Dancing Between The Good Things

Today I had to run to the grocery store -- no food for dinner -- fill up my gas tank, take my bike in for its flat tire and quite a few other errands all at the end of the day.

The grocery store was my final stop.

My in-and-out-one.

My super quick - I can do this in 15 minutes one.

Nice try.

As I was walking and concentrating on that list in my mind, Jeff came up.

Jeff is one of those people that lives in my town but I only see in one place ever:

the grocery store.

I see him at all times of the day.

He hangs out at the grocery store.

He's older...usually has his black backpack in the cart along with one or two items.

The grocery store is his community.

Jeff is someone that some people avoid.

He's eccentric.

He's loud.

He's out there and just by talking to him he puts you out there too.

Before Patrick, I would have considered my grocery list more important than Jeff.

I would have felt uncomfortable...and hurried...and bugged by this guy.

But after Patrick, my heart cracked open in a way where now every little person on the planet counts.

There are no randoms.

I don't discount the interruptions.

The sideways detours.

The super bizarre roundabouts that life takes me on.

Because of Patrick, I've been talking to Jeff for years.

Saying hi at first.

Listening to his math stories -- because he is a math genius.

The rumor is that he was a high level math instructor somewhere.

Over the years, I've given him my address so he could write me a letter.

"You never have to write back. It's ok. I just like to have people to write to."

He's found out about my job with teachers and asks about them...or my family.

Seeing Jeff at the store is a spot of sunlight.

He makes me pause and helps me know what's important.

Often, he will say something that will soak into my heart like it was a parched slab of earth.

Tonight was one of the best.

I asked him how he was doing.

"Oh," he says, "I'm dancing between the good things."

I smiled.

He went on...letting me know that it is our choices that make our life.

Our attitude that determines if our life is good or bad.

That we can change the day even in the middle.

Just what my parched heart needed to rain down.

Dancing between the good things.

What if we did dance in the hard spots?

Instead of laying down...or curling up in a ball...or sitting alone through the crap...

what if we danced?

What if we believed in that deep down way of Jeff that the good things were mere dots that needed connecting? 

The blank space left for dancing?

*****

After his explanation about how having a positive attitude can make everything better.

He paused.

Suddenly, shy and embarrassed.

Like he had an invisible sand timer that suddenly ran out.

He looked up and said, "I should let you get shopping." 

"I'm practicing my social graces."

And with that, he abruptly turned his cart around and went off down the aisle.

Silly Jeff.

He doesn't need to practice any social graces.

He's dancing between the good things.

His grace is pretty obvious.

The rest of us might need some practice...but not Jeff.

Here's to dancing...

and living your life out loud.

Here's to beauty found in the grocery store...and grace freely given...

even late on a school night.

Multiplication

I feel the heat of a social media frenzy.

It makes me cringe.

I feel embarrassed.

I completely sympathize with Cam Newton.

Why?

An email I wrote in a passionate moment to a school that denied my son entrance has been revealed.

My 20 year old daughter, sitting in her apartment in college was so disgusted 

she wanted to let it loose.

Like some message in a bottle, she shouted into Facebook, and shared her conflict and disappointment at the relative hypocrisy of a school that holds the motto, "Men For Others".

It seems that one of our sons is a Man.

Our other son, with Down Syndrome, is the Other.

I actually wasn't surprised by their decision.

I knew it would be a tough sell.

Before Patrick, my son with Down Syndrome, I fully admit that I would be the one not letting people in...not believing in the capability, the equality, the urgency of learning together.

I don't resent Jesuit.

I don't want to hate on them.

Or shame them.

Or even torment them.

Trust me, the heat they must be feeling from this social media blitz is more than they are used to...

and must feel uncomfortable.

Mary Kate's post on Facebook was not something I encouraged.

In fact, I actively discouraged it.

I wanted the whole process to stay private.

Like I was negotiating with a terrorist, I was afraid the pin might drop.

Jesuit had all the aces.

I was dependent upon them for even the slightest, tiniest welcome.

I knew it was a game I would most likely lose.

And it didn't feel good.

But Mary Kate was adamant.

She wanted to do this...

and when it happened, I just let it be.

Here is her post:

"This past week my brother was denied admission to Jesuit High School Sacramento. The high school my older brother attended. The high school my family has endorsed and supported over many years. Patrick was not denied because he was unqualified, but rather because he has Down Syndrome.

It's difficult to believe in a religion that is based on "treating everyone the way we would want to be treated"  and that "we are all made in the likeness and image of God"  when situations like this occur. But I refuse to be sad or mad about this. The only people who should feel sad are the administrators, teachers and students of Jesuit High School who will never get the opportunity and privilege of knowing Patrick, not only as a student but as a friend. 

My mother said it best in this beautifully crafted statement: "You can know that by not allowing Patrick into your school, you are continuing to marginalize a segment of the population that is already the most marginalized group in our country. You are perpetuating the myth that disability is such a hurdle that you cannot get over it. You are even contributing to the abortion rate -- because any student that knows Patrick knows that his is a life worth living and would not be able to condone abortion.  

I will continue to pray for all of the people, like you, in leadership positions to open their hearts and minds to students like Patrick. The educational research is irrefutable. The academic scores go up for all students -- the social emotional health of all students improves. It is worth every effort. And yet, we continue to be stymied.

Why?

Fear? the perception of the student being a burden? The pervasive prejudice that is allowed to continue in our country toward people with intellectual disabilities? 

In this Year of Mercy , all we can do is redouble our efforts and continue to work tirelessly on behalf of the least of our brothers. You can be assured that I will be doing just that." 

Siblings are virtually never heard.

When do they get to say their peace?

When do they get to acknowledge that they live in a world that sees disability as brokenness 

when their reality is the opposite experience.

Mary Kate sees Patrick as an equal...deserving of opportunities.

She understands that he will need support, 

but she doesn't think the two things are mutually exclusive.

Mary Kate posted on Facebook on Friday night.

24 hours later, her post has been shared close to 300 times.

Shared by strangers, friends and family.

Shared by groups that work for inclusion and families that dream of inclusion.

Shared over and over and over again.

********

When you have a child with a disability, you feel very alone.

Isolated.

Frightened.

Insecure.

Vulnerable.

You feel the weight of making every decision carefully and intentionally.

You cringe when you ask for an opportunity.

You hold your breath...and expect the no.

Sometimes you are surprised by a quick and kind yes.

But many times you hear the words, "we just can't do it".

You sigh and wonder what it's like to have all that power.

You wish they could see your child as just a child.

You connect with others...but feel alone.

Watching this post get shared over and over again felt like the craziest,

 most universe-binding hug I've ever had.

Strangers stood side by side with family members...all sharing the story...

and leaving the question hanging...

Why say no?

********

It's been the kids who have been amazing.

Watching both of my older kids advocate out loud has been breath-taking...

but their friends...

their articulate disappointment...

their stunning shock...

their "I stand with you" solidarity,

 that is the inspiration as well.

They get it.

They always do.

Us adults need to just get out of the way sometimes.

I don't know how the story is going to end.

I don't need to.

For this minute, on this day, I feel such tremendous community and connection and care that I can barely soak it all in.

Our world is changing.

Tiny baby step by tiny baby step questions are getting asked...

by the kids!

Left in their hands I feel so much hope.

When Patrick's classmates are old enough to be principals, they won't say no.

That idea alone: a parent asking and hoping...and a classmate of Patrick's remembering his or her own experience of what inclusion is really like...and saying yes....

that right there is the good stuff.

Mary Kate, you did it differently than me...but you sure did a beautiful thing.

Wish out loud.

I know that grace.

I know that beauty.

Let's keep doing it.

Together.

Washing Your Hands

Lately, the world seems to put me in very weird situations.

It seems to be asking me

no, demanding of me,

that I stop and take notice.

NOW.

Tonight I ended up in a care home for people who are needing a whole lot of medical care.

The person whose room I visited was a complete stranger.

I was visiting with the person who was going to visit her...

and somehow, I got included in on the visit.

This person has been struggling with a severe health crisis since June.

She is completely immobile.

She cannot move her fingers.

Cannot move her legs or arms hardly at all.

She is dependent on someone to feed her, offer her a drink, move her...

virtually everything.

Yet, here she was...bright eyes, kind smile, warm and welcome.

The good news is that she will very likely completely recover.

The bad news is that it will take a while.

A long while.

As we made small talk about favorite TV shows...or good singers...my mind wanted to curl up into the corner of that room and just sob at the arduous journey this single mother of three is on.

I wanted to scream and yell and demand the process to hurry...

Yet, there she was...grace in the flesh.

On the path, she'd made peace with it somehow, and showed us the way.

After the visit, I went to the restroom and I washed my hands.

I lingered in the warm water...moved my fingers, fiddled with my ring...

said a holy hello to these instruments of joy that I never properly thank 

as they toil day in and day out.

Hands...thank you.

Feet...thank you.

Eyes and ears and tongue and mouth and lungs...

THANK YOU.

Thank you for this gift.

Right now.

Offered freely every day.

Thank you for friends who visit others in hospitals and can't help 

but hug you right into the visit yourself.

Thank you for the gift of grace...

rescuing me...

encouraging me...

inspiring me.

If your body allows it, go hug someone.

Go sing.

Go dance.

Go laugh and cook and cherish and read and love.

Make a phone call.

Take a deep breath and wash your hands.

Crazy Love

I would often see him when I was dropping Caroline off at school.

He would zip in and drop his girls off at school and head off.

He was a great big bear of a man.

His love was palpable.

Crazy love.

I knew it well.

My husband has that same kind of crazy love.

We rarely exchanged words...

maybe an occasional smile.

But because of that crazy love,

I knew I liked him.

I could feel the blanket of love he wrapped around his two girls, myself.

I didn't even know his name.

Oh, but I knew him.

Knew he'd be the kind of guy I could hang out with at a barbeque.

Someone I could dish with...

...because that crazy love was something we had in common.

Now, my chance is gone.

Yesterday, I learned his name.

Mark left us...

bound for a place filled with even crazier love.

Deeper, more mysterious.

Jaw-dropping and wonderful.

It's hard to imagine...

and all of us left behind just want another few days,

well, maybe weeks or years or 

damn it, decades.

*****

I read a book a while ago called The Fault in Our Stars by John Green.

It's about two teenagers who have cancer.

I don't want to give anything away because I want you to read it...

it's really amazing...

but at the end someone has to speak about the terrible torture of a shortened life and uses this quote:

"Some infinities are bigger than other infinities.

There are days, many of them, when I resent the size of my unbounded set. 

I want more numbers than I'm likely to get, and God, I want more numbers for _____. 

But, my love, I cannot tell you how thankful I am for our little infinity. 

I wouldn't trade it for the world.

You gave me a forever within the numbered days, and I'm grateful."

"a forever within the numbered days"

"our little infinity"

That's all any of us get.

Yes, some infinities are bigger than other infinities

and none of it makes any sense.

Why should someone with so much crazy love

go so soon?

Why should someone else who is a rock solid criminal live into old age in prison?

In moments like this I wonder why this love, this life, 

this chance to breathe deep and hold close those we love the most,

why must that end?

But again, I know, that I don't get to know...

not just yet.

On this side, I get to sink into the questions;

try to fight the quicksand of believing we can figure it out.

What I know...all I know...

is that energy doesn't disappear.

I know for sure that Mark's crazy love is cosmic bubble wrap surrounding his girls 

and his wife, Debi, forever.

I know that we are all better for witnessing that kind of love.

I know that his girls have been loved oh so well by their dad.

Isn't that all that matters?

How well did you love?

How deep did you love?

Who did you love?

Mark wasn't stingy.

His crazy love surrounds us all.

*****

"We are travelers on a cosmic journey,

stardust,

swirling and dancing in the eddies and whirlpools of infinity.

Life is eternal.

We have stopped for a moment to encounter each other,

to meet,

to love,

to share.

This is a precious moment.

It is a little parenthesis in eternity."

-- Paul Coelho, The Alchemist

My Guest House

The Guest House

This being human is a guest house.

Every morning a new arrival. 

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice.

meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent

as a guide from beyond.

-- Rumi

Tonight I read this poem at just the right time...so I'm thinking you might need it too.

Lately, things have been hard.

Not necessarily directly for me or to me but swirling around for people I love,

it's been hard.

Real hard.

And I stand in awe of those people...

getting out of bed,

every single day,

putting their lives on and getting out there.

Sometimes, when the universe forces me to s-t-o-p and wait in a long line or

sit in traffic,

sometimes I tear up at the bravery of every single one of these people around me

cloaking themselves in the love of family or good music or faith or whatever
gets them through that day
and out into this hard world.

It's hard...no way around it.

But, then I read Rumi's ancient words

and find comfort.

I've experienced the violent sweep...

a crowd of sorrows,

 as Rumi so heartbreakingly writes.

I'm sure you have too.

And I have to admit that I never thought of that as a guest...or a guide.

Maybe now I can.

So, tonight, I'm grateful for my guest house...
for tomorrow's new arrivals...
and the chance at another day.

And, I'm grateful for you.

Working Myself Out of A Job

It's October...

pumpkins and falling leaves and that wonderful scent of changing seasons.

It also happens to be Down Syndrome Awareness Month.

My Facebook feed was blowing up today...

filled with cuteness overload of children who have Down Syndrome.

Of course, I smile big when I see this

because frankly, I don't see enough almond-shaped eyes with Brushfield spots in my daily world.

I live in a town of 60,000 people.

With the rate at which Down Syndrome occurs in our population - which is 1 in every 691 births - 

my son, Patrick, who is 16 should have almost 100 other people in our town with Down Syndrome.

If we're lucky, we have about 25.

There is not a single child with Down Syndrome who is my son's age in our town.

Not a year apart.

The closest child is 4 years younger or three years older.

Which makes it pretty clear that where I live many, many people chose not to have their child with Down Syndrome when they found out in utero that their baby had Down Syndrome.

What a colossal loss.

If only they could know, really know, what they missed out on.

But how can you explain it?

How do you advocate for someone's right to live?

How do you dispel the fear?

The ignorance?

The cultural bias against people who have a lower IQ?

Why would you choose to have your baby if it were diagnosed ahead of time with such a 

terrible, debilitating, sad condition?

Because the real truth is that having Down Syndrome isn't debilitating, terrible or sad.

What's sad is living in a world where people think that.

Living with people like Patrick requires an understanding that people need support.

Ummm...spoiler alert: we all need support.

If not right this minute, then later on down the road.

If you don't enter the world of disability as you age, you're dead.

There's no other option.

You need support as you age.

It's a given.

So why is it hard to give support earlier?

*****

Here's the deal, people like Patrick are just...

PEOPLE.

People who have likes and dislikes.

People who have strengths and challenges.

People who have hopes and dreams and crushing disappointments.

PEOPLE.

What people like Patrick need is equality.

If people like Patrick were equal, we wouldn't need Down Syndrome Awareness Month.

We wouldn't need to beg, cajole, nudge and encourage schools to open 

their typical classrooms to them.

We would see them working in regular jobs in regular places.

We wouldn't need separate proms, separate teams, separate camps.

We wouldn't need ultrasound.

Because your life wouldn't be up for debate.

We would just be together living our lives...figuring out ways to offer support and welcome.

And that, my friends, is the month, year, decade and century I want to celebrate.

I want to have a baby born with Down Syndrome and to never hear the words: 

"I'm sorry."

I want people to cherish and understand the incredible, astonishing gift that people with 

Down Syndrome bring to our world.

No, they are not happy all the time...

but they understand how to love deeply and with abandon.

If you are lucky enough to enjoy this love, you know how it feeds your soul.

This depth of love is special to the 21st chromosome.

People with Down Syndrome offer a lightness to life.

They offer kindness and graciousness.

They get the important things and have an honest way of cutting through the BS.

They really are needed in our world.

They aren't optional.

They offer a necessary message...

a must-hear letter from the universe:

This.right.here. love and kindness and light...

this is what matters.

So, join me, in dreaming of a day where nobody celebrates Down Syndrome Awareness Month.

Help me, work myself out of a job cheerleading for the basic rights of people with Down Syndrome.

I can't wait to just kick back and enjoy October.

Why YOU Should Write It Down

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


Today I went into Caroline's 4th grade class to share her great grandmother's Native American basket collection.
Normally, those baskets sit on a shelf in our den...
over-looked, dusty, forgotten.
But they tell a tale of weavers and people from long ago...
of a lady who loved to travel...
who collected baskets and carefully recorded the date she bought them, the type of basket and
the place where the basket was from...
that precious information, lost long ago.

I shared what I knew of Mary Compton Goni.
A botanist.
An avid bird-watcher.
An independent woman in a time when there weren't that many of those...
or maybe there were and we just don't know their names.

She created a place of refuge for her family
called Silver Lake.

Today, when I was talking about this amazing lady, I mentioned to the 4th graders that Mary had written a book about her life when she was 91 years old called Mary Remembers.
When Mary approached her 100th birthday, I took the time to read her thoughts and her amazing memories.

What a gift she gave.
Her stories of growing up in rural California and the remembrances of things once so important and now mostly forgotten, gave me a glimpse into a time and place I knew nothing about.
As I was telling the kids, they wanted to check her book out...ready to read her story.

If only Mary Remembers was at the local library.
Or available through Amazon.
Or easy to find on a Kindle.

Mary Remembers was printed privately as a gift for her family.
Mary printed only a hundred copies.

Tonight as I was reading it with Caroline, I turned to the last page...
wondering how she closed such an epic life.

She concludes with this gorgeous poem by Alfred Joyce Kilmer,
explaining that Alfred Joyce Kilmer was an American poet born in 1886 and
killed in the First World War.

I think that I shall never see
A poem as lovely as a tree
A tree whose hungry mouth is prest
Against the earth's sweet flowing breast
A tree that looks at God all day
And lifts her leafy arms to pray
A tree that may in summer wear
A nest of robins in her hair
Upon whose bosom snow has lain
Who intimately lives with rain
Poems are made by fools like me
But only God can make a tree.

This poem, long one of my favorites too, touched me tonight in a hauntingly beautiful way.
I never knew she found solace here too.

Mary's final words to us.
How essential.
Simple and sacred in its truth.

What final words would you choose?

I might have to vote for Mary's.
But that's the fun of writing...
I still have time to tumble a few around, wrestle with a phrase or two...
time to ponder and wonder and enjoy the beauty of words and ideas.
Time to read more poems.
Time to linger in the language.
Time to savor and cherish...
so grateful for this precious time.

*****

I would never know Mary's echo except that she took the care to write it down.
Her experiences, her reflections, her favorite verses shared in print.
A tiny piece of herself.

Why do we hold those so close?

Does your family know your favorite verse?
Your favorite song?
Your favorite poem or book or writer or artist?

Don't you think it's time you shared?

I do.