Crazy Love

I would often see him when I was dropping Caroline off at school.

He would zip in and drop his girls off at school and head off.

He was a great big bear of a man.

His love was palpable.

Crazy love.

I knew it well.

My husband has that same kind of crazy love.

We rarely exchanged words...

maybe an occasional smile.

But because of that crazy love,

I knew I liked him.

I could feel the blanket of love he wrapped around his two girls, myself.

I didn't even know his name.

Oh, but I knew him.

Knew he'd be the kind of guy I could hang out with at a barbeque.

Someone I could dish with...

...because that crazy love was something we had in common.

Now, my chance is gone.

Yesterday, I learned his name.

Mark left us...

bound for a place filled with even crazier love.

Deeper, more mysterious.

Jaw-dropping and wonderful.

It's hard to imagine...

and all of us left behind just want another few days,

well, maybe weeks or years or 

damn it, decades.

*****

I read a book a while ago called The Fault in Our Stars by John Green.

It's about two teenagers who have cancer.

I don't want to give anything away because I want you to read it...

it's really amazing...

but at the end someone has to speak about the terrible torture of a shortened life and uses this quote:

"Some infinities are bigger than other infinities.

There are days, many of them, when I resent the size of my unbounded set. 

I want more numbers than I'm likely to get, and God, I want more numbers for _____. 

But, my love, I cannot tell you how thankful I am for our little infinity. 

I wouldn't trade it for the world.

You gave me a forever within the numbered days, and I'm grateful."

"a forever within the numbered days"

"our little infinity"

That's all any of us get.

Yes, some infinities are bigger than other infinities

and none of it makes any sense.

Why should someone with so much crazy love

go so soon?

Why should someone else who is a rock solid criminal live into old age in prison?

In moments like this I wonder why this love, this life, 

this chance to breathe deep and hold close those we love the most,

why must that end?

But again, I know, that I don't get to know...

not just yet.

On this side, I get to sink into the questions;

try to fight the quicksand of believing we can figure it out.

What I know...all I know...

is that energy doesn't disappear.

I know for sure that Mark's crazy love is cosmic bubble wrap surrounding his girls 

and his wife, Debi, forever.

I know that we are all better for witnessing that kind of love.

I know that his girls have been loved oh so well by their dad.

Isn't that all that matters?

How well did you love?

How deep did you love?

Who did you love?

Mark wasn't stingy.

His crazy love surrounds us all.

*****

"We are travelers on a cosmic journey,

stardust,

swirling and dancing in the eddies and whirlpools of infinity.

Life is eternal.

We have stopped for a moment to encounter each other,

to meet,

to love,

to share.

This is a precious moment.

It is a little parenthesis in eternity."

-- Paul Coelho, The Alchemist

Working Myself Out of A Job

It's October...

pumpkins and falling leaves and that wonderful scent of changing seasons.

It also happens to be Down Syndrome Awareness Month.

My Facebook feed was blowing up today...

filled with cuteness overload of children who have Down Syndrome.

Of course, I smile big when I see this

because frankly, I don't see enough almond-shaped eyes with Brushfield spots in my daily world.

I live in a town of 60,000 people.

With the rate at which Down Syndrome occurs in our population - which is 1 in every 691 births - 

my son, Patrick, who is 16 should have almost 100 other people in our town with Down Syndrome.

If we're lucky, we have about 25.

There is not a single child with Down Syndrome who is my son's age in our town.

Not a year apart.

The closest child is 4 years younger or three years older.

Which makes it pretty clear that where I live many, many people chose not to have their child with Down Syndrome when they found out in utero that their baby had Down Syndrome.

What a colossal loss.

If only they could know, really know, what they missed out on.

But how can you explain it?

How do you advocate for someone's right to live?

How do you dispel the fear?

The ignorance?

The cultural bias against people who have a lower IQ?

Why would you choose to have your baby if it were diagnosed ahead of time with such a 

terrible, debilitating, sad condition?

Because the real truth is that having Down Syndrome isn't debilitating, terrible or sad.

What's sad is living in a world where people think that.

Living with people like Patrick requires an understanding that people need support.

Ummm...spoiler alert: we all need support.

If not right this minute, then later on down the road.

If you don't enter the world of disability as you age, you're dead.

There's no other option.

You need support as you age.

It's a given.

So why is it hard to give support earlier?

*****

Here's the deal, people like Patrick are just...

PEOPLE.

People who have likes and dislikes.

People who have strengths and challenges.

People who have hopes and dreams and crushing disappointments.

PEOPLE.

What people like Patrick need is equality.

If people like Patrick were equal, we wouldn't need Down Syndrome Awareness Month.

We wouldn't need to beg, cajole, nudge and encourage schools to open 

their typical classrooms to them.

We would see them working in regular jobs in regular places.

We wouldn't need separate proms, separate teams, separate camps.

We wouldn't need ultrasound.

Because your life wouldn't be up for debate.

We would just be together living our lives...figuring out ways to offer support and welcome.

And that, my friends, is the month, year, decade and century I want to celebrate.

I want to have a baby born with Down Syndrome and to never hear the words: 

"I'm sorry."

I want people to cherish and understand the incredible, astonishing gift that people with 

Down Syndrome bring to our world.

No, they are not happy all the time...

but they understand how to love deeply and with abandon.

If you are lucky enough to enjoy this love, you know how it feeds your soul.

This depth of love is special to the 21st chromosome.

People with Down Syndrome offer a lightness to life.

They offer kindness and graciousness.

They get the important things and have an honest way of cutting through the BS.

They really are needed in our world.

They aren't optional.

They offer a necessary message...

a must-hear letter from the universe:

This.right.here. love and kindness and light...

this is what matters.

So, join me, in dreaming of a day where nobody celebrates Down Syndrome Awareness Month.

Help me, work myself out of a job cheerleading for the basic rights of people with Down Syndrome.

I can't wait to just kick back and enjoy October.

Being Nice Isn't Nice

My heart is so heavy today.

Discouraged.

Worn down.

Feeling like I was scaling a mountain and I fell...way, way down...and I'm stuck.

I recently listened to this podcast about expectations.

It is amazing and terrifying and profound.

It tells the story of a man who lost his eyes to cancer before he turned two...both eyeballs removed.

Completely blind.

Only, not really.

Because, like all two year olds, he adjusted.

He intuitively started clicking and making noises to echo-locate in his world...just like bats.

He got so good at it that he uses a cane as a very minimal guide often just holding it up by his side.

He can ride a bike.

Yes, no lie.

This blind man, rides a bike on his own by clicking as he goes.

He maneuvers through his world, very capably. 

He has his freedom...

but because this is so rare for blind people, he goes around the world explaining how it can be done.

Proving all of us who don't know any better, wrong.

So, all of us, with our über compassionate hearts who want to reach out and hold a blind person by the elbow and guide him along, take it all down a notch right now. 

It's not necessary.

What does Daniel Kish need from us?

Opportunity.

An open mind.

Equality.

To be seen.

*****

I have a son with Down Syndrome.

His name is Patrick.

He is 15 years old -- capable and reliable and smart.

He's someone who always knows where his cell phone is -- much better than me in that regard --

and charges it up faithfully.

Patrick, as you may know, loves theater and Shakespeare and being in plays. He's been in over twenty performances of all kinds.  He memorizes scripts; writes his own scripts; plans cast lists and eagerly awaits the latest soundtrack from his latest Broadway favorite.

I know that's not the message that most of the world gets when you find out about 

Down Syndrome...but it's the truth.

Yes, he needs to be supported in his learning.

But in his living?

He is fine. Thank you very much.

He just needs to be seen.

He needs to be given opportunities and support.

But isn't that what we all need?

Tonight was the play that Patrick has been preparing for since early November.

He didn't get a part so he was allowed to do tech.

He was excited to be in charge of a spotlight.

The only problem was...he wasn't in charge of a spotlight.

He was in charge of following along in the script and cueing the student who was using the spotlight.

Ummm...that's not a job.

We all know that the student doing the spotlight knew the cues and needed no reminding.

I am cringing thinking of Patrick taking this job so very seriously, offering the cues, while the student who was doing the spotlight just played along.

That job which was no job sent a devastating message of incompetence and unreliability to every single student performing in the play...and every audience member...and every faculty member.

That message isn't one of inclusion.

It's one of exclusion.

A message of being set aside.

A message of:

you're only good enough to breathe the same air...not actually work on the same play.

Ironically, the play is called Metamophoses.

So much change and growth could have happened.

Should have happened.

But people who had very good eyesight turned out to be unable to see. Blind to the opportunity.

People with very big hearts and genuine concern for students tried to be nice.

But nice isn't nice.

Reinforcing stereotypes is never nice.

Lowering your expectations is not compassionate.

The result of these good intentions: people in the margins stay right there.

*****

I don't know how you help someone to see.

How you change a perception.

All I can do is show up with my kid and hope for the best at every opportunity.

He knows what to do.

He just needs a chance...

a chance to be seen.

God bless Patrick.

Who took his job that wasn't a job and did his level best.

That's all you can ask of your child.

But I can ask the world to do better.

I can ask the world to blink.

Rub your eyes.

Pause for one minute and contemplate who you are not seeing.

Who do you overlook -- even with good intentions?

Who sits on the margins of your world?

Can you expand your view of the horizon a little bit more?

Who can you reach out to and lift up?

World, open your eyes.

You are missing out.

******

*UPDATE*

Sometimes, very rarely, things tie up with a bow.

They circle around and make sense.

This is one of those times.

After an early morning email to the director with many of these same thoughts enclosed, 

the director, kindly, thoughtfully, responded with his eyes wide open.

He had a second chance and he used it.

Tonight, the last night of the play, Patrick worked the spotlight.

Someone else read the script.

He stood on a cafeteria table...

"it gave me balance" he delightfully noted,

and used the pink or blue lens and shone that spotlight right where it needed to go.

He did it.

Awareness + second chances = opportunity

I'm grateful for a director who was willing to think about it.

Grateful for kindess.

Grateful for grace in the ordinary.

All my heart can say is thank you.