Tuesday, June 30, 2015

The Violet Patch

"The free soul is rare, but you know it when you see it --
basically because you feel good, very good, when you are
near or with them."  -- Charles Bukowski

For the past few days, I've been visiting a violet patch.

You might not understand.
I've been hanging out with a crowd of people that are rare and beautiful...
often over-looked
or unnoticed
or easily dismissed...
this past week-end they were a significant chunk of the population.

I attended the National Down Syndrome Convention
in Phoenix, Arizona.

"Think of typical people as daisies -- we are common, beautiful and we grow easily.  Think of people with Down Syndrome as violets -- they are rare, beautiful in their gorgeous, velvety way and need more care and attention in order to thrive.  
They are not broken daisies.
They are violets living in a daisy world and our world is so much better for their 
beauty and difference."

That's my way of condensing down Kay Drais's  powerful and moving letter to educators,


In our family, whenever we see someone with Down Syndrome, our code word is violet.
We are excited and eager to connect eyes, catch a glimpse of the person and if we're really lucky have a conversation.

In our town of 60,000 people a genetic disorder that happens 1 in every 691 births 
just isn't present at all. 
Patrick, who is almost 16, has not a single person his age in our town with Down Syndrome.
There should be close to 100 people with Down Syndrome in our town,
but our violet patch is tiny indeed.

So, we cherish the violets...
cheer them on...
and notice their absence.

Our garden is so much better with variety.

I love the happy daisy.
White with a yellow center, I admire it's cheerfulness
and its ability to thrive.

But that doesn't mean I can't pause and enjoy a violet too.

What is lost when we have less diversity?
What is gained?

Baskin-Robbins has 31 flavors for a reason.
Not everyone likes vanilla.
Yet, it seems that in our world, we are getting so
sanitized and homogenized,
that our ability to deal with difference is stunted.

And our ability to cherish and honor difference is lost completely.


So, you can imagine the joy and freedom of having a convention celebrating Down Syndrome.
Imagine how the families feel.
The kids.
The teenagers.
The adults with Down Syndrome...who are busy living their lives and having relationships and 
yeah, being adults.

I decided at the last minute to take Patrick and Caroline.
I thought they would like the pools and the hotel...
turns out for Patrick he found his people.

When Tim from Tim's Place Restaurant in Albuquerque, New Mexico came up onto the stage it was as if Tony Robbins had made an appearance.
Patrick and his friend Jamie (who also happens to have Down Syndrome) would pump their fists and cheer, "Oh Yeah!" after every tidbit of inspiration from Tim.

Tim danced onto the stage to Pharrell Williams song, "Happy" --
and the crowd danced too. :)

Then he told the audience that he had an awesome life...and that he was going to share
six ways to have an awesome life.

I pulled out my phone and started taking notes --
who doesn't want an awesome life?

Here are Tim's gems:

1) Love people -- pretty clear here -- just love the ones your with.all.of.them
2) Work hard -- he told the crowd that he used to spend a lot of time on the computer and watching TV but with the help of his friends he began exercising more and lost 70 pounds.
3) Believe in Yourself -- he always wanted to own a restaurant and his family helped him believe that he could
4) Believe in Others -- with the success of Tim's restaurant, he wanted a way to "pay-it-forward" and so he began a non-profit called Tim's Big Love Foundation where Tim gives help to other inspiring entrepreneurs who have an intellectual disability. His friend, Matt, came up to talk about the bakery he owns and how he got his start from Tim's foundation. Incredible!
5) Be happy -- don't be afraid to shake it (as in dancing!)
6) Be the light -- "The world can be a scary place and some people want to be scared.  Not me." -Tim
Show people the light in a dark world. 

And then he started dancing again...and so did the rest of us.

Here, among a solid chunk of violets and a typical group of daisies, we rocked it.
We danced the night away and got our groove on.


Life is what you make it.
For people with Down Syndrome this message is how they live.

They make it awesome.

They know what matters and all the rest just floats down a lazy river for them.
I wish everyone could hang in a violet patch...
filled with free souls...
love and light.

If you get a chance, grab it.
You just might learn what awesome really is.

Tuesday, June 9, 2015

Cutting the Oxygen Lines

A few weeks ago, Jack graduated from college.
It was surreal.
And really really wonderful.

But time became a shape shifter.
One minute, I was holding an infant, remembering the Christmas carols I would sing to him in his first few weeks on the planet.
I'd see a kindergartener holding a ziplock baggie sheepishly:
the special card acknowledging the lost tooth was in there, but the tooth was AWOL...
possibly swallowed at lunch.
I'd remember a 4th grader frozen for the Saint Museum with a circle sticker on his hand...waiting for the button to be pushed so he could come to life and tell his story.
I could see a hungry teen cooking family favorites.
A big brother rocking out.
A graduate.


Watching him with his friends, celebrating and trying to freeze time...
trying to squeeze the last few days into a forever place in his heart...
I flashed back to my graduation and the same ambition.

At Jack's graduation ceremony, there were many interesting people making really interesting points...but my favorite was
Mellody Hobson.
She's married to George Lucas of Star Wars fame...but she's pretty amazing in her own way.
I admit I thought it would be a lame gig...filled with stories of her stellar career and talking points.

Mellody Hobson rocked it.

She reminded all of us of an explorer/daredevil named Felix Baumgartner -- an Austrian skydiver who holds the world's record for the longest freefall 
and for breaking the speed of sound with just his body. 

Felix used a weather balloon to take him up into the stratosphere.

Getting ready to jump.

Felix went up and up and up -- 24 miles up -- making the highest manned balloon flight.

Then the people guiding him from down below told Felix to disconnect the oxygen lines.

There, so high up, you can see the curvature of the earth, Mellody reminded us.
She told us the world was beautiful in this moment: peaceful and connected.

This is almost exactly how the graduates are on graduation day.

She reminded the graduates that in this moment, things are frozen and beautiful.
Things make sense.
You feel a part of a greater whole.

But, you need to disconnect the oxygen lines in order to make the jump.

When Felix is told this, he is quiet and still.
They repeat the request and still, he thinks about it.

He doesn't want to disconnect quite yet.

We all get it.
It takes guts to make the leap.
It's crazy.
It's radical.
It's life-altering.

Somehow, we all take one last deep breath and find a way to disconnect the oxygen lines...
and jump.


Mellody tells us that for Felix, the first seven seconds are everything they should be:


But in second eight, Felix goes into a violently aggressive spin.
In short: he's out of control. 
It's frightening, confusing, upsetting and to be expected.

She tells the audience that 100% of the graduates can plan on having moments just like this.

Felix actually breaks through the sound barrier during this spin.

Felix, like all of us, had within himself the tools to open the parachute -- 
even in the middle of a deadly spin.

When you watch the YouTube video, the crazy spin is barely a mention.
It is edited and highlighted to show the moments of heroism, 
not the moments of
"Oh no! WTF!"

But I'm here to advocate for those WTF moments.

That's where the most learning takes place.
That is the moment where you face your adversity head on and try like hell to open the parachute.

When Felix lands, all is forgotten.
He's a hero...breaking two world-records.
But more importantly, Felix knows he's faced his moment and won.


Last night, Jack brought a pretty small backpack, his passport and his plane reservation to 
San Francisco International Airport, ready to board a plane to Hanoi, Vietnam.

Starting your travel in Vietnam of all places seems like you're asking for 
the death spin right off the bat.

Casually, I ask Jack about this...
his response:
"Yeah, I thought that too but, I'm ready to cut the oxygen lines."

Seems Mellody's words have settled into Jack's heart too.

As we were standing at the check-in counter, Jack was asked to show his passport and visa.
What visa?

He has no visa.

He didn't even know he needed one.

** Sometimes you don't even know what questions to ask.**

This was one of those times.

We sat down discouraged and lost before we'd even begun.
How can we get a visa at 11 o'clock at night?
Do we really have to go to the Vietnamese consulate and wait three days?

Isn't that so 1980's?

Turns out that you can get a visa online and that someone in Vietnam will Live Chat with you and guide you on your way...
they might even help you open your parachute if you let them.

Meandering outside of the international airport, we found a Wallgreens who for some reason was agreeable about taking passport photos near midnight -- more requirements for the must-have visa.

We sprint through the airport.
We run a crazy obstacle course...
and around 12:30 am, China Airlines agrees that Jack does indeed have the needed visa in his email, prints it off for him, issues his boarding pass and tells him to have a very nice flight. :)

He made it past security and onto the plane with time to spare.

He found his way out of the spin.


Around 18 hours later, Jack arrived in Hanoi.
He made it!

Tomorrow, he hopes to connect with friends...and begin the adventure.
Breaking through his own barriers.
Opening his own parachute...and helping others find ways to open theirs.
Noticing the curvature of the earth.
Feeling connected.
Asking new questions that he didn't even know to ask.

He's on his way.
Tonight, I'm grateful for adventure, oxygen, taking the jump and the chance to open our parachutes.

Stay safe, Jack.
Breathe deep.
We love you.