The Naughty List

Tonight she asked if I could snuggle in bed with her.

She wanted me up close and holding her hand...that's rare these days, so I went with it.

She didn't say much.

But the quiet wasn't comforting.

It was heavy and it made the room seem extra dark.

All of a sudden, out came the question...

"Do you think I'm on The Naughty List?"

Shit.

Let me set something straight right now.

I'm not a fan of the Naughty List.

I don't use it...or talk about it...or even mention it.
And she hadn't done one thing that would be even close to earning The Naughty List distinction and yet, here it was.

I'm not a fan of doing good because you are guilted into it.

I know that must seem ironic since I am most definitely Catholic and we are good at guilt.

I'm all about doing good, being good, acting good 

because it's the right thing to do...

because that's who you are...

because you know what's important and you value it.

So the tiny voice asking about The Naughty List sunk me.

I had to snuggle in bed and take a deep breath and think about things...

I got close to her soft sweet cheek and whispered to her the only comfort I could bring.

"I know for sure you're not on The Naughty List.

For sure.

No doubt about it."

"Remember, I'm friends with Santa...good friends...I know."

Her body softened ever so slightly and I held her hand in the dark.

I inwardly cussed out whoever created that crappy old story we dish out to poor unsuspecting kids.

We know when we blow it.

We don't need The Naughty List adding another layer to our Big Mistake.

I tried to explain about the process of living and the idea that mistakes are just part of the deal.

I tried to assure her that the normal, day in day out, stuff of life was just that.

Santa understood.

But it's a tough gray zone.

We make mistakes...does that make us "bad"?

Are we only as good as our last mistake?

How do we ever make up for our mistakes?

Do you ever get off The Naughty List?

*****

In the dark, listening to her breathe, feeling her familiar little hand, smelling her sweet Caroline scent I remembered another mother on another December night fighting for her life.

She died on December 23rd. of breast cancer. leaving behind a 4th grader and a 2nd grader when Jack and Mary Kate were in 3rd and 1st.

There was a time, long ago, when every mommy moment of mine was suffused with all of the mommy moments she had never had...that her boys never knew.

In my kids' teen years, when it was hard, I held close the privilege it was to be right there in the center of the ugly.

Even when it was extra hard I thought of her...and her white chocolate and cranberry scones.

But I admit, I hadn't thought of her for a long while.

Years.

Until tonight...when my December 22nd sliding into December 23rd reminded me...

of how lucky we are to be right there for the hard-ness, the bad-ness, the I-can't-believe-this-is-my life-and-not-some-really-bad-movie ugliness.

Life is hard.

Really it is.

Why add The Naughty List?

Tonight, as of this very minute, it's gone.

Santa has no list.

He doesn't need one.

Dude, you are good...so good...and if you're not...well, we'll deal.

You don't need no list to tell you a thing.

Trust your gut.

Know yourself.

Own your actions.
Fix your mistakes.

Make it better.

Move on.

Tonight I'm grateful for late night snuggles and quiet questions in the dark.

That's the good stuff.

The Naughty List, on the other hand, well, that can hit the road.

*****

And Mary Lou, we still miss you.

Still don't understand.

Still wish it weren't so.

December 23rd is hard.every time.

God's Greatest Gifts

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

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

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

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

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

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

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

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

Let me have kids.

They were always called kids in my adolescent mind.

Always plural.

Not snuggly babies.

Or baby dolls.

Kids...and I wanted plenty.

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

Four.

That still seems a bit greedy on my part.

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

These four are by far my greatest gifts.

My biggest joy.

My purpose.

They are the thread that helps everything else make sense.

I see my children in every child I encounter.

I see every mother in me.

I see every family in mine.

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

Suddenly, the marginalized were part of me.

The "broken".

The disabled.

The slow.

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

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

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

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

It was way better than any dream of mine.

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

I never could have imagined it.

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

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

and for the heartbreak.

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

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

What Love Is

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

What I Want You To Know?

Well a lot has happened since that time.

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

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

all.the.way.around.

Not one single step has been easy for sweet Jonah.

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

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

LOVE.

I've seen shy smiles.

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

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

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

This, my friends, is what love looks like.

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

while Ebola becomes a common topic for discussion,

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

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

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

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

Love isn't asking for an easier path.

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

Always protecting.

Always trusting.

Always hoping.

Love shows up.

Day in and day out.

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

Sweet baby Jonah is doing much better.

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

He's had his surgery for his intestinal blockage.

He's even had a bath!

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

Jonah is blessed to know deep, abiding love.

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

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

Melissa and Jeff -- congratulations to you both.

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

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

Love never fails.

You know that.

Thanks for the reminder.

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

courtesy of Katie Daisy Art

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

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

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

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

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

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

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

What's a mom to do?

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

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

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

Dang it.

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

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

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

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

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

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

Dang it.

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

But don't forget to just be.

Just sit in that wonderful quiet and know yourself.

You're pretty great.

Go show the world.

Your fan club awaits.

What I Want You To Know

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

*****

I have so much on my heart right now.

So much I want you to know.

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

YOU CHOSE LIFE!

When the world was telling you otherwise.

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

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

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

It is all going to be okay.

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

You chose life.

You won't regret it.

Ever.

Because by choosing life...

you really chose love.

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

love truly does conquer all.

If you make a choice out of a loving place,

you will always be right.

And if you choose fear,

most of the time,

you will be wrong.

Simple as that.

This precious baby is welcome and wanted and loved.

Right now.

In this moment.

And that is enough.

Having a baby is miraculous.

You get it.

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

Seeing your bright eyes.

Hearing your hopes and plans.

Watching you together...

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

You got this.

So what do I want you to know?

Don't listen to experts.

Don't listen to professionals.

You know best.

Oh wait, clearly, you know that already.

Ok, next...

Listen to your heart.

Follow your gut.

Open yourself up and the universe will guide you.

Oh, wait, you've already done that.

Clearly, you're awesome.

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

Snuggle and cherish.

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

It just goes too fast.

Your baby is good enough.

You are good enough.

And somehow 

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

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

Laugh a lot.

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

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

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

He paid a white-toothed-slime price.

But we still laugh about it many years later.

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

the ability to slow down.

Your baby's pace will be exactly right.

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

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

Each milestone will be savored and treasured.

Every step a victory.

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

for his presence.

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

Slow is beautiful.

That is my take away.

Slow it all down.

Take a lot of pictures (and videos).

Read a whole bunch of board books.

Shake some rattles.

Stare a lot.

Stare some more.

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

and it won't be lost on you.

You are brave, adventurous, loving and accepting.

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

Seems pretty fair to me.

You're my kind of people.

I'm honored to know you.

Welcome home.

Falling Down

Caroline loves to roller blade.

Most mornings she puts them on first thing and as soon as she is home from school, 

they are back on her feet.  

She's content to roll around the kitchen and living room in and endless loop.

She roller blades outside in the back yard.  

She insists that it is "blading" and always corrects me if I ask her to take her skates off.

She eats dinner with them on.

She does homework with them on.

She reads books or watches TV and forgets that she has something attached to her body.

She's a wee bit obsessed.

Her happiest time of the day is when we walk our dog, Buddy.

She can rollerblade through the neighborhood at supersonic speed.

She hunches over like a roller derby queen and speeds up and goes as fast as her risky self will allow --

which is awful fast to an onlooking mom.

She's gotten good...like I said, they're beginning to just be a part of her body.

She is now practicing tricks -- like jumping over cracks in the sidewalk, or doing the
ice-skating maneuver of the one-leg-in-the-air-glide.

She's confident and proud.

And then a tiny stick got in her way.

She loves this one driveway we pass each day.

It has a big U-shaped driveway and she whizzes up one side of the U and spins and
whizzes down the other the side at top notch speed.  

One time she did it 11 times back and forth...even I was getting dizzy.

And then the unthinkable happened...she bit the dust.

It wasn't a horrible wipe-out as wipe outs go -- but she got a sizable scrape on the side of her belly and nothing else...but a big ole sense of what just happened?

She was shocked.  Stunned.  

Mortified and mad.

She was quiet as she roller-bladed home -- defeated -- and I couldn't yet tell just how injured she was so I didn't push.

At the injury inspection I made a comment about how it wasn't that bad...but she couldn't even respond.

Big, heaving, gasping cries came over her.

Tears and more tears.

I tried to cajole her into the shower...no go.

Tried to be soothing and understanding...not working.

I tried the brush-off -- really, kid, you're good...complete flop.

Then I just picked her up and undressed her and plopped a wailing, inconsolable kid into the tub.

She resisted the water, not wanting her scrape to sting, but I insisted, 

which only amped up the situation.

I noticed her forehead...speckled with red splotches like she used to get as an infant after crying really hard...and I tried to tell her it was all going to be okay...back to soothing as an option.

Finally, she leaned back into the water and let it all comfort her and released that soggy sigh that all people release after that final burst of crying, but somehow with kids it tends to be the checkered flag.  We made it.

I tried to help her notice it..."Look, Caroline, you made it over the hump.  You're going to be OK."

A tiny voice and tear-filled bue eyes looked up, 

"I think it was a stick." she reflected.

"It might have been, baby.  But, you need to know that the reason you like roller-blading is partly because of this right here.  You enjoy it because you feel excited.  You know you could fall down.  You accept that part...and you love when you don't."

"But sometimes you do."

"And then, you just have to get back up...and try again."

She slowly got out of the tub.

I snuggled my fresh-from-the-tub-girl -- a treat that rarely happens anymore.

I held her for the briefest of moments and treasured this chance.

I'm so grateful to be able to help her up and comfort her...

I hate it when they fall...

any of them.any.time.

But isn't that where so much of the real learning happens?

We all fall down.

We must get back up.

There really is no choice.

We can cry and scream and blame the stick but it doesn't matter...we will fall.

It's what happens after the fall that matters.

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.

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.

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!

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!

Look...a fragment of eternity

"I'm saying look, here they come, pay attention. 

Let your eyes transform what appears ordinary, 
commonplace, into what it is, 
a moment in time,

an observed fragment of eternity." 

-- Philip Levine

Caroline -- age 7

Sometimes you look at them and they take your breath away.

What is your normal, routine, just humming along gig becomes frozen in a moment 

and the beauty dazzles you.  

It is exquisite.

You feel suddenly breathless.

You squish it into that memory place hoping it will stick.

You pause enough to really feel and know this "fragment of eternity" and then 

in a whisper of time it has vanished.

There's no capturing it.

Just as quickly as it landed, like a butterfly miracle, the moment has moved on into the sea of next moments and new thoughts or needs or things that must be done.

Today I had one.

I looked up at her with her black spot of missing baby tooth, summer streaks of light in her hair, enveloped in the shade of crocodile green leaves pausing for that moment to give me the 

yes-I-can-climb-this face, and I snatched it right up.

Summer's ordinary blessing of time at a park.

Climbing, playing, exploring and investigating this amazing world.

Plucking trumpet flowers off of vines.

Swinging and sliding and jumping and reaching new places.

All in one moment, it crescendoes. 

I notice.

I wrap my heart around it.

Thank you is all that can come out of that moment.

Thank you for her and for parks and friends and good health and for the will and wonder to climb and thank you for letting me be here right now, in this place, to notice.

Thank you.

Like Oxygen

"Smile, breathe and go slowly." -- Thich Nhat Hanh

My sister, Mary Claire, and my mom, Linda -- December 2012

For the past few days I've been reading about other people's mothers.  They've distilled their mom's wisdom into some bits and pieces.  They were able to list particular traits or sayings that their mother's had that were carefully passed on to them.

I tried to think of personality traits of my mom's.  I tried to see if I could chunk out the wisdom. 

I decided that it was impossible.

The presence of my mother is like oxygen.

I simply know it is there.  I take it for granted.  I never consider what it must be like to have no oxygen. I try to take deep breaths and acknowledge the ever present, life-affirming place that oxygen plays in my world but that's as far as I get.

I don't want to consider gasping or begging for oxygen.

So...for today, again, I'm not going to.

Call me childish.  Call me foolish.  

I accept it.

I need my oxygen.

I will however share here a few things that oxygen has given me.

1) The giggle: if you have enough oxygen, you have enough air in those lungs to giggle.  My mom is the best giggler I know.  You actually CANNOT get her going or she will not stop.  It gets awkward and embarrassing...especially in mass.  We have been the recipients of many evil eyes, trust me.

2) The snack: if you have oxygen, then you will need a snack.  Guaranteed.  If you are out of sorts, you are probably hungry.  If you are going on a trip, however short, you MUST have snacks.  If you are on a road trip and don't bring a cooler full of treats well then you have shirked your God-given duty.

3) The ability to choose the right pen -- it's always about the right pen.  If you have enough oxygen, then you have the ability to consider your pen options.  Color coordinate your written word with your stationery, please.  It's the least you can do.  It really does make an impression.

4) The love note: with oxygen, you can definitely find the time to write a little note on a napkin.  It doesn't have to be fancy.  A little "Isle of View" (say it fast) and you're good to go.

5) The ability to enjoy my freedom: Get out there and do something with that oxygen.  Go see something.  Go visit someone. Cheer for your team.  Make the most of it and get going.

6) The chance to be nice:  if you can breathe, well then, you can be nice.  Simple as that.

7) Constancy: yep...I've never known life without oxygen.  Never struggled for it.  Never knew that you could fight for it and never know it.  

My world is full of my mom's amazing presence.  

She is always there, thinking of me, hoping for me, rooting for me. 

Today, I am grateful for my deep-filled lungs of oxygen...otherwise known as my mother's love.

Ready...breathe.

Inhale gratitude, exhale judgment.

My Ugly Shoes

I have a friend named Beth who has a daughter that has been battling childhood cancer since last August.  She is finished with treatment but still fragile.  Any illness is a worry.  Any weird symptom takes her to that dark place.  Anything but her daughter being her bouncy, joyous self brings the shadows, the worry and the heartache.

I know it well.

May 16th, 2002, Patrick was diagnosed with Acute Lymphoblastic Leukemia.

August 2nd, 2005, he finished all treatment.

He is considered cured.

Yep. Miracles happen.

Smart people, devoted researchers, tender nurses, vigilant doctors change lives and create some sort of critical mass.  A deadly diagnosis just a few decades ago is now curable.

It's a hellish process but you get there.

Here he is:

Celebrating St. Patrick's Day 2013 at a pub with his dad and big brother.

He gets to live his life. Try new things.  Contemplate girls and dances and traveling and what high school will be like.  

He has a future...because somebody lost theirs.

I can't help but hold close all of the children who came before Patrick.  Those that tried new treatments, new tests, new therapies and got to the point that they'd try anything.

Those that knew they wouldn't make it and still they tried.

Not long ago, childhood leukemia was a death sentence.

For some types, it still is.

But the people at St. Jude's kept at it. 

They wouldn't give up.

St. Jude, the patron saint of lost causes, let them keep trying.

St. Jude's Hospital in Memphis, Tennessee, still takes the lost causes of children's illness.

They still work tirelessly on the most devastating diseases.

They work miracles everyday.

St. Jude's is special, very special.

I like to tell this story so that people can stop feeling just good about St. Jude's and can start to feel in awe.

There was an incredible research scientist that was from Australia.

There was no hospital in Australia that was like St. Jude's.  Nothing even close.

He decided to take all of his training and his passion and move back to Canberra to replicate St. Jude's over there.  

He got big donors.

He got amazing researchers together.

He built a state of the art research center for Australia.

For six years, he gave it a go.

It failed.

This doctor who gave all of himself over to this mission had this to say about it:

"There is no place like St. Jude for a scientist.  There is a terrific atmosphere in the highly interactive clinical and basic science programs, and the tremendous levels of funding make it all possible for me to do my research without interruption." 

--Dr. Peter Doherty, Nobel Laureate in Medicine, St. Jude Children's Research Hospital.

Dr. Doherty doesn't say it out loud but I will.  Something very holy and sacred is happening at St. Jude's.  Something that is intangible.  Something that can't be researched or itemized but something that everyone who has been there knows...a greater power is part of the solution there.

Patrick's amazing doctor, Dr. Jolly, did a three year fellowship at St. Jude's.  He knows.

We know.

Patrick benefited directly from that research and that sacred work.

He has his life today because someone dared to fight against the lost cause of leukemia.

Today my friend, Beth, posted this poem:

SHOES
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I don’t think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they’re glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I’m not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
-Author Unknown

I know those shoes well.  They've been at the back of my closet for awhile, but I still know them.

I wish I didn't.

However, I'm grateful today for all of the others who have worn those same shoes before me.

Those that took a chance and searched for the impossible.

I'm grateful to the mothers and fathers who had nowhere else to turn and were welcomed into St. Jude's.

I'm grateful to Danny Thomas for creating a powerful place of hope and care for the worst cases and the most desperately ill children in our country.

I'm grateful for miracles, most especially the one who shares my world. 

**If you want to say thanks, send a donation to St. Jude's.  Trust me, they will use your money well.**