Thursday, August 25, 2016

Diminished Capacity

On Saturday, I attended a funeral.
For a single mom...of 8 children.

Yes, 8 children.

Her name was Bernadette
She was the definition of love and light.
Sunshine and faith.

It's an absolutely huge loss for all of us.
Impossible to understand.
Please keep all of us in your prayers, but most especially, Bernadette's beautiful kids.


On Sunday, I dislocated and fractured my ankle.
I wish it was a good story but it was a terrible combination of a basketball near my desk.

I had the gift of an incredible crew who stabilized my ankle and got it ready for more x-rays and orthopedist recommendations -- 
Dr. Angel lived up to her name. I am forever grateful for the kindness and care I received in that emergency room:
Alicia, the nurse, Mike, the X-ray guy, and many others.

It's no fun.
A real drag.

Oh well.


On Monday, Patrick had to get his blood drawn and we had to wait for the blood count numbers.
Tuesday, he had his big appointment with both his cardiologist and his oncologist to just have a check up...see how his heart is doing...make sure it all still looks good after having leukemia years ago.

Those blood count numbers still, 11 years later, haunt me.

All day long, I wait on the panel of numbers.
Acting casual.
Heart racing.

The numbers should be good.
Everything in Patrick's world has been healthy for quite awhile.
I try to talk myself down off the ledge.

Deep breaths.

So, on Monday night, waiting for the numbers,
I try to check Patrick's email and Kaiser account that would give me the full range of numbers.
The nitty gritty details.

But I couldn't remember his pin code. 
So I had to call for help.

If you're 13 years of age or older, your medical information is private and separate from your parents.
No kidding.
Parents need their child's permission to see anything in their record.

That's messed up.

I know I will have medical bureaucrats telling me why it's not messed up...
but on Monday night, it was messed up...
and on Thursday morning, it still is.

I just wanted to know his blood count numbers.

So, I call up Kaiser and ask them to give me the numbers.
I ask to have access to Patrick's medical online information.

I even use the Down Syndrome card, thinking it might give me an edge.

"Oh well, now that you mention that, Mrs. Foraker, I can help you get in to his records."

I'm so stoked.

Leg up on pillows, I follow the voice's advice.
I click this and type in this and get to new page after new page that is letting me into the system...

...and then I have a choice:

I have to click that my family member has "diminished capacity".

What on earth??

And then, like some movie with a million tiny photos flashing by, I picture Patrick...
typing up Romeo and Juliet into a screenwriting app.,
creating his favorite crazy sandwich combo,
riding his bike to school,
chilling in the backyard with John,
giving relationship advice to Jack and Mary Kate,
directing his cousins and younger sister in various stage ensembles,

backwards in tying his shoe
taking his first shower on his own
winning school awards
surviving open heart surgery and looking up at me as a tiny baby waiting for me to be brave enough to nurse him afterward
dancing and thriving through freaking leukemia...

...and I am embarrassed to admit that I clicked that damn button and agreed with the computer that my kid has "diminished capacity"

I sold my soul to the devil.

Yes, I protested it as I did it.
I let the voice know that I didn't agree with it...
but I was desperate. 
I wanted the numbers.

And then, the universe did what it does in moments like gave me a one-two punch.

"Oh, wait, you live in Northern California, so that won't work, you'll have to get your child's pediatrician to let you access your son's records."

Of course.

The voice did have the courtesy to let me know they were
"in the normal range".

But, being a leukemia/blood count expert, that didn't help much.
I wanted the numbers.


Ever since that moment, I've been trying to wrap my brain around those sickening words
"diminished capacity".

It's settled on my heart that this is the reality of how the world sees Patrick.

The truth is that at this very moment, I'm way more diminished than he is.
Can't get around at all.
I need tons of help.

Nobody begrudges me that help.


We all need help.

I've found solace with Desmond Tutu's wisdom.

Speaking about Ubuntu:

"It is the essence of being human.
It speaks of the fact that my humanity is caught up and is inextricably bound up in yours.
I am human because I belong.
It speaks about wholeness;
it speaks about compassion.

A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share.
Such people are open and available to others,
willing to be vulnerable,
affirming of others,
do not feel threatened that others are able and good
for they have a proper self-assurance
that comes from knowing that they belong in a greater whole.

They know they are diminished when others are humiliated,
diminished when others are oppressed,
diminished when others are treated as if they are less than who they are.

The quality of Ubuntu gives people resilience,
enabling them to survive and emerge still human despite all efforts to dehumanize them."


So, somehow, some way I feel the need to clean the slate...
to let the world know and Kaiser know and every other person on the planet know that 

That legal term needs to disappear.
That medical model of disability needs to have bricks thrown at it.

We are all human.
Inextricably bound together.
Vulnerable and Needy.

We all need support.

I want to live in a world where Ubuntu is what we expect of each other...
what we give each other.

I'm starting with myself.

World, I pledge to offer Ubuntu.
to everyone.

Please join me.

Let no one be diminished.
by words or deeds.

Saturday, August 20, 2016

Light The Way

If I had to pick one, I'd Be A about you?

Light, for me, is magic.

Finding my way in the dark of night, stumbling and bumbling, feels like my true self.
Opening my eyes each morning and receiving the gift of sunlight and new eyes that can see clearly feels like some sort of angel sitting on my shoulder guiding my way.

Sun salutations?


Fireplace warmth.
Reading lamp.
Camping lantern.
Flash of a camera.
Christmas lights.
All of it - every last twinkle - makes me smile and fills my heart.


My other love...books.
Ever since I've been little I've escaped into their world.
Books are friends.
They share dreams, wisdom, an alternate universe, the dangers of evil, the strength of heroes, 
the laughable, the cringeworthy, the thought-provoking.
They are what I turn to in times of deep sadness.
In boredom.
In joyful moments of lounging.
They provide supreme comfort.

Books are also a link to friends and strangers.

I remember standing in line at midnight for not one Harry Potter book but four different ones.
I got teary seeing all those people lining up, excited and energized, for a book!
Those were my people.


So it only makes sense that a book would lead me to light.
Do you know Susan Branch?

I feel like I might have shared her with you before...
she's a cookbook author who handwrites every page of each book and then sprinkles it with watercolor pictures and quotes and provides the most delicious of recipes.

Her first book is called The Heart of the Home.

Her vibe is all about the beauty of home:
a carefully made meal, a mindfully set table, flowers in a vase, family.
She's about comfort and care.

Love distilled into food and friendship and family.

I found her cookbooks probably from my mom and then became a hard core fan.
I just knew we would be besties if our paths could cross. :)
But over the last few years, things have changed.

Susan Branch has moved from writing cookbooks to sharing her life story.
In the span of four years, she's written three books:

If you look carefully you can see all my tabs...loved too many pages in these books.

And so it came to pass that I shared Susan with anyone I could... friend Michelle made a spontaneous road trip down with me and toddler Caroline to Susan's store in Arroyo Grande, California when it was closing sister-in-law, Audrey, would share her favorite Susan Branchisms friend, Kim, would read and share and meet for coffee...and even come with me to a book signing when Susan and Joe made their cross country road trip to independent bookstores all over the nation.
Martha's Vineyard was always a place to visit...someday.

I live on the west is all the way across the country.
That's a thing for another day...

...only it didn't feel like that any more.
My Somedays need to be more present-day.

How many Somedays do I have??
Only this day right

My friend Kim was convinced we should create a trip to Martha's Vineyard with our husbands...that sounded pretty great to we speculated and dreamt and discussed over coffee.

Months later she uttered the truth out loud:
"We're never going to go to Martha's Vineyard with our husbands, are we?"

It sat there...getting dusty...before I could wish out loud:
"Nope...but we could just go."


It rolled around in my head.
It flexed its muscle in my heart.
The seed was sprouting and I found myself randomly smiling at the thought.
What if?
Why not?
I shouldn't.

And then, well, I started poking around...
how was John's work schedule, the kids life schedules, were there sisters who could pick up after school, a babysitter who would hang out for some hours???
Those pieces of the puzzle felt like border pieces. They felt smooth and possible.

What about flights?
Kim's schedule?
Her family?
Hotels? Ferry rides? Airport shuttles?

And like some crazy meant-to-be moment the universe kept saying 

Nothing was hard.
The flights weren't expensive.
The hotel was available.
Everything we leaped!

Within ten days of wishing out loud, it happened.
This is real. Oak Bluffs Ocean Park.
Please go there.

  We chose to make our way to Martha's Vineyard in August so that we could attend 
The Grand Illumination.
Something that Susan had described in her book.

There is a Methodist campground in Oak Bluffs on Martha's Vineyard.
In the center is an outdoor covered amphitheater.
It's used for church services on Sundays...
and outdoor movies and concerts and gatherings all the other days.
Surrounding this amphitheater is grass and trees and on all four sides, tiny Gingerbread cottages. (their words, not mine)
These tiny homes are built on what used to be tent platforms.
They are every color imaginable...
blue, purple, orange, red, yellow, pink
a rainbow of relaxation.

Nothing is serious here.
Except family.
In this little spot, family is everything.

For 148 years these families have been celebrating The Grand Illumination.
They decorate their gingerbread cottages with Chinese lanterns - every front porch is adorned - and then these families sit on their front porch and chill (as Patrick likes to say) until dark.
They want to talk to you and share their family's story.
They make food for you to snack on while you visit.
Free drinks. Some houses give away glow in the dark necklaces.
Or flags.

But they all give away friendship.

Two tourists with no clue...meandering...and visiting and everyone wanting to share the secrets:
Get their early.
Bring a picnic.
Be ready to sing.
Ask the people about their houses.
Take pictures.
Soak it all in.
These two were born on the Vineyard...lived their whole life here. Lucky.
Hand painted lanterns...just because.
A veteran just waiting to share his story.

Yes, this is the family that belongs to this home.
The woman in the pink on the right hand side made every costume for her family.

So we soak it all up, have a picnic of egg salad and turkey sandwiches made from
Skinny's Fat Sandwiches and get ready for the dark.

We know there is some sort of singing concert before the lanterns are like true groupies we stake out our seats early, expecting a California-sized crush of people.
We're here after all. :)

But, although every seat fills up, there's no frenzy.
No huffing and puffing about getting the right seat...or who is saving seats.

Right on time, the Vineyard Haven band begins a patriotic concert to rival anything you've heard in Washington, D.C. or any other hub of American life.
The Boston Pops got nothing on Vineyard Haven.

Plus, there are a few thousand of us willing to sing.

So we belt out every tune you can imagine, beginning with, I'm not kidding,
Amazing Grace.

I just sit there, wondering, truly if this is real.
The tears come before the second verse.
Dancing children.
Entire families.
People who have been doing this for more than half a century.

Together we sing:
76 Trombones
Old New Orleans style hymn
Star Spangled Banner
Working on the Railroad
I Don't Want to March in the Infantry
Happy Birthday
In the Good Ole Summertime
Michael Rowed the Boat Ashore
Amazing Grace - just for good measure
My Hat It Has Three Corners
John Brown's Baby Has a Cold Upon Its Chest
God Bless America
Yankee Doodle
Glory Glory Hallelujah
Grand Old Flag
America the Beautiful
John Phillips Souza March

You would think we might be over it...
but in truth, we were hypnotized.

The Obamas were visiting the island while we were there.
Plenty of black SUVs lurked around every corner.
Crowds gathered all over trying to get a glimpse of the President and his family.

We never saw them...
but the whole time I was singing I was wishing he could be watching this from some little obscure Gingerbread cottage.

Wish he could see these people, our shared history...and just feel the connection we all had.

I like to pretend he got to see it.
So he can know.

And then the emcee called up the person who has come to The Grand Illumination 
for the longest time. 
For us, the woman was attending her 68th Illumination.
She had the honor of lighting the first lantern.

In the dark of that giant amphitheater we strained to see the tiniest light surrounded by a paper lantern...the woman walked to the very edge of the theater and like magic, all of the lanterns on the theater lit up in a gorgeous circle of light.

And then...poof...all of the 300 gingerbread cottages lit up.

The entire place was dark except for the glow of those lanterns...
No other way to describe it...magic.
The full moon was even trying to be part of the party.
Just in case you wanted to see the hand-painted lanterns in the dark.

The crowd was reverent and fun if that is even possible...but yes, things that seem impossible are common place around here.

The crowds were full of joy and genuine wonder...
like we all were holding our own personal firefly.

We wandered and followed the light...never caring which direction we meandered - 
feeling like we were nestled in a cocoon of candlelight.

We walked our way back to our hotel and couldn't really let it go.
Laughing and smiling, it still felt like a dream.


I'm back now.

A seashell tucked into my purse right in the spot I can see it every day...
to remind me of the light in the darkness...
of dreams coming true...
of friendship and Somedays lived in the Now...
of books and authors and the magic of connection...
of beauty all around us.

Light the way.