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 time...so 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 hard...no 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.

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.

Why YOU Should Write It Down

Yes, that's a real tree...here in Davis...at 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.

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.

20%

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 Corner...one 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

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.

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.

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,

Violets and Daisies.

*****

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.