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."

Coincidence?

Today my mom brought me out for a mani-pedi, a major indulgence that I was looking forward to all week.

My manicurist named Irish was such a joyful woman - she did her work super thoroughly and was really excited about the bright nail polish I brought in (a nifty OPI set I purchased in the middle of Vinnie's fight with cancer). We started talking about her kids, and her face lit up as she told me about them (including one set of twins) and how her 5 month old daughter now sleeps through the night. I said something to the effect of "wow, that's such a blessing."  She paused while filing my nails and her face clouded over.  That's when she told me.  Her six year old son has leukemia.

Leukemia? What kind? AML? ALL?

He has AML. Diagnosed at the age of six months, he's fought it this long with the help of the local pediatric state-run hospital. Unfortunately, the state hospitals in the Philippines tend to be woefully inadequate (they have decent private hospitals, but those are out of the financial reach of most people). You have to buy all the "extras" at state hospitals - food, medications, (chemo??) the cost of keeping you there... in the end it's quite expensive.

Plus she has five other children to look after.

To recover, her son needs a bone marrow transplant. It was unclear to me whether they can't find a donor, whether the hospital doesn't do transplants, or whether they just can't afford it. Either way, it looks bad. He's at home now to stay. She told me all this in bits and pieces and then I told her our story as well. We talked about feeding tubes, nausea, picky appetites, and low blood counts. We held back our tears, but just barely.

Her son sees angels now. I told her mine is with the angels. And when I gave her the tip, she literally fell to her knees in astonishment.  It was only around 50 bucks, small beans when you need tens of thousands.

I hope it helps. And I hope she knows that when we come to the end of our rope in the valley of the shadow of death, there's a hand reaching out to help us cross to the other side.

Mother's Day for the Not-OK

It's that time of year again.  Endless jewelry commercials on TV.  Flowers featured prominently in grocery stores. Greeting cards, teddy bears, and giant balloons all remind us that May is here.  Specifically, Mother's Day is upon us.

I did not want this day to come.

Not because I don't have a wonderful mom, (and mother-in-law!) which I do, but because two years ago I gave birth to a beautiful baby boy we named Vincent.  This year his birthday falls on a Tuesday.  But in 2009 he was born smack dab on Mother's Day, the best Mom's day gift I ever got.  And then lost.

Ever since Vincent was diagnosed with and then passed away from an extremely rare form of liver cancer, I have met many other families who have also lost children.  Cancer, car accidents, homicides, miscarriages, premature births and stillbirths - there are so many ways kids die.  And there are many bereaved parents out there, more than I ever deemed likely in our first-world country.  I found out that every year, between 80,000 and 100,000 children under 19 die in the U.S. (depending on the source).  That's a lot of bereaved parents, a lot of devastated moms.  I know one absolutely wonderful family that has lost three children, all shortly after birth.

Needless to say, Mother's Day is a difficult holiday for many women.  Some women have tried for years to have a baby, going through endless and expensive fertility treatments only to be continually disappointed.  Other families have faced tragic developments while attempting to adopt.  Still others have raised healthy children, only to see the relationship fracture over time.  I even have a few friends who for various painful reasons elected to have abortions early in their child-bearing years.

So as you celebrate Mother's Day this year, think about the friends you know who have experienced the loss of a child, the loss of fertility, the loss of an adoption.  If you know of a family in your church, workplace or community who has lost a child, please, let them know that you remember.  That you care.  Send them flowers or a card.  Write them a note or online message.  Whatever you do, don't tell them that their child is in a better place, or that it will all work out in the end.  Don't tell them to be happy.  Just let them know that you care, that you are honoring their child, that you remember what happened to their child.  Parents never forget.  So try to remember, for their sake.

And then they'll remember that you remembered.

Isolation (plus some tips for helping grieving friends)

One of the things I hate about grief is the feeling of being alone - that no one can understand you, no one can feel your pain, no one can share it with you.

And this is at least partially true.  No one person can ever fully understand another's grief, or the myriad of ways that they respond to it.  Dan and I have both been impacted in different ways by Vincent's death.  We've responded differently as well.  And that's OK.

Grief is isolating by nature.

But when grief is shared properly, it has the power to bring people together. I've seen this happen, but it requires a little risk on both sides.  I know some people don't want to talk about Vincent with me because they're worried about saying the wrong thing.  It feels risky for them to step outside of their comfort zone to address a grief that's larger than they've personally experienced.  (For the record, that doesn't help at all, to at like nothing happened. Of course I want to talk about it.)  What has helped, though, have been moments where people just looked into my eyes and said "We're so sorry you have to go through this" or "I can only imagine what you must be feeling right now." There are people who talk about Vincent with me, his life, his treatment, our grief now.  That helps a bit.

It's also a risk for the griever to allow the other individual to share their pain.  Just the act of opening up the wound to the other person is risky because of how they might respond.  I remember the Christian mom on a field trip with us who smiled at me after learning Vincent died, and said, "At least Theo won't remember any of this because he's too young!"  (awful on so many levels!)

So sometimes it's just easier to withdraw from people and grieve in seclusion.  But it's not as healthy, because I as the griever need to know that even though I'm walking this path alone, there are people cheering me on.  And it's healthy for you too, having grieving people around you, as it enlarges your heart and helps you be more thankful for what you have.  Plus, grieving enables all of us to identity more with the rest of the suffering world where awful stuff happens every day.  (Like what's going on in Japan!  Ugh!)

My husband Dan is very clever. He likes to comes up with these little witticisms, some of which are better than others.  (Sorry babe, it's true! :) After Vincent died, Dan said this - "The journey through grief is an unpredictable voyage, but the ship is more stable with many hands on deck."  Doesn't that sound like an ancient Chinese proverb?

Dan's right. Grieving in community can be better than grieving by yourself.  So next time we're hanging out, ask me how I'm doing.  Ask me about Vincent, about how his treatment went, about how his personality was and how much we miss him.  And together, we'll grieve for what's been lost.

Sowing Tears, Reaping Joy

Last week we attended the monthly Childhood Cancer Connection support group at our local children’s hospital.

I think it’s funny how I feel more at home with the people in this cancer support group (that I haven’t known that long!) than with practically anyone else I know.  I couldn’t tell you what each member does for a living or where they live, but I can tell you about their children.  I could tell you about about two beautiful teenagers who are no longer dealing with their failing bodies and treatment side effects. 

I could speak of kids and preteens and teenagers partying up a storm with heaven’s angels.  I could tell you about a handsome preschool boy who’s now making funny faces with Jesus.  I could tell you stories of valiant fighters, stories of kids who are taking their toxic treatments in stride, who are being strong for their devastated families, who are going to school and receiving chemotherapy at the same time.  I can tell you stories of relapse, remission, and recovery.  

And they know about my son Vincent.  I don’t need to explain anything to them, or be afraid of sobbing, or put on a happy face, or watch my language.  They have all looked death in the face and seen, if only in their imagination, life without their beloved children.  They have all faced the chaos of diagnosis and unrelenting treatment.  Some of us have seen our children slowly slip away.  Others have witnessed wondrous steps toward recovery.  No wonder we have an amazing bond.  

Our Childhood Cancer Connection group feels like a little bit of heaven.  It's safe.  It’s a place where you don’t have to have any “right” answers, where you can vent, cry, laugh, tease, plan, eat, celebrate and remember.  There is an aura of compassion and openness in the room.  

Shouldn’t our churches be like this?  Places where we can vent, cry, laugh, tease, plan, eat, celebrate and remember?  Has our 21st century Western church become so far removed from pain and suffering that it’s hard for us to know how to treat those of us in our midst that are hurting?  Our family was blessed to have individuals in our church that helped us carry our cross, and were with us every week until the end of Vincent’s life, but that’s more the exception than the norm.  

We laugh and cry easily at our group meetings.  We wear our emotions on our sleeve, and somehow, through the pain, we actually have fun.  How can we as believers (or nonbelievers) become more in touch with our pain, and through that, to our shared joy?  How can we tap into the communality of the shared sorrow of our human existence?  

Perhaps that’s the wrong question.  Perhaps the real problem is not that we don’t know how to tap into our shared sorrow but more that we’re unwilling to do it.  We don’t want to have our hearts broken.  We keep them safely guarded while we entertain ourselves with games, work, TV, food, sex, fashion, religiosity, Apple products (that’s me), and other good-yet-not-meant-to-be-ultimate things.  I’ve turned off the TV countless times to avoid hearing stories of devastation around the globe.  Why?  Because I didn't want to feel anything, and I knew if I watched it I would feel pain.  So I simply closed my ears and chose another activity.

So I don’t blame you if you don’t want to cry with me or with someone else close to you who is suffering.  Perhaps you can’t.  Perhaps you’re afraid that if your heart breaks your life will be ruined.  And it might.

But maybe if you’re willing to lose your life, you’ll find it handed to you instead.  Maybe, if you sow in tears you’ll reap in joy.  Maybe you will even weep all night.  

But when the morning dawns, so will joy.