Monday, May 26, 2014


Our home is the place where I feel safe.  Here, I am protected from the outside world.  From its disregard and callousness towards my son's short life and its perceptions and judgments about how well I'm coping with his death.  What's left of my family exists in this place, wrapped in a cocoon of love for Zachary, united in the beauty of his life, the trauma of his sudden illness and death, the undeniably changed landscape of our family.  Zachary's belongings, framed vignettes of him and us together, mini memorials to him, are now interspersed throughout the spaces in our home.  While it might as well be a mirage outside of these walls, here there is tangible evidence that we lived an entire other life, with Zachary, in the month of January 2014. 

When I'm alone in our home, I allow the waves of grief to wash over me, my tears to flow freely.  I am unafraid to shout to God and the universe about how angry and broken and cheated I feel, how unfathomable and cruel it is that Zachary was snatched away from us just as we were beginning to make memories with him.  At home, I can remember Zachary out loud and speak of my grief, whenever and however I choose.  I can find a truly knowing embrace from the two people on earth who understand how unique and special Zachary was, how bright a future he had, how soul crushing it was to watch him suffer and then die and how it is to live with his absence each and every day.   


The three of us are going on a trip very soon.  I know there is no escaping this grief - that Zachary's absence and our sorrow follows us wherever we go.  But even with the understanding that the trip will be marked with bereavement, I despise that we are able to go at all.  We should be tied down to home, bound by Zachary's schedule and needs, looking forward to the day when a trip for the four of us would be more feasible.     

I wonder how we will handle being away from the safety and comfort of home during this trip.  Beyond the usual suspects, I wonder what kind of grief triggers await us there.  More so, I dread how despondent we will feel to resume everyday life without Zachary, once again, upon our return.      

Tuesday, May 20, 2014

One-third of a year

It has been four months today.  One-third of a year has passed since Zachary died.  He would be four and a half months old. 

Every cell in my body grieves Zachary's too-brief life.  The enormity of his loss, of what has been taken from our family, presses on me incessantly.  Brief distraction, when I acknowledge something other than my grief - a conversation, a grocery list, a game with C.T. - only brings me back more acutely to the crushing reality. The memories of his blissfully healthy week are almost completely overshadowed by the memory of the torture he endured, his lifeless body in my arms, by the Zachary void stretched out in the years ahead of us.  I have to force myself to breathe in and out, to trudge my feet, one in front of the other.  I feel tired and desperate and so very alone. 

Life goes on all around me.  Oblivious to Zachary's moment-to-moment absence.

No one can carry this Zachary-shaped burden of grief but me.  I am his mother. 

Saturday, May 17, 2014

Condolences from our yard, shattering nature's plan

Little Elegy
by Elinor Wylie

Withouten you
No rose can grow;
No leaf be green
If never seen
Your sweetest face;
No bird have grace
Or power to sing,
Or anything
Be kind, or fair,
And you nowhere.


There is a crab apple tree in our front yard.  It is small and low, yet sprawling, and beneath it are two large flat landscape stones, set at near perfect elevation.  In mid-spring, for just a few days, the delicate white blossoms of the tree are the absolute centerpiece of our landscape.  After Zachary was born, and hope was high, it occurred to me that the crab tree would bloom well after his release from the hospital in early March.  I vowed to capture some photos of our boys there this spring, in front of the fleeting beauty of that blooming tree.  I imagined allowing C.T. to hold Zachary, while sitting on the stone there, soft white permeating the background of the snapshots.  I remember my heart thumping with anticipation to bring Zachary home, to have a photo of two (of my three) boys together there in front of the tree, both of them thriving.  I could hardly wait. 

On the side of our home is a row of purple tulips bulbs, planted on a cold day by B and C.T., late in the fall two years ago.  There was much excitement last spring as we waited for the first sign of green to poke through the earth, for the growth of those leaves to ultimately reveal the flower within.  They were beautiful last year.  How I dreaded those tulips forcing their health and beauty on me, again this year.   

But somehow, the crab apple tree and the tulips knew not to mock their caretakers.  Neither of them bloomed this spring.  The crab tree went from brown with shriveled apples, to green.  The tulip greens emerged, but not one of them showed their flower.  As if to say: We are so sorry.  It is all wrong.  Nature demands that we emerge from the winter, but our beauty has been totally drained in Zachary's absence.  We refuse to bloom in respect of your unthinkable loss, your deep, deep sorrow.  

I am certain there is some weather-related explanation for the lack of spring blooms in our yard this spring.  But, how strange and appropriate it feels to me, in the aftermath of Zachary's death. 


The sun rises in the east.  The winter inevitably yields to spring.  The tides ebb and flow with comforting predictability.  Seeds take root, push their greenery toward the sun, bloom, produce new seeds, wither and died, all in orderly progression according to nature's plan.  When an aged parent dies, though we may grieve deeply for the personal loss, the world is not turned upside down.  Nature's plan, the predictability of the universe, remains intact.  When a child dies, the very ground on which we depend for stability heaves and quakes and the rightness and orderliness of our existence are destroyed.  Nothing in life prepares us; no coping skills were learned.  Parents who lose children are thrown into chaos.  The loss of a child is shattering, unique among losses. 

~ Judith Bernstein, Ph.D., from her book, When the Bough Breaks

Wednesday, May 14, 2014

Not enough

The shop owner sat with me patiently, on probably six separate occasions, spanning six or seven weeks, as I cried my way through designing and redesigning Zachary's photo books.  I chose him because he produced the canvas of Zachary in time for the funeral - a time constraint at least a couple of other photo labs would not entertain.  During my visits, he didn't panic when he saw me reach for the tissues.  As my tears fell, he would shake his head, saying it's okayYou are the bravest person I know or I'm amazed that you can do this.  He listened to my voice crack and trail off, as I explained that even a 10-20% improvement in the light, color or shadows of Zachary's photos would be worthwhile for us because these images are all we have.  He helped me reconfigure the page layouts when I couldn't tolerate having Zachary's last healthy photos facing the photos of when he became sick.  We spent at least an hour together, just on fonts, ensuring Zachary's name had the look I wanted, with enough shadow to balance against the cover background.  Over the course of our time together, I had to look away from his computer screen savers and the photos smattered all around his office.  His triplets, all three, perfectly alive and well, having survived their NICU stay. 

I have been through Zachary's photos a thousand times.  I lived each moment with him.  I know the sequence, the context, the emotion buried in each image.  I know how the story of his life and death unfolds in the photos.  I can feel Zachary's weight in my arms, his breath on my neck, when I see the photos of me holding him.  I look at close-ups and I remember how soft his skin was, how perfectly smooth his hair felt.  I can anticipate the sick feeling I get when the photos transition between his health and sickness.  Even more gut wrenching, the point at which hope still exists during Zachary's illness, and then abruptly dies, on Friday, January 17, with news of his brain hemorrhage.  But when I picked up the finished products early this morning, my hands were trembling, my heart racing, as if I had never seen these photos of my precious boy. 


When I sit down and flip through the culmination of all this work and time, I am crushed all over again.  I weep uncontrollably like I did when I stood over his isolette that Friday night.    Zachary's story is so inadequately told through these images.  He is alive.  He is sick.  He is dead.  His life, in thirty-six unsatisfying pages, bound up and housed in a memorial album box, to sit on the coffee table. The finality of looking through the book, for the first time, knowing I'll NEVER have another new photo of him, never have the privilege of pulling together photos of him for a milestone reached, is just too overwhelming.  How can this be it?  This is all I have left of Zachary?  These photos, this book - it is not enough.  It will never be enough.  This must be some kind of sick, cruel joke.  I will return the book, no refund necessary.  Just give me my son back.   

Sunday, May 11, 2014

Day of Dread

My (own) first Mothers Day was almost entirely devoid of happiness or joy.  There would be no celebratory brunch with the other mothers in my extended family.  No cooing at B.W.'s seven month old fleshiness, no virtual badge of honor awarded for my sleepless nights, no retelling of his birth story, no demonstration of his new tricks.  Only empty arms that ached to hold him and some flowers from my husband.  While more than a few family members and friends acknowledged my motherhood and remembered B.W. that year, by calling or sending a card, I was also keenly aware that I should keep my new-mother-grief close to the vest and try not bring anyone else down on their special day.  To say I felt robbed that first Mother's Day - of my son, primarily, but also of affirmation that I was a worthy mother, albeit bereaved - is an incredible understatement.

C.T. had been born, alive, into our family, by the time the following Mothers Day arrived.  Suddenly, I was much more a part of the club, included in the celebration of all things motherhood.  People anxiously wished me a Happy Mothers Day.  They pulled me in, rather than keeping me at arms length.  I did my best to accept the congratulatory tone I heard in their voices, but silently resented that the other side of my motherhood, the side that wept for my dead son, wasn't acknowledged and honored.  Some forgot that it wasn't my inaugural - asking How was your first Mothers Day?, which had the effect of squashing out their attempted well wishes altogether.  Many bravely reached out to show they knew it wasn't simply a day of celebration, that they remembered the one who was absent.

Every Mothers Day since then, before 2014, most of our family and friends have continued to understand that it's a bittersweet day.  That as I bask in the light and beauty of my living son, there is still one, equally beloved, who is dead and gone and forever missed. 


And then Zachary came into our lives this year, and died two weeks later. 

Doubling the dead children in our family.

Making Mothers Day more bitter and unbearable than I could have ever imagined.  

The day literally noted, by me, as Day of Dread on our family calendar. 

Can I say I have been blown away by the many, many family and friends who have reached out to me leading up to and on this first Mothers Day after Zachary's death?  Although the grief wore heavy on me throughout today, in a more punctuated way than every other miserable day, I also felt that Zachary (and hence B.W.) was loved and remembered through the calls, texts, cards, emails, flowers and gifts of many.  I can't express how much it meant, how it affected my attempted numbness and ever so slightly eased my burden today.  I think I survived the day because I was enveloped in love, in memory of Zachary.     

This may be the first time I've posted something remotely like thankfulness, other than for the lives and gift of my three children. 

Wednesday, May 7, 2014

How to reconcile

Zachary would have been four months old today.  He would have been outside with me, taking in the sights and sounds and smells of spring, melting my heart with the wonder in his eyes or with milk-drunk baby sleep.  C.T. would have run out from school, giddy with anticipation to see and kiss his brother, before walking home with us for lunch.  By now a proficient mother of an infant and a six-year old, I would have nursed Zachary while reading books with C.T., would have found a way to meet both of their needs at once, throughout the day.  Neighbors and kids might have been out, riding bikes, collecting rocks, stopping by to peek at how much Zachary has grown and changed.  Exhausted and high on spring fever, B and I might have abandoned plans to cook dinner and opted to take the family out to eat.  Yes, there are four of us.  Yes, we'll need a place for his carrier.  Thank you.   

I still cannot wrap my head around what has happened.  To Zachary and to our family.   I cannot reconcile what should have been, would have been, with what is.  They run in parallel, battling each other to co-exist in my brain.  How did my perfect premature Zachary go from excellent prognosis, to dead, all within two weeks?  How is it that we lived an entire other lifetime in those 14 days, in the month of January, and now we are supposed to resume life as it was, without Zachary?  How the hell did he acquire E coli?     

While I struggle to believe and absorb what has happened to Zachary and us, somehow I still need to attempt to live in the here and now.  I need to be C.T.'s mom, or some minimally adequate version of her.  He needs me to be present, encouraging, reassuring, even playful.  Sometimes, I manage to do this for C.T. - to compartmentalize my grief, the heaviness and the battles raging in my head and heart.  Other times, I can hardly bring myself to try. 


Today, with anxious eyes, C.T. asks me in his most authentically innocent six-year old voice...   
Could I die from bronchitis or walking pneumonia?

I crouch down to his level, allowing him to sit on my knee.  I explain how incredibly unlikely it would be for a child his age to die from ailments such as these.  We talk more about Zachary's illness.  I reinforce how his prematurity put him at risk, albeit low risk, for some really scary stuff, that ultimately took his life.  I reassure C.T. that the illness that has caused him to miss school for a few days (after a pediatrician visit, it's been diagnosed a sinus infection) is one from which he will easily recover.  And I believe what I hear myself saying.

But, I'm not telling the whole truth, and C.T. has been through enough to sense it.  The highly unlikely, the unthinkable - the worst - has happened to our family.  Nothing can be taken for granted.  No sure-things or falling on the right side of statistics can be fully trusted.  C.T. is going through his own process of reconciling what he is told with what he has experienced.  I hate it for him.    

Sunday, May 4, 2014


My soul cries out

What is left?

Those who love and care for us

would prefer I don't speak it.

Well... you, and B and C.T., of course.

You're still here.

You must go on and live for each other.

Yes, I say - I know and we will.

But we cower in fear,

huddled together for protection.

Who will be next?

What if C.T. doesn't make it through his teen years?

Only 60% of our family still stands. 

Thursday, May 1, 2014

Zachary's eyes

When Zachary was awake, his dark eyes were curious and penetrating - much more so than I ever imagined they would be, given his prematurity.  It seemed he willed them to stay open as long as possible, allowing a single quick blink, only when his reflexes absolutely forced it.  I felt he was tracking my voice and my shadow, eagerly searching for me.  Calmed and assured of this strange new environment mostly because of my presence. 

I would whisper to him gently as I soaked up the gaze of my precious boy.  Good morning, Zachy.  Mommy loves you so much.  How are you feeling today?  They tell me you're doing great, sweetie.  You just get bigger and stronger and we'll go home. 

On Day 9 of his life, when Zachary was diagnosed with the infection, he was clearly suffering - had been for almost 24 hours - and fighting for his life.  I was so helpless to do anything for him, but I knew he could sense my presence and felt comforted by my touch.  He still searched for me with his eyes.  The intervention notes from his medical records on that day say:

O2 saturations increasing after mother contained infant.

Calms for mom, containing. 

During that night, Zachary was pumped full of antibiotics, fluids and various other drugs to help with his blood pressure, kidney function and pain.  Blood and platelets had been given more than once.  The sedatives they were giving him weren't relaxing him and he was still fighting the ventilator which he'd had since the prior afternoon.  After a particularly bad desaturation episode early the next morning, they asked us to step out of Zachary's room. When we returned, we found that the neonatologist had medically paralyzed him, in hopes that his vitals would stabilize.   

I haven't paralyzed a kid in probably 10 years, but I think we needed to do it.  He's just fighting too hard.  I really think it will help. 

And, it did "help".  Zachary couldn't fight the ventilator or get too agitated with the constant pokes and prods - both of which were causing him to dangerously desaturate.  But, it also took away any ability he had to communicate.  He could no longer cry, blink, sneeze, squeeze our fingers or move any part of his body.  He couldn't show us that he was feeling pain.  He couldn't look for me.  

Of all the interventions they tried, this particular one nearly broke me.  I remember feeling new layers being scraped out of the already cavernous pit in my stomach, upon seeing by sweet baby, now paralyzed.  Of course, at that time, I also still had some hope that this would all be a distant memory, if Zachary could just pull through the sepsis. 

There are so many things I miss about my precious boy.  Looking into Zachary's eyes and knowing that he was trying to see me is just one of them.