Monday, December 14, 2015

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,
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

Tuesday, November 10, 2015

My Guest House

The Guest House

This being human is a guest house.
Every morning a new arrival. 

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.
-- Rumi

Tonight I read this poem at just the right I'm thinking you might need it too.

Lately, things have been hard.
Not necessarily directly for me or to me but swirling around for people I love,
it's been hard.

Real hard.

And I stand in awe of those people...
getting out of bed,
every single day,
putting their lives on and getting out there.

Sometimes, when the universe forces me to s-t-o-p and wait in a long line or
sit in traffic,
sometimes I tear up at the bravery of every single one of these people around me
cloaking themselves in the love of family or good music or faith or whatever
gets them through that day
and out into this hard world.

It's way around it.

But, then I read Rumi's ancient words
and find comfort.

I've experienced the violent sweep...
a crowd of sorrows,
 as Rumi so heartbreakingly writes.
I'm sure you have too.

And I have to admit that I never thought of that as a guest...or a guide.

Maybe now I can.

So, tonight, I'm grateful for my guest house...
for tomorrow's new arrivals...
and the chance at another day.

And, I'm grateful for you.

Thursday, October 1, 2015

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 who have likes and dislikes.
People who have strengths and challenges.
People who have hopes and dreams and crushing disappointments.


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: 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.

Monday, September 28, 2015

Why YOU Should Write It Down

Yes, that's a real in the Arboretum.

Today I went into Caroline's 4th grade class to share her great grandmother's Native American basket collection.
Normally, those baskets sit on a shelf in our den...
over-looked, dusty, forgotten.
But they tell a tale of weavers and people from long ago...
of a lady who loved to travel...
who collected baskets and carefully recorded the date she bought them, the type of basket and
the place where the basket was from...
that precious information, lost long ago.

I shared what I knew of Mary Compton Goni.
A botanist.
An avid bird-watcher.
An independent woman in a time when there weren't that many of those...
or maybe there were and we just don't know their names.

She created a place of refuge for her family
called Silver Lake.

Today, when I was talking about this amazing lady, I mentioned to the 4th graders that Mary had written a book about her life when she was 91 years old called Mary Remembers.
When Mary approached her 100th birthday, I took the time to read her thoughts and her amazing memories.

What a gift she gave.
Her stories of growing up in rural California and the remembrances of things once so important and now mostly forgotten, gave me a glimpse into a time and place I knew nothing about.
As I was telling the kids, they wanted to check her book out...ready to read her story.

If only Mary Remembers was at the local library.
Or available through Amazon.
Or easy to find on a Kindle.

Mary Remembers was printed privately as a gift for her family.
Mary printed only a hundred copies.

Tonight as I was reading it with Caroline, I turned to the last page...
wondering how she closed such an epic life.

She concludes with this gorgeous poem by Alfred Joyce Kilmer,
explaining that Alfred Joyce Kilmer was an American poet born in 1886 and
killed in the First World War.

I think that I shall never see
A poem as lovely as a tree

A tree whose hungry mouth is prest
Against the earth's sweet flowing breast
A tree that looks at God all day
And lifts her leafy arms to pray
A tree that may in summer wear
A nest of robins in her hair
Upon whose bosom snow has lain
Who intimately lives with rain
Poems are made by fools like me
But only God can make a tree.

This poem, long one of my favorites too, touched me tonight in a hauntingly beautiful way.
I never knew she found solace here too.

Mary's final words to us.
How essential.
Simple and sacred in its truth.

What final words would you choose?

I might have to vote for Mary's.
But that's the fun of writing...
I still have time to tumble a few around, wrestle with a phrase or two...
time to ponder and wonder and enjoy the beauty of words and ideas.
Time to read more poems.
Time to linger in the language.
Time to savor and cherish...
so grateful for this precious time.


I would never know Mary's echo except that she took the care to write it down.
Her experiences, her reflections, her favorite verses shared in print.
A tiny piece of herself.

Why do we hold those so close?

Does your family know your favorite verse?
Your favorite song?
Your favorite poem or book or writer or artist?

Don't you think it's time you shared?

I do.

Wednesday, September 16, 2015

Intention + Action = Magic!

Today I went to the Magical Bridge Playground in Palo Alto, California...
I was tagging along with Torrie Dunlap, CEO of Kids Included Together.

We dished about inclusion and what it means.
We talked mindsets and paradigms.
We lamented how hard everyone makes it...when really all it takes is:
"You wanna play, great! Let's figure it out."

And then we made our way to this playground.
This vision of one mom who happened to have a daughter with some differences.
Olenka's daughter was about 6 when Olenka couldn't shake this idea:
can we build a playground where children of all abilities will be engaged and interested?

What does an accessible playground look like?
Do we really need a playground like this?
Are there really that many kids?

Olenka uses the statistic of 1 in 5.
1 in 5 kids have some type of disability.

That number is larger than the number of women getting breast cancer.
That is super close to the number of second language learners we have in public schools in the state of California. (22%)

It's a ton of kids...
and YES, they need a place that welcomes them too.

Olenka could have just noticed the problem and thought about it.
She could have wished for some place for her daughter, Ava.
She could have just sighed and hoped for someone else to make some changes...

but she didn't.

She searched the internet.
She talked to playground designers and early childhood experts and experts on children with disabilities and then she began to create some ideas of her playground in her mind.
She formulated a plan.
She fund-raised and she got going.

It took her six years to create the Magical Bridge Playground.

Here it is:

Where EVERYONE can play!

A quiet space for children who need to take a break.

Kinderbells...made from used oxygen tanks. 

These swings invite multiple kids to swing together...and have fun together.

The incredible magical harp...triggered by lasers...just makes you want to dance and move to the music.

An ingenious merry-go-round for everybody...a huge hit with all kids.

Some thoughts from The Kindness of my favorite spots.

Olenka's vision focused on kindness...everywhere.
In the rules posted clearly for all to see, within the quotes sprinkled all over, in the opportunities for play for everybody.

Today, on any given day, all sorts of kids with all sorts of family members are having a magical time together...playing and laughing and connecting.

When you go there, you can feel the unity.
You can feel the joy.
You can feel the appreciation of each child.

Tonight I'm inspired, not just by Olenka's intention...
but by her action...
using both, she created some magic...
and we are all better for it. 

Olenka, three cheers for you! 

"Kindness is a language which the deaf can hear and the blind can see." -- Mark Twain

Sunday, August 2, 2015

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.

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.

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 all of these healthy people in this theater beside me, able to stand and clap and enjoy a all of the actors, all of the musicians, all of the light 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, 
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.

Wednesday, July 1, 2015

Sweet Sixteen

I'm 20 minutes away from my son's 16th birthday...
and my 26th wedding anniversary.

The two are forever linked.

Patrick on his 4th birthday...singing and smiling.

Patrick's not home today...he's busy at Camp PALS.
One place I wish I was invited to attend...and one where I am most definitely not wanted or needed.
It's getting more and more obvious with each birthday that Patrick has his own life to live.

Although this is the first birthday where we are not together, I know, can feel in my bones, that it won't be the last.

He has friends to make and loves to meet and purposes to discover.


I want to make a proposition.

I've been thinking about this a lot lately and well, it seems like I need to say it out loud.

I don't think I could become the person that I am meant to be without Patrick in my life...
and I wonder about so so many others. Here are just a few:

Eunice Kennedy Shriver
Jenni Newbury Ross
Rachel Coleman
Eunice had her sister, Rosemary, her sister with developmental disabilities.
Without Rosemary, Eunice would have lived her very privileged life and found a suitable husband and had an adulthood filled with meeting statesmen and discussing politics at fancy dinners.
With Rosemary, everything changed.
Her heart was cracked wide open and she was thrust to the margins, side by side with Rosemary.
She became a champion for people with developmental disabilities and created groundbreaking legislation and visionary opportunities.
She took the shame away and gave people who had never known kindness a taste of dignity and honor...all of this was done with Rosemary in mind.
Special Olympics, Head Start and the Kennedy Foundation became 
hallmarks of Eunice's tireless efforts.

Jenni Newbury Ross has a brother with Down Syndrome named Jason.
She wanted Jason to enjoy the same summer camp opportunities that she did.
So at the ripe old age of 16, she created the first prototype of Camp PALS.
Ten years later, thousands of kids with Down Syndrome have had an inclusive camp experience thanks to her efforts and countless counselors and directors have been infected with 
Camp PALS love.

And what about Rachel Coleman...a musician who has a deaf daughter.
For Rachel, she thought her life was ruined.
How ironic that music -- the one thing that nourished Rachel's soul -- would be the one thing never given to her daughter Leah.
That is until Rachel, working through her grief and fear decided to create some songs especially for Leah using sign language.
Her music became a doorway for Leah and thousands of other children and families.
Today, Signing Time is a PBS show and a successful company...not in spite of Leah...
but because of Leah.

I know that John, my husband, would never have been involved in his line of work, without Patrick.
His success is his to explain and share somewhere else...but it would not be possible without Patrick.

For myself, when Patrick was born, I truly believed that I would never make another friend.
I cried tears of anguish and isolation.
I could feel my world constricting and getting narrower.

I couldn't have been more wrong.

In fact, my world has exponentially grown with Patrick in my life.
My life's work now focuses on including students with developmental disabilities 
in Catholic schools...
and just this past week-end I spent time with people who are dear to me that are from
Napa, California; Pontiac, Illinois; Webster Groves, Missouri; Manhattan Beach, California; Noblesville, Indiana and more -- all over the United States.
And tonight we'll be celebrating with friends from Middletown, New Jersey.
I would know none of these people if a certain little babe had not entered my life in July 1999.

Somehow these people we love make up the secret sauce to our world.
Without them, our hamburgers would be tasty...but would be noticeably less zingy...
pretty bland.


I want to say for the record that my other children have infected me with a love and secret sauce that is all their own...I am the mother I am because of Jack, Mary Kate and Caroline as well and that is not to be tossed aside like the rubber band on the newspaper as if Patrick is the only news.

I'm a different kind of teacher because of Jack...a different kind of woman because of Mary Kate and a different kind of mother because of Caroline.

We can never know where their influence begins...all the threads are braided together.

But my world came crashing down sixteen years ago when doctors told me what I already knew in my heart...
my baby had Down Syndrome...

July 1st, 1999, I was born anew.
Heart cracked open so wide that my vision has forever altered.
I can see those on the sidelines...
in the margins...
isolated and alone.

Like a giant mirror... I can see myself in their reflection.

Happy Birthday, Dear Patrick...may your day today be filled with love and light...
may your birthday song be loud and crazy...
and may you find time to dance...
a toast to YOU, a very sweet sixteen.

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.

Tuesday, May 19, 2015

A Powerful Force For Love

Today I had Patrick's IEP (Individualized Education Plan) for his transition to high school.

I wasn't expecting too much since we had recently had another IEP meeting and pretty much set up all of the expectations for next year and planned it all out ahead of time.
This was just a more formal hand off:
You, junior high group, formally pass the torch to the high school group.

It was an intimate affair.

One school psychiatrist. One inclusion specialist from the high school. 
One junior high inclusion specialist and me.
And the person of honor: Patrick.

So we started out the meeting in the usual way.
Let's list Patrick's strengths.
Patrick, you go first.

Patrick was prepared.
Mike, his awesome inclusion specialist, had worked with him.
He listed off his reading, his love of Shakespeare, his love of drama...
and then he paused.

So the team, ever conscious of time, and the need for a steady pace, stepped in.
Mike asked pointedly: "Any more strengths, Patrick?"

Patrick was thinking about it.
I wanted to jump in and list the many, many strengths that I know he has.
But I resisted.

I distracted myself: I pondered how I would have handled this question 
asked of me in a room full of adults as a 15 year old.
I would have said way more ummmms.

[Once again, I considered how faulty this whole process was...
how contrived and forced.
What 15 year old would want to discuss his or her strengths or challenges in a room full of adults?
What adult would?
Asking a typical student to do this is hard.
Asking a teenager with a developmental disability to do this is Herculean.]

Patrick ummed for only a short second and then he hit it out of the park:

"Oh, and I'm a powerful force for love."

What on earth?
Have I said that anyone.

There was a silence in the room.

I wasn't sure if they had heard him...but Mike did.

I agreed with Patrick and chimed in.
"Yes, he's a powerful force for love...but I'm not sure where that will go in our paperwork."

In my mind, I'm in a trance.

Powerful force for love.
Powerful force for love.
Powerful force for love.

Why, oh why, isn't that measurable?
Why does an ability to move fractions into percents seem to this audience as a greater strength?

Where's our humanity?


What I love about this whole episode is that to those of us who have our days graced with someone with Down Syndrome this whole conversation doesn't seem so far-fetched.
People with Down Syndrome have a remarkable ability to keep it real.
To be candid and spot on.
They get to the heart of a situation.
They speak their minds...
without pretense or hidden agendas.

We just have to listen.

Or their genius gets overlooked...or lost...or worst of all, remains unknown.

No adult took the bait.
Patrick's comment went untouched.

Except for me.

His words just echoed. Over and over.

Powerful force for love.
Powerful force for love.
Powerful force for love.

His words became the haunting opportunity that remains largely missed in our schools.
Students with intellectual disabilities should be,
included in typical classrooms...for this very reason.


And our classrooms need way more love.
Our typical students could sure use some love...
some acceptance...
some social, emotional acknowledgement.

Our schools need this powerful force,
way more than fractions or dates in history or grammar.

LOVE is the answer.


Still, hours later, I'm hypnotized by those words.

Powerful force for love.
Powerful force for love.
Powerful force for love.

Maybe he said them just for my benefit.

They have forever changed me.
Patrick's words have become a mantra...
a challenge...
a request from the universe.
Most of all, they have become my heart's desire...
a daily affirmation...

to live more forcefully...
for love.

Let's be a powerful force for love. Today.