Truth or Dare

"The great enemy of the truth is very often not the lie, deliberate, contrived or dishonest, but the myth, persistent, persuasive and unrealistic."  

-- John F. Kennedy

Tell me the truth...

stop and really consider it.

How do you feel about Down Syndrome?

Does it gross you out?

Frighten you?

Disgust you?

Make you uncomfortable?

Why??

Time for a little truth telling.

I'm gonna keep it real and hope you last until the end.

Do you dare?

Down Syndrome is not frightening.

It's not the problem.

It most certainly does not warrant the death penalty or loss of life in utero.

The problem is the pervasive and concrete-like myths that persist.

Time for a little jack-hammering.

Myth #1:  "They are so happy."

Ummm....not so much.  Patrick has the full deli counter assortment of emotions: anger, loneliness, joy, confusion, sadness, happiness, calm serenity, extreme excitement, embarrassment, love.

Yes, what ticks him off is not what ticks you off...but isn't that true of your other friends and family?

He does not sit around in a perpetual dumb happiness every day -- in fact, that whole idea is just plain silly.

Myth #2: "They are stubborn."

People with Down Syndrome are under a microscope.  

Like it or not, they are held to higher standards behavior-wise than the typical population.

Imagine a line full of kids.

Imagine all of them pushing, poking, and acting unruly.

Who gets nailed almost every time??

Yep, the kid with DS.

He (or she) is easy to spot...I get it...but it's a bummer.

Being "stubborn" could also be called being persistent, having perseverance, demonstrating grit (the hip word in parenting if you haven't gotten the memo)...but almost always, in reference to children with Down Syndrome it is labeled "being stubborn".

I don't buy it.

Myth #3: "Children with Down Syndrome are a burden."

Honestly, this is the one that really prevents children with DS from living a full life.

Children (Down Syndrome or not) are NOT a burden.

Every single child on our big blue marble is a remarkable, stunning, one-of-a-kind gift to all of us.

They are gems...rare and beautiful.

How is that burdensome??

Is there more work involved with a child with Down Syndrome??

Yes.

Does that make it not worthwhile??

Don't you have to dig deep (and hard) for diamonds??

Aren't our kids more precious than diamonds??

If I could crush this myth into diamond dust I would...because this is the vortex of all prejudice.

If people consider you a burden, then you don't get equal access.

Heck, you don't really deserve to live.

If you are trouble, people avoid hanging out with you.

If you are difficult, well then, it's easy to leave you out, exclude you and close doors of opportunity.

Today, this very day, I spoke to two different moms about their children with Down Syndrome and their education.  Both of them are fighting for the chance to have their child fully included in the typical classroom.  One is in second grade, the other in fifth.  One lives in Florida, the other in California.

Honest, gut-level truth right now: their child is not the only struggling student in their class.

Their child could very well be a better reader and yes, a better student, than another child in that class.

Their child is the one singled out.

The one that needs to prove their worthiness to even get access to the regular room.

Why??

Because of the pervasive prejudice that continues to this very day.

Here's my truth and I've been a mom to someone with Down Syndrome for 14 years...

so, I'm not Polly-anna, crazy-in-love, rose-colored glasses girl...

just a mom who lives with her gem everyday.

This is my truth.

I don't notice Down Syndrome in my child.

I notice Patrick.

I can see him, his whole beautiful self, clearly.

That is the blessing of loving someone.

I don't believe any myths now about anybody.

Because the myths that people tell me about Down Syndrome are so far off the mark that it's offensive.

My heart got bigger when Patrick was born.

My citizenship with the world was not only renewed it caught fire.

I see myself in every mother...

the one who forgets her child in a car...

the one who doesn't have enough food in the fridge...

the one who can't figure out which end is up and is so clouded in judgement she believes not living is an option.

My truth is clear.

But I wonder about the others...

who will share their truth??

Who will dare to consciously, mindfully crush to dust these pervasive, destructive myths.

Only with truth can freedom ring.

Just a brother with two sisters: truth.

From Here to There

"Skipping is oxygen for the soul." -- Jessi Lane Adams

If you hang around young children, you get to see them skip...from Point A to Point B, skipping is most definitely the preferred mode of locomotion.  

Children can't seem to help it.  

The joy in having these amazing bodies, the zest for living each and every day in this land of wonder and amazement, the natural predilection for fun no.matter.what requires skipping.

The young child is proud of himself.  

It's quite an accomplishment to maneuver that body up and down in a dancing sort of way.  

Smiles just must accompany the movement.

But up around age 7, kids start to notice that adults aren't skipping much.

These readers, writers, monkey bar enthusiasts can't help but slow it down.  It's unintentional, of course, growing up always is...but the average 7 year old doesn't skip as often as her kindergarten friends...except on the soccer field, it seems.

Maybe it's the wide open grass, 

or the companionship of friends, 

or just the joy of a Saturday of exercise and cheering and fun --

I don't really know what triggers it but the skipping just happens.

I cherish the skip onto the playing field...because I know it won't last long.

This bridge from young child to older child isn't a long one and the skipping seems to slow way down as they move across it.

I mentioned it today as I watched my baby girl skip out onto the field after a quarter of rest.

I said out loud, "I love the skipping," to a mom next to me.

Her one and only child was right next to mine on the field.

She paused as if noticing it for the first time.

"I know," she said.  "They love to skip."

Her daughter's in third grade...that much farther across the bridge. I mentioned that it wouldn't last long.  That skipping was a territory in the Young Child Kingdom and that the Older Child Realm wasn't too partial to that form of movement.

As if seeing it for the first time, she pointed out the others.

Three kids from the other team skipped in a staggered line onto the field.

Another one of our little team-mates from the Blue Lightning skipped her way onto midfield.

On the field, impatient to get kicking, little girls couldn't help it...their bodies were dancing and wiggling and giggling and joy-filled.

This tiny window of time is so precious.

And such a reminder.

Our bodies are pretty damn awesome.

Why don't we skip more?

Can you imagine Obama and the rest skipping around D.C.??

Yeah, me neither.

Why??

They have sucked the joy right out of that town.

How about those poor people in Syria?

How about Putin?

Skipping is free.

It takes no equipment.

You don't need to be fluent in a language, literate or know any rules to the game.

You can do it anywhere -- although wide open spaces do actually beg for it.

So why aren't we doing it??

Because we're all a little weighted down.

You need to have a light heart, a real ability to live in the moment and a sense of joy.

Young children carry those things in their back pocket.

Adults, not so much.

So, today I'm grateful for the skipping.

Grateful to the young children who do it on a daily basis.

Grateful to be reminded that I have a healthy body, a joyful life and the chance to skip.

You'll find me skipping around the block and if I'm really brave, I won't even have a kid next to me.

Why not?

I could use the joy, the lift and the fun.

Who's with me??

Eighties Ladies

"When grace is joined with wrinkles, it is adorable.  

There is an unspeakable dawn in happy old age."  -- Victor Hugo

Every September, we celebrate my mother-in-law's birthday.  Like Easter or Thanksgiving or Christmas, it's a required once a year family celebration...except that for the last few years it hasn't really happened with very much flair, if at all.  

Before that, when our kids were younger, we'd go down and make a week-end out of it...swimming and sunning and being leisurely with grandbabies.  We must have looked like a micro-version of the Kennedy's on Martha's Vineyard.  

But like all good traditions, kids got bigger and school and sports and the busy-ness of life happened and before we knew it, late September blended into early October and the celebrations got smaller and smaller.

That is, until this year.

This year, Suzie would be 80 and a party was necessary.

I was informed that we would be hosting it at our house...

the week-end before Mary Kate left for college...and the party would not just be the tiny little family affair of days gone by.

Nope, this one was going to be a PARTY with a capital P, 

well actually more like a real authentic Mexican Fiesta.

(Can you say: ai, yi,yi,yi??)

Formal invitations

White table cloths

Flowers

Mariachi Music

The Whole Shebang

Can you say: please, pretty please, no?

Can you say: don't wanna?

Can you say bad attitude?

That's me, over here.

It was bad timing.

It was a royal pain.

It filled me with dread.

And it was the exact opposite of how I wanted to spend my last week-end with Mary Kate,

but...

it was awesome.

There were gobs of Ladies in their Eighties.

Plenty of gents too.

They had their children give them rides.

Virtually all of them needed some sort of help walking.

But they were dressed up and they were ready to party.

They showed up on time, early even.

Quite a departure from the events I host where being a half hour late is the norm.

The party started at 3pm.

The entire group was here by 2:50!

I was dying.

I had to wear a Mexican dress...

grumbling about hell freezing over I did...

turns out those things are comfy. :)

Mary Kate and I rocking that fiesta look -- olé!

The guest of honor arrived by limo -- I told you this was big time.

And the friends of old arrived soon after.

They were polite.

They were delighted.

They were tickled.

It was awesome.

Watching them catch up on forty or fifty years of history was crazy.

Hearing tiny snippets of their life stories stopped me cold.

There was Faye who was married only three months before she had to say good-bye to her husband who went to India for the war for two years.

After he came home, they moved from San Francisco to Butte City (talk about polar opposites!)

and proceeded to keep house for not just her husband and herself but for his two brothers too.

For FOUR years!!

Yep, Faye played surrogate mom to two eligible bachelors for four years 

(can you imagine the reality show version?)

no complaining, 

no irritation,

she just did it...cause that's how it was done.

Of course, she did get her own sweet reward: 

she had a bit of an influence over who those brothers would marry.

Today, all three of the brothers have passed away.

But Faye came to the party with her sisters-in-law, Teresa and Maureen.

It was non-stop adorable.

There were couples there who were literal extensions of each other's limbs.

Together, they climbed the steps.

Together, they navigated the difficulties of the lawn turning into cement and chairs being too close together  and the dexterity required to maneuver to visit someone in the distance.

These guests were gracious, interesting, charming and fun.

They were touched to be invited.

They were the kind of people who still enjoyed life at 80 or 85 or 90.

I want to be rocking a Mexican dress at my 80th birthday too!

And it made me ashamed at how few parties in their honor we have.

I celebrate my children's birthdays in a big way.

But this was my first big party for the generation above me -- 

well, except for an anniversary party or two.

That's just not right.

These people deserve to be celebrated.

We need to honor them and cherish them and bring them out into the sunshine.

They need a big ole fiesta.

They have a lot to celebrate.

And a whole lot to teach us...

if only we would take the time to listen.

I'm grateful that the universe forced my hand.

I'm grateful to the children who drove.

Grateful to my darling sister-in-law and brother-in-law who came to help early and stayed late to clean up...and brought Mexican dresses and Gerbera daisies and delicious cupcakes.

Mostly, I'm grateful to the ladies in their eighties who showed me how to live.

It was awesome -- thank you!

Get Out of the Way

"Every tomorrow has two handles.  

We can take hold of it with the handle of anxiety 

or the handle of faith."  

--Henry Ward Beecher

I've been noticing something.

Kids are anxious.

They have anxiety.

They stress out.

They freak out.

They get overwhelmed and they shut down.

For me, it seems like it's going on a lot more than it used to.

Today was the topper.

I've heard of kids being anxious...but I sat with a student teacher as she went through her class and she revealed that four of her students struggled with anxiety...and they were in elementary school!

Four in a class of thirty.

What's going on in our world??

These kids aren't hungry or homeless.

Their basic needs are met.

They have involved parents...maybe even a bit too involved.

Maybe that's the problem.

The hovering has got to stop.

Some parents actually come to school every day and eat lunch with their child.

They lurk around at recess.

I'm sorry but that would give me anxiety and I'm an adult.

WTH??

Our world is so upside down that the school hasn't stopped that madness.

The classroom teacher hasn't called an intervention a meeting and clarified the problem.

The parents keep eating lunch...and if they're eating lunch at school with their kids I don't want to think about what it's like to be at home together.

Suffocating is the word that comes to mind.

Let's chat about the message you send your kid every day you show up to school to eat lunch with him:

You can't do this without me.

You need me.

I'm crucial to your happiness.

I don't believe you can navigate this big, bad world on your own.

It's just a little too close to the mean mom in Rapunzel for my liking.

Why do we have this level of hovering??

Because the parents have lost their faith in our world.

Because of the horrendous living nightmare of 20 tiny first graders dying in their school in 

Newtown, Connecticut.

Because of 9/11 and creepy bad things that happen in our world every day.

I get it.

Bad stuff goes down to kids on a regular basis.

But guess what???

A whole lot of good stuff goes down too.

And my gut tells me it's WAY more than the bad.

We have lunch ladies, crossing guards, bus drivers, school secretaries, guitar playing music teachers, ball bouncing PE teachers, school janitors, principals, teachers and teachers aides and after school specialists just waiting to do their part.

And they DO their part.

Every single day.

Schools are safe.

Schools care.

Schools are a real place that your child can learn to maneuver and ask questions and be curious and test the waters and grow in independence every day.

But we have to let them.

We have to tell our kids by our actions that we know they can do it.

We have to give them a chance to fail.

And point out the rising sun and and the world still spinning when the failure happens.

It's ok.

They need to know they are ok on their own.

They need to have a little faith and see it all work out.

Over and over.

School's the place where that happens.

So...can you parents just take a deep breath and get out of the way??

You are literally making your kids sick.

You are disabling them.

Besides, you are just sucking the fun out of the whole thing.

And you don't want to be a fun-sucker, do you??

Tonight I'm grateful for the safety net of schools.  

I'm grateful for the many, many good people who make a school run smoothly.

I'm grateful for the welcoming smile, the hot lunches, the predictability of schedules and the comfort of belonging that comes with being in a school. 

Let's grab the handle of faith and let tomorrow shine.

Happy Underwear

"Think big thoughts but relish small pleasures."

-- H. Jackson Browne

I'm going to share a little secret.  

In fact, it's so good, I kind of want to make my own line of it, trademark it, sell it at Target and make every woman's day. 

Ready??

How do you start your day?

I have one guaranteed, sure-fire, way to make your very first moments of the day good ones.

Happy underwear.

No, I'm not joking.

Don't make fun.

Give it a try.

Get an "A" for effort -- go out and find yourself some happy underwear.

Now, I'm not talking sexy underwear.

Although I think we can make the argument that happy can be sexy.

I'm talking underwear that is comfy, perfectly yours and super cute.

When you see those undies in your drawer, you smile.

When you see them in your laundry basket, you can't help it...you just have to fold them up and tuck them away for that great day called tomorrow.

Trust me, 

when you put on happy underwear, 

you can't help it...you get happy.

I just went out and found some more happy underwear...heck, if the kids get new school shoes, the least we can do for ourselves is to find a few new pair of cute, comfy undies.

They weren't expensive.

No, I didn't find mine at Victoria's Secret...although I won't judge you if that's your spot.

I just want every woman to have some happy undies.

Your spouse will thank me.

Your kids will thank me.

Why should the toddlers have all the fun?

It's a simple pleasure and one that can really make a big difference.

If you put on something that makes you feel like a frump, well, then, I guess you give off that frump vibe and you feel like a frump all day long. 

It doesn't even matter how cute that outfit is.  

I can do simple arithmetic.

Frumpy undies + cute outfit = zero.

And, if you're really sad, well, that's OK, stick with some sad undies for awhile...

but, just so you know, there's no downside to happy undies.

I've been on the happy undie bandwagon for years -- decades even.

Life is way too short to have boring undies.

Toss out the utilitarian neutral-colored blah guys.

Anything with snags, (God forbid) holes, extra strings or bad spots must go.

Go ahead.  

Find the time.

 Get some happy underwear and have yourself a great day.

Even you ladies sporting a burqa...bust out for the happy undies.

You can thank me later. :)

Finding Each Other

"When it is dark enough, you can see the stars." 

-- Ralph Waldo Emerson

America doesn't do grief.  

Americans are downright wimpy when it comes to facing loss head on.  

We want the path to be easy, the bumps to be light and we cringe when we have to go to the bad place of real loss.

When my friend lost her mother in her twenties, her young husband asked, 

"Just how long do you think it will be until you are over it?"

She wanted to punch him.  

But instead she looked him straight in the eye and let him know the truth:

"I'm never going to be over it.  I'm forever going to have this hole.  I am going to be different."

I'm pretty sure he didn't want to hear this because that's how Americans are.

We want a fast food method to grieving.

Let's get this over with.

Let's move on.

Let's pretend it never really happened.

This intent to gloss over the pain of loss is so classically American and so unnerving to deal with that rarely do we discuss it.

We shut it out.

We steel ourselves for the sad moment...the funeral, the hug, the up close shot of grief...and think we're done.

Thank God for the Irish.

My friend, Carolyne, lost her mother a month ago.

She travelled alone to Ireland to say good-bye and to grieve with her family and friends.

Out of necessity, she left her children here.

So it only made sense that Carolyne would observe the Irish tradition of the Month's Mind.

I got an invitation to it and thought to myself, "Alleluia!" 

I knew nothing of what a Month's Mind entailed but I did know enough to understand that it would be a way to share in Carolyne's grief, if even for a moment, and I wanted to be there.

I was grateful for the chance.

I had no idea.

The Month's Mind is basically a mass held in your home one month exactly after the person has passed away.  The fog of shock and the harboring clouds of the initial, deep sadness have had thirty days to clear out...some sense of clarity and a willingness to remember and honor and cherish the person are present.  

In essence, the person grieving can finally take a deep breath.

One month into it, the eyes of the heart have adjusted somewhat to the deep darkness of loss and some stars can be seen.

It's a beautiful time and a real gift.

We gathered for the Month's Mind at Carolyne's home.

All of us knew Carolyne from very disparate parts of her life and it was wonderful to see her house filling up with the people who loved her and wanted to remember with her.

Her children were there.

Her children's friends were there.

Their dining room table was made into an altar.

Their living room into a chapel.

It was intimate and close and a chance to see grief head on.

But it was also a chance to laugh and be light hearted and sing songs that wouldn't normally make it into a traditional mass.
There was darling Father Dan teasing about the supremacy of Kerry versus Carolyne's Galway.

There were You Tube videos of a famous Irish folk singer leading us in song.

There was a rendition from U2.

There was time for grandchildren to speak and Carolyne to speak and an opportunity to see pictures and get to know Carolyne's mom in a way I never did.

We said prayers and received blessings but mostly we were together.
We were together for the official Bailey's toast.
We were together as we rocked out to Hail Holy Queen from Sister Act.
And some were together long into the night singing at the piano with dear Father Bong.

We felt the love of family and friendship and together we knew that grief, although overwhelming, terrible and debilitating in its isolation was being shared right here, right now.

It was palpable and powerful.

At the end, Carolyne read a poem from the book Benedictus, a gift her dear brother Bobby had given her years before with the very page marked with this blessing.  

Beannacht

On the day when

The weight deadens

On your shoulders

 And you stumble,

May the clay dance

To balance you.

And when your eyes

Freeze behind

The grey window

And the ghost of loss

Gets into you,

May a flock of colours,

Indigo, red, green

And azure blue,

Come to awaken in you

A meadow of delight.

When the canvas frays

In the currach of thought

And a stain of ocean

Blackens beneath you,

May there come across the waters

A path of yellow moonlight

To bring you safely home.

May the nourishment of the earth be yours,

May the clarity of light be yours,

May the fluency of the ocean be yours,

May the protection of the ancestors be yours.

And may a slow

wind work these words

Of love around you,

An invisible cloak

To mind your life.
 -- John O'Donohue 

In that moment, cloaked in John O'Donohue's words, our group found each other.

Strangers held hands and prayed.

Tears were shared.

Remembrance was thick.

It was a sacred moment.

A clock stopped.

Later that night, as Carolyne and I and a few others were talking, Carolyne took an astonished breath. 

Her clock on her book shelf had stopped at the exact moment of her mother's passing.

The clock would stay forever at 5:15...reminding and tending and holding us close...time is relational and fleeting...time does stand still...in sacred moments...in holy places...where love is a cloak.

Grief can be beautiful...Carolyne taught me that.

Tonight I'm grateful for friends, for the hard times and for the moments that bind us.

Maybe us Americans can be a little more Irish.

It Happened!

"We all have our own life to pursue, 

our own kind of dream to be weaving...

And we all have the power to make wishes come true, 

as long as we keep believing."  

--Louisa May Alcott

Last Friday, after years and years of trying, five different bicycle camps, three different bicycles and a whole lot of wondering if it ever would happen...Patrick rode a bike.

He didn't just ride it for a short distance. He's been able to do that for awhile.  

He rode it for three miles...out on a green belt, to a duck pond and back.

He came home sweaty and wiped out...but he came back a bike rider.

Hot and sweaty...still needs to get home...but a bike rider none-the-less.

In his mind, during that ride, he made the leap.

He jumped over the mental hurdle.

He now believes he is a bike rider.

He feels it.  He knows it.

He freakin' did it!

When he rode up to our house,  I ran out the front door clapping and cheering and crying like the guy had just won MVP at the Superbowl and we were going to Disneyland.

I was jumping, hugging him, holding him by the shoulders and telling him so loud 

and so over-the-top how proud I was that he had done it.

He got that small, shy smile that they all get.

You know the one.

The smile is one part: 

"Hell yes. I know. I did it.  I'm awesome."

another part: "Still trying to wrap my head around it...hey, wait, I did it."

mixed in with a smidge of "It's really no big deal, don't know why you're freaking out."

He got embarrassed that I was making such a big deal about it.

Our neighbor who is Mr. Gruff, Let-Me-Ignore-Those-Crazies-Next-Door, actually walked across the street 

and shook Patrick's hand.

I swear that Patrick can thaw even the coldest of hearts.

It was another awesome cherry on an already huge sundae.

Sarah, Patrick's amazing aide and personal friend to all of us Forakers, was the one who helped seal the bike riding deal.

You see, when you're 14 and you know your mom wants you to really do something, you can't help it, you push back.  

It's just in your teen-age DNA to refuse.

So, I couldn't be a part of it.at all.

Even though I really wanted to in my interfering-mom-knows-best way.

I had to hand it off, like the proverbial baton at the Olympic trials, and let her run.

The chick knows how to motivate.

She used every tactic available.

Donuts, music, cheerleading, videoing, deal-making...but mostly, her own belief that he could and would do it.

Day after day throughout the summer they practiced.

Day one was rough.

He couldn't get his balance.

He couldn't fit the bike.

He didn't believe he could do it...and so he didn't.

But, like the faithful friend she is, she just kept at it.

Kept encouraging.

Kept nudging.

Kept pushing...farther and farther.

Before we knew it, he started making the mental shift.

He started telling her that he could go further.

He started showing off.

She could no longer run beside him...she needed a bike too.

And that was the day they just rode and rode -- all the way out to that duck pond.

Yesterday, Patrick in the early morning suggested that we ride our bikes to school.

I smiled.

How do I say no to that?

He's still wobbly on the take off.

He still needs waaaaaay more practice with riding on the street and navigating traffic and other distractions...but he can do it.

Now all he needs are just hours under the belt.

Because now he believes.

He is a bike rider.

And we all know that being a bike rider is way more than having a new way of getting from Point A to Point B.  

Patrick got a little more freedom last Friday.

He got a ticket to expanding his world.

Just like the gift of learning to read, riding a bike affords him a little more independence and a whole new way of seeing the world.

I've been steeped in a full, grateful heart all week.

What can you say to someone who helped your child in such a profound way?

What can you give them to show your appreciation??

I gave her the only thing I had to give: my tears and my full heart.

I looked her in the eyes and told her that the day her first child rides a bike, maybe, just maybe, she will understand what she has helped to give Patrick.

But for now, all I can do is surround her with my love and appreciation every single time I go for a ride with Patrick.

I live in a bike riding town.  

You can bet that I'll be riding with Patrick all over the place...

each time I will send some sunshine Sarah's way -- she'll feel it.

I know it.

So today I'm grateful for two blessings: Patrick's own determination and ability to just keep trying...

no matter how many times it didn't work.

And I'm grateful for Sarah's enthusiasm, her coaching, and her perseverance through some 

hot, tiring days that looked awfully bleak.

Together they made it happen.

Unbelievable what friendship, faith and determination can do.

They make quite a team.