God's Greatest Gifts

I don't know what you hope for, long for or dream about.

I can just share with you the dreams in my heart.

Ever since I was a young, young child I dreamt of being a mom.

I know this is TMI and I know Mary Kate will be cringing as I share this...but, I got my period super late in life -- 15 years old -- sophomore in high school -- in other words, ancient.

Before that time, I knew that if you didn't have a period, you couldn't have a child.

Trust me, my reproductive knowledge was greatly limited but that I knew way down deep.

So my prayer for years was, I kid you not:

Please, please please God, let me get my period.

Let me have kids.

They were always called kids in my adolescent mind.

Always plural.

Not snuggly babies.

Or baby dolls.

Kids...and I wanted plenty.

I guess God knew my heart because he helped me find the right guy and gave me the joy of four great kids.

Four.

That still seems a bit greedy on my part.

I never thought it would be four...but I learned with my very first pregnancy -- which ended with a miscarriage -- that I was most definitely not in any sort of control.

These four are by far my greatest gifts.

My biggest joy.

My purpose.

They are the thread that helps everything else make sense.

I see my children in every child I encounter.

I see every mother in me.

I see every family in mine.

That separation that existed between me and the rest of the world felt a little less with Jack and Mary Kate but it fully disappeared with Patrick's presence.

Suddenly, the marginalized were part of me.

The "broken".

The disabled.

The slow.

The people that others look away from...the people that others don't discuss...that are okay to terminate...those people were now part of me.

There was no way to love Patrick and not see them too.

I look at the way Patrick has changed me and I think of God's gifts.

My dream as a teen...so limited and finite...busted wide open with the realness of His gifts.

It was way better than any dream of mine.

How could I know what to wish for?
Little, sweet Caroline?
How could I know to ask for such wonder?

I never could have imagined it.

Four busy, funny, quirky, messy kids.
Old and young.
Fast and slow.

All I can say is thank you.
Thank you for my kids.
Thank you for the joy that comes with
loving,
 guiding,
 watching,
 hoping,
fighting with and for...

and for the heartbreak.

For in feeling so deeply we get close to what really matters.
This, right here, this moment, this meal, this day is what counts.

Thank you, God, for your greatest gifts.
Put my tiny dreams to shame, no doubt.

What Love Is

So...do you remember the young couple I wrote to over here in the blog piece, 

What I Want You To Know?

Well a lot has happened since that time.

Just a few days after that post, sweet baby Jonah was born nine weeks early.

It was a traumatic birth for both mother and baby...brutal, difficult, scary.

all.the.way.around.

Not one single step has been easy for sweet Jonah.

There were definitely moments where Jonah's life was in danger as well as his mom's.

Do you know what I've seen from Jonah's mom and dad, time and time again?

LOVE.

I've seen shy smiles.

I've seen tenderness and gentleness and overwhelming care for their tiny bundle.

They've been there waiting to hold him, love him, whisper to him and talk to him.

They've read him board books, brought loved ones over to see him and generally have been keeping vigil over their most precious son.

This, my friends, is what love looks like.

While ISIS does it's vicious, evil deeds in Syria and Iraq,

while Ebola becomes a common topic for discussion,

a new mom and dad are over here loving their precious son...

and letting him know in every way, every day that they are here for him.

Love is so very patient...tending and watching.

Love is kind...to nurses and doctors and others who are in the way...but always to that bundle.

Love isn't asking for an easier path.

Love isn't rude or self-seeking or easily angered.

Always protecting.

Always trusting.

Always hoping.

Love shows up.

Day in and day out.

Even when it's really hard and you don't want to.

Sweet baby Jonah is doing much better.

He's still in the hospital but he's getting chubby.

He's had his surgery for his intestinal blockage.

He's even had a bath!

He's getting real nutrition and beginning to have opinions...which is always a good sign.

Jonah is blessed to know deep, abiding love.

I couldn't be more grateful for Jeff and Melissa's example.

They are grace-in-the-ordinary dealing with extraordinary circumstances.

Melissa and Jeff -- congratulations to you both.

Through your love for each other and for Jonah you are changing the world.

We can't help but want to be more like you.

Love never fails.

You know that.

Thanks for the reminder.

Brave in September

Remember when I talked about wishing out loud? Well, here goes...Jack is graduating from college in May.  That's right, clearly, I was a child bride, and my oldest is now old enough to be darn close to a college graduate.  

That means that I've been thinking and wondering and pondering about the many, many wonderful gifts of congratulations I could give him.

I got nothing.

And then it came to me...I will give him my words.

For the next ten months, I'm going to write one blog post a month, just to him. And then at the end, in May, I will find a way to publish just those ten posts.  It can't be that hard,right?

How cool would it be to give him an actual book?

So, I'm wishing out loud.

right here.right now.

Physical book to wrap up and hand over.in May.

*****

Dear Jack,

So, do you remember way back in 2011, when things were very very unclear and you were going down to Los Angeles but we weren't sure what that would look like and we weren't sure how that first semester was going to go and it was all confusing and cloudy and funky?

I do.

It was then, at that point, that one day I was walking down B Street with Caroline -- her tiny five year old hand in mine, when we began a conversation about all of the changes going on in her life.

One of her favorite people on the planet was leaving her world -- hint: you -- and she was beginning kindergarten and she was scheduled to go to the dentist for the very first time and that was the one biggie we were talking about.

And she kept walking and sort of mumbled, 

"I don't want to go to the dentist.  I'll be brave in September."

I stopped and was shocked at the beauty of that.

Brave in September.

Her five year old self figured out that human of all traits: 

postpoing the hard stuff.

Yep.  She wanted to avoid.

Avoid.Avoid.Avoid.

I got it.

I really did.

In fact, I was in the aovid-at-all-costs mode right then too.

I didn't want to think about my family changing.

Didn't want to contemplate you being out of my daily life.

Didn't want to deal with my dirty house.

My back-logged work.

All of the many things I'd been avoiding for a long long time.

But when Caroline said that it made me contemplate my avoidance techniques.

I needed a due date.

September.

September became synonymous with pausing the big old freight train of life and checking out what I had shuffled under the rug.

In September I would face it.

Caroline never knew she gave me that gift...but ever since, I've used September as my get-it-done month.  

I've tried to be brave in September.

Maybe it was Patrick who made me brave...

it was his heart surgery that made me want to run for the hills.

I remember nursing him just two days after open heart surgery and looking right in his eyes and saying, 

"You are making me brave, Patrick. I can't believe I'm doing this."

All those Septembers ago I just didn't think I could do it...

but I had no choice.

And I got through it.

As you get older, you tend to put off more and more things.

You don't travel to the places you think about because the time never seems right or you don't have the money or you should be more responsible and use your time or money some other way.

You don't go after the job you think you should...or the education that you need...

or the _____________ . (insert dream here)

You have lots of reasons and most of them are very mature.

Other adults nod and understand because they are putting stuff off too...

or just not dreaming anymore.

So that's where you come in.

I am so proud of you.

Immensely proud of the man you have become.

As far as I can tell, you don't put things off.

You seize the opportunity.

You find a way.

You gut though.

Just like you did in that crazy, awkward, kind-of-in-kind-of-not first semester at college.

I guess I just want to encourage you to always live like that.

Don't let adulthood be the excuse for not trying something.

Don't let "real life" bog you down.

Please, please, please continue to dream and reach and fight back when you get shot down.

Cause it's gonna happen.

Life has a way of wearing you down.

Stop right now.

Listen to your heart.

What are your wild and precious hopes?

List them all.

Even if they seem crazy -- especially if they seem crazy.

Those are usually the best ones.

Promise yourself to be Brave in September and set a due date.

Go for it.

Most of all, know that you can do the hard things...

you can make the miracles happen...

you will find your way.

It doesn't have to be perfect 

or sane

or what I think is right.

It just has to be yours.

Hold it close...use the flint...blow on it...and light that fire.

It's gonna be amazing.

That hero is YOU!

I Know She Can Do It...But, Why Do I Have To?

courtesy of Katie Daisy Art

One day after I came home from dropping her back off at college to begin her sophomore year,
I steeled myself for the pain of the fridge.

Like the ice bucket challenge, I knew it was going to take my breath away, make me cringe, force me to do something I really didn't want to do at all.
I was going to have to deal with the ingredients...
her ingredients.

You see, my little chickadee likes to bake.
She bakes when she's bored.
She bakes when she's nervous or stressed-out.
She bakes for no reason...just to get a nice smell in the house.

Someday, she is going to make her own family very very happy.

Now, you understand my thickening middle.
When you next see me, just smile with understanding and kindness...please?

In that fridge, I found ricotta.
(For the record, never, in my adult life have I purchased ricotta.
Mary Kate has purchased more in her teen life than most non-Italians have in their whole life.)
For Ina Garten's Ricotta Orange Pound Cake...or maybe that's Giada's recipe?
I found chocolate frosting...left over from Patrick's Heart Day cake.
I found a whole tray of Lonna's insane pumpkin bars only partially eaten.

We are human after all -- our stomachs are finite.

What's a mom to do?

I lingered over the ingredients but knew they needed to go.

She's not going to be back until Thanksgiving...and by then it will just be gross.
Better to dive in right now, peel off the band-aid and face the truth.
She's gone -- for awhile.

Four plates at our table, not five.
No more blaring country music when I start my car.
No more moments of friction for dirty dishes, underwear lounging in places it shouldn't or endless TV marathons.

Dang it.

I know.  I know.
It's what you want and hope and pray for.
This is a very good problem to have.
She's happy.
She's found her spot.

It's just that I'm not in it.

My girlie and I go round and round.
Ours is not the companionable, mellow, obedient, docile relationship that some mothers and daughters seem (from the outside) to have.
Mary Kate and I have contentious, fractious moments.
But she trusts me with her confidences.
She shares herself.
She makes room for me...and if that isn't the biggest gift ever for a mom,
well then I can't think what it could be.

We just want a tiny, little bit of room.
A text.
A funny phone call.
A silly facebook inbox.
A tweet.
A shout out.
An Instagram shot, tagged with a hilarious hashtag.
Any tiny morsel.

Cause you know why?
You've got the whole kit and caboodle from us over here.
You have our whole heart.
Our full attention.
Our breath inhales and exhales with thoughts of you.
All the time.
Even when you think we aren't looking...
we are.

So baby girl, while I know you are flying high.
Send a feather or two to your ground crew.
We already miss you and it's been two days.

Dang it.

Be careful.
Be safe.
Be noble.
Be great.
Be smart.
Be funny -- that's a for sure.
Be honest.
Be gentle -- to others AND yourself.

But don't forget to just be.

Just sit in that wonderful quiet and know yourself.

You're pretty great.

Go show the world.

Your fan club awaits.

The Egg and The Thank You

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

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

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

Awesome.

The dog is freaked out.

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

I asked into the darkness if anyone was there.

It was quiet.

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

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

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

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

and I saw it.

An egg smashed on my window.

I opened the window and looked around.

Suddenly I'm Sherlock.

I search every other window in my house.

I patrol outside.

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

But why?

What's controversial?

What have I done that would need an egg punishment?

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

Could Patrick have bothered someone?

Who throws an egg at someone's house?

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

I felt bruised.

Embarrassed.

Guilty.

Dirty.

Ugly.

Ashamed.

Like I had done something wrong.

Like someone I loved had done something to deserve it.

John blew it off as a kid-thing.

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

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

I knew I needed to break out of my funk.

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

this tactic is very effective.

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

I couldn't shake it.

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

I had egg on my face.

Finally, it was time to walk Buddy again.

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

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

I had my armor on after all.

I got to the end of my walkway and stopped.

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

I was floored.

Who could that be?

I hadn't revealed my egg shame to anyone.

No one was around.

Those flowers weren't there this morning.

Where had they come from?

It actually didn't matter.

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

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

A tiny act of kindness.

The tiniest.

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

straight from the universe.

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

they do, indeed, keep the darkness at bay.

Your job tomorrow: do a small thing.

One simple act of kindness and love.

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

Go ahead.

I double dog dare you.

Sprinkle the world with some love.

We all need it.

You never know what you might wash away.

What I Want You To Know

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

*****

I have so much on my heart right now.

So much I want you to know.

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

YOU CHOSE LIFE!

When the world was telling you otherwise.

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

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

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

It is all going to be okay.

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

You chose life.

You won't regret it.

Ever.

Because by choosing life...

you really chose love.

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

love truly does conquer all.

If you make a choice out of a loving place,

you will always be right.

And if you choose fear,

most of the time,

you will be wrong.

Simple as that.

This precious baby is welcome and wanted and loved.

Right now.

In this moment.

And that is enough.

Having a baby is miraculous.

You get it.

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

Seeing your bright eyes.

Hearing your hopes and plans.

Watching you together...

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

You got this.

So what do I want you to know?

Don't listen to experts.

Don't listen to professionals.

You know best.

Oh wait, clearly, you know that already.

Ok, next...

Listen to your heart.

Follow your gut.

Open yourself up and the universe will guide you.

Oh, wait, you've already done that.

Clearly, you're awesome.

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

Snuggle and cherish.

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

It just goes too fast.

Your baby is good enough.

You are good enough.

And somehow 

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

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

Laugh a lot.

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

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

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

He paid a white-toothed-slime price.

But we still laugh about it many years later.

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

the ability to slow down.

Your baby's pace will be exactly right.

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

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

Each milestone will be savored and treasured.

Every step a victory.

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

for his presence.

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

Slow is beautiful.

That is my take away.

Slow it all down.

Take a lot of pictures (and videos).

Read a whole bunch of board books.

Shake some rattles.

Stare a lot.

Stare some more.

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

and it won't be lost on you.

You are brave, adventurous, loving and accepting.

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

Seems pretty fair to me.

You're my kind of people.

I'm honored to know you.

Welcome home.

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.