Tuesday, October 13, 2015


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


(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.