Tuesday, August 26, 2014

Softest hair

A photo of him sits on a magnetic board, above and to the left of my computer screen.  His hair is combed down and to the right, sweeping across his head in the same direction that mine does, naturally.  There are thousands of hairs visible on his perfectly formed head.  Hundreds that make up his eyebrows, which run adorably right into his hairline. 

The texture of Zachary's hair was so soft, so memorable to all of us.  C.T. often tries to recreate it after washing his own hair during bathtime...

Mom!  Feel right here!  Doesn't it sort of feel like Zachary's hair?

B carries Zachary's comb in his pocket every day.  I breathe in and remember my lips and nose pressed against his hair during his days of health.  During his health crisis.  On his last day. 


In that photo in front of my desk, under that beautiful head of hair, inside of his skin and skull, sits his perfectly formed brain.  The promise of full and normal neurological function for my Zachary.  I saw him using that miraculous brain thousands of times through those first nine and a half days of his life, before he was medically paralyzed (because he was fighting his sudden illness, and being intubated, too violently).   

Why, oh why, did it destroy his brain?  His body wanted to recover from the sepsis.  Started to. 

Zachary's brain injury haunts me.  Breaks me again and again.  Chokes my ability to pretend I'm okay, to carry out even the smallest task.  His fully functioning brain - destroyed by an infection. 

Wednesday, August 20, 2014

Futile, meandering, first day lament

He didn't cry or spit-up or soil his diaper at the moment we were ready to leave the house.  He didn't demand my full attention in the midst of C.T.'s special morning.  His eyes didn't go wide to see and hear the school buses, the loads of children tumbling out.  Our hearts didn't soar with pride with photos captured - our two boys together - on the first day of school.  C.T. could not kiss him goodbye.  I could not talk to him about the sights and sounds in the neighborhood as we took our first stroll alone together, this (school) year. 

My phantom child walked to school with us this morning.  (I tried to keep at bay the tendency to see my phantom, almost eight year old, because really, how much can I feasibly lament at once?) 

Oh, how I wish that sorrow wasn't Zachary's mark on today, on C.T.'s first day of school.  But he died and it has literally shattered our world.  Selfishly, today was going to be the first, of many, long days alone with my sweet baby Zachary.  It has been seven months and it is still not okay that he is dead.  I had accepted one dead son, have worked hard on that, for years.  I made something akin to peace with the fact that we would live all our days without B.W.  I would grieve, always, but I would accept it.  But, my heart just won't accept this.  Not this.  Not Zachary too!  How can this be?  He was just right here, in the flesh.  They say that young children have a difficult time understanding the permanency of death.  I have to say that even I, as a full grown, thinking adult, am having trouble with the damned persistency of Zachary's dead-ness.    

With every new thing I do or participate in, without him, the mother in me is still shocked at the rediscovery.  Zachary is still dead.  He is never coming back.  Watching C.T.'s baseball game, purchasing a bike and riding together for the first time, stepping into someone's home or a familiar spot we haven't visited since "before", the first day of school.  Every time, another layer of the reality of Zachary's death, in the here and now, is painfully revealed.  I work myself up to these scenarios.  I often know when they are going to happen and might even anticipate how I might react.  Even so, I cannot seem to dull the pummeling realization, the bitter pain and the feeling that NO! I am not ready for THIS.  Here I am.  Without him, again.    

Buried with my grief, in my inability to accept Zachary's death, there is a nagging compulsion to get out, get away, to pack up and move to a place entirely different than here.  To sneak away and escape this devastation.  There are so many memories here, so much expectation, and sadly, so much life that should-have-been, here.  Maybe if life changed dramatically, if there were all new faces and places,..., well, at least we wouldn't be confronted so pointedly every day with the "old" life and the promise it held for Zachary and us.  Maybe leaving would reflect and give voice to how permanently our life has been affected by his life and death.  Maybe I wouldn't feel like I'm going insane because in a new place, there would be no expectation for me to return to the old Gretchen.         

Ack.  It is all useless.  He is dead.  We are here.  We miss him desperately.  It hurts to live life without him.  Life will never be the same.  There is really no running from it.   


Monday, August 18, 2014

A disappointment, finally voiced

Last week, I finished and hand delivered a letter to the office of the superintendent of our school district.  My letter described, in detail, the radically unhelpful response and support of C.T.'s school, in the months following Zachary's death.  The refusal to acknowledge Zachary's death with a simple notification letter to classroom families.  The robotic, sterile responses of everyone we dealt with, as we asked for the most basic support for C.T., in the loss of his beloved brother.  The "waiting for C.T. to show or tell us" he needed support through some unlikely behavioral issue or a decline in his academics.  The bouncing us around from teacher to social worker to principal, with no regard or empathy for our lack of emotional stamina, for our inability to formulate anything beyond a primal cry for help.  The complete non-validation of C.T.'s loss and his grief.  

When Zachary was born, C.T. was asked to share his good news in front of his classmates. But when he died, it was like C.T.'s brother had been mere mirage.  No one asked.  Beyond his teacher's attendance at the funeral and a couple of classmates who, according to C.T., showed interest in Zachary or who he felt comfortable sharing with, no one at school mentioned Zachary again.  No one asked C.T. how he was doing, how he was feeling.  And because the school refused to notify classroom families about our loss, even those who might have talked with their child about Zachary's death and C.T.'s loss, who might have encouraged their student to show sympathy and support, who might have demonstrated it for their child, were left unaware..., or paralyzed with inaction because of the hushed secrecy surrounding the something (?) that happened to the S family. 

Zachary is here safely.  How wonderful!  Tell us all about him. 
Zachary is dead.  You say you watched him die.  Shhh.  Please keep that to yourself.  

It hurt to be treated this way by his school, a place we assumed would envelope C.T. and us in compassion and support.  With no fight in me at the time, not a lick of energy that I could feasibly devote to it, I gave up on asking the school for anything on behalf of C.T. on March 1, not even two months after Zachary died. 

In my letter to the superintendent, I noted the positive aspects of C.T. returning to school after Zachary's death.  The consistent schedule, the lessons, the familiar faces.  Some normalcy, in what was an otherwise horrifically traumatic time.  Yet, I struggled to balance my disgust and cynicism about the "community building" that is supposedly foundational to the values of the district - which completely failed us when we needed it - with some level of professionalism.  I offered up examples of what would have been helpful and supportive in the aftermath of Zachary's death, and expressed my desire that no other bereaved students/families experience this kind of treatment, ever again, when an immediate family member dies. 

Surprisingly, the superintendent, who we don't know at all, reached out to me by email, not even six hours after I dropped the letter.  His response was compassionate and full of regret about our experience with the school.  Fifteen years ago, his own son died.   


The new school year begins this week, on the 20th, exactly seven months after Zachary's death.  I am going to feign optimism about the school, its leaders, teachers and professionals, for C.T.'s sake.  I will label each and every crayon and marker with his name, because unbelievably, THAT has been deemed important.  I will talk to C.T.'s teacher about Zachary's death just seven months ago, about the fact that C.T. has two deceased siblings.  I will share our story so that when he does his All About Me poster this year, his teacher can minimally be prepared for the questions that may arise when he talks about his family, about his two dead brothers.

And, we will walk to and from school, everyday, without Zachary. 


Monday, August 11, 2014

Trust the rope

I had been warned - I had warned myself - not to reckon on worldly happiness.  We were even promised sufferings.  They were part of the programme.  We were even told, 'Blessed are they that mourn', and I accepted it.  I've got nothing that I hadn't bargained for.  Of course it is different when the thing happens to oneself, not to others, and in reality, not in imagination...

I thought I trusted the rope until it mattered to me whether it would bear me.  Now it matters, and I find it didn't. 

~ C.S. Lewis, from A Grief Observed


I see "faith" and hope and expectation all around me.  Relentlessly, suburban folks, claiming to be of Christian faith, seem to believe they deserve happiness, a stable if not grossly prosperous life and all of their family members kept healthy, strong and successful.  Many personal prayer requests (I have been witness to) seem to be designed around the flourishing of the family, the curing of illness in the immediate circle of family and friends, the banishment of difficult times, just as soon as possible.  Many even seem to believe that their good fortune is ordained, that good begets nothing but good, that every day-to-day coincidence is orchestrated, hand-selected for them, by God. 

Didn't you knock?  Certainly the door would have opened for you.  Didn't you ask with faith?  Why, if you had, it should have been granted.  That is so sad that, despite your prayers, two of your sons died...,  now God, please be certain to continue to keep my family safe and healthy and happy. 

I imagine it's splendid to have this flavor of faith, this perspective on prayer, if life has gone relatively smoothly.  If prayers are mostly perceived to have been "answered".  When, for instance, disease and illness are hurdles that have been overcome, when children are growing and thriving, when family members succumb to death only after a relatively long and full life lived, when real trauma has stayed just far enough away not to impede too much on daily life, or to disprove long-held beliefs.  I wish this Sunday school faith could sustain me now, but it mocks Zachary's suffering and death, and the suffering of so many others outside of the safe enclave of the first world in which we live.  If Zachary had survived his illness, everyone would have said "Praise God. Our prayers were answered."  Instead, all I hear is silence, most would-be faith responses scattering as far away as possible from our horrible, unexpected tragedy. 

Does anyone really understand the senselessness in what happened to my otherwise healthy son?  Can anyone begin to fathom the torture Zachary endured?  Does anyone know how his death and B.W.'s death affects our family, permeating every facet of our life and faith, and permanently?  Can anyone explain how Zachary's suffering and death are part of God's plan?

I know in my heart the answer is no. 


When I inspect my disillusionment with my faith closely, I am deeply hurt and confused.  Am I angry at God for not answering my (most authentic, most important) prayers, for not sparing Zachary's life?  Yes.  Am I angry about the empty promises of pop culture Christianity, the lies my subconscious held onto despite their precariously weak link to excerpts from God's word?  Yes.  How will I ever have the courage to pray boldly for anyone or anything, ever again?  Will I ever feel anything but disgust when I hear someone attest to the power of prayer, but with full knowledge that it failed my Zachary? 

All I can come up with to stop from spiraling into total disbelief, in my broken state, are three promises God made to believers and would-be believers.  As simply put as I can... 

1 - Salvation (after death)
2 - Suffering (in this life, in this fallen world)
3 - The Holy Spirit (God with us, in this life)

If these promises are 80% on point from a biblical perspective, my faith fatigue is, well, misplaced.  God didn't promise me, or anyone else, happiness.  He didn't promise that my family would be whole or that my children would outlive me.  He didn't promise that life would be easy or comfortable or free of tragedy and deep, deep, lasting sorrow.  He didn't promise to answer my prayers like a genie in a bottle.  (I can just see the Christian community nodding along, at least partially.  And, even that confounds and upsets me because most of them have never had to "trust the rope" with their child's life in the way I have.  Most have never had it fail them under such tragic circumstances.)   

My soul is crushed and my hope is emptied.  People ask me what I would have them pray, on our behalf.  The truth is, I have no idea.  I don't know that it matters at all.  Does anyone remember that hundreds, if not thousands of us, were on our knees, imploring our almighty God to return my Zachary to his state of health?  Does anyone remember how that turned out?  He died. Contrary to all expectations, in the presence of so much love and relentless prayer, he died.  My faith, as misconstrued as I'm sure it is, is shaken to its core. 


Monday, August 4, 2014

Camp Kangaroo

C.T. was anxious for the entirety of last week, leading up to the hospice-sponsored grief camp he attended during the past few days.  As Day 1 of camp approached, his tears and grief trickled out, but more persistently than they do during a typical week.  He tried to explain to us how angry he is to have had such little time with Zachary.  How cheated he feels that he was never able to spend time with Zachary when he was healthy and able to interact.  WHY didn't they let me come?  I would not have brought any germs with me.  I could have changed my clothes and scrubbed by arms and hands, just like you did.  He worried that he wouldn't have enough "Zachary stories" to share at camp, that he would be jealous of the sheer time, the volume of memories, represented by the other kids, who he imagined were afforded more time with their deceased sibling or parent.  He explained that he was concerned about crying in front of strangers (thank you, society) and about not being able to stop crying, once he got started.  We spent a couple of days last week just trying to purposefully hash out these deep, painful emotions and concerns, so that he would feel heard and ready for Day 1 of camp.  It was an exhausting week, keeping pace with the overflow of C.T.'s emotions, the escapes he needed in between and my own heartbreak for him and us. 

Drop-off on Day 1 was really difficult for both of us.  He clung to me, tears in his eyes, when it was time for me to go.  I knew he didn't want to admit that he was part of this grief "club", didn't want to get to know these other stranger kids and their sad, sorry stories.  It's a feeling I know all too well.  I felt the exact same anxiety and disgust upon parking the car to go to my first support group meeting when B.W. died.  And, then again, when I joined a another support group after Zachary died.  Is this really me who is participating?  And, again?!  Is this really my life?  I tried to assure C.T. of everything we had talked about throughout the week, kissed him and then left him there in his neon yellow hospice camp shirt, in the care of experts and camp counselors.  I sobbed as soon as I reached the elevator and had trouble driving the 15 or so blocks home. 

I held off as long as I could, but about four hours into the camp day, I sent a text to the head camp coordinator (who said she was open to dialogue with parents or caregivers throughout the day) to ask how C.T. was doing.  She noted that he wore his sunglasses the entire day - even while they were indoors - and that he had some tears, but that all was okay.  I guess the sunglasses were his last ditch attempt to protect himself from feeling like everyone was watching, during the times when he cried.

The camp turned out to be a really beautiful and meaningful experience for C.T.  He even relaxed and took off his sunglasses.  Each day, he became more comfortable and more willing to go back again.  The staff had planned so many different (even fun) grief activities..., and all of the children got to feel "normal", in the company of other bereaved kids, and adults who understand and encourage them to talk about their deceased family member. 

The kids were able to share pictures of their special someone and talk about him/her, in front of their small group.  They had two volunteers dedicated to sitting with each child to design a photo slide show, set to music selected by the camper.  (The volunteer who worked with C.T. was named Zach.  C.T. made sure to tell me that his full name was Zachary and pointed him out to us, at the closing ceremony.)  The kids made screaming boxes - a place to physically send their screams of anger at their loved one's death, a way to visualize it leaving their bodies, if only temporarily.  They talked about their complex grief emotions and some healthy ways to express them.  They talked about wearing a mask sometimes and how that sadly becomes part of life, to some extent, when your sibling or parent has died, and then they made their own grief masks.  There was professional storyteller who delighted them with all kinds of stories, incorporating the reality of loss and grief as an integral part.  With a music therapist, they created a beautiful camp song that they performed at the closing ceremony on Sunday. 

After their second discussion about complex grief emotions, the kids were asked to lay down and be traced on gigantic pieces of butcher paper.  Below is C.T.'s outline and how he chose to represent what he says are his own three primary grief emotions.  He was so proud to take B and me over to the display wall, after the closing ceremony, and tell us how he feels his anger in his chest and feet (black), his sorrow in his head and arms (blue) and his nervous (worried) feelings in his core (orange). 


I was just so proud of C.T. for attending camp and so thankful that I followed through on getting him signed up.  The experience of watching Zachary suffer and die, of having his brother stripped away from his life forever, on top of knowing there is an older brother who has also died, is just so heartbreaking that it's tempting to try and look away from it.  To just look ahead, push forever onward and beyond, hope for no more tragedy to befall this poor child.  B and I absolutely never take this approach, but we have felt it in some ways from society and definitely from C.T.'s school.  From the camp experience, our beliefs were confirmed that there is so much value for C.T., just as it is true for us as his parents, in grieving and remembering and continuing to express love for Zachary and B.W.        

Friday, August 1, 2014

Ugly parts

My sister took C.T. and her girls to a nature preserve yesterday, so I had a few hours to myself.  I decided to go for a jog along the river, something I've been doing sporadically to shock and electrify my sorrow filled body.  I'm assuming there is some benefit to blood moving through these weary shadow limbs,... even as being out in nature, where Zachary will never be, still sickens me.

On my return home, I decided to change my course and pass by a house that we rented for one year (mid-2011 to mid-2012) while we were building the home we live in now.  I guess I wanted to see a place that would remind me of a time when life was still somewhat hopeful, when the grief we lived with was singular, with just one deceased child.  When a living sibling for C.T. was still something that was thinkable.  As I walked by, I imagined the spaces inside.  The kitchen without a dishwasher, the bathtub drain that clogged constantly due to years of abuse, the coffin-like, spider infested shower that B used in that awful smelly basement so that C.T. and I could use the nicer bathroom upstairs.  I remembered how we made the best of it, made it our temporary and comfortable home. 

I have fond and frenzied memories there.  It was so hot during both of those summers that I have probably 200 photos of B and C.T. together in the plastic kiddie pool that stood, almost permanently inflated, in the backyard.  I was still working at the time (in a global role that required crazy hours), designing our home and working with the builder constantly.  Every day was filled with dozens of work and personal appointments and conference calls, from early morning until well after C.T. went to bed.  I remember C.T.'s first day of preschool, the photos we took that morning outside, in the front lawn by the tree.  I remember C.T. and me riding his new plasma car down the tiny hallway together, in our pajamas on Christmas morning.  I remember having a few other bereaved mothers and their living children over for a cinco de mayo playdate. 

As I passed the house, now sporting a basketball hoop belonging (presumably) to the new renter, I see a mother, three blonde children and a baby in a stroller up ahead.  The woman is heavyset and wearing a long black skirt that rocks and swooshes with each step.  The group moves slowly, the size of the group demanding patience and catering to the pace of the youngest walker.  Within seconds, I recognize her from our rental house days.  She lives five or six houses away from our rental.  Red adirondack chairs decorate her front yard, under a gorgeous shade tree.  We have never met, perhaps waved at each other a few times that year, recognizing that we lived in the same vicinity. 

Pangs of jealously and anger grip my insides.  When we lived on that street, three years ago, she was pregnant with her third child.  I was secretly jealous of her then.  That third child now walks with the herd AND there is a new baby.  Another one!  In the time that she has popped out and had the privilege to mother her third and fourth, I have had a miscarriage, and then perfect Zachary, dead at two weeks of age, because of fucking E.coli. 

My thoughts.  How is this possible?  I have long ago abandoned fairness as vernacular for the way this world actually works, but somehow my ugly righteous thoughts still permeate.  I did everything right, as it relates to getting my children here safely.  With Zachary, I ate wild salmon, salads and homemade food, avoided anything remotely harmful, exercised moderately, injected myself daily with Lovenox, as prescribed, even when my stretched midsection had no shot sites available.  I prayed for Zachary's safety and health.  Constantly.  I re-aligned my expectations when my water broke suddenly, when I laid absolutely flat for a week, when Zachary was born and deemed healthy, through his first week of scans when his problems were so minor and surmountable, as I cared for him through portholes in a hospital setting, when he acquired sepsis, when he was near death, when it looked like he would recover and might suffer with (minor or major) lasting implications.   

Two of my three children, dead.

And this woman.  She looks like she ate twinkies and doritos and drank nothing but soda, throughout all of her pregnancies.  She probably has no idea how fortunate she is.  Four kids.  All perfectly spaced out by two years or so.  All seemingly healthy.  God. 

It is true.  I have no idea who this woman is, what she has been through in her life, what battles rage in her head and heart on a daily basis.  She might have even looked at me with pangs of jealousy, had her own ugly thoughts, that perhaps I had what she perceived as freedom.  Skinny bitch... probably has never had to care about anyone but herself.  But, I guarantee whatever fleeting thought she had about me as we passed each other, was quickly dashed away by the needs of those four beautifully blonde children.  

The ache that I feel when I see mothers and their happy lot of children - most of them whole - will never go away.  Ever since B.W. died, that element of being part of society, of our community, even our extended family and friends, has been difficult.  With Zachary's death, that feeling has compounded to the point that it's too painful to be around other families.  With two dead children, being around whole families, honestly even families who have lost one child but have multiple other living children, makes us painfully aware of how obliterated ours is.  I hope that feeling diminishes, over time, to the point where we can at least spend pain free time with our once-bereaved friends.  There aren't many twice bereaved women that I know who can help me understand how to live with this for the rest of my life, how these feelings might become more manageable, over time. 

It is really ugly.  I know.  And, it is just one of the unflattering aspects of my grief.  One that I'm willing to share publicly, here.