I Have Some Data Too...

Ummm...hello, out there...anybody home??

Can we talk for a minute?

Can we discuss what on earth is going on for teachers right now?

Our world has had an information explosion and schools have been bringing up the rear.

We have old fashioned desks, limited wi-fi, email that barely works, projectors that still use VCR tapes (no joke) or CD's for music and an old computer or two hanging around the back of the room, posing as a computer center.

Of course there are fancy districts with the latest technology.  

Those lucky teachers might have smart boards, doc-cams, the ability to stream something from their computer onto a screen or even a class set of Ipads.

But that's a tiny portion of our school districts.

Many are sadly out of date.

Shame on you Google, Yahoo, PayPal, Apple and the rest.

Have a symposium or some sort of summit, pat yourself on the back for your initiative, your drive and your stunning intelligence and for God's sake get some leadership going.

I know, I know...not your focus.

But you sure love to provide the data, don't you?

I have this job where I get to go around to all sorts of schools in all sorts of districts and see what's going on.  

I work with the best teachers who mentor my student teachers.

It doesn't matter how fancy the technology, the size of the cafeteria or if the school has a garden, a PE instructor, or a science lab.

It's the teachers that matter.

In the poorest districts, in the richest districts and everywhere in between the divining rod of excellence is the teacher.

And, boy, am I privileged to see excellence in action.

I'd like to be the Lorax and speak not for the trees (they seem to have plenty of people wanting to talk for them) but for the teachers.

The-day-in-day-out-nitty-gritty-not-glamorous warriors that take our children and love them like their own. They plan, teach, re-teach, assess, reflect and just generally obsess on how to help their students succeed.  These people come in early, stay late, use their own money, attend conferences on their own dime and with their off time and they love it.

They sign up and stay in the trenches for decades.

Not for any reason other than that is their life's calling.

They care.

They take pride in their work.

It matters.

Guess what has happened?

We've turned students into a commodity.

We can collect data on them.

Like the early cave man, we are hypnotized by the fire we've just discovered.

We can't stop staring...and we are getting burned.

We are drowning in data.

Oh, it's so very sexy.

Bar graphs.

Line graphs.

Pie charts and percentages.

Can you really measure a six year old like that?

Maybe.

But it better be a damn good test.

And trust me, I haven't found a single one that slides into the "damn good" category.

Most are junk.

Testing on standards that aren't used anymore.

In ways that are pedagogically unsound.

Most of the numbers are meaningless...but they are numbers and that makes them powerful.

Very powerful.

So powerful that I sat in a lunch room today with two stellar first grade teachers, one with 26 years worth of expertise and one with 28 years, who were shaken to their core.

These two are no joke.

They embody every single accolade I can  possibly think up:

selfless

hard-working

tireless

a true advocate for every child

generous

kind

child centered

professional

miracle worker

Those two people got data from their principal that gave them a sleepless night.

Their scores in literacy were down.

Way down.

The lowest in the district.

Alarm bells went off at the district level.

The data had spoken.

One of the teachers actually said, "Yesterday was the worst day of my teaching career."

No one bothered to wonder out loud why that data was so off.

Like the proverbial 5th grade science experiment, nobody bothered to ask a question.

Or hypothesize.

Or just say...sorry, that doesn't make sense.

The data had spoken.

Ummmm...yoooo hoooo....can you all pause for a minute?

I have data too.

My data says that after 28 years of learning your profession you actually know something of value and it's damn hard to measure.

These two are experts in teaching reading, writing and math but they are living sensei in the bigger picture.

They know how to comfort a child.

They know how to inspire a child.

They make school magical and wonderful and creative and fun.

They know what to do for second language learners that do not know a single word of English but get tested in it.

They know how to help the child whose mom "just forgot to pay that bill that keeps the lights on".

The child who's hungry.

Or dirty.

Or hungry in their heart.

No test measures those things.

There's no data on that.

And guess what??

What those teachers do day in and day out on behalf of the most vulnerable, voiceless victims in this whole data game is nothing short of heroic.

Shame on administrators who believe the data first.

Shame on parents and cities that take pride in high test scores when in reality all it measures is privilege and access to opportunity.

Shame on testing companies who make gobs of money convincing districts that they don't need field trips but instead a whole lot more tests...that measure what exactly?

Literacy?

Numeracy?

Character?

Honesty?

Grit?

Courage?

Creativity?

Spoiler alert: There's quite a bit of teaching and learning that is hard to quantify.

And I would argue that the non-quantifiable things are truly what matter most.

How do you measure a teacher who won't give up on a child?

A teacher who believes that every child can learn?

A teacher that can transform the way the child sees himself?

Tonight I am grateful for two very special teachers and the tidal wave of other similarly fantastic teachers who never hear this:

YOU ARE DAMN GOOD AT YOUR JOB.

You rock.

You stay strong and drown out the nay-sayers.

Own it.

I am proud to know you and see your excellence in action.

No test can measure what I know to be true.

You are what every educator aspires to be.

And the test is what has failed, not you.

The Egg and The Thank You

So a few weeks ago I was on the phone with my husband at midnight and I heard a loud knock on the door.

I asked my husband to wait and I went to the door.

My dog was growling -- a low, guttural sound that he rarely makes.

Awesome.

The dog is freaked out.

I opened the door, stepped outside and saw nothing out of the ordinary.

I asked into the darkness if anyone was there.

It was quiet.

Buddy was still not quite right and about 20 minutes later I opened the door again to prove to him things were okay.

He sniffed around, marked his territory and settled back into his nighttime sleepy fluffball position.

I didn't think about it until the next day.

I went upstairs to open up the windows to let in the cool morning air before the heat of summer pressed in...

and I saw it.

An egg smashed on my window.

I opened the window and looked around.

Suddenly I'm Sherlock.

I search every other window in my house.

I patrol outside.

I'm convinced I've been egged by haters.

But why?

What's controversial?

What have I done that would need an egg punishment?

I thought perhaps Mary Kate had said something at her work.

Could Patrick have bothered someone?

Who throws an egg at someone's house?

I know it sounds silly, but I spent my day obsessing on the egg.

I felt bruised.

Embarrassed.

Guilty.

Dirty.

Ugly.

Ashamed.

Like I had done something wrong.

Like someone I loved had done something to deserve it.

John blew it off as a kid-thing.

He's so much better at being drama-free.

It was a summer day -- and the school-is-happening-soon clock was ticking.

I knew I needed to break out of my funk.

I did the take-the-dog-for-a-walk-and-ignore-it thing...

this tactic is very effective.

Until you get home...and see bits of egg shell mocking you on your roof.

I couldn't shake it.

Through lunch, grocery shopping, normal summer fun with the kids and even through dinner.

I had egg on my face.

Finally, it was time to walk Buddy again.

I asked Caroline to come along (to cheer me up) 

and with a dog on a leash and a kid holding my hand I was ready to face the mean old world.

I had my armor on after all.

I got to the end of my walkway and stopped.

Someone, a stranger, had taken the time to draw three chalk flowers next to Caroline's big flower on the sidewalk and next to those three flowers the words: thank you.

I was floored.

Who could that be?

I hadn't revealed my egg shame to anyone.

No one was around.

Those flowers weren't there this morning.

Where had they come from?

It actually didn't matter.

It was my chance to exhale...for the first time all day.

I just stared at those flowers and smiled...a really big, goofy smile.

A tiny act of kindness.

The tiniest.

Three flowers and a thanks washed away that gooey egg -- a sprinkle of goodness 

straight from the universe.

So tonight I'm grateful for the smallest of things, the "everyday deeds of ordinary folk"...

they do, indeed, keep the darkness at bay.

Your job tomorrow: do a small thing.

One simple act of kindness and love.

It's so fun to consider...so many options.

Go ahead.

I double dog dare you.

Sprinkle the world with some love.

We all need it.

You never know what you might wash away.

What I Want You To Know

***This is an open letter to a couple I met for dinner last week who are expecting their first child who happens to be prenatally diagnosed with Down Syndrome and in that moment, my mouth clammed up. I talked about sauvignon blanc and bike riding.  I had so much to say that I had to just wait until it could bubble out.  Right now seems like a good time to let it all come tumbling out.**

*****

I have so much on my heart right now.

So much I want you to know.

First off, I don't even know you but I am proud of you.

YOU CHOSE LIFE!

When the world was telling you otherwise.

When the world was spitting fear and prejudice and ignorance...

you could drown out the noise and hear that little heartbeat from within whispering 

the goodness, the miracle, the truth that you could trust.

It is all going to be okay.

You got through the first really big hurdle that 90% of the population doesn't make.

You chose life.

You won't regret it.

Ever.

Because by choosing life...

you really chose love.

And I don't care how cliche it is...

love truly does conquer all.

If you make a choice out of a loving place,

you will always be right.

And if you choose fear,

most of the time,

you will be wrong.

Simple as that.

This precious baby is welcome and wanted and loved.

Right now.

In this moment.

And that is enough.

Having a baby is miraculous.

You get it.

I suspect, you are going to rock this whole experience.

Seeing your bright eyes.

Hearing your hopes and plans.

Watching you together...

just made me want to start climbing that staircase in the Rocky movie and sing that song.

You got this.

So what do I want you to know?

Don't listen to experts.

Don't listen to professionals.

You know best.

Oh wait, clearly, you know that already.

Ok, next...

Listen to your heart.

Follow your gut.

Open yourself up and the universe will guide you.

Oh, wait, you've already done that.

Clearly, you're awesome.

I guess I want to tell you to hold that baby close.

Snuggle and cherish.

I have no doubt you will do this...but do it more.

It just goes too fast.

Your baby is good enough.

You are good enough.

And somehow 

good enough mom and dad + good enough kid = extraordinary family

I don't know the chemistry...but you got it.

Laugh a lot.

Poop, and fatigue, and nursing and babies in general make for crazy funny moments.

My husband brushed his teeth with Desitin in a sleep-deprived fog.

He knew that glossy shine wasn't quite right but he didn't slow down enough to question the fact.

He paid a white-toothed-slime price.

But we still laugh about it many years later.

And that leads me to quite possibly the very best gift this baby is going to give you...

the ability to slow down.

Your baby's pace will be exactly right.

And because he's first, it will be unfolding without any kind of toe-tapping antsy-ness.

One day, that baby will smile...angels will sing, goosebumps will appear and it will be like nothing you've ever experienced.

Each milestone will be savored and treasured.

Every step a victory.

Your baby will allow you to settle down, calm down and just be present...

for his presence.

And that is a gift I wish every person on the planet could know.

Slow is beautiful.

That is my take away.

Slow it all down.

Take a lot of pictures (and videos).

Read a whole bunch of board books.

Shake some rattles.

Stare a lot.

Stare some more.

Because there is no doubt that you are privileged to witness something very special...

and it won't be lost on you.

You are brave, adventurous, loving and accepting.

In exchange for all of those wonderful qualities, you get a son.

Seems pretty fair to me.

You're my kind of people.

I'm honored to know you.

Welcome home.

Hanging Out With Eagles

Today was another one of those hold-your-breath-its-really-happening days.

I've been letting Patrick hang out on his own at home.

Just like with typical kids, there's no manual for kids with Down Syndrome.

No rule book.  No cheat sheet.

I really wish there was, trust me, because most of the time my parenting tactic is: 

guess --> see what happens and hold your breath --> adjust.

I try not to be too crazy cautious with Patrick.

That alone is a leap of faith...and a generous reliance on the rest of humanity 

out there in the big, bad world, 

and it's oh so hard.

Not hard for him by the way...just hard for me.

Anyway, he's been on his own at home, probably watching too much TV but learning to have independence.

Today I had to run around and do errands and thought that might be a good chance for Patrick to hang out on his own.

Every other time I've left him, I've found him watching TV or on the computer when I get home.

Today I found him cooking.

He made his lunch.

It was a gourmet sandwich of tuna and turkey. 

He found some tortilla chips and some cream cheese and thought that might be a good combo as well.

When I got back, he had that smile on his face that feels so great to see.

The I-did-it-and-I'm-awesome smile.

As a parent, there is nothing better.

When they're toddlers or preschoolers, you see that look all the time.

As a school age child, occasionally you see it and boy, does it feel amazing.

As your kid gets older and older, it's like a rare sighting of Sasquatch,  you're not even sure if you've seen it...many, many times, their eyes are down and they are smiling to themselves...sometimes there's a perfect moment and your eyes catch each other and you telepathically high five -- with a goofy grin across your face.

Maybe it's because every single step forward is hard won for Patrick, 

or maybe it's because I just don't have any reference points on my trail...

no cute pile of three rocks showing me I've made it to the next spot,

for some reason, the most basic steps forward to independence are marvels and wonders.

Every time, it makes me value my own independence.

It's pretty amazing I can live on my own, navigate the world, pursue my dreams and help my kids and John to work toward theirs.

I don't need much support...but maybe that's because I've been allowed to hang out with eagles my whole life...

there was no question I would fly.

But when you're born with a disability, people want you to hang out with the chickens...

they want you to earn your way to the eagle's nest.

You need to prove your worthiness.

*****

Sometimes, you don't even get to hang out with chickens...you are thrown away, discarded and worst of all disregarded.

Here's a real life example of what just happened to a baby that had the audacity to be born with Down Syndrome while his twin sister did not.

*****

So today, Patrick made his lunch, watched the clock, got his stuff together and 

headed off on his bike to camp.

I hounded him to make sure and text me when he got there.

He promised he would,

and he did.

Later he texted me this costume pic...technology is amazing.

...another trail marker...

three pretty rocks.

Presume competence.

Offer supports.

And then,

...hang out with the eagles, my boy...

Fly, Patrick, Fly.

In Praise Of Those Pesky Dandelions In The Middle Of Our Manicured Lawns...and Other Thoughts On The Pursuit Of Pefection

Stop for a moment and take a look at this...

weed?

piece of perfection?

natural mystery?

perpetual propeller?

We pass it by every day.

Sometimes we are annoyed with the dandelion fluff as it teases us, even mocks us, as it stands so tall among the well-behaved blades of grass...daring you to try to remove it.

Good luck!

Just by the very action of plucking it, you spread its seeds...such a clever mode of transportation.

Maybe you could pick it and make a wish...transporting yourself to a more carefree chapter in time.

Or you can wish it didn't exist with its bold brand of yellow...wish it away...and there's always the option of raining down a little poison.  

Round Up Ready.

So much of our life is just like this...

trashing the miracle...

wishing it away...

trying to change it...

and pouring on the poison.

We poison ourselves with the pursuit of the perfect lawn, the perfect abs, the perfect wrinkle-free skin and see no joy in any of these gifts.

As I watch all of my neighbors kill their lawns because of our severe drought, I sure wouldn't mind a lawn or two with dandelions.

As I notice people with so many health problems, I'm pretty happy with my abs of imperfection.

As I slather on the sunscreen around my eyes, I can't help but feel those laugh lines as they get deeper and more pronounced...almost everyday I wonder what I've been laughing about.

Too many good memories.

So fun to imagine which joke, which comedy, which unexpected joy made those lines.

I must have been having one heck of a time along the way.

Perfection is a hollow pursuit.

We know this.

In our heart  of hearts we feel its truth.

Yet, still we let the illusion allow us to abort babies that we wanted but have suddenly been identified with an extra chromosome.

No longer satisfied with ordinary seeds we literally add toxins to the DNA of seeds to resist the pesticides and call them natural.  We praise genetic engineering while pouring on even more pesticides on our crops.

Not good enough.

We berate ourselves internally for our "muffin tops", our "wobbly thighs", our age spots, our gray hair...never cherishing the stories behind each of these changes.

We can't have our houses clean enough, our clothes pressed enough, our children well-behaved enough or our spouse sexy enough.

We are always asking for more.

Me included.

Which brings me back to the dandelion.

Thank God for them.

Thank God for mine.

I'm done with the poisonous lies.

Done with the fractions of truths.

Done with it.

Today, I was reintroduced to a piece of art that I learned about in 2006.

It's called "Sam and The Perfect World" by Peter Lentz.

In 2006, it won the National Portrait Gallery's Outwin Boochever Portrait Competition.

Here are Peter Lentz's words:

"My wife Rosemarie had just given birth to our son Sam, and although he appeared perfectly healthy, something, nevertheless, didn't seem right. There was an awkward silence in the room, no words of congratulation or comments about how cute he was even though he was cute. Five minutes later the diagnosis was given: Sam has Down Syndrome. "Are you going to keep him?" a nurse asked. Later that evening someone else came by to "console" us. "It's every mother's worst nightmare," she said.

Welcome to the world, Sam.

In America today, perfection is highly valued. We dump loads of chemicals on our lawns to try and get rid of every weed, every dandelion. Models and supermodels are tall, impossibly fit, their clothes stylish and wrinkle-free. Images like this tend to change our perceptions, our ideals, until finally they leave us looking around at the peeling paint on our own houses, and our less than fit bodies, and it leaves us wanting.

Perfection, I would submit, is overrated. And besides, I like dandelions.

In the painting Sam assumes the role of presenter, host, even tutor, of this most revealing examination of the civilization man has made for himself. Sam is not society's accepted definition of perfection. In spite of that, or perhaps because of that, he really does have an important message for everyone to hear."

Umm, I like dandelions too.

I'm blowing it off.

Making my wish.

Enjoying the bright, bold yellow in the thick of the green.

Perfection deserves some Round Up.

Not us...not a single one of us.

Your job today: accept and love the people in your life, 

most especially, yourself.

Anything Can Be

Anything can be.

Anything.

Tonight is proof.

5,445 days ago a little baby was born.

He had Down Syndrome...a heart defect and later leukemia.

5,445 days ago I didn't know a thing.

I was biased and prejudiced.

Flattened and broken.

I believed the mustn'ts and the don'ts.

And the universe handed me a child...and his soul whispered to me,

"Anything can be."

I didn't know what to do or how to be.

But my older two kids did.

They knew how to love and they poured it on thick.

They were delighted with this baby filled with shouldn'ts and won'ts.

They knew the secret:

Anything Can Be.

Slowly.

Following the path of love and the glittered steps of preschoolers who knew best, I learned.

I learned that mothering this new baby was the same as mothering those other two...

love, belief, faith, being there....day in and day out.

*****

Recently I read this essay about wishing out loud.

I loved it.

In it, Mitchel encourages you and me to: "Share your wishes freely to anyone who will listen."

I've been doing that for awhile.

Wishing out loud.

LOUD.

Please, please, please let all children learn alongside each other.

LOUD.

Back in 1999, when Patrick was born, honestly, it felt like my wishing flame pilot light had gone out.

I didn't know what to wish for.

I felt alone.

Isolated.

I had no road map...and for someone who used to pour over the giant world atlas, that felt weird.

What does this new world of mine look like?

Who is with me?

Am I as alone as I feel?

*****

5,445 days have gone by.

The baby has gotten bigger, grown stronger, and is sitting on the edge of manhood.

He's reading, writing, passionate, funny, exuberant and his very own self.

Incomparable.

Inexplicable.

Indefinable.

Miraculously irreplaceable.

I could never have known his place that he alone would carve out for himself in this world of ours.

I could never picture his truth.

All I could do was live alongside him and show up each day...learning the lessons meant for me alone.

5,445 lessons...perfectly circular...perfectly balanced.

Tonight it all came together.

Tonight Patrick graduated from 8th grade...from a Catholic school.

He's the first in the diocese to be fully included in the regular classroom,
learning alongside his typical peers,
attending the same school as his big brother and sister.

The first.

In blue cap and gown he walked in holding a lit candle.

Light in the darkness.

Another reminder.

Anything can be.

He strode up to receive his diploma.

He sat back down and listened to the award winners.

Award winners for art, math, science, social studies, PE, literature.
His name wasn't called.
It didn't matter.
The award for most improved in Computer Class came and his name was announced.
He popped up -- eager to be singled out and awarded.
It felt good.
We moved on.

Suddenly, the teacher mentioned a special award.
She spent time explaining the award.
She detailed the recipient.
Describing attitude, effort and perseverance...lessons taught, day in, day out.
Patrick's name was the one on the award.

And like a crazy dream, he leaped up to receive the award
as his classmates cheered.
His classmates stood up.
The audience stood up...
the room transformed into a full standing ovation
I just sat there...
until the energy of the room pulled me up and I turned to my mom and asked,
"Is this real?"

I couldn't take it in.
Couldn't really make sense of it.

Anything can be.

This child of mine -- so broken to the outside world -- was fully seen, fully recognized,
fully accepted on this day, in this moment, at his school.
He was worthy.
He was good enough.
In fact, he was admired and awarded.

And in this moment, in this dream-like world, we were one.
Every single one of us in that big church belonged.
We were valued.
We were loved.

The message was loud and clear.
You, Patrick Foraker, have taught us something.
Something we didn't know until you showed us.

There will always be mustn'ts and can'ts.
Don'ts and wont's.
None of it matters, friend.
Anything can be.

So today I am grateful for this moment of hope and encouragement.
Profoundly grateful to the many, many encouragers who met us on this path.
Grateful to Sarah and Steve and Ashley and the many priests, principals, teachers, aides and staff who found a way to make anything be real.
Grateful for ordinary holiness, sacred acceptance, and this moment right now.

Anything can be.

Dreams come true.
Share your wishes out loud.
Wait.

Watch what happens in a few thousand days.

Happy Graduation, Patrick!

Tea for Two

"Enjoy life sip by sip, not gulp by gulp."

-- The Minister of Leaves

A tiny taste of heaven.


Do you have a secret place?
A spot you unknowingly find your way to when you need a rest or need to take a deep breath.
I have several secret spots that refuel me, that calm me, that bring it all back to the real stuff that matters.

When the world feels too crazy, I make my way to one of these places and
s-t-o-p
and breathe...big, long, deep oxygen-rich breaths.

It's not so serious.
No to-do list is that important.
It's all going to get done anyway...
who cares if it's not all done at the exact perfect time in the exact perfect way.

This, this right here -- is way more important.

And that's how I was feeling last Saturday.

I had chores to complete.
Work to finish.
Emails to return.
And a presentation to get done.

None of it mattered.

I woke up on Saturday and decided to share my secret place.

Caroline was ready.

So I zoomed out of my pj's (which really isn't-Saturday-morning-like-me), showered and got ready and whispered to Caroline...
"I'm taking you someplace special this morning, just me and you.  Will you get dressed?"

She needed no prompting...she got herself together in a flash.

We completed a tiny subset of the regular Saturday stuff that must get done and headed out...on bikes.

*****

[Now I must add here that I've been wrestling with the constant intrusion of my cell phone.  I've been feeling like it's been owning me rather than the other way around.  And then a tiny little seed sprouted in my mind...I know it shouldn't be too crazy of a thought...but sadly, it was for me...I decided to make my cell phone optional.  I was going to make Saturday (and maybe even Sunday if I got good at it!) my cell-phone-free day. And since that little thought just kept going around and around in my head, this very Saturday seemed like the day to try.  So, I told John that I was going to be out of touch for a few hours, left my cell phone on the counter and away we went.]

*****

It was the weirdest sensation!
I felt naked and free and vulnerable and information-less and
finally, finally,
blessedly undivided.

I could attend to this moment, right now.

Distraction-less.

Focused.

Centered.

Attention squarely on the important things of the moment:
this little girl, seven turning eight,
what table to choose in this darling garden patio?
what tea?
should we get a scone or another type of pastry or the fruit cup?
what is Devonshire cream anyway?

how are you?
what have you been noticing? or thinking? or hoping?

I began to notice her eyes;
the way she fashioned words;
the grown-up way she was sitting;
the way she perused the menu.

Time, so often my enemy, stood still.

Without my phone to capture the moment,
I took snapshots in my mind.
Froze it...right there.
Noticed the sunlight.
The tiny purple zigzag fringed flowers in a tiny vase on the table.
Her eagerness to watch the sand timer count out the three minutes -- the perfect amount for steeping the peach tea that we had chosen.
Her willingness to pour our tiny glass chiseled cups carefully full of the golden elixir.

We marveled.
We sniffed and savored and stopped.

We giggled at the dollhouse sized wooden spoons that were what allowed the Devonshire cream and jam to make it to our scones.
We talked and talked.

It goes without saying that my secret place has become her secret place...and, as is the worry with sharing secrets, she loved it so much she wants everyone to go there.
Immediately she asked if Daddy and Patrick could come next time.
How about her cousins?
Maybe this was a place for a birthday party?

I just smiled...and told her sometimes secret places have to be kept quiet and shared carefully.

My answer to every question was Cheshire Cat confusing...maybe...we'll have to see how it goes...
maybe.

Right now I want to hold it close and keep it tucked out of sight.

But I know it won't last long...
she's itching to go again...trying for a second Saturday in a row.

I know she loved the tea and the garden and the Devonshire cream but I really think she's asking for more undivided attention.

I'm going to honor that request...try even harder...and I admit, I've done a poor job this week.
But, there's always Saturday.

Glorious Saturday:
 A pot of tea
Some denim blue eyes
Time, lingering and lounging like a friend,
And the supreme comfort of really being present
as my present.

No One Is Alone

"Sometimes people leave you halfway through the wood.

Others may deceive you.

You decide what's good.

You decide alone.

But no one is alone."

--Into The Woods

So tonight Patrick had to write down all of his various entries that would be placed under his name on his yearbook page.

He's in 8th grade in a K-8 school...the top of the heap.

It's the big time.

First he had to list his interests.

Basketball, swimming, drama, musicals, music, traveling and Broadway made the list.

He wanted to add that he was a "love expert" (his favorite phrase from the movie Frozen, other than "Let It Go" the Oscar award-winning theme song from it) but I told him that it would be vetoed by the yearbook editors.  

They're picky this year.

Next, he had to list people he most admired:

Sarah, Steve, Ashley, mom and dad. Jack, Mary Kate, Caroline and Miah.

First off, can we chat?  Are John and I a two-for-one deal??

Are we not separate entities?

Not in Patrick's mind on this day or so it seems.

Miah's name made me smile...Miah placed Patrick in her list of people she admired in last year's yearbook.  I forgot that kindness but Patrick did not.

Finally, we had to think of an inspirational quote.

We started talking about favorite lines from movies and plays.

He was really pulling for one of the many funny lines from Frozen by Olaf the snowman but I told him those yearbook editors wouldn't go for it.

So he turned to his old stand by, perhaps his favorite Broadway play of all, Into the Woods.

Just like that, it appeared.

Like a comic strip speech bubble above his head:

"No one is alone."

As soon as he said it, he knew that was it.

He tumbled and tossed some others around:

"Opportunity is not a lengthy visitor." being a solid number 2.

But he just kept coming back to the fav.

No one is alone.

Truly, no one is alone.

This child of mine, so divinely placed, just knows how to get to the heart of what matters.

I cried in the days after Patrick's birth, believing, however erroneously, that I would never make another friend...that Patrick was my barrier, my wall, my fortress.

Honestly, I couldn't have been more 100% wrong.

I would laugh at the old me...right out loud in an exuberant way...knowing the life I have right now...so full to the brim with new amazing, heroic, inspirational people that have crossed my path all because of Patrick...if I didn't cringe at the sheer number of abortions caused by that same fear and prejudice.

I want you to know..no matter how afraid you are...no matter how unsure...no matter what is going down in this difficult journey we call Life...that Patrick speaks the truth.

No one is alone.

You may feel isolated.

You may feel like a freak.

You may feel unlovable, unknowable, unforgiven but that is just the story you tell.

As they say so wisely in Into the Woods:

(and perhaps this is my favorite quote)

Careful the tale you tell,

that is the spell.

Children will listen.

So tonight, another sprinkle of glitter came my way on my path of Life.

More sparkle...more light...more love.

Once again, I thank my teacher...

or should I call him my bridge, my crossing, my light at the end of the tunnel.

Whatever the metaphor, in this month of celebrating people with Down Syndrome, 

tonight I am profoundly grateful for my front row seat.

Practice Kindness, Choose Happiness

I have this exact image and quote on my cupboard...staring at me everyday...

reminding me...prodding me...challenging me.

Never in my wildest dreams did I think I would ever get to see this man in person, 

but today I did.

I had the joy of witnessing the Dalai Lama's effusive, kind, tender-hearted presence at Santa Clara University.

Wow!

My first take away from him was his ability to transcend time.

He had all the time in the world for every person.

No rushing.

Nothing but complete care and acceptance of the moment.

Every person was someone sacred.

Every moment mattered.

I know this man is called His Holiness by all sorts of people and I wonder:

is it a chicken or the egg kind of thing?

If you call someone holy do they rise to the occasion?

What would happen if we started thinking of ourselves as holy?

Would we pursue mindfulness and meditation and compassion so zealously that it would become real?

I wanna try that experiment on myself.

I'll keep you posted. :)

My second take away was the way he spoke about his mother.

He is the youngest child in his family. He felt his mom gave him nothing but affection.

He talked about how she would put him up on her shoulders and work in the fields and just enjoy his presence.  

He mentioned that there are seven billion people in the world and that all of them need this level of a mother's affection. 

His quote: "We need a special effort to build the feeling of affection for people who do not have it so therefore warm-heartedness or affection is very very important and an obligation."

 He wondered what our world would look like if everyone was given this affection.

It's a good question.

And also a good reminder.  

We all need affection and compassion, every day, all the time.  

No one earns it.

His biggest message was that compassion and kindness must be taught.

We must start with the littlest children and very carefully and intentionally teach this and then gradually move to the older children and keep at it...demonstrating kindess and compassion daily.

He maintains that the more compassionate mind = the more calm mind -- which creates more self-confidence, inner strength and less stress.

He reminded us of something that we intuitively know but never consciously think about:

self-centered = more stress

"Compassion brings inner peace and mental comfort."

Finally, he spent the last few minutes almost talking to himself.

He told each of us that we needed to go inward and know our conviction for ourselves.

We need our faith to be part of our life and part of our decision making.  It is only with this inner conviction that we can withstand the changing forces of our life and the confusing moral ambiguities of our time. He pounded his heart several times very forcefully, making his point...go inward and know yourself, your convictions, your priorities. 

In a nutshell: live an authentic life.

His giggle is what will linger in my mind the most.

All of the adversity he has faced...all of his own life lessons and at 78 he has a lot...have led him to be full of joy and ready to giggle.

His energy is contagious.

The event had a group of young children singing...their angelic voices filled the arena.

Their school's mission statement:

practice kindness, choose happiness

That's enough.

Let's do it.

Salt Water

"The cure for anything is salt water: sweat, tears or the sea."

--Isak Dinesen

For the last few days, this has been my view.  That isn't enhanced.  It isn't altered in anyway.  It was taken with an Iphone and the glory was captured in miniature...but the beauty is so stunning, it comes shining through without effort.

I'm at the beach.

I was born in Pensacola, Florida.  

As far as I can tell, I spent only a couple of years there and then moved around to various locales in Iowa, Illinois and finally California with my family growing up.  I attended college in California's central valley and have lived pretty much right around there my entire adult life...but I've always had a tug, a strong one thats just keeps getting stronger, pulling me like a magnet, to the ocean.

I've always loved the ocean -- enjoyed our honeymoon in Bermuda -- but never could explain its magic.

It was calming, soothing, refreshing, invigorating, beautiful but most especially healing.

When Patrick was sick with leukemia, he had 60+ days of no detectable white blood cells.

He was not hospitalized but he was house bound.

He could be around no one.

He was isolated and by association so was I.

At first it was no big deal...I wandered around with Patrick in my car and would find empty parks.  Zip him out of his car seat, let him swing and play by himself, and hop back in.  Usually that effort would wear him out and he would nap, I'd listen to music and I would muse on the starvation of the soul without connection to others.

I became acutely aware of the poison of solitary confinement.

I related to castaways alone on an island.

I felt imprisoned when truly the only prison was in my mind.

And then I stumbled on an idea...I could take Patrick to the beach.

While the other two were in school, I would pack a picnic, drive an hour and a half and head to a lonely strip of sand with Patrick.

The sea gulls would be our welcoming committee.

The waves our hometown band.

The sand and shell collecting and castles and other creations would be our distraction from white blood cell counts and the language of leukemia.

It worked.

Like some sort of alternate universe, at the beach, we were healing and whole.

We were refreshed and vitalized.

Baptized in a way.

Over and over again.

Slowly, those 60 days chipped away...Patrick's counts got better and he could be with humanity again.

Most especially, preschool!

We've visited the beach in good health and in celebration many times since.

But, when my mom got diagnosed with lymphoma and didn't want to deal with the horrible news...I headed to the beach.  I put on my same T-shirt, made my same picnic lunch but this time I had a little companion named Caroline and she made the joy of the beach all her own.

I can't explain it's majesty.

I try to think of people who are land bound and have never seen the surf:  

never felt the waves tickle your toes, bury them and reveal them all in one fluid motion.  

I try to imagine never knowing this healing balm but I can't.

I like to think that my beach connection was created at birth, on that panhandle long ago.

All I know is that when I am here...like a marriage, in good times or in bad, in sickness or in health, for richer or poorer, the beach is my steady companion, constant and unyielding, always comforting.

Its rhythm, its cleansing presence, its energy is now a part of me.

I'm getting closer and closer to finding a way...demanding a way... to stay here for bigger and bigger chunks of time.

It will take sweat and tears, I am sure...other gifts of salt water...but I am willing.

My new year's resolution: find new beaches.

I can only smile at the opportunity of 2014 and share my grateful heart.

Life is rich with ordinary magic.

Find yours.

The Map

"There is something beautiful about all scars of whatever nature.  

A scar means the hurt is over, the wound is closed and healed -- done with."  

-- Harry Crews

I don't often see Patrick without his shirt on.  He's 14 years old and into privacy.  He takes his own shower, figures out his own clothes, always remembers his deodorant and out of my three children that can maneuver through this process on their own, he is the only one who routinely hangs his towel up.

So, it was with some surprise that I walked in on him looking at himself in the mirror, touching a rough spot on his chest, analyzing it and thinking about it.  At 14, like almost all the others, he cares about what he looks like.  He wants his hair to be cool.  

He loves to dress up with a tie and jacket.  

This stuff matters.

I could see him feeling his skin like a blind person reading Braille.  He wanted to know the story behind the scar.  

He didn't remember receiving it. But, I did.

The scar looks like a hashtag that might appear on Instagram.  It's faded but rough to the touch.

I touched it too...and like some sort of portal, I traveled back in time.

There on the center of his chest, right next to his breastbone was the entrance to what once held a Broviac. A Broviac (for the lucky people who have never needed to know that word) is a way of giving chemo directly into your body.  It also happens to be a way to take out blood as well.  Pediatric oncologists often suggest it as the best option for young children with cancer because of that blood-taking option -- fewer sticks with a needle then.  

But from my viewpoint, I'd tell anyone to go for option two...the port-a-cath.

John and I affectionately called the Broviac, the "X-files thingy" -- truly a scientific medical term if there ever was one.  The Broviac was a tube that hung out of your chest.  It required a tape over it and a netting to be worn like a vest over the entire chest so that it would not get pulled out.  It was next to impossible to bathe in.  It was hell to clean, not to mention life-threatening if we didn't clean it right.  At the end of each week, we needed to push Heparin into the Broviac and clean the area around it.  

There Patrick would sit, the most stoic three year old on the planet, letting us clean raw skin and push medicine.

All that is left of that awful, horrible time is the hashtag scar.

Tonight, I told him the story of his bravery and his poise.  I admitted that while I was afraid of it, he was not. 

He looked at me in a shy, proud way...

and he asked about the next scar.

This one was a three inch horizontal line about three inches down from his left hand collarbone.

That was where the Port-a-cath was placed.

After the x-files thingy came out...which was a Defcon 10 on my fear list, they casually replaced it with this.  This beautiful invention goes under the skin.  It's about the size of a fifty cent piece, circular, and attaches to a vein.  It has a sponge-y center where the medicine goes in.  You numb the area and then push the meds/chemo when needed.  But since it is under the skin and nothing needs cleaning, once the meds are done, you're done.  Free to go and live your life.  Go swimming -- no problem.  Take a bath -- a breeze.  Play in a water slide -- fine by me!  It was a miraculous transformation.  Patrick was four when he got the port-a-cath placed and we were a new family.

They "accessed the port" (don't we sound like we're in Star Wars?) whenever he had a chemo treatment, which was about once a month.  

Patrick was so zen and unafraid about the accessing that other children who were fearful would watch Patrick and see how easy it could be. 

He was fearless at four.

Pretty stunning way to live.

That scar tells that story and Patrick heard it tonight.

He asked if he had any other scars and I pointed out the tiny one on his neck.  It was part of the Broviac nightmare and truly I blocked it out.  I just embellished the other Broviac story and told him he was ready for his shower now...

except then I had to take my index finger and smooth his open heart surgery scar that runs right down the middle of his chest a good eight inches long and thick.  Like I had a bubble of glue under a paper craft, I smoothed that skin, petted that scar and reminded him of that amazing badge of courage.

That scar is hard to miss.  He knows that story so I mostly skimmed over it, like a favorite fairy tale.  

I could give the Cliff Note version.

He asked to see my scars.

I have only two.

One from a hernia operation when I was two -- a whisker thin three inch scar way down low on my tummy -- and one on my finger -- a Girl Scout camping accident with a sharp tin can.  

My stories show no bravery.  No zen-like calm.  No resilience.  No grace.

Like ports of call on a map, Patrick heard his story.  

The hero stood down a foe.  He maintained his cool.  

He bounced back from mortal adversaries and held his own.  

Mostly, he did it with effortless grace, good humor and kindness, fearlessly.

What's a little hashtag scar or two when you've done all that?

You're made of powerful stuff my boy.

I'm glad you finally heard it all out loud.

After all that horror, fear and dizzying sadness all that's left are the scars...and the stories.

They're both pretty beautiful now.