Wednesday, December 31, 2014

New Years Eve 2013

One year ago, today, just a couple of hours before the new year, my water broke unexpectedly and prematurely with Zachary.  The gush and the instant shrinking of my swollen abdomen left me gasping for air, begging for logic and reason and instinct to kick in and tell me what the hell to do to help my baby boy.  There was so much blood.  Horror-stricken and believing he was already dead, we raced to the hospital, leaving C.T. asleep in his bed, our neighbor running to our house just ten seconds behind us.  I remember sobbing in the car as B and I contemplated the cruelty of losing another son and what we presumed would (now) be a double life sentence of parental grief.  I prayed for Zachary and for my sanity. 

An hour later, we saw Zachary on the ultrasound screen, full of life and responding incredibly well to having lost almost all of his fluid.  The gratitude I felt for his life in those first moments of knowing he was alive, after having lost B.W., is nearly indescribable.  But it was also immediately overshadowed by the fear of what was to come, and the near certainty that my third son would arrive prematurely.  It was just a question of how soon. 

While much of the central time zone was ringing in the new year, I was being pumped full of fluids, precautionary antibiotics and magnesium sulfate to stall my labor.  I received the first of two critical shots to speed Zachary's lung development.  Laying flat in a hospital bed, legs anchored by compression boots, catheterized and then relieving myself via bed pan, 24-hour monitoring of Zachary's heart rate and my contractions, was suddenly my new minute to minute existence. 

Looking back, I desperately wish I would have been stronger for Zachary, that night, and for the week I spent laying flat in the hospital before he was born.  I was so terrified for him, and I was in so much constant pain.  I often wonder if by sheer will power, or by some form of calming meditation, or by not shifting around so much in that miserable bed, I could have delayed his birth by another day.  Maybe then he would have been assigned a different NICU room where there was no exposure to the bacteria that senselessly ravaged his perfect little body and brain and eventually took his life.  The burning regret for any part I had in Zachary's demise, no matter how far fetched, nearly consumes me at times. 

If Zachary were here, if he would have lived as all expectations and prognoses suggested, we would be celebrating this day.  We would be giving thanks for the intervention that stymied the close call on New Years Eve.  As much as I try to focus on gratitude for the three weeks with Zachary that followed, my heart knows that this night last year, was actually and unfathomably, the beginning of the end for him.   


Tuesday, December 30, 2014


You are alive in my mind, Zachary.  I see your pulse, keeping pace in your tiny wrist.  I watch you find me with your innocent searching eyes.  I kiss your forehead and trace your eyebrows with my thumb.  Your fingers close tightly on mine.  I don't even try to resist kissing you over and over again.  Your eyes flutter and shut, as you drift off to sleep in the warmth and safety of my arms.       

The days and moments we shared together, my son, are always on my mind.  I still don't understand how it is that you are not alive.  How it is that two weeks was supposed to be enough.       

I think of you, of what you mean to me, and I wonder how anything will ever really matter to me again.

Wednesday, December 24, 2014

Christmas Eve

I remember Christmas 2013.  I remember dragging my tired, pregnant body up and down the stairs on Christmas Eve, placing gifts from Santa under the tree for C.T.  I remember allowing myself to dream, with B, that maybe just maybe, we would be able to delight another son with gifts from Santa in 2014 and beyond.  We were so ready and so in love with our unborn baby boy.     

I remember being cautious about Zachary, about assuming he would actually come to be part of, and stay part of, our lives.  I remember tempering every casual conversation about him with "if he survives" and "yes, we're excited but terrified", and feeling uncomfortable as people talked about our future with our unborn son as if it was all a certainty.  I sensed they were perplexed and disappointed in my inability to be fully optimistic - which made me wonder if they really knew us and what we'd already been through (with B.W.) at all.  I was injecting myself with blood thinners, right?  I was being seen by a high-risk specialist, right?  Those rudimentary questions were answered in the affirmative and with the wave of their hand, people thoughtlessly assured me Zachary was going to be fine.  I desperately hoped they were right.


It is Christmas Eve and I feel so utterly broken.  It feels so wrong to have added a third stocking to the mantle, but for another dead son.  A son who was in my arms, had cleared so many hurdles, only to be killed by layers of carelessness.  We began living life with Zachary, and still, somehow, he is dead.  I miss him terribly. 

Monday, December 22, 2014

The truth about giving this year

The donation center worker scans the pages, looking for record of my commitment. 

Ah, yes.  Here you are.  So, you have gifts for Hugo and Emanuel?  Wonderful.  Are they individually labeled with the names and family numbers? 

I have no problem handing over the sack of Christmas gifts on my left arm.  They are for Hugo, a (now eight year old) boy we've been systematically matched with almost every year since B.W. died.    

An audible groan escapes my body as I lift the bag of Emanuel's gifts up over the table.  Selecting them and wrapping them for this needy child (for the first time in memory of Zachary), has been sheer torture for me.  Deep down, I do not want Emanuel to have the gifts.  I resent that I've "adopted" another needy child because another of my sons has died.  I am bitter that Emanuel will receive the Christmas gifts I should be giving to my Zachary. 

The bag of gifts leaves my hand, slips right through my fingers, just like Zachary did.  On its way to making sure Emanuel is treated to new toys and books this Christmas.  I shove my empty hands into my coat pockets and walk out of the donation center, numbed by the bitterness I feel.    

Making donations in memory of one dead son is evidently all I am able to handle with grace. 


It is still too much for me that Zachary has died.  The reading on my loss barometer has been pushed beyond its limit.  It is stuck on maximum, vibrates there spastically, unable to register the whole of this new level of destruction. 

Was it too much to expect, to ask?  That another child of mine would simply live?   

Will giving in Zachary's memory ever feel anything but bitter?


Friday, December 12, 2014

What subtle suggestions feel like

Please do not tell me I should count my blessings this holiday season. 

If you want to know the truth, nothing in my life feels blessed.  Maybe it helps you to imagine I would be capable of counting my blessings amidst the massive tragedy of Zachary's death this year.  I wonder why you would choose the Christmas holiday, with all the painful splendor of the baby Jesus in the manger, for highlighting my many blessings,... when my own baby has just died.  I wonder if you even considered how disorienting it is to have my blessings dangled in my face at the same time that I'm seeking professional help to manage the PTSD that plagues my hours, as I battle headaches and anxiety brought on by my grief and the trauma of Zachary's suffering and death.  I wish I could return to the good old days when I might have reflected on my blessings, but that would mean Zachary was here with me this Christmas.  Instead, he is dead and my grief is inflamed, stressed and trampled by the unrelenting joy and spirit of Christmas, by the pressures to participate in it despite the carnage that has befallen my family. 

Please do not tell me I should be thankful for C.T.

You must know how much I love C.T.  What you don't see is the degree of effort and care I put into mothering and loving this developing person, our C.T., on a daily basis.  He is all I/we have.  But showing my gratitude for C.T., as I do each day, does not diminish my brokenness in Zachary's suffering and death.  The life of one son does not offset the death of another. It just doesn't work that way.  Maybe you feel you are being helpful to "encourage" me to see the light that not all has been lost.  I don't need any help to realize how fortunate I am that C.T. is still here.  But, telling me how thankful I should be about it is like imploring a double (leg) amputee to be thankful that at least she still has her arms.  It only serves to make me feel more isolated in the reality of my loss, my day to day reality and my future. 

Please don't tell me you miss me.   

The me whom you miss is gone forever.  No one misses her (and the life she had) more than I do.  When you guilt me with this, when you mention, for instance, your concern at not having seen me in some time, my insides boil with rage and frustration at your "needs" being held in higher regard than my tender, bereaved mother heart.  I miss Zachary every minute of every day - much more than you miss seeing me occasionally.  My fear is that your fleeting thoughts about missing me (and B and C.T.) are somehow worth more to you than my son's suffering and death, more than the grief of his loving mother.  Please allow me to take care of myself, even if I'm not able to see you as often as you expect or hope, even if our rare meetings are awkward and painful because I'm in a dark place.  Zachary left us only ten and 1/2 months ago.  If you miss me, please come alongside me in my grief instead of waiting for the old me, and for me to show up in familiar contexts.  I rarely have the strength to reach out on my own.  Offers of "if you ever need anything" almost always fall flat.  I am just starting to process what happened to my boy, just beginning to accept he has died.  It takes a tremendous amount of time and emotional energy, and I find I have almost nothing left to give, even to those who care deeply.  Like you, I desperately wish it were different.      


I know you care about me and I don't believe you intentionally hurt me.  I know that you have your own stuff going on.  I know that you'd like to take it all away for me, so that you could see me happy again.  But, I am so incredibly fragile because of what I've been through.  Like a burnt match ready to disintegrate at the slightest touch, your words and your opinions about my grief, no matter how subtle, gentle or well intentioned, can crumble me.  It makes me feel so helpless when you seem disappointed about how I'm doing or frustrated that I can't just focus on joy and gratitude again.  Right now, I am existing and doing what I can to cope.  I am caring for my family and executing the day to day stuff pretty well.  I think that's actually pretty stellar considering the circumstances.  I wonder if you would be coping any better or more acceptably if you wore my shoes.    

Please try to remember my beautiful baby boy, my third son.  His tender skin, his dark, spiky hair, his perfect fingers and toes.  Remember that I am his loving mother.  Remember that he became ill so suddenly and senselessly, that I witnessed him suffer more than I imagined possible, that I was forced to watch him leave us, forever, just as we were planning to bring him home.  Even if you can't tangibly imagine the trauma the four of us endured, please remember that it exists and that we must live with it every day.     

I need to continue to be gentle with myself, to allow myself to process and grieve Zachary's death and the compounded loss of my boys.  My responsibility is to care of myself, B and C.T.  Although subtle suggestions call it into question, I am not responsible for making sure that everyone is satisfied with how I'm handling Zachary's death. 

Thursday, December 4, 2014

Blessings, caves and difficult topics

The concept and traditions of Thanksgiving rang hollow for us this year in Zachary's absence.  The gluttony, the familiar motions of the day and visits with family, the damned thankfulness, was simply too disorienting to absorb.  More than anything, the idea of family and togetherness, which for us feels unfairly scripted and utterly, horrifyingly incomplete without our beloved Zachary, might have totally extinguished the tiny flicker of existence we are clinging to.  
We opted to leave town instead, to take a road trip to Mammoth Cave in Kentucky, a six+ hour drive from our home and to visit Indianapolis on the way home.  
We arrived at our small-town Kentucky hotel on Thursday afternoon, relieved to find more than one restaurant open for dinner.  We were seated immediately, adjacent to a table where a woman was offering her "blessings" on the holiday to anyone who came into contact with her.  The server, the clean-up crew, patrons who made eye contact with her while passing by her table - everyone was subjected to being blessed.  For one unfortunate restaurant worker, after a short, forced conversation about the holiday and the season, I overheard her inviting him to visit her place of worship and be healed.  His response was much more courteous than I would have managed.  As we finished our meal and stood from our seats to pay the bill, I braced for the holy-roller assault on us.  She eased in with a couple of pleasantries and began to bestow her blessings.  I smiled, turned my back and walked away, completely ignoring her, resisting the urge to tell her where to shove it.   
On Friday, we boarded one of three tour buses which unloaded us at a massive sink hole entrance to Mammoth Cave.  As we descended further into the earth, 280-something steps on this particular tour, even as I felt claustrophobic at times, I was comforted by the stillness, the dark, the damp hanging air in the cave.  It was strikingly familiar.  That inescapable, unrelenting heaviness, the suspension of perception about time, the feeling of being totally separate and apart from the happenings of the world.  In many ways, the cave experience perfectly suited my state of mind, my grieving heart.  I whispered Zachary's name a thousand times during our tour, my heart foolishly hoping to find him there. 
In response to questions about the stability of the limestone boulders and rocks all around us in the cave, the guide explained that with the exception of the changes made by water and carbonic acid flowing and dripping in spots, the tendency of cave structure is to remain unchanged over very long periods of time.  Without exposure to seasons and weather elements, naturally-formed cave structures are, by and large, protected - even from the occasional earthquake.  I wondered if our presence would elicit some exception to the rule.  If we would be the first tour group to be crushed or trapped by a falling boulder.  If the cloud of misfortune and tragedy that follows my family would wreak havoc on us that day.  It did not.   
We drove half-way home on Friday afternoon and spent the night in Indianapolis so that C.T. could visit the children's museum there on Saturday.  The museum was really pretty spectacular.  One of the large exhibits was dedicated to the power of children in history.  Unlike many history-based exhibits which struggle to hold the interest of today's children, this one highlighted stories of child suffering due to discrimination, hatred and fear (think Anne Frank, Ruby Bridges and Ryan White) in engaging and interactive ways.  There was even a life sized recreation of the classroom in which Ruby Bridges attended first grade with white students in New Orleans.  For a moment, I was puzzled that so few families were visiting the exhibit and these brilliantly depicted stories.


My confusion lasted about half a second.  Of course.  These stories are sad, gut wrenching and terror-filled in some cases.  They are difficult to explain and accept.  They take time and care and attention of the parent to translate to the level of understanding of their own child(ren).  Many children who are able to understand, at their own level, are so sheltered, distracted and over-stimulated by the orderliness of their own lives that they simply cannot absorb these stories.  And, let's be honest, most everyone who showed up at the museum that Saturday was there to "have fun"..., not to be depressed about the suffering of others.

It is striking how closely the repulsion and resistance to these difficult topics is mirrored in my existence as a bereaved mother.  So very few people actually care to learn about this grief, to imagine the suffering experienced by my Zachary, to accept that it has altered everything in my life and will live in me forevermore.     

Saturday, November 15, 2014

Hit a wall

I've been on a downward spiral for a couple of weeks now.  I can't seem to escape, not even for a few seconds, the constant replay of Zachary's life, illness, death and all the incidents and details that surround all of it. I know at my core that he is dead and nothing (but grieving) can be done, but somehow my brain and nervous system have been fooled to fight furiously for him anyway.  The grief seems to want to consume me.  I can't even organize my thoughts and emotions well enough to write about them, as evidenced by my lack of posting here. 

Friday was the eighth day in the last two weeks where I awoke with a painful headache and heart-racing panic attacks about Zachary.  As I attempted to push through on Friday morning, as I packed lunch and started breakfast for C.T., my mind and body finally hit a wall and gave in to the brewing breakdown.  I found myself, in the midst of putting breakfast on the table, completely unable to care for C.T. or myself.  Everything in me, except for my tears and racing, panicked thoughts, ceased to function.  Fortunately, B was there to step in and care for C.T. and me.  The few hours he spent at work felt like an eternity while I was home alone in my fragile state.        

I feel stable(ish) right this moment, although I'm still battling the same headache and panic attacks today.  It is fortunate for me that B is around for the weekend.     

I refuse to feel ashamed of this weakness, of my need for some professional help which I plan on seeking as soon as possible.  Zachary died just nine and 1/2 months ago, just as I had worked for years to reclaim a new life, seven and 1/4 years after B.W. died.  I have been through hell.  Of course I've broken down.  I am trying to live with this hell, to play nice, after watching my two-week old son suffer and die.  It is amazing that I have made it this far without the help of a professional. 

B reminded me today that he hasn't uttered the words Everything is going to be okay since the moments before we learned of Zachary's brain hemorrhage.  That's because everything is not okay.  Zachary is dead and we are not okay.   

My writing will probably be spotty as I regain some kind of foothold.     

Monday, November 3, 2014

A few triggers, of thousands? of millions?

Several times each day, obvious and seemingly innocuous triggers rip and tear at my hasty facade of normal-ish behavior, bearing witness to the truth and depth of my devastation. 


Have you seen this commercial on television?

The innocent "what ifs", the knowledge that these are the questions that keep most new parents awake at night, makes me feel like a leper.  Picture me at home on my couch, standing up from my seated position, arched forward like a dragon breathing fire, and screaming at the television:  What if he dies?!  What will you do then?  What if two of your children die?  


A female customer a couple of aisles away from me, seems to relish the oohing and ahhing over her baby boy, in the cart.  All of the onlookers are enthralled with this little being..., the lady packing her cart in front of the new mother, the cashier, the woman behind her.  I literally feel like vomiting.  I need to escape.  Again, I am the new mother whose baby died.  There is no cooing over Zachary, no pride for me to enjoy as strangers admire my precious boy. 


Every time I help C.T. with his homework, or he asks me to teach him something new, something beyond what he's learning at school, I am blown away.  The books he can read, the rules of spelling he knows to apply, the reasoning skills he uses for problems of all kind.  For every bit of learning C.T. does, for every intricate demonstration of his intellect, my heart weeps for the decimation of Zachary's fully functioning brain.     

Tears trickle down my face almost every time I trim my finger nails.  That mine continue to grow, that I never had the chance to trim his, can eat at me, can stab at my heart, for an entire day. 


C.T. is picking up his room in the morning.  He kneels down to retrieve a fur bear that belongs on his rocking chair.  Out of the corner of my eye I watch as he gently scoops the bear, both arms underneath, careful not to bend its arms (one of which has fallen off and was carefully reattached.)  C.T.'s touch is so delicate, so tender, even as he is totally unaware that he is being watched.  I am whisked back to the one long day that he was able to kiss, hold and caress his brother.  He loved Zachary so purely, so fiercely yet gently.  It is just too cruel. 


Strategizing to avoid driving past the hospital where he lived his life and died is exhausting.  A glimpse of that building fills me with fury at the layers of carelessness that culminated in Zachary's death.  On my behalf, a friend of mine asked the hospital foundation to remove B.W.'s memorial brick from the garden there.  That I had to unearth a memorial to my firstborn, in a garden I worked for five years to help erect, because I can't stand the sight of the place..., well, it is truly outrageous.        


A newborn hiccups at C.T.'s ninjutsu class and I am transported back to Zachary's first week of life.  My hands are in his isolette, stroking the fine hairs on his shoulder, talking to him about his constant hiccuping and how we laughed at them when he was still inside of me.  I am in the chair beside his isolette, pumping milk for him, hands now unable to get to him, giggling at his hiccups that won't quit.  Even his hiccups are adorable.  It is such a tempting memory.  And, so crushing to allow myself to go to that place of beauty and expectation, to transpose or sync it with the devastating end, with the avoidable illness that violently destroyed him.     


A cashier hands me my receipt and tells me to have a great day.  It never fails to sting, even as I know she has no clue.  It's part of her routine, something she says to every customer.  If she only knew the absurdity of those words, the impossibility of her suggestion.      

Friday, October 31, 2014

Invisible lion cub

Today, I rummaged through my computer files looking for photos from Halloween 2008.  It is one of the two times since Zachary's death that I have been brave enough to look at older photos, knowing they will unleash a deeper level of sorrow and regret at the old us and at all of C.T.'s ages that Zachary will never attain.  With a heavy heart and shaking hands, I located the photos.  C.T.'s precious round face, his drooly innocent smile and blue eyes, seemed to beam right out of his hooded lion costume.  I had assumed Zachary would use that costume this year.  I tearfully considered clipping out C.T. from his own photo and including the lion costume here.  But, of course, that would be wrong.  And, it is simply too sad.  The costume is not Zachary's and it never will be.  It was saved for him, but it never touched his body.  He will never use it. 

Nonetheless, Zachary would have been a lion cub today, for Halloween.  Will anyone but us feel his absence today?  Does the universe care that there should be one more lion cub?  Probably not. 

I think that's one of the more crushing aspects of losing my children when they were babies.  They are everything to me, B and C.T., and yet, they had no (or so very little) time to impact others who (should have? would have?) loved them.  That part of the hurt is so difficult to put to words.  Imagine being the mother of two beloved sons who essentially had no obvious impact on the world,... who had very little identifiable impact even on their own extended family and friends.  My love for them is the same - unconditional and everlasting.  They are always on my mind.  But, the memories "to hold on to", which Hallmark proclaims will counterbalance the devastation, are so few.  The ability of my two sons to bring joy, to change and grow and continue to surprise, is completely non-existent.  The concept of a meaningful life for Zachary and B.W., so cruelly unfulfilled.  In so many ways, and over a period of years, I had accepted that it was this way for B.W.  So, to be facing the same reality for Zachary now, just feels unbearable.  A complete and shocking mockery. 


Note: I am not saying that losing a child later in life is in any way less painful, or that any cropping short of a child's life is more tolerable for a parent.  I am sure there is much about a son or daughter's future to grieve, even for a 90 year-old bereaved mother.  But, this seems to be an extremely burdensome element of my grief, and I am having a particularly hard time coping with it after Zachary's death.  I would do anything to have had just one Halloween, just one holiday, with my Zachary. 

Sunday, October 26, 2014

Brutality of should have

This is not how it was supposed to be. 

Middle of the night wakings should not provoke painful grimacing, weeping, arms still foolishly aching.

Mail regarding my nine month old should not include an invitation to remember him during a memorial luminary service.  Mail for Zachary should not come from a funeral home.  

Photos of Zachary should not have stagnated on January 20, when he was just two weeks old.  I should not have known from experience that I'd want a few photos from his funeral.  We shouldn't need alters, memorials for our infant son. 

Flowers sent by my husband should not signify various death anniversaries, milestones missed, acknowledgement that he continues to hold my hand through our sorrow-filled days.

Zachary's things, so much of it unused by him, should not sit in piles in various locations in the house.  Blankets that held him, that smell like him, should not have to be preserved in plastic freezer bags. 

I should not be filled with anguish at the wholeness and happiness of others, at the bizarreness of the normalcy that exists for everyone around us. 

Zachary..., his remains,... are not supposed to sit in an urn on our bedroom dresser..., beside his brother's remains!

I should not be spending my time at support groups.  I should not have to express my love for my son through my grieving. 


Babies less than half Zachary's size, born with tremendous health and developmental problems, are put on maximum life support, and somehow go on to survive and delight their families.  They are called miracle babies.  None of that language was ever used in description of Zachary, who didn't need - should never have needed - a miracle.   

You're taking this one home.
Let's feed him and get him home.
He's so strong. 
He's amazing. 

From one of the nurses who cared for Zachary only after he became ill:
I heard he was doing so well, was so strong.  I just can't believe it.  It's unbelievable. 


Oh, how I miss that little person.  My Zachary.  How I ache to relive the fourteen days we had together.  How I miss the whole life we should have had with him. 

Monday, October 20, 2014

Nine months dead

We received a brand new, never before seen, medical bill on Friday.  For a single x-ray of Zachary's chest on January 15.  I barely made it to the kitchen island to unload the mail and collapse myself there when I saw the radiologist's return address on the outside of the envelope.  Inside:

Date: 1/15/14
Patient Name: Zachary
Description: Chest Xray
Charges: $156.00
Insurance Pending: $67.00
Patient Balance: $42.92

Payment of account is due within 10 days of receipt of this statement.

Really?!  Nine months.  You took nine months to get this bill to me, and you think it's as simple as writing a check within the next ten days?  

If you could only see what happened to me to see his name in the Patient column.  If you understood that on that Date of Service, my healthy baby was diagnosed with sepsis, something he acquired in the healthcare environment in which your technicians practice.  If you only knew how your invoice brought back the feelings of full expectation I still had for him on that Date of Service, the fear that began to grip me over the course of that day as his condition worsened.  They had to intubate my baby that day!  By the end of that day, there was so much intervention where there had been so little.  Your technicians had to come back several times, that day and until the day he died, to scan his lungs and abdomen.  If you could just understand that it was the (official) beginning of the end for my Zachary.     

I have paid you so much already.  For something like 30 x-rays and scans combined.  I spent months combing through his medical bills, making pained calls to you and others, after which I would sob and scream and sob some more.  It drained me.  But, I paid all of them.  All of them.  After I assumed that all of the bills were paid, all were reconciled with the insurance company, it took me a few more months just to file them away.  To file away the precious evidence that my son was here for two weeks and needed medical care. 

None of your scans or x-rays, none of your measuring or calculating, saved him.  And still, and of course, I paid all of his bills. 

But, you must stop this nonsense now.  Please flag Zachary's patient account file folder, your electronic files, with a big fat DEAD.  He is dead.  He has been dead for nine months today.  I will not be paying any more tardy bills for my dead son. 

Thursday, October 16, 2014

Family photograph

In the fall of 2012, I thought I might finally be ready to attempt a "family" photo.  We would hire a professional photographer to take some posed but mostly documentary style shots.  We would choose a beautifully landscaped location, maybe a forest preserve decked out in autumn's color palate.  Our clothes would be carefully staged to appear casually thrown together, not matching, but not clashing.  One of the scenes might be the three of us holding hands, C.T. between B and me, walking down a winding gravel path, a canopy of colorful leaves above us.  For another, C.T. being pushed on the swings at the park, his head thrown back in laughter.  A couple of the photos would be selected for our Christmas card.  We'd choose our favorite family photo and have it framed for the fireplace mantel.  I identified a photographer that my sister had used, and after she gave him a primer on our family, he seemed open and willing to think about how we might include B.W. - or his memory - in at least a few of the photos.  

The photo shoot never happened that year.  Guilt and regret that we were doing it without B.W., fear that it would just feel too incomplete, paralyzed my attempt to follow through.  We have plenty of photos of the three of us, often with some B.W. memorial element somehow included, purposely or inadvertantly.  But there was always this nagging reluctance to go through the process of declaring a "family" photo shoot, with a professional photographer,... I don't know, I just couldn't do it.   

You see, that has always been the issue.  B.W. was our first child, the one who made us a family in the traditional offspring-required definition.  And, he has always been dead.  We never even got a family photo with his dead body.  A professional family photo after B.W.'s death, with C.T. present in our lives, just never felt quite right.  I've never known how to adequately incorporate our dead son when he is just so absent.  So many of the ideas I've seen or heard from other bereaved parents were just not me, not us.  So, we've never had one taken.  Not one professional photograph of our "family".

In the fall of 2013, I remember revisiting, ever so briefly, the idea of a real family photo.  Pregnant with Zachary, and having already waited so many years for the concept of a family photo to sit somewhat tolerably, even then I rationalized we would put it off one more year.  I wanted to wait until Zachary was here safely and could be part of the photograph.  Four out of five family members in the photo seemed slightly more palatable than three out of four.  In my bereaved-mother mind, I told myself that my family would, in all likelihood, be more complete in 2014.  And, it was.  For two weeks, when Zachary was here, it was. 

At that time, children were not allowed in the NICU.  And so it seemed obvious that a family photo (including C.T.) would have to wait until Zachary came home.  And honestly, because Zachary was almost fully expected to come home whole and healthy, it never crossed my mind to hire a professional photographer to come and take photos at all, even just of Zachary in his infancy.  We were also told not to bother his preemie eyes too much with photos and flashes - that we'd have a lifetime to pester him to giggle and smile for the camera, that I should focus on fattening him up so that he could go home.  

In the midst of the calm, when Zachary was healthy, we don't have a single (of course, incomplete) family photo of me, B, C.T. and Zachary, together.  Then, full expectation was violently downgraded to holding on to hope, and then crushingly surrendered to removing Zachary's life support.  The couple of photos we have of the four of us are from the days when Zachary was very ill, and we were unable to hold him, and then from the day he died in our arms.  I was certain to bring B.W.'s framed hand and foot prints to the hospital on the day Zachary died so that his memory would be part of the few unsatisfying images we do have with our "family". 

I wish I would have asked the professional photographer for a couple of staged photos of us that day, before he actually died.  Because the photographer's approach was documentary style, so as not to interfere in our last hours with Zachary, the only decent staged photo we have with the four of us, plus B.W.'s prints in the background, are from when Zachary was already dead.  Our faces absolutely broken and spent, a dead Zachary in my arms, a memorial to another dead son in the background.  It just doesn't get more fucked up than that. 

I hate it.  I can't put words to how much I hate it.  It burns me to my core to be cheated of the lives of my two children, and to have ONLY brokenness highlighted in our few "family" photos.  Something that is so natural and normal, that is usually pride and joy inducing, for families to have and share with others, is truly a dagger in my broken heart.   

Tuesday, October 7, 2014


The car seats intended for Zachary, lined up in the spare bedroom, sit empty and collect dust, stare out at me every time I pass that room of the house.  The unfinished business of ensuring each make and model still meets safety standards sits idly, pointlessly, on my (pre-tragedy) to-do list.  What will I do with his car seats?  If I move them even one foot from where they exist, my precious baby will go from healthy to intubated, starved, drugged, paralyzed, then on the mend, suddenly with a fatal brain hemorrhage and finally dead, all over again, in my mind.  I feel frozen and bitter about Zachary's unused things.  I don't want to donate them to some other baby.  I refuse to accept that he no longer needs them, that we will never bring him home.   

His email archive is consumed with the sad and the sorry.  The congratulatory and well wishing emails were overtaken by condolences, funeral preparation exchanges, communication with the hospital and doctors, memorials and messages from people who continue to remember Zachary in the months since his death.  I have to scroll down, pages and pages, to January 14, his eighth day of life, to see remnants of a purely positive outlook.  I remember setting up his email archive in the middle of the night, in our hospital room, after he was born.  I announced he had arrived, on caringbridge and through email, and the congratulations poured in.  The cord blood company began bombarding us with messages about payment and the process for retrieval the next day.  To keep it all straight, I had to create a designated space for messages concerning Zachary.  Gratitude and peace filled my usually cautious heart as I typed his name to that folder.  On that night, and as the days unfolded, I believed I would be storing bits of information for and about Zachary, for years to come, in that archive.   


If I focus really intensely, if I wade through and beyond the thousands of jagged pain points of my shattered expectations for him, if I briefly set aside his sudden illness and the horror of his suffering, I can close my eyes and actually see him, feel him, almost perfectly.  Those precious feet, pushing against my hand, strong and full of life.  Fingers closing one by one on mine.  Those raised eyebrows, wrinkled forehead.  Wide, searching, innocent eyes.  Holding him, whispering in his ear, breathing with him.  His tension totally melted away by the recognition of my voice, by the presence and warmth of his mama.  He was so beautiful, my Zachary.  I still don't want to let him go.  I feel heavy, like lead, with missing him.   

Zachary would be nine months old today.  It has been nine months since the most amazing day of my life.  How absolutely wonderful life would be if he were here with us today.  I'm so, so tired of this tortuous reality.  Every day, another without him. 

Sunday, October 5, 2014

He who remains

Friday was his fourth missed school day in the last two weeks due to two prolonged episodes of nasty cold/viral symptoms.  

On Friday afternoon, I call B at work with the good news that C.T. has actually fallen asleep for a nap, something he almost always refuses to do, even when he feels terrible.  B pauses.  There is a barely noticeable catch in his voice: Are you sure?  I need no clarification.  I hear the fear, the obvious translation grips me despite the miles between us.  Gretch, he might just slip away too.  Please check him.  Make sure he's still breathing.  Make sure he is alive. 

I peek into his bedroom several times over the next hour.  I watch his chest rise and fall, reassuring myself and B that he is okay.  After his nap, when it seems C.T. may have turned the corner on this second illness, he suddenly spikes a fever.  He doesn't want to eat or talk or do anything other than cough, whimper and lay still.  My thoughts quickly spiral from concern to excruciating panic and fear.   

A virulent form of strep?  Bacterial meningitis?  What symptoms have I missed?

Oh God.  Are we going to lose him TOO?!    

And in that honest, raw, desperate place, I just know my C.T. - the only one who remains, the one who sustains B and me, just barely, beyond Zachary's death - may die. 

I don't pray for him.  I make the only move that makes any sense to me anymore.  I get myself together, acknowledge that I don't fully trust my judgment.  I calmly ask my neighbors, who are both in the medical field, to come and see C.T.  I ask if they'll listen to his chest and help me determine if I should take him to urgent care since it is now after hours at our pediatrician's office.  And then, after they unknowingly soothe the immediate strangling, frantic fear, after we're gently assured that an ER or urgent care visit on Friday night is unnecessary, we take him to the doctor on Saturday morning.  He has developed bronchitis, which shouldn't be too concerning, and will probably spike a fever on and off, for a couple more days, even with precautionary antibiotics.  I smile and thank everyone along the way for their help, for their kindness, concern and input.  I go and fill the prescription for C.T. and we talk about how he will be feeling better in no time.      

But I know.  I know how badly this could have gone for C.T.  I know how badly it might go next time, or even tonight, with what appears to be a 100% curable diagnosis.  Zachary was almost fully expected to live and thrive.  Then, even after he acquired sepsis, and after he survived the first critical 48 hours, it looked like he was going to recover.  But, he died.   His illness and death left everyone, including all of his doctors, dumbfounded. 


We live in constant fear that C.T. will precede us in death.  I think about it a lot when I'm driving alone and when he's away from me.  I think about all of the ways that C.T. may be taken from us.  And not in the theoretical, I've had a close-call with my child sort of way that so many parents seem to have experience with.  Our fear of his dying, our desire to keep him safe, doesn't simply keep us on our toes, ensuring that we take reasonable measures of precaution.  It doesn't remind us of how fortunate we are.  In the aftermath of Zachary's death on top of B.W.'s death, it is difficult to imagine that C.T. will outlive us.  Our fears about the lives of our children have materialized, in reality.  Twice. Two of our three sons are dead.  It feels like death has set up camp in our family's home and waits to exploit any weakness, any illness, any errors in judgment.   

When you've heard these words spoken about your child, the words with no hope left in them, that describe a prognosis with absolutely no remedy... 

On September 30, 2006
You say you heard his heartbeat just a couple of days ago?
     I'm sorry.  There is no heartbeat.
          Your baby boy has died.  There is nothing we can do. 

Between January 15-17, 2014
Zachary has something called a gram negative bacterial infection. 
     We've started four broad-spectrum antibiotics.  We can no longer feed him. 
          He is now having trouble breathing.  We need to intubate him.
               He needs fluids.  Blood and platelets.  Pressors.  Sedatives. 
                    He is fighting too hard.  I'd like to medically paralyze him so he doesn't desat.
                         He has a 50% chance to come through the sepsis.
Things are looking much better.  He has made it through the worst of it.
His vitals are much improved and his oxygen requirements are decreasing fast.
The last blood count marker we were hoping would improve, has. 
I think we may have turned the corner.  This is very good news!
                         Things are not looking good.  It is bad.  Very, very bad. 
                              Zachary has developed an extremely rare grade four brain hemorrhage.
                                   There is midline shift of the contents of his brain.
                                       Our recommendation is to remove Zachary's life support.
                                            He may die on his own.  I'm so sorry.
                                                 In the meantime, put some thought into a DNR order.

If words like these have been uttered about your child (and for us, about two of our children, in separate instances and due to different circumstances).  When against all expectation, your child has fallen on the wrong side of the statistics.  When the worst you can imagine has actually happened to your child, to your family.  If your child is dead and will never again be present to bring joy or light or hope to your family. Then you know.  Then you understand, with a clarity that may seem crazy and dark and irrational to outsiders, that what appears to be "just a fever" can ultimately mean death.  
I am certain that most people can't fully appreciate that this is our way of thinking, our reality.  I am also quite sure that none of those people have actually lost a son or a daughter.  And definitely haven't lost two children.   


Our sick boy, who is, at the time I'm writing this, asleep on the couch with a (new) spell of nausea along with his bronchitis, woke up early this morning to draw something special for his dad and me.  In his bedroom, before we were even awake, C.T. created these renderings of tattoos he imagines us getting. 

He bounds into our bedroom... Mommy, daddy, you have to choose "yes" or "no".  Do you like the tattoos I designed in memory of Zachary and B.W.?  Do you like the "we love you" with three hearts?  Can tattoos have color?  If you don't want those colors, you can pick something different.  You can get one on your left arm and one on your right.  

They look like some form of dead-brother currency to me, but I'm touched at the precious thought and his early morning artistic effort.  We both check the "yes" box and agree to think about getting the tattoos. 

This boy, our C.T., is so special, so loved (and all we have left on this earth).   

Sunday, September 28, 2014

In memory of B.W., at (almost) eight years

You were not a pregnancy loss.  You were not a fetal demise.  You were not "a stillborn".  You are not defined by what happened to you, by the circumstances of when and where you died.   

I do not love you less because I have fewer memories or because I didn't know you in the sense that parents desire to know their children.  On the contrary, and because my love for you is equal to the love I have for your brothers, my grief is often more bitter at the enormity of the missed opportunity. 

Your death is not easier to stomach because you died before you were born, or before some arbitrary point in time when a son becomes worthy of a mother's unconditional love, worthy of her grief.  

Your death was not redeemed with C.T.'s safe arrival in our lives. 

People feel they need to believe these things, sometimes say these things, to assuage their own fears about the death of a precious baby.  I often wonder if they actually consider these presumptions to be comforting to the person whose son or daughter has died.  I remember each and every time that someone demeaned your life (intentionally or not) or minimized my grief over losing you.  The wounds from that kind of ignorance have left many additional scars on your mother.     

You are my son, my firstborn.
You were a whole person, so beautifully and miraculously made.
All of your organs formed and perfectly placed.
You had fine and plentiful dark hair. 
Tiny eyelashes, sleepy baby crevices beneath your eyes. 
You had my lips and ears, your dad's eyebrows and long, beautiful fingers.
You had so much potential

I would have given my life so that you could have lived yours. 

I will always grieve the loss of your precious life and secondarily, the child, adolescent and adult you would have become.  I am so sorry that my body failed to keep you safe.  I still want to protect you and mother you, and the only way I know how to do that is to keep your memory alive.  I am still in disbelief that I must now do the same for your brother Zachary. 
In just a few days, you would have been eight years old. 


(In the photo above is a hand-crocheted pillow, made by a friend, as a gift on C.T.'s birth, six and 1/2 years ago.  Notice the beautiful tribute to C.T.'s deceased brother B.W., in the bear's sweater.)

Wednesday, September 24, 2014


There is still so much about this grief that I cannot comprehend.  So many complex pain points swirl around and around in my head, rendering me unable to think of anything else.  Layers of embitterment seem to grow and calcify as reality sinks in.  Sometimes it feels like it's edging out the beauty that I know existed in our brief two weeks with him.  A desperate series of questions, with no answers and no chance for meaningful resolution, has me on circular loop.   
Why didn't they listen to me? 
Why did I leave him that night?
Did I really not bring my baby boy home from the hospital?
Was that me who allowed them to remove his life support?
Should we have waited longer for a miracle?
How is this my life?
I sometimes fantasize that the life I'm living now is actually the dream.  I imagine that Zachary reappears.  In our home, at his current age.  We are at the kitchen table having dinner and suddenly our dead boy is there, alive in the flesh, in his infant car seat.  All three of us are stunned.  A commanding voice tells us we should forget the events of January 20 and beyond.  That a terrible mistake has been made and our son has been returned to us.  Of course, we recognize him - now eight and 1/2 months old - and take him into our arms without asking another question.  I don't even think about asking if B.W. will return.  I don't want to get greedy.  I am overcome with pure joy, as I kiss all over Zachary's precious face.  I am not bothered at all that I have missed eight months of his life.  We start living our life again immediately.  Together.  

I guess it's a coping mechanism, a moment's break from the relentlessly intense pain of coming to terms with Zachary's death. 

Sunday, September 21, 2014

The after

A few weeks ago, I attended a talk given by author, activist and former Sierra Leone child soldier, Ishmael Beah.  As soon as I saw it advertised through the website of a local bookstore, and despite the fact that I hadn't yet read Beah's memoir, I knew I had to be there.  Seeking out stories of suffering, and in particular, stories of child suffering and death, of parental grief, seems to be one of the ways I'm coping with Zachary's death.  I seem to need to hear, over and over again, that despite the cacophony of rainbows and butterflies that disorient me day in and day out, Yes, it IS that bad.  I need to see my disillusionment, my rage at Zachary's suffering and death, reflected back to me in the lives of others.  I want to reach out and touch the tragedies and traumas of others, observe how (and why) those who remain go on with life.  I need to know that I am not crazy. 


For background (having now actually read the book)...
Beah's first book, A Long Way Gone: Memoirs of a Boy Soldier, which is now required reading in at least some U.S. high schools, painfully recalls how his peaceful childhood dissolves when rebel forces sweep across the Sierra Leone countryside in 1993.  He is left orphaned and wandering alone, at age twelve.  For months, he struggles to find food and shelter, to keep moving to escape the violence, as he comes to terms with the fate of his parents and siblings.  By age thirteen, Beah is picked up by the "government" army who ultimately forces him, and several other orphaned boys (one as young as seven), to become soldiers, under the brainwashing that they must serve their country and avenge the deaths of their families.  The boys are given drugs to ensure they don't tire, and to numb any lingering fear about killing or being killed.  They are haphazardly trained and sent out to ambush, then to confiscate the ammunition and supplies of, groups of rebels and civilians.  It is a kill or be killed environment.  Trying to live to see the next minute becomes status quo for Beah and his child peers. 

After three years of drugs and brutal violence, sixteen year old Beah, and others easily identified as children, are removed from the fighting by UNICEF.  Severely battered, with virtually no humanity left in them, these children are "rehabilitated" and then thrust back into society with distant relatives or bounced around in foster homes.  Beah eventually has an opportunity to represent the plight of the children of war (in Sierra Leone) at the United Nations, in New York City.  After that trip, while still a child, Beah begins the lengthy struggle to escape his war-torn country and to start a new life in America. 


With the opportunity to hear him speak first-hand, I was really hoping to hear how Beah copes, how he is able to truly participate in life after the loss and traumatic experiences of his childhood.  I wanted to know: How do you live in this world, live a normal-ish life in a country that is not your own, a life amongst innocents, when your entire family has been murdered in the midst of war?  When, as a child, you were forced to slaughter other human beings?  How do you live in the after? 

As I suspected, and really this point seems too obvious to acknowledge, the loss and trauma of Beah's childhood is absolutely the lens through which everything is seen and approached.  There are nightmares and insomnia that must be battled.  There is frustration with others' perceptions and uninformed, unsolicited opinions about his home country, his family, the war, his experience as a child soldier and his memoir.  There is deep lasting sorrow and debilitating guilt.  It is difficult to form real relationships, to trust.  There is no easy way to start a conversation with people, to allow information about family and history to be conveyed simply and succinctly.   

Beah attributes his ability to survive and thrive in the after to the resilience of his youth at the time of his escape.  Over time, he begins to feel safe again and learns to cope by embracing and educating others about the horror of his past.  By writing, by speaking out on behalf of children affected by war, and by helping former child soldiers reintegrate into society through his own foundation.  While it might seem like this is the rationalized "something good" that has come from Beah's suffering, he was quick to share that in 2014, there are still thousands of child soldiers being forced to fight, in up to 50 conflicts around the world.  It is staggering and sickening and we are, in our first world busyness, so incredibly insulated from the cold hard reality of the situation and from the individual people and families affected by it.   


B and I ask each other daily how we will cope and live beyond Zachary's death.  The life and hope we created from scratch in the years after B.W.'s death has been blasted to bits again.  We are stripped bare, with nothing recognizable except for C.T., our home and the family and friends who have not given up on us. 

I am too paralyzed with grief to think deeply about how my life will matter, how I will thrive, after Zachary's death.  When I make too many plans, someone in my family (one of my children) usually dies.  So, I'm going to play it safe for now and continue to simply cope, day by day.  And if you're a bereaved parent, you know that is a daily struggle and commitment.  I'm going to allow the morsels of survival and hard-earned hope I see in stories like Beah's, in the stories of other bereaved parents, to ruminate in me and see if, over time, something of value, something beyond survival, emerges. 

For now, eight months out (and almost eight years out), the after is truly about putting one foot in front of the other.  

Friday, September 19, 2014

Birthday letter

Dear B,

Do you remember the 30th birthday party I threw for you, nine years ago?  Before children.   Before September, and both of our birthdays, became predominantly a prelude to the anniversary of B.W.'s death and birth.  Before grief became a constant companion in our life together. 

I cannot look at photos from that birthday.  It is too painful to see the old you, the old me - twice over, former generations of us.  Do you think we would even recognize ourselves?  I am sure there is an effortless confidence in our faces.  An ease of relative happiness and stability, diluted only by the disease and divorce in our respective families.  Some of the people I remember being in those photos are now completely absent from our lives, casualties of our devastating loss and their impatience with our grief, with the new us.  Perhaps those losses are for the better, but it still hurts.

Today, on your 39th birthday, in the year of the death of our Zachary, I wish I could protect you from the Happy Birthday(s)! you will receive.  C.T. and I know it is not a happy day.  In our home, it will be recognized that this is your most painful birthday yet.  Your grief, your dead boys and this first birthday without Zachary - the wound still so, so fresh - are not invisible to us.  We will not force happiness or celebration on you today.  We will love and embrace you in whatever form you come home to us tonight. 

I've been thinking about the words of our support group leader.  The woman who said that the death of a son or daughter closes the door on the former us.  That on that devastating day, we become like infants again.  That we must re-learn everything, must experience and perceive everything afresh.  You know, I appreciate this analogy because from our experience, I think it is so very true..., and honestly, utterly terrifying that you and I are forced to do it all over again with Zachary's death.   

Know that I love you and I will stay by your side, for this and all future birthdays, as we grieve and re-create our life in Zachary's absence.    


Thursday, September 11, 2014

Wishes from the dead

He would have wanted you to be happy. 

I have encountered variations of this phrase over and over, through the years.  I've observed it from afar, spoken at funerals, in movies.  Sometimes it comes out of the mouths of the bereaved themselves, a grief catch-phrase used to describe the coaxing required to go on with life.  It seems to be presumed that there is some comfort in this idea that the deceased would (want to) propel the bereaved beyond their grief..., to an existence where happiness resumes as dominant.      

I can see how, at a surface level, this thinking appears to provide some encouragement for the bereaved.  Particularly if the death in question happened according to the natural order of things, where grandparents precede parents, who precede children, in death.  I think most people would agree it's realistic to assume that the former generation would hope for their children and grandchildren to be happy, even in their absence.  The bereaved might actually be able to visualize the words coming from the lips of the deceased, may have even heard him/her impart this notion at one point, before or during the dying process, if it wasn't sudden.  But does the plausibility of this thinking actually lessen the grief experienced or hasten the "return to happiness" for the bereaved?   I don't know.  Maybe, in some cases, it is possible. 

Or maybe it's just another way that society ensures that the bereaved don't outwardly wallow too much or too long, cleverly disguised as a "wish" from the departed.  I mean, the dead really have no say in it.  Maybe it's a way we are accidentally perpetuating the western world's obsession with happiness.  People seem to like to have something positive come out of something viewed as negative, and so it is generally accepted as a comfort to the grieving.    

Whatever it is and wherever it originates from, when someone suggests that Zachary would want me to be happy, it tends to strike me as a smoothing over of my very real grief and my need to actively and intensely grieve his death.  Also embedded in the suggestion to be happy despite the recent death of a loved one is the subtle idea that grief and happiness are mutually exclusive.  That if you are grieving, well then you are the opposite of happy.  And ultimately, you will return to a state of relative happiness when the grief has alleviated.  For bereaved parents, who will perpetually grieve their deceased child(ren), this implies that they will never again have happiness.    


Would Zachary want me to be happy? 

I don't know.  I don't think it's fair to put this on him.  He cannot speak for himself.

I will tell you what I do know.  I will tell you precisely what Zachary wanted.  And what he wanted has broken my heart.  

On Tuesday, January 14, on his eighth day of life, Zachary wanted someone to hear his moaning, his cries of pain.  He wanted his mama.  He wanted to be fed.  He wanted to be rid of the restlessness and agony that kept him awake throughout the day.  My sweet, helpless baby wanted someone to DO something to make him feel better.  He tried everything within his infant abilities, to show us.  On Wednesday and Thursday of that week, he wanted that ventilator gone, the full-body pain to stop, the needles to stop bruising him.  Until he could no longer show us what he wanted because he was medically paralyzed and heavily sedated. 


For me, the idea that Zachary would want me to be happy fails to create an illusion of peace around the horrendous circumstances of his death.  I am just as shocked and devastated, even if it were true.  I still rage at the senselessness of his suffering and his death.  I am still as broken by the reality that we only had two weeks together, that I won't mother him as he grows up and becomes a man.  I am still filled with sorrow that I can't see and touch and hold him each day.  I still want him back. 

I am grieving.  And right now, it is intense.  Happiness is not even attractive to me anymore.  In fact, happiness repels me..., even as I believe that grief and bits of happiness can feasibly co-exist.   

If I'm honest though, I don't think Zachary (with his now eternal wisdom?) would wish me happiness above all, anyway.  I am pretty sure happiness is not the thing I should have highest hope for, as I strive to live my life, to honor Zachary's and B.W.'s memory and to raise C.T.  My gut says that I should be living my life authentically (my grief, a part of it) and work towards purpose and meaning.  And, if and when bits of joy and happiness present themselves along the way, I should take them, be thankful.