but merely accept me for who I am......
 

If I was offered the chance to change anything about Nate I would probably ask for his stubborn back talking, foul mouthed behavior to soften.
But to change that Simeon crease, his slanted eyes, the short bridge of his nose, his short and stubby hands, his hi palette and his low muscle tone, I wouldn't.
It would then erase his ability to turn  a stranger into a friend, a kiss that melts your heart, a hug that fits right into your soul and the bluest eyes that hold all of life's joys and possibilities inside.


One smile, one hand, one lesson at a time.

I am who I am.
Yep~ I certainly am.

Saturday, July 6, 2013

The people we meet.

I often write about words that set me on fire.
Words like,
Acceptance,
Honor,
Love,
Appreciation,
Blessings......

But lately I realize that my world ignites from the people I meet. The things they bring to my table. The lessons they teach me, even if they are unaware.

We, if we choose, meet people all the time.

 Its truly up to ourselves what we do with them.

To be kind,
my new insane family!
To ask questions,
To care,
To not judge.

Unless we live our life in fear of others.

 I hope that all who read this enjoy the people that they touch and whom touch them daily.

I wish I was able to share all of my private emails. The ones of once strangers that are  now enjoying my journey with me.

Those humble words of gratitude that allow me the smile on my face as I enter the bed, and the words that give me a bigger grin as I am blessed to wake to a new, amazing, unwritten  day.


Sally (Kiernan) on Mad Men enjoying the day with us:)

I never take for granted those that I meet.
 I have learned that everyone has a unique and intriguing story.

Even more insane family!

Oh Yes, I have met many that think my questions are intrusive or nosey.


But that wont stop me.

Actually Nate, has taken over my voice at times, as he introduces the world with  his daily "Hello, I'm Nate" along with a firm handshake.
 Most peeps become our friends, some even stay and become family.

Our latest trip to California was just that.

A Holly-ride of amazing, generous, heart full humans.

From the talks on the airplane that originated from a smile, to the amazing man at our pool.

Stories that will knock your socks off.
All from a simple hello.

Anther huge lesson that I have learned along my way, is to "ask"...simply ask.

If you question from your heart I see no worries ahead.

It began with a simple Facebook message to a producer in California that knows a friend of mine.


It spoke volumes as this man wrote me back within 24 hours.
It trumpeted sounds of character as he had already looked up my website.
 He was kind, he was honest and he was magical. (may I add handsome....sorry Hal, had too)
As you see I asked this man for a simple something.

It ended with a day of celebration on the MTV's #1 show AWKWARD.  Yes you heard me. I asked, he delivered with kindness.

Nate was treated like a king as we were welcomed with Producer chairs and food from their service. Honestly, what a beautiful man.
 He gave.
 He got back my friendship.
Forever and honest.
The cast of AWKWARD.

We spent a sunny magical day poolside at my favorite little Hollywood hide away.
I went to check on who Nate was carrying on with.
His name was Ingo.

A gentle soul full of tattoo's and an accent from his German homeland.
Ingo you see is a drummer.
A real drummer.
 

A professional drummer for decades to bands that exceed my musical expertise.
We joined laughs and smiles. We exchanged e-mails and bid each other a fond good-bye.

Seriously, who has friends like this? I DO!!!!!!


Ingo my new friend will be hosting a "Drummers for Down Syndrome" awareness event, including some of his amazing drummer peeps.
Are you kidding me?

It was that easy.

It feels better than the indulgence of oozing hot fudge loaded with nuts.

Money cannot purchase this.

Take you mansions and your Prada,

I have friends.

 Friends that understand me and my crazy mind along with the notion that we really can make a difference in this world.

Yes they jumped on to Holly's crazy bus.

But the amazing thing,
they haven't asked to open the door and jump off.

Imagine that?!

Shall I continue to talk about my new sister. My new brother, brother in-law. Their kids that somehow blended right out of my lap and into my heart.

The friends that I now love, and think about daily. The friends that open up their homes, nurture me with warmth and genuine care.
 And then there were their friends that they shared.
The gals who not only bought me a bracelet and left it with inspiring words at my bedside, and yet another that borrowed something for me to use.....It just kept pouring.

Aunt Marcia
Uncle Larry
 It poured so heavy that I was eating humble pie.
Daily.



How did I meet them...I have no idea.

 Maybe I'm just lucky..

Or maybe I have worked really hard to achieve this.

It was never about money,
Fame,
fashion or ego.

Just the simple idea that I had.. that we should all be accepted as equal.

That 'I am who I am' would resonate throughout our world, as loud as 'just do it'.


Our crazy kind waiter!



How about the man that we met as we were in awe of a store front on Melrose Ave.

 The shop was full of gowns that only Gaga would wear.
 Lindsey stood with delight.
I asked the man close by if he knew what this place was, no door no sign just art.

Well, it was HIS shop.
AND YES, we got a private tour.


Cuz I asked,
I said hello,
I stopped to talk.
 



 
 
 

 
Give back more than you get and the world will align.

Thank you Chris for Nate's beach toys!

Daily I feel so damn lucky.

But Luck has nothing to do with this does it?

I work hard.
I give,
Then I give more.
I love with an open kind heart.
I do not judge others.
I listen,
I ask.
I say hello.
 I will never be able to tell you about the lives that touch mine.

I can only tell you to go out and meet someone new today.
Or tomorrow.

The opportunities are endless.
Some of my peeps:)
You're not happy with what surrounds you?

GET UP.

Change that.

I am who I am.
I am so grateful for my friends, the old and the new.

I am grateful beyond measure.

If you're reading this it is probable that we have  met and that we are steps away from something amazing.
From my outstanding friend Joey:)

I hope you don't mind...
But I'm just going to start with a simple 'hello'.