Becoming Human

Oneing" is an old English word that was used by Lady Julian of Norwich (1342-1416) to describe the encounter between God and the soul. (CAC)

I stood over his pale, hairless body. His eyes closed, he shivered even though he was wrapped in blankets lying on a lounge chair in the warm sun beside the pool.  

 He was in agony and the morphine did nothing to ease him. I was helpless.

Aunt Jodi was visiting and had escorted my youngest daughter from Portland to California. This was supposed to be a joyful reunion trip for Jordyn, but her baby brother was unable to function. As a 11 year old, she was uncomfortable with his appearance, looking away frequently for fear of Really Seeing . Adults did the same.

When he left home, he had been ill, yes, but not like this.

Each of his three older sisters had already come to stay one at a time for a few days. There had been a day at Lego Land, the beach and other child-friendly venues, but the accumulation of proton radiation had finally taken its toll.

On Valentine’s Day 2005 Josh set his fork down on the restaurant table, looked up into my eyes, as slow sad tears trembled down his cheeks.

He could no longer eat.

Later when questioned, the radiation oncologist proclaimed, “Of course he’s in pain. He probably has fourth degree burns in his throat.”  These words spoken by the same woman who had assured me before treatment started that he would have little to no side effects from proton radiation. Had I misheard her?

Fourth. Degree. Burns. Inside. His. Throat.

Later, I sat in my dimly lit apartment shrinking into the corner of the couch as Josh slept fitfully in the other room. His tiny body dwarfed by a queen sized mattress.

Aunt Jodi had flown home. My husband and Jordyn were driving go-carts at a local track. Our desire was to create a memory of excitement and fun for her, but Josh’s disease weighed heavy and thick around us.

I nursed a glass of red wine. Maybe it was two. Alone.

I had never felt so alone before. The agony of watching my son suffer was overwhelming. He was wasting away before my eyes, unable to eat or play, he seemed more a shadow than my son. The consequences of radiation and chemotherapy was barbaric.

But in that moment, in that silent space of bleak misery, I felt astonishingly Alive. 

“So this is what it is to be alive”, I thought. Life and death tangible as one tiny human hovered between two worlds. This Mystery: to ache with deep pain and to be connected with the Divine all at once. I felt fully awake. 

I sat in that moment of  Solid Knowing, then it slipped away.

His birth had been traumatic. Unlike his four sisters, he presented face up. My crooked tailbone, damaged in childhood, inhibited his path. Pushing for four hours was futile.  I strained so much that I popped the blood vessels in my eye balls. I writhed on the hospital bed begging for a C-section. I was a mess.

Yet, in my core, I knew His Presence. It surrounded me. I saw His face. He knew my pain. He understood. Christ was in me and I was in him. We melded. Love engulfed me.

The hospital shift change came bringing with it a new OB GYN. He breezed in like a hero in a movie, handsome and confident. After examining me, he leaned close to my ear and whispered: “We can do this. When I say push, give 150%” and I did and he used his vacuum extraction tool and drew my son from me.

 Intense. Torment. Sacrifice. The Mystery of Oneness of God and Mother in suffering. A Miracle. 

“Jesus wept” is tattooed on the inside of my right wrist.  It is my reminder. Fully divine and fully human, he is Both And. He wept. His Passion. His Presence.

There is nothing hidden from the Divine. A Mystery beyond Time. 

Eleven years after I sat curled up on that couch in that grief-filled apartment with a glass of wine in my hand, alone, yet feeling so alive and carrying the weight of my son’s physical burden, I allowed myself to revisit that space again.
 
The practice of Centering Prayer invites me to sit in Presence, to be silent and listen and sometimes to ask. I re-entered that moment, fully in the emotion again, then I lifted up above and gazed down upon myself and my son. Watching.

“Show me what was, what I could not see” I whispered. 

Then I saw a golden mist permeating, swirling, and mingling. LOVE. I felt it. I had not been alone.

I had been sitting on Holy Ground. 

There is sacredness in suffering and purity in pain which ushers in a Mystical Oneness with Ultimate Mystery. We only need to be willing to look.

We are, after all, spiritual beings made in their Image. The Trinity. 

Relational. United. Community.  We are invited to participate as Spiritual Human Beings. 

Survivor's Guilt...

Not much is written about Survivor’s Guilt when it comes to cancer and chronic illness. When I think of Survivor’s Guilt my mind goes to war veterans or people who lived through 911 or Hurricane Katrina. I’ve discovered that Childhood Cancer is its own kind of traumatic event.

It’s been 11 years since I sat in that tiny, windowless room, where I watched the pediatric oncologist walk in, sit next to me and quietly say “It is round, blue-cell sarcoma. Your son has cancer.” 

From that moment until now, I've known the death of many children; children just like my son.  I have absorbed each death and carried it with me.  How could I not?  My son survived and their sons/daughters did not. Same treatment, same doctors, same prayers uttered to God. 

Therein lays my dilemma.

Instead of asking “Why me?”, Survivor’s Guilt asks “Why not me?”  I wonder what makes me more deserving than the other cancer mom whose child did not live. Now throw in the belief of a Triune God, who is touted as being good, and the randomness of which child lives and which child dies into the mix. 

I end up with confusion, guilt and an underlying feeling of unworthiness.

As I read about Survivor’s Guilt; hoping to understand my mixed emotions, I read: “ it piles on the unconscious thought that luck” (God’s goodness) “is a zero sum game. To have luck” (God’s healing) “is to deprive another of it. The anguish of guilt, its sheer pain, is a way of sharing some of the ill fate (God not healing the other children).  It is a form of empathic distress.”  The definition of Empathetic Distress is feeling the perceived pain of another person and transforming it into empathic anger, feelings of injustice, or guilt.

BINGO!

Subconsciously, I see God choosing me and my son, over the other moms and their children who did not live.  I am no more spiritual, good, or worthy of my son’s life than they are of their children’s lives.  And because God chose to heal my kid, I should (that shame word, again from my last post) jump up and down for joy and yet I can’t. If I celebrate my son’s life then it feels as if I am taunting the other mothers, implying my God loves me and my son more than them. And yet, I am so grateful!

It feels like a confusing weight and at times, I am tempted to disown God altogether.

I also read that Survivor’s Guilt possibly exists to help us find meaning and make sense out of the experience. This is what I want most: meaning and understanding.  Survivor’s Guilt can also be a way of expressing a connection to those who have died. This is undeniable to me. I feel very connected to each child I have known.  Most importantly, Survivor’s Guilt can co-exist with other feelings, like gratitude and relief.

Phew! It is ok to feel both.

In my Spiritual Formation class, we’ve been discussing how our western culture is an “Either/Or” mindset.  We don’t like paradox. It has to be one or the other. It is black or it is white. Eastern cultures, on the other hand, tend to be a “Both/And” culture. It is both this and that. This makes more sense to me, now. I feel both gratitude and guilt. My son lived. Their children did not. 

I carry their loss of life and my thankfulness for my son together. I always will.

As humans, we all have a skewed view of God (if you believe in God). We see things through our individual lenses.  I know Survivor’s Guilt has been a block for me with God. When I try to see God through an “Either/Or” lens, I want nothing to do with God. 

But when I experience God through a “Both/And” lens, I feel peace.

God is a mystery.  God is “Both/And.” I am made in God’s image; therefore, I am a mystery. I feel both grateful and guilty.

I chose to embrace the mystery. Gratitude and Guilt.

I should be...

I don't like the word "should."

It carries a feeling of inadequacy, 

a sense that something is wrong at the core.

It's a verb, 
used to indicate obligation 
or duty, 
typically when criticizing someone's actions.

"Should" is a shame word.

"I should be dancing with joy."

That's what I told myself when I woke 
on an August Tuesday.

Instead, 
a heavy sorrow pressed down upon me.

"I should be dancing with joy."

The tears came, 
unbidden. 

I dressed, 
and took care of my responsibilities. 

Moving through the morning like a robot, 
I forced my mind to stay up-top,
surface level thinking only.

"I should be dancing with joy."

I sat in the dark room 
while the technician in training 
moved the ultrasound wand 
across my son's chest.

His pulsating heart displayed on the screen, a rhythmic black and white shape 
with occasional gushes of red and blue.

The pregnant senior technician 
sat in restless discomfort 
voicing tips 
and words of encouragement 
to the student tech.

My son lie quietly.

I focused on the screen.

"I should be dancing with joy."

"Damn!" 

"Here come tears again."

Quickly,

silently, 
I exited the room,

allowing emotion to overwhelm me,
only when I was safe in the tiny, 
hallway bathroom.

"I should be dancing with joy."

"God had healed my son, right?"

"I should be dancing with joy, 

my arms lifted up, 

praising God."

"That's what a Christian should do."

"That's what the world wants, 
inspiring stories of survival."

"Everybody loves a happy ending."

"I should be dancing with joy."

We sat in the clinic room, 
my son now giant on the examining table, joking with the doctors and nurses, 
and never flinching with the blood draw.

We talked of chronic pain, 
the tracheotomy,
the upcoming sleep study, 
the medicines, 
fertility, 
school and activities. 

10 years ago, 
he took his last chemotherapy.

10 years ago, 
he was five, 
frail,
and bald 
walking on wobbly legs.

10 years ago, 
he was fed through a tube 
and never ventured far 
without his suction machine.

10 years ago, 
he had no eyelashes.

"I should be dancing with joy." 

10 years ago, 
I couldn't fathom being in this place. 

I had envisioned us hosting a huge celebration, 
filled with laughter 
and friends 
and good food.

10 years ago, 
I thought I would feel ecstatic, 
joyful, 
barely able to contain myself. 

"So how does it feel to be at this place in time?" a friend asked.

Without hesitation, I answered:
"It feels like a lot of children are missing" and the weeping of collective loss enveloped me.

"I should be dancing with joy."

When I look at my son,
I do not see his future.   
I literally see nothing,
a black void.

I cannot conjure up a vision of college, 
or marriage, 
or children.
  
I have carefully constructed a wall of 
"no expectations" to protect my heart.

So if one day, 
a stroke came, 
or throat cancer, 
or trachea cancer, 
or thyroid cancer, 
or skin cancer, 
or a secondary sarcoma,
or if heart problems developed,
 or kidney issues,
or if he discovered infertility,
or his neck was injured and he became a quadriplegic,   
I will be immune to the pain, 
the loss, 
the grief, 
because 
I will not be surprised.

Or so my theory goes... 

But there is a permeability to my 
"no expectations" wall, as well.  

Indescribable joy may seep through, 
as his moment by moment future unfolds,
perhaps it will include college, 
or marriage, 
or children
 or even long term health.

Solid yet porous, 
my wall's fortification is crucial to survival.

"I should be dancing with joy", 
but "should" is a shame word
and I do not do shame. 

Not anymore...

This was written in memory of: 

Gage Dole, Jackson Hill, 

Lezli Foster, Rachael,

Danny Keagbine, Brad Ventura, 

Libby Shriver, Joshua Truini, Jeremiah Weingrod and many more.

This was also written with thoughts of those who are still alive and struggle daily:

McKenna Matteson, Madeleine O'Brien,

Rebecca Adams, Tony, Sam Day, Aly Cat,

Ryland Lampert, Justin Lambert,Faith,

Conner Leigh, Kate VanNice,Carly, 
Aaron Robinson,Spencer Shores

and many more 

and all the ones to come.  

The Ghost of Mother's Days Past

My very first Mother's Day was May 10th 1987.

We went to church that morning.

A couple we knew, came in with their new baby girl.

Overwhelmed with sadness 

I excused myself and ran to the women's restroom to hide.

I stood alone crying.

My baby girl was 2 months old in the Neonatal Intensive Care Unit.

She'd been there since her birth, March 3rd.

By Mother's Day, she weighed 2 pounds.

Oh how my heart ached to hold her, 

to bring her home, 

to show her off at church.

Mother's Day touches deep emotions of pain, guilt, loss and heartache, 

even though we try to put on happy faces.

I did a little research and discovered that 

Anna Jarvis campaigned for Mother's Day 

as a way to honor and pay tribute to mothers. 

It became a holiday in 1914,
but horrified at what it became;

she spent the last years of her life trying to stop it.

In her mind,
it became a commercialized, 

consumerist monster.

She never married, 

never had children 

and died alone and broke.

What a sad legacy for a holiday supposedly honoring mothers.

Mother's Day arrives and there are those of us,

 who ache to have children, but can't. 

There are those of us who have lost our own mothers.

There are those of us who have lost our children.

There are those of us whose mothers were anything but motherly.

How then do we celebrate Mother's Day?

I sat across the table from my dear friend, Becky, last Thursday.

We are real with each other and I love that in a friend.

She's had great loss in her life and isn't afraid to share it.

She asked me how I was going to deal with Mother's Day this weekend.

"Fine!" I glibly answered.  "I've already done my crying."

And I showed her the necklace another precious friend, Jodi,

had given me in honor of my mother,

who passed away in 2012.

"I cried when she gave it to me" I said.  "So I don't have any tears left."

Foolish words.

I miss my mom, she was my biggest fan.  

I miss my grandmother, 

who left me a legacy of strength.

I've had many wonderful years of  Mother's Days in the past.

Breakfasts in bed, 

carried in on wobbly trays by little girls 

with smiles as big as the world.

Handmade cards and ceramic gifts, 

lovingly crafted, just for me.

Treasures. 

Moments I cherish.

I hang tightly to them, 

because in the blink of an eye they are only memories.

Last night, we had our very first paying guests 

stay in the House in the Trees in our backyard.

They were a sweet family with 5 children.

I visited with them a bit while they ate their dinner.

Later, when it grew dark,

I secretly watched them sit around our fire-pit, 

playing guitar,

singing, laughing together. 

They reminded me of my family about 10 years ago.

"What a gift God has given us with the House in the Trees", 

I thought.

"It's a sacred place."

And then the tears came, 

the wave of grief smashing into me,

knocking me down,
pulling me under.

Cancer ripped those innocent, 

lovely days from my grasp.

Cancer in my four year old son in 2004 

was the moment

our way of life ended forever,

like a thunderbolt.

It's a loss so fathomless and sharp, 

I find it hard to even put into words here.

Those years of  young children, 

sweetness, laughter, and energy, 

all together in this house,

are gone,
prematurely snatched away. 

And they will never come again.

This Mother's Day, 

some of my children are spread across the globe: 

Britain, Ecuador, California, Vancouver.

And I miss them.

This Mother's Day my oldest daughter,

the tiny one who spent four months in the hospital when she was born,

is hosting a Mother's Day Brunch for me and her mother-in-law, Sharon. 

We are being honored!

How do we celebrate such an emotional, 

sometimes hard to navigate day?

We allow ourselves to grieve,
keenly.

We allow ourselves to sit in the sorrow,
for a time.
And it will pass.

But we also allow ourselves to feel joy,

powerful,
intense,
grateful joy.

Happy Mother's Day! 

It's 2015! Happy New Year!

I'm sitting alone on my sun drenched couch sipping my morning coffee.

It's the first day of  2015.

I'm alone because my entire family is still sleeping 

after reveling until the wee hours of the morning 

with friends and family.

It was a wonderful party.

I look around at the glitter and sparkle strewn about along with popcorn and chips, 

cold brie and cold mulled wine resting in the pot, 

sticky spots on the floor where drinks were spilled

and it's quiet.

The laughter and noise from the previous night still reverberates in my mind.

I breathe deep.

I looked through the pictures on our camera from our makeshift "photo booth", 

smiling at the silly poses and props.

It was a multi-generational party with friends our age, 

friends our adult children's ages and Josh's 14 years old friend.

It was a smashing success.

Literally. 

And I have video to prove it:

Josh and Christian smashing our Halloween pumpkins 

(yes, we still had pumpkins sitting around saved for just this ritual) 

with the Samurai sword Joy forged for him a few years ago.

We're nearing the end of our "stay-cation" now;

that is to say,

we've all been together, 

living under the same roof for 6 days.

And it's worked.

We still love and tolerate each other!

My children are amazing people 

and they've chosen their spouses, 

boyfriends, 

and friends well.

I'm learning to let them go.

And I wonder what 2015 will hold for each of us.

As I crawled into bed last night I felt apprehensive.

I'm not sure why.

Maybe it's because we've gone through tough times in years past.

There is no guarantee and I have no control. 

Maybe it's because I feel a little lost and directionless.

What do I do now with my life?

Maybe it's because of my age.

I look a little too middle aged in those silly New Year's pictures. 

It's hard work for me,

to separate from mothering, 

parenting, 

letting go.

I grew up believing that education wasn't important.

The highest calling was to be a mother and wife.

And for almost 28 years I've been raising, 

directing. 

educating, 

parenting my children.

That's been my identity,

my role,

my value.

And as that role dissipates,

I find myself a little lost,

unsure,

feeling as if I'm standing on shaky ground.

What next?

Maybe it's time for education.

Maybe it's time to become something...

MORE.