Friday, May 15, 2015


Since Zachary died, people often tell me -- 

I can't even imagine.

It's validating to hear my very real nightmare acknowledged.  I appreciate the sentiment because it is absolutely the truth.  One simply cannot know what it is to have experienced the tragic and traumatic losses I have endured, cannot understand their impact on every facet of life, without having lived them.  And, declaring inability to imagine is much preferred to those who have the audacity to claim they can understand my loss and my grief, when they actually have no clue.  Believe me, that has happened too. 

I believe the basic intent behind the statement is most often to comfort and support me..., and intent is huge in the context of profound loss and, so often, vacuous words.  Yet, I often hear something else in those words, emanating from the depths of the subconscious where ego and fear and self-preservation exist.  Sometimes I recognize, in a flash, that the statement is not about me and my dead children at all, but rather --

I am so glad it wasn't me, wasn't two of my children.  I don't even want to think about it.   

I suppose it's human nature.  We never really entertain the idea that our own children might die before us.  We think those kinds of things happen to other people, not to us.  We stick our fingers in our ears, close our eyes and sing "la, la, la, la, la" to drown out the frightening possibility.  We want to hold on to the belief that our family is safe.  We want to believe our planning, our acts of prevention and hyper-protectionism will do the trick.  Many of us pray for the health and safety of our children - prayers, we have rationalized, God readily hears and answers.     

We turn off or ignore the television news because there are too many innocent children being gunned down, in neighborhoods usually far from our own.  We prefer sending in our money to a non-profit or aid organization rather than coming face to face with a child's suffering or death.  We change the radiothon station when the bereaved parents come on to talk about their child who fought and "lost" his battle with cancer.  The thought of a cherished son, dying in a hospital bed, in the context of modern treatments and a conscientious loving family, is intolerable for us.  We don't want to acknowledge it could have been us.  We retreat back to our own orderly lives, where things are humming along sufficiently well, where plans generally materialize, where children are alive and well. 
In his memoir The Book of My Lives, which is brilliant by the way, author Aleksandar Hemon remembers interacting with people when his nine month-old daughter, Isabel, was suffering with a rare brain tumor, from which she ultimately died:

When people who didn't know about Isabel's illness asked me what was new, and I'd tell them, I'd witness their rapidly receding to the distant horizon of their own lives, where entirely different things mattered.  After I told my tax accountant that Isabel was gravely ill, he said: "But you look good, and that's the most important thing!"

So, what if you are unable to ignore or suppress the truth about child death?  What if what cannot be imagined is, in reality, your life?  What if you have a terminally ill, or dead, child?  What if, against all odds, you have two, or three or more, dead children?  What if your family's story of child death is so horrific that no one wants to acknowledge it or to ever be reminded of it? 

You walk around wearing a mask, politely avoiding the topic no one cares to talk about, but which presses on your soul incessantly: your gravely ill or dead child(ren), your grief.  When you interact with people, you stick with topics they are comfortable with.  You keep your miserable story, your ugly emotions, hidden so that no one has to be reminded that children die, that your child(ren) died.  It is exhausting work, an exhausting act to keep up, especially as you adapt to it.  I believe it is one of the most humiliating and isolating things about living the life of a bereaved parent.  Not only does your child(ren)'s memory fade into the oblivion of absence and other peoples' discomfort and fear, the grief you carry becomes conveniently and almost entirely, invisible.  For the sake of preserving the mirage of life's orderliness for people not directly affected by unimaginable tragedy and grief. 


B left yesterday morning for a four-day work trip.  He will run into people he sees only once a year, usually at this conference.  He decided not to attend last year in light of Zachary's death and so this will be the first time he has seen many of these colleagues since before Zachary was part of our lives.  Spouses are invited (although I decided not to attend, again) and so, for the social aspects of the trip, there will be plenty of cocktail-style chatting about life and family, in addition to work. 

Imagine the conversation starters. 

How are the kids?  Remind me, Brandon, how many children do you and your wife have? 

We didn't see you last year.  What's new?

Where is Gretchen?

As he was packing to leave, B told me he was anxious about the trip, about his ability to float around the light conversations of the weekend, with Zachary's death and his grief as constant companions.  And, knowing the way people tend to react, getting through it without slinking into the depression of disillusionment.  It is precisely the reason I am not attending.  

B is carrying Zachary's photo, his comb and his ear muffs (used to drown out the sound of the oscillating ventilator when he was battling the infection), in his pockets, like he does every day.  No doubt, he will have plenty of opportunities to bring Zachary and our new reality into conversation.  There will be no way around it.  I wonder if someone, just one person, will dare step out of their own orderly reality, for just a few minutes, and imagine a sliver of his. 

Thursday, May 7, 2015

Milestone in a box

I have feared this day for a couple of months now.  Yesterday afternoon, Zachary's trunk was finally delivered to our doorstep.  Just slightly bigger than a box which might have held Zachary's casket, it sits unopened in our foyer.  B and I agreed we would wait until the three of us are together, with some intentional uninterrupted time, to open it. 

I know how this works.  We will inspect the trunk, our fingers will trace the inscription of his name, his dates, his painfully short story, as if this were his headstone.  There will be tears and another cruel jolt of finality, the kind that no parent or (young) brother should ever have to feel, but that we live with,... now, times two.  The next logical step will be to go through Zachary's things and place many of them carefully, one by one, in his trunk.  We will pick a time to do that.  Together we will debate what goes in and where it gets placed, reminding each other it can be opened, contents shifted and snuggled, whenever and as often as we choose.  And then, we will shut the lid.  

We will shut the lid, again, on our senselessly dead boy. 

Instead of a wispy haired, sixteen month-old toddler running around with a sippy cup, instead of the giggling, squirming, pulsing with life, presence and personality of our Zachary, we will have a box.  The stark contrast is never lost on me.  This is not what I planned to do on the day that marks sixteen months from my son's birth. 


It's the neverness that is so painful.  Never again to be here with us - never to sit with us at table, never to travel with us, never to laugh with us, never to cry with us, never to embrace us as he leaves for school, never to see his brothers and sister marry.  All the rest of our lives we must live without him.  Only our death can stop the pain of his death.

A month, a year, five years - with that I could live.  But not this forever. 

I step outdoors into the moist moldly fragrance of an early summer morning and arm in arm with my enjoyment comes the realization that never again will he smell this.

As a cloud vanishes and is gone,
     so he who goes down to the grave does not return,
He will never come to his house again;
     his place will know him no more.
                                   Job 7:9-10

One small misstep and now this endless neverness.

~ Nicolas Wolterstorff from his book Lament for a Son

Tuesday, May 5, 2015

The magic is gone

On Friday, we returned home from a trip to the most magical place on earth.  

For five days, with intentions of a good time for C.T., we were inundated with Disney's attempt at manufactured happiness.  Which is actually a pretty brave (or stupid) thing to subject oneself to, in our situation. 

With some planning, our days at the theme parks were essentially scripted on autopilot.  An app on our phones ushered the three of us from fast pass window to dining reservation to parade or firework display.  We waited in lines, donned our ponchos when it rained and walked until our feet ached.     

The rides and shows were, for the most part, entertaining and somewhat distracting.  Except that I couldn't stop crying as we rode Soarin'.  The simulation of hang-gliding over California was truly realistic: the surround sound of the gentle river rapids, the pine-scented breeze, the vibrancy of those orange groves, the instant your mind believes you will actually dip your toes in the waves of the pacific ocean.  The assault on my senses was simply too much to experience when Zachary will never see or hear or smell the California landscape, simulated or otherwise. 

It was all forced fun, triggered by artificial means, but I think we did okay.  I am proud of us for trying. 

It was all the many in-between moments that were the most difficult.  Each monorail or bus ride seemed to involve sitting directly across from families that look like ours should, or like the life we had for the two weeks that Zachary was alive (when just one dead child was our invisible family story).  There were older brothers holding littler ones for candid photos or to allow curious eyes to see out a window or up and over some obstruction.  When I see C.T. studying these now unobtainable brotherly interactions, I can hardly bear it.  Overheard casual conversations amongst other families often highlighted the unfathomable ease and confidence with which others are able to live.  One grandparent, holding her three or four year old grandson while looking at an unrelated baby girl, exclaimed, You're going to have a baby sister soon too, aren't you?  And, as it does for most people, her expectation will become reality.  The pregnant belly of her daughter will materialize into a healthy little girl who will not die, who will grow up before their eyes.    

As we walked through the parks, we bypassed the many photo opportunities staged throughout, where happy families presumably capture and then upload glimpses of their magical time to one of many social media sites.  As I looked through the few photos we took on our own during the trip, mostly one of us with C.T., the brokenness in our half-smiling faces is absolutely undeniable.  The weight of Zachary's absence has permeated our physical existence, even our public personas captured in photographs.  Wherever we are and whatever we do, we seem to drip of grief and brokenness. 

The whole trip was dull and muted for B. and me, overshadowed by the fact that Zachary is still dead while we must go on with our lives.  I think some part of me hoped to be won over, even if only artificially and temporarily, by Disney's magic.  I was able to be swayed in years past, when C.T. was here and B.W. was not.  I suppose the saying Fool me once, shame on you; fool me twice, shame on me is spot on.  The magic is truly gone for me.      


When we returned home on Friday, I caught C.T. inspecting the "trap" he set around Zachary's hand and foot molds, checking to see if robbers have been pricked and deterred by the tacks he left, pointy side up, in front of our precious artifacts.  His eyes, level with everything on display, landed briefly and patiently on each photo of Zachary, on the frame that houses B.W.'s hand and foot prints.  After he deemed everything was in tact, C.T. reached in carefully to stroke the bottom of the cold, hard, chalky mold of Zachary's foot. 

I swallowed hard, submerging what might have materialized into an exhausted sob.  It is still hard to understand that this is our welcome home, that making memories together does not, will never again, include Zachary.