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!) 
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.

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.


  1. I love you so very much! Beautiful on the inside and out. Thank you for making me pause today and remember our friend and what life is really about. I am glad I have you!

  2. Nicole! I love you!! SO so grateful that our paths have crossed because of that beautiful something extra. Thank you for taking the time to comment. It means a lot. :) I am grateful to have you and your beautiful family too! ~Beth

  3. I would live to have those days back again To live and live all of us together again. To hug Annette. You. So many others. Love you and Happy Mother's Day my friend