Thursday, June 21, 2018

The Junk Yard vs. Poetry Beach

There's been a lot of sorrow.
Deep sadness.

I try not to think about it...but every tiny act of mothering is a reminder.

Tonight I clipped my child's fingernails.

I wondered who clips the nails of the children in cages.
Does anyone notice when their nails are too long...or too dirty.

Yesterday, my 12 year old daughter asked me to braid her hair.
It's a rare treat these days so I seized on the moment to brush and tend and love her via her hair.

I wove her hair with a heart that is tattered...I saw the tiny stripes the sun has tinted in her hair already...I knew the area on her head where the braid always gets bumpy...I smoothed and tightened and thought of all the young girls with no one to fix their hair.

Children are being taken and separated from their families.

The government is working to bring the most pain to bear on immigrants.
It's working to harm the youngest and most vulnerable.

I can hardly believe this nightmare is true.

A few days ago, I was moving my daughter up to Portland.
Despondent over these babies and mothers I went for a walk along the Willamette River.
I tried to lose myself in that new place...tried to notice something new with each step...
a wildflower here...a tiny bird there.

It felt good to walk along a river and notice the current that never falters...always moving forward.

Lost in my thoughts I abruptly hit the end of the path...
a dead end with a junk yard attached.

How cosmically perfect.
Gross - Dead - Polluted - Junk

Might as well be describing our government...or my mood.

It felt maddening and sickeningly spot on.

What could I do but turn around?
I literally made an about face to begin walking back and discovered a path called Poetry at the Beach.

I marveled at this mystery.
What was going on?

How could there be poetry at the beach?
Literally, two of my favorite things embedded in some sort of spiritual mash up...what??

I should head back...I had chores to begin...and commitments to attend to...but I knew that wouldn't be happening.

I had to walk the path...
I discovered stones that had the words of children...the poems that children created carved into them...voices of Native American children who pondered the Willamette River and what it 
meant to them - felt to them - inspired in them.

Here are their hearts etched into stone:

There's always one Jordan.

Every carved stone captured me...I wondered where the student wrote the poem...who did the carving...where did the rock come from...who funded it all...who did the work of placing the stones in their spot...all of it seemed like one big surprise party made only for me.

Every stone echoed in my heart.

I came upon stones that had the Native word for our ordinary words:

It felt like I was being handed a secret code...or a blanket from the past...

Sit here.
Wrap yourself up in our words and our ways.
Know that the Willamette was here before you and will remain long after you.
Find comfort in the unwavering strength of stone...the unstoppable movement of the river...
the beauty that waits for you to notice.

That beauty is yours every day.
Poetry at the Beach

Here she is:

Meet the Willamette.

I walked along that stunning slice of sand...soaking up the driftwood so beautifully, carelessly tossed right where it was meant to be...looking at the gray stones and seeing 
gunmetal, silver, ash, slate, smoky, dove's egg, charcoal...the twists and turns of gray...
and the gift of being able to see every last hue between black and white.

I started my walk despondent over the now...alone...I ended my walk soaked in the people who came before me...the river that spans both and will arch into the future as well.

We have junkyards and poetry.
Stones waiting to be carved and poems still left to write.
Every single day, it's up to us to find the poems.

Up to us to notice...and leave our mark.

You get to choose:
junkyard or poetry.

Today, I thank the eagle, the frog, the Canadian geese, the otter and the driftwood.

I thank whoever found the swimming otter driftwood and left it for me to enjoy too.

I thank the stone carvers and the poets...the dreamers and the visionaries...those who thought to combine Native history and language with the beauty of the beach and children's voices.

Mostly, I thank the Willamette River who has seen her fair share of junkyard and poetry...
and still she flows.

Monday, June 4, 2018

My Love Letter To Davis, California

It was 3:50 am, the streets empty and the school dark when I walked Patrick up.

He was carrying his black backpack - full of a lunch, sunscreen, baseball hat, change of clothes, headphones and freedom.

The guy was headed to Disneyland with his senior class.
Graduating in a few days, his senior classmates got the chance to spend two days down in southern California...time at Disneyland plus time at the beach...throw in a dinner at Spaghetti Factory and it was perfection. 

Teacher Scott Bell was there at dawn...along with the school superwoman, Adela, and the director of internships, Susan, and the paraeducator who said YES when asked to support a student who needed it - my son, Patrick - and was willing to attend a field trip that lasted more than 48 hours.

SHOUT OUT to Antwanette!!

There were parents I knew from other parts of my life - also willing to chaperone the adventure.

I walked back to my car in the dark, got into my isolated seat and burst into tears.

How is this possible??

In this moment of independence for Patrick there are so many supporters...
so many willing to find a way...
so many who think nothing of it...
of course, they say.
It's going to be great.

My town, Davis, California, goes like that.

It's a gem of a spot with a creek, double decker buses, a big university and lots of bikes...but like any home...
it isn't the place, it's the people that make it comfy.

I flash back to preschool.
A little co-op preschool that had a tractor in the playground for kids to climb.
We had only been in Davis for a year before Patrick was born and my older daughter, Mary Kate was in the four year old program at Davis Community Church Nursery School - the famous DCCNS.

A co-op means parent participation and when Patrick was born, well, he needed open heart surgery right away at nine weeks old.

I couldn't work at the preschool and felt deep shame about that - so crazy how we hold ourselves to impossible ideals in the middle of a crisis - I couldn't shirk my responsibility!
I wondered if I would have to give up the preschool and find another.

As I was carrying Patrick in his carseat sending Mary Kate off to school, the director of the school, Teacher Betsy,  came up to me.
Inwardly I cringed...could she know that I couldn't work...couldn't hold up my end of the bargain?

She smiled and said words that changed my life:
"When you are considering preschools for Patrick, I hope you will consider us."

Almost 19 years later and still that act of full throttle welcome brings me to tears.

In my world, Patrick was living with almost no choices.
He would be stuck attending whatever school would take him.
He would be unable to participate in regular activities.
He would be limited.
He had Down Syndrome.

Her words took a sledge hammer to the limitations I envisioned.
Her words held an idea that I didn't think existed for Patrick:

I would be considering different options for preschool??
He would have choices??

It was a game changer.

It was also quintessentially Davis.

Davis offers plenty of all arenas.
Food - Fun - Schools - Life
Why couldn't Patrick have choices?

Patrick DID attend DCCNS as well as the special ed preschool that the school district offered.
He had a blended program and that's pretty much been his entire life.

Our local Catholic school said YES.
Our local Boy Scout troop.
Our local swim team.
Our rec department.
Our art center.
Our city.

Patrick loved singing and dancing and holding the microphone as a little guy.
In third grade we tried a theater class at the art center with the amazing Miss Mindy.
She accepted Patrick, guided the other students and offered opportunities to sing and dance and be part of some of his favorites, including High School Musical and Camp Rock.

Just as he was aging out of Miss Mindy's classes I worried that he was older and possibly more difficult to place...
in that moment came the incredible Dottie.
She wrote her own plays with twists on the classics AND she had an adult son with Down Syndrome.
She understood equity and opportunity and welcomed Patrick into theater during the awkward time of junior high.

As Patrick was moving into high school he was unable to be fully included in high school theater...his one time when he was shut out...and so Acme Theater, a local theater troupe for high schoolers, said YES.

He was included in Camp Shakespeare.
He got a job at our local city pool in the snack bar.

He was fully included in his high school - Da Vinci High School - and able to earn a California high school diploma.
At Da Vinci, Patrick had an internship with Acme Theater.
He made friends, went to dances - where the city provided support (!), created clubs...made his way.

In four days, he graduates from high school.

In this moment of one door closing, another door opens:
Patrick is headed to college.

Patrick has been blessed with a gift beyond measure...a community that believes in him.
He's been taken seriously and given opportunities.
He has been supported without reservation.
He's been enveloped in kindness.

My heart is so full of gratitude and light that I feel like Ironman...with a blinking bright target in the center of my sternum.

How do you thank a town?
How can I possibly express what this town with its big open heart, its sense of let's-figure-it-out, with every person who was willing allowed to transpire for Patrick as he grew up here.

Davis, thank you.
Aquamonsters - Pete and Koren
Miss Mindy
Mr. Bell
Mrs. Kirby
Sarah and Antwanette and Tammy
The entire faculty at Da Vinci High
Mike at Holmes
Father Dan and Mary Kay Bolz
All of the faculty at St. James School, especially Bev.
Teacher Betsy
Teacher Mary
Teacher Ellen
Teacher Lonna
Teacher Patty
And the families at DCCNS and St. James
Acme Theater
Emily Henderson
Hollay Shayegi
Sarah Barnes
Steve Rubin
Ashley Shuell
Robin from First Steps/Early Intervention
Karen Edmiston and Center for Speech Pathology


It is because of your open hearted compassion that Patrick is the person he is.
It's been an incredible ride.

He's off to great places!
All thanks to you.

Friday, April 13, 2018

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 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.

Monday, February 19, 2018

Just Shine

I am sitting in the MIX...the George Mason University study space...after just dropping Patrick off to his George Mason LIFE program interview. 

On that summer day in July 1999 when Patrick was born,
George Mason LIFE was also in its infancy...almost no other post secondary programs existed in the United States for students like Patrick.

Nobody on the west coast knew of George Mason...or of this possibility...or of what could be.

We heard the word “Sorry” a lot.

“I’m so sorry” they would say as they looked at my sleepy brand new baby.
The incongruence of that never made sense.

Pro-Tip #1: if you see a tiny baby say only one thing: CONGRATULATIONS!

Yes, even if the baby has a heart defect and needs open heart surgery right away.
Yes, even if the baby has Down Syndrome.

Yes, even if the future is unknown.

Say CONGRATULATIONS...because what it has taken for this little sprite to land in our midst is worthy of congratulations.

It’s a miracle.

And the miracle is no less miraculous if the sprite lasts one day among us or lives for 75 years.

Miracles are miracles and they should be noted.


Patrick left his icy cold water (one of his favorite things on the planet) in my bag...
 I text him...asking if he would like me to drop it off.

No response.

The guy is busy with a college interview.
What am I thinking?
I take a swig, just to be close to him.


This moment is so bittersweet...six weeks after Patrick was born I went to my OB/GYN follow up appointment. I took my little baby in a bucket with sweet tiny baby boy who would need open heart surgery in just three more weeks.

The OB/GYN did not know how to speak of Down Syndrome or heart defects or any other “abnormalities”...the privilege of working in a first world hospital made difficult conversations rare, I guess...or maybe there is no training for this...but what she told me in those aching awkward minutes has stayed with me.

She was trying, really she was.
I know this.
And still, it was a stabbing wound, no matter how unintentional.

She said, “Well, I know we all fear our kids growing up and going away and well, that won’t be something you have to fear with your baby. He will always be with you...and I think that’s great.”

Future doctors of the world, take note: this is not something you tell a sleep deprived, anxious, mom of a newborn facing open heart surgery and two other little ones at home.


You don’t have to try so hard...
Refer back to Pro-Tip #1...say Congratulations...and win the Oscar, mean it.
Even mumbling something about how cute the baby is would work.

As soon as my OB/GYN said this I wondered if that was true...and that’s the beauty of humanity.

We don’t have to believe the stuff they tell us.
We can notice the gates as they are being put up...we can plan to knock them down...or find the entrance.

I have wondered about that prediction for 18 years...but around year 6 I knew it was wrong.

Patrick has no interest in hanging out with me.
After three years of leukemia treatment as a toddler, it was time for Patrick to start kindergarten.

He hadn’t felt good for three of his six years.
Half his life.
I could have home-schooled him...or figured out a modified kinder program for him...but he was determined to go to school with his big brother and sister.

I still consider that one of my greatest acts of kindness as a mom.
I wanted to play with my guy.
I wanted the fun...the laughter...the joy of a healthy Patrick.

I wanted it for me...just me.

He wanted it for the world.

And so I had to follow his lead and find a way to make that happen.
He never looked back.

He never cried to come home...or told me he missed me.
But, trust me, I squeezed him tight every afternoon.

Kindergarten was the preamble to what is happening now...and I feel the same way.

He is following that big brother and sister again...and he knows he’s ready.

Me, not so much...but it can’t be about me, can it.

Getting ready this morning for his George Mason interview, lying in a hotel bed across from me,
he smiled his sleepy that only a mother knows.

I got up and walked over to his bed and I gave him a good morning hug and I looked at his sleepy eyes up close.

“Patrick, I haven’t told you how proud I am of you. You did such a great job at your Clemson interview and I am so proud of you.”

“Why?” He asks...and I weigh the two opposing ideas: he really doesn’t know or he just wants to hear great things about himself...the reason doesn’t matter and I smile...

“Because your job as a person is to shine your are the only one with your light...and you shined it so bright Patrick that not only could I see it but the Clemson people could too.”

He smiled.
He knew I was right.

Some people ask what the whole point of living is and I think it is just to shine.

There is so much darkness.
So much woundedness.
Too much suffering.

The only way forward is to shine...shine so bright that they need sunglasses to stare.

So, friends, let us work to find more ways for our kids to shine...more ways for ourselves to shine...Patrick is going to find his way, really, it’s pretty obvious now...we all must find our way.

Moments before the Clemson Interview...anxiety free...ready to shine.

Step 1: Just Shine.

On this cloudy day in Fairfax, Virginia, I need my sunglasses.

Friday, January 12, 2018

Artisans of the Common Good

It's been a long hard year.

We've had leadership that is undignified, unprofessional, unkind at the highest level.

That places a pall over our country, even our world...
...and yet, every single day, in my world, I see kindness and compassion,
curiosity and integrity.

I drop my children off at school and feel grateful for the teachers who work so hard, every single day, to be role models and to find a way to educate every student in their class.

They come to school with difficulties of their own and yet, they place them to the side and advocate for with children...honor and cherish children...and the best of them set a child on a course of learning and growing that is life-changing.

I drop them off with gratitude in my heart...but I want to yell 

These teachers and principals, lunch people and custodians are
the very threads that make our country beautiful...
they are, as Pope Francis so gracefully said,
"artisans of the common good"

Yesterday, I went to an oak grove and I found a worker raking the path.

I listened as the rake clawed at the ground over and over, cleaning the way for people like me who enjoy wandering among tall oaks in the mist.

I smiled but I wanted to shout THANK YOU!

He is an artisan of the common good.

I mailed off a package that was important to me...
it holds a dream, an opportunity, a wish.

I handed it to Laura, one of the local people in my town who mails things off...
I wanted to hug her and thank her...instead I just gave her my few dollars - safe in the knowledge that my package would make it across the country because of her expertise.

Another artisan.

I walked my dog and noticed the street sweeper had swept the gutters of my street.
Another artisan...invisible but holding us together.

We have firefighters, policemen, 
nurses and doctors,
ambulance drivers,
city workers,
the highway patrol,
the people who build our bridges and smooth our roads,
the tree trimmers,
the park maintenance workers...who bring WD40 and find a way to help the swings lose the grinding metal on metal sound...honestly, these park guys do that (!)
we have people who plant flowers
and paint stripes on the roads,
the people who keep our electricity running
our water clean and flowing...
our garbage picked up,
our sewer system functioning,
our street lights on
our signs clearly marking the way,
our railroads in operation,
our city buses with wheelchair access...
we have artists who create public art...
farmers who bring their food to the local farmers market...
we have musicians playing on the sidewalk...and even bicycle taxis.
Our local co-op grocery store sponsors a candlelight walk at Christmas time...

Together, our community is a magical place...
the keyword: TOGETHER.

WE are who we have been waiting for.

WE are the artisans of the common good.
Every time you stop completely at the stop sign and wait your turn in traffic and truly only take 20 minutes or less in that 20 minute parking spot, YOU are contributing to the common good.

When you sweep your sidewalk, pick up the litter, share whatever extra you have with the people who have nothing, YOU are an artisan.

Today, I'm so very grateful for the people who go about their day just doing their good work...faithfully, professionally, honestly.

I'm so struck at the grace of that.

The interdependence we all have with each other.

Thank you, each one of you, for making our world a better place.

Deep breaths

Together, friends, we are the artisans of the common good.
We'll get our leadership to reflect our common good...soon, very soon.

Until then, craft your corner of the world with beauty and compassion.

Together, with other artisans.