Sunday, June 29, 2014

Morning greetings

In moments of early morning half-consciousness, well before I need to wake, I notice the lead weight of reality sitting on my chest.  Reflexive panic surges down through my arms and legs, my head contorts uncomfortably, while I struggle to summon the strength to get out from under the dreaded, briefly unidentified load.  I want to continue sleeping, to delay the sorrow and emptiness that I know, with sickening familiarity, will come, and stay all day.  I squirm, attempting to salvage space for air to enter my deflated lungs.  I will the weight to please, please slide off, please leave me be.  But it is already too late.  I am awake.  The shock of it has already worn off.  The weight will not move.  I remember that it is permanently affixed, fitted precisely to my form, around my chest and neck, over my shoulders.  Fused where clasps might have allowed me to loosen or remove it.  I will need to carry it all day.  Again.  Always.

Yes, you remember.  Zachary is dead.  He was here.  He had his health for just one week.  No one listened to you when you saw the symptoms, when you knew something was wrong.  He tried to show you, to show them, that he was hurting.  They thought you were over-reacting, his symptoms explained away.  You left him that night when you should have stayed.  He was suffering.  He needed you and you couldn't help him.  He suffered more in those last six and 1/2 days than you have in your entire life.  You allowed them to remove his life support.  He is dead.  Your beloved baby boy is dead.  You have two dead sons. 


For me, there is something particularly awful about coming to full consciousness each morning.  I'm forced to realize, over and over again, that Zachary is gone, that I will face this, and all future days, without him.  Sometimes I allow C.T.'s alive-ness into my heart, his Good morning, mama, to bring me a smile.  B tells me I'm so sorry each morning, reminding me that he is in this with me, that he feels Zachary's absence, this grief, as tangibly and painfully as I do.  I wish that B and C.T.'s presence could lighten the weight of this leaden grief load.  That our love for each other, our willingness to carry it , together as a unit, would help.  But I know it doesn't work like that.  The three of us have our own, individual grief.  And despite the bits of light and happiness B and C.T. bring me, they will not, and shouldn't be expected to, lessen my grief over Zachary's death.  The loss of my son is not something to be lessened, ignored, masked or medicated, if I can avoid it.  I have to learn to live with it.   

So, every morning, I begrudgingly surrender to the lead weight on my chest.  I haven't adapted to how unbalanced it makes me, to what it restricts me from doing and being, to how exhausted I become because of it, to how unnoticeable it seems to be (to others) despite it's crushing weight.  It is much heavier than the weight I carried when I had only one dead son, although I can hardly remember, even tolerate, thinking of myself in that state.  (It's strange and disturbing to be pining for the days when my burden was the death of just one of my children.)  Maybe one day in my future - truly, I wonder when - the weight of my new reality, without Zachary, won't shock, horrify and debilitate me with each new morning.

Friday, June 27, 2014

A photo post

I realized that the only photo of Zachary on my blog - my profile photo - is from the day he died, at two weeks old.  There are fewer photos from his first week (of health) because we were told not to bother his eyes with the camera flash, that we'd have a lifetime of moments with him to capture on camera.  In hindsight, of course, it pains me to have so few photos from that first week, when Zachary's health was stable and improving, his outlook so promising.  Below are a few favorites of my sweet, healthy, Zachary...

My Zachary, on the day he was born


Snug in his isolette and holding my finger


Zachary and mommy, on his fourth day of life
That's all.  I miss him so much. 

Sunday, June 22, 2014

Summer, back to the three of us

It has hit me really hard these past few days.  This season, in stark contrast to the winter season in which Zachary lived his entire life and then died, seems to have slammed the door on my baby boy's existence.  Birds cheerfully announce the arrival of each new morning.  The days are long and warm, allowing for more activity, fueling the expectation that we'll do something "fun", or at a minimum, something productive.  Storms roll through, and despite their violence, coax each living thing to grow, flower and produce.  The patio door is opened and shut a hundred times each day, as C.T.'s friends, and his growing independence, beckon him to play and explore outdoors.  Playgrounds, beaches, zoos, pools and parks are filled with happy mommies and children.  Parties and barbeques abound - everyone eager to soak up every bit of summer break.   

Zachary is dead.  No matter.  Get up, get going and enjoy your summer.  

The truth is, I just can't do it.  I get dressed, I feed my family, I spend quality time with C.T. and our household runs smoothly, to some extent.   But, I can't pretend that summer has lightened the crushing weight of Zachary's death or lifted my spirits out of the depths of grief.  He is still dead, and I am still his loving and deeply bereaved mother.  It has only been five months and I miss him terribly. 


A couple of nights ago, as I was laying with C.T., doing the bedtime routine, he says...

Mama, you see this space between us?  I'm pretending that Zachy is laying here with us.  I would keep him from falling off the bed on this side and you would keep him from falling off on that side.  He would really like to be between us, don't you think? 

I sigh and assure C.T. that Zachary would have loved to be involved in the bedtime routine. That it would have been wonderful for all of us.


The three of us are right back to where we were at the beginning of last summer, except that there is no hope for Zachary.  There is no more Zachary.  There is only the loving and the missing and the mourning what should have been.  It's just the three of us again, this summer, and although I'm thankful to have B and C.T., it still feels completely wrong that Zachary is not here too.  

Saturday, June 21, 2014

Others remembering Zachary

During Zachary's funeral service, my husband spoke these words.

Please remember Zachary.  Tell us when you think of him.  Speak his name out loud. 


When we worry that everyone has forgotten him.  When no one, but us, has uttered his name in days.  When it hits us for the 1000th time that we are the only ones who feel his minute-to-minute absence.  Sometimes, just when we need it, morsels of Zachary-remembrance appear out of nowhere...        

A framed photo of me and C.T., Zachary's name in the sand, from a fellow bereaved father, as a gift for B on Father's Day.

A doctor we know, unaffiliated with Zachary's or my care, who says he's inspired to be a better doctor after witnessing our love for Zachary.  He carries Zachary's memorial card in his pocket each day. 

Jewelry that acknowledges all three of my boys, from a friend. 

A healthy meal, made and delivered weekly, my friend saying that regardless of whether we still need that kind of help, she wants to remind us of the impact Zachary has had on her and her family.

A giraffe ornament (Zachy's animal) from my mother.   

Heartfelt words about Zachary, and our family's loss, from someone I have never met in person, a client of B's, who has made a point to send another card.   

A hand-knitted giraffe Christmas stocking for Zachary, commissioned by a friend.  

An opportunity for kids in C.T.'s class to contribute to a Zachary remembrance book, organized by a friend.     

Flowers in memory of Zachary and breakfast fixings stocked in the refrigerator, from my sister, upon returning home from our botched Caribbean trip.  She knew coming home (once again, without Zachary) would be hard. 

...These are just some of the more recent Zachary memorials.  And they don't speak to the countless memorials in the immediate aftermath of his death, or the more regular forms of remembrance that quietly sustain us, day after day, week after week. 


A few people have been moved to do something for their communities, in memory of Zachary.  Each gesture has warmed our hearts, that we have family and friends who care enough to memorialize him. 

My friend, Sara, ran her first half-marathon in memory of Zachary, and then made her race donation to an organization that we care about (Humanitarian Service Project: same as I referenced in my post, Knowing my children).  It was so special to see her holding a poster with photos of Zachary, his life seen as an inspiration.   

Two of B's aunts, Dede and Debbie, joined up with other bereaved families at a 5K fun run, in memory of Zachary and B.W.  The Little Warrior Fun Run, held near Birmingham, AL was an inaugural event sponsored by the parents of Wyatt Parker, who died at four days old in October of 2013.  All donations went to a local medical auxiliary group that helps families navigate the unthinkable, in and through the death of a child. 

Another friend, Kerry, was inspired to involve children in her community to do a sewing service project, in Zachary's memory.  Pre-K and kindergarten children helped sew "love-y" dolls, and first through eighth grade students sewed blankets, all of it donated to the local children's hospital NICU where she lives.  Two weeks later, Kerry also conducted a blanket drive where people were able to make a monetary donation to sustain an ongoing commitment to making blankets for NICU patients. 


When someone speaks Zachary's name, when he is remembered by gestures, small or big, we are reminded that he is loved and that his life mattered to others.  It means so much to us.     

Saturday, June 14, 2014

Knowing my children

Each year, on B.W.'s birthday and at Christmas time, we go shopping and then donate to this wonderful local organization that serves underprivileged children in our extended community, by providing them with presents on special days of the year.  As part of their "Birthday Project", on each registered child's birthday, he/she receives party supplies, toys, games, sports equipment, books, etc., based on age and any known interests.  Their "Giving Tree", which runs during the Christmas season, is along the same lines, but each child is able to provide a list to the sponsor, detailing the specific things he/she hopes to receive.  The gifts that we buy and donate on B.W.'s birthday each year are always intended to be what we (believe we) would have given him on that particular birthday.  At Christmas time, I am able to request that we are matched with a boy who is the same age that B.W. would be, to make it more memorial-feeling for our family. 

In 2009, as we walked the aisles of a toy store, searching for gifts to donate on B.W.'s third birthday, I was overwhelmed with the vast and varied options denoted as "3+".  It seemed that age three was a year of interest-explosion for the human child.  Legos, puzzles, matchbox cars, super-heros, construction vehicles, arts and crafts, train sets, transformers, Disney-themed toys, mini-sized sporting equipment.  The games aisle, alone, must have had 100 different options for the three-and-up demographic.  I broke into tears, buried my head into B's chest in the middle of the store, when I realized anew that I had absolutely no idea what B.W. would have wanted.  Which superhero would he idealize?  Would he prefer cars, construction or trains?  Would he have shown artistic tendencies, fantastic motor skills, an interest in science? 

I knew B.W.'s kicks.  I remember that he had my lips and ears, B's eyebrows and fingers.  I can picture his dark hair and the perfect crevices underneath his eyes.  I know the weight of him, the texture of his skin and hair, the soft-spot on his head.  I know the love I feel for him.  But, that is about where my tangible, articulate-able knowing of my firstborn ends.  And, because all I ever wanted as his mother was to embrace the person he was and watch him discover the world, it's one of the most painful aspects of his death and perpetual absence.  There are so few memories to cling to, his personality left completely unrevealed to me.  No one except me, my husband and our pastor, to have actually laid eyes on him, to have witnessed his beauty and potential.   


The bereaved parent support group that we've been attending since Zachary died, met last night.  In addition to the regular agenda of the meeting, the topic of the night was "meet my child" - meaning we should provide a glimpse of who our children were, putting the circumstances of their deaths to the side.  Most of the people in the room had years of memories to draw upon, which, for B and me and one other woman who lost her infant son, only served to highlight just how much we have missed because our children died so, so young.  When it was my turn to talk about Zachary (and B.W., if I had any leftover emotional energy to talk about the next-to-nothing that I know about him), I first offered a backdrop perspective that mostly eludes me, unless I purposely remind myself of it...

On C.T.'s first birthday, during his party, I had a couple of different people mention that "his personality is really coming out now" and/or "wow, he has become so ________ ".  I remember enjoying that family members were getting to know him better, but I also felt surprised that C.T.'s personality traits were perceived as being new or different, by others.  These observations, noted by outsiders to our little family unit, were things I knew about C.T. from the very beginning of his life.  Attributes that are simply part of who he is, made known to me from his very first days like some kind of electric current between mother and child.  I remember feeling proud and satisfied with my little secret.  That I knew my sweet boy better than anyone else, and from the very start.   

So, at the meeting, I went on to talk about what I could feasibly describe about Zachary, his personality, about some of our stories and experiences from his lifetime.  I was overcome with emotion and omitted several pieces that are pretty significant.  I neglected to talk about how Zachary's feistiness was colored with his opposite-of-high-strung posture.  About how he demonstrated his cool with his cocoon-breaking technique and his old-man style splayed limbs, which seemed oddly comfortable for him, even as a preemie.   My choking tears prevented me from sharing how intently he would look for my voice with his eyes.  How much it appeared he wanted to learn about this world.  Everyone in the room was as compassionate as I hoped they would be.  B rescued me and talked about B.W., about how isolating it is to be the only people to have met "him", about how it hurts that he is treated more like an event in our lives than a real person, our son, a unique individual who we just didn't get to know. 


There was also something I didn't really notice until I was thinking back on all of the deceased child descriptions, by the bereaved parents in the room last night.  Virtually all of the descriptions devoted a disproportionately large chunk of time to the child's babyhood and early childhood - each providing examples for how distinctive personalities emerged very early in life and stuck with their child throughout the lifetime he/she had.  So, I do believe there is something to the idea that the essence of a child is not something that emerges, but rather something that is.  And it seems to be known to his/her parents from the very start.  When I can actually get settled, momentarily, on this perspective, there is a bit of relief that I really did know my Zachary.  The knowing doesn't mean that two weeks of knowing him was enough time.  Anything less than a full lifetime would never be enough.  It doesn't lessen my grief that he is not here now.  And, it doesn't convince me, in any way, that his death is acceptable or purposeful.  But, it is such an honor to have known my son Zachary, in the way that only his mother (and father) could.  My heart hurts to not have had this opportunity, at all, with B.W. 


Reading back through this, it reads a bit convoluted.  Makes perfect sense in my brain, but came out maybe a bit funky.   

Thursday, June 12, 2014

Our chair

Last summer, my mother-in-law re-upholstered a chaise lounge chair for our master bedroom, which she found it at a resale shop during a road trip she took several months prior.  She sent us a text when she found the chair, wondering if we wanted it and how much we were willing to pay for it.  While it wasn't something we needed, I always thought a small chaise would be a nice addition to our bedroom space and I knew that it was a good opportunity for me to learn about re-upholstery from a master.  So, we gave the go-ahead, committed to a very reasonable purchase price and, after she literally had to temporarily saw off a couple of the legs to fit it in her vehicle, my mother-in-law drove it (a long way) home.

When I left my long-time corporate job in June of last year, and since we were expecting our third child, I decided it was a good time to focus on doing something with that old chaise.  My mind locked onto a single (secret) image, a sole purpose, for the future of the chair.  It was to be my nursing chair.  It would be the meeting place for mother and child, when hunger and comfort beckoned in the night, for those first few months of co-habitation in our bedroom.   

I visited the fabric store several times, taking swatches of solids, stripes and patterns, not really knowing what I wanted.  During my third or fourth visit, a salesperson sat with me and helped me debate the merits of the various swatches I'd selected.  She explained that one of the fabrics I had chosen, only because I liked the color and texture, was known for its durability and stain-resistance.  That certainly ticked the box for being baby and spit-up-friendly, and although I didn't make that particular requirement known to anyone, I instantly knew it was the fabric I would choose. 

Once the chair was refurbished and placed by the window in our bedroom, overlooking the backyard, I was amazed that I had ever been without it.  It was the perfect size for me, my pregnant body craving even a 5-minute respite there.  Often, I would close my eyes and imagine holding and nursing my new baby boy in that chair, his tiny fingers tangled in my hair.  I hoped I could be his sole source of nourishment, his primary source of comfort, for as long as I could. 


Instead of nursing my son there, the chaise became my pumping station for the first week of Zachary's life.  I was happy to do it.  Every three hours, throughout the night, and when I happened to be home rather than at the hospital, I'd sit and pump, holding onto the promise of the nurses that I would be nursing him, directly, in no time.  A few weeks of tube feeding was the plan, and then Zachary would have the suck, swallow, breathe thing mastered well enough that we could start nursing.  By the end of that first week, my milk had helped him regain his birth weight. 

Throughout the first part of Zachary's illness, when the septic shock had him on the verge of death every couple of hours, I kept on pumping, storing up more milk for his recovery.  One time, I had started pumping in his hospital room and suddenly, there was a whole medical team of neonatologist, nurses and respiratory therapists working to "bag" breathe for Zachary during a terrible desaturation.  I closed my eyes, tried not to fully succumb to the chaos around me and continued pumping, resigned that prayer and milk production were about all I could do for my sweet, suffering boy.  After 48 hours into the sepsis, and what looked like a significant improvement in Zachary's condition, my milk supply should have been wiped out, almost completely extinguished from pure crisis, stress and exhaustion.  The lactation specialist hugged me - amazed at the volume of milk I continued to produce while Zachary was critically ill.  She was so happy that it looked like Zachary would pull through and that my persistence in pumping would help nourish him back to full health. 

Then the earth opened and swallowed us whole with the news of Zachary's brain hemorrhage and grim prognosis.  In that suffocating place of near-defeat, I pumped milk for my baby.  While weeping and grasping for a sliver of hope and light, I pumped milk for my baby.  While planning for the end of his life and at the same time, begging God for a miracle, I pumped milk for Zachary. 

God, please see my devotion, my pure love for this child.  I will not give up on Zachary.  I am holding on, holding out, for Your mighty hand to intervene here.  But I'm hanging by a thread.  Please don't take another son, don't let another beloved child in our family, die.  Please save him.  Prove everyone wrong. 

On the day we removed his life support, my pumping continued.  I had stored up 80+ bottles of breast milk for Zachary in his designated spot in the NICU freezer, by the time we left the hospital.  Pumping during that night, in the chaise intended to be my spot with Zachary, after leaving his body with the funeral home just hours before, was one of the cruelest forms of torture I have ever experienced.   


Over the course of the next week, as we planned his funeral, I attempted to wean myself.  An abrupt stop to the pumping was not an option because my milk had reached full production levels when Zachary died.  I had to pump three times during the day of the funeral, so that I could hug mourners without wincing in physical pain.  I had to try to numb my emotions so that the sight of my sweet boy in the casket didn't elicit too many instances of untimely milk release. 


The chaise in our bedroom, my temporary pumping station during Zachary's life, will never - not once - be used for its intended purpose.  I can no longer melt into it the way I did when I had hope for Zachary.  When I believed the days of pumping breast milk were temporary and would be replaced with days of nursing Zachary there.  When the promise of bringing him home was tangible, almost certain.  These days, the chaise piles with the clothes of his broken parents.  

Sunday, June 8, 2014

Too much loss

C.T. picks out a couple of beach toys from the sparse hotel collection.

I think I just need a bucket and a sifter, mama.

Ok, sweetie, you take what you think you'll need, but let's leave some for the other kids who might be staying here...

A gentleman hotel patron suggests that C.T. snatch up the gigantic plastic shovel.  Bigger toys for bigger boys, I suppose.  C.T. resists, saying shyly that he prefers to dig with his hands.  The man seems to admire C.T.'s restraint and no doubt thinks he's a cute kid.  He smiles warmly at us, stands close to us, wanting to exchange small talk...

I have three boys of my own, at home...  

I force a smile.  Any words I might have pre-planned for an interaction like this, evaporate into the Caribbean air.  I want to tell him that I, too, have three boys, but instead I stand speechless, with C.T.'s beach toys in hand. 


It has never been easy or straight-forward to participate in introductory small talk about my family.  After B.W.'s death, it took a few years to get my mantra out relatively clean.  

Yes, we do have other children, C.T. does have a sibling.  His brother, B.W., died, was stillborn, in 2006.  Half of my heart is with him.  

If I sensed it would be a very short conversation or the person seemed unable or unwilling to hear the whole truth...

C.T. is our only living child.
(In this case, I would mention B.W. only when prompted, which was incredibly rare.  Most people were thankful I gave them an "out", by not getting specific about the loss of life in our family.  The ugliness of it too heavy for them to hold for even a nanosecond.) 

Now, after Zachary's death, I find myself entirely unable to wrap this horror-story-box-set-of-a-family-life up with a pretty bow, for the sake of casual interactions.  It's much too awful and unfathomable to live this life, much less try and explain it to a stranger.  Too painful for me to witness the shock in their eyes, to see the look of regret for having taken an interest in me and my family, or to hear their clumsy attempt to smooth over the story of my dead children, for their own comfort.      

As I develop my new public family mantra, I know that there is no right way to do this.  There is no way that I will ever feel satisfied with a two-minute portrayal of my splintered family.  If I share too little, I will feel ashamed at the disservice to my deceased children, who are equals to C.T., in my heart.  If I share too much, in many ways, I will feel like a leper, with my sad, sad story of loss.  If I provide the whole truth, some people will decide it's just too heavy and not worth their trouble to get to know me.  Some will attempt to relate by drawing comparisons to lesser losses in their own lives.  Many will change the subject, talk endlessly about their own children and hope that I never, ever again, bring up the subject of my dead children.        

But, this is not about my fumbling interactions with people out in the world.   

What festers and eats at my gut, what my failure to respond to the hotel patron only fractionally demonstrates, is that Zachary's suffering and death, on top of B.W.'s death, is honestly just too much for this particular mother to bear.  The cumulative loss I have to live with now, after Zachary's death, has tipped my internal pain scale too far.  Saying goodbye once, to my firstborn, living without him, was and is devastating.  Saying goodbye to Zachary, after having his healthy prognosis dangled out within easy reach, his first week of life so beautifully lived with us, before the torture of the sepsis and treatment, is indescribably shattering.  This double loss of life - I could never have imagined the compounding effect it is having on me, on us.     

I am at a total loss to find a way to sit even somewhat comfortably with my new life story.  Everywhere I turn, I see the image of Zachary writhing in pain, whimpering constantly, no one doing much of anything about it, on the day he developed the infection.  I remember his body pulsating with the rhythm of the oscillating ventilator that he never should have needed.  I remember his open eyes, his tongue movements as I held him and we prepared to remove his life support.  I can feel the weight of him in my arms as he slipped away, slowly turning gray and cold over the next two hours.  And then, I can't help but see B.W.'s body, already limp and cold and gray in my arms, now close to eight years ago, never having taken even a single breath outside of the womb.  But, you see, I can hardly tolerate thinking about them simultaneously.  It's just too much death, too much damage to a single family.  My Zachary.  My boys.  My beautiful boys.  Why both of them?  How will I actually live with this? 


For anyone who read the previous post about our travel woes, we did finally receive our lost bag late in the afternoon, on day 5 (of 7) of our trip.  The three of us, and all of our stuff, arrived home safely on Saturday. 


Tuesday, June 3, 2014

Trip woes

I seriously don't know how this shit happens to us.

We arrived at our trip destination on Saturday, in the Caribbean, and our primary suitcase, the one with all of my clothes, shoes and toiletries, was lost, sent to another destination back in the U.S.  B had a couple of his own T-shirts and shorts (although he is missing most of his clothing, all of his underwear and toiletries) and C.T. actually had most of his clothes in another bag that made it here, but my stuff - all missing.  No clothes, no make-up, no sunscreen, no special hair-taming stuff, no flip-flops for the beach, NO UNDERWEAR.  When we arrived, and really until yesterday when the markets and shops were actually open, all I had were the clothes and shoes I wore for travel, all of it much more appropriate for the weather in the states where there is also air conditioning.  I have been wearing these ridiculous suede loafers to the beach because I have nothing else.  There are no stores or brands here that are familiar to me, and all of it is labeled in French and costs at least two times what it would in the states. We have spent hours and hundreds of dollars just trying to find sorry substitutes for just some of the stuff that was neatly packed in our bag. 

It is now Tuesday, Day 4 of our vacation, and the bag is still missing.  They think it's in Harrisburg Pennsylvania, but the outsourced baggage customer service group (incidentally, in India!) can't get the local airport baggage employees in Harrisburg to answer the damn phone.  We have spent hours on the phone with the airline, ringing up hundreds of dollars in charges, imploring them to find and send our bag.  We have tried to reach Harrisburg ourselves.  Nothing seems to trigger action on our behalf or for anyone to own our plight.  Poor C.T. has been dragged through all of this while he should be soaking up beach time.  

I know this stuff happens all the time, but wow, how it stings on what should be a relaxing bereavement trip.  I should have worn a special button on travel day indicating that we are headed to the Caribbean because our son died.  Shouldn't there be preferential treatment for grieving families..., or at least some rule that says employees should take extra care to ensure trips go smoothly for folks like us...?  Couldn't our bags have just made it to our destination?  Ugh.  

God, I miss Zachary.  We shouldn't even be here.  We should be home with him, not spending a ton of money on a trip that isn't even allowing us the quiet time to grieve and just be together that was intended.  I also really wanted this trip to be "good" for B, who went back to work on the Monday after Zachary's funeral.  Since then, there hasn't been any block of time for him to be still in his grief, to be with us, without responsibility. 

I have much, much more to say about this, but having wasted so much time on phone calls re:baggage and on trips to random shops to "replace" items we need, I should try and salvage what's left of this trip...