Tuesday, March 31, 2015


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.  

Tuesday, March 17, 2015

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?

Sunday, March 8, 2015

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.  

Sunday, March 1, 2015

Storing away and erasing

Today, after a week of back and forth with the seller, I finally purchased a trunk to house Zachary's things.  Another chunk of money spent at an etsy shop, on a memorial something for this particular deceased member of my family.  The trunk will be engraved with Zachary's full name and birth and death dates.  Per his father's wishes, it will have a flat top for yet another memorial spot for photos of Zachary.  I hope it doesn't have a funky smell that transfers onto all of Zachary's stuff.  They claim the trunk will be heirloom quality.  We'll see. 

37.5" x 13" x 13" are the interior dimensions.  His NICU wear and gear will fit.  His birth certificate and other important paperwork, his hats, clothes and blankets (those that actually touched his skin) and what's left of his opened but unused diapers will fit.  There is not enough space for all of the items gifted to Zachary that he was never able to use.  There is not enough space for all of the blankets intended for him that draped my shoulders, enveloped him and me, in the couple of days I simply could not stay warm because of the knowledge of his destroyed brain and his impending death.  Does it really matter that not everything will fit in the trunk?  I am tired of looking, tired of putting it off because I haven't found something precisely perfect.  He is dead.  Zachary certainly doesn't care what happens to his stuff anymore.  And, why would we want his stuff wrapped up so completely and perfectly anyway?  His worth, what he means to his family, cannot be contained in a wooden box. 

Dust has been collecting on all of his things, still laid out in various places where they landed in the first weeks after he died.  Every time I notice a fresh layer of dust accumulated on the things he should have long outgrown, I'm furious..., more furious than usual.  So, while I believe it will be extremely painful to see Zachary's belongings "put away", and while I've been reluctant to move his things at all, I suppose it will be better for them to have a more dust-free home.   
It took me a long time to acknowledge the passing of time after Zachary died.  It was mid-February 2014 and our calendar, previously known as our family calendar, was still stuck on January.  The last time it had been updated was on December 31, and it was only partially updated because that happened to be the same day my water broke and life was thrown into utter chaos.  Between December 31 and January 20, when we were in the hospital with Zachary, and the hours of our days were planned on scrap pieces of paper and texted or otherwise relayed to C.T.'s makeshift caretakers, the home calendar was updated only with necessary information:  Zachary's wrist band ID number and the NICU direct line so that we could call to check on him at night.  A pitiful birthday cake, hand drawn by Zachary's proud daddy on the 7th, acknowledging the day he was born.  A celebratory smiley face on the 14th, one week after Zachary's birth when he had officially regained his birth weight.  

Then, celebration turned into crisis and then into total devastation.  Zachary's illness, and then death, completely stamped out anything we had planned for our January.  We didn't see the calendar again until the day after Zachary died, after we returned home.  Never again was it updated for that month.  The day before we were have C.T.'s sixth birthday party, which of course was cancelled, was the day of Zachary's funeral.   And three days after the funeral, on C.T.'s birthday, I was to have a regular OB appointment (of course, that was before everything happened).  I took a picture of our January 2014 calendar before I was finally forced to update it at the end of February 2014.   I couldn't let the reality of our January, that whole other lifetime we lived with Zachary in that month, disappear without tangible evidence that he was indeed part of our family calendar. 

I used to enjoy jotting down our commitments and adventures on the calendar.  I took pride in making sure we were all aligned to get where we needed to go and had a couple of open chunks of time for spontaneous fun, together or apart.  I used to look forward to things, to seeing people and to outings or trips we had planned.  Now I hate updating the calendar.  I hate being the family for whom it all unfolded as it did in January 2014.  To erase that month last year, to update the "family" calendar minus Zachary, just as he had made his glorious entrance onto our calendar, knowing that all our future plans would never again include Zachary, was sickening.  To acknowledge that the months, our lives, were going to keep on pushing ahead without him...  I could hardly bear to wipe that month off of the dry erase board. 

We still have commitments and important appointments now, even if they are mostly insignificant in our hearts.  I updated our calendar for March 2015 today and it is truly no easier, no less depressing than it was at this time last year.  Even though we have some things planned in the "fun" category, for C.T., B and I can't seem to drum up any real enthusiasm for them.  People say things like "you must be looking forward to that..." or "that will be so fun for you all".  Neither of us know how to respond, as we are aware that no one really wants to hear about the fact that we still struggle to accept that Zachary isn't a part of these activities.  Or that most of the time, our activities are filled a great deal of pain and anxiety.  Or about our feelings of apathy about our plans, and about the future in general.  Or about the fact that we wouldn't be surprised at all if our plans were completely foiled again by another death in our little cursed family. 

We've kept the words "We love you Zachary" written at the top of the calendar each month since I began updating it again after his death.  As if to remind whoever sees it that as we are forced to trudge ahead, as our hours and days are filled with stuff, he is remembered and missed and still somehow part of our calendar.