Mon bébé

Last night I stayed up late for hours
restless, surfing the internet
reading odd news stories, viewing children's crafts
bone-tired but not sleeping
I think I was searching for you

Downward Mobility

When my son Vincent was diagnosed with liver cancer back in June 2010, my primary goal was to keep life as 'normal' as possible.  I wanted only to get through his treatment and forget it ever happened.  After all, terrible things like childhood cancer don't happen to our family.

Yes, I was experiencing massive amounts of denial.

As we spent week after week in the hospital, I frequently noticed posters advertising the start of a new support group for parents of children with cancer.  Though I initially resisted the thought of hanging out with "the cancer people," our family was thrust into a group of precious individuals well-acquainted with grief, disappointment, and tragedy.  Since attending our first group meeting last year, we have participated whenever possible.  This year alone, two families from the group have watched their children die.  One passed away just a few days ago.

Belonging to a grief-filled community means abandoning the luxury of ignoring life's inherent risks and dangers.  It means admitting fragility and powerlessness over tragic events that shape our brief lives on this planet.  Before Vincent's diagnosis, I belonged to a privileged slice of society whose main worry for their little children concerned where to send them to school and whether or not to vaccinate.  Our family was well on its way to achieving comfortable American middle-classdom.  I held a stable position in church leadership, my husband was completing graduate school, and we were enjoying the development of our two young sons.

One year later, here I am with no job, one less child, and discouraging prospects for the immediate future.  I'm currently a stay-at-home mom to my fragile four-year-old, bartering music lessons for discounted preschool and holding garage sales to pay utility bills.  Much has been lost.

And yet, there remains unlikely connectedness and community in the midst of pain.  We are not the only grieving family.  We recently stayed six weeks in the Philippines where loss and death are all around, homelessness and starvation just a typhoon away.  In a world rife with suffering, our afflictions bring us closer to the life of deep awareness and trust.  Who has time to chase after a bigger house or nicer car when your child is intubated at death's door?  When someone you love passes away, it doesn't matter which name brand you're wearing or what kind of status bag hangs on your shoulder.

For me, participation in a pain-scarred community means living authentically, surviving on faith.  It means caring more about time spent with others than money earned for myself.  Vincent's illness changed my life, not just because he died, but because we are now part of a global community of people who live tremulously. I can no longer presume security and entitlement.  I'm starting to surrender my demands for control, opening my heart to a more simple way of life.  This last year has seen our family begin the path of downward mobility.  Each loss brings a greater appreciation for life's fragile beauty.

I'm reminded of Jesus, our servant king, who willingly chose a humble path marked by sorrow. Scripture says he emptied himself of the glories of heaven in exchange for the poverty and vulnerability of human flesh.  "Foxes have holes and birds of the air have nests, but the Son of Man has no place to lay his head..." He left behind a joyous relationship with his Father to be part of a flawed human family.  He gave up the wealth of heaven to eek out a living as a carpenter, losing celestial perfection for the brokenness of human society—quite an exchange!  He died a criminal's death in order to become the world's greatest hope for peace and reconciliation.  In choosing the downward path at an inestimable cost to himself, he fully identified as one of us, a wounded brother.

Our hospital's Childhood Cancer Connection support group has been a tremendous gift this past year.  I never thought I'd want to be part of a community formed in the shadow of sickness and death.  Ironically, the group continues to enrich me with a greater reverence for life, anchoring me in a context of shared experience, reminding me of what matters most.

There is still a long way to go on this downward path.  I struggle with entitlement, bitterness and anger.  I want more and more things, believing I deserve them for having lost my child.  I often forget how the call to follow Christ is a call to pick up my cross. The smaller and emptier we are, the more space remains to be filled with God's Spirit.  Even though the abundant life is marked with sorrow, it's also punctuated by divine joy.  As John the Baptist once said, "He must increase, and I must decrease."

It's the Little Things

In grief work, it's always the little things that trip you up.

People who have lost a loved one often talk about how they'll be someplace innocuous like the grocery store, when suddenly as they're picking out produce or rounding a corner they catch a glimpse of an individual who looks like their lost loved one.

Of course, it isn't, it never is, but in that split second of almost-recognition, the emotions are so strong they can make your heart skip a beat, make you sob out loud. In a heartbeat you go from being OK as you're picking out milk to being close to losing it, throwing the milk, yelling and howling. Most of the time this doesn't happen. People shove their emotions into some hidden inner place, catch their breath, and continue on as law-abiding citizens, which I guess is often a good thing for the rest of us.

But sometimes the grief can sweep over you with such force that you can't not cry, right there in the shopping mall, library, gym. I have friends who throw plates when things get bad. They all go outside and toss them through the air in their yard. I can imagine that would be pretty cathartic (except for the cleaning-up process!)

Unfortunately in our society, people who are grieving don't have many opportunities for public mourning. Sure, our culture has rituals like holding a memorial service, a viewing of the body, and a burial/scattering of ashes. But that's about it. Most of those activities take place within a few weeks of death, sometimes up to a year. That's pretty short considering you still have to live the rest of your life without the person you lost.

Or what about people who are grieving the loss of a relationship, job, health, the loss of status or safety or the death of a dream? There is nothing, no rite, no standard method of grieving through these losses, much less an acceptable way to publicly broadcast grief. Even many of our churches view grief as something to privately finish, to overcome, to get through. By in large, we are left to fend for ourselves.

I've noticed that for many individuals, including me, observing people exhibit "negative" emotions in public is unsettling, scary. We don't feel safe. Why is this? Is this because we are so afraid to face our own inner darkness, our own sadness, our own disconnectedness that we don't like to see it in others? Do we not want to be reminded that it could be our turn next? It's tough because those of us who are grieving have to mix with the rest of society—we still have to get out of the house and do basic things like attend school, go grocery shopping, and show up to work. We usually look pretty normal until almost anything, anywhere can become a portal to a painful or precious memory, a vivid reminder of what we've lost.

I was talking with some people in the car the other day about what happens when you sleep—how your eyes physically roll up back into your head. My sister remarked on how she's developed some mild sleep anxiety due to this semi-disturbing fact, I can agree that it's definitely not the prettiest mental picture to have as you're drifting off to sleep.

Then I thought of Vincent, how as he died his little eyes stayed half-open for days, how they never rolled back, but just gradually lost their sight as he drifted further and further from us. I cried in the car on the way to the shopping center, then pulled myself together when we got there.  Because you should never cry in public. People might think there was something wrong.

-------------------------------------------
Why do you think it isn't acceptable for people to show emotions like sadness or anger in public? Have any of you had an experience where you saw an otherwise normal looking person exhibit some strong emotion? How did it make you feel?

Vertigo

Walking down the stairs to get a drink of water last night I experienced a sudden furious attack of vertigo. I've been diagnosed and treated for this before, gone to the ER when the dizziness was so extreme I couldn't keep down enough liquids to stay hydrated.

On the stairs last night I had to stop walking and as I closed my eyes and clutched the railing I envisioned the tile flat beneath my feet and the walls rising straight up to meet the ceiling. When you have an attack of vertigo it's like spinning uncontrollably under water. You have no idea which way is up.

Much of this past year since losing Vincent has been like that - events careening out of control, feeling helpless, submerged, disoriented, powerless. At some point in time I have to believe that the path is smooth before me, that the spinning in my head will stop. I have to trust that my feelings don't have the final say, that it will get better, that one day I will realize which way is up. Until then I'll keep moving, swimming up toward the light, walking slowly while putting one foot carefully in front of the other. Trusting, even when it feels wrong.

Prayer for Help

God,
When words run dry
fill my mouth with your speech
When patience evaporates
flood my will with your strength
And when my faith wavers
pour in your hope
In the name of Him who turned water to wine and calmed the raging sea,
Amen.

Grief Journal, Night Owl

These days I've been staying up way too late.  Sometimes I sew or work on writing.  Mostly I read or occasionally watch TV.

Even when Vincent was alive I was a night owl.  I'd put him and Theo to sleep, then sneak out to read, study, or sew, usually until the wee hours of the morning.

The day before Vincent went into surgery I stayed up the entire night sewing a bag.  It seems so ironic that I can, at this moment, see it through the open closet door in our room, hanging next to articles of clothing I've owned for years.  How can I still have the same clothes as last year, the same ipod, the same hardly-functioning cell phone, and not have my child?  Isn't it supposed to be the other way around?

Right now I'm sick again.  Coughing, swollen glands, sore throat.  I'm exhausted.  But I just cannot get to bed.  It's not that I can't sleep.  Sleep usually comes pretty quickly, and when it doesn't, I play solitaire on the ipad until my eyes blur.  Falling asleep isn't a huge issue for me.  What is incredibly difficult is simply the act of getting to bed.  I. just. can't. seem. to. do. it.

Perhaps what I am afraid of is that Vincent will somehow come back, but I'll be sleeping when he knocks at the door. Or perhaps I'm subconsciously dreading the advent of the next day, so I'm staying up super late to prevent it from coming?  Maybe I don't want to have nightmares about his last moments.  Or perhaps I enjoy staying up late and want to have some fun before the next day arrives with all its responsibilities.  Maybe the real reason I find it so difficult to go to bed is a little bit of all of the above.

So I'm off.  To bed.  Before I cough up a lung.

Or maybe I'll watch The Amazing Race instead.  Hmmm....

The Griever's Prayer

As feelings of pain and anguish build
may I welcome them with an open heart,
knowing that they are but invitations to grieve with You,
our Suffering Servant.

May my wounds not embitter or isolate me.
Instead, may they enlarge the walls of my heart
to embrace those in the world around,
the angry, bitter, forgotten, isolated, and wounded.

May my pain lead me to participate in God's pain,
And through that, to share in His glory.

Amen.

Lost

Do you ever feel lost?

These past few days after returning home from Chicago I have been struggling to find my equilibrium. I'm not functioning at a high capacity, I can barely get things done, and living in our house is getting increasingly hard for me.  I might need to move.  I'm angry.  It's hard to breathe without crying.

I need to get away.

That's funny, I just got back!