Coffee, Shakespeare and Girls -- What Would You Do With 10 Years?

August 2, 2005 Patrick had just turned six...

was ready to enter kindergarten and was given sweet relief.

All treatment for Acute Lymphoblastic Leukemia was complete.

No more chemo every day.

No more spinal taps to check to see if the spinal fluid was clear...

and to add a little chemo just to make sure.

No more constant blood counts.

No more agonizing over numbers of neutrophils, lymphocytes, hemoglobin.

Done.

It was a strange thing to be given such a date...and trust me, when we were given that date in 

June of 2002, it felt like a weird form of torture.

We got good at finding parks where no else played and a little boy without many white blood cells could enjoy the outdoors without being near anybody else.

We visited the beach a lot.

We went to preschool when we could...and slowly, irrevocably, the time passed.

That little boy got his chance at a cancer-free life.

*****

August 2, 2002 became known as Chillin' With Chalk.

We were uneasy about celebrating too big.

Didn't want to jinx anything.

Couldn't dare to dream too big.

So we invited friends and family to Central Park in the middle of our town and we asked them to draw any chalk picture that celebrated this great day.

We collected money for the chalk -- 50 cents a piece - and donated the money to a dinner out for the doctors and nurses and many others who were on our three year journey with us.

Watching these colorful messages of love and hope decorate our park was one of my favorite moments of that terrible journey.

It was love out loud.

Tangible.

Vibrant.

Messy.

And then August 3rd rolled by...and school supplies needed to be purchased...and laundry folded...and dinners and lunches and breakfasts made...and the days ticked by.

*****

Every August 2nd, I would hold my breath and wait for the yearly blood counts and pray.

2006 - First grade and a new baby sister

2007 - Second grade - Holy Communion

2008 - Third grade -- the beginning of trying to ride a bike and being in Miss Mindy's Musicals

2009 - Fourth grade - First Reconciliation

2010 - Fifth grade and the love of New York City begins along with Broadway - Steve, the paraeducator who is all-pro, joins your bro squad

2011 - Sixth grade and a sleep away camp and we get serious about learning to swim - 

Jack leaves for college

2012 - Seventh grade and bike riding gets real - Sarah becomes part of your dream team at school and  well, maybe our life too

2013 - Eighth grade and the love of Shakespeare takes flight -

Mary Kate leaves for college - Confirmation and official cell phone use begins

2014 - Ninth grade: new school, old friends become new again 

2015 -- bing, bing, bing

An entire decade of August 2nds...clear and free of leukemia...10 years of good health.

What has Patrick done with those precious ten years?

1) Read a lot of books.

2) Tried all sorts of new foods.

3) Visited some amazing new places and revisited old favorites.

4) Sunk deep into Shakespeare and musicals and created a stunning assortment of cast lists

5) Got involved in Special Olympics basketball and soccer - swimming on a typical team as well

6) Danced

7) Sang

8) Dreamt about proms and dates and girls and plotted way too many times on who could be his girl

9) Belly laughed at way too many fart jokes courtesy of his dad

10) Grew and grew and grew

He enjoyed the simplest of pleasures and relished them as gifts.

Cheering whenever someone in our family came home...or had a birthday...or did something of note.

He hugged you tight.

He asked how you were doing.

He looked forward to the releases of movies or shows with a calendar and a pen, 

marking the days so carefully.

In short, he got the chance to be a kid...growing into a teen.

There are moments when it hits me...that we've made it through...and although they sneak up on me, 

I still know why those tears come so easily.

It happened a few nights ago watching the play Matilda, standing up clapping in an ovation, a giant theater filled with the excitement of great music wrapping up thoughts and emotions from a great story that unified us all...and I tried to somehow send out a universal thank you note within each clap...to all of these healthy people in this theater beside me, able to stand and clap and enjoy a show...to all of the actors, all of the musicians, all of the light guys...everyone...how lucky we are.

Right here.

Right now.

Tonight, Patrick had his first cup of coffee.

He hung out with his favorite people.

He tried new things and went on an adventure.

He found time for music and dreaming.

It's been a beautiful 10 years.

10 years of mundane, trivial, annoying,

messy, vibrant, 

life.

Thank you doctors and nurses and researchers.

Thank you, universe.

Thank you.

Chillin' With Chalk 2 is set for August 22, 2015.

Meet us in Central Park...or your central park...

10 years later we have Instagram, and Facebook and Twitter and not to mention 

real life...

meet us anywhere, in any way, and share a chalk drawing to celebrate life and love and color.

Can't wait to get messy...
and fill the world with color.
For one day.

To Thine Own Self Be True

The guy likes Shakespeare.

I've told you that before...over here.

He walks around with a beat up MacBeth book in his hand and yes, he has huge chunks of it memorized.

For his birthday, his wise and thoughtful aunt got him a similar version of Hamlet.

It's called Shakespeare Made Easy.

On the left hand side of the page is the original text.  

On the right hand side is the translation or an easier version.

So, he's been walking around for a few weeks with Hamlet in hand...in restaurants, carrying it to speech,  thrown into my bike basket.  I had a friend who saw him in the waiting room at speech reading Hamlet come up to me and kind of ask out loud if this was real.

Did he like Hamlet?

YES.

He does...really.

As soon as she thought it was real, she turned to Patrick and started to dish...

who was his favorite character?  

What did he think of Hamlet?

We had stumbled onto another lover of the British playwright.

I think that as a way to diffuse, explode and crack away the myth that people with Down Syndrome are stupid, we should just have them carry around some texts of Shakespeare.

It blows people's minds.

Like looking in a fun house mirror they just aren't sure of what they see.

We like to place people in tiny, little, immovable boxes.

It's more comfortable that way...

but sometimes they don't fit in.

Sometimes the stereotype cracks.

People have to stop and rethink certain givens that they've trusted their whole life.

And if they stop and rethink that one, who knows, maybe there are a whole bunch of other certainties that just aren't that certain any more.

Powerful stuff.

But only if you're given the chance...

only if the opportunity is seized.

So, we took a chance and signed Patrick up with other teen-age Shakespeare fans for a two week camp.

It was all day long with typical kids and real actors and directors who are staging some Shakespeare for a festival in our town.

He got up each day energized and excited to go...but wouldn't tell us too much.

He didn't get the script for Much Ado About Nothing until midweek of the second week.

What had they been up to all this time??

Patrick got the part of Benedick for Act I and Don Pedro for Act II.

That, right there, was something he'd never considered before...

he fiddled with that idea, resisted it for a few days, but gradually came to know that you could play two parts.

The play of Much Ado About Nothing was going to be presented on Friday, 

just two days after getting the script.

Patrick began memorizing, repeating and rehearsing in his room...

but he didn't have enough time.

Thursday night he was worried.

He was used to knowing his lines (and everybody else's) -- he couldn't believe he wouldn't be ready.

But the joy of being a part of the play and a part of this group motivated him to accept the truth and just use the script when needed.

So today at 3pm, Caroline and I showed up for a little Shakespeare.

I'm always on pins and needles at things like this...you just never know how it's going to go.

But this was a group who shared a passion.

A group where he spoke the language.

A group where he belonged.

He didn't have to earn his way in...he just had to love Shakespeare and that was good enough.

The little play was a whole lot more...it had improv, movement, singing some explanation of who Shakespeare was as a person...and yes the entirety of 

Much Ado About Nothing.

Patrick was a part of everything.

Before my very eyes I watched a metamorphosis of unsure junior high kid into full high schooler...

confident and true to himself.

I was teary thinking of my friends with young children with Down Syndrome who continue to be denied entrance into this world of acceptance and inclusion.

If only those naysayers could have seen the improv!

I'm so grateful to a group of actors who have created a sanctuary for kids who love Shakespeare and allowed each teen the freedom to come as you are and take away all that you can.

For costumes for the show the kids were supposed to wear black.

We missed the memo.

Patrick came home the night before the show and created the costume he thought would work.

It wasn't black...

but I got no last minute phone call...

no rescuing the situation...

no tweaking or freaking out.

It didn't matter.

No one seemed to care, 

and the production went off without a hitch...

so refreshing.

Shakespeare with a chill pill.

And after the play came this quote,  "You can go now.  I'll meet you at home."

Full teen.

Tonight, I am grateful to the Davis Shakespeare Ensemble.

I'm grateful to this group of actors, directors and musicians who share their passion and work to make Shakespeare come alive.

Grateful for their hard work and ability to engage with teens of all sorts.

I'm grateful to live in a town that is accepting and tolerant and inclusive.

I'm grateful to an 8th grade teacher who taught Shakespeare to an entire group of middle schoolers, never dumbing it down or diluting it, thrilling them with the action and the language...

and lighting a fire.

Most especially, I am grateful to the Bard of Avon...

the witty, the insightful, the tragic and comic Shakespeare...

who has touched the heart and soul of my son hundreds of years later.

There's no doubt that Shakespeare has shaped my son...who would have guessed?