Sunday, August 7, 2016


Due to scrutiny by parties I cannot discuss, I won't be writing (publicly) about Zachary and my grief for a while.  I do not know how long it will be until I return.

Love to everyone who has been here to read, relate and comfort me since Zachary died, and gentle hugs to every bereaved parent I know. 

Thursday, July 7, 2016

Two and 1/2

Today you would be two and a half years old, Zachary.  Your half birthday.  Thirty months since that amazing day.   

It's the kind of day the four of us would celebrate together more subtly, quietly amazed at how much you'd grown in half a year.  If you were here. 

A special day for you, halfway to age five.  Not even a blip on anyone else's radar.  Our little secret.  If you were here. 

I miss you, love, your milestones, more than I can articulate.

C.T. and I painted these stones for you today, to add to your garden.  You are our sunshine and our heart.    


Saturday, July 2, 2016

Attempts at life

I feel my chest cave inward, a sad sigh of disillusionment, every time I hear puppy congratulations.  
As of the end of Wednesday, he'd been with us a whole day longer than Zachary's fourteen days of life.  Our time and attention is now invaded by a new creature - a pet - who shares our home. 

I already know our puppy well enough to know he is going to poop seven times a day, give or take one.  When I rescue him from his crate in the morning, he is going to do vertical, twisting spins in my arms as he licks my face and neck.  When he's tired and ready for a nap, he smacks his lips and flutters his eyelids.  His puppy fur is so soft that when he sits, his rear end slips out from under him on our wood floor.  He likes to snap at moths and do somersaults in tall patches of grass and hates the sound of the big, intimidating looking trucks that occasionally drive down our road. 

He looked up at the sky yesterday and was at once awed and terrified when he noticed a low flying airplane for the first time.  He is adorable and trouble-making and chews his toys and my hands and clothes incessantly. 

I think we may have almost as many photos of Thunder now as we do of Zachary.   And that hurts so badly. 

It feels wrong that Thunder lives, spends ordinary days with us in our home, while Zachary does not.  Maybe it sounds strange, but I feel envious (for Zachary) that our puppy gets so much of our time, so much normalcy, that he receives C.T.'s attention, some of the hugs and kisses that should have been Zachary's.  I find myself even pointlessly fantasizing about swapping the pet for the son, and dreaming it were then possible to go on with Zachary as if the last 29 miserable months never happened.

This consolation prize reality is still, still, so hard to accept.  Every new thing since Zachary's death is approached with such tremendous reluctance. 


Unlike the prior two years, and despite glacially-slow improvement in my feet, I made it to just about every one of C.T.'s baseball games this spring and early summer.  I still couldn't bring myself to sit anywhere near the bleachers, where the others parents and siblings were, so I'd set up my chair way out beyond the first or third base line.  I even cheered for C.T.'s team at the appropriate times this year, as if the outcome of the game mattered to me.  It's progress.

A few weeks ago, a mother I remember from C.T.'s kindergarten class showed up to the game with her two younger sons.  I remember her from C.T.'s kindergarten year.  We had worked on the Halloween party together in the fall of 2013 when she had a kindergartener and a preschooler.  The following fall, just seven months after Zachary died, I saw her on the first day of school, her belly about to pop with a third child.  A few months later, she was toting a stroller and a brand new baby boy in the infant carrier.  And now, here they were again - the baby boy now a full fledged toddler, in a baseball cap and running around in sandals carrying a sippy cup, his mother throwing her head back in laughter, small talking in the stands with the other moms. 

Every time I see these little humans, these mothers with new living children, produced after Zachary lived and then died, I can hardly believe my eyes.  My aimless unanswerable questions ensue...  How do these plans for children and lives materialize so effortlessly?  How do all of these little people not die?  How have they grown so big already?  Why have two of my children died, and all three of hers are living?  What is it like to feel so carefree at a baseball game, to casually banter with other parents, unencumbered by this kind of sorrow?


C.T. has joined a travel soccer club, and while we expect it will be a nice opportunity for him, I'm seriously dreading the whole getting-to-know-the-team process.  

Before try-outs in May, the coach asked us if C.T. wanted to practice with the team, to see if he could keep pace.  While B and I sat on the sidelines, watching the practice, one of the soccer moms decided to try to talk to us.  Of course, her second question, after introducing herself and asking which boy was ours, was:

So, do you have other children at home?

While I held my breath, B took the lead and gently informed her that C.T. has two brothers, both of them deceased. 

I don't know if I should have been shocked by what came out of her mouth next, but I was.

Oh, gotcha...
Do you live on the north side of town?

So, with the arrival this week of emails about the club/team social events for the summer and fall, involving families, my anxiety and panic about being part of this group has reached a crescendo.  I just don't know how to be graceful about Zachary's death... on top of B.W.'s.  I don't feel safe letting these people into even a fraction of our life, nor do I care about "socializing".     


I recall that B's (high school) senior yearbook blurb about his dreams and his future life included something like:

... I hope to get married and have three children...

I don't think he could have ever imagined it this way. 

Monday, April 25, 2016

I know that hour

There comes an hour when begging stops,
When the long interceding lips
Perceive their prayer is vain.
"Thou shalt not" is a kinder sword
Than from a disappointing God
"Disciple, call again".

Emily Dickinson, poem first published 1945

Monday, April 4, 2016

Real horror

As a young child, I had a strange recurring nightmare.

We were at the mall - my mother, my sister and me. The three of us ventured into the nurses supply store, which in itself was strange because no one in my immediate family worked in the medical field.  

The cheerful store clerk in my dream told us we should lay down and be pushed through a machine that she cranked by hand, as a conveyor belt fed that person through the covered part of a massive machine unit.  My mother laid down first, almost as if she were hypnotized to do so, and was calmly processed through the machine.  Everyone was smiling when she came out, a totally flattened, still alive, version of herself, on the other side.  My sister seemed perfectly happy to comply with the clerk's suggestion that she lay down, and to my horror, she was next to be squashed.  They held hands, my flattened mother and my flattened sister, and told me with paper doll smiles that I was next. 

I remember the dream going as far as me reluctantly laying down on the conveyor belt, before the disturbance of my own thrashing (presumably) woke me. 

My family teased me about it, because it was surely irrational, but for years I didn't like being in the vicinity of that store front.     


Just six days prior to this photo, Zachary was healthy.  Had just regained his birth weight.  Was breathing easily on his own. 

This photo was taken the day before Zachary died.  He had been suffering for more than five days, and was in a state of medical paralysis, on life support and many other life stabilizing medications, for almost three full days.

We needed a team of two to three people, usually including a respiratory therapist, to turn and prop him (and his ventilator) with blankets and towels, in a new position every few hours.  When he looked uncomfortable to me in between those times, if there was some impingement on any part of his body which might have materialized in skin breakdown or painful denting in his bloated body, I called his nurse to help me carefully move him again. 

On that Sunday morning, we were shifting Zachary around, and also trying to sponge bathe him, especially in the areas where the edema forced skin to lay on skin (where it otherwise wouldn't).  The respiratory therapist held his ventilator in place while his nurse gently rolled him to his side so that I could wash his back and neck. 

I froze, horrified beyond my pre-existing horror.  His back was flattened.  Indented, as if by a hard cover book.  It was as if a force had pressed onto him, held him there.  For days.  For weeks.  His skin was swollen, and hardened, all around the edges.

He was smashed.  My poor baby was suffering, soon to die, and now, he was flattened. 

While his nurse heaved and sighed at the sight, I wept and wept and wept, and steadied my shaking hands to wash the flattened parts of my beloved boy.  I kissed him and whispered to him again and again how sorry I was. 

I wanted to run.  I wanted to run up and down the hospital halls and scream at the top of my lungs about the torture he was enduring, about the neglect I suspected had led to such incredible suffering and such a devastating end for Zachary.  I wanted to disappear, to relinquish the responsibility I had, as his parent, to absorb all the horror unfolding upon the body and spirit of my son.  

But I couldn't run.  The next day, I'd have to be there for him as he died.  And now, every day, despite the life going on all around me, I remember and live with the horror that happened to Zachary.