What I Want You To Know

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

*****

I have so much on my heart right now.

So much I want you to know.

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

YOU CHOSE LIFE!

When the world was telling you otherwise.

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

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

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

It is all going to be okay.

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

You chose life.

You won't regret it.

Ever.

Because by choosing life...

you really chose love.

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

love truly does conquer all.

If you make a choice out of a loving place,

you will always be right.

And if you choose fear,

most of the time,

you will be wrong.

Simple as that.

This precious baby is welcome and wanted and loved.

Right now.

In this moment.

And that is enough.

Having a baby is miraculous.

You get it.

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

Seeing your bright eyes.

Hearing your hopes and plans.

Watching you together...

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

You got this.

So what do I want you to know?

Don't listen to experts.

Don't listen to professionals.

You know best.

Oh wait, clearly, you know that already.

Ok, next...

Listen to your heart.

Follow your gut.

Open yourself up and the universe will guide you.

Oh, wait, you've already done that.

Clearly, you're awesome.

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

Snuggle and cherish.

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

It just goes too fast.

Your baby is good enough.

You are good enough.

And somehow 

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

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

Laugh a lot.

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

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

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

He paid a white-toothed-slime price.

But we still laugh about it many years later.

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

the ability to slow down.

Your baby's pace will be exactly right.

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

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

Each milestone will be savored and treasured.

Every step a victory.

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

for his presence.

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

Slow is beautiful.

That is my take away.

Slow it all down.

Take a lot of pictures (and videos).

Read a whole bunch of board books.

Shake some rattles.

Stare a lot.

Stare some more.

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

and it won't be lost on you.

You are brave, adventurous, loving and accepting.

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

Seems pretty fair to me.

You're my kind of people.

I'm honored to know you.

Welcome home.

Tony Tobin Elementary School -- What Do You Stand For??

*** Note: This might seem eerily familiar to my last post.  It is!! This is a special post written on behalf of a friend who is working full tilt to have her son attend his neighborhood school fully included.***

Do you ever wonder why

social change takes so long?

PEOPLE AWARE OF AN INJUSTICE

THOSE WHO CARE ABOUT IT

THOSE WHO SPEAK UP ABOUT IT

THOSE WHO GIVE MONEY

THOSE WHO GIVE TIME

THOSE WHO TAKE INITIATIVE

Be an ally.

*****

Beautiful Temecula, California holds an elementary school called Tony Tobin Elementary.

It's named after an amazing long time citizen of Temecula, Tony Tobin.

He was interested in recording his area of the world's history.  

He helped to build a museum and worked to save the historic chapel in town.

He was proud of Temecula and worked to make his city better.

Would he be proud of his namesake school?

Here is the mission statement of Tony Tobin Elementary:

"To ensure that each student will build a strong foundation of knowledge and skills, think independently, work collaboratively, and develop mutual respect and self-worth.  

Our school will set the educational standard of excellence of 

today, tomorrow and into the future."

That's a pretty noble mission statement.

I'd be pretty proud if I was the real Tony Tobin...

except for one tiny thing...

that mission statement doesn't seem to apply to all of its students.

It appears that if you have Down Syndrome, 

you don't get to attend the same school as your sister.

Monday was the first day of school and Hudson had to stand at the door of his home and watch his sister get her backpack on and head to second grade.

He had his backpack on.

He was ready for kindergarten.

He was uninvited.

To a public school.

His neighborhood school.

Alongside his sister.

Why???

Husdon, it turns out, has a little too much Down Syndrome.

Which, by the way, isn't even a thing.

People with Down Syndrome either have it or they don't.

They are all learners. 

They all have hopes and dreams.

Some might be more delayed but that doesn't mean they aren't learning.

What's going on in kindergarten that a child with Down Syndrome can't participate in?

Is it the social skills?

Well, let's be honest, Hudson won't be the only one who needs to work on that.

Is it the academics?

Pretty sure that Hudson isn't the only one who could use some extra help there.

Do you think that Hudson is so retarded that he can't "develop a foundation of knowledge, think independently, work collaboratively, and develop mutual respect and self-worth."

Pretty positive that Hudson could do every single one of those things with your guidance, support and high expectations.

Hudson isn't broken.

He doesn't need any fixing.

He just needs an opportunity.

The opportunity to go to his neighborhood school.

You know when they wrote the federal law in 1972, the authors had the audacity to write that "disability is a natural part of human experience and in no way diminishes the rights of individuals to participate in or to contribute to society.

Way back then, before the internet, Google, apps and Ipads, those visionaries thought 

BIG and BOLD.

They actually believed a person with a disability had the ability to learn and contribute.

How can Hudson learn or contribute if he can't even attend his neighborhood kindergarten?

How can he contribute if he is segregated?

May 17th, 2014 marked the 60th anniversary of the United States Supreme Court Decision of Brown vs.The Board of Education.

SIXTY YEARS ago the Supreme Court decided that "separate was not equal".

How in good conscience can you perpetuate segregation sixty years after the fact??

It is educationally unsound.

We have thirty years of research to support the academic and social success for students with disabilities who are fully included.

We also have the research for the rest of the kids.

Every single study.All of the research.Supports the positive social and academic benefits for typical students too.

We need bravery.

We need courage.

We need a whole crew of people to step up and shout that Hudson deserves to be here.

Right alongside their own kid.

Learning and growing.

We need voices.

We need action.

We need to live social justice and not just talk about it.

Come on.

Tony Tobin -- the school, the faculty, the parents, the students -- where are you??

Do you even know this is happening?

*****

I know because I've lived it.

My own son, Patrick, who also has Down Syndrome, went to kindergarten at 

St. James School in Davis, California.  

His neighborhood school...six houses away from our house.

He actually went to first and second and third and fourth and fifth and sixth and seventh and yes, even eighth grade there.

Fully included.

He just graduated this year.

Was it perfect?

Nope.

Did we learn a lot?

Yep.

Was it worth it?

Most definitely.

Could we help you??

Of course!!

I've got not just one kindergarten teacher but two that would be willing to help.

(Heck, I've even got a couple of principals who would talk to you!)

They are amazing teachers and yes, they believe that Hudson can learn 

alongside of his classmates.

In fact, they know he will read and write and learn his math facts just like the rest.

It might take some more repetition.  It might take several different ways.

But it will happen.

In Hudson's way. In his timing.

And it will be exactly right.

And, I'd love to have an excuse to visit you down in beautiful Temecula 

and introduce you to Patrick...heck, maybe I could even meet Tony Tobin himself!

I'd love to do an inservice for your teachers and share what we've learned.

I work with beginning teachers as my job with our local university, UC Davis.

I can send you a resume.

And guess what?

We know what to do.

We know the teaching techniques that work.

We know what apps work.

We know how to use technology to help learners like Hudson

...and here's the good part...

that research, that technology, those teaching techniques won't just help Hudson, 

they will help all of your struggling learners...

and let's not pretend that Hudson is the only student who struggles.

There's a guaranteed  10% that struggle.

In every classroom.

Your entire school will benefit with Hudson's inclusion, both academically and socially.

Here's another mind-blower:

In the entire United Kingdom, it is standard practice to place every child with 

Down Syndrome into their neighborhood school fully included with support in kindergarten.  

If it's good enough for the UK, don't you think Tony Tobin Elementary could try?

I know you want to do what's best for Hudson 

and the rest of the students who attend your school.

I know you care.

What's best for Hudson (and the entire student body) is creating an environment that allows Hudson 

to learn at the same school as his sister.

What's best for Hudson (and the entire student body) is the message that he is valuable.

And worthy.

And good enough.

That's how you develop "mutual respect and self worth."

You actually walk the walk and talk the talk.

You live it.

As a school.

It stops becoming just some words on a website and starts to actually become the vision for your school.

ALL students can learn here.

ALL students are valuable.

We'll find a way.

Can you imagine how proud Tony Tobin would be??

Can you imagine how proud you would be as educators??

No one gets into education to be a separatist and exclusive.

Educators by their very nature love the underdog.

You should love your struggling students in such a way that they feel valued, honored, supported and expected to do great things

...and then watch what happens...

they'll do just that.

They will rise to the occasion.

They just need an opportunity.

Access to the curriculum.

And an unwavering belief that they will achieve.

Tony Tobin could put his name to that.

Stop being afraid.

Stop thinking you can't do this.

You just have to believe it is possible.

Do you think it's an accident that Hudson's mom and I crossed paths?

I don't.

I know it's what the universe intended.

Here is Patrick on his graduation day, May 30th, 2014.

It is my fervent hope that Hudson's mom will be inviting me to Hudson's graduation from his fully inclusive placement in 5th grade at Tony Tobin Elementary in six years.

Believe it.  

Mary, Queen of Peace, Where Are You??

Do you ever wonder why

social change takes so long?

PEOPLE AWARE OF AN INJUSTICE

THOSE WHO CARE ABOUT IT

THOSE WHO SPEAK UP ABOUT IT

THOSE WHO GIVE MONEY

THOSE WHO GIVE TIME

THOSE WHO TAKE INITIATIVE

Be an ally.

*****

Mary, Queen of Peace, where are you??

Today is the first day of school and Chris doesn't get to start Kindergarten.

Why??

At your school, with your name, with your strength and wisdom and history of miracles,

they said no.

Even though he was there in the prekindergarten last year.

Chris, it turns out, has a little too much Down Syndrome.

"He's severely effected."

Which, by the way, isn't even a thing.

People with Down Syndrome either have it or they don't.

They are all learners.

They all have hopes and dreams.

Some might be more delayed but that doesn't mean they aren't learning.

What's going on in kindergarten that a child with Down Syndrome can't participate in?

Is it the social skills?

Well, let's be honest, Chris won't be the only one who needs to work on that.

Is it the academics?

Pretty sure that Chris ins't the only one who could use some extra help there.

Is it the idea that every single one of us is holy and sacred and made in God's image?

**That's a core belief of Catholicism and one of Mary's shining lights.**

Is Chris not holy enough? 

Sacred enough?

Is he broken??

No.

Hell no.

He is made in God's image, exactly as God intended.

He is beautiful.

He is irreplaceable.

He is miraculous.

Mary, Queen of Peace, yes, she knows this.

Mary, Queen of Peace, the school, near St. Louis, Missouri, 

is apparently still trying to figure it out.

We need bravery.

We need courage.

We need a whole crew of people to step up and shout that Chris deserves to be there.

Right alongside their own kid.

Learning and growing.

We need voices.

We need action.

We need to live social justice and not just talk about it.

Come on.

Mary, Queen of Peace, the school, the faculty, the parents, the students, the priests, the parish...where are you??

Do you even know this is happening?

How much do you believe in Mary, Queen of Peace?

She makes miracles happen.

She comforts.

She leads.

She defends and protects.

Let her show you the way.

Trust her.

Watch what happens with a little faith and effort.

I know because I've lived it.

My own son, Patrick, who also has Down Syndrome, went to kindergarten at St. James Catholic School in Davis, California.

He actually went to first and second and third and fourth and fifth and sixth and seventh and yes, even eighth grade there.

He just graduated this year.

Was it perfect?

Nope.

Did we learn a lot?

Yep.

Was it worth it?

Most definitely.

Could we help you??

Of course!!

I've got not just one kindergarten teacher but two that would be willing to help.

(Heck, I've even got a couple of principals who would talk to you!)

They are amazing teachers and yes, they believe that Chris can learn 

alongside of his classmates.

In fact, they know he will read and write and learn his math facts just like the rest.

It might take some more repetition.  It might take several different ways.

But it will happen.

In Chris's way. In his timing.

And it will be exactly right.

And, I'd love to have an excuse to visit you near St Louis and introduce you to Patrick...

I'd love to do an inservice for your teachers and share what we've learned.

I work with beginning teachers as my job with our local university, UC Davis.

I can send you a resume.

And guess what?

We have the educational research to help you.

We know what to do.

We know the teaching techniques that work.

We know what apps work.

We know how to use technology to help learners like Chris

...and here's the good part...

that research, that technology, those teaching techniques won't just help Chris, 

they will help all of your struggling learners...

and let's not pretend that Chris is the only student who struggles.

There's a guaranteed  10% that struggle.

In every classroom.

Your entire school will benefit with Chris's inclusion, both academically and socially.

This has been documented time and again with research and 

this is what we've seen at St. James.

Here's another mind-blower:

In the entire United Kingdom, it is standard practice to place every child with 

Down Syndrome into their neighborhood school fully included with support in kindergarten.  

If it's good enough for the UK, don't you think Mary, Queen of Peace could try?

I know you want to do what's best for Chris 

and the rest of the students who attend your school.

I know you care.

What's best for Chris (and the entire student body) is creating an environment that allows Chris to learn at the same school as his sister.

What's best for Chris (and the entire student body) is the message that he is valuable.

And worthy.

And good enough.

That's the message you want to send.

Stop being afraid.

Stop thinking you can't do this.

Open your heart to Mary, Queen of Peace, to the Holy Spirit, and to Jesus Christ and 

let it all unfold.

Do you think it's an accident that Chris's mom and I crossed paths?

I don't.

I know it's what God intended.

I can see God's hand in all of this.

Your school's name is no accident.

Patrick's kindergarten teacher 

(who wasn't too sure about Patrick going to kindergarten there)

signed every letter she wrote home to the parents with this phrase:

"With God, all things are possible."

Once I saw that, I knew we had a chance.

And we did.

Here is Patrick on his graduation day, May 30th, 2014.

Yep, miracles do come true.

Believe it.

Doing Without

So, my family and I went up to one of our favorite family spots.

I wrote about it a couple of years ago: here.

It's called Silver Lake.

It should be called Sliver Lake....since it's just a tiny spot...a sliver in the woods.

Found in 1938 by my husband's grandmother, Mary Goni.

There's a cliff made of giant boulders.

A blue lake fed entirely by snowpack.

Pine trees, crown blue jays, chipmunks, bats that feast on the bugs at dusk and osprey.

Those osprey soar all over the lake, high up, searching for their perfect tasty morsel and then scoop that unsuspecting fish right out of the lake with the most amazing no-shirk-grip talons you've ever seen.

I've seen those birds snatch up their dinner many times and each time I'm the one who's unsuspecting...

wanting to yell, at somebody, anybody, "Did you just see that??!!"

A bird plucked a fish straight out of the lake!!

Can the bird get a standing O right now?

I feel like the guy from Mutual of Omaha's Wild Kingdom...full front row seat.

Breathless.

Visiting Silver Lake takes some concessions.

You have to be able to let go of the internet.

There's no cell reception.at.all.

Off the grid.

This is both an endearing quality and a maddening one.

You have to let go of electricity.

None.

You live by candlelight and roaring fires and get in the rhythm of the natural light.

I feel both Amish and woodsy in a Little House on the Prairie way that just works.

Don't mind it at all.

You have to let go of plumbing.

You use an outhouse at Silver Lake and it's actually completely fine.

Yes, you're in a house.  Yes, there are bathrooms and showers.

But, they just don't get used.

(Exceptions are made for very young children. Read: babies. But that's it.)

But this time...this time the well was dry.

Bone dry.

Not one single drip came out of the kitchen sink faucet.

Nothin.

It was eerie.

It was comical. (at first)

It was one more rung on the doing without ladder...and I wasn't expecting it.

True. California is in a severe drought.

True. We have always brought up a couple gallons of water just to be safe.

True. People stayed at the cabin before us and that doesn't usually happen.

Spoiler alert: I should have known better.

So, my family spent four days and used six gallons of water.

Total.

Six people and a dog.

6 gallons.

I developed wizarding skills that could rival Hermione in my dishwashing ability.

We got creative...and miserly...and downright scavengerish.

I even looked at Buddy's water bowl in a whole new way...resentfully.

(and I'm one of those crazy dog-loving people!)

Funny what a little deprivation feels like.

In truth, we had plenty to drink and eat.

We stayed in a house that sleeps 12.

It's just that it had no water.

It had a gorgeous lake to swim and canoe and kayak and play in.

It had rocks to climb.

Hikes to take.

Wildlife to watch.

Best of all, we were together.all.of.us.

Candlelight monopoly games.

Talking and laughing and just being together.

Sleepy mornings and fireside s'mores.

It's truthfully a little slice of heaven...

just without any water.

So, I watched my kids deal...and no complaints came.

The eight year old loved Silver Lake with even more abandon and wonder than last time.

The 15 year old was more worried about the lack of electricity for his Iphone.

The 19 year old was freaking out about trying the gigantic huge rope swing...steeling herself for the moment of truth.

The 21 year old...well, he got it.

#welcometoadulthood

It cut our time short.

It made me focus on something that's been in my peripheral vision for quite awhile.

I've been taking water for granted for far too long.

Mostly, it made me a sister to the millions of mothers who must walk to clean drinking water 

and carry it home.

Only for me, I knew I was a car ride away from that craziness,

 a long car ride, 

but still.

So tonight I am grateful for a faucet that runs...

grateful for a hot shower...

and a flushing toilet inside my home.

But mostly I'm grateful for those five people and one dog that graced my days at Silver Lake.

Sure, we weren't expecting to play a real life game of Survivor.

Sure, our kitchenware didn't win any cleanliness awards and 

we used way too many disposable dishes.

But we were together...

unplugged and in the candlelight...

it doesn't get any better.

Thank you Mary Goni.

Those kids don't even look thirsty!
#waytoomanycokesthistrip