Thursday, December 31, 2015

Last happy New Years Eve

On this day two years ago, we were celebrating your nana's birthday with pizza and family. 

Twenty-two days later, after you lived your entire life and left us throbbing in brokenness, I sat in a department store dressing room, staring blankly at a selection of funeral dresses and layette sets for the display of your body in the casket. 

I still cannot reconcile the before and the after, what happened to you in between those days. 

In between the New Years Eve birthday celebration and the dressing room scene, I lived a whole other life with you.  I think it must have been the most important and meaningful living I've ever done.  And now, it's over and done.

I hope you knew and felt my love, Zachary.  It means everything to me. 

This day will forever punctuate the beginning of so much fear, then pure joy and elation at your birth and health, and finally, a reprehensible series of errors that robbed you of your entire future.  I'm so sorry. 


Friday, December 25, 2015

Christmas without you

Last week, I sat shoulder to shoulder beside a mother whose arms were full of curly haired two year old.  The audience had been asked to squeeze in closer together to accommodate more show goers to the school's winter music performance, and somehow I got lodged between her and your dad.  She tried to make small talk with me and, well,... even the most surface chit-chat quickly leads to you, my love.   

My stomach churned to be forced to casually answer the dreaded question aloud, to lump you in with the dead, with your brother B.W.  It is still so wholly absurd, so wrong, that you are not here with us.   

The woman's toddler son bounced in her lap, his excitement bubbling over, when one of his sisters took the stage.  His mother shushed him gently as he pointed and called out her name.  The little boy seemed to be in awe of his sister while his mother beamed with pride.    

We ought to have had moments like that one, Zachary.   

It is our second Christmas since you died, and it is still so disorienting. 

Familiar holiday traditions, the excitement with which we used to approach them, seems to have been shattered right along with your perfect little body, almost two years ago.  Again, I could not bring myself to pull out the old artificial Christmas tree, the lights, the collection of ornaments, the myriad decorations, the playlist of Christmas music - all of the things that used to mean something to us.  Again, I couldn't bear to resurrect the tree in memory of your brother, or even any of his old ornaments; the implication that we add another memorial tree for you, our other dead son.  All of the old accoutrements to Christmas just feel like a sham, like they belong to another family, not ours.  

Participating in the "Christmas spirit" (not to be confused with celebrating the actual meaning and spirit of the historical first Christmas) feels foreign to me now.  I don't recognize it.  I don't understand it.  But, for C.T.'s sake, because he is still influenced by the stuff of Christmas, and by the enthusiasm of his friends and classmates around the holiday, we did buy a small live tree this year.  We delayed and delayed until a little over a week ago when the pickings were slim, so it is truly a sad, needle-dropping, specimen.  The tree is decorated mostly with handmade/hand-painted ornaments in your memory, a few new ones in memory of B.W. and of course, some crafty ornaments made by C.T.  This seems to be the only way I can tolerate a Christmas tree, something remotely festive, in our home. 


Christmas would be so different if you were here, Zachary.  I look at photos of C.T. on his second Christmas, when he was almost two years old, and I'm desperate to know, to concoct, to connect your 14-day life with, who you would have been on this day, in 2015.  

Like a fool, I keep wondering, pining. 

I love you and miss you.  On Christmas.  Every day. 



Monday, December 7, 2015

"Doing" the holidays

Stay away from me
with your twinkling lights
your jingle bells
your festive decorations.
Tone down your
giddy anticipation that
has virtually nothing to do with
marking the birth of Jesus,
and more to do with a couple days
off of work, the loop of carols
you can't stop humming,
how irresistibly cheerful the house looks
sprinkled with red and green. 

It is certainly not
the most wonderful time of the year. 

Doesn't my once healthy son
writhing in pain,
misdiagnosed,
treated unforgivably late,
bruised - to death - from the inside out,
make any difference?
How can the same old
holiday rituals make sense
ever again?

I can never go back.
I don't know what to do with Christmas.          

He would be twenty-three months old today.
In one month, we would be
celebrating his second birthday.
I should be planning my boy's 
birthday party.   


Sunday, November 22, 2015

Long gone lives

For as long as I've been a bereaved mother, whole, in-tact families have bewildered me. 

They play together, eat together, bicker and make up afterward.  I hear them talk about planning things together as a family.  They casually refer to their sons as the boys.  The children confidently declare how many kids they'll have when they grow up.  Birthdays and holidays are happy days and are celebrated with ease and excitement.  The difficulty in taking family photos amounts to will the little one get dirty, or fail to cooperate, or both?  Together, the family endures the difficulties, disappointments and drudgeries of life, each one accounted for and tucked safely into bed at night. 

That scenario of wholeness is long gone for my own family.  

To contrast the holes in my family to the completeness of others tends to be a slippery slope into a pit of bitterness..., and it takes a great deal of effort, and an emotional toll, each time, to climb out of that pit.  So, I limit my exposure, I keep an arm's distance from, the wholeness and happiness of others.  I do it to protect my broken heart from deeper despair and disillusionment.  I believe it's a normal and acceptable way to cope in the face of traumatic, unthinkable loss.   

Since Zachary's death, there is a fresh, and often confusing, source of externally-induced pain for me.      

Now that the hard-earned, re-calibrated life we created in the years after B.W. died has been shattered -- too -- it is even difficult, sometimes, to look the lives and stories of the once-bereaved in the eye.  It is like looking at my former self in the mirror.   

The once-bereaved people I know are my dearest friends and the most compassionate, wonderful people that exist in this world.  Some are people I've connected with via my blog (and theirs) and the support groups I attend.  Some are women I worked with over the course of five years to plan and prepare our town's annual walk to remember.  They are friendships and authentic connections I've made around the globe, and I am eternally grateful to know each of them.  They are courageous, beautifully broken people, living and coping with the awful reality of having lost a child. 

But sometimes I lose the strength to bear witness to their stories.  You see, I remember the years after B.W. died, when my loss was singular.  I remember the emotional toll of those early years of grief, and the persistence and courage it took to learn to live with such unfulfilled love for my child.  I remember surrounding myself with people who could relate, and gradually, begrudgingly, coming to accept B.W.'s death.  I remember how bittersweet it was to welcome C.T. into our life.  I remember the new and tentative hope, the zest for life, that he gradually redefined in my heart.  And while I grew to understand I would never be healed of my grief for B.W. in this lifetime, nor would I ever feel safe from tragedy, I remember coming to know real joy again and believing that life could truly be good again.  I remember the explosion of joy and gratitude I felt upon welcoming Zachary into our incomplete, but happy, family.  In those days, life was truly as good as it gets for a once-bereaved family.

I watch that scenario of my former life (that ended on January 20, 2014) play out over and over again as I witness the lives of the once-bereaved people in my life, and as I read and absorb many of the virtual stories of other bereaved people I've come to know and respect.  Some of them almost perfectly personify that as good as it gets life that was briefly my own. Somehow, the new life they have created, are creating, remains in tact, while my whole world has been shattered, again, with Zachary's death.    

Every bereaved parent deserves her resurgence, her renewed hope, her hard-earned, bittersweet happiness..., and all of her subsequent children.  But, after Zachary's death, it is no longer my story.  That life, for me, is gone.        

*****

I know exactly four people in the world, personally, who have lost two children in separate instances.  One reached out to me (virtually) in the early months after Zachary died, initially via a loss support site, to share her own story of the loss of her two children.  I have read her emails thousands of times, just to remind myself that someone is surviving a similar existence.  Another is a woman from one of my support groups who lost two adult children.  When we talk, I recognize her grief fatigue, her distrust and cynicism about the future.  The twice-bereaved mother I've known the longest is a woman I met while attending a support group, after B.W. died.  She and her husband were with us at Zachary's bedside after we learned of his brain hemorrhage and the recommendation to remove his life support. While I couldn't believe death was coming for another of my children,... of course, I am sure she could.

More recently, I've connected with a woman whose story very closely mirrors my own.  She lost her firstborn, a son, seven years ago, and a daughter, her third child, just over six months ago. Her surviving daughter, now five years old, is in kindergarten, the same age C.T. was when Zachary died.  Like C.T., her surviving daughter is now flanked by dead siblings.  Only dead siblings.  Like our family, there will be no more children.   

She lives in another country and so, we've figured out how to make good use of phone calls and texts.  We share in the mockery of living in this tiny microcosm, where lightning has struck twice, taking two of our beloved children.  Together, we mourn the fact that our reproductive journeys both started and ended with tragedy and death.  How's your eldest?  Dead.  How's your youngest?  Dead.  We cope with our loneliness and longing, and the loneliness and longing of our living children who thought (hoped) their younger sibling would be with them for life.  We share in the experience of the mostly well-intentioned, but often hurtful, support from people who have a hard time wrapping their minds around what the accumulated loss of two children can do to a person.  We grieve the loss of our own hope for the future while we try to maintain some scraps of optimism for the sake of our living children, who have already suffered so much at such a young age.      

A couple of weeks ago, she marked the seven year anniversary of her son's death, and on the very same day, there happened to be a memorial service scheduled at her church where her daughter's name was be read aloud, as part of remembering recent deaths in the congregation.  When she told me, I could have cried with her all day long.  Two memorials, for her two dead children, on the very same day.  Like me, a lifetime ago, she'd planned to have her youngest daughter participate this year, and every year going forward, in remembering her brother's anniversary.  And instead, her daughter is dead too.  

*****

Sometime during the first few weeks after Zachary died, I remember someone saying to me, maybe a few people separately saying to me:

Well, of course, you'd never wish it on anyone. 

Or

You'd never want someone else to know this pain. 

There was a heavy fog in those early months, but I remember my guttural, pained response very clearly.  I remember choking out the vile words... 

I would wish this on ANYONE BUT ME.  ANYONE BUT ZACHARY. 

I am not proud of it.  It sounds ugly, even evil, and of course we don't have a choice in whom tragedy (or twice the tragedy) strikes, but my gut response is still true, twenty-two months later.   

In the years after B.W. died, I would have said yes, this pain is so horrendously awful, I'd never want anyone else to experience it in my place.  In my grief, I became that heart-cracked-open, more compassionate, sacrificial person, who mostly rose to the occasion of her awful tragedy. 

But then the universe laughed in the face of my once-bereaved, recreated life.  Twenty-two months ago, my burden became double the loss, when Zachary died in my arms.  I would have wished his suffering and death on anyone other than my own family, if it meant he would be here with me today.      

I miss the person I was one lifetime ago, the one who wouldn't wish this on anyone. 

 

Tuesday, October 13, 2015

Exposed

B and I attended a parent-teacher conference this morning, to review how C.T. is doing in school.  She talked to us about the typical stuff - his academic performance, his test scores, his behavior.  All good.  Then she showed us some of the writing he has done in class, including this one...


My special object is a bear.  My family calls him Bearson or Zachy bear.  Before my brother Zachary died he gave it to me.  Before he died he was 2 weeks old.  I have had Bearson for almost 20 months.  I sleep with bearson almost every night.  In the morning sometimes I bring (him) downstairs and put him next to me at breakfast. 

I am thankful C.T. felt safe enough to bring Bearson to school and to write a few sentences about (at least) the surface significance of this particular special object.  He looks proud in the photo.  I envision him having composed his words without shame, with the honesty and confidence we've tried to nurture in him since his beloved Zachary died. 

Then, with a look of concern on her face, C.T.'s teacher showed us a craft project they worked on, something that will decorate their second grade "pod" outside the classrooms, for the fall season.  Each student was given a construction paper pumpkin which folded at the top to reveal another pumpkin underneath.  The kids were instructed to write a few simple clues on the front of the pumpkin so that other students could guess whose pumpkin it was, before lifting the cover, to see how well they know their classmates.  His teacher gently asked us if it was okay for her to put C.T.'s pumpkin up with the rest of the class.

I don't remember what the other two or three clues were, written on the front of C.T.'s pumpkin, because all I saw were the words:

I have two dead brothers. 

All B and I could do was shake our heads in sorrowful abandon.  It is true.  It is terribly unfair and sad and one of the primary things that defines him (and us as a family).  It will continue to define him as he ages without his brothers, particularly without Zachary, by his side.  And it is certainly a unique characteristic, a distinguishing attribute between C.T. and his classmates.  My boy, he is so smart and thoughtful and honest. 

It was not an elegant or socially acceptable way to speak his truth.  But it is also salt in our deep wounds that C.T.'s reality is not acceptable, that it is perceived as needing some kind of sugarcoating to be palatable, to be out amongst the other, simpler, carefree pumpkin clues.  

We've talked to him about using the word deceased rather than dead, which he does a lot in public, verbally with adults, only because society is uncomfortable with the latter, particularly when you're talking about the death of a child.  That kind of thing was reinforced, as an unfortunate necessity, by the grief camp he attended during the last two summers.  I'm guessing he didn't immediately know how to spell deceased, and because we talk openly about his brothers at home, he decided to lay it out there like he did.  He is seven.  I hate that there is there is this tendency to think we need to coach him to smooth over his endlessly difficult reality for the transitory comfort of others. 

Our instinct was to tell C.T.'s teacher to let it be, to put his pumpkin clues up with the rest.  
What is the alternative?  Tell C.T. he must re-think his clues because it makes the teachers and students in his pod uncomfortable?  Make him re-write his clues, changing that single word - dead to deceased - just so that it's at the threshold of acceptable?  Tell him that he should come up with other distinguishing characteristics, delete the difficult one because it is just too sad for people to read?  Lie to him and say that the intent was to stick with simple, less meaningful, clues...  My hair is red or I like soccer or My dog's name is _____

Dumb it down, C.T.  No one wants to know about the reality of your family. 

 
 
I would love for this not to be an issue.  I would love to have had C.T. sail through his childhood, holding hands with his brothers, spewing only rainbows and butterflies into the halls of his grammar school.  I would have preferred he learned about unfairness after being chosen last during kickball or through a lack of recognition after a job well done.  I wish his first experience with suffering had been much less personal and tangible and permanent, that he was able to keep a safe distance from real pain during his childhood.  I would much rather he learned about the reality of death through the loss of a grandparent, followed by the loss of his parents someday - gentler, more orderly rites of passage.  

Honestly, I am glad C.T. is building his confidence in talking openly about his love and his grief and his brothers.  Last year, during first grade, he would come home and tell me he cried about Zachary, all alone, in the bathroom.  He would mostly write about Zachary at home where he felt it was safe to unleash some of his painful emotions.  So, truly, I am proud and pleased about how he's doing.  It's just that this (more public) integration of Zachary's death and the fact that his siblings are both dead leaves all of us exposed and vulnerable for judgment and at least some self doubt.  


Wednesday, October 7, 2015

Suffering

(B's father died yesterday before I could finish this post.  His is no longer suffering and lived a full and vibrant life for most of his 67 years.  It doesn't seem right to elaborate or edit or change the tense, in the context of what I initially wrote, and so, my words remain unfinished.)

*****

Fentanyl, one of the many drugs pumped into our son's system during the last six days of his life, is absorbed through a patch on my father-in-law's chest.  The drug's name is printed on the metallic surface of the patch in a uniform and repeated pattern.  The name, the number of milligrams, over and over again.  A narcotic to sedate, mass produced, in sticker form.  It looks like an iron-flattened candy wrapper.  It is supposedly keeping his pain at bay; the agonized and tormented look on his face says otherwise. 

I flash back to Zachary's hospital room in the middle of the night between Wednesday, January 15 and Thursday, January 16 of 2014.  There is such mass chaos, there are so many unexpected interventions, that the IV tubing running various drugs into the body of my son is twisted and tangled.  Between emergencies, one of his two nurses says they must hand label the lines so that there is no confusion when changing the bags.  I cannot stop weeping and trembling.  I am still trying to understand how any of this is happening at all, how my previously healthy son is now being eaten alive by lethal bacteria.  I see her handwriting, the word Fentanyl, slightly slanted to the right with a capital F, all other letters lowercase, wrapped around the clear tubing.  In desperation, I cling to her neat handwriting, her desire to organize, to make sure there are no more mistakes or accidents in the care of my son.  I tell myself to believe, I pray, that her diligence will help my suffering boy. 

*****    

B's dad is dying and everything about it intersects painfully with the trauma of losing Zachary.  I watch him struggle to live through his last weeks and it looks so much like Zachary's suffering.  His moaning and restlessness, the distant, suffering expression on his face.  The inability to understand what he needs, to know how and where he's experiencing pain.  The helplessness to do much of anything to relieve it. The shifting position to prevent sores and to try to keep him comfortable.  The rattled, mucous-ridden breathing.  The spiked hair, fresh from a sponge bath, almost identical to Zachary's but for the silver.  Evidence of a much longer life lived.   

Familiar end-of-life phrasing: mouth care, the power of touch, mottling. The need to hold his hand and tell him, assure him, it's okay to leave us.  How utterly horrifying it is that we actually said those words to our two week old baby boy. 



Tuesday, September 29, 2015

Who, how, what, will make this right?

I want Zachary. 

I want to feel his grip tighten around my neck when the hay ride lurches forward, unexpected.  I want to dress him in his first puffer jacket, see him laughing and kicking his feet through falling leaves.  I want to watch him twist and pull an apple from a tree, taste the sweet crisp fruit, right there in the same orchard where his older brother did.  I want to interrupt his naptime, gently tell him we need to walk down the street to retrieve C.T. from school.  I want to see his tired eyes, his crankiness, melt away with the excitement of seeing his brother.  I want to wipe his runny nose, mend his cuts and scrapes.  I want to take him to pick out balloons to release, presents to donate, a cake, in memory of B.W.  I want to bring him with me to care for, and say goodbye to, his dying grandfather. 

Where are the people who prayed?  Where are the people who assured me he was going to be fine?  Where are the people who told me the story of their much-sicker child who survived?  Where are they, damnit?

What do they have to say now, 20 months later? 

I want this Zachary-shaped hole filled.  Unfasten the shackles from my wrists and ankles so that I can go and find my boy.  Release me from this agony.


Wednesday, September 2, 2015

Not less

In one month (from yesterday), my eldest would be nine years old. 

In the newsletter from one of the support groups I attend, his upcoming death anniversary / birthday was acknowledged, and in the age column, was assigned a [      ].  As in blank.  No attained age. 

It hurts.  It hurts.  It still hurts. 

I loved him, carried and nurtured him, readied everything in our life and our future to accommodate him.  Labored and birthed him, stared in awe, and in utter devastation, at the beauty of him.  My gorgeous, one-of-a-kind son. 

*****

People who birth living babies are allowed to say things like...

We are so in love, over the moon, really. 

He is everything to us.

We cannot imagine life without him. 

We believe them.  After that baby takes his/her first breath, we allow the parents their full measure of unconditional love for their child.  We affirm how valuable the new little life is by showering the family with gifts and congratulations.  We cry tears of joy with the new parents.  

But, we, mothers and fathers of silently born sons and daughters, when we try to give voice to our unconditional love and our devastating grief, are told...

Sometimes "these things happen".

It is sad, but you can always have another.

How can you love, and grieve for, someone you barely knew?

Love for our child - diminished, denied, squashed.  As if our child was just an idea, just a twinkle in our eye, not a real and loved family member.   

*****

Careless words have been uttered to me, time after time, over the last almost nine years since B.W. died, more often in the time since Zachary died.  Oftentimes, someone thinks they understand, thinks they can interpret my feelings, much more than they actually do.  Some people decide they must tell me their opinion.  Sometimes the words seek to file away my dead children into some kind of ranked order and my grief and pain into neat and distinct categories of loss. 

But, this..., Zachary's death... was different than B.W.'s.

Oh.  They expected Zachary to survive?  I figured there was a chance, some hope,...  Well, gosh, then it is even more devastating....

How so?  How so?  How dare they make presumptions about my love, my grief, the worth of my children? 

Losing two children is absolutely worse than losing one.  Truly, it is twice as horrific.  Even more so, for reasons which are unfathomable unless one is living it.  But, I cannot separate Zachary's death from B.W.'s.  Zachary died after I'd learned to live, reluctantly, in B.W.'s absence and with my perpetual grief for one dead child. 

Would I rather go back to the scenario where B.W. was dead and Zachary was here with us?  Absolutely, yes.  That would mean I'd have two of my three children here with me, the way it was hoped and expected to be on earth's predefined time-space continuum, the way it actually was when Zachary was with us for those two precious weeks. It is not because I love Zachary more, or because he breathed for two weeks, or because I knew him better or because he was expected to survive.  It is not because B.W.'s death impacted me less.   

I still love and miss B.W.  I am still his mother and he is no less my son. 

Thursday, August 20, 2015

Bike ride part 2

(Continued from previous post...)

Was I relieved and grateful to have C.T. back in my arms, safe and sound?  Of course.  Did we brush off our knees, wipe our tears, skip on back to our messy, normal life and say to ourselves all is well that ends well?  No.  Truly, all is not well, nor will it ever be.   

Going on with life, trying to do "fun" things, normal things, in the aftermath of Zachary's death, is difficult.  Every day I wake up with an oppressive sorrow and a despondence, a numbness, to this new life of mine.  I see his precious face.  I see the nurse's hand  cluelessly silencing the alarm on his heart rate monitor.  I hear him moaning in pain, suffering and fighting the infection.  I see his eyes, crisp and bright, and then frozen, almost lifeless.  Nothing we have planned for our day makes sense or has any significance when held up against the torment I face upon waking.  

It never goes away.  It still takes everything I've got to will myself out of bed, to face the day and all it brings.  To submerge the sorrow, don a smile and an attitude of excitement about a bike ride, or some other adventure with C.T., is still a significant undertaking for me.  

After working up the enthusiasm to do the bike ride, the scene that ultimately unfolded on the trail felt an awful lot like being mocked and ridiculed.  In the end, my manufactured fun-mom persona stripped away, the raw me was exposed.  Humiliated, traumatized, trembling with fear, perpetually grief-stricken mother, Gretchen.

What were you thinking?  Out riding bikes, pretending to be living,... pretending to be enjoying life?  Ha!  You fool.  Did you really think you could keep them safe in your fragile state?  Just like you kept B.W. and Zachary safe?  Don't you realize all of your plans, all your devices of control, are a mirage?  C.T. might have returned to you this time.  This time you were lucky.  But you really should have known better.  Death Lurks Everywhere. 

I couldn't have felt more demoralized, as if someone had taken my sweaty, tear-streaked face and smashed it in the gravel of the trail.     

*****

As I've pondered it over the last couple of weeks, I've come to realize that a good chunk of my exasperated tears on the bike trail were in recognition of the loss of prayer in my life.  Since Zachary's illness and death, I do not pray.  Not for myself or my family.  Not for people affected by natural disasters, starvation, cruel dictatorships.  Not for families displaced by war or children in precariously dangerous situations.  Not for anyone.    

It's not that I'm heartless or unmoved by the sad situations which unfold daily across the globe, or even in my own extended family.  No doubt, they exist.  In some cases, they are tragic.  I want healing and remedy and justice in this lifetime as much as anyone else does.  It's just that after watching my healthy, innocent son wither away and die, amidst mountains of authentic prayers, I no longer believe that my intentional, outcome-seeking prayers have any impact for me or others.  I no longer believe that God intends to protect, heal and bless us in this lifetime, as if we are all one-of-a-kind, precious snowflakes, doted upon daily by our Maker.  I simply cannot believe it. 

When your prayers of greatest worth and circumstance, prayers for the very lives of your children, go unanswered, you can't help but question the very fundamentals of prayer.  Even very basic would-be prayers of gratitude, for B and C.T., for food, shelter, comforts and conveniences I don't deserve any more than anyone else, don't actually form in my head or on my lips anymore. 

After what I've been through, I simply cannot bear to talk to God. 

My gut told me I could not, should not, call upon God when C.T. was lost.  Why would He be concerned with a boy lost on a trail when He allows so many terrible things to happen daily?  When He allowed B.W.'s death, Zachary's tremendous suffering and death?  I also didn't feel I owed Him praise when C.T. was found.  I felt grateful, even unworthy in my gratitude, but I had nowhere to place that thanks. 

Realizing it was truly beyond my belief to pray for C.T. that day left me feeling deflated and alone, especially since prayer was something I used to cling to.  I now have an aching resignation that this relationship with God, this ability to actually influence our modern everyday lives and the lives of others by communing with Him in prayer, is actually something sold to us, without much biblical truth, by the church.  Shit happens.  Really awful, hideously wrong, horrific, tragic shit.  It's distributed unevenly.  It's not fair and most of it will not be remedied or redeemed in this lifetime.  And God, for reasons unknown to us, allows it all, regardless of our prayers. 

I suppose it is still a hard pill for me to swallow. 



Sunday, August 9, 2015

Bike ride part 1

For three months now, I've been dealing with a bad case of plantar fasciitis.  One of many daily annoyances to cope with, on top of the ever-present grief.

It has been pretty bad, to the point that I have trouble getting around and executing basic daily tasks.  The steps I take each day must now be carefully planned and monitored.  If I will be on my feet to make dinner, I cannot also do laundry or run errands.  If C.T. plays outside with a friend a few houses away, I call by walkie talkie or by texting his friend's mother instead of "using up" my steps by checking on him every so often.  

The one activity I'm still able to do with C.T., without pain because it's not weight bearing, is ride my bike.  And, at seven years old, even without gears on his bike, C.T.'s little legs are now able to conquer a 10-12 mile trail ride easily.  He loves going fast and being out in nature, pedaling hard to summit a slope, calling out on your left to alert trail walkers we are passing by.  Despite not having Zachary in a kiddie seat attached to my bike, which hurts every single time, it's been a decent activity for us this summer.  We are both getting (some) exercise and fresh air.  I am not in physical pain.  The stroller mommies, with their talk of sippy cups and naptime, can be largely ignored as we zip by them at high speed.   

One day last week, we invited C.T.'s friend E to come along on one of our morning bike excursions.  We planned to ride a trail C.T. and I knew well, but it was the first time I was taking someone else's child with us.  I wanted to be certain we were taking reasonable precautions to avoid confusion, a fall or accident.  The plan was that C.T. would lead, followed by E and finally me, so that I could have my eyes on them at all times.  At all significant crossings, we would carefully stop our bikes and walk them across.  There was to be no sudden stopping (unless absolutely necessary) to avoid collisions from behind. 

We talked about the plan at length and then we were off, C.T. proudly leading the way.

Things were going well.  C.T. seemed happy to have a friend with us and E was having no problems keeping up.  We went further on the trail than I had expected, further than C.T. and I had pedaled on our previous trips.  At our second water stop, probably six to seven (maybe more) miles from our starting point, I suggested we turn around and stop at the park on the way home.  None of us were tired yet, but I reminded them we had to pedal back the same distance we'd come, and that the temperature would be creeping up.  C.T. and E, neither prone to taking risks, agreed, and we began our bike ride home. 

About a mile into the final leg of our trip, just before a winding, forest-dense part of the trail, E suddenly could not pedal his bike.  He came to a stop as carefully as he could.  I hopped off of my bike and yelled Wait up, C.T., as I set my kickstand down.  My hands grasped E's handlebars and I sat down on his seat, tried to pedal.  Sure enough, they were completely jammed. 

I looked up and didn't see C.T.  I thought to myself, He's probably just turning around up ahead, standing up on his pedals like he does.  He'll be here in a few seconds.  My focus back to E's bike, I knelt down to inspect his bike chains, assured him we'd figure it out. 

Ten or twenty seconds later, still no sign of C.T. 

I dropped E's bike and began running ahead on the trail, up around the first winding part, assuming I'd see C.T. goofing around or examining a squashed bug just 100 or so unseen yards ahead of us.  E became anxious that I had left him but also sensed something was seriously wrong.  I yelled over my shoulder, reminding him I'd be back in just a few seconds.  I yelled C.T.'s name, then screamed his name several times.  No answer.  C.T. was gone. 

There was a moment when I could no longer see E behind me, and with no clue where C.T. was ahead of me, the reality of the situation began to sink in, sending waves of panic through my body.     

I ran back to E and quickly explained that we needed to focus on finding C.T.  We'd find and fix his bike later.  Abandoning E's bike trailside, I dialed his mother while mounting my own bike and explained our suddenly scary predicament in a few seconds.  She said she'd come and see how she could help.  Not really knowing if he could manage, but with no other choice, I told E he would have to run alongside my bike as we looked for C.T.

We took off, me darting ahead on my bike, but then slowed by the knowledge that E was on foot.  I lunged forward from my bike, screaming and wailing C.T.'s name over and over again, as I pedaled frantically and E tried to keep up.   

C.T.
Where are you?
C.T.
Please come back. 

I imagined C.T. struck by a car, his body laying in the street, at the first intersection he'd have to cross alone.  I imagined someone grabbing him, stealing him, dragging him down to the river, with no parent to protect him.  I thought about how scared he must feel, not knowing where I was.  I started to imagine telling B I had lost C.T., our only surviving child. 

About ten excruciating minutes from the time I first realized C.T. was missing, we found him.  He was pedaling back towards us, about a mile away from where E's bike broke down.  I dropped my bike and we threw our arms around each other, weeping and trembling with fear turned relief.  C.T. was severely shaken and angry with himself for getting lost, for upsetting and scaring his already-broken mother.  My knees in the dirt, head in my hands, I could not stop wailing.       

C.T. hadn't heard me call to him when E broke down.  He'd been distracted, riding, leading the way, when he finally realized we weren't behind him.  Confusion set in and he wondered if maybe we passed him and he hadn't noticed.  He kept pedaling forward, too frozen by fear to turn around.  He broke down into sobs when he explained:    

I had to stop someone and tell them I lost my mom.  I was so scared.  She told me I should turn around and see if I could find you.

My C.T.  He is still so little.  He was with me, in my care.  And then he was gone in an instant.  Right under my nose, he was gone.     

(To be continued)

    

Friday, July 3, 2015

Your lovey

When your brother C.T. was eighteen months old, he became fascinated with construction equipment.  We would come across a construction site, big or small, and if time permitted, he would stand and watch for hours.  Yes, somehow his attention span extended to hours in the case of diggers.  When we learned about construction happening in or around our community, we made time to visit and observe.  Your father (also interested in construction since childhood) educated both of us, pointing and talking over the noise, about the pieces of equipment, their parts, functions and applications.  If we found a "digger" book, C.T. had to read it.  We must have checked out every construction-related book that existed in our local library during those first couple of years after we realized how enthralled C.T. had become.   
 
We have many photos of your brother from the time he was eighteen months old, deep in thought and completely mesmerized by a piece of equipment or a construction job.  Your father and I would well with tears as we witnessed the wonder in his eyes, the serious yet contented contemplation on his face, as he began to ask and absorb and actually became a little expert in construction.  We felt so fortunate to be basking in C.T.'s development after having lost B.W.     
 
 
Around the same time, C.T. started carrying a specific yellow shovel everywhere we went.  It became his "yellow digger" and to him, it was just as vital we had that piece of plastic as it was that I had my wallet when we left the house.  Most kids choose a soft toy or blanket to carry as their lovey, but not him.  Your brother wanted to be ready to work, to dig, to shovel - just like his beloved construction equipment.  He carried it around for at least a year, maybe two.
 



















I recently watched a small boy about your age, walking on the sidewalk, holding his mother's hand and carrying a well-worn stuffed puppy dog by the tail.  It must have been his lovey. 

I wanted to drop to my knees, sobbing, and pound my fists on the concrete. 

You would have been eighteen months old on July 7, my love.  It hurts so much not to know what your lovey was to be, what interests might have been sparked in your one-of-a-kind brain, at this age.  I had accepted I would miss all of this with your brother B.W., but it is too much, Zachary - to accept I will miss all of this with you too.   

I love you.  I still cannot believe we are apart. 



Wednesday, July 1, 2015

Verdict

Do not exhale or
relax your
shoulders.
Do not be fooled by the
calm, his obedient vitals,
the mood of
recovery.
Don't even think about sleep.
Stop believing he will
come home,
grow up,
no matter how likely
it was.
Dismantle the pile of prayers,
mop up the slobbering
gratitude
from His unwilling feet. 
The eighty-five year old
with cancer,
the triplets born earlier and
much, much sicker,
the drug addict mother:
they will get their miracle.
Not him. 


Sunday, June 21, 2015

Frustrated for him

Happy Father's Day, they say.  It must be so, for many fathers. 

It is the second Father's Day since Zachary died.  The ninth since B.W. died.   

As disorderly as it is, from the day he became a father, my husband has also been a bereaved father.  Today, seventeen months and one day since Zachary died, he is a twice-bereaved father,... and still adapting to the cruelty of it. 

There were many, many supporters last year on Father's Day, but only a few people reached out to B today to acknowledge the unbearable.  Only a couple of people uttered (or wrote) comforting words today.  This must be an extra difficult day for you.  I'm so sorry it isn't a joy-filled day with two of your (three) boys with you.  As his wife, I am so very thankful for the gentle compassion and persistency of the few.  Those five minutes to buy a card, to put a hand on his shoulder, even send a text, are so precious. 

It is difficult for me to understand why people who care and want to support us neglect to do so, for B, on a day like today.  Are they just too wrapped up with their own happy day, traditional activities and busyness?  Is there just nothing they can think to say?  Is it simply too sad to deal with or too frustrating that nothing makes this all better?  Is it perceived B would be missing Zachary only on the first Father's Day without him?  Or my worst fear: is Zachary already forgotten, like B.W. was years ago?  

I try not to let the dwindling support bother me, as I notice it more and more, with each passing month.  I try to focus on the people who do remember Zachary (and B.W.), who are there with us and for us in wonderfully different ways.  I tell myself that with two dead children there are almost too many significant dates, too many pain points in our life, to remember and acknowledge them all.  I remind myself that Zachary's death on top of B.W.'s death is our burden, our grief, to carry.  I try to keep in mind that no one loves Zachary like I do, like B and C.T. do.  I try to accept that other peoples' lives were not shattered when Zachary suddenly and senselessly became ill and died, that other people still somehow believe in happiness, hope, optimism and life's goodness, still relish in their own "happy" Father's Day.   

I just wish more of the people in our life had the attention span for B's ongoing, grief-filled reality.  I wish more (or at least a consistent ratio of) people would recognize his loss and his pain, particularly on a day like Father's Day.  It is so infrequent, otherwise, that Zachary or B's compounded grief is acknowledged at all.   

*****

B said something a few weeks ago, during a tearful dinner, and as I have mulled it over, I think it is heartbreakingly true.

Sadly, for many of our family and friends, Zachary was a historical event. 

An event from January 2014.  History.  Not a painful, gaping, human hole in daily life.  Not our beloved son who changed us forever and then died, who we will never again see or kiss or feed or bathe or watch grow into the man he would have been.  Not the almost eighteen month-old toddler who is supposed to be making first fat crayon marks on a Father's Day card for his daddy today.   


Sunday, June 14, 2015

Garden

When we moved into this house in the summer of 2012, we had plans to create a garden in memory of B.W.  We knew we wouldn't get to it right away because of all of the other expenses that come with building and moving, but this was intended to be as close to a "forever home" as we could imagine, a place where we could create a living memorial for our son without worrying (too much) about being forced to leave it behind one day when we moved again.  As a house warming gift, my friend Megan gave us a gift card to a local garden/nursery and wrote on the envelope something like:

A little something to help with B.W.'s memorial garden.  I'm sure it will be beautiful. 

Only a year and a half later, Zachary died.  The implication, as mind-blowing and infuriating as it is..., B.W.'s memorial garden would now also be a memorial to Zachary.  A garden for not one, but two, dead sons. 

In autumn of last year, we worked with a landscape person to design the garden.  For a very small budget, she thought about sun vs. shade, soil, drainage, color and blooming seasons.  I honestly don't think our memorial concept or our dead children were in the forefront of her design, but she created a beautiful and well thought out outline for the garden, which we can personalize.  She selected two trees for the space, not even realizing the significance of their blooming timeframes.  One of the trees blooms in October (B.W.'s birthday) and the other in late winter (the closest we will get in Chicago to something blooming around Zachary's birthday). 

We have spent virtually all of our free time over the last few weeks sourcing and implementing (ourselves) a good chunk of the garden plan.  We have edged, shoveled, planted and mulched around something like 45-50 trees, shrubs and plants.  It has been a physical labor of love for B and me, with plenty of anger and bitterness embedded with it. 

You see, this is not how it was supposed to go.  The garden was supposed to be yet another way to assimilate B.W.'s death, our grief, the place in our hearts that he holds, into the fabric of our lives. I had imagined a living Zachary involved in this, involved in everything we do in memory of B.W.  We were not supposed to add his name to the memorial garden.  The garden is not supposed to be for him too!  It is still so hard to accept, still so unbelievable that it's real.  Of course, I wonder if and when we'll have need to memorialize C.T. too.   


We installed a chicken wire fence today to see if the Japanese forest grass will grow back in front of the bird bath.  Rabbits ate them overnight, leaving trails of pellet droppings everywhere.  I know we'll need a longer term solution but we were hoping to at least allow those plants to grow again, unbothered, if possible.  After the bird bath seemed to sit unused for two weeks, which was really depressing for all three of us, B and I finally saw a bird land and play there yesterday. 

We are still working on ways to personalize the garden.  Ideas and items that had B.W.'s name incorporated now need to be replicated for Zachary.  C.T. has been collecting rocks "for Zachary" for over a year now, and we have to figure out how and where those fit.  A bereaved friend from Colorado stayed with us a couple of nights last weekend, as she and her daughter made their way to the east coast.  She gave us a few beautiful items, in memory of B.W. and Zachary, to incorporate into the garden.  




I have spent hours online looking for other customizable memorial garden things.  There are very few that don't make me want to vomit.  My searches turn up thousands of cutesy options for acknowledging living children, for pet memorials, for the perpetually overused butterflies and dragon flies.  Then there are the ones that attempt to sanitize and pretty-up the situation... too beautiful for earth or God needed another angel / flower for his garden.  Most of the more sobering items, intended as human memorials, look like tombstones and include wording about a long life lived and how the memories will live in our hearts.  Isn't there anything that leaves a painfully real impression, that allows for the injustice of having lost two children?

I don't know that I will ever be satisfied with anything I find when it means allowing for some kind of beauty to come out of Zachary's death.  I could find the sweet amidst the bitter, a few years ago, for a garden in memory of B.W.  I find I am not as capable or willing now, after having been struck again by the death of another son, who died against all odds.  It is still too wrong, still too uniquely horrifying, for his broken mother.   

Friday, May 15, 2015

Imagine

Since Zachary died, people often tell me -- 

I can't even imagine.

It's validating to hear my very real nightmare acknowledged.  I appreciate the sentiment because it is absolutely the truth.  One simply cannot know what it is to have experienced the tragic and traumatic losses I have endured, cannot understand their impact on every facet of life, without having lived them.  And, declaring inability to imagine is much preferred to those who have the audacity to claim they can understand my loss and my grief, when they actually have no clue.  Believe me, that has happened too. 

I believe the basic intent behind the statement is most often to comfort and support me..., and intent is huge in the context of profound loss and, so often, vacuous words.  Yet, I often hear something else in those words, emanating from the depths of the subconscious where ego and fear and self-preservation exist.  Sometimes I recognize, in a flash, that the statement is not about me and my dead children at all, but rather --

I am so glad it wasn't me, wasn't two of my children.  I don't even want to think about it.   

I suppose it's human nature.  We never really entertain the idea that our own children might die before us.  We think those kinds of things happen to other people, not to us.  We stick our fingers in our ears, close our eyes and sing "la, la, la, la, la" to drown out the frightening possibility.  We want to hold on to the belief that our family is safe.  We want to believe our planning, our acts of prevention and hyper-protectionism will do the trick.  Many of us pray for the health and safety of our children - prayers, we have rationalized, God readily hears and answers.     

We turn off or ignore the television news because there are too many innocent children being gunned down, in neighborhoods usually far from our own.  We prefer sending in our money to a non-profit or aid organization rather than coming face to face with a child's suffering or death.  We change the radiothon station when the bereaved parents come on to talk about their child who fought and "lost" his battle with cancer.  The thought of a cherished son, dying in a hospital bed, in the context of modern treatments and a conscientious loving family, is intolerable for us.  We don't want to acknowledge it could have been us.  We retreat back to our own orderly lives, where things are humming along sufficiently well, where plans generally materialize, where children are alive and well. 
    
In his memoir The Book of My Lives, which is brilliant by the way, author Aleksandar Hemon remembers interacting with people when his nine month-old daughter, Isabel, was suffering with a rare brain tumor, from which she ultimately died:

When people who didn't know about Isabel's illness asked me what was new, and I'd tell them, I'd witness their rapidly receding to the distant horizon of their own lives, where entirely different things mattered.  After I told my tax accountant that Isabel was gravely ill, he said: "But you look good, and that's the most important thing!"

So, what if you are unable to ignore or suppress the truth about child death?  What if what cannot be imagined is, in reality, your life?  What if you have a terminally ill, or dead, child?  What if, against all odds, you have two, or three or more, dead children?  What if your family's story of child death is so horrific that no one wants to acknowledge it or to ever be reminded of it? 

You walk around wearing a mask, politely avoiding the topic no one cares to talk about, but which presses on your soul incessantly: your gravely ill or dead child(ren), your grief.  When you interact with people, you stick with topics they are comfortable with.  You keep your miserable story, your ugly emotions, hidden so that no one has to be reminded that children die, that your child(ren) died.  It is exhausting work, an exhausting act to keep up, especially as you adapt to it.  I believe it is one of the most humiliating and isolating things about living the life of a bereaved parent.  Not only does your child(ren)'s memory fade into the oblivion of absence and other peoples' discomfort and fear, the grief you carry becomes conveniently and almost entirely, invisible.  For the sake of preserving the mirage of life's orderliness for people not directly affected by unimaginable tragedy and grief. 

*****   

B left yesterday morning for a four-day work trip.  He will run into people he sees only once a year, usually at this conference.  He decided not to attend last year in light of Zachary's death and so this will be the first time he has seen many of these colleagues since before Zachary was part of our lives.  Spouses are invited (although I decided not to attend, again) and so, for the social aspects of the trip, there will be plenty of cocktail-style chatting about life and family, in addition to work. 

Imagine the conversation starters. 

How are the kids?  Remind me, Brandon, how many children do you and your wife have? 

We didn't see you last year.  What's new?

Where is Gretchen?

As he was packing to leave, B told me he was anxious about the trip, about his ability to float around the light conversations of the weekend, with Zachary's death and his grief as constant companions.  And, knowing the way people tend to react, getting through it without slinking into the depression of disillusionment.  It is precisely the reason I am not attending.  

B is carrying Zachary's photo, his comb and his ear muffs (used to drown out the sound of the oscillating ventilator when he was battling the infection), in his pockets, like he does every day.  No doubt, he will have plenty of opportunities to bring Zachary and our new reality into conversation.  There will be no way around it.  I wonder if someone, just one person, will dare step out of their own orderly reality, for just a few minutes, and imagine a sliver of his. 

Thursday, May 7, 2015

Milestone in a box

I have feared this day for a couple of months now.  Yesterday afternoon, Zachary's trunk was finally delivered to our doorstep.  Just slightly bigger than a box which might have held Zachary's casket, it sits unopened in our foyer.  B and I agreed we would wait until the three of us are together, with some intentional uninterrupted time, to open it. 

I know how this works.  We will inspect the trunk, our fingers will trace the inscription of his name, his dates, his painfully short story, as if this were his headstone.  There will be tears and another cruel jolt of finality, the kind that no parent or (young) brother should ever have to feel, but that we live with,... now, times two.  The next logical step will be to go through Zachary's things and place many of them carefully, one by one, in his trunk.  We will pick a time to do that.  Together we will debate what goes in and where it gets placed, reminding each other it can be opened, contents shifted and snuggled, whenever and as often as we choose.  And then, we will shut the lid.  

We will shut the lid, again, on our senselessly dead boy. 

Instead of a wispy haired, sixteen month-old toddler running around with a sippy cup, instead of the giggling, squirming, pulsing with life, presence and personality of our Zachary, we will have a box.  The stark contrast is never lost on me.  This is not what I planned to do on the day that marks sixteen months from my son's birth. 

*****

It's the neverness that is so painful.  Never again to be here with us - never to sit with us at table, never to travel with us, never to laugh with us, never to cry with us, never to embrace us as he leaves for school, never to see his brothers and sister marry.  All the rest of our lives we must live without him.  Only our death can stop the pain of his death.

A month, a year, five years - with that I could live.  But not this forever. 

I step outdoors into the moist moldly fragrance of an early summer morning and arm in arm with my enjoyment comes the realization that never again will he smell this.

As a cloud vanishes and is gone,
     so he who goes down to the grave does not return,
He will never come to his house again;
     his place will know him no more.
                                   Job 7:9-10

One small misstep and now this endless neverness.

~ Nicolas Wolterstorff from his book Lament for a Son