Doing It On Your Own

It's been 86 days since my son went away to college.

It's been the longest he's ever been away from me and the farthest he's ever been from me physically.

He's across the country at George Mason University.

He's a California kid - see shorts that he's wearing in November - and he lives most of the time in Virginia now.

There aren't any four year college programs here in California.

Our search for colleges that are created especially for people with intellectual disabilities took us all over the country...but sadly, hardly anywhere in the west.

Every single step I wondered if it was right.

I tried to follow Patrick's lead...tried to gauge whether it was he who cared about college or me.

I wanted to be careful about pressuring him into something that wasn't right...plus I have an intense desire for each of my children to live their authentic life, not mine.

But with someone with a disability, there is usually more parent participation and looking for college was no different.

He applied.

He interviewed.

He got accepted.

And then the hard part began...we had to imagine what life without Patrick in our every day sphere would mean.

We had to be okay with him going.

We had to be more than okay...we had to be excited for him...and shove our fears and worries to the side.

86 days ago he moved into a dorm.

He lives with two other people with disabilities and a typical student who is a 4th year mechanical engineering major...from New Jersey.

His name is Stav.

This was Stav and Patrick on Move In Day...and the friendship has only grown.

What's happened for Patrick is a lot of growth...personally and emotionally. 

But something else has happened...something that you wish for each of your children and almost never can picture for your adult child with a disability.

Patrick has found a COMMUNITY.

He has something that Dr. Erik Carter from Vanderbilt University identifies so well:

BELONGING.

It has developed slowly over these months...but today, 86 days later, it is easy to spot.

When we visited Patrick and were dropping him back off in his dorm, a friend saw him, opened the door to his own room and yelled to another friend,
"Patrick's back!"

Dr. Carter speaks about true Belonging as "an ache when someone is missing" and there it was...

people noticed he was gone...people wanted him back.

He had his peeps.

When we call him and Facetime him, he is often surrounded with people:

He is busy and learning alongside of friends.

TOGETHER they have strength and courage

...they can do the hard things...

they can work through the glitches and figure it out.

Just a couple of weeks ago, we called Patrick and there were four people holding up his foot.

He showed us their faces and we asked what was going on.

Patrick had a blister...a little blood...and his crew was working together to figure out how to help.

Honestly.

Truly.

Really.

This is what we all long for...what our hearts yearn for...

we crave connection.

Today, Patrick flies across the country on his own for Thanksgiving...

only we know the truth.

This HUGE milestone would not be possible if it wasn't for the experiences he has had over these 

86 days.

He's not alone.

He has a friend of mine who is willing to take him to the airport, guide him through security and show him the way.

He has a community that believes in him 

AND OFFERS SUPPORTS WHEN NECESSARY.

Isn't that what we all need?

Watching Patrick has made me more determined than ever to create a community where I live that offers that same beauty of welcome and belonging.

Support and kindness.

Patrick is living a life that is all his...with support from so many.

That's the kind of world we all want.

The kind we all need.

This Thanksgiving, we will count milestones and blessings and be clear...

none of us do this on our own.

We need each other.

Together, with all our foibles and fumbles, we are better.

Grateful doesn't cover it.

The Last IEP or How A White Poppy Blooms

                                        

IEPs suck.
There's no other way around it.

I've thought about this a lot...having been through many, many, many.

It feels like we could make them easier on the mama's heart.
We could just stop talking about all of the many ways the student isn't measuring up and start considering the one-of-a-kind, unrepeatable gifts they bring to the class.

Why must we test and test and test...
using measurement tools that have not been created for people with intellectual disabilities at all?

I'm pretty sure I would fail a test in Chinese...it wasn't made for me.

Why do we force kids with Down Syndrome to take tests that weren't made for them and then act surprised when the scores reveal that the test wasn't made for them?

Why do we make educating children so hard?

Why do we sit as a panel of experts judging, critiquing, analyzing...
while the parent waits with dread at the guilty verdict:
We pronounce your child disabled.

Why do we see disability as brokenness?

Why can't we see the rare gift of the individual?



Before Patrick, I would have been bothered by that bold white poppy.
I would have disgustedly thought it should fit in.

Its difference would annoy me.

Today I see that poppy and cheer...or, in this case, stop and take a pic.

You, Go, White Poppy!

How did you become white?
Aren't you your bad self, standing there so bold and defiant.

Best of all, I marvel at the environment.
Somehow, some way, the circumstances were configured so that this white poppy could bloom...alongside the orange ones.

How can we help our classrooms be like that?

What does it take?

It sure doesn't take a panel of poppies sitting around a table pointing out the whiteness...
or should we say "severe lack of orange-ness"...the deficit in orange is noticeable.

Spoiler alert: it's never becoming orange.

And, yet, it is beautiful and capable of being a white poppy perfectly and
needs no panel of experts telling it what to do.

*****

I propose this for the next IEP you must attend:

Ask them to tell you about your white poppy.
Ask them to SEE the beauty in your white poppy.
Ask them to understand that the white poppy is never never turning orange and yet it must live among the orange bounty.

What can they do to ensure the vibrancy and flourishing of the white poppy
among so many orange ones?

Let's just start by valuing the white poppy.

Let's stop trying to make the white poppy anything else.

Let's just notice the beauty...and work to fertilize the soil and water it enough and offer sunlight.

*****

Today, we reached the end of a long long journey.
No more IEPs and panels and tests.

I can hardly believe it.

Patrick's journey through kindergarten to high school is almost complete.
Because Patrick is graduating with a high school diploma,
he will have no transition services
from 18 -21.

Somehow, miraculously, my white poppy has been able to grow/thrive/learn/live with all the
orange poppies.

Yes, there were people who thought that my white poppy didn't belong...
but there were way, way more gardeners who saw his unusual beauty
and created the climate for him to thrive.

I am so grateful to the teachers who said yes.
So grateful for the willing hearts.
So humbled by the gift of educators who found a way to welcome a white poppy
into an orange world.



Today, my 18 year old son with Down Syndrome signed his own damn IEP.

He shared his hopes and dreams - his strengths and his struggles.
He offered his vision for his future to a bunch of adults.
He acknowledged his heroes and dreamed out loud.

I sincerely doubt if I could have done anything close to that when I was 18.

It was a crystal clear moment of courage and clarity.

I was sidelined and in the cheering section...
as it should be.

*****

I can only echo the words that are at the top:
Believe in your child so much the world thinks you're crazy.
Then believe more.

The problem isn't that we dream too big...
I know that much.

Today, I am grateful for the grace of endings, the blessing of beginnings and the power of prayer.
Lord, hold him close.

The Guy on the Street

Yesterday was a busy day...

for those of you who are moms, you know what the end of the school year is like.

If you're a teacher, too,  well then, these days of May and early June feel like the end of a 

Fourth of July show.

One after another, bigger and brighter, blasting higher and louder, the days pass by...building and building to the crazy feeling of "OK, that's enough now."

"When will it stop?"

And suddenly it does...life gets quiet.

Lunches aren't being made.

Homework isn't being discussed.

Obligations melt away.

Beautiful summer.

Today, was the last day of high school for Patrick and I volunteered to organize and put on the 

Senior Lunch.

I had done it last year and enjoyed seeing these smart, thoughtful teens/adults on the verge of life.

I loved the buzz of both nostalgia and excitement.

So, I ordered the deli sandwiches, filled up the cooler with ice, gather the cookies and grapes and chips and some minimal decorations and got ready.

It was raining in the morning...the scent was lovely...but the vibe was not picnicky.

Oh well.

The message from the school: the picnic must go on.

Rain or shine.

So, I do what I'm super good at...

Long ago, someone gave me this tip and it has really helped:

Act as if, then you will be.

For a new teacher, a new mommy, just whenever you have no clue...

act as if you do.

Soon enough, you will morph into that thing you were hoping to be.

Ready. Go.

Last Day of School Picnic is ON.

The deli sandwiches were piled high.

The grapes, washed and ready.

Chips galore.

Water bottles + grad balloons + random frisbee  = legit picnic.

The lunch goes easily and the grateful teens eat their fill and depart 

to practice for the graduation ceremony.

What was left was plenty of leftover picnic.

I stared at it and was struck by the gift of food.

The gift of community...

and belonging.

The land of plenty.

So obvious...and so much left over.

I consoled myself with the leftovers thinking I could bring it back to school and the teachers could use it the next day when everyone would be in the post-graduation slump.

Packed up the van and headed out.

I wanted to stop at Starbucks on my way to the high school to get some gift cards.

I walked down the street...rushing because of the left overs...needing to get going...when I hear a request coming near my feet.

I look down and there is a man in his 20's or 30's...

dirty, big bushy hair, slumped shoulders.

Looking up.

He asks, "Do you think you could buy me a lunch?"

[I'd like to stop right here and say that never has someone asked me that. They've asked if I had any extra money...or if I could help them out. But, never has someone asked for a lunch.]

Those syllables and sounds of one human to another instead of irritating me, work their way through my ear, pierce my heart and into a brain that stops my forward movement and shakes me awake.

This guy needs a lunch??

In that movie, Inside Out, I imagine my emotions discussing in real time my situation...it is a split second mash up of Disgust, trying to shout down Joy...Sadness wrestling with Anger...and an 

Emergency Fire Alarm going off in there.

WOOOO OOOOO WOOOO OOOOO

I am frozen and I smile so big.

"You need a lunch? Really?"

I look him in the eyes and smile and keep smiling.

I tell him that he is not going to believe this but I just finished up providing a lunch to a bunch of graduating seniors and I have plenty of lunch just for him.

I ask him to walk just a few cars down the street and I open the door to my van and show him a platter of sandwiches just waiting for him...and then he shyly says,

"I have some friends."

"You do??"

"Would they want some lunch too?"

He nods...

and I hand him the whole platter.

I put a bunch of grapes in a bag...some chips and ice cold waters...

and he just can't believe it.

Neither can I.

Or maybe I can.

It feels so right.

So cosmically perfect that I take a deep breath as I watch him walk away.

Then I spy the cookies - hidden beneath some towels.

He needs some cookies doesn't he?

I quick close up my van and begin jogging toward the guy holding a platter shuffling down the street like a waiter who's been ambushed...big bushy hair, dirty jacket, untied shoes.

I catch up to him with my cookies and it's my turn to be shy.

"Would you want some cookies?"

His hands, already too full, magically maneuver different items to create a spot just for cookies.

It was then that I ask him his name.

He smiles, "Ben." 

He offers it like the gift it is.

He smiles again when I tell him my name and for a moment life makes sense.

The weird obstacle course of my days somehow feels in perfect alignment.

How stunning to have too much food.

How understandable to have too little.

How blessed to cross paths in just that moment.

Unloading the food and filling up my heart...

it wasn't really a fair swap.

But the grace goes both ways.

Today, I'm grateful to bushy-haired Ben...who went from stranger to secret friend 

in less than five minutes.

Grateful for too much food that found its way into the hands of people who have far too little.

Grateful for the hopeful whisper that started it all.

Grateful for the heart that could hear it.

Think I'll sign up to do that Senior Lunch next year.

Maybe I'll meet Ben again.

Until then, happy summer.

Cue the fireworks.

Down The Rabbit Hole of Gratitude

Our world is messed up.

Seriously messed up.

We have a president that openly lies...few call him on it.

So truth becomes "fake news".

Down is up.

Refugees are shut out.

Immigrants pushed to the shadows.

Public schools are on notice...maybe they don't need the money that they have...maybe they can donate to a private school in the name of "choice"...another false narrative.

There's no choice when they won't let you in...

except for maybe Historically Black Colleges - touted as the originators of choice by the woman running the Department of Education - who never worked in a public school.

The Environmental Protection Agency...maybe that should be optional.

Maybe not everybody is equal.

Freedom is negotiable...show your documents as you exit your domestic flight.

Let's watch Republicans change 230 years of precedent when it comes to the Supreme Court...
like Veruca Salt, THEY WANT IT NOW, DADDY!

Those Trump-Russia ties are only in your imagination.

Along with climate change.

And what about the immigrants...taken from schools and courthouses, placed in detention centers...
where and for how long?
No one can answer.
No one knows.

It is disgraceful.

As you can see...the world is upside down.

Deep breathing, long walks, fervent prayers aside what is a person to do?

Since books are my happy place, I hunkered down into The Book of Joy - a conversation between the Dalai Lama and Archbishop Desmond Tutu.

It became the salve of my heart.

My haven.

Something I carried with me wherever I went.

I've lived a grateful focused life since I began the practice of writing down
5 things as a project for Lent...in 2003.

I have many many journals filled with those moments of gratitude.

It's a part of the way I see the world now.
Embedded into almost every interaction with others, every small moment with my kids, every ordinary chore like washing dishes or even washing my hands.

I think...hot water, soap, the ability to squish my hands together under the running water, the gift of clean hands to prepare a meal...and away I go. Finished with my chore and filled up with gratitude.

It's a life changing vantage point.

*****

So, reading The Book of Joy, I nodded knowingly when both the Dalai Lama and Desmond Tutu kept circling back to the importance of gratitude.

I got this.
This is something I am good at...
Gratefulness 101 = A+

Only those two don't teach the beginner course on gratitude...they move it deeper...they nudge you further down the road.

You can get your PhD in it if you hang out with those guys long enough.

Like anyone really great in their field, both of these men offer their wisdom freely.
They share.
They work to get the word out.

No price of admission.

If you read The Book of Joy to the end, you will get to their "Joy Practices".

Mental Immunity
Morning Intention Setting
Overcoming Obstacles to Joy
Cultivating the Eight Pillars of joy
Rejoicing in your Day
Relationship and Community - The Greatest Joy

It was here where I tumbled down the Rabbit Hole of Gratitude.

Under Humility - A Lojong Practice - I found what my heart needed that day...
and it has helped in this upside down world every day since.

The book asks you to:
"Reflect on all the people who are responsible for your life."

At first, I was simplistic...thought of my mom and dad and moved on...
to this:

"Think of your parents who gave you life, your teachers who taught you, the people who grew your food and who made your clothes, the countless others who are responsible for your having the life that you have each and every day. Now think of all those who discovered and created all of the things we take for granted, the housing, the crops, and the medicines that keep you alive. 
Think of all the ancestors, who had to live and survive, so that you could be born, who braved enormous hardship so that you could have the life that you do. 
Now think of the family and friends who give your life meaning."

That one paragraph stopped me cold.

In all of the years that I have been keeping a Grateful Journal, did I ever stop and thank the people who came before me?
Or the inventors, the designers, the researchers, the creative artists who have influenced my life?

Not really.

If you stop and try to thank all of these people it can be a rabbit hole of amazing.

It goes like this...step into a public restroom.

Consider:
Who came up with the idea and effort and work to place this restroom here?
Who actually dug the pipes?
Who invented the pipes?
Who mined the copper?
Where did that come from?
Who designed and created the place that collects the water that flows through these pipes?
Who designed the tile on the floor?
Who made the tile?
Shipped it?
Laid it?
Who designed the sink?
The faucet?
The paper towel dispenser?
The toilet paper??
(thank you!)
The blow dryer hand dryer?
The soap?
Who created the first window?
What about the lights?
The actual structure of the building?
Who were the people who worked on my behalf to build it?
Who funded it?
Was it a city?
Who founded the city?

On and on it goes...

Literally, you can get lost in the gratefulness.

This "humility" as the Dalai Lama and Desmond Tutu describe it is mind blowing.

In those moments of consideration,
you see the interconnectedness of our world...
you see the beauty of hard work, creativity, persistence, boldness,
ordinary mankind finding a way to make things better.

If you have gotten down in the rabbit hole with me,
you can imagine what it feels like when you enter a grocery store.
Lately, tears have sprung to my eyes as I stop to look at the produce and consider the many hundreds or thousands of people who have been working so hard on farms, in food production, in food companies, in advertising and grocery stores just to bring me this food.

How about a coffee store?
A library?
A road?
A sidewalk?
A park?
A building?
A garden?

Trying to come up out of the rabbit hole...and into daily life gets harder and harder.
It's like Alice says when looking through the looking glass:

"Well, now that we have seen each other," said the unicorn,
"if you'll believe in me, I'll believe in you."
-- Lewis Carroll, Through the Looking-Glass, And What Alice Found There

I've seen a unicorn.

Or have I?

Like Einstein notices...each of us gets to choose:
either everything is a miracle or nothing is.

Today, I choose miracle.
Ordinary miracle.
Ordinary holiness.

So many gifts freely available down that rabbit hole.
Try it.
Let me know what you see.

Why Poets Should Negotiate Peace Treaties or The Power of a Clump of Words

In the fall after Patrick was diagnosed with leukemia - Fall 2002 - 

I was making lunch for Patrick and listening to CNN.

I heard a lively anchor share a news story in an upbeat voice...

she had something great to share...

and I needed great...

so I listened.

I paused my lunch making and listened:

"The latest research shows that if your child is in day care, 

they have less chance of developing leukemia."

Shit, really?

You mean, if Patrick had been in day care we could have avoided all this?

Really?

I rewound the past few years of Patrick's baby life.

His birth.

His instant diagnosis of Down Syndrome...

not even a single day of life free from that label...

another diagnosis that took only a few days of life: a heart defect.

In need of open heart surgery at nine weeks old...

coming home from the hospital and just wanting to love my baby...

and somehow, some way, tend to my other kids...

day care was last on my list.

Now, just a mere two years later, the leukemia diagnosis and the Three Year Protocol - always sated with capital letters - and the big unknowns...

Life...what does it look like three years from now?

Health? Is that possible three years from now?

Family? What does that feel like three years after this?

Just hours after that CNN report, in the dark of night as I am not sleeping, 

I watch Bill Moyers interview a poet, a Palestinian-American poet,

Naomi Shihab Nye,

and I hear her voice read a poem...

this poem...

and it changes my life.

On.The.Spot.

I'm instantly different because of the words.

I gift them to you, right here:

Kindness

Before you know what kindness really is

you must lose things,

feel the future dissolve in a moment

like salt in a weakened broth.

What you held in your hand,

what you counted and carefully saved,

all this must go so you know

how desolate the landscape can be

between the regions of kindness.

How you ride and ride

thinking the bus will never stop,

the passengers eating maize and chicken

will stare out the window forever.

Before you learn the tender gravity of kindness,

you must travel where the Indian in a white poncho

lies dead by the side of the road.

You must see how this could be you,

how he too was someone

who journeyed through the night with plans

and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,

you must know sorrow as the other deepest thing.

You must wake up with sorrow.

You must speak to it till your voice

catches the thread of all sorrows

and you see the size of the cloth.

Then it is only kindness that makes sense anymore,

only kindness that ties your shoes

and sends you out into the day to mail letters and purchase bread,

only kindness that raises its head

from the crowd of the world to say

It is I you have been looking for,

and then goes with you everywhere

like a shadow or a friend.

*****

Those words made everything in my world make sense.

I clung to them.

Sorrow became a tattoo that I could locate on others...

which allowed me to locate the kindness.

I wish I could convey the depth of those words in the engraving on my heart...

...but as life likes to do,

I moved on.

Patrick survived - truthfully, thrived - through the Three Year Protocol.

I stumbled and bumbled through it...with plenty of bad attitude and crushing worry.

2005 happened and our family cheered.

We snuck away from blood counts and chemo...

we hid from conversations about blood cancer...

and we got away with it.

No one came looking.

2006 arrived and brought its amazing grace, sweet baby Caroline, and life got busy...

with the regular things...

school lunches, soccer practice, homework...

Naomi's poem hibernated within my heart.

2016 arrived with election insanity...

meanness as an accepted way to live in our world...

shutting our collective eyes to refugees...

so, so, so, so many of them...

plugging our ears to the din of the poor, the overlooked, the desperately lonely...

and along comes Naomi Shihab Nye - chosen as the UC Davis School of Education's 

Author in Residence and Words Take Wing Author.

Something within me, sleepy from slumber, awakened.

What?

She will be here...in my orbit...how?

I couldn't fathom the good fortune.

Couldn't take it.

Kept shoving it down...

and then it happened.

December 13th, 2016 Naomi Shihab Nye was hanging out in Davis and our worlds collided.

I first got to hear her speak to student teachers...a room full of worn out beginning teachers...so vulnerable and shy...about 40 of them.

Do you know what she tells them?

First thing.

I know because I took copious notes the entire time she was around...

like a stenographer on steroids...

she said:

"I congratulate you on your life choice to go into teaching and knowing that teaching is the center of where it happens."

*****

You may not hang out with beginning teachers...or any teachers...but I want to stop here and point out how incredibly UNcommon this gift was that she gave the student teachers...why? 

Well, virtually NO ONE congratulates someone on going into teaching.

They get the constant refrain of one of these reactions:

A) Well, you get your summers off, that's awesome!

B) Yeah, I thought of teaching too... (as if it is the best second place option around)

C) Are you sure? You make so little money. 

It's hard work to become a teacher - really hard - and to be met with those three reactions wears even the most optimistic, badass beginning teacher down.

So, to have a world-renown, award-winning poet come in an begin with a congratulations...well, it was a gift. 
A genuine gift. And we could all feel it.

*****

She reads an excerpt from a book called, News of the World:

"Maybe life is just carrying the news...surviving to carry the news...maybe we just have one message, it is delivered to us the day we are born..."

And then she asks us to think about our message.

What is it?

She asks us to write it down.

And she says:

I'm not going to ask you to read this, it's just for you to hold.

She reminds the teachers that

"Creative writing needs to be an ongoing practice - not saved for the last weeks of May."

[Beth, are you listening??]

She makes writing accessible to each of us...

shows the teachers how to help their students write with their hearts...

makes it seem effortless...

like, of course, I could write a poem...

she shares the poems of 6 year olds and Palestinians...

she reminds us that we are Living in a Poem...

and touches us with the beauty of a lemon, a walk with a friend, a note of hope.

Her gift is helping all of us see poetry.

Like hieroglyphics, we all think it's cool. 

We feel a kinship.

We want to know what it means.

Naomi, shows us what poetry is...

and helps us to feel that it is essential.

Like oxygen.

*****

After school, Naomi does another session for the Resident Teachers that host our student teachers.

Her energy is palpable.

Her reverence for the teachers is a gift she bestows on them...

like one of the Three Kings.

She's a bright light.

Sunshine

Starlight.

Spoiler alert: we shared starlight...big time.

She shows us our humanity and the thread that binds us.

Holds it up and then weaves it...

reminds us of our connection...

our beauty...

our messages and stories that we each MUST share.

She reads us poem after poem - of other poets -

friends of hers, mentors.

She shares the story of Juan Felipe Herrera - our nation's current Poet Laureate - how when he was in school, he said no words out loud, tried to disappear -

embarrassed by his inability to speak English - he hid behind a bush and sang a song that his mother and grandmother sang to him during lunch...passing on the other side of the bush, Juan Felipe's 3rd grade teacher...she stopped to listen.

Juan Felipe tells the story that after lunch, his teacher asked him to come to the front of the classroom and sing. He was shocked! Afraid! Disoriented...but his teacher had asked and so he did.

The classmates applauded and the teacher said the words that changed his life.

Five words.

"You have a beautiful voice."

With that little bit of encouragement, Juan Felipe began raising his hand, began seeing himself as a student, began to believe in himself and share his voice.

Sprinkling that story on the teachers, Naomi reminded them that they too,

have a beautiful voice...and beautiful profession...

a noble duty.

A sacred calling. 

She gifted them a chance to see the beauty in their work.

The importance of their influence.

Pausing and reminding them that they change lives.

She had us write "clumps of words" and used those clumps to help us write poems.

We shared them in this small group at 5 o'clock at night...

watching the twilight...

feeling connected.

This Palestinian American poet brought with her a cloud of grace...

peace...

community...

and it was then that I wanted to be in charge of the world.

I wanted to be able to appoint peace negotiators...

what if we had a Palestinian poet, an Israeli poet and a Palestinian-American poet all gather and forge out some peace with a few "clumps of words".

It might only take five words, like it did for Juan Felipe.

It might take twenty five...but we know poets are known for their choosy, careful way with words...we can be sure that unnecessary phrases would be absent. 

No posturing.

No facades.

No misleading text...

everything cut away to just a few words:

Thank you, Naomi Shihab Nye for your heroic ability to 

step out of your line and draw a larger circle.

Thank you for reminding me of the power of a clump of words...

the beauty in Kindness...

the love of the ordinary...

and the gift of a few clumps of words.

My circle is larger thanks to you.

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.

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.