Sunday, December 15, 2013

365 More

"525,600 minutes, 525,600 moments so dear.  
525,600 minutes.  
How do you measure? Measure a year? 
In daylights, in sunsets, in midnights, in cups of coffee. 
In inches, in miles, in laughter, in strife.

In 525,600 minutes -- how do you measure a year in the life?  How about love?  
How about love?  How about love? Love.  
Measure in love.  Seasons of love." 
-- "Seasons of Love" from Rent (the musical)

I've had her for three hundred and sixty five more days.
An entire extra year.
Hundreds of thousands of minutes, countless moments, dozens of books and a myriad of chances to squeeze tighter, hold closer, give second chances and measure in love.

Today, of all days, it happened to be her First Reconciliation.
The irony of talking about sin and transgressions with someone who still believes in Santa and carefully writes notes to the Tooth Fairy and still sleeps with a multitude of stuffed of animals is not lost on me.
She knows about making good choices.  She knows how to be kind and thoughtful.
She does it pretty much every day.
I'm not too worried about her spiritual health.  
She's closer to God than almost anyone I know.
And yet, this is when our church says she's ready...and on this terrible anniversary of losing 20 six year olds, 
a whole bunch of seven year olds made another step forward.

In the glow of candles, amid family and friends, they spread out among four different priests and went up there and asked for forgiveness.

So much lighter now!
Caroline was worried about this whole process and so her teacher helped her out.  She asked her to hold a book.  Then she piled another one on top, and another, and another -- until she was holding five heavy books.  She told Caroline that when you do something wrong, it feels heavy and weighs you down. Then she swooped in and removed all the books.  She told her that she would feel so much lighter after Reconciliation. 


As we walked up to church, Caroline wondered aloud if she would "feel lighter".  She couldn't wait to find out.
She wasn't fearful.  She wasn't anxious.
She was curious.


Afterward, she sighed and said, "I'm so much lighter!"

I smiled...that lucky smile.
The smile of a momma who had someone else give their child a gift.
Someone else had given her another way to see the world.
I was so so grateful.


Walking home, I tried to hold her hand but she was skipping ahead.
My heart is always lifted when she skips...but then it remembered the twenty who no longer skip...and the many, many heavy hearts surrounding those twenty.

My heart always holds those twenty close.
I can't look at Caroline and not see them.

At her birthday, I thought of the quiet homes with no extra candle to add.
When she lost another tooth; got bolder swimming; started voraciously reading.
All of the days she spent singing, dancing, creating, laughing and telling knock knock jokes.


Six moving to seven -- 525,600 extra minutes.


What did I do with those precious extra?
How did I spend them?
Sadly and beautifully, we just went about our days...taking hikes, trying new things, making new pictures,
learning and wondering and asking and celebrating...
nothing too special...

until it's gone.

So, Newtown, Connecticut and most especially the families who have not had that extra,
I want you to know that your insane, mind-numbing loss is not forgotten.

You are alongside us on our journey now...forever.

We are lighting candles,
remembering
and choosing love every chance we get.

Friday, December 13, 2013

The Map

"There is something beautiful about all scars of whatever nature.  
A scar means the hurt is over, the wound is closed and healed -- done with."  
-- Harry Crews

I don't often see Patrick without his shirt on.  He's 14 years old and into privacy.  He takes his own shower, figures out his own clothes, always remembers his deodorant and out of my three children that can maneuver through this process on their own, he is the only one who routinely hangs his towel up.

So, it was with some surprise that I walked in on him looking at himself in the mirror, touching a rough spot on his chest, analyzing it and thinking about it.  At 14, like almost all the others, he cares about what he looks like.  He wants his hair to be cool.  
He loves to dress up with a tie and jacket.  
This stuff matters.

I could see him feeling his skin like a blind person reading Braille.  He wanted to know the story behind the scar.  
He didn't remember receiving it. But, I did.
The scar looks like a hashtag that might appear on Instagram.  It's faded but rough to the touch.
I touched it too...and like some sort of portal, I traveled back in time.

There on the center of his chest, right next to his breastbone was the entrance to what once held a Broviac. A Broviac (for the lucky people who have never needed to know that word) is a way of giving chemo directly into your body.  It also happens to be a way to take out blood as well.  Pediatric oncologists often suggest it as the best option for young children with cancer because of that blood-taking option -- fewer sticks with a needle then.  
But from my viewpoint, I'd tell anyone to go for option two...the port-a-cath.

John and I affectionately called the Broviac, the "X-files thingy" -- truly a scientific medical term if there ever was one.  The Broviac was a tube that hung out of your chest.  It required a tape over it and a netting to be worn like a vest over the entire chest so that it would not get pulled out.  It was next to impossible to bathe in.  It was hell to clean, not to mention life-threatening if we didn't clean it right.  At the end of each week, we needed to push Heparin into the Broviac and clean the area around it.  
There Patrick would sit, the most stoic three year old on the planet, letting us clean raw skin and push medicine.

All that is left of that awful, horrible time is the hashtag scar.

Tonight, I told him the story of his bravery and his poise.  I admitted that while I was afraid of it, he was not. 
He looked at me in a shy, proud way...

and he asked about the next scar.

This one was a three inch horizontal line about three inches down from his left hand collarbone.
That was where the Port-a-cath was placed.
After the x-files thingy came out...which was a Defcon 10 on my fear list, they casually replaced it with this.  This beautiful invention goes under the skin.  It's about the size of a fifty cent piece, circular, and attaches to a vein.  It has a sponge-y center where the medicine goes in.  You numb the area and then push the meds/chemo when needed.  But since it is under the skin and nothing needs cleaning, once the meds are done, you're done.  Free to go and live your life.  Go swimming -- no problem.  Take a bath -- a breeze.  Play in a water slide -- fine by me!  It was a miraculous transformation.  Patrick was four when he got the port-a-cath placed and we were a new family.
They "accessed the port" (don't we sound like we're in Star Wars?) whenever he had a chemo treatment, which was about once a month.  
Patrick was so zen and unafraid about the accessing that other children who were fearful would watch Patrick and see how easy it could be. 

He was fearless at four.
Pretty stunning way to live.
That scar tells that story and Patrick heard it tonight.

He asked if he had any other scars and I pointed out the tiny one on his neck.  It was part of the Broviac nightmare and truly I blocked it out.  I just embellished the other Broviac story and told him he was ready for his shower now...

except then I had to take my index finger and smooth his open heart surgery scar that runs right down the middle of his chest a good eight inches long and thick.  Like I had a bubble of glue under a paper craft, I smoothed that skin, petted that scar and reminded him of that amazing badge of courage.

That scar is hard to miss.  He knows that story so I mostly skimmed over it, like a favorite fairy tale.  
I could give the Cliff Note version.

He asked to see my scars.
I have only two.
One from a hernia operation when I was two -- a whisker thin three inch scar way down low on my tummy -- and one on my finger -- a Girl Scout camping accident with a sharp tin can.  
My stories show no bravery.  No zen-like calm.  No resilience.  No grace.

Like ports of call on a map, Patrick heard his story.  
The hero stood down a foe.  He maintained his cool.  
He bounced back from mortal adversaries and held his own.  
Mostly, he did it with effortless grace, good humor and kindness, fearlessly.

What's a little hashtag scar or two when you've done all that?

You're made of powerful stuff my boy.
I'm glad you finally heard it all out loud.

After all that horror, fear and dizzying sadness all that's left are the scars...and the stories.
They're both pretty beautiful now.

Sunday, December 1, 2013

Keep Me In Your Heart For Awhile

"One of the most beautiful qualities of true friendship 
is to understand and to be understood."  
-- Lucius Anneaus Seneca

When you have a baby born with a disability, you enter a different world.  
I like to think of it as a parallel universe.

The outside world audibly gasps.  
There is the smog of pity that envelopes you and makes it difficult to breathe.
There are the many, many people who carefully, tenderly, kindly give you the "I'm so sorry," look or even utter those poisonous words out loud.

I want to scream, "Sorry for what?" 
Sorry for this perfect snuggly bundle?
This is the object of your sorrys???
I'd look down and it did not compute.

I was on the inside now.

Looking out at the world with this new view, it was as if I discovered the horizon line.
Everything made sense.
The things that the outside world cared about -- speed and intellect and perfection -- 
suddenly fell away like shingles off of an old roof.  
None of that mattered now.

What was essential, like Antoine de Saint-Exupery's famous quote, was invisible to the eye.
On the inside, I could only see with my heart.

Once your world is like this, you try to search for others.
Like some lost tribe that is scattered, they are hard to find.

In my town, not a single other child was born with Down Syndrome the year Patrick was born.
I could find no one locally.
So, in 1999, with the internet as an infant, I logged on and tried to find my tribe.
They were there.

There I found a discussion board and a way to meet other families with children with Down Syndrome. I could post a question and people would answer right away.
It was therapeutic and comforting and life-changing.  I no longer felt alone.
Within a few months, I found another board called ParentsPlace.  It doesn't exist any more -- some big company bought it out and changed the format -- but at the time it was my tribe.
I connected with families that had children close to Patrick's age.  Some lived in California but others lived across the United States, in Canada and even in Israel.  It was awesome!

As the years kept on, we would talk about meeting each other "in real life".  We called it an IRL.  
We dreamed of it, fantasized about it, idealized it and then reality forced our hand.
One of our own was sick, real sick.
Annette who had Ryan and lived in Canada had cancer.  Her diagnosis was grim.
Our friend Jan who lived in Indiana was willing to host anyone who could get to Indianapolis.  We would come out for the Buddy Walk in October and hope that Annette and family could make it too.
The year was 2007.
I had been communicating with these moms online since 2000, sending Christmas cards, cheering at the victories of their kids, praying through the difficulties but never had I met them in person.

I took Patrick out of school, convinced John to take time off of work to watch Caroline and deal with the bigger kids, and we went on an adventure to the middle of America.
I was nervous but so so excited.
I couldn't believe that I was going to meet Tara Marie and Emma Sage from New Jersey and Stephanie and Katie from New Jersey and Rhonda from Omaha and Nicole and Tarenne from Kentucky and Jan and Jeff and Nash from Noblesville, Indiana (and so many more!) 
IN PERSON.
It was a dream come true.
And a leap of faith.

I mean...who just jumps on a plane and plans to stay in a friend's house when you've never even talked to them on the phone??
Someone who has found their tribe.
For me, it made perfect sense...but for the outside world, not so much.

I will never forget getting out of my rental car with Patrick to meet Jan for the first time.
Her laugh and her, "You're so much taller in real life!" Meeting her sweet husband, Jeff, and their son Nash and then meeting so many others was so so beautiful.  I still get chills thinking about it.
And then there was the bittersweet reason, meeting Annette.

Nothing could hide the brutality that there was an urgency to our finally meeting.
There was no soft place to land.
I met Annette and her husband Tom and her son Ryan and their other son and no longer could use the distance as my shield.
Right here.  Right now.  This was happening.

For those of us on the inside, we know about the odds and life's little twists and turns.  We know that the hand can get crappy and you might not have any cards to play...but this was just plain cruel.
Life didn't make sense...but we somehow had to stop thinking about the future and live, really live, in the moment, in these few days we had together.

And live we did! 
Annette and I enjoying the day!
Annette was strong and happy and seizing the day.
How could we help it?

All of us had a comfort and a kismet that needed no words.
If our kids acted up or did something unusual, we all got it.  
It was a level of acceptance and friendship that was something I had never experienced before.

Partway through the walk Patrick refused to keep walking.  
Just quit.  
Any other place I would be mortified, cajoling, bribing,and otherwise working like crazy to get him to keep walking.  Here, another mom, offered me her stroller.  Patrick plopped in and Brig (one of the oldest kids with Down Syndrome in our group) pushed him.  Just like that, problem solved.

Thank you, Brig!

After the walk, we went back to Jan's.
We celebrated our children "with a little bit extra" -- the reason for our friendship -- and our hearts.
We talked into the night.  We played with the kids.
We gossiped and watched love bloom between Brig and Hannah (they are still going strong today!) and mostly felt the comfort of friendship, the cloak of acceptance, the fleece blanket of love.

It was a remarkable week-end.
One I will always cherish.
All thanks to Jan and the others who decided to make it real.

Just a few weeks later, we got word that Annette had passed away.

It felt so sudden and shocking.
We were breathless and bereft.
How??

Jan and Shannon offered to attend the funeral on our behalf.   They would speak for us.
Together they would show our love in person.
The outside world might not get it, but Tom would.

Six years later, my soul sister Tara Marie reminded me of that awful, beautiful time.
She toasted us tonight --
echoing the words of Warren Zevon's song, Keep Me In Your Heart For Awhile.

Annette, there is no doubt, you are in our hearts.
Always. And for more than awhile...forever.
We miss you.
We honor you.
We love you.

Most of all, I cherish the hours I got to spend with you...fleeting and fragile...
a reminder for how to live every day.
Minute by minute.
Smiling and full of life.

Tuesday, November 26, 2013

Nesting Part II



In the fall of 1992, I was pregnant with my first baby.  I went about my days teaching school to some 5th graders and coming home and painting, preparing and otherwise "nesting" in a big way.  That word was unknown to me at the time but I was feathering my nest just like a mother bird...anticipating, smiling, imagining and wondering.  It was a blissful time.  
It was impossible to picture -- us with a baby.

John would take the tiny outfits that we had been given and make the tiny legs walk with their hanger and speak in a  tiny voice..."Here I am!" he would say.
We'd giggle and try to picture us as parents.

Preparing for a baby when it seems that most of the world is preparing for another important birth is extremely special.  It felt like my universe made sense.  I could relate to Mary on the back of that donkey in a big way...and giving birth in a stable didn't seem so bad, better than on the side of the road!
I cherished the idea of a star pointing the way to that stable...loved the royal visitors...every part of the story seemed better for being pregnant too.

As we got the room ready, our hearts ready and our world ready we felt nervous and excited.
There was no way to know how it would all go but it didn't matter.  It felt joyous and right.

And on December 26th, 1992, we met our first born.  He came easily.  He was sleepy and snuggly and the very best bit of Christmas magic around.  We slid into parenthood and marveled.
Nothing can prepare you for the expansion of your heart or the experience of a whole new world.

And so yesterday, as I found myself cleaning and washing and imagining and picturing not just one child coming home from college but two, I couldn't help but smile.
The nesting, it seems, doesn't end.
Like everything, it morphs...
but there is a familiarity to it.

I went into Jack's room yesterday and got it ready.  I lingered over the pictures from high school, the photos, the memories and the feel of having him here.  I moved to Mary Kate's room, changed the sheets, smiled at the pictures and posters and primping supplies left behind in her safe haven.  

It felt a lot like getting ready for babies to be born...and in a way it was...my babies are most definitely in their college cocoon.  They are transforming and growing and changing and slowly being born into adulthood.

It's scary and sacred...just like the months before birth.

So, I guess I'm Nesting Part II.

Who knew that it continued?

Never got that tidbit of info.

But, it doesn't matter.  I'm smiling with anticipation.  I'm looking forward to seeing them both walk off their airplanes...ready to look deep into their eyes, hug them tight and drink them in...just like their real birth-days many moons ago.

Welcome Home sweet ones...we missed you!

Saturday, November 23, 2013

Dear Winters

"What we have done alone for ourselves dies with us; 
what we have done for others and the world remains immortal."  
--Albert Pike


You are so darling.  
You are a small community...connected and close.  
You have natural beauty and the authentic beauty of a community that cares.  You are special and rare.

Last Monday morning, your beautiful town was forever scarred.

You lost a citizen to murder, in broad daylight, going about her everyday routine of living in your town being a single mom.  Her boyfriend, filled with anger and hate, stole a life and created a shadow of darkness and fear.

I am so so sorry.  

Know that many are praying for you, sending their love and surrounding you in good thoughts.

In your grief you have a choice. 
You can choose love.

You have a chance to honor the person stolen from you.  You have a chance to remember her light and her beauty.  You can share her stories, her humor, her acts of kindness and her strength.  You can look this act of rage and anger straight in the face and recognize that these sorts of stories need outside support and greater acceptance.  You don't have to be ashamed if you are being mistreated or abused. 
When we stand with people at the margins, there are no margins. 
(Wish I could claim credit for that line but that is the wisdom of Father Greg Boyle who has seen more than his fair share of loss and murder working with the gangs of east LA.)

Or you can choose fear.
You can close yourself off from the outside world.  You can suspect the outsider and shut your heart off with judgment and criticism.  You can pretend it didn't happen.  Never speak of it again.  You can comfort yourself with the numbing idea that those sorts of stories only happen to other families and other people or that this was a one-time-only weird thing.

I hope you choose love.

I pray that with your broken hearts you can recognize the crack in others' hearts and see that we all need forgiveness, kindness and light.  I hope that as a town you can do something big that honors this woman and creates a safe haven for the many others that are just like her.

I hope that Winters becomes the ground-zero of bringing community compassion and care to a whole new level.  

I know you are that kind of place.

And I want to remind you of one of the laws of physics: the conservation of energy.
Energy doesn't just disappear.
It transforms.
Although Leslie's physical self is no longer here, her energy most certainly is.
It is surrounding you, transforming you -- moving and calming and guiding.
You can already see this in the way people are responding in this terrible moment.

Hold this knowledge close...let that be your comfort.
Hold each other close.
Choose love.
We are with you.every.step.of.the.way.


Sunday, November 10, 2013

The Wide Open Day


Don't think -- Just GO.

Today we had a wide open day...miraculous, really.
No obligations.
No soccer.
No birthday parties.
No chores that couldn't be avoided.
As Caroline would say, "No, must-dos."

So...what do you do with a wide open day?
So many times I fritter it away...cleaning a dirty bathroom, putzing about the house, wasting time on the computer or just letting time play its game of endless one minute and gone the next.

Because John had something fun he was doing with a friend, I decided I wanted to try a hike.
I decided this late in the day...after lounging and putzing.
I prodded the kids along and went to my favorite deli to get a picnic to go.

In my mind we were going to go on a hike...something that is not our normal but something I'm hoping to make a real part of our lives.

I found the name of a trail,
The Independence Trail.
How could we say no?
My life vest was that it was a completely accessible trail.  
The first wheelchair accessible wilderness trail in the United States -- and it was only 2 hours from my house.
If someone in a wheelchair could do this hike, we could too.

So, armed with some bottles of water, a yummy picnic and some willing participants I started driving.

We made it about halfway when Caroline piped up that she was hungry.
Patrick too.
So, using my GPS in my phone I found a random park in a random town.

Turns out it really was only a patch of a park.
It had a path, it had a creek and some pretty fall trees...but not for long.
It was pretty tiny.

And it looked like some homeless people thought it was their park.
Of course, I had two hungry kids, both on a mission, so they just walked right passed what can only be called the homeless encampment's brunch, with a look of determination.

I smiled awkwardly...feeling super self-conscious of my random kids in a random patch of green in a random town.  
It could have gotten weird.

And that's the thing with adventures, 
you find yourself in situations that don't have clear cut lines.  
Your known world doesn't really compare to this unknown one.  
You have to navigate the blurry lines, 
take your best guess and listen to your gut.
Sometimes it gets weird.

To me, the people seemed homeless and dirty but harmless -- I made my best guess.

We chose to sit downstream from them and have a picnic.
It was quiet and peaceful and that untended spot rewarded us with dancing leaves of every color falling into a tiny creek -- playing nature's version of hide and go seek.

We could have called it a day right then.
We could have been satisfied with a smaller outing and a taste of nature...
but it was a wide open day.

We didn't think too much about it...we just kept going...looking for Independence.

An hour later we found the trailhead -- those Internet directions were right after all!
It was clearly my lucky day.
Except well...Patrick had decided he'd had enough.
That picnic was about all he needed for time outdoors.
We could go ahead and hike but he would be staying in the car.

Time was not on our side.

I put on the table his choices...including his cell phone usage in the future...and still he stayed strong.
Finally, I had to pull out his favorite outing at Christmas. 
I told him he would not be attending that if he didn't find his way to the trail.
I let it sit there and then I turned my back and walked to the trail hand in hand with Caroline.
As the trailhead I started counting down from five and somehow, someway he began to run.
With a big smile on his face he started walking.
(A true Grace in the Ordinary moment, trust me.)

We had no idea where we were going or how long the trail went or what we were doing.
You have to make your peace with looking at the world and not knowing what's around the bend.


We just started walking...without any destination in mind.

Just because we could.
Just because it was a wide open day and the sun was shining and we were together and it felt right.

We found leaves that were beautiful.
We soaked in the quiet -- like dry sponges.
We sang songs and found walking sticks and noticed things.



Sometimes we hurried...curious to see what was next.



Hardly ever does this happen...but what they saw up ahead freaked them out...not in a bad way,
in a "No Way! This is Awesome way!"

Without trying, I got this shot of Caroline...
(Notice Patrick running in the background...the guy runs for no one.ever.  He was amazed!)

This amazing trail winds its way down to the river!
You can be in a wheelchair and find yourself able to get to the river, safely and easily.  
It's incredible!



I LOVE whoever had this vision, whoever created this place and the many people who must work hard to maintain it.
Thank you doesn't seem good enough.

Of course I had to go home and do a little homework.

John Olmstead, thank you for dreaming BIG.  Thank you for tirelessly and patiently working to get the property rights and the easements that allowed this trail to become this amazing spot. 
Thank you for finding a way to get to the river from up so high.

Thank you for your belief that ALL people deserve to enjoy the wilderness...really steep in nature...
not the sanitized way that so many people in wheelchairs are forced to do it...the messy, leaf-filled, acorn-strewn, golden hued path that you envisioned.
It really exists.

You did something really awesome.
You gave people who often have something holding them back a real gift of independence.
The Independence Trail lives up to its name.

I'm so grateful I had the chance to taste your bit of the world today.
It was delicious.
Every.bite.

"Climb the mountains and get their good tidings.  Nature's peace will flow into you as sunshine flows into trees.  The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn."
--John Muir

Sunday, November 3, 2013

You Don't Remember



When Patrick was in kindergarten, he was just completing all treatment for leukemia.  He had been on a steady stream of drugs and drug therapies for over three years.  His body, just turned six, could barely remember what it felt like to feel strong and healthy since over half of his life he lived with the effects of cruel chemotherapy. 

So, going to kindergarten was a big deal.  

He had virtually no stamina.  He got tired quickly physically...now add in what we were asking his brain to do.  We had placed him in a typical kindergarten with typical peers and crossed our fingers.

We knew the academics would be rigorous...but we also thought he could do it.

He thought he could do it too.  
He went about his days, learning to make the letters of the alphabet, learning to add, learning to come in from recess and learning to follow directions --  from all directions.
It was a huge task.

Every day I would toil with the uncertainty of it.
Were we asking too much of him?
Could he do it?
Could the school do it?
What did his peers think?
What did the other parents think?

I had no idea.

Then came the trip to the pumpkin patch about eight weeks into school.
It was obvious that Patrick was worn out...tuckered out.  
He asked me to hold him.

I cringed.

No one else was holding their kindergartener.
I wanted to say no...play the tough guy...but I couldn't do it.
I could see it in his eyes.
He needed a lift.

So...holding him, inner cringing, here comes a mom with her camera 
(long before the days of everyone having a camera in their phone)
and asks to take a picture.
Although I felt awkward, I was touched by her out reach.
I didn't know her name.  She wasn't a friend.  
She was just a mom on a field trip and
she didn't seem to care that I was holding Patrick.  
She didn't seem to mind that he was tuckered out while all the rest were climbing hay bales and scurrying around.  
She thought this moment was picture-worthy.

Now here's the crazy part.

Apparently, she didn't just think it was worth a casual photo-op.
A few days later...yes, back in the days of developing pictures at a store...I receive in Patrick's backpack a clear plastic picture frame with a little red bow and this picture:

My pumpkin.

I was stunned.
Who was this stranger?
Who takes the time to develop a photo of some random classmate, put it in the frame, decorate the frame and somehow get it to the person?

I honestly couldn't get over the thoughtfulness...still can't.
When I see this picture, that still is on Patrick's dresser, every time I get choked up.

It was the tiniest touch of grace and goodness...a simple message:

I accept you.
You deserve to be photographed.
You are part of our class.
You matter.

This was my rainbow after a storm of not-knowing.
This was my sign.
It was all going to be okay.

I know this mom has no idea the depths her act of kindness has traveled.
She very likely doesn't remember doing it.
She definitely doesn't think it's still hanging around some kids's dresser.

Isn't it funny what sticks around and makes it to the trophy case of our life and lands on the bookshelf or dresser or wall?  
I always want to know the stories of these pictures because I know they're good...just like this one.

I actually forgot about that picture until a few days ago.
When the very same person came up to me, nine years later, saying:
"I'm so excited about this picture Beth.  I got his real smile.  I got him with his little buddy carving their pumpkin at just the right moment.  I'll send it in an email."

Sure enough...

...those smiles came through an email.

And I thought about her act of kindness all those years ago.  
About the door she opened of acceptance and inclusion.  I thought about her -- always behind the scenes -- taking pictures, remembering, capturing and holding close precious moments that drip.drip.drip away every single day.

She has no idea the lift she gave me many years ago.
She has no idea the example she set for me.
Her welcome couldn't have been any more warm or sincere.

I guess it's about time I said thanks.
Thank you for your kindness, your generosity and your grace.
I'm still holding it close many years later.


Wednesday, October 23, 2013

Star Dust

"Babies are bits of star-dust blown from the hand of God."
 -- Larry Barretto

My friend Katie is pregnant with her first child.  She's about halfway along and so amazingly cute.
She's as ready as a new mommy could ever be.
She is deeply loved by her husband.  She is settled and confident and comfortable in her own skin.
She is a really terrific woman and I just know that her overflowing love, creativity, sense of fun and  joie de vivre is going to combine like some secret recipe into one heck of a mom.

But...I can feel her worrying.

I can sense her unease.

She's on the cusp of something big and she knows it...never wanted anything more.

And it's all out of her control.

I tried to help her know that the worrying doesn't help.at.all.

I tried to get her to see that "whether or not it is clear to you, the universe is unfolding as it should."
(Thank you, Desiderata...all time favorite life poem.)

I have so so much to tell her.

I want her to know that loving that baby full tilt IS enough.
It will be what gets you through the dark nights of sickness, worry, anxiety or confusion.

There's no wrong way to love your baby.

You can use the technique of "attachment parenting" and wear your baby 24/7 or you can snuggle that baby whenever it works or you can let your baby snooze by itself in a cradle.  
Your baby is still going to love you back...and here's a secret...she will love you back her way, 
not yours...which will be stunning and magical and exactly the way you need to be loved.

This baby will humble you and shock you and exhaust you and fill your heart to this cosmic depth that you didn't even know existed.

You will look back on things you have loved: a dog, a friend, a job that feeds your soul and truly look down from a mountain top the size of Everest and realize that you were merely playing in the sandbox of life until this moment.

You will laugh your butt off...at the hilarious things you consent to do for this child of yours, the way your body becomes a contortionist, at the absurdity of radical sleep deprivation and yes...

you will cry huge heaving sobs of vulnerability, compassion for all mothers, heartbreak for mothers who must say good-by way too early and those who may never know this bliss...you will cry for your child's journey, no matter how blessed, because we want zero adversity for the ones we love and that, my darling friend, just isn't possible in this difficult world we find ourselves in...
adversity potholes are everywhere.

You will cry in her tiny magnificence and cry in his towering manhood and cry through awkward adolescence and all the funny, joy-filled, heart-breaking moments in between.

You will feel like an exposed nerve...
you will feel so deeply that the travails of life will seem so utterly discouraging and the joys of life so impossibly amazing that you will feel like you alone 
(well, let's be honest, you've had a little help here)
have created a new and vibrant color that has never before been seen...
and you have!

It's all your own...well, let's include Bryan here too.

You get to define what family looks like.
You get to create traditions and sing funny songs and dance in the rain and try new foods and show someone what 
honesty and gentleness and trust look like.

You get to pray and hope and comfort in the way you've always hoped.

Motherhood and familyhood and babyhood are just lingo for hanging out together for a real long time.
I hope more than anything you get to do just that.

Linger.
Snuggle.
Cherish.
Steep in wonder.

Relax into this beautiful place and know down deep that you are the exact perfect person to mother this baby of yours and that this is no random collection of cells...this, my friend, is a full-fledged miracle and you, my friend, are the apex of that miracle...
the starting point.

The Table of Contents and the Dedication Page and the first few chapters...
but, my sweet friend, you are only that.

Your baby gets the joy and privilege of living with you in your daily life for awhile, 
a long while, 
but the time will quickly come when she gets to search out her own adventures and loves and laughs.
And you will have to smile generously when her new adventure begins.

You will hope that you have given her enough love to last through the trials that you cannot comfort and pray that you have given enough hope to know that drenching rain always brings new growth -- that beautiful deep green of life.

You will trust that faith and wonder and love and the strength of family will be enough.
And it will be.

Love is a beautiful circle.

You are enough.  It will all be just the way it should be.
Trust in the cosmic correctness of this moment in time.
Miracles happen.

Tonight I'm so grateful for my four beautiful, radiant, neon colors that brighten my world.
I can't wait to meet yours!

Sunday, October 13, 2013

Back to the Future



In the fall of 1982, I made my way to the University of California at Davis.  
I was a freshman in the freshest sense of the word.  
I knew nothing.  
Having been educated in Catholic schools for twelve years I was sheltered, 
academically prepared and emotionally unaware.
I was excited for the change...ready to meet new people and see new things.

Day 1, I moved into my off campus dorm.  
Being Linda's daughter, we were early and prepared.  I was moving in as soon as possible so consequently my two other room-mates were no where to be found.  
My mom scoured the drawers and carefully placed my super clean clothes in their rightful place.  
I paced.

I noticed across the way that the guys living across from us were very cute.  
I thought it was my lucky day.

My parents were ready to go shopping for items that were crucial to my success...a lamp, a fan, a bulletin board...and insisted that we find a store.  Since I thought my room-mates would be moving in while I was gone, I took the opportunity to write a note of welcome.  
It went something like this:

Hi Roomies!  I'm so excited to meet you.  It's going to be a great year!  I went to the store with my parents but I'll be back.  Love, Beth
P.S. Check out our across the way neighbors -- they are foxes!:)

Little did I know that my room-mates would be horrified.
Knowing nothing about me but that note, and having a lot in common themselves, I was lumped into the slut/man-eater/hussy category.
It was two against one immediately.

Luckily, I knew nothing of their instantaneous decision about me and went about my days being blissfully ignorant.  
I had rushed and joined a sorority which only fed the fire of their assumptions, but lucky for me, I was busy with that and didn't really notice.

I liked Billy Joel, Elton John, the Beatles and Foreigner.
They liked country.
They were both from rural towns.
I was from suburbia.
I liked preppy clothes and 501's.
They were Lee jeans and cowboy boots.
They both had boyfriends.
I wanted none of that.

About six weeks into school, we had a show down.
We had our first big talk about things that mattered...
I found out that I really could relate to the logical, no-nonsense smarts of Pauline.

She shared some of her music with me.
Turns out, Alabama is pretty good.

She told me about her family and her boyfriend, Bruno.
Her parents had immigrated from Holland.  
Her dad was an independent trucker when he wasn't working on a neighbor's dairy.
She was the second of three daughters and her older sister hadn't gone to college (yet).
Pauline was valedictorian of her high school -- a college counselor recognized Pauline's potential.  That careful guidance landed her with a scholarship and financial aid enough to attend college away from home...it was huge!

Pauline was not about to mess around in college.
She was a serious student and expected the same from her friends.
Bruno's picture (an 8x10 glossy) was next to her bed.
Life was very black and white and clear for Pauline.  I liked that.

Another few weeks later and our room-mate, Cheryl, revealed that she was leaving college at the end of the quarter to get married.

Pauline and I created what can only be called an 80's type intervention.
It consisted of a lot of begging, pleading and challenging the logic of such a crazy idea.
We assumed she was pregnant...she wasn't.
When she told us she just loved her boyfriend and missed him, we argued the feminist approach.
We tried to help her see that college was a great opportunity for her.
She was determined to marry her 25 year old policeman boyfriend by Christmas.

Exploring Antarctica seemed to make more sense than that -- for Pauline and me.

After that, the teams switched.
Pauline and I distanced ourselves from that insanity.
In Pauline's case, even though it wasn't rational, she felt an odd sense of betrayal...after all, Cheryl was her first friend away from home.
Together, Pauline and I grew closer.

Pauline got to know the guys across the way.
They encouraged her to rush as a Little Sister a fraternity -- the ag fraternity, of course.
She loved it.

Bruno's 8x10 found it's way into a drawer.
Pauline shared her beloved favorite Dutch candy with me: Dubbel Zout.
(I spit it out in horror...turns out it means "double salted licorice"...pure salt.)
I shared my mom's cookies.

We studied together, laughed together and became real friends 
living for two more years together in college.

That was 31 years ago.

Today, Pauline is married to Bruno.
She has three kids and lives just a few hours from me in a rural town.
We exchange Christmas cards and when our kids were little we met up halfway at a park to play and catch up.  
She isn't on Facebook.  We don't Instagram. 

I think of Pauline as such a big part of college for me.
She was everything that I wanted in a friend -- trustworthy, kind, funny, honest and ready for fun.
But it didn't start off that way.

*****

And now it's Mary Kate's turn.
She has her room-mate, Taylor, from a very different town and a very different life circumstance.
They are three weeks into it...maneuvering and negotiating...still feeling each other out and getting to know if they can trust each other and become friends.

*****

Yesterday, was my birthday.
I was missing my baker-daughter and my sunny son...both away at college.
I was wrestling with the profound lessons that are learned each day away from your family...when no one but you can fix it for you.

John called me outside.
There standing before me was an 18 year old boy, known only from pictures, Zeke.
He introduced me to his girlfriend who is a freshman at UC Davis.
He handed me some chocolate mint ice cream.
"My mom wanted you to have this for your birthday.  She hopes you still like chocolate mint."

Pauline's son.  And Bruno's son...all grown up too.

Out in the world.
Our kids are sharing their sunshine and still doing weird things for their mom.

I was so touched and tickled and shocked.
It was just what I needed -- the perfect birthday surprise.
Just the reminder that friends never really go away.
Those memories are tucked in a safe place and those moments are still real.

Mary Kate has a chance to find her Pauline.
Jack, too.

I hope they seize that chance and don't let differences prevent them from seeing the commonalities that they both share.

They might miss out on something great.

Thank you, dear Pauline, for your thoughtfulness, your kindness and your friendship.
31 years, 2 husbands and 7 kids later...
I'm the lucky one and I know it.

Wednesday, October 9, 2013

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.