Grace Under Pressure: America's Teachers

Wednesday, November 9th, 2016, the day after the most contentious presidential election in our recent memory,
was a school day.

School teachers and principals everywhere had to find a way, any way, to create unity in a time of division and open cruelty.

Donald Trump is now the President.

Donald Trump - who acted throughout the entire election season in a disrespectful, antagonistic, loud-mouthed, divisive way - won.

So, teachers who work on holding their students to standards of respect, tolerance and kindness for the first time had to look at their President and then look away.

Then they had to enter their classrooms and find a way to change the message.

As the universe would have it, I had to be in classrooms that day.

Normally, in the fall, I only go into classrooms on Mondays and Tuesdays, but because of a scheduling glitch I had to be there this Wednesday.

I like to think of it as divine intervention.

I was melancholy watching so much hatred and vitriol and as someone who loves children - hangs out with children all the time - I couldn't comprehend this new reality for them.
For us.

What would school be like?
What would my student teachers face?
How could a school create unity when the country was so divided?

How can you hold kids accountable when the adults in the room are acting anything but?

I walked onto an elementary school campus and was greeted with three third graders marching and saying: "We need a recount. Recount. Recount."
Who even knows that word in third grade?

I walked into a classroom before school had even started and found two veteran teachers in tears...and my student teacher just quietly watching.

"What do we tell the students?
How can we ask our students to behave with kindness and respect when we have this President?"

Good questions.

But time was ticking.
They didn't have a script.
No instruction manual...
students were coming.

Deep breaths.
Game faces on.

Good morning.

I watched it unfold in classroom after classroom.

Sat in awe as teachers comforted and listened.

Sometimes they gathered their students together and reaffirmed for them that this school in this place was safe and most importantly was theirs.

Sometimes they talked about democracy and founding fathers and the idea that every single one of us gets a vote.

I watched a student teacher guarantee her students safety, tolerance and respect in such a commanding way that I got teary eyed taking my notes with her words.
She helped her students see the beauty in our nation...
in our equality...
in our traditions and our government.

She offered every student herself.

If they didn't feel safe;
if they felt like they wanted to talk;
if they wanted to share a story...
she was there to listen.

I know a teacher who took the last part of the day to make friendship bracelets.
"Go ahead and work on a bracelet and think about who you will give it to in this classroom."

We are all friends here.

That guidance.
That steady hand.
Those loving arms.
Big hearts.
Listening ears...
that's what happened in school today.

All around the country, America's teachers steadied the course.
They went to work...
picking up the pieces and creating a beautiful mosaic.

Holding the expectations high.
Showing children what it means to be American.

These incredible people are stitching our children together,
binding them with love and kindness.

Living tolerance.
Breathing respect.
Inhaling peace.
Exhaling chaos.

If you want to know where to look during this time of disequilibrium and division...stop at a school.

Watch a teacher in action.
Listen to her big book about friendship.
Let the music of children's voices float over you.
Rise to the expectations of a child's best version of you.

We can do this.

We have their example.

Follow their rules:

Be safe.
Be productive.
Be kind.

America's teachers offer all of us a glimpse of extraordinary grace
during the least ordinary of times.

All we can do is follow their lead.

The Alchemy of Friendship

I've been thinking a lot about friendship lately.

About new worlds...only made by the intersection of two people's paths at just the right moment.

You have to be ready.

The other person has to be willing.

Some sort of magic happens and like a chemical experiment...

where there were once two separate chemicals, now there is unity...

friendship.

Joy.

Comfort.

Supreme comfort.

The ability to just be yourself without pretense and let the friend be the same.

Such a gift.

It can't be orchestrated.

It can't be forced.

We can wish for it.

Pray for it.

Dream about it...

but like a kite catching air,

it has to have just the right angle,

just the right amount of wind,

the exact moment when majestically it soars.

*****

When you have a child with a disability, you wonder in the dark of night if that child will be able to connect and have a friend...

not someone who is nice to them.

That's too easy.

No, you dream of something deeper.

A genuine enjoyment of each other.

Shared secrets.

Inside jokes.

Laughter and lightness woven with acceptance.

Like a unicorn, this kind of friendship seems mythical.

Is it possible?

The answer is yes.

Patrick and Christopher at 6th grade camp.

These two have been friends for a long time.

They don't need much.

They find ways to laugh and have fun almost immediately.

There is a realness and a genuine joy with each other that is palpable.

There's no awkward tension of trying too hard...or wanting it too much.

No, there's just a couple of goofballs.

Sunken into the comfy couch of friendship.

Patrick and Christopher were in the same class from first grade to sixth grade.

Then, in 6th grade, Christopher moved to another school.

They were still friends but for 7th and 8th grade they rarely had a chance to connect.

This year, in 9th grade, Patrick moved over to the same school as Christopher.

They picked up where they left off.

Sharing lunch time and laughs.

I haven't been around these two really at all...

I just hear the snippets of their friendship at the dinner table.

But a few weeks ago, I had to drive both of them to a week-end adventure two hours away.

Listening to them talk in the back seat was transformational for me.

I never had the opportunity to become friends with someone with a disability when I was a kid.

I really can't imagine it.

I try and picture how I would have been...

would I have slowed down and taken the time to really see this person?

I cringe and know that the answer sure feels like no.

How did Christopher know to do this?

Are you born with a compassionate heart...

or do you build it like a drip sand castle

drip by drip

just by being submerged in a world of difference and diversity?

Like friendship, I think it is a magical alchemy...

the heart is ready and the opportunity bubbles up creating the solution needed for friendship to form.

I know this much: inclusion is part of the answer.

*****

In the back of the car, two 15 year olds talk about driving and getting licenses.

Christopher reveals that he already has his drivers' permit, 

the first step to getting a California drivers' license.

Patrick gives him the appropriate oooh's and aaah's...truthfully impressed.

He doesn't press further...but Christopher does.

He asks Patrick if he has the app on his phone to take practice written tests for driving.

When Patrick reveals that he doesn't have the app, Christopher downloads the app onto Patrick's phone and then proceeds to go through a sample test with him.

This quote:

"Really, Patrick, you can totally do this. Most of the answers are just common sense. I'll help you."

made my inner Rocky run up the steps and dance with my inner Mother Teresa...

who does this??

The answer:

a friend.

A real friend presumes competence.

A real friend supports and encourages dreams.

A real friend shows the path.

A real friend believes in you.

A real friend takes a selfie and posts it to Instagram and watches the likes pile up...

Well, I think there can be some debate on the last bit...

but this pic is the essence of real friends.

Comfortable.

Companionable.

Caring.

These two have reignited their friendship...the world is better for it.

Just like the two individuals, this moment in time will never come again.

In the Japanese culture it is called Ichigo Ichie. 

One opportunity. One encounter.

We must cherish the chances we're given for friendship.

Seize them.

Reach out.

Laugh and linger.

Try harder.

Wait and wait and wait...and reach out some more.

Friendship is too important to let slip away.

We can't explain it...

or analyze it...

but we know it's no myth and all magic.

Today I'm grateful for big hearts and kind friends,

authentic and real in their relationship.

Thank you for showing me how it's done.

Thank you for sharing a bit of the magic with me.

You Are Awesome! Yes, You!

Yes, I'm talking to you.

So, one of my favorite things to do is to enjoy my local Turkey Trot.

You probably have something like this in your town...it's a race (5K or 10K or kid's race options) and streets are closed off, and port-a-potties are lined up and a big finish line banner is hoisted and it becomes very official: people are running, or walking, or pushing strollers.

I have participated in my town's Turkey Trot one time as a stroller-pusher with Caroline strapped in as a toddler.  She seemed fine with it.  Patrick walked alongside me and it was a good feeling of participating as a group working toward being healthy and a citizen of my town.

But I didn't like it nearly as much as my sideline participation in the Turkey Trot.

You see, the Turkey Trot goes right by house.

And every year I get up, purposely late, walk to the corner and scream to the runners: 

You Are AWESOME!!

I just yell and yell for about 45 minutes.  

Cheering on the runners at the end of the race.  They aren't the elite racers. They aren't the every-day-five-mile-no-matter-what runners.  These are the ones who are trailing behind and bringing up the back.

I pretty much repeat the same phrase over and over and I'm telling you, it's a winner.

The reactions are so honest and so beautiful and some are downright funny.

You have the "super-cool-and-I'm-a-real-runner" reaction...

they don't flinch, they give a head nod and keep running, they keep their pace and stay focused.

They are real runners after all and cannot be distracted by a weirdo yelling You're Awesome.

Let me also reveal for the record that I am most assuredly not a real runner.  

I attempted cross country in 8th grade and had some heart palpitations that sent my mom into her own heart palpitations and the distraction of running became a no no.

Couldn't even entertain the thought...besides...I didn't like it.

I'd much rather be a walker, a bike rider, a dog walking-dancing machine...anything but running.

So it helps that I truly do think these people running -- and that includes everyone -- are awesome for getting out there and doing it.

So back to the runners...

we have the "dang-I-can-barely-take-another-step" runner.  

These people are winded, tuckered out and shame faced when they come upon my cheering.

They mistakenly believe I'm cheering for someone else.

When I call them out and say, "Yes, you!! You are awesome!!" They look up and get that shy smile that is the effort of every cheering section on the planet.

And, for a millisecond they let it sink in...they are awesome.

Sometimes they brush it off but other times it perks them up and you can see the transformation.

You can see their mind calculating: "Wait. I'm not running, I'm breathing hard, I'm struggling, how can I be awesome...but that weirdo over there is yelling it directly to me...and well, I am out here running, and it is a foggy/rainy/cold day...maybe I am awesome."

I love it.

Yes, you are awesome!!

No proving it.

No worthiness needed.

You, right there, hon, you are awesome!!

When I'm doing my cheering, I get in the flow.

I don't care who sees me or how crazy it looks.

I love having the socially acceptable moment to yell "You are awesome!"

 to anyone and everyone on my path.

I highly recommend trying it sometime.

It makes your heart swell.

For a brief moment in time, you can see the awesomeness in all of humanity and it's pretty beautiful.

Of course, there's always the polite runners.

The ones who've been taught manners and thank you notes and reciprocity.

They are the ones that when I yell "You are awesome!" to them they yell right back to me, 

"You're awesome too. Thanks!"

I smile my shy smile because the mother in me wants to high five the mother that shadowed and loved and nurtured those runners...you see, that mother is most definitely running right alongside them.

Heloise would agree...manners matter...even in a Turkey Trot.

Maybe it's the time of year...steeped in gratitude, ginkgo trees and fire ash and oaks showing off, humanity has a halo of goodness built in for me.

But whatever it is, I love the Turkey Trot.

And if you didn't get to hear my cheer, here's one for you, 

You're awesome!!

To Thine Own Self Be True

The guy likes Shakespeare.

I've told you that before...over here.

He walks around with a beat up MacBeth book in his hand and yes, he has huge chunks of it memorized.

For his birthday, his wise and thoughtful aunt got him a similar version of Hamlet.

It's called Shakespeare Made Easy.

On the left hand side of the page is the original text.  

On the right hand side is the translation or an easier version.

So, he's been walking around for a few weeks with Hamlet in hand...in restaurants, carrying it to speech,  thrown into my bike basket.  I had a friend who saw him in the waiting room at speech reading Hamlet come up to me and kind of ask out loud if this was real.

Did he like Hamlet?

YES.

He does...really.

As soon as she thought it was real, she turned to Patrick and started to dish...

who was his favorite character?  

What did he think of Hamlet?

We had stumbled onto another lover of the British playwright.

I think that as a way to diffuse, explode and crack away the myth that people with Down Syndrome are stupid, we should just have them carry around some texts of Shakespeare.

It blows people's minds.

Like looking in a fun house mirror they just aren't sure of what they see.

We like to place people in tiny, little, immovable boxes.

It's more comfortable that way...

but sometimes they don't fit in.

Sometimes the stereotype cracks.

People have to stop and rethink certain givens that they've trusted their whole life.

And if they stop and rethink that one, who knows, maybe there are a whole bunch of other certainties that just aren't that certain any more.

Powerful stuff.

But only if you're given the chance...

only if the opportunity is seized.

So, we took a chance and signed Patrick up with other teen-age Shakespeare fans for a two week camp.

It was all day long with typical kids and real actors and directors who are staging some Shakespeare for a festival in our town.

He got up each day energized and excited to go...but wouldn't tell us too much.

He didn't get the script for Much Ado About Nothing until midweek of the second week.

What had they been up to all this time??

Patrick got the part of Benedick for Act I and Don Pedro for Act II.

That, right there, was something he'd never considered before...

he fiddled with that idea, resisted it for a few days, but gradually came to know that you could play two parts.

The play of Much Ado About Nothing was going to be presented on Friday, 

just two days after getting the script.

Patrick began memorizing, repeating and rehearsing in his room...

but he didn't have enough time.

Thursday night he was worried.

He was used to knowing his lines (and everybody else's) -- he couldn't believe he wouldn't be ready.

But the joy of being a part of the play and a part of this group motivated him to accept the truth and just use the script when needed.

So today at 3pm, Caroline and I showed up for a little Shakespeare.

I'm always on pins and needles at things like this...you just never know how it's going to go.

But this was a group who shared a passion.

A group where he spoke the language.

A group where he belonged.

He didn't have to earn his way in...he just had to love Shakespeare and that was good enough.

The little play was a whole lot more...it had improv, movement, singing some explanation of who Shakespeare was as a person...and yes the entirety of 

Much Ado About Nothing.

Patrick was a part of everything.

Before my very eyes I watched a metamorphosis of unsure junior high kid into full high schooler...

confident and true to himself.

I was teary thinking of my friends with young children with Down Syndrome who continue to be denied entrance into this world of acceptance and inclusion.

If only those naysayers could have seen the improv!

I'm so grateful to a group of actors who have created a sanctuary for kids who love Shakespeare and allowed each teen the freedom to come as you are and take away all that you can.

For costumes for the show the kids were supposed to wear black.

We missed the memo.

Patrick came home the night before the show and created the costume he thought would work.

It wasn't black...

but I got no last minute phone call...

no rescuing the situation...

no tweaking or freaking out.

It didn't matter.

No one seemed to care, 

and the production went off without a hitch...

so refreshing.

Shakespeare with a chill pill.

And after the play came this quote,  "You can go now.  I'll meet you at home."

Full teen.

Tonight, I am grateful to the Davis Shakespeare Ensemble.

I'm grateful to this group of actors, directors and musicians who share their passion and work to make Shakespeare come alive.

Grateful for their hard work and ability to engage with teens of all sorts.

I'm grateful to live in a town that is accepting and tolerant and inclusive.

I'm grateful to an 8th grade teacher who taught Shakespeare to an entire group of middle schoolers, never dumbing it down or diluting it, thrilling them with the action and the language...

and lighting a fire.

Most especially, I am grateful to the Bard of Avon...

the witty, the insightful, the tragic and comic Shakespeare...

who has touched the heart and soul of my son hundreds of years later.

There's no doubt that Shakespeare has shaped my son...who would have guessed?

Girlfriends

Susan Branch font :)


Yesterday I was smiling...all day long.
Magically, it had happened again, the calendars were free, pockets of time were secreted away and I could make my way to have dinner with my girlfriend.

I got the kids handed off and properly freshened myself up from the dust of the day and got in the car...
hooked up Pandora...and drove like the wind.
Singing out loud...LOUD...to MY music...rocking out inappropriately, dancing in the car I could feel the tension of daily annoyances, lists of things to do, and chores that hang over my head just melt away...
an hour in the car all to yourself can be a very good thing.

Along with significant time with your dear friend.

This chick and I have been hanging out, spending hours on the phone since high school.
My dad would just be mystified as I laid on my bed and gabbed the hours away with someone I had already been with for six hours at school.

What did we talk about??

Looking back, I have no idea.
(Note to teens today: keep copious notes and journal like crazy so you can remember these things.)
I'm guessing it was:
Boys.
Drama.
School.
Homework.
Life's injustices.
Dreams.
The good stuff of high school.

I feel sorry for teens today who don't dish on the phone.
They are missing out on some serious fun.

We went to the same college and lived together for part of it, but we weren't joined at the hip.
We joined different sororities.
We had different groups of friends.
Our own interests and dreams.
But like a fantastic score for a movie, she was always in the background, making my world better.

We got our jobs, figured out our paths and saw less and less of each other.
We lived about an hour away from each other and would meet for dinner.

We've been doing it for decades.

There is something so magical about a good friend.
Someone who just gets it.
Who's always on your side.
Who cheers for you.
Who cries with you.
Who does crazy things on your behalf.
Who will pray or pay or play whenever you ask...and many times when you don't even say it out loud...she just seems to know.

I'm blessed to have several good girlfriends.
People who have my back...and whose back I cover whenever I can.
It goes both ways.
It's comfort and care...bravery and honesty...saying the hard stuff out loud.
Owning it...and figuring it out...
or sometimes just recognizing there's no solution to be had and finding a way to make peace with it.

It's righteous anger and hilarious mortification and breath-taking beauty.
It's the wonder and sacredness of getting to be a girl and getting to go deeper
and have those kind of friends.

Leisurely eating dinner last night, sharing salads and delicious taste treats and desserts and secrets and hopes,
I found myself so sentimental...so full of gratefulness  for
this right here...that moment right there...
the good stuff.
So so blessed by friendship...long lasting...
all-the-walls-down kind of friends.

It's easy to gloss over it.
So normal to not make the time
or find an excuse to not be together...
but these people are what life is about.

They are only lent to us...we can't take it for granted.
We need to carve out the pockets on the calendar and say out loud:
you are important...too important to act so casually about.
We must make the time to be together.

Time for laughter and joy and friendship --
 those are the real sparkly gems shining in our cave of life.

So thank you, Tara, for finding the time and making it happen...
today, you're my grace-in-the-ordinary...
have been for decades.






more Susan Branch adorableness!

The Leap

When Patrick was born I was convinced that my world had just grown smaller.
Shrunken to such a small spot that I was certain I would never make another friend.

I cried about that loss.

Sorry for myself and my baby that wouldn't have any friends.

Only one word can claim that moment: irony.

Hey 1999 Beth, I'd like to fill you in on a little secret: you got it all backwards.

The truth is that the connections that have happened because of Patrick are literally in the hundreds.

The friendships we've made are constant and so utterly unlikely that only in the weirdest, most cosmically perfect way does any of it make sense.

It takes a leap of faith...and certainty in the net.

*****

Years ago I heard about an amazing organization called Camp PALS.

Jenni Newbury Ross started the camp at age 15 with a friend.
Her idea: stop having situations where typical people come to "serve" the poor and disadvantaged people with Down Syndrome.
Blow apart the myth that people with Down Syndrome need your pity.
Come as a person willing to make a new friend.
Find fun things to do together, as a group, as teams and in partners so that you get to really know the person and hopefully, in all the fun, the disability falls away and you have the joy of just knowing someone new.

That was eleven years ago.

Today, Camp PALS has six camps offered throughout the summer all across the United States.
Campers come from all over and counselors do too.
Counselors and campers are paired up one to one and share a dorm room on a university campus.
Together they spend a week, having a blast.
Karaoke  is usually a nightly event.  Singing and dancing happen spontaneously.
Fun is a given.

So, in January I signed Patrick up for Camp PALS Chicago and asked my friend who lives in
New Jersey if she would want to have her daughter go too.

Last week, we met in Chicago and traveled to adorable Elmhurst College, and received this welcome.

Their theme: "This is your place."

We had no idea how it would go...it was a leap of faith,
a best guess, a wish and a whole lot of crossed fingers. 

Turns out it was like so many things on this amazing journey of loving someone with Down Syndrome.
It was way better than we ever could have imagined.
Magical.

What are the five things that everyone at Camp PALS values?
They are welcoming, accepting, passionate, genuine and fun.

Pretty great trademark qualities.
Everybody I met had them in spades.

I wanted to hang out there, but I wasn't invited.
And knowing my mom-place, I said good-bye as cheerfully as possible and made my way back to the city of Chicago for a seven day wait.

It goes without saying that Patrick had a blast.

Chandler and Patrick, friends forever.

But more than having fun, Patrick found out what it felt like to be part of a group that is welcoming, accepting, passionate, genuine and fun...wait, he's those things too.
Maybe, Jenni took a look at her brother, Jason, (who has Down Syndrome) when she was looking for important qualities in the people she wanted to represent Camp PALS.
As a sibling, she knew the secret: if the outside world could really know Jason as a friend,
the world would be a better place.

Here's a Camp PALS classic:  one of the days of camp was Camp Day at a  AAA baseball game.  Tons of other camp groups were there besides Camp PALS.  Suddenly, there was a downpour.  Everyone had to take cover.  The other camps were counting off, trying to line up and be orderly.  The Camp PALS group just started dancing in a circle and singing...giving everyone in the group a chance to shine...encouraging them by naming them in the song.  Some kids from other camps came up to the dancing circle and asked what camp this was and when could they sign up. :)

Together we're better.

*****

I want to thank Camp PALS for the extraordinary opportunity of an inclusive camp
filled with amazing people.
Thank you for the long hours of hard work behind the scenes to make everything run so smoothly.
Thank you for the incredible photos, the inspiring videos, the texts during the week to let us know it was all going great.

Thank you for your gracious hospitality.

Thank you for making it really "their place" and for giving a whole bunch of people the chance to come together in friendship and fun....a chance for independence and inspiration...a chance to dream of what the future could be like.

Most importantly, thank you for following your gut and working to make our world more inclusive -- more welcoming, accepting, passionate, genuine and fun...qualities I'm gonna focus on for a while thanks to you.

Thank you for being our net.
You're amazing.

Keep Me In Your Heart For Awhile

"One of the most beautiful qualities of true friendship 

is to understand and to be understood."  

-- Lucius Anneaus Seneca

When you have a baby born with a disability, you enter a different world.  

I like to think of it as a parallel universe.

The outside world audibly gasps.  

There is the smog of pity that envelopes you and makes it difficult to breathe.

There are the many, many people who carefully, tenderly, kindly give you the "I'm so sorry," look or even utter those poisonous words out loud.

I want to scream, "Sorry for what?" 

Sorry for this perfect snuggly bundle?

This is the object of your sorrys???

I'd look down and it did not compute.

I was on the inside now.

Looking out at the world with this new view, it was as if I discovered the horizon line.

Everything made sense.

The things that the outside world cared about -- speed and intellect and perfection -- 

suddenly fell away like shingles off of an old roof.  

None of that mattered now.

What was essential, like Antoine de Saint-Exupery's famous quote, was invisible to the eye.

On the inside, I could only see with my heart.

Once your world is like this, you try to search for others.

Like some lost tribe that is scattered, they are hard to find.

In my town, not a single other child was born with Down Syndrome the year Patrick was born.

I could find no one locally.

So, in 1999, with the internet as an infant, I logged on and tried to find my tribe.

They were there.

I went to the National Association for Down Syndrome. 

There I found a discussion board and a way to meet other families with children with Down Syndrome. I could post a question and people would answer right away.

It was therapeutic and comforting and life-changing.  I no longer felt alone.

Within a few months, I found another board called ParentsPlace.  It doesn't exist any more -- some big company bought it out and changed the format -- but at the time it was my tribe.

I connected with families that had children close to Patrick's age.  Some lived in California but others lived across the United States, in Canada and even in Israel.  It was awesome!

As the years kept on, we would talk about meeting each other "in real life".  We called it an IRL.  

We dreamed of it, fantasized about it, idealized it and then reality forced our hand.

One of our own was sick, real sick.

Annette who had Ryan and lived in Canada had cancer.  Her diagnosis was grim.

Our friend Jan who lived in Indiana was willing to host anyone who could get to Indianapolis.  We would come out for the Buddy Walk in October and hope that Annette and family could make it too.

The year was 2007.

I had been communicating with these moms online since 2000, sending Christmas cards, cheering at the victories of their kids, praying through the difficulties but never had I met them in person.

I took Patrick out of school, convinced John to take time off of work to watch Caroline and deal with the bigger kids, and we went on an adventure to the middle of America.

I was nervous but so so excited.

I couldn't believe that I was going to meet Tara Marie and Emma Sage from New Jersey and Stephanie and Katie from New Jersey and Rhonda from Omaha and Nicole and Tarenne from Kentucky and Jan and Jeff and Nash from Noblesville, Indiana (and so many more!) 

IN PERSON.

It was a dream come true.

And a leap of faith.

I mean...who just jumps on a plane and plans to stay in a friend's house when you've never even talked to them on the phone??

Someone who has found their tribe.

For me, it made perfect sense...but for the outside world, not so much.

I will never forget getting out of my rental car with Patrick to meet Jan for the first time.

Her laugh and her, "You're so much taller in real life!" Meeting her sweet husband, Jeff, and their son Nash and then meeting so many others was so so beautiful.  I still get chills thinking about it.

And then there was the bittersweet reason, meeting Annette.

Nothing could hide the brutality that there was an urgency to our finally meeting.

There was no soft place to land.

I met Annette and her husband Tom and her son Ryan and their other son and no longer could use the distance as my shield.

Right here.  Right now.  This was happening.

For those of us on the inside, we know about the odds and life's little twists and turns.  We know that the hand can get crappy and you might not have any cards to play...but this was just plain cruel.

Life didn't make sense...but we somehow had to stop thinking about the future and live, really live, in the moment, in these few days we had together.

And live we did! 

Annette and I enjoying the day!

Annette was strong and happy and seizing the day.

How could we help it?

All of us had a comfort and a kismet that needed no words.

If our kids acted up or did something unusual, we all got it.  

It was a level of acceptance and friendship that was something I had never experienced before.

Partway through the walk Patrick refused to keep walking.  

Just quit.  

Any other place I would be mortified, cajoling, bribing,and otherwise working like crazy to get him to keep walking.  Here, another mom, offered me her stroller.  Patrick plopped in and Brig (one of the oldest kids with Down Syndrome in our group) pushed him.  Just like that, problem solved.

Thank you, Brig!

After the walk, we went back to Jan's.
We celebrated our children "with a little bit extra" -- the reason for our friendship -- and our hearts.
We talked into the night.  We played with the kids.
We gossiped and watched love bloom between Brig and Hannah (they are still going strong today!) and mostly felt the comfort of friendship, the cloak of acceptance, the fleece blanket of love.

It was a remarkable week-end.
One I will always cherish.
All thanks to Jan and the others who decided to make it real.

Just a few weeks later, we got word that Annette had passed away.

It felt so sudden and shocking.
We were breathless and bereft.
How??

Jan and Shannon offered to attend the funeral on our behalf.   They would speak for us.
Together they would show our love in person.
The outside world might not get it, but Tom would.

Six years later, my soul sister Tara Marie reminded me of that awful, beautiful time.
She toasted us tonight --
echoing the words of Warren Zevon's song, Keep Me In Your Heart For Awhile.

Annette, there is no doubt, you are in our hearts.
Always. And for more than awhile...forever.
We miss you.
We honor you.
We love you.

Most of all, I cherish the hours I got to spend with you...fleeting and fragile...
a reminder for how to live every day.
Minute by minute.
Smiling and full of life.

You Don't Remember

When Patrick was in kindergarten, he was just completing all treatment for leukemia.  He had been on a steady stream of drugs and drug therapies for over three years.  His body, just turned six, could barely remember what it felt like to feel strong and healthy since over half of his life he lived with the effects of cruel chemotherapy. 

So, going to kindergarten was a big deal.  

He had virtually no stamina.  He got tired quickly physically...now add in what we were asking his brain to do.  We had placed him in a typical kindergarten with typical peers and crossed our fingers.

We knew the academics would be rigorous...but we also thought he could do it.

He thought he could do it too.  

He went about his days, learning to make the letters of the alphabet, learning to add, learning to come in from recess and learning to follow directions --  from all directions.

It was a huge task.

Every day I would toil with the uncertainty of it.

Were we asking too much of him?

Could he do it?

Could the school do it?

What did his peers think?

What did the other parents think?

I had no idea.

Then came the trip to the pumpkin patch about eight weeks into school.

It was obvious that Patrick was worn out...tuckered out.  

He asked me to hold him.

I cringed.

No one else was holding their kindergartener.

I wanted to say no...play the tough guy...but I couldn't do it.

I could see it in his eyes.

He needed a lift.

So...holding him, inner cringing, here comes a mom with her camera 

(long before the days of everyone having a camera in their phone)

and asks to take a picture.

Although I felt awkward, I was touched by her out reach.

I didn't know her name.  She wasn't a friend.  

She was just a mom on a field trip and

she didn't seem to care that I was holding Patrick.  

She didn't seem to mind that he was tuckered out while all the rest were climbing hay bales and scurrying around.  

She thought this moment was picture-worthy.

Now here's the crazy part.

Apparently, she didn't just think it was worth a casual photo-op.

A few days later...yes, back in the days of developing pictures at a store...I receive in Patrick's backpack a clear plastic picture frame with a little red bow and this picture:

My pumpkin.

I was stunned.

Who was this stranger?

Who takes the time to develop a photo of some random classmate, put it in the frame, decorate the frame and somehow get it to the person?

I honestly couldn't get over the thoughtfulness...still can't.

When I see this picture, that still is on Patrick's dresser, every time I get choked up.

It was the tiniest touch of grace and goodness...a simple message:

I accept you.

You deserve to be photographed.

You are part of our class.

You matter.

This was my rainbow after a storm of not-knowing.

This was my sign.

It was all going to be okay.

I know this mom has no idea the depths her act of kindness has traveled.

She very likely doesn't remember doing it.

She definitely doesn't think it's still hanging around some kids's dresser.

Isn't it funny what sticks around and makes it to the trophy case of our life and lands on the bookshelf or dresser or wall?  

I always want to know the stories of these pictures because I know they're good...just like this one.

I actually forgot about that picture until a few days ago.

When the very same person came up to me, nine years later, saying:

"I'm so excited about this picture Beth.  I got his real smile.  I got him with his little buddy carving their pumpkin at just the right moment.  I'll send it in an email."

Sure enough...

...those smiles came through an email.

And I thought about her act of kindness all those years ago.  

About the door she opened of acceptance and inclusion.  I thought about her -- always behind the scenes -- taking pictures, remembering, capturing and holding close precious moments that drip.drip.drip away every single day.

She has no idea the lift she gave me many years ago.

She has no idea the example she set for me.

Her welcome couldn't have been any more warm or sincere.

I guess it's about time I said thanks.

Thank you for your kindness, your generosity and your grace.

I'm still holding it close many years later.

It's 3/21...do you know what that means?

It's World Down Syndrome Day!!!


It's time to celebrate!
Turn on the music, dance and show a little enthusiasm.
Three copies on the 21st chromosome and look what happens.
You got sparkle.
You got style.
You got living out loud.

If only the world would stop and notice.

This post is for people holding tiny babies, staring at a karyotype and wondering how on earth their child, their family, their world will ever be normal again.

Oh friend, your world will most definitely not be what the doom-sayers tell you.  
It most definitely will not be tragic.
And it surely won't be boring.
In fact, it will be a whole lot of fun...just look at that picture. :)

People with Down Syndrome LOVE to be part of the mix.
The are social animals.
That's why the idea of excluding and isolating these people makes my heart break.

They know how to party.  They know how to celebrate -- big time.
No one likes a birthday, a wedding, a graduation or a sporting event (with someone he loves playing) more than Patrick.
No one.

Learning to read, or tie your shoes or even walk might take longer --
but it happens.
Dreams come true.
Passions ignite.
In our house, it's Broadway musicals.
But for others I know, their child loves baseball or pop music or skiing.

The universal truths about life are right here for all to see.
Don't judge a book by its cover.
Give people a chance.
Open your heart to new ideas.

We all want the same things: love, friendship, connection.
We cry in the same language; laugh in the same language; bleed in the same language and
love in the same language.

We are more alike than different.
So...today, celebrate those people with an extra chromosome.
If you don't know anybody...sorry to say, you are missing out.
Maybe you want to check out the Special Olympics and offer to volunteer.  Or look into your local city's services.
There's a whole world of great people out there just dying to meet you.

If you do know somebody...give them a high five.
Better yet, turn on some music and dance.
They are worth knowing and most definitely worth celebrating.

Patrick, you make me laugh.
You've made my world wider.
You give me strength, hope and so much joy.
Here's to you -- and all of your friends with designer genes!

The Only Thing That Matters: Kindness

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -- Maya Angelou

There is a song that we used to sing when Patrick was a tiny baby.  It's called "Hands" by Jewel and it is a mesmerizing song.  It has a haunting melody and beautiful lyrics that get to the heart of what matters.  Her line that often repeats, like a prayer:

In the end, only kindness matters.

That's it. Six small words and that's all you need to distill all the wisdom of every religion down to a single sentence:

only kindness matters.  

When we were holding fragile, baby Patrick those words became our mantra.  It was all we asked for from each other, all we expected of our kids, all we hoped for the world to give our son who was labeled with "down syndrome", "mental retardation" and assorted other limiting words sprinkled on him only hours after birth. 

And like some sort of slide show, I remember the incredible acts of kindness bestowed in those beginning days.  I remember returning from the hospital to a house still in the ruins of a remodel to a front door that was decorated and welcoming us home.  That loving act of kindness still brings tears for it was the first time that I pondered the idea that Patrick might be welcomed by others...and he was!  I remember a dinner being brought over to my house by a mom I didn't know since Jack was a brand new kindergartener and we were new to our town. Mostly, I remember the bottle of wine she gave us...as if we were celebrating.  And it dawned on me that we could be celebrating, should be celebrating -- instead of being afraid of the unknown.

I remember vividly our gentle, kind parish priest, Father Dan, holding tiny Patrick right outside of church and giving him a blessing and then blessing all of us.  I could feel his grace and his welcoming kindness.

I remember a friend coming into our hospital's Pediatric Cardio Intensive Care Unit with a giant over-sized stuffed puppy that was also named Patrick.  Seeing that giant puppy given from my hard-working friend in her business suit made me believe that someday our Patrick might be climbing all over that silly guy and having fun...outside of hospital walls and hard times.

In the end, only kindness matters.

And no, it's not just in the intense dark days that this matters.  Kindness matters every single day. It is the extra deep breath and calm reaction to whatever mishap in the kitchen has occurred -- the proverbial spilled milk.  It is the extra thirty seconds of listening to someone speak, really listening.  It is the way we say goodnight and the way we say good morning to those who share our space.  It is the smile of recognition and welcome for someone who's new.  It is the caring text, checking in.  It is the phone call, the dinner served, the extra kid who tags along because he needs a ride too.  It's our reaction when our spouse says he's got to go out of town, yet again.

You see, I'm not writing this to tell you I'm doing all this.  I'm writing to remind myself.  To remember what it feels like to receive such kindness and by remembering trying to live it.  It's a process and a slow one...but that song still rings true today.  Perhaps the words are even more important today.

Piggybacking onto Jewel's song is this poem...one of my all time favorites.

It, too, serves as a daily reminder for me.

Kindness 

by Naomi Shihab Nye

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 every where
like a shadow or a friend.

So, it is with kindness that I send this out to you...hoping the ripples will make their way into some space within you that needs a bit of kindness...hoping that those ripples will continue to find others who need a dash of kindness like they need a spot of tea.   That this kindness can be the way we treat each other, including those that we love most and those we don't even know. The "size of the cloth" is pretty big, and it is the only thing that makes sense.