Regaining Paradise

Today is World Down Syndrome Day!

Yes, every March 21st, the world who knows about Down Syndrome goes crazy.

Cupcakes are made.

Colorful socks are worn.

Blue and yellow come out.

Lots of cool videos fill up Facebook's newsfeed for people who care about it.

Mostly, it's a chance to tell a story.

Mary Kate came home from college today.

She was sharing her new favorite music and within one of the songs was a cut to a TED talk.*

*(One of my favorite ways to "waste time" on the internet -- amazing people sharing their passion, their intelligence and their experience in video format.)

She stopped and found the TED talk and told me to watch it.

She said that her writing teacher had taken the time to show it to her class.

  Here it is.

It's called The Danger of a Single Story.

The speaker is Chimamanda Ngozi Adichie, a successful writer 

born in Nigeria and now living in the US.

I urge you to watch it.

(For some reason, the video doesn't seem to work with Iphones, here's a link to it:  http://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story )

Chimamanda speaks eloquently and passionately about the danger (and oppression) of knowing only a single story about a people, a culture, a race, a country.

She reminds us that this is truly a message of power.

Those with the power tell the one and only story.

Underrepresented groups, disadvantaged people, countries without electricity or clean water have other people tell their stories.

They tell them one way.

As I sat there, I began realizing that this was the problem for people with Down Syndrome too.

The people with the power have told the one story over and over again and it goes something like this:

You are dumb.

You are cute.

You are a burden.

You need help.

You are clumsy and awkward and ugly and disabled.

We have Chris Burke from Life Goes On or Becky from Glee.

That's it for people with Down Syndrome in the media.

Someone in power told those stories too.

Here's my story:

Patrick and I can communicate by text insanely well.

He can find anything he wants on Google...scary good.

Patrick loves to dress up and feel handsome.

Patrick has dreams and plans for his future.

(They don't involve hanging out at home.in.any.way.)

Patrick reads, writes, prepares and dreams big....Broadway show big.

Patrick just figured out how to ride a bike at age 13.

He learned to swim well at age 11.

Skateboarding, surfing, windsailing are going to be difficult, difficult things to learn for him.

Physical coordination is hard won for him.

That doesn't mean he can't do it...just that it will be hard. (for me too, by the way)

Patrick takes out the garbage and makes his bed...on a good day...on a bad day, it doesn't happen.

Patrick is a 14 year old kid.

He really hates that he still has to listen to his parents.

I tell him to get in line...complain to his friends...all teen-agers hate it.

You're supposed to.

My dream is for Patrick to one day tell his story...and for Tommy and Hayden and Gretchen and the many, many others to stand up and tell theirs.

Chimamanda says: "Stories can break the dignity of a people but stories can also repair that broken dignity."

She ends with this powerful message:

"When we reject the single story, when we realize that there is never a single story about any place, 

we regain a kind of paradise."

I need you to tell your stories.

Go out there and regain paradise.

Our kids deserve it.

My dream:

to dismantle the need for World Down Syndrome Day.

Tell the stories...take back the power.

The world needs to know.

I Got Another One

Yesterday, I ignored my outrageous pile of clothes that needed folding.  

I plucked through them and pulled out Patrick and Caroline's clothes for the next day.  

I gathered them and looked at them and held them close.

I breathed them in and closed my eyes.

I have one more day of doing this...

this...

the mundane...

the boring...

the rituals of living...

I got another day...

she did not.

A lady in my town that I only knew as a "friend of a friend" passed away.

She leaves behind so many, including her son, age 14, and her daughter, age 11.

No more packing lunches.

Figuring out carpools.

No more chances to argue about clothes...

or bedtime...

or homework...

or showering.

No more music that reminds her of something special.

No more silly jokes.

No more snuggles...

or books that keep you reading until way too late...

or chances to try again.

Honestly, sometimes this world is too hard.

Why did she have so few days?

Why do I have more?

No clue.

I wish I could make sense of things that seem utterly wrong...

and rotten.

But I'm no sage.

I just get another...

and I'm not taking it for granted.

I'm going to squeeze this day like it's a soggy pool towel...

kiss my babies about a hundred more times than necessary.

Text those two that think they're big.

Hug that hubby.

Snuggle the pooch.

Dance.

Sing.

Write letters.

Check crap off that enormous list of stuff to do...and smile while doing it.

I get another day!

I'm going to eat good food.

Buy a brand new baby girl something special.

Plan a trip.

Daydream.

Make time for yoga.

Kiss long and hard that sweet guy who spends his days with me.

I'm gonna thank my mail lady.

I'm gonna buy someone a coffee.

I'm gonna give someone the benefit of the doubt.

And pay that parking ticket.

No more nagging.

No more procrastinating.

No more delaying.

I got another.

How to cherish it?

How to hold it dear?

How to make it count?

Fill up that grateful spot and let it flow...

let the universe know how much you love this time...

precious time...

always ticking away...on the good days and the bad days...

Today, you have another...

one more chance...

one breath at a time...

one smile at a time...

let's enjoy it.

It's not coming back...
but it's ours right now.
Grab it.

"I still find each day too short for 
all the thoughts I want to think, 
all the walks I want to take, 
all the books I want to read, 
and all the friends I want to see."  
-- John Burroughs

Speak Up

"Nearly all men can stand adversity,

but if you want to test a man's character, give him power."

--Abraham Lincoln

Holy Moly!  We have a full "As The World Turns" going on in my little town.

It's crazy.

It's ludicrous.

It would be something worth talking about if it didn't involve coaches and kids...make that one kid.

But maybe that makes it even more worth talking about.

We have a school board that governs our schools.

We have 8 elementary schools; three junior high schools; three high schools and a whole group of people who choose 

"independent study".

That's a lot of students, gobs of teachers and plenty of administrators for five people to attempt to guide.

It's a thankless job.

Let's establish that right now.

There are long hours, lots of emotion, endless need and never enough money.

Very, very few take the time to thank our school board.

Plenty find a way to complain.

That's the nature of the beast.

I have a good friend who has just begun her tenure on a school board in a neighboring town.

As a teacher and a parent and a citizen, I get it...big time.

However, it's time to shed some light.

What is going on??

Who is in charge?

Is it really possible for one parent who is on the school board to demand an "investigation" about their one child getting cut from a sports team -- that actually costs over $22,000 -- and not have a full rebellion from all parents, educators, administrators and anyone else who cares about our schools and our town???

Is it really possible to stay quiet and just feel disappointed??

Let's start with some unpleasant facts...if you're on the school board it is your job to stay neutral and on the side of the schools.

Yes, even if your own child gets cut from a team and you feel it was unfair.

Even if you feel that the coach is doing a poor job.

You are supposed to have faith in the system you are a part of...you are supposed to trust the process.

It is a breach of your privilege of being on the school board to actively work to fire a coach.ever.

Frankly, you shouldn't have that level of power.

Once that process began, the rest of the school board had the hard job of confronting a person who was misusing her position of power.

The rest of the school board has shirked its duties.over and over again.

Allowing $22,000 to be spent on an "investigation" about one student and one coach is unconscionable.

Let's list some things that $22,000 could be used for in our district:

1) a half time school counselor at the high school level

2) 44 Ipads to use in any school

3) a new roof on any school 

4) updated heating/cooling system

5) professional growth for an entire staff or two at a school site.

5) filling an entire school library with new books

We still don't know who authorized the "investigation" -- we don't know why the "investigation" created a 72 page report -- and we don't know why it cost $22,000.

We have a right to know and to see through these proceedings.

After all, we're paying the tab!

When we are quiet about this as citizens, guess who loses?

Our kids.

Our teachers.

Our coaches.

Those coaches work for a pittance.

They have to deal with way too much as it is already to allow this disgrace to go unfettered.

Coaches need respect.

Coaches need positive support.

Coaches are doing the best they can.

Can they do better?

Sure.

We all can.

Yes. Students get cut from teams.

That's how competitive teams work.

If you don't like that, don't participate.

Yes. My own children got cut from teams.

And yes, I watched someone get cut from a team in part because of the way she spoke to her mother on the phone.

The captain of that team made a comment to the coach about that behavior and yes, that mattered.

It should.

It speaks to how that person would be on a team and as a team-mate.

Should a person be cut from a team because his/her parents are difficult??

Well, that's up to the coach.

And, yes, that's his/her call to make.

We need to stop what we're doing as individuals in our town and let our kids and teachers and coaches know how important they are.

We need to speak up.

Someone's got to...

because when we're silent, we give the impression that it's all  okay.

And, ummmmm it's not.

Not even a little.

We give the impression that we're fine with it.

And, I'm not.

Not.at.all.

Where's the grace???

In the coaches and teachers and students who still have faith.

Who still trust the process.

Who believe that it will all work out, 

if they just keep working hard and keep their eyes on the prize.

It's for them that I write this.

You, yes you, are my inspiration.

Keep at it.

We've got your back.

No One Is Alone

"Sometimes people leave you halfway through the wood.

Others may deceive you.

You decide what's good.

You decide alone.

But no one is alone."

--Into The Woods

So tonight Patrick had to write down all of his various entries that would be placed under his name on his yearbook page.

He's in 8th grade in a K-8 school...the top of the heap.

It's the big time.

First he had to list his interests.

Basketball, swimming, drama, musicals, music, traveling and Broadway made the list.

He wanted to add that he was a "love expert" (his favorite phrase from the movie Frozen, other than "Let It Go" the Oscar award-winning theme song from it) but I told him that it would be vetoed by the yearbook editors.  

They're picky this year.

Next, he had to list people he most admired:

Sarah, Steve, Ashley, mom and dad. Jack, Mary Kate, Caroline and Miah.

First off, can we chat?  Are John and I a two-for-one deal??

Are we not separate entities?

Not in Patrick's mind on this day or so it seems.

Miah's name made me smile...Miah placed Patrick in her list of people she admired in last year's yearbook.  I forgot that kindness but Patrick did not.

Finally, we had to think of an inspirational quote.

We started talking about favorite lines from movies and plays.

He was really pulling for one of the many funny lines from Frozen by Olaf the snowman but I told him those yearbook editors wouldn't go for it.

So he turned to his old stand by, perhaps his favorite Broadway play of all, Into the Woods.

Just like that, it appeared.

Like a comic strip speech bubble above his head:

"No one is alone."

As soon as he said it, he knew that was it.

He tumbled and tossed some others around:

"Opportunity is not a lengthy visitor." being a solid number 2.

But he just kept coming back to the fav.

No one is alone.

Truly, no one is alone.

This child of mine, so divinely placed, just knows how to get to the heart of what matters.

I cried in the days after Patrick's birth, believing, however erroneously, that I would never make another friend...that Patrick was my barrier, my wall, my fortress.

Honestly, I couldn't have been more 100% wrong.

I would laugh at the old me...right out loud in an exuberant way...knowing the life I have right now...so full to the brim with new amazing, heroic, inspirational people that have crossed my path all because of Patrick...if I didn't cringe at the sheer number of abortions caused by that same fear and prejudice.

I want you to know..no matter how afraid you are...no matter how unsure...no matter what is going down in this difficult journey we call Life...that Patrick speaks the truth.

No one is alone.

You may feel isolated.

You may feel like a freak.

You may feel unlovable, unknowable, unforgiven but that is just the story you tell.

As they say so wisely in Into the Woods:

(and perhaps this is my favorite quote)

Careful the tale you tell,

that is the spell.

Children will listen.

So tonight, another sprinkle of glitter came my way on my path of Life.

More sparkle...more light...more love.

Once again, I thank my teacher...

or should I call him my bridge, my crossing, my light at the end of the tunnel.

Whatever the metaphor, in this month of celebrating people with Down Syndrome, 

tonight I am profoundly grateful for my front row seat.

Come Home For Love

You've probably figured this out by now...but, I'm a writer-downer.

Like a photographer, I love to memorize the moment but I use words instead.

I try to freeze the frame.

Save the scent.

Hold the moment close...because whooooosh --

it's gone.

This week-end, I couldn't write it down.

It was too magical.

Too indelible.

Too important.

My journal lay empty...like a neglected best friend I couldn't even look at it.

I had to tuck it away.

I have no time for you, little book...only her.

This week-end I got to spend with just my big girl, away at her college, submerged in her world, if only for a moment.

I loved every second!

I felt a bit like a runaway as I kissed my little guys good-bye and relied on the kindess of my sister to watch them after school and the awesomeness of my husband to hang with them all week-end as I boarded a plane.

I tried to mix in with the business travelers...

can you say rookie?

It was obvious I didn't have practice at this...but who cares?

I checked into an adorable little hotel right near campus and texted my love bug.

She was done with class for the day and so I set about running errands and crossing off things on the to-do list with her...

step 1: cut the kryptonite lock on her bike since her key was lost

step 2: get a new bike lock

step 3: get ready for dinner at her sorority

step 4: relax with the girlie :)

We found a super nice locksmith who after a few key questions decided we weren't criminals and was willing to break the bike free.

We meandered and found a bike store and found our lock.

We hung out in her dorm room, meeting people from her floor and listening to the various options for Friday night fun in Eugene...turns out there's quite a few.

We had dinner at her house and got the official tour.

Her sorority house has a laundry-chute and sleeping porches and a real house mom who is way older than me named Char.  

Such a dear, dear lady -- oh the stories she could tell!

And then, in a blink, it was all over and Mary Kate had places to go and I needed to get cozy with my book and I planned to meet her in the morning for (of all things) Zumba!

We had plans to meet in front of the recreation center on campus at 10am.  I show up a few minutes early since I'm not at all sure how Zumba works and was hoping for a cheat sheet.

No one was there.

Doors locked.

Zumba on hold.

Turns out that the rec center is pretty much as slow to open on a Saturday morning as the early morning work out crew is.

These are college students after all and weekends are sleep-in zones.

At 10:05am, a million sorority chicks with their moms show up and here comes my girl too.

We head into this amazing place for exercise and fun and we meet the most adorable Zumba teacher in the world.  She teaches us some steps and holds our hand but mostly she gets us going...

dancing and living the words of these Top 40 songs.

Getting older, I've noticed I'm way more sentimental...does this happen to you?

Seeing all of these girls in their work out gear, their pony tails, their bright shiny smiles standing next to their moms tears sprang to my eyes.

Watching this giant group dance and bounce and move to music made me so teary-eyed I had to go into full 

talk-myself-off-the-ledge mode:

You can do this, Beth.

Stop it.

Mary Kate will not understand why you're crying.

Stop it.

Get it under control.

Dance...enjoy this...hold it close...this is one of a kind.

And so I let that music right into my body.

There were at least 100 other people dancing and moving so I didn't mind if my moves were a bit off.

I danced for all of the moms who aren't healthy enough to dance.

I bounced for all of the daughters who couldn't be there.

I thought of the many many mothers who wished they could dance with their daughters and because of a poisonous relationship or a trauma or a distance they just couldn't.

I thought of my friends without daughters...

and my friends without moms.

While I danced I cried.

And sang.

And rocked it out.

I sent out into the universe praise and love for the moms who were working so hard to be a part of this with their daughters.

I hoped their daughters noticed.

I admired the uber-fit moms but knew I wasn't part of their tribe.

I thanked my body for every single step.

I cajoled my heart...and vowed to be more cardiovascular focused in my exercise routines.

But mostly, I couldn't stop smiling...

watching this daughter of mine dancing and singing and getting down with her bad self.

I thought of the many times she danced around our house, singing it out all in the shower...the Top 40 hits blasting from out of her room and in my car when she was home.

How did it go so fast??

The tears of time passing and recognizing just how brief this all is also came to visit.

Deep breaths, Beth.

Time is up, Beth.

Slow clap it in...you made it though Zumba!

After Zumba and a delicious breakfast we ran to the mall, got some printer ink, and went to a drug store for those essential items that no student wants to spend their precious money on.

After that, it was more hanging out in the dorm.

Full fly-on-the-wall status.

It was so comfy listening to these girls talk and tease and make plans...plans for that night and plans for the next quarter and even plans for next year...all in the space of an hour or two.

So many plans...so much to do...so many dreams to chase.

I could have hung around all night...

but they had plans and people to meet and moments to squeeze tight.

Just like that it was time to head home...kiss good-bye...remind myself that it will only be a few more weeks until she's home, dancing under my roof one more time.

In Eugene, I found a cloth bag with the graphic that's on the top of this page.

It stopped me in my tracks:

"See the world, come home for LOVE."

Yep, that's your job, Mary Kate.

Get out there and see the world.

You're doing an awesome job of just that...

but please remember the second half:

Come home for LOVE.

Love is always here.

Always waiting.

Missing you and loving you.

And so very proud of the adventure you're living.

Carpe Diem, Baby Girl.