Life

What do you think makes for a happy life?

Truth is...it's not much.

Something to love.

Something to hope for.

Something to do.

Those are the "grand essentials" of happiness...if you have that, you are pretty much batting 1000.

Sometimes we go through times where we are out of balance:

I have too much to do and nothing to love.

My dreams feel out of reach...my "hope for" is a joke.

My "something to do" feels mind-numbing and monotonous.

But, the process of life forces us to find a way to make room for the big three.

And when we do...it's magic...poof: happiness.

So, on this anniversary of the biggest decision of our courts to allow abortion to be legalized I want to ask all of you...

are we better off choosing death over life?

Does our world see the sacredness of life?

In our world of technology and amazing photography we can all clearly see that life in utero is most definitely going on in there.

We have fingernails and toes and full 3-D images that show perfect profiles of the children within.

Can we at least establish that the "clump of cells" concept is out dated?

That's no clump of cells...there's a full fledged human in there.

Now, that human might not be convenient.

It might be the object of very bad timing.

It might be born into poverty or sadness or a messed up world.

But what it takes to be a full-fledged human baby is so miraculous it deserves that chance.

With abortion, we've accepted the idea that life is a convenience.

We have swallowed the idea that some lives are worth living and others are not.

We've been enveloped in a world that takes the sacred and the holy out of conception and birth.

Anyone who has been witness to a birth knows that it is sacred ground.

A portal.

A passage from another world and into ours.

Shutting that down seems like an impossibility but the side that embraces abortion has done just that.

What are the odds that a baby will arrive in your life?

None of us know.

We can try and try and try and still be infertile.

We can have one child and be unable to have another.

We can have sex one time and find ourselves pregnant.

It's a crapshoot.

It always is.

And that's the beauty of it.

It's a leap of faith.

A crazy idea.

A wild, unbelievable blessing.

A miracle.

Yes, friends, every.single.baby.is a full-fledged miracle.

Healthy or not.

Poor or not.

Crack-addicted or not.

Miracle.

Out of the everywhere and into the here.

I have a child that the world views as disposable.

People have asked me "if I knew"...insinuating in the most despicable way (but always with the brightest smile and most interested face) that if I had known I might have chosen better...

I always answer that I did know -- in my heart, with the strongest premonition I've ever had -- but all of my tests came back 

all-clear.  Including my favorite one, the ultrasound where the technician pointed out all four chambers of Patrick's tiny baby heart, when in fact, he was born with no chambers and needed open heart surgery almost immediately.

Yes, I have a child that many, many people believe should be terminated...his life is too terrible, 

too burdensome, too much trouble to be allowed to breathe another breath.

Ummmm, not really.

Tonight, I had a regular old boring night.
I made breakfast for dinner.
Walked Caroline through the basics of borrowing in subtraction.
Found my son who is "disabled" more able than me with our TV system...finagling some way to watch You Tube on our TV?!?
Read books with both Patrick and Caroline before bed.
Listened to their prayers.
Cleaned up some dishes.
Procrastinated, yet again, on making lunches for tomorrow.

Not one time did I wish my son wasn't born.
Not one time did I watch him interact with his sister and think anything other than I wish they would stop annoying each other.
Not one time.

Babies are miracles.every.single.one.
My prayer is that some day our entire world can hold sacred every life:
the unwanted, the inconvenient, the disabled, the difficult, the very old and fragile.
Every life.

I don't believe any of this is a "choice".
Gifts that are given.
People waiting, just waiting, to rock your world...
one tiny baby footprint at a time.

Tonight, I am grateful for my children.
Grateful for all of the children I have been privileged to know and love.
I am also profoundly grateful for the gift of life...most especially my own.
Ordinary.
Clumsy.
Messy and funny.
Thank you God for this sacred time of being alive.
Man, is it beautiful.

Why It Matters

When Patrick was in kindergarten we needed some sort of incentive that he was willing to work for.

  We needed a pay out.  

Since I didn't want an obese child, the pay out couldn't be candy.  

Who am I kidding, Patrick is not candy focused, he's all about the carb.  

He, for sure, would have worked for a fresh baguette every day but I just couldn't do that.  

So we brainstormed and perseverated and finally landed on the library.  

Patrick and I could go to the library every day after school if he had a happy face day.

Oh, those happy face days!  

That meant that Patrick had listened, worked hard and kept it together.  

It also meant that he came in from recess on his own -- a true trial for Patrick -- 

since he couldn't distinguish when his time was up. 

If he saw anyone on the playground, he thought it was his time to play too.

At first, going to the library was a big deal.  

We celebrated!  

We cheered.

We did the happy dance.

And then we waltzed right in and Patrick spent a delicious amount of time 

l-i-n-g-e-r-i-n-g

over the videos and DVD's,

like a guy named Patrick at a bakery filled with croissants and baguettes and other sourdough options.

He relished the moment.

He perused and paused and savored so many choices.

The library was his spot.

Like all favorite memories, the library still makes him happy but it's no longer something he works for.

His happy face days are the norm now.

The library is just a pit stop on our way to the park...or a place to go to directly if there's research for a school project involved.

And so yesterday I casually suggested that we go to the library while Caroline had basketball practice.

Since he is still known for his slow pace of perusal, I was a bit worried we might be cutting it too close.

But we gave it a try.

Like a salmon finding its place to spawn, without thought, he honed himself straight into the kids' section and started the monumental task of choosing a video.

It only took about 5 minutes and we were done.

He had nothing.

"So, what do you think?" I asked.

"I need the computer." he replied.

so causal...so big

He gets on the computer and types in his item: Macbeth.

He finds all sorts of options but zeroes in on a Macbeth video in the adult section...we repeat the call numbers to ourselves over and over as we cross through the library.

We find the Shakespeare section and attempt to locate the video.

Nothing.

My mind: tick tock, tick tock

I suggest that we can put in a request for it and he agrees.

We walk right up and talk to the librarian who happens to be a young guy -- 

note to self: when did that happen??

He says it should be on the shelf...he meanders over to the section with us, finds it for us  

(library newbs) and Patrick is smiling...fired up...for Macbeth???

We don't have time that night to watch the show.

So I wake up to my husband leaving for work and telling me, 

"Yeah, Patrick is fully dressed and watching Macbeth."

Weird.

I come out a half hour later to check on Patrick and he's engrossed...

full middle English +Shakespearean drama + early morning = confused momma.  

I shake my head and keep my morning pace.

He comes out for breakfast asking questions.

"Who killed Macbeth?"

My mind needs simple gimme questions like, "Where's the toast?"

I do what all motley, sleepy, busy parents do...I tell him to Google it.

He does.

Fascinated he tells me that Macduff kills Macbeth -- 

because Macbeth had killed Macduff's wife and son.

I start to get interested.

I can't help it...

this whole weirdness is also super cool.

It starts to break through my early-morning mind fog: my kid is curious about Shakespeare?!?

I tell him that Macduff got revenge on Macbeth.  I ask him if he knows what that means.

He pauses and lets me continue...Macbeth gets killed because he killed other people...he had it coming.

He understands...and he reveals others that Macbeth has killed, Duncan and one other whose name I can't understand.

But here's what I do understand.

Talking to my 14 year old son about the plot of Macbeth in the early morning time before school was an unanticipated miracle.

My son has Down Syndrome.

The statistic most often given is that women who find out they are carrying a baby with Down Syndrome abort that baby 90% of the time.

I like to think that number is a little high...but if it's 75% or 50% it really doesn't matter.

Women are terminating their wanted pregnancies because of fear.

Because they don't think they will be talking Shakespeare to that child, ever.

Because they can't imagine someone with Down Syndrome being clever or funny or 

independent 

with dreams of their own.

Because all they know is mis-information.

My son is no "gifted and talented" child with Down Syndrome, trust me.  

But here's what he has had...access to the curriculum.

He's been fully included alongside his typical peers and exposed to rich literature, big ideas like 

social justice and freedom.  He's been in on class discussions and wrestled with morality.  

He's learned about the arts, history, science and math...just like any other kid at his school.

Once in awhile, his curiosity gets the better of him and he gets sucked in.

It happened when he had to do a big project about New York City in 5th grade.

It happened when he pretended to attend Apple Valley (a school set 150 years ago) in 3rd grade.

It happened with the Terra Cotta Warriors and with 6th grade science camp and music.

And now it's happened again with Shakespeare.

The problem with limited curriculum for people with cognitive disabilities is that we limit the menu.

I don't know if Patrick will become a vegetarian, passionate about mangoes or obsessed with granola.

Who am I to decide??

He gets introduced to new foods all the time...that's part of living.

It's the same in school.

People like Patrick deserve to have the same menu as anybody else.

We can't know what will intrigue or light the fire of anyone's mind -- people like Patrick most of all.

If you would have asked me if Patrick would love Macbeth, I would have guessed no.

I would have guessed wrong.

People like Patrick love learning; they light up with excitement when they figure it out.

Just like anybody else.

People like Patrick deserve more opportunities and more depth and more enrichment in school.

Why??

Because we can never guess or know what will touch their hearts and speak to their soul.

Their individual passion and interest is unpredictable and incongruous.

Just like every human on the planet.

So, yes, it matters if people like Patrick get to learn alongside their typical classmates.

Yes, it matters if opportunities are limited.

If the curriculum is watered down and dull.

No mind should be wasted.

Nobody should be denied.

We should all get the chance to hate Shakespeare...or in Patrick's case, love it.

It matters.

Seventh Heaven

Little girls in a nutshell.

Giggle and laugh...got it down pat.


I've been hearing some new sounds around my house.
She whistles now.  Loud and clear.  Can even carry a tune.
I'll hear her whistling to herself...singing a song too.
It's breath-taking in its lack of self-consciousness.

She's seven.

And I don't care what people tell you about five, or six or even eight.
Seven rocks.

She is itching to play games.
She's an Old Maid card shark, that one.
I'd teach her poker but I'm pretty sure I'd lose my shirt.
She loves board games and counting up her money, saving up her get-out-of-jail free card and rounding the bend.

She's creative and sassy and funny and full of joy...bubbling, oozing, crazy joy.
She's tapped into that divine source, effortlessly, and I try to stand right by her just to rub shoulders with the source...
sometimes it works.

Seven.

A reader.
A thinker.
A curious cat.

Asking questions.
Yesterday's: "Mom, when you go on your walk with Buddy, can you pick up that litter?
Me: Huh?
"I want to have this...and she points to a sticker that says "pick of the litter"."
(Our world is so confusing.  How do I explain that this litter is good and that the "pick of the litter" is the best of the bunch, regardless of the word's proximity to trash?)

I smile at her and try not to snicker.
"Oh baby, you definitely have the pick of the litter.  Buddy's the best."
Careful, trusting acknowledgement.  She knows.

On Sunday, we had a few minutes together with no one else around.
I asked her if she wanted to go out to lunch...but the enthusiasm was lackluster.
Pause.
How about a tea party?

Eyes B.I.G.
Instant hug.

*Jackpot*

Houston, tea party it is.

So we made our egg salad sandwiches but improvised with tortillas -- we had run out of our delicious sourdough bread -- California problems.
We steeped our ginger peach tea.
We peeled baby oranges.
And found ourselves pausing and resting and truly being leisurely with our tea.

Must.do.this.more.

Seven.

It's a little slice of heaven.

So tonight I'm grateful for the dancing, singing, twirling little girl that graces my days.

Grateful for her exuberant love of living in our amazing world...

where shoes can get tied, mouths can whistle and little girls finally learn 

how to flatten the gum just right to blow a bubble.

There are so many tricks to know.  So many games to play.

May we always stop to dance and sing.

Spinning, laughing dancing to

her favorite song...

Eyes wide open

Always hoping for the sun

And she'll sing her song to anyone

that comes along.

Fragile as a leaf in autumn

Just fallin' to the ground

Without a sound

Crooked little smile on her face

Tells a tale of grace

That's all her own

Spinning, laughing dancing to 

her favorite song...

Seven Years -- Norah Jones

Salt Water

"The cure for anything is salt water: sweat, tears or the sea."

--Isak Dinesen

For the last few days, this has been my view.  That isn't enhanced.  It isn't altered in anyway.  It was taken with an Iphone and the glory was captured in miniature...but the beauty is so stunning, it comes shining through without effort.

I'm at the beach.

I was born in Pensacola, Florida.  

As far as I can tell, I spent only a couple of years there and then moved around to various locales in Iowa, Illinois and finally California with my family growing up.  I attended college in California's central valley and have lived pretty much right around there my entire adult life...but I've always had a tug, a strong one thats just keeps getting stronger, pulling me like a magnet, to the ocean.

I've always loved the ocean -- enjoyed our honeymoon in Bermuda -- but never could explain its magic.

It was calming, soothing, refreshing, invigorating, beautiful but most especially healing.

When Patrick was sick with leukemia, he had 60+ days of no detectable white blood cells.

He was not hospitalized but he was house bound.

He could be around no one.

He was isolated and by association so was I.

At first it was no big deal...I wandered around with Patrick in my car and would find empty parks.  Zip him out of his car seat, let him swing and play by himself, and hop back in.  Usually that effort would wear him out and he would nap, I'd listen to music and I would muse on the starvation of the soul without connection to others.

I became acutely aware of the poison of solitary confinement.

I related to castaways alone on an island.

I felt imprisoned when truly the only prison was in my mind.

And then I stumbled on an idea...I could take Patrick to the beach.

While the other two were in school, I would pack a picnic, drive an hour and a half and head to a lonely strip of sand with Patrick.

The sea gulls would be our welcoming committee.

The waves our hometown band.

The sand and shell collecting and castles and other creations would be our distraction from white blood cell counts and the language of leukemia.

It worked.

Like some sort of alternate universe, at the beach, we were healing and whole.

We were refreshed and vitalized.

Baptized in a way.

Over and over again.

Slowly, those 60 days chipped away...Patrick's counts got better and he could be with humanity again.

Most especially, preschool!

We've visited the beach in good health and in celebration many times since.

But, when my mom got diagnosed with lymphoma and didn't want to deal with the horrible news...I headed to the beach.  I put on my same T-shirt, made my same picnic lunch but this time I had a little companion named Caroline and she made the joy of the beach all her own.

I can't explain it's majesty.

I try to think of people who are land bound and have never seen the surf:  

never felt the waves tickle your toes, bury them and reveal them all in one fluid motion.  

I try to imagine never knowing this healing balm but I can't.

I like to think that my beach connection was created at birth, on that panhandle long ago.

All I know is that when I am here...like a marriage, in good times or in bad, in sickness or in health, for richer or poorer, the beach is my steady companion, constant and unyielding, always comforting.

Its rhythm, its cleansing presence, its energy is now a part of me.

I'm getting closer and closer to finding a way...demanding a way... to stay here for bigger and bigger chunks of time.

It will take sweat and tears, I am sure...other gifts of salt water...but I am willing.

My new year's resolution: find new beaches.

I can only smile at the opportunity of 2014 and share my grateful heart.

Life is rich with ordinary magic.

Find yours.

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.

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.

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.

I went to the National Association for Down Syndrome. 

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.