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.   



    

Timing is everything

Today marks fifteen months since Zachary's last breath.  One and a quarter years already.   

C.T. told me, plainly, while brushing his teeth this morning, that July 20th will be eighteen months.  From the minute we told him Zachary was going to die, he has been obsessed with the days and dates of his brother's short life.  He will check in with me from time to time, confirming he still knows the timing of significant events...  They started giving Zachary those antibiotics on Wednesday, right?  You thought he was getting better on Friday the 17th, but then they told you he had the brain bleed the same day, right?  He is still angry that we weren't able to tell him about Zachary's prognosis, and the plan to remove his life support, until Sunday.  C.T. is still trying to piece it all together, to grasp how his very real brother was doing great but now sits in ashes on our bedroom dresser.     

I had a rare dinner out tonight with a few bereaved mothers from my support group and wasn't home for the evening routine.  C.T. yelled out for B, just after he had been tucked into bed.  He was crying as he uttered the question he has asked again and again, the one for which the answer is simply too late for meaningful remedy,

Daddy, would Zachary still be alive now if the doctors would have done something sooner?  When mom knew something was wrong?

B held him and they cried together because that is all we can do.  The price we have collectively paid for the decisions and omissions and delays, for the situation being just short of a close call for Zachary, is astronomical. 

Cornered

Sometimes the emotional cacophony of my grief is too alive, reverberates too intimately, to write with confidence.  Instead, I have devoured three poetry books in the last week. 

This one is haunting, for me, in its calm turned desperation.            

Corners

by (U.S. Poet Laureate) Kay Ryan

All but saints

and hermits
mean to paint
themselves
toward an exit

leaving a

peasant ocean
of azure or jonquil
ending neatly
at the doorsill.

But sometimes

something happens:
a minor dislocation
by which the doors
and windows
undergo a
small rotation
to the left a little
-but repeatedly.
It isn’t
obvious immediately.

Only toward evening

and from the
farthest corners
of the houses
of the painters

comes a chorus

of individual keening

as of kenneled dogs

someone is mistreating.

None of our planning, none of the doctor's lame assurances, none of their insistence that I was overreacting, none of their delayed interventions, could interfere with the tiny propulsions away from Zachary's beautiful future.  Those incremental shifts pushed his brain to the point of hemorrhage.  Cornered him, dead. 

Unexpected

One of the neighbor boys, who is now in eighth grade, recently took his entrance exam for the college prep school he will attend in the fall.  The essay portion of the exam he took asked students to identify and discuss someone who has had a meaningful impact in your life.   

He could have chosen anyone.  A parent, grandparent, aunt or uncle.  God.  A coach or teacher.  An author, musician or sports figure.  Someone he looks up to, someone who inspires him. 

He chose to write about Zachary.  Yes, my Zachary.  When his parents asked him about the exam, he explained how he wrote that Zachary taught him about life's frailty and to never take his siblings for granted.  His mother told me a few weeks ago and I wanted to collapse with gratitude in her arms.  

I long to hear Zachary's name on the lips of others.  I want to know that he is loved and missed, that his life was and is significant to others, even while it was miserably and painfully short to his immediate family.  To know that this (then) seventh grader was deeply affected by Zachary, so much that he chose to write about him over other meaningful influences in his life (and over a year after Zachary's death), touched my grieving heart.     

Hiding

But mostly what I did was hide.  I hid from people who maybe didn't know what had happened.  One day, Sam and I were in CVS and we saw a woman whose daughter had played soccer with Sam when they were both about four years old.  Her younger daughter was named Grace and was the same age as our Grace.  Sam stopped playing soccer after a year or so.  I hadn't seen the woman since.  But now, here she was in CVS with her daughters, her Grace.  I crouched behind giant rolls of paper towels.  I ran up an aisle as she entered it.  My heart was beating fast while the sound of her voice floated across the store.  Sam held my hand tight, unsure of why I was acting this way.  He was getting used to my hiding.  The week before I had hid behind my car to avoid a woman I knew pumping gas across from us...

I hid from everything. 

~ Ann Hood from her memoir "Comfort"

*****

I have been hiding since Zachary's death.  B and I haven't been back to our favorite restaurant.  I never returned to my exercise classes (and the instructor who was pregnant with her daughter at the same time I was pregnant with Zachary).  I haven't set foot in our neighborhood grocery store..., B has taken over that responsibility.  Only on the rarest of occasions, and only after carefully considering crowd levels, potential triggers and my emotional stability, do I go into town.  One time, I coaxed myself to the downtown library for C.T.'s sake, something I used to do with him almost weekly.  I walked in and immediately marched us back out upon seeing someone I used to know and be friendly with, who may or may not have known about Zachary.  I just didn't have it in me that day to face her and tell her the story, to tell her we had another son, and then, that he became ill and died.   

People hide from us too.  We feel it.  From the moment Zachary's prognosis turned grim, some of the hospital staff began avoiding us.  When I posted to Zachary's caringbridge site that he had died, several people sent a quick I'm so sorry message and then, just as quickly, disappeared altogether.  There were the many school moms who ignored me, ignored that fact that Zachary had existed at all, as soon as I returned to my drop off and pick-up duties.  And now, there are the people in our life who hide more subtly..., by forcing only sunny interaction with us, by refusing to say Zachary's name aloud, by failing to ask (genuinely and with time and space for us to actually respond honestly) how we're doing, by essentially avoiding us until they perceive we are ready to roll with the good times again. 

The hiding I do now is fraught with layers of complexity and history.  I remember when we lost B.W., how excruciating it was to readjust to being out and about, to re-engage with people who couldn't comprehend my reality.  A new dentist I saw, upon seeing my health history, greeted me with, So, I see you had a little "mishap" in October of last year...  The death of my first son, followed by birthing his corpse - a little mishap?  I should have slapped him.  There were people who couldn't contain their curiosity about how B.W. had died.  A co-worker said do you think he died because you're too skinny to carry a baby?  A woman at church told me my blood clotting disorder, which had been identified as the probable cause of B.W.'s death, was not what killed him.  She assumed her 30 minutes of investigation brought to light something of substance, assumed we were clueless and hadn't already pursued answers for months on end.  I remember all sorts of insulting platitudes.  A former boss at work said something like well, at least you didn't get to know him.  Oh, right, because the last thing I wanted, in becoming a parent for the first time, upon seeing the human son I'd grown inside my body, was to know him.  People were always telling me I was still young enough to have more, as if that would cure me of my grief, as if B.W. had been nothing more than a mistake or failure, some *thing* to be replaced.  

But the most damaging external personal assaults after B.W.'s death came from some of the people closest to me.  I am certain many of these instances are completely unknown to the offenders, who simply could not fathom the depth of my loss.  In most cases, I did not have the strength to tell them and then brace for their unpredictable response.  Others were too blatantly hurtful to continue the relationship at all.  At about nine months out from B.W.'s death and birth, one of my closest friends, who I'd known since I was in first grade, completely gave up on me after I ducked out early, in tears, from a street fair she had invited me to.  She couldn't appreciate how extraordinarily difficult it was for me to make the effort to attend at all, amongst the happy masses; how violently I was triggered upon running into her sister-in-law who sported her new baby boy in the same stroller we had selected for B.W.  At one year into my grief, another of my good friends basically told me that I was carrying on a little too much with my grief.  She said that by comparison and hypothetically speaking, the loss of my son to stillbirth wouldn't compare to a scenario in which one of her living daughters died.  You can imagine which she perceived was more tragic, more grief worthy.  These two women were bridesmaids in my wedding.  Their desertion and cruelty, in my time of deepest despair, hurt me more than I'd ever been hurt by a peer.  I haven't spoken to either of them since 2007.

And since I am human, I have muscle memory.  All of this plays into the hiding I do now, after Zachary has died. 

***** 

Now, I hide because I worry about running into one of Zachary's doctors, who failed him and us.  That would probably render me inoperable for a couple of weeks.  I worry about the chance run-in with someone who hasn't seen me/us in a couple of years and probably has no idea we had, and then lost, another son.  Oh my goodness, it's been too long... how have you been?  It's not a question I am able to answer honestly without talking about Zachary - just the basic facts, never mind the shattering details and the life altering impacts.  And worse still, I worry about the people I haven't seen, who have never *really* acknowledged Zachary's death.  I fear they will choose acting oblivious over offering their sympathy and acknowledgment about Zachary's death.  It has already happened several times since Zachary died, and it kills me every single time.  I worry about strangers, mostly other mothers, who try to be friendly with me.  One of their first questions is bound to be so, do you have other children?  Yes, two actually.  Both dead - yep, separate instances and circumstances.  And you?  Can you imagine how quickly they run? 

I also don't think most people can comprehend what it is to have to tuck away the grief and wear a mask, for some kind of gathering, when your child is dead.  Just the thought of being social, of participating in a celebration or in casual small talk, especially in a group setting, still makes my skin crawl.  It is So. Much. Work.  In the context of the everyday, now fourteen months after Zachary's death, it is expected that I'm managing... and honestly, I have no choice.  But, in the atmosphere of a planned get-together, a party or celebration, it is nearly impossible for me.  It is still so hard, so insulting, that life goes on.    

I wish I were strong enough for this stuff not to hurt and affect me so deeply, but the truth is, it does.  It was such a build-up, years of work and persistence, to finally exist again in a place of relative comfort, in everyday life and socially, after B.W. died.  My heart had to be stitched and reinforced and repaired again and again, over those years, as I interacted with people outside of my safe zone.  And when Zachary was born, I remember feeling even that much more a part of the world again.  I was so grateful, even proud of how far I'd come.  That was right before the rug was pulled again.      

*****

My hiding these days is only marginally successful, as it seems most places and people are unavoidably triggering.  A few weeks ago, stopped momentarily in my car, I saw my old exercise instructor walk across the street.  Her daughter, who was due to be born just a week or two before Zachary, was already riding in an umbrella stroller.  An umbrella stroller.  (I think I repeated those words, head shaking in disbelief, 500 times, that evening and over the coming week.)  My heart pounded violently as they walked across the street, right in front of my car.  There they were.  Out and about, living and breathing and doing what people do when they bring a new son or daughter into the world.  To contemplate their existence, their easy happiness, the mundaneness of their everyday, the timeline I should be living out with my Zachary, is one thing.  To see them in person, actually experiencing life together, was quite another.  

Contrasting realities

The snow that persisted for two months slowly melted over the course of the last week, tangibly lifting the spirits of everyone around me.  I walk out my garage door to fetch C.T. from school and directly across the street are moms with new babies, strolling together.  They walk the same way I do and it is too late for me to turn around and get into my car instead.  I am forced to listen to them commiserate about their babies, about finally getting outdoors.  Giddy parents wait for their children in the sunshine, comment about their relief that winter may finally be on its way out.  Everyone is smiling.  Head cocked, I don't understand how a little nice weather changes the tone of existence for my entire community. 

The friendly young grandmother who is about to shoot C.T.'s seven year portraits wants me to step around the counter to see her screen saver.  It's her first grandchild, a grandson.  He is five months old.  I quickly tell her my infant son Zachary died last year and that I'd prefer not to see her photo.  She winces in pain (part sympathy, part horror and by observation, with a hint of insult at my refusal to ooh and ahh over her grandchild), whispers a quick I'm so sorry, and we're back to the matter of backdrops and photo props.  Photos of little boys with baby brothers, of arms and hands holding toddling walkers, seem to be on every wall surface of the studio.   

I walk into the store early on one of the coldest days of the year.  I am here to look at fabric and there are probably nine people in the entire store.  I feel myself relax a bit, believing there is low likelihood that I'll be faced with explicit triggers.  Not particularly thrilled with my selection but knowing that I only have the emotional stamina for endeavors of this nature once in a while, I walk my fabric over to the cutting counter.  There is one person ahead of me and she has a cart full of soft nursery fabrics.  She proudly tells the store worker about her new grandchild, about all the things she is making and sewing for the baby's room. 

I watch House Hunters International because I think it is an escape.  The wife talks about what will be suitable for their two young children, and of course, for their baby on the way.  They have so many plans for their adventure and everything has got to add up.  They keep using the word perfect to describe their expectations for rooms, outdoor space, location, schools for their children.  I switch the program off.  I can't bear to see how perfectly it all works out for them.  I don't want to see their annoyance with the minor compromises they have to make.  I don't want to see their new baby thriving alongside them on their international adventure. 

I see people all around me, every day, functioning without the burden of child death, certainly without the horror of having lost two children.  Without having lost faith in all that this world has to offer.  It continues to surprise and disorient me that I have to learn to live with this, alongside so much of not-this.  How is it that so many have escaped my reality?

Survival by puzzle-ing

At this time last year, I spent my days grieving and researching PPROM, late-onset sepsis and brain hemorrhage in premature infants.  Each day, for hours on end, tears trickling down my face, I would cross reference the medical journals and papers with the over seven hundred pages of Zachary's medical records.  And, with every discovery or question raised (of which there were/are many), with every affirmation of the senselessness of his illness and the delay in his diagnosis and treatment, my crying would metastasize into trembling, head-throbbing sobs.  I was usually alone, or alone with C.T., at these times.  And it was extremely scary for all of us. 

It's strange.  People who stopped by in support of us during those first weeks and months might have characterized us as "managing" or "doing as well as can be expected" at that time, but let me tell you, it is the other 23 hours of the day, for the newly bereaved parent, that is worrisome.  The really ugly, the grappling not to fall or fade into total darkness, almost always happens in private.   

Despite the fact that several people were still trying to be physically and tangibly supportive at this time, it was not the love of family and friends that saved me.  And although it was suggested by several people, my head nodded in feigned agreement, it was not the living for B and C.T. that pulled me through this period of near death.  At some point, when I truly wanted to die in those first weeks, my swollen eyes happened to lock onto a 1,000 piece jigsaw puzzle of elephants sitting high up in one of our office cubbies.  It had been purchased in November 2012, just before we hosted Thanksgiving that year.  I remember it pretty clearly because I was pregnant during that particular holiday season, flickering with secret hope, before I miscarried in January.  I digress...

B and C.T. were home when I noticed the puzzle.  I recall announcing that I was going to pull it down and start working on it.  I hadn't moved to do anything since Zachary died..., except to sob, write condolence thank you(s) and occasionally force down some food.  And suddenly, without conscious thoughts about why, I had the capacity to do this.  Contents dumped carelessly on the table, I began flipping the over-turned pieces, one by one, so that all were visible.  It was a tough puzzle, mostly shades of brown and gray.  I wondered why I was drawn to it in the midst of my devastation. 

B, C.T. and I immediately began assembling the puzzle.  I was surprised they wanted to help.  Over the next couple of days, an eye, a tusk, the snow-tipped mountain peak, took shape.  C.T. seemed to be soothed by the activity and patiently looked to match up edge pieces.  We sat in silence for hours, working and crying, and then muttering about some aspect of the puzzle that wasn't coming together.  The puzzle became a refuge for us, but especially for me as I worked on the research related to Zachary's demise.  I would be at the very end of my rope, overcome with despair, and then I'd trudge the ten steps to the kitchen table and shift the core of my focus for an hour or two.  The puzzle didn't care when I burst out in slobbering wails.  My tears and saliva wiped off easily with no damage to the work that had already been done.  The puzzle waited patiently to be put together, its still-free pieces moved to accommodate a meal, a meltdown, an aching head.  The work was without expectation or deadline and nothing about it felt pressurized or like I was being checked or gauged for how well I was coping with Zachary's death. 
 

Over the next couple of months, our kitchen table became our puzzling station.  Friends who visited our home realized this activity was just barely keeping me afloat, and soon found themselves on our bench, helping me put together five or ten pieces.  The tiger, which took over two weeks to assemble, was probably the most difficult one we did. 

Sitting in those hospital conference rooms after Zachary's death, shaking, sobbing and so angry that I could hardly choke out my words, I wanted to dissolve into the air and take everyone who contributed to his death with me.  I honestly don't think I would have followed through with all of the research and the post-mortem meetings with Zachary's care team and the hospital risk management people if it weren't for the respite of these silly puzzles.  While assembling those jigsaw pieces, somehow I salvaged the strength and calm to question Zachary's care and his death. 

Yesterday, Zachary would have been 14 months old.  Fourteen months old.  My sweet precious boy.  I still have to be his voice and I've been paralyzed with the prospect of it since it took me down in November.  I think I've come to the realization that I need to resurrect those puzzles, or some similar coping strategy, in order to follow through with next steps in advocating for Zachary.